GRIEF

During one of my hospice volunteer trainings a nurse spoke to us about her husband’s illness and eventual death. She said his death was peaceful and quite beautiful, especially after the long struggle with cancer, but then, she said, “The grief that followed was a real kick in the teeth.” I had never thought about death and grief as two separate experiences. And I think that much of what troubles me around death is actually the depth of grief that I could/will feel. While this is a project on mortality, I want to explore grief, to give it some real consideration. I sat down to speak with a grief counselor.

“Grief” – Sculpture by Bertram Mackennal

I would be grateful to hear your thoughts on grief. Death and grief are obviously linked, but they are quite separate also, right?

It’s true. Death and grief are linked but they’re separate events and ways of feeling. The last death that I personally experienced was my daughter-in-law’s. Jaimie died this past January, a couple of years after the death of my son. Her death was peaceful. She had been dying for a long, long time. After my son, her husband, JK, died, she rallied…I don’t know how…it was extraordinary. But finally she was ready to die, she talked about it, she made peace with the boys, she has three sons…had three sons.

Was she ill?

Yes. She had metastatic breast cancer. Jaimie knew she was dying. She knew it would never go away. The boys knew. They were ten, twelve and fourteen. The death…there were tons of friends around. Her mom was there, I was there. She died peacefully. She died really peacefully. She was at home. She was on hospice. But it was…. I mean I had two sons die, my mother died, and my aunt who I lived with in high school…they all died within a short time-frame just before Jaimie. But Jaimie’s was really a culmination…it just put me into a very dark place. Not dark in terms of…just…like a cocoon. I was just WRAPPED and moving through my days. And I knew it. I’d been there before. But all these deaths kind of wrapped me. About three weeks ago, I did my sitting (meditation), and it just…this veil dropped away and I felt the light coming in. It was lighter. It was like, life was bright! Now it’s been six years since my son Jason died, two and a half years since JK died, and two days before that my mother died, and a month after that my aunt died. And Jaimie died in January. That’s how long it can take for the grief to…it’s like this and this… (gestures ‘grasping at nothing’)…and you can’t really follow it always. And sometimes it’s important to detach just for your own health…but then it’s important to be aware of that detachment.

That’s a lot of close deaths in just six years. Would you be willing to tell me a bit more about them, individually?

The two sudden deaths, my two boys, were not peaceful. The doctor worked on Jason for over an hour to bring him…to try to start his heart. Jason had just operated at the hospital and then he’d gone to work out and collapsed suddenly. And my other son, JK, was hit by a car. He went straight up in the air and came down on his head and died. Those sudden deaths are, for those who are left…. I was in shock and stayed in shock for I don’t know how many years after Jason died and then when JK died…it IS the cocoon. And Jamie’s death darkened the cocoon. But I believe that it’s sort of a womb-like area that holds us, nurtures us, supports us. And I think that’s what shock is and I think that’s what many people call depression is. It’s a moist, damp area that lets us process and grow. It opens the seed of life and awareness again to other possibilities. But sometimes it takes a long time for that seed to germinate and grow. Sometimes the outer part of the seed is a little thicker and more dense. It can work. That’s how it worked for me. It gave me an awareness of grief around sudden death. Then my mother, who was 94 and not really sick but she had some respiratory problems, she died peacefully, and my aunt died peacefully, and Jaimie did. But they’re all different and I don’t think you can mourn collectively. I think one arises and the memories are there and they can intertwine but there’s one primary person to mourn and then that person goes back into dormancy and then another arises. They come and go.

It’s not possible to mourn as a general concept, you mean? We mourn specifically?

Yes. You mourn a person. You mourn individuals rather than a collective death. That doesn’t mean you can’t be aware of them at one time…we can be aware of war and atrocities…but to mourn someone and to grieve the loss of someone, there has to be A SOMEONE.

Would you define grief, mourning and bereavement?

Mourning is the outward expression of grief.

And grief is defined as deep distress or sorrow over a loss. So it’s the process of reacting to a loss?

Exactly. And bereavement is more of a clinical term. Bereavement is the time that you go through after someone dies. I am a Bereavement Counselor that means I deal with people who are left after someone dies…or after a loss actually. Someone recently described an interesting thing that I never really thought about before. She was a caregiver for her parents, full-time for the last two years. Her parents died this year within two weeks of each other. She said the loss of her extended family has really been hard for her. She said, “All the doctors, the nurses, the aides, the health practitioner, the nurse practitioner…” she goes through this litany of people who attended to her parents, people she saw frequently, who came to their home…she said that now, “It’s excruciating. I am all alone. I had all of these people and I have none of them anymore.” I’d never really thought about that as being an extended family and a huge loss for people. Especially for people who’ve had care for a long time. For their caregiver, after it’s over, not only are they no longer caring for the person who was sick and that’s a loss, that’s a primary loss, but this whole life, this whole life-style is gone. This woman cried. She said, “I didn’t think about it until it wasn’t there.”

We grieve the loss of people we love and we grieve for pets, but does grief extend to the loss of memories and future hopes that are no longer possible? It seems it could just keep going and going deeper and deeper down the rabbit hole.

It does. That’s why to pathologize things like someone having a conversation with the person who died, or to pathologize, “I felt him in bed with me, I touched his hand,” though ‘he’ had died months earlier, is really a disservice. First of all, we don‘t know. We don’t know what happens after death. We can surmise or we have belief systems around that, but to pathologize this period of mourning and the grief that we feel is to minimize what someone is going through. If it gives comfort and some support and it has meaning to someone, I think it’s a valuable tool for them to use to become present in this “new” life. That’s why when someone dies you don’t go to a traditional therapist because there are things that people go through over time that are unique to grieving. Grief is different. That is part of why I explained to you my whole experience, because yes, I do go to a therapist, yes I do go to group meetings and I have a sangha, a community of people who meditate. I am living my life. But I am also processing the deaths, having the memories stay present with me and arise into my conscious awareness. It took me a long time to balance all of that. Was I sick? No. I was in grief. I did my work, I had my relationships with family and friends, but I also am dealing with my grief in whatever way that I do. And it’s very individual. So it did take…it has taken…it will never really leave. So, back to your question… (laughs)…yeah, everything filters down. It changes. I had a conversation with somebody yesterday about the issue of loss and she said, “You go through all of this and no matter what the death, you are changed forever.” So that’s really the bottom line. You’re changed.

I love the image you invoked earlier of the cocoon because while it evokes a very real feeling of being tightly wrapped and isolated or enclosed, a cocoon is also so nurturing and transformative. It’s quite complex.

I picked this piece of paper up off the floor yesterday and I thought, “Oh my gosh! I forgot I wrote this!” and it says: “Grow. Change. Renew.” I thought of that when you were reminding me about the cocoon, that the person or creature inside the cocoon grows and changes and actually renews. You actually become NEW.

What do you think it is about loss and permanence/impermanence that we wrestle with and often find so difficult or scary?

The only thing that I think is permanent is impermanence. Our body is shedding cells constantly. The air around us changes constantly. I walk to work in the morning and I watch the flowers bloom in the early spring and then those die and the petals fall onto the soil and then they become part of the soil…then seeds start growing…it’s a good reminder…this is the microcosm of all life; it comes and it goes. And if we can sit with that and just be real about that, that things come and go, it becomes less scary.

Thinking about my own death impacts me, emotionally, much less than thinking about the eventual deaths of the people I love, who I may outlive. There’s coming to terms with my own death, but the more difficult one for me is about not being able to control things and keep those I love safe.

We had a meeting the other day and somebody was saying that we have to be really careful when we go to some of the Projects and to take an escort if you’re going to go. …(laughs)…And I said, “Jason was coming from working at a hospital, he went next door, he worked out, he walks up ten stairs, and he dies. JK walks out of a football game, he’s an anchor for Channel Two, the photographer walks across the road, JK takes one step onto the road and gets hit by a car.” I said, “After these things, why would I worry? I have no way of determining what’s going to happen in the next instant!” For me, it’s taken years, but you know what? You can go with an escort or without one, you can do whatever you want in the Projects or wherever and you will live to be one-hundred-six and you’ll be fine, or you will die. Is that being fatalistic or nihilistic? I don’t know. But I’m just not going to worry about it because I can’t do anything about it. I can encourage kids to go to school. I can be supportive to people. But in terms of life and death? I’m not it. I know it would be nice to think that I’m the determining factor about everybody’s life and death, but the truth of the matter is, I’m not. I promise you I can’t keep you alive. So I don’t know. I don’t have that anymore. Since the boys died, I’m just…I’m not going to protect anyone from anything because it doesn’t…you can’t… I hear what you’re saying, I mean I don’t want any more of my kids to die, I’m not saying that, I’m saying I can’t prevent it.

Do you know what motivated or helped you move forward after Jason’s death and then all of the subsequent deaths you experienced?

That’s an interesting question. I’ve wondered that myself, actually. One answer that I came to over time is that I’m really grateful for my parents. My mother…I don’t remember a time when the glass wasn’t half full. Everything was light! You could look at something one way but she could always see the goodness of it. And my dad was similar. He laughed easily. He was a little silly. And they both liked each other. There was real genuineness in them. And no matter what happened, life was full to them. It was full until Dad died. And then after, Mother had a full life. She went places with friends. I mean, they did everything together, Mother and Dad did. But she clicked right into, “Okay! That was that part of my life, now here’s this next part!”

How old was she when your dad died?

She was seventy-eight. Mother was real flexible. I really did look at, “What is it that allows me to continue and not sink into…something?” I think that is a big piece: I had good modeling. And the other, is that I’m very responsible for my own modeling to my own children. So rather than give them a lot of blah, blah, blah, I model that. I’m not negating my own need to find my own way through this, but there is part of me that says, “Get up and do this! Because you are that person for them. How you saw your parents, they are going to see you. So you need to buck up!” And I don’t mean get out of the grief. I mean, just go to work…

…And DO the grief.

Yes. Do the grief and keep their memories alive and talk about them. Those are the things I use and my kids use to go through the grieving process: a lot of humor, a lot of talking about things.

How old were your sons when they died?

Jason was thirty-seven, he died in 2008 and JK died in 2011. He was forty-one.

Can you tell me about your journey to becoming a grief counselor?

I started volunteering in Las Vegas, at Nathan Adelson Hospice. They gave me some groups…this was one year after Jason died. That’s the time-frame required for volunteering if you’ve experienced a close death. I was working at the university (of Nevada) and Nathan Adelson was right next door. When I moved back to New York I started volunteering at VNS (Visiting Nurse Service) and then I applied for this position, Bereavement Counselor. It’s been four and a half years since I’ve been doing this specific work. I developed a program in the last year called Mindfulness-based Grief Reduction that’s based on the sixteen Mindfulness breathing exercises, activities, some writings and things like that. It provides tools for people to remain somehow coherent in terms of their energy and their focus during the time that they’re grieving in the most intense way. People are looking for ways to find some quietness around the memories and to be okay with the memories. So that’s what I’m doing: putting what I’ve found to be useful tools for myself into a program that I can offer to other people.

Would you say that Jason’s death brought you quite specifically onto this path, working with bereavement, or were you doing work like this before?

My research, up to that time, was about energy fields. Most of it was with infants and young children. We were measuring the frequencies of different people, at different times, over time. One was through the Child and Family Research Center at the University of Nevada. Then in Arizona there was a group that works with teens. We measured the frequencies of their energy before and after their meditation, before and after their movement activities…so I was interested in how energy changed and how we had the capacity to change it and bring it into coherence and harmony ourselves; to do that is our job, not someone else’s. All of this work fed into looking at death and dying.

You mentioned earlier the value of having good modeling from your parents, maybe particularly, your mother. I think it’s so important to have models for how to…do anything, really! There are cultures where grief is a much more public, much more communal experience. What are your thoughts on the benefit of that, or not, and the challenge, perhaps, in our culture, especially now-a-days where everything is so private and hidden?

When I was little, we lived in a neighborhood that was Irish Catholic, mostly. Not all, but mostly.

Where did you grow up?

In Wisconsin. And in this neighborhood, there were a lot of older people…. We moved from that neighborhood when I was five, so these are memories from when I was very young. When somebody died, my brother and I would go, “Ha!”…(big smile and expression of excitement…laughs)…we knew it would be a party and we knew there’d be food. A couple of times the bodies were laid out on the dining room table or somewhere in the home…this is probably also another facet of why I’m not totally encapsulated with this idea of death being horrible. We would eat, it was party, people were nice, people laughed, we could play…all the kids went to all the funerals! …(laughs)… It was great! Somebody died, it was a good thing! We’d have the BEST food. My mother was very much about vegetables. Grandpa had a garden and we’d go pick all our vegetables and she’d cook them so we didn’t have any crappy food EVER. So if you could have cake and cupcakes and candy at these funerals it was like, “Oh my gosh!” So my initiation with death was good. I remember this one house, there were two elderly sisters and a brother who lived there. I remember that the brother, Johnny, died. He was in his eighties and was always very nice to us. People would walk everywhere and he’d always stop and say, “Hi.” So it wasn’t like I didn’t know him and he just happened to die and there was food. We knew him, and it was part of what we knew: death happens; people are born and people die. So we’d go to these funerals and people would cry, but they’d also laugh. It was a whole mix. I do think there needs to be a more public expression of camaraderie and support. When people come together around a death, it changes the whole idea of death. But that’s me. A couple of my kids really have…like, “Really? We’re gonna do a funeral??” And then I have to go through the whole, “This is what it’s about, this is why we do this,” and they’re in their forties. They’re not six years old. So people have a different awareness of it, maybe particularly in this culture. The funerals for the boys were massive. One was held at the university gym. It was huge. And some of my kids were reticent about that. About the whole thing. But I think it was helpful in their own grief process. I really do. I think it was vital. But I don’t know that they think that. It’s interesting how people see it differently but I personally think it’s important to have a funeral, big or small, just to have people come, and be around. Humor is so important! And when people come together they can remember the goofy times. They can remember the funny stuff that happened. You don’t get to do that by yourself. You’re not gonna sit and laugh by yourself. I mean I might …(laughs)… but most people don’t. Also, when you have an influx of people at the funeral, some of those people are going to show up after and you then have this ongoing support.

How has your relationship with grief and mortality changed in these last six years?

It’s evolved. Absolutely. Mortality…sometimes I think that in many ways it must be welcoming and that we’re taught to not have it be welcoming. I don’t mean suicide, I mean just thinking about the change and to be curious about it. I’ve always been curious and it’s just one more thing to be curious about. Grief has evolved to a peacefulness over these years. I can be peaceful in a violent death and peaceful in a non-violent death. And I think it’s because I’m really quiet about control. I don’t have it. I can see “it” as it is. The reality is that “it” is. It just is. So I can leave it as it is. Oftentimes I tell people, “That is the way it is, so let’s just be with what IS instead of what we’d like it to be.” So that’s my lesson I’ve learned.

That’s huge!

Yeah, it is huge. It’s ongoing, of course. It’s about pulling it back for me to remember, not just giving it to other people, but to remind myself. It’s even as small as sometimes here at work we can’t find an office to see people. We’re running around madly to try to find any empty office, and it just is. It’s not someone’s idea of a joke. It’s a neutral situation and it’s how I see it or how I deal with it that gives it any heat or any meaning. The more I’m aware of that, the more life is just one step and then another.

When you’re counseling people through grief, is there a common struggle that people have?

There is one, maybe specific to hospice, which is what I do. There were some researchers from Cornell here the other day talking about the massive increase in the use of Oxycodone. Families are asking for it because of the fear of morphine. Morphine has such a negative connotation, opium dens etc.. People have this idea of it, that it kills. That it stops the heart. It’s a pain drug that apparently has less side-effects than most. Oxycodone has HUGE side effects compared to morphine. And it’s not as regulated. My answer to your question, after this preamble, is that I believe that one of the hardest things is when people latch onto guilt. Morphine is one of THE biggest things to get past. “If I hadn’t let them give her morphine, she wouldn’t have died…she would’ve lived another week….” The guilt is overwhelming for people because they can’t do anything about it. They can never, ever, redo it. And they can’t really re-frame it because that was that! I’ve had nurses come in to talk to a bereavement client about morphine but they just can’t get past it. That is a tough one for people.

What is important to understand about grief?

One thing about grief is that you really have to attend to it. You have to be present with your sense of loss. Even if you didn’t like the person who died, your life changes and so the loss is meaningful. It’s also okay to be okay with the death. You don’t have to have specific feelings about it. You just have to be present with whatever feelings arise. They come and they will go. To attach to the guilt keeps guilt there and allows it to build and get denser and denser and it becomes like the hulk…like this monster that envelops you. So be present with the feelings and let them come and let them go. Because they will! If a pilot takes his or her hands off the controls for a moment and lets the plane fly, the plane will fly. They’re built to fly. If you want to keep the energy moving, keep your hands off it. Don’t try to make yourself guilty because you think you should be. Let the guilt be there, if it is, but let it flow through you and let it go. Let the anguish, let the sadness, let the anger come, but let it go. So it’s like taking your hands off but keeping your awareness there until it starts fading. “Ah, my little anxiety, I see you’re here! Welcome!” and then you see it go. And it doesn’t mean that it won’t come back, but at least you have a method. And it doesn’t mean those feelings are there for just a second, I’m not saying that, but as long as they are there, be aware of them, “You’re still here! This is a long visit!” It’s helpful to really personify the feeling so that it’s not getting stuffed down in you because it will arise again, with great vigor!

Thank you so much! This has been very informative for me and I think will be helpful to people…at some point all of us will likely have to deal with grief and a cocoon of our own. I really appreciate your time and you sharing your story and incredible insight. Thank you so much.

Thank YOU so much!

Photo Credit: Aussiegall, Flickr.com

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Thank you for reading this interview! I look forward to your thoughts.

I invite you to follow me on Twitter @PonderMortality

A Former Marine Talks Mortality, Faith, Feelings (…and “Chunk”)

I’m delighted that this Mortality Project prompted Michael to reach out to me. While we had stayed in touch with the occasional e-mail or Facebook message, this was the first time we had seen each other or conversed in seven years. What follows is the interview he generously agreed to (via video chat). I begin:

You e-mailed me several weeks ago about the experience of walking through your apartment with your dad before your first deployment. You had to let him know which belongings were yours and what belonged to the government in case you were killed and didn’t make it back home. Can you talk to me about what your relationship with mortality was like before this experience and then how it changed or evolved after it?

I hadn’t really had much interaction with death at all. I’d been to my great-grandmother’s funeral and that was about it. I had one friend, a classmate, who had passed away, but aside from that I hadn’t had any experiences. Death was just this thing that was out there and you knew it was there but…. And then when you’re leaving for deployments, there’s all kinds of uncertainty. I didn’t know what I was getting into, what we’d be facing. I was deployed to Fallujah, Iraq and then later, to Southern Afghanistan. Both times I didn’t know what I was headed into. I had to really think that this could be the last time I see my parents. I could never touch foot back on Tennessee and Nashville and the U.S.. So coming to grips with that and having to write out the details of what you’d want at your funeral…that was really sobering.

Is that something you’re required to do before you deploy?

Yeah, they have you fill out a Last Will and Testament and then I wrote a letter to my dad describing what I would want at my funeral, who I’d want to officiate.

How did you go about writing that letter?

Very practically. I wasn’t sitting there sobbing. I just wrote out what I’d want to be said, who I would want in charge of my funeral. It’s your last chance to say what you want to say. To say what’s really important in life. I mean it was sobering, but it needed to be done.

Do you think there’s something valuable about that experience? Would you recommend people to do it?

Oh yeah. Yeah. I really would. Just thinking about what message would you want delivered to the people that you love…this is kind of your last shot to share whatever advice you can with everybody so they can get to know who you were, fully. It would definitely be valuable for anyone to do.

I assume that this experience of sitting and writing the letter was a solitary experience, you were alone when you did that. What was it like when you then actually had to share this potential reality of your death? Like when you had to show your dad around your home?

This is kind of sad. My dad and I haven’t always been…my dad is NOT emotional. At all. I love him to death and I know that he loves me, but I’ve only seen him cry once in my life. He’s not that great at showing affection. He’s one of the most dutiful and truthful people, but…it wasn’t a very emotional time. It was emotional for me, but those emotions were kept in. It was just so…(laughs)…I wish it’d been more…but that’s just the way my dad is. And for all I know he got in the car and cried on his way home. I have no idea.

And you never talked about it? Even after you came home?

No. And then we had to do the same thing when I went to Afghanistan. That deployment was even more difficult because there were a lot more uncertainties going to Afghanistan. This was the first time Marines had been to that area since 2004. So there were a lot of unknown areas, and we didn’t know what we’d be doing for our mission. I still remember it was cold in Jacksonville, North Carolina as I was telling my dad goodbye. And my mom, she didn’t want to come see me off. She wanted to say goodbye at home in Nashville where she remembered me. She didn’t want to say goodbye in a foreign place. I told her goodbye and hugged her on our front doorstep. My parents are still together and I think my dad flew to North Carolina and then drove my truck and my boat down to Nashville. I think my mom was feeling a lot during that time. She was trying to hold it together. But she never said too much about how difficult it was for her. My brother had to tell me that.

You have siblings?

I do. I have four sisters and a brother. I have one younger sister and the rest of my siblings are older.

Were they involved at all during this time?

I think it was the only time I saw my brother cry, when I was leaving for Iraq. We don’t show emotion very well in my family! …(laughs)…At least amongst each other.

Most of us deal with the reality of our parents dying before us. How did your view on mortality change after having this complicated family experience where you were the one “most likely” to die?

I think it made me appreciate…gosh…let me get this verse, “He who looses his life will find it.” And what I gathered from that is…nobody truly lives until they find something worth dying for. That’s how I’ve tried to live my life. I’ve found something worth dying for.

What is that?

I would say my faith would be the number one thing. And then also being willing to go out die for my country. Having looked at death in the face and had the number of close calls that I had, it’s made me content. I know if I were to die tomorrow, I would’ve lived a very full life here on earth. That’s the main thing that gives me peace about dying: my faith. I didn’t have that before I had my faith. I was pretty lost for some time.

Did you find your faith around the same time as your deployments?

No, I was in eighth grade…which seems like a really long time ago, and it was. I was a troublemaker as a kid. I thought Christianity was: get all your ducks in a row, be a really good person, do these things and you ATTAIN heaven. Or you attain eternal life.  And in eighth grade, freshman year, I got in a lot of trouble. I almost got kicked out of school. And I realized, “Holy crap. I don’t have all my stuff together. And I’m not a good person. I proved that with what I did to almost get kicked out of school.” And someone shared the gospel message with me and I understood we can’t do it. Nobody’s perfect.

Is your family Christian also?

Yes. But growing up I thought that Christianity was all just about being a really good person, that it was all work based. Meaning, our salvation and relationship with God all depended on our behavior and our good deeds. As opposed to: none of us have it together! So we all need a savior. Resting in that message gave me the peace that what’s beyond this world, if there is an afterlife, I don’t have to pass this test. It’s already been completed and that was done by Christ. So that gave me peace. I didn’t have a fear of dying, there was more of a fear of dying away from home, in a foreign land. So, I had a Tennessee flag that I kept in my truck and it was always right beside me. So if something did happen, I’d have that to grab on to. It sounds morbid, but it was a comfort to me.

Not a whole lot sounds morbid to me these days! …(both laugh)…

“This is the Tennessee flag that I kept folded up and by my side during our deployment to Afghanistan. On our last combat patrol, I flew it behind my truck for a few short minutes. I brought it home to Tennessee and I gave it to my uncle as a gift. It is now framed and hanging on his wall in his home in Franklin, TN.”

Is death something you guys would talk about amongst yourselves while you were overseas?

Not really. Before we deployed, part of training is to desensitize you. They would do things…it’s been so long since I’ve been through training, but it’s just: you buckle down and do the job. You put emotions aside. So we didn’t talk about it…. I mean some of the Marines may have talked about it amongst themselves, but I was their platoon commander and they probably didn’t feel comfortable talking to me about it. There was this professional boundary that didn’t get crossed.

Did you have someone you could’ve talked to? Or did you not feel the need for it?

We had a chaplain that would come around about once every three weeks and I had some really close friends, but we mostly talked about home. We didn’t want to talk about, “Gosh, I could get shot in the head tomorrow.” We didn’t want to deal with that reality. Yeah, we would talk about it if something did happen to one of our friends, but you just couldn’t dwell on it. You had to acknowledge that it was there but move on. And just hope that you didn’t get killed.

That really makes sense to me because you were living that life-and-death reality. It wasn’t something that needed to be thought about. It was already so present. Do you think that you have a different view on death than most civilians even though you are now a civilian yourself?

That’s a really good question…(long pause)… One thing that I really want to be able to do, and that’s what I admire you for, is to be emotionally available to somebody who’s going through something. I don’t know if anybody’s ever fully prepared to do that, but one of my good friends lost his mom to cancer. This is a guy I was in Afghanistan with. He was one of my best friends. Still is. And I remember just feeling so ill-equipped when I called him on the phone to talk with him. I mean, what do you say to somebody? So I didn’t feel any better off there. I just felt inadequate. I just said, “Man, I’m so sorry…if there’s anything I can do….” I didn’t feel any better equipped there emotionally. As far as my view on death, I would say my faith would be the only distinguishing factor when it comes down to it. I believe in life beyond here on earth and I believe we create our own heaven and hell here on earth, but it extends beyond. So I would say it’s mainly my faith that differentiates how I view death.

More so than the experiences you had…

But then again, I also see the necessity of death sometimes. If evil people are trying to harm those you love or harm innocent people, we need to do something about it. And maybe somebody who hasn’t been there or who hasn’t been trained in that way, they might say that war is never necessary. Maybe I’m more pragmatic about it.

That’s interesting. I never thought about the fact that you’d walk away with a certain pragmatism around the whole subject of death.

Yes. But more out of self-defense. When it comes to the death penalty, I’m kind of torn, to be honest. I mean, gosh, I wouldn’t know how I would feel if one of my family members was murdered by somebody. I don’t know how I’d feel. But I’d like to say that I would want to forgive that person and then pray for that person to be transformed while they were in prison, no matter how long it took, and that they wouldn’t be executed. That you would give them enough time to repent and to be sorry for what they did. So. I don’t know where I stand on that.

Can you pinpoint what it was about this blog that inspired you to e-mail me?

It really made me think. And think about what matters in life. Not many people want to take this topic head on and I think it’s very admirable of you to do that. I think we can get caught up in thinking like we’re never gonna die! But all of us have to go some day and we want to make sure that we’ve done what we wanted to do and that we’ve loved people as we wanted to and that we’ve made a difference here on earth. This is our one shot here on earth! So I think this topic forces us to question and could potentially lead to some answers. For some people things could’ve gone unresolved had they not thought about finality. That’s a long-winded way of saying that what you’re doing is great! And thinking about death is what caused me to come to where I did in my faith. Just thinking, “What is on the other side?” If there’s a good place and a bad place, I sure as heck don’t want to go to the bad place. At least I want to learn about that, see if I believe it or not, before I dismiss it altogether…and maybe I’ll discover that there’s nothing!…(laughs)…but you’ve got nothing to lose by investigating Christianity or other religions. But for me it’s Christianity. And Christianity is the belief that we can’t do it all ourselves and that warms our hearts up to love God and that helps us love others…. So that’s why I’m so thankful that you’re doing this. It helps me think about all this more…. How has this project changed you so far?

It’s been a fine balance for me, as someone who does think about this kind of stuff a lot. But with this particular topic, the place that I’m getting to is how incredibly important it is to live this life as fully as possible. And that’s very individual, right? That means something very different to every person. Owning what that exploration is for me rather than trying to emulate friends or parents or siblings has been very powerful. There’s a lot to learn from family and friends, but it’s a lot like death: ultimately it’s a very individual journey even though people around you can contribute so, so much.

Yeah, you’re gonna be standing there by yourself to make that leap. Your best friend isn’t gonna be by your side. Maybe physically they will be, but not in any other way.

All of the emotional and psychological stuff around mortality, which is everything that I’m exploring, my impression is that the space wasn’t there for it while you were deployed. But were there any particular deaths that you witnessed or were involved with that were so striking that you couldn’t, in the moment, have that pragmatism you talked about? And/or was most of that dealt with when you came home? Or do you think it’s still something in that “pragmatic” category.

For me, as a man, I want to be emotionally present and to accept whenever I have emotions, to grieve, to cry. There were a couple of deaths…I lost one of my Marines, Corporal Pickard, Joshua Pickard, and I remember having to go and identify his body in Fallujah. I had to give his eulogy at the ceremony in Fallujah. His body wasn’t there but we have a ceremony for the entire company. And that was…what was even harder…one of the hardest things I’ve ever had to do, when I got back to the States, I called his mom and dad. I’d never spoken with them before. I just said, “I’m Josh’s platoon commander and he was one hell of a Marine and a great man, everybody loved him, and I just want to see if you have any questions for me.” And I remember his mom was pretty level-headed about it. His father was still very upset. He cried. I remember…gosh…I’m kind of ashamed saying this but I didn’t know how else to deal with this…but I had to have a couple of drinks to make that call. Not in the sense that I was drunk, but it was that daunting. I didn’t know how to deal with that emotionally. And that sounds horrible! Now that I’ve had that come out of my mouth that I had to have a couple of drinks to make that call… but I didn’t know how to do it.

How old were you when this happened?

Twenty-four.

How would you have dealt with it ideally?

Ideally I wouldn’t have needed to have those drinks. Why did I need to have a couple of drinks before I made that call? Why couldn’t I have just been emotional and accepted it and just said, “This is going to be tough.” Why did I need that crutch? Intentionally or unintentionally, I think the military teaches you to have all of these coping mechanisms. That’s why so many people in the military use tobacco, ’cause tobacco can be something you do when you’re lonely. It makes you feel “home” somehow. I remember I smoked about a pack a day when I was in Afghanistan. I didn’t have my friends from home or family over there with me, so it was something that you did. I didn’t allow myself to feel the emotion of loneliness, so I turned to that. So…I’ve had some deaths like that, that have been very impactful to me, and I just want to be able to grieve them. As I think we should. It’s very healthy. So Corporal Pickard, Lieutenant Jason Mann, he was killed in Afghanistan. And then another friend of mine, Brandon Barrett, he was one of my buddies. He’s from Indiana. We would always smoke together. He was the first from his family to go to college and he’d always come up to me, “Heeeey, Michael Bass! What’s goin’ on?” and he’d say it in this southern accent. He would just always make you laugh. Just a great guy. So that was really sad. He was killed on his second deployment to Afghanistan. I wasn’t on that deployment but having to deal with his death back home, at his funeral, was really tough.

“Here I am with my buddy Brandon Barret (right), in Afghanistan.”

Were you able to grieve at all while you were overseas? Or did you do that when you came home?

I don’t think I ever let my guard down to grieve while I was there. I think more so when I got back. Honestly, I don’t know if I’ve fully grieved.

This desire to be emotionally available and equipped and open, does most of that come because, as you described, most of the men in your family are not like that? Or what’s the motivation for you?

I just want to live life to the fullest, like you talked about. Emotions are a part of life. That doesn’t mean…(laughs)…I don’t want to be out of control and crying all the time…but just to be happy and be sad and if something’s bothering me to be able to talk about it instead of being passive-aggressive about it. I want to be fully alive. That’s where my desire comes from. And my experience in the military, in some ways, kind of harmed me in that respect. Not in the sense of PTSD, but just teaching me, “Hey, I need to be strong.” And maybe I took it the wrong way, but I think it teaches you that being emotionless is to be strong. So I just want to be able to deal with all of that.

That’s a very inspiring and inspired quest: to live your live fully by FEELING it fully.

Oh yeah. Loving others fully. And accepting that people love you. And I think that’s something I struggle with. Allowing people to love me and accepting that love. I can be tough on myself…(laughs)…this is getting deep! You didn’t know you’d get to know me this well!…(laughs).

Speaking of being able to receive love, I’m reminded of a story you told about a dog that you and your Marines adopted? I think the story stayed with me because it was an example of such pure love and care during the chaos of war.

Yeah, while we were in Afghanistan, our Marines adopted several dogs and puppies to help us keep our sanity. One of them, I’m sure this is the story you’re thinking of, was a puppy we affectionately named Chunk. Towards the end of the deployment, one of our Marines raised support back home in North Carolina to fly Chunk back to the States with all of her required shots and medical needs. The only problem was that he couldn’t get Chunk out of the town we were operating in and back to Kandahar Airfield where she could be flown to the States. I devised a plan to drive her in one of our vehicles to one of the forward operating bases, where, I could hand her off to one of my friends who was a Huey helicopter pilot. He flew her to Kandahar Airfield and there she was met by some other Marines who picked her up for her “International” flight.

“Here’s Chunk in transport.”

Wow! What an adventure for her! Do you know what’s happened to her?

Yeah, years later when I was living in Arlington, Virginia, Chunk and I got to reunite. It was kind of amazing. The last time I saw her, I was handing her off to a helicopter pilot in Garmsir, Afghanistan. And now she is happily living with the same Marine who adopted her. And with his wife.

“My happy reunion with Chunk!”

Well, I think it’s great to be able to end on such an uplifting note! Thank you Michael for taking the time. I’m really grateful to you for your candor, sincerity and openness…and for your trust in me!

Thank YOU, Sal! I really appreciate you doing this.

Final Exit: the Debate Around Euthanasia and Physician Assisted Suicide

The debate around euthanasia and physician assisted suicide is an interesting one and very layered. There are many opinions to consider from many sources: the medical establishment, religious establishments, patients, families and so on. What makes this topic so incredibly difficult is how emotional and personal it is. Much like the pro-life/pro-choice debate, at first it seems to break down into similar camps with deep religious and “conservative” views on one side and “liberal,” right-to-choose views on the other. But the truth (if it is possible to establish a truth) is much more complex.

The entangled emotional, spiritual and logical strings that bind up this topic are difficult to contend with. If we as a society already struggle with aging and with mortality, the intricacies of discussing who has the right to take a life (including a person’s right to take their own) are almost impossible to overcome. Yet this debate is an important one. We may not be able to come to an answer or a “clean” solution that satisfies everyone, but we must think about it and discuss it. Through discussions I believe we will discover how very problematic our views on death, dignity, duty, courage and control are; how much the meaning of those words vary depending upon the individual and the context. One person’s courage to accept and endure what God or fate has bestowed on them is another person’s courage to say, “I am ready and willing to say goodbye and to let go.” How can we deem which is more courageous? Through these discussions on a political level and, perhaps more importantly, on a personal level, with our friends, our loved ones, we will learn about what matters to us, who we are, what we can accept, what we must accept, what we fear….

There is an important distinction between euthanasia and physician-assisted-suicide, or physician aid in dying (also known as PAD). The key difference between the two is who administers the lethal dose of medication: euthanasia entails the physician or another third-party administering the medication, whereas PAD requires the patient to self-administer the medication and to determine whether and when to do this. Euthanasia is illegal in all states of the U.S., while PAD has, so far, been legalized in the states of Oregon, Washington, Montana, Vermont, and New Mexico.

When I was younger, euthanasia was on the news as Dr. Jack Kevorkian was an extremely controversial figure. His views on death were quite extreme. He did not believe that a patient had to be terminally ill in order to assist them with ending their life, only that they had to be suffering. His reasoning was, “We’re all terminal,” which is, of course, true! But there certainly were not enough guidelines or laws in place to ensure that every one of his “patients” were of sound mind or that they had received proper counseling and care. It is a difficult task to determine exactly where to draw the line but that is our job as a society: to wrestle with that question. Kevorkian was involved in several trials but finally, on March 26, 1999 he was charged with second-degree murder and two days later (on my birthday) was sentenced to serve ten to twenty-five years in prison. His last “patient” (the quotation marks are purposeful because Kevorkian had by this point lost his medical license), was the only patient to whom Kevorkian directly administered a lethal injection. All of the previous “patients” had administered the lethal dose themselves. While physician-assisted-suicide was not legal, at the time he began his work it was not illegal either, hence the heated debate. Thomas Youk, his last “patient,” was in the final stages of Lou Gehrig’s Disease and he was unable to administer the dose himself so Kevorkian administered it to him. Kevorkian ended up serving eight years in prison and did not assist in any more deaths after his release, though he did work to persuade states to change their laws regarding PAD and euthanasia until he died a few years later.

I was leaving my acupuncturist’s office building the other day through the freight entrance (since the lobby is being remodeled) and noticed this sign and laughed to myself, “What a perfect photograph (and title!) for this topic!” A little bit of humor is necessary.

Photo credit: Salomé M. Krell

There was also something amusing (perhaps even poetic) about being led by exit signs through a labyrinth of one doorway to another until reaching this final door before spilling out onto West 29th Street. If there is an afterlife, I hope it is more imaginative than that!

Our “final exit” is important. Leaving God and religion out of it (for now), I can understand the arguments opposing the legalization of euthanasia. Our medical system is in need of many, many reforms and one would be hard pressed to find anyone who feels that the system functions optimally. While medical advancements have been able to extend lifespans, that hasn’t guaranteed extending quality of life. In a medical system that has not yet done enough to care for the elderly and the dying, the worry around allowing physicians to end a patient’s life is understandable and important.

Our medical system also functions in such a way that one’s care improves dramatically depending on how much money one can throw at the problem. An argument I have encountered several times is that there is a concern that elderly patients, especially the poor, would be euthanized as a way to save the system money. That is a dramatic view, but not out of the realm of possibility. With poorer patients often not having someone there to advocate for their wishes, we would be entrusting a system to make decisions about the worth of someone’s life and trusting physicians to always have their patient’s best interests at heart. If it becomes legal for physicians to end a person’s life, the fear is that it will happen all too frequently with no 100% guarantee that it was in accordance with the patient’s wishes.

A brilliant documentary, How to Die in Oregon (you can stream it on Netflix), sheds light on a related issue. A man was dying of cancer and his insurance company refused to pay for a more aggressive form of chemotherapy after an initial round did not work. He received a letter from his insurance company stating that the second chemo treatment was denied, but they would cover palliative care and the cost of a physician-assisted suicide. If someone wants treatment and wants to continue fighting their illness, the option should be available to them. Period. Access to treatment and excellent healthcare is a right, not a luxury. I feel very strongly about that.

We will all have choices to make as we age and I would like as many options available to me as possible. For example, it did not take more than a few visits to a nursing home for me to have it very clear in my mind that I will do whatever I can to avoid ending up there in my later years. I read a story of an elderly woman who lives on cruise ships! She did the calculation and discovered that it would be cheaper for her to go from one cruise to another than to live in a nursing home. The ships have medical doctors, cleaning services and she is constantly surrounded by people, entertainment, good food and travel. I also imagine the difference between being treated as a guest versus a patient must be dramatic. Obviously while she is elderly, she is not yet infirm and is able to do this. I applaud her for being so adventurous! I am not a fan of cruise ships but I would certainly opt for that over a nursing home any day.

I was speaking to a doctor friend of mine recently who told me that several of her colleagues in the palliative care field believe that if palliative care is done properly to begin with, the patient would not reach a point of wanting to take their own life. They would be able to wait it out until their body gives out “naturally.” Pain, however, can sometimes only be managed up to a certain point. Even for a patient to have to decide between being completely doped up on morphine versus being “lucid” but in unbearable pain, is not an acceptable option. My friend acknowledged that there is often a proprietary sense in the medical field around each specialty. Some in palliative care want to be able to help and control the whole problem. Things might look and function very differently if people acknowledged that all care was part of a continuum and once palliative care was no longer working for a patient, then the next transition could be a physician assisted death.

The crux of all of this lies in our ability to talk about death and embrace it as part of the human experience. Death is not a failure of modern medicine. At some point our bodies will be too old and too weak to be able to withstand another operation. Nature takes over. It is what happens. I was sent a wonderful article written by Dr. Craig Bowron. I was tempted to simply let his article be my blog this week! He is incredibly insightful and outlines several reasons why we have distanced ourselves from death (you can read the full article by clicking here). Those of us living in urban cities, except perhaps those living in particularly dangerous neighborhoods, are quite removed from death. Farmers and those of us living in the countryside more readily experience the death of animals and plants and therefore the life/death cycle is much more a part of everyday existence. In the city, death is removed. There is the occasional roadkill that leaves one pondering mortality, but the rest of the time it is the hustle and bustle of (often distracted) living. Many of my friends and I long to live in the country at some point. I do not believe it is merely a romanticized view of the countryside that is feeding this desire. There is a strong need in me to feel more connected to life, to what really matters, to what is real; to appreciate sunrises and sunsets (which requires the ability to see them in the first place!). This tangent is not to condemn urban living, but to attempt to sort through this deep disconnect our culture has with mortality and with finiteness.

Dr. Bowron also points out that we live in a society with very few multi-generational homes. There was a time when 80% of the elderly lived with their children. Families experienced aging and witnessed firsthand the decline of the human body. The elderly usually died at home surrounded by family. Some might argue that this was not an ideal situation. Certainly the ability to live away from ones family, to leave the nest, is a tremendously important aspect of growing up and growing into oneself. But I cannot help but feel that we have lost something. I suppose it depends on how well one gets along with one’s family!

There is a final, powerful point Dr. Bowron makes which, I believe, plays a big role in the debate around physician-assisted-suicide, and that is: guilt. He writes:

Doing something often feels better than doing nothing. Inaction feeds the sense of guilt-ridden ineptness family members already feel as they ask themselves, “Why can’t I do more for this person I love so much?” Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.” In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”

I believe most of us wish for our loved ones to die peacefully, well into old age, in their sleep. In this day and age, however, that is a rare luxury.

For some, arguing for euthanasia and/or for PAD is a distraction from focusing on the importance of quality of life at the end. We have much work to do and they believe this option lets the medical establishment off the hook. But cannot suicide be part of the conversation? If someone of sound mind finds that their life no longer has any quality, why force them to continue living? I believe there is a very strong and pervasive attitude in our culture that courage and dignity are obtained through suffering. I believe this way of thinking is incredibly destructive and harmful.

For me, the debate comes down to a human level. We must look deeper than bureaucracy and even morality to get to the very basic. I understand and respect that laws are there to protect us. I understand that there are people out there who seek to inflict harm and laws and rules are necessary to enforce proper conduct. However, enforcing morality on someone who has a terminal illness, who is in pain, or who finds they no longer have any quality of life, is something I cannot embrace. Why not entrust the option of ending their life to them? Who can possibly be a better judge of a quality of life than the person living it? While I respect that people have deep religious views on the matter, I cannot agree that this allows them the right to deny someone else the option. I cannot imagine that this would be a decision anyone could take lightly. Anyone leaving behind a loved one, a partner, children, siblings, nieces and/or nephews, a beloved pet, they will wrestle with the decision knowing that their death will cause those they love deep grief. I cannot imagine that legalizing PAD would suddenly mean that people would be killing themselves left and right just to avoid growing old or to avoid the unknown journey of the dying process. If an “unacceptable” number of people were to deem that their existence is not worth the struggle with pain or to accept a dwindling body or brain, then perhaps we, as a society, need to take a closer look at how we value life. If being productive is the only way to contribute value, then there is little hope for those who are bed-ridden but who, perhaps, are brilliant story tellers. The fears around allowing patients to determine their own exit says much more to me about our culture than it does about anything else. I believe we fear the guilt. I believe we fear the fact that sometimes there is NOTHING to be done. Sometimes all one can do is be there. Allowing a loved one to say, “I’ve had enough,” and allowing them to take their own life must be wildly difficult. It means having to put another’s will, logic and feelings above ones own. But that is love, isn’t it?

The documentary I mentioned earlier, How to Die in Oregon, is about the Death with Dignity Act, allowing physician assisted suicide in Oregon and the subsequent battle and passing of the law in Washington State. The documentary shows the care and compassion those fighting on the front lines of this issue have for the dying. The organization, Compassion & Choices, is very impressive (you can visit their website by clicking here). They are not fighting for death. They are working to ensure that everyone who can and who wants control over their own death is granted that right. The documentary does not shy away from showing the difficulty that a family undergoes as a fifty-four year old mother of two, with terminal cancer, makes the decision she will end her own life once her quality of life is no longer bearable to her. She and her family speak beautifully and honestly about the struggle throughout this journey. It is an extraordinary thing to witness.

I have the luxury of not being burdened by religious morality with this issue. I was raised with strong morals and deep principles, but not with any particular religious view. While I have not broached this sensitive topic with some of the more open, religious members of my extended family, I have spoken to a few others (admittedly much older and staunchly Christian) who are deeply driven by the fear of God and the need for others to fear God. Our conversation did not get much deeper than that so I searched around online. The website for the U.S. Conference of Catholic Bishops has some very interesting points against physician-assisted-suicide (you can visit the website by clicking here).  I agree that it is problematic that: “Many today measure the value of life in strictly utilitarian terms. Seeing diminished value in lives that are no longer robust, they conclude that physician-assisted suicide is a rational choice.” But the problem is not answered by disallowing PAD. The problem is a deep societal one that needs to be addressed.

This site also suggests that allowing physician-assisted-suicide will clash drastically with a physician’s first obligation to “Do No Harm.” But I have to question whether following this teaching from The Gospel of Life, section 66, written by Pope John Paul II, which they cite, is not also harmful:

In a remarkably relevant passage Saint Augustine writes that “it is never licit to kill another: even if he should wish it, indeed if he request it because, hanging between life and death, he begs for help in freeing the soul struggling against the bonds of the body and longing to be released; nor is it licit even when a sick person is no longer able to live”.85 […] True “compassion” leads to sharing another’s pain; it does not kill the person whose suffering we cannot bear. Moreover, the act of euthanasia appears all the more perverse if it is carried out by those, like relatives, who are supposed to treat a family member with patience and love, or by those, such as doctors, who by virtue of their specific profession are supposed to care for the sick person even in the most painful terminal stages. […] God alone has the power over life and death: “It is I who bring both death and life” (Dt 32:39; cf. 2 Kg 5:7; 1 Sam 2:6). But he only exercises this power in accordance with a plan of wisdom and love. When man usurps this power, being enslaved by a foolish and selfish way of thinking, he inevitably uses it for injustice and death. Thus the life of the person who is weak is put into the hands of the one who is strong; in society the sense of justice is lost, and mutual trust, the basis of every authentic interpersonal relationship, is undermined at its root.

If someone has made the decision that they no longer want to live, is it not causing harm to force them to continue suffering? Is it not possible that God has helped them to reach that decision? And does it perhaps not require strength to accept and support their decision? And so God is the only one who can decide over life and death, but who is doing the interpreting? In cases where someone is rushed into an emergency surgery, is that not possibly making a decision “over” God’s? Does someone like the Pope have the final say? If so, perhaps this person should then meet with each individual and decide case by case. This debate about the right to decide over a life encompasses heated topics like abortion and death row. Often the argument, “We can’t play God!” is touted around. But we do it all the time. We make decisions about our lives and others’ lives all the time. Certainly in the medical field that boundary is often tested. We “play God” often, I just think we do not frame it that way.

Perhaps it does come down to being a free-thinking heathen that I do not believe any god or higher power would advocate taking away the right of an individual to choose how to live our their last days or how much they want or need to control their final exit. This is not an easy thing to wrestle with. I am sure it is not an easy thing to decide to do or to support a loved one doing. But many of the most important things in life are not easy.

This has been a particularly difficult piece to write. It has forced me to truly think about what taking control of my death would mean (if I have that option). It has also forced me to think about what it would mean to accept that if those I love do the same. My heart is heavy. This mortality business is a sad one. I have cried more times today re-watching documentaries, re-reading articles, and writing this blog, than I have in a long time. But I know the tears come because there is so much love in my life and, therefore, much to live for and with. That is a beautiful reality. There is also so much to lose. And that, sadly, is also a reality.

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I greatly appreciate you taking the time to read this & look forward to  your responses!

I invite you to follow me on Twitter @PonderMortality

Hospice Explained

There are many misconceptions about hospice. The word itself is often met with fear, even revulsion. For many people, hospice is associated with giving up hope and resigning oneself to death. Often it is seen as a death sentence. While in some ways there is some truth to that, in the sense that a patient gets admitted into hospice when they have a prognosis of six months or less to live, but the focus is NOT on death; it is certainly not about giving up on life. The focus is very much on life and on enhancing the quality of life as much as possible during the last phase of it. Much of the information around hospice, even the most basic, was new to me when I started this project seven months ago. It is quite crazy really. We are all going to die and many of us will end up in a situation where hospice is an incredibly welcome alternative to hospitalization. An understanding of hospice should be public knowledge and certainly should be part of the public conversation. I have come to understand that hospice is not about “giving up hope.” Hope is vital and hospice workers recognize that hope is a powerful force that continues throughout the time of living and the process of dying. Hospice may not offer hope for a cure or recovery, but it offers hope for personal dignity, freedom from invasive procedures and safety. Hospice offers hope for freedom from isolation, abandonment, loneliness, loss of control, physical pain and hope that the family will be nurtured and supported, even after the death of a patient. Hospice neither hastens nor postpones death. Hospice acknowledges that death is a reality and focuses on supporting the patient and their family during the process of dying and then grieving.

On a personal level, witnessing the suffering of people I care about has also motivated me to help clear up the taboo around the subject of hospice. This particular couple I’m thinking of is kind, elderly, and they have welcomed me into their family with open arms and hearts. They have been married for sixty-three years and their utmost desire is to spend time together and for the Yankees to have a fantastic season. That’s oversimplifying, of course, but they have had a full life and at this stage of the game, their desires are quite basic. Their simple desires, however, have been complicated by the husband’s health. He has been in poor health since I met him. The first time we met he was in a nursing facility. He had fallen at home and broken his leg and so he was in this facility recuperating. He was unable to walk and had physical therapy daily. His weak heart complicated the whole recovery.

He moved back home a few months later after the insurance refused to continue paying…and the kids who could/would had contributed as much as they could. Since returning home, his wife has become his full-time caregiver. He can do little on his own. She bathes him, clothes him, cooks for him…while also taking care of the daily tasks of cleaning their home, laundry and shopping etc. This couple, while they have each other, have little support from anyone else. The children who make the most effort live far away and the family that lives nearby is, I suppose, unconcerned or at the very least, uninterested. It’s very difficult for me not to judge and I often find myself ranting about how “wrong” the situation is. The family is a large one and yet these parents (also grandparents and great-grandparents) are essentially left on their own to manage the day-to-day. There is a granddaughter who is very close to them, but she has two young children she is raising on her own while working a full-time job. Time spent with her grandparents is a friendly visit and a chance for the great-grandchildren to be doted on and spoiled! All this to say, that this is likely a very common family situation in America, and while I get frustrated, it is difficult to find a simple solution. I suggested perhaps they hire a nurse to come even three days a week to help, but they live on social security and affording care that is not covered by their insurance is not an option. Surprisingly, the biggest reason for them, primarily the wife, is that they are proud. They are proud of their home and they don’t want to have a stranger around disrupting their sense of home. I can understand that, but at a certain point something has to give!

After several heart-attacks, the husband’s lungs now often fill with fluid and since breaking his leg, he is barely able to walk, even with a walker. The effort to get down the hall from the bedroom or bathroom into the living room, where he sits in his recliner watching T.V. all day (and much of the night), is tremendous. And the person caring for him and helping him maintain his balance so he doesn’t fall again, is his seventy-eight year old wife. Her back and hips are giving her so much trouble and the effort it takes for her to help her eighty-six year old husband in and out of bed or into and out of his chair…well, to be honest, I don’t know how she’s been able to do it day in and day out for well over a year now. With his health continuing to decline, and several ambulance trips to the emergency room later, I brought up the possibility of researching hospice to one of their children. He spoke to one of his brothers who said, “Dad would never agree to that. He would never leave mom.” I was confused by that response until I realized that he was under the impression that “hospice” meant “going to a facility.” The fact is that hospice care is what can allow people to stay at home and to keep their quality of life for as long as possible. In hospice, the patient’s needs and desires come first. In this case, if the husband’s desire is to stay at home, everything is done to help make that possible. Granted, it’s difficult to know when to consider end-of-life care for someone, but everything that I have read and experienced so far, is that the sooner it begins, the better. More often than not, hospice is a last resort and at that point patients are often in great pain or discomfort and “catching up” to pain is almost impossible. If it isn’t managed from early on, pain is difficult to control. I have heard that there are many patients in the New York area (and likely around the country) who are on hospice for only a day or two before they die. The extensive services that hospice can provide are not used as often as they could be and that’s a real shame.

While there are for-profit nursing homes and end-of-life-care facilities, many organizations providing hospice care are funded in part through Medicare and Medicaid. Many insurance policies also cover hospice services. I know that the process of researching hospice for loved ones can be excruciatingly difficult, but it is important for people to know that it is an option. A viable one. And if they cannot afford it, there are many organizations (like the one I volunteer for) that provide hospice services FOR FREE. To die with dignity is a right, not a privilege.

“The goal of hospice is to make sure that all patients who are truly in need of its services receive care regardless of their ability to pay. No one is ever turned away because they cannot pay for our care.”

A little bit of history: The term hospice stems back to medieval times when it was used to describe a place of shelter and rest for weary or sick travelers on long journeys. Today, hospice refers to compassionate care given to people in the final phases of their life in a variety of settings – primarily in homes, and to a lesser degree in hospitals and freestanding inpatient facilities. To qualify for hospice one has to be deemed (by one’s physician and the hospice in-take team) to have six months or less to live. The patient is re-assessed every few months and if still given a prognosis of six months or less, the patient is re-admitted into hospice. There is no time-limit. The two main patients I’ve been visiting have been on hospice for well over six months. Sometimes with all the care and attention given, patients improve and are taken off hospice.

Dame Cicely Saunders founded the first hospice facility, St. Christopher’s Hospice, in England, in 1967. It was the first facility that focused attention on the care of terminally ill patients and their families.

Dame Cicely Saunders. Photo taken in 1999; credit: Carolyn Djanogly

The movement gained momentum in the U.S. through the work of Dr. Elizabeth Kübler-Ross and the founding of the first Hospice Home Care Program of New Haven, CT in 1974. There are now over 2,000 programs in the U.S. This is a wonderful description taken from one of my training manuals:

“Hospice is a “Philosophy of Caring” for dying patients and their families. It recognizes that death is part of the human life cycle and that every person has the right to die with dignity, peace, and comfort. Hospice neither postpones nor hastens death; it exists so that patients and their families might be free to attain a measure of mental and spiritual readiness for death that is satisfactory to them. Bereavement follow-up is also part of the hospice program. Hospice is a team of caregivers serving all people during the end of life’s journey.”

The main point I wish to drive home is that the focus is on QUALITY OF LIFE! Not on death. Death is a reality. It is the inevitable outcome. But until that moment comes, the hospice team works to ensure that the patient and their family experience as high a quality of life as possible, which sometimes includes accepting that death is imminent. The interdisciplinary team is comprised of nurses, physicians, home health aides, social workers, spiritual counselors, a bereavement team and volunteers. The members of the team work individually and together on behalf of the patient and family members, making sure that the patient’s psychosocial, spiritual and physical needs are being met. The team’s activities are coordinated by a registered nurse. The organization I volunteer for is the largest voluntary nonprofit certified home care agency in the country. Hospice is part of what they provide and they oversee over 400 volunteers. The hospice team meets to review the plans for the care of the patient at least every 14 days.The focus is on relieving pain and physical discomfort, providing emotional support to the patient and family, facilitating communication between the patient and family and their doctors, helping with things like writing wills, developing financial plans and designating a healthcare proxy. Hospice also provides (again, from a training manual):

“Medication, equipment and supplies; Expert nursing care; Personal care (including bathing, feeding and dressing); Housekeeping and assistance with daily living; Emotional counseling; Spiritual Care and support; Social work services; Financial counseling; Bereavement care and counseling; Physical, speech, and occupational therapies; Volunteer services and support; Other services as required.”

With the baby-boomers starting to enter into “old age,” the largest population of “old people” in our history, so far, end-of-life care is becoming a larger and more profitable institution. Anything involving aging, death and dying is becoming a place to make money. I have read a number of stories lately accusing the medical and hospice industry of swindling people and taking advantage. While I’m sure that in our profit-crazed society terrible things are happening, it is unfortunate that not enough of the good that hospice does is known or makes the news. From what I have experienced, there is so much good being done! Admittedly, I have had conversations with a number of people about how terrible the experience of dealing with a nursing home was/has been, but no one has yet told me that hospice was a terrible experience. Many of the people I volunteer with are there because someone they loved was on hospice and they now want to give back…and I have to say, in all my years in New York, I have rarely had the experience of walking into a room full of strangers (for several different trainings and lectures) and realizing very quickly that these are my people! Every one whom I’ve interacted with has been a deep, wonderful, loving, grounded, real person; with an open heart AND open eyes. When there’s a room full of artists like that (and I’ve been lucky enough to have experienced that a few times too), magic happens! A room full of hospice workers and volunteers may not create magic or art, but a care, compassion and deep respect for life happens. And that is incredibly inspiring.

I don’t mean to gloss over the unethical things taking place in the medical and/or hospice industry, but I think it is important to also focus on all the good that is done. There are too many sensationalized horror stories out there and not enough celebrating the day-to-day wonderful things that hospice and hospice workers are doing for families. In fact, there is not enough information about hospice in the public consciousness period.

I think about the effort that goes into planning a traditional wedding: the months of effort, the number of expert consultants, the involvement of many family members and friends. We need to embrace that the journey of dying and the journey of grieving require as much care, dedicated time, support and attention. And I believe it is possible to find a way to infuse a similar celebratory and communal spirit into the planning and the process. Life deserves to be celebrated…all aspects and phases of it, including the end.

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Thank you for reading! I look forward to your thoughts, feedback and stories.

I invite you to follow me on Twitter @PonderMortality

Diving In…to Fatherhood, Mortality and Life

I visited my younger brother David and his family last week. He and I took some time to sit and have a conversation:

Yesterday was your birthday and birthdays are often a marker of sorts. Can you talk a little bit about that?

I was thinking about that this morning because yesterday was the first birthday I’ve had as an adult where I wasn’t depressed. I realized it’s because of all the changes this past year. Mostly Vanessa and I now being married, the formality of that, and having Isabel. I would always be saddened by birthdays because it was a reminder of how far away everybody is. Skype with Mama, phone call from Papa…it was always a reminder of how our family, when I was eighteen, just blew up and it never came back together in the same way.

What are some things that have changed in you this year?

Being comfortable with myself and being able to recognize a lot of patterns I’ve been in for a long time.

Did getting married and having a baby accelerate that?

It did accelerated it. That’s a good word. It was a catalyst. The way Isa came into the world, the whole crazy ambulance and last minute hospital trip…all of that…it helps you see what’s important right away.

Five months have passed since Isa’s birth. What is your memory of that experience now, perhaps in the context of this project? A moment like that which is so much about life and is incredibly heightened…I don’t want to say it’s connected to death…but there’s something…

It is connected. They are two sides of the same coin. Definitely. Even in the level of stress and anxiety. Even in the location and the people you engage with. Yes, it was a birth, but we were surrounded by paramedics and doctors and nurses and hospitals, which are really fundamentally places of birth and places of death. Being there for her birth was powerful…and traumatic…(laughs)… I remember our doula was really worried about me after the birth. I remember her asking, “Is he okay? Is he okay?” and just repeating that. I must’ve looked completely shell-shocked.…(laughs)… Right after Isa was born, and everything was okay, I had to go into the bathroom and cry for a good three minutes just, “Aaahhhhhhh! It’s so stressful!” I couldn’t show any stress for Vanessa, or at least I felt like I couldn’t. It was a very happy and a very sad moment at the same time. Right down the middle. I didn’t know who to look at, my daughter or Vanessa? Suddenly I realized, “Oh shit! There’s somebody else now that I have to worry about.”… (laughs)… And it wasn’t a good feeling. I was initially very scared and panicked and nervous. Also watching someone you care about go through labor, it’s very scary from the outside.

What scared you most about it?

It’s just a really powerful, LOUD, and scary thing. You’re palpably out of control and that’s a hard thing to deal with. Even if you’re not somebody who needs to be in control. As adults we take that for granted, being in control and being able to do what we want.

That’s a good point. To circle back to death, do you have a memory of your first experience dealing with death?

I was twelve and I was at the cabin [in the Black Forest in Germany] with Papa. This was seventh grade and I spent most of the year there. Grandma got pretty sick and I remember Papa had to make some phone calls so we drove down to the center of the village and Papa got into a pay phone booth. I remember how quietly upset he was. It became apparent that she had only a month or two left and so then the trip was over. We went back to Chicago. I remember that very clearly. But I’ve been protected from death in a lot of ways. When Cristy, our dog, was put down, I knew what day it was happening but I wasn’t allowed to go. Vanessa’s grandma, who died a few months ago, is the person I’ve been closest to who’s passed away. I was over at her house the day before she passed and witnessed a lot of what the end can be like: excruciating pain and fear and being completely out of control. I’m glad I’m experiencing it now versus when I was younger. It’s one of the most powerful things. When you first started this project, after I read the first post, I was lying in bed and thought about my own mortality real quickly and got this really horrible panicked feeling like, “Oh god! Don’t think about that!!” I worked through the panic, but there’s definitely a sense of, “Holy shit! I don’t like that I don’t have a choice about that.”…(laughs)… It’s really terrifying.*

The fact that you’re…

Yeah, that I’m DEFINITELY gonna…there’s no question. It’s like, “Aaahhhhh! Shit!” …(laughs)… It’s like a flight that is going to leave at some point and you know you’ve got to pack and get ready for it and holy shit there’s tons to do, but you don’t know exactly when it’s going to happen. I don’t like that. I’m kind of a worrier to begin with and that makes me really panic.

Speaking of panic, you told a story yesterday about your experience scuba diving.

Yeah, I guess it’s just a sign of getting older. You sort of weigh things, cost-benefit analysis, constantly. I was really enjoying scuba diving. It was a certification course so it was four dives that increase in depth. After the second dive, the third one was not as enjoyable. I’m swimming along and there’s a really cool looking fish and I’m like, “Ooooh! That’s a cool looking fish!” and the very next thought is, “Hope I don’t die.” And then I keep on going, “Oh! WOW! Look at that! Look at that crazy little thing! What is that?! It’s SO COOL!” and then, “Hope I don’t die.” It’s just constant! I realized I was shaking the whole time and it wasn’t because I was cold. I was just freaked out.

How old were you?

I think I was twenty-two.

For a twenty-two year old to be aware that every second thought was, “Hope I don’t die,” seems quite unique to me. Do you attribute it to a personality thing?

I don’t think it’s a personality thing, I think it’s just so damn unnatural. I think anybody who’s self aware…if you’re fifty feet under the water and you look up, and you’ve got a rusty tank on your back and you’re moving super slowly and there’s nothing but blue abyss around you…if you don’t think about your mortality then, you’re just really dumb or something!

When you described earlier thinking about your mortality and feeling panicked, were you thinking about it in terms of actual possible circumstances?

No, no. I think this might sound strange, but when I was thirteen or fourteen, I thought, “What will life be like when I’m twenty-five?” I just picked that number randomly. I remember I was lying on our lawn, staring up at the trees. I remember exactly what the day was like. And then I had this feeling, “Oh yeah, some day I will be twenty-five, isn’t that gonna be weird.” And then when I was twenty-five I remembered that thought and it made me uncomfortable. It was like, “Oh god! I don’t like that!” Because my next thought is, “What’s life gonna be like when I’m sixty?” And then, “Oh GOD! Don’t think that!!” …(laughs)… It’s really silly, but I think it’s just too much to process. So it’s not thinking about the circumstance or the reality of how painful or sudden death is, it’s more that it’s a fact. It’s real. It’s going to happen. It’s one of the certainties.

It sounds like you’ve been contemplating mortality, in one way or another, for a long time. That makes me wonder, because one of the things I’ve been thinking about is how different our society would be if people did embrace that it IS a fact that we’re going to die. I guess I’m positing that if one does embrace mortality, in some way that helps one live a more fulfilled, more fruitful life. Has that been your experience? Because in some ways it sounds like pondering mortality, for you, is just kind of shitty and anxiety producing! …(both laugh)…

Yeah. …(pause)… You know, when you asked me what my relationship has been like with mortality and the times I’ve been close to it, I forgot about… I just remembered now… a massive, big experience with a peer of mine. Her name is Corinne, Corinne Farmer. She was in my grad school program. There were eight of us and for two years we saw each other fourteen hours a day. The summer we graduated, two or three weeks after, she was killed in Quebec. For me it was a huge sea-change because she was a peer. I knew certain things about her life. I knew that she had a little English bulldog that she cared for. I knew she had a boyfriend who really loved her and who moved to Chicago with her. I knew things about her life. …(pause)… I still have certain things from her that I can’t get rid of, even though we weren’t really close…. I think about her every now and again and how she doesn’t have the option to do what I’m doing and experience what I’m experiencing. Her chapter ended. …(long pause)… So in that sense…(deep breath)…it’s a real reminder for me to try to be as present as I can, but at the same time not SO present that I forget that everything is going to end. I think if people just focus on the present they get too caught up in daily inconveniences. Daily stresses. You can’t really be that present all the time. I don’t think that’s healthy. I think that taking a break every now and then and thinking, “What’s the big picture here?” is really important. I felt like I needed to bring that up…

How did she die?

She was cycling. She was hit by a truck, just coming out of an alley. …(long pause)… It was very surreal.

How did you find out about it?

Through my good friend Emily Powell who was very close with Corinne. She gave me a call. I remember being in complete shock and at the same time being very aware of how devastating this was for Emily. They were very, very close. It’s one of those things where you’re completely shocked and you can hear yourself, there’s a kind of delay. But also I was very censored because I wanted to say the right thing for Emily.

I can see how much that experience with Corinne impacted you. Do you think that part of the reason this experience has sat with you is that in some ways the grieving process is different when it isn’t someone that you’re very close with?

I think what I felt was a really stark emptiness. Corinne and I sometimes would butt heads. She was very strong willed and so am I, so we would get into arguments. There were times I genuinely didn’t like her and I’m sure the feeling was mutual! But when I was dealing with her just being gone, the grief is…it’s just a depressing emptiness and a sadness for the people who really, really cared about her. Her father, for instance. I think sometimes when someone close to you passes the grief can pull you towards other people who are sharing in that grief and you gain some strength from that. Whereas when it’s a colleague or someone you have a connection to in a very real way but you’re not necessarily emotionally that close, it’s just a super depressing chasm. Not that one is better than the other, obviously. For me the biggest change was that it was somebody…. I could see her face, I could hear her laugh. With our grandparents I was prepared because they were old. But I was never prepared for her to just be gone. …(long pause).. It’s very surreal. Uncanny, is a better word. …(long pause)… There’s just nothing pleasant about grief. There’s a loneliness. A heavy loneliness. And there’s an acknowledgment that you can’t do anything to change it. It’s just the way it is. It’s both sweet and super depressing at the same time.

What’s sweet about it?

It’s like nostalgia, right? I forget the exact etymology, the Greek combination of words. It’s something that’s sweet and reminds you of something pleasant but at the same time there’s an awareness that it’s over.

There’s a Portuguese word I heard recently, saudade, that describes a deep nostalgic or melancholic longing for an absent thing or person that one loves. I think that’s similar to what you’re talking about. You know, I think part of this project, for me, is preparing in some way for when our parents die. I am SO NOT ready for that at all and it really freaks me out to think about it. Do you have a similar experience?

Not at all.

Talk to me about that.

It’s just weird. I know it’s going to happen and so I’m not that freaked out about it. It’s not going to change. I can be freaked out about it, but it’s not gonna make an ounce of difference. I know that sounds so simplistic but I’ve always felt that, ever since I was really young. It’s like now that Vanessa’s grandma is gone, I’m so aware that she’ll always be a part of Vanessa. A really big part. There’s no changing that. In the same way that there’s no changing death, there’s no erasing of that time together. I’ll be sad when Papa or Mama won’t be around and Isa does something I wish I could share with them, but I’m not scared about that idea because I know there’s just nothing I can do to stop it.

Since you acknowledge that you can’t stop it, what does the fact of mortality make you think about?

It’s made me really cognizant of action versus inaction. I, like you, though it’s just my assumption of who you are, I think we both suffer a little bit from perfectionism, or a fear of failure, to be more specific. For the longest time I’d prepare so hard to do things. I’d have to be a master at something before I’d try it because I didn’t want to embarrass myself or have that feeling of not doing well. I still remember the feeling of being a crappy basketball player when I was in fourth grade and having Papa watch me. I was horrified! I didn’t want the ball to be in my area. I did my best to NOT be available. …(laughs)… In practice I was great! I remember my coach watching me during the game. He kept me in the whole time. He thought he could just tire me out and then I’d get into it. But it’s something I’ve had for a long time. I don’t want to fail. I’m not comfortable with it. There’s something now about being a dad and realizing how quickly everything can be over, I don’t wait anymore. That’s the biggest thing that I tie to mortality. Action versus inaction. Just diving in even when you’re unprepared. It’s really hard for me but it’s something that I know is good for me to do. My panicking and self-fulfilled stress will always keep me ahead of where I need to be. I don’t need to prepare more than what I have. But I’ve had to learn that the hard way.

The whole question of perfectionism and just diving in is also at the core, for me, personally, with this project. If I’m really honest, I’m trying to kick myself in the ass to do the things I want to do and somehow it’s like, “Well, maybe if I embrace the fact that I’m gonna DIE….” …(both laugh)… Where do you think that perfectionism and fear of failure comes from, for you?

I think it’s family stuff. I think there was this underwritten, non-verbal confirmation that the three of us kids were special. That we were really smart and we were really, really special. Which is a great thing for a kid to feel, but at the same time there was no acknowledgement of the necessity of failure and I felt no support for dealing with that process of being really terrible at something. So there was this combination of elements: pridefulness and fear. And I think those two elements combined are very dangerous. They’re like drugs that work together. I think it might be genetic too, honestly. I remember being so mortified at gymnastics practice. Gymnastics is basically like infancy and toddler life for adults, “Here’s this new movement that you can’t do. Do it!” And you’re body’s like, “Oh my god! I can’t do this! It’s so fucking hard!” And you have to develop all of these new muscles to do it and you look like an idiot for most of the time and finally you do it and it’s awesome. But for ninety percent of the time you’re just falling and hurting yourself, and sometimes you need the pressure of a competition to actually have the energy to do some of these movements. So it’s a lot of stress. I just remember how horrible that was!

I hated it too! I quit gymnastics after my first few competitions!

I wanted to quit! If it wasn’t for my friends, I would’ve quit. So many times! And that’s the thing. I don’t know if it’s just from our childhood and how we were raised or if it’s a genetic thing. Either way, it’s something I really want to change with Isa.

Is there a way to teach about failure?

Absolutely. There is. I think it’s hard to learn when you get older, but anything’s possible, right? The plastic brain. When I read about young entrepreneurs, or when I talk to friends of mine, like Joel, there’s this acknowledgment that you never know what’s going to work so you just try. You try and the important part is seeing what’s working or not and then adjusting. The whole thing is learning. You’re not smart because you can read things right away and do it perfectly the first time. You’re smart if you’re able to notice a pattern and change your behavior or your actions to then change the end result. So I think with kids, a very simple thing to do is to teach them that there’s a process to getting good at something.

That makes so much sense to me. Part of me has always focused on ‘proving’ that I’m good enough, that I know what I’m doing, ‘proving’ that I’m smart enough…which automatically puts me in a defensive position. I’m not sure how all this connects with mortality…

I think I know! When you’re really concerned about proving that you’re good at something or that you’re smart, I think eventually over time you end up delaying things and not taking action. ‘Cause that’s actually the safest thing. If you want to prove that you’re really awesome at something, or that you’re really smart, you definitely don’t want to prove the opposite. That makes you risk adverse. And I think focusing on mortality shakes that. It makes you realize, “Hey! That’s not important.”

I find that many conversations about mortality end up being about how to live life. Among the top five regrets people have on their death beds are: 1) I wish I’d had the courage to live a life true to myself, not the life others expected of me; 2) I wish I didn’t work so hard; 3) I wish I’d had the courage to express my feelings; 4) I wish I had stayed in touch with my friends; and 5) I wish that I had let myself be happier. Those are all pretty basic! I’m very interested in discovering what keeps us in those boxes, what keeps us from living fully and is there something that can shake things up a little bit? I think mortality has the potential to do that. In a perverse way, even if you fuck up really badly, at some point you’re gonna die, so who cares! …(both laugh)

It’s true! There’s a certain freedom there. It reminds me of Tarot, the Fool. But I think that’s a pretty good place to be. Once you’re there, you can focus on what you want to do. My focus since having Isa is on what I’m going to be doing with this time. What opportunities are in front of me? How can I make the most out of them? How can I be present for the people I care about without being too much in my own head? It’s too easy to be stressed out about life. I think that’s one of the curses of first-world existence. You don’t really have any reason to be upset, for the most part. Somebody always has it worse. We’re concerned with a lot of things that don’t ultimately matter. Now, having a tight family unit, I’m really aware of wanting us to be together and wanting to share time. Time is something that’s not forever and is going to run out. For sure. So try to embrace those moments and prepare for enabling them. Work towards that. It’s not just ‘spend time with family,’ it’s about making that a reality. Work your ass of when you need to, work smart, but with that ultimate end goal of being able to spend real time with each other. One of my goals is to work remotely. I want to be able to travel with Isa and Vanessa and with you guys and go different places, spend that core quality time that we got to spend with our parents. Most people don’t get that. Most people don’t know their parents, as kids, I mean. We really spent a lot of time together and that’s something I really want to have. That’s something I really want to give Isa.

Thank you. I think we got a lot of good stuff! I really appreciate you taking the time to talk to me…on your first Father’s Day! Congratulations.

Thanks! Yep. I’m all tapped out. No more sap in this tree! (laughs)

David and Isabel Salomé on their first Father’s Day

 

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Aging and the Cycle of Life

Advancements in modern medicine mean that statistically most of us will die of “old age.” Rather than a quick, sudden death, our health will decline to the point where our bodies can no longer sustain life. Even in my efforts to embrace mortality as part of life, I get a bit depressed thinking about this. It’s not aging that depresses or worries me as much as the thought that my body and/or mind could start falling apart. I don’t want to obsess about growing old and feeble, but I do acknowledge that this possibility, statistically, is in my future. I want to acknowledge it so that I can start to take action now to help my body, mind and spirit stay as healthy as possible for as long as possible. While medicine can prolong our lifespans considerably, what that means is that we will be old longer. Years haven’t been added to our youth! However, there is a lot of information out there now about how to stay healthy and I think it’s critical to start early as it can make a huge difference later, when it really counts.

There are several musts for me to feel my best (in no particular order): eat well; exercise; hydrate; have a fun social life; spend quality time with close friends; spend quality time alone; nurture a strong, loving partnership; have creative projects; travel; sleep; spend time with family; and learn new things. For now those are the key things that come to mind and all those things need to be in balance. At different times the picture of balance will alter. It is not a static, “perfect” image; it is a moving target and, just like life, it flows and changes. For example, I have a fast metabolism and when I was younger I hardly exercised at all. In my “balance picture,” exercise was not very prominent. Now I feel the need for yoga and stretching. My muscles get sore if I sit or stand for too long. Same with food and drink…the reality of hangovers has changed my idea of a good time! Now, having a great time with friends includes waking up the next day without feeling like crap. All this to say, that I don’t have an image of perfection about the “right way” my aging should happen. I am, however, more and more conscious of the need to nourish my body, my spirit and my mind however is needed in the moment. This requires special, deliberate attention. A deep breath relaxes my shoulders. Tilt my head gently left then right to ease neck tension. Drink some water. Another deep breath. Continue writing.

When I see an elderly person I don’t recoil from the fact that that is where I am headed. I observe: if they are particularly hunched over, I straighten up a bit and think about my paternal grandmother who had impeccable posture. In Isabel Allende’s brilliant TED talk, she mentions that Sophia Loren’s advice to aging gracefully is: “Good posture,” and, “Don’t make ‘old people’ noises.” Simple enough! Someone struggling to bend down to pick something up physically fills me with the importance of stretching my body. Injuries aside, we stop being able to move in certain ways because we stop making those particular movements. It is entirely up to us to prioritize caring for our physical bodies. Believe me, I am the first to get lazy or complacent about it until one day I can’t stand it any longer and I force myself to exercise. Then I feel the difference. That then helps me adjust my picture of balance to reflect a greater priority on physical care.

A good friend recently turned me on to a photographer who is photographing centenarians. Her photographs are strikingly beautiful. I find it incredibly powerful to see what happens to the body as we age. As my friend said, “There’s no denying that visual!” We’re constantly bombarded with photographs of young bodies and faces and I am well aware of how much I have changed in comparison to those (including old photographs of myself). But seeing Anastasia Pottinger’s portraits is haunting in a different, quite beautiful way. It’s really something to see these images, to see where we’re all headed should we live that long. Her first model apparently came to her and volunteered to model nude. I hope that when I’m one-hundred-and-one I’ll have that same kind of adventurous, creative spirit!

Photo credit: Anastasia Pottinger

Here’s a link to Anastasia Pottinger’s website for more amazing photographs and information: http://anastasiapottingerphotography.com/gallery/art/centenarians

Speaking of adventurous, creative spirit, that is another thing that definitely needs to be exercised. I have found that I’ve become more cautious as I’ve gotten older. While in many ways I care so much less about what others think of me (such a relief!), I am aware of fear playing a greater role in my life. I’m not entirely sure why. Perhaps it’s because I feel there’s so much at stake? My actions really count now. And in many ways the pressure’s on to do something. Anything! Preferably something meaningful that will also (finally) generate some monetary reward. Truthfully, it’s probably about doing that thing that will give me proof that I’m doing something with my life. Which begs the question, where’s the trial?! However illogical, I can find myself paralyzed for days and days at a time as I try to key in to the what, how and why of something rather than simply take action. For me, the best cure for this is looking to the very young. Children are so full of impulse and desire and they transition seamlessly from one to the next without all the agonizing evaluation and deliberation. I love spending time with children and realize that I have a lot to (re)learn from them. Recognizing my mortality also involves looking at where I’ve been and who I’ve been (rather than solely looking forward), and harnessing that free-er, impulsive, defiant side of me is something that I now consciously strive to exercise. I am inspired by friends who actively live that way and I am encouraged by loved ones who allow me the space to play, risk, fail and succeed.

One of my hospice patients, whom I’ve been visiting for several months, affirmed that I’m at a difficult stage in life. She is ninety-three and suffers from dementia but during this part of our conversation she was very lucid. She told me that she remembers that stage herself. She described it as, “A time of assessing and evaluating which of all of one’s efforts and interests will bear fruit,” and “Determining where to keep one’s attention, what to hold on to and what to let go.” She is a brilliant, highly educated woman with an astounding vocabulary. She was a lawyer all of her professional life and as someone born in the early nineteen twenties, she worked at a time when there were very few female attorneys. She was very much a pioneer. The first time we met I walked into her living room and sat in a chair next to hers and she proceeded to inquire about my level of education and where I had obtained my degree. It felt like a job interview! While I now recognize she was simply attempting to make conversation, at the time I was doing my damndest to not feel horribly incompetent or intimidated! I love that after a few weekly visits our conversations now include intimate thoughts about life and expectations.

On this particular visit, discussing this difficult stage in life, she was lying in bed next to a large window overlooking the Hudson River. It was late afternoon. I confessed to her that sometimes I feel as though I should be doing a better job of all of this, that I feel as though I really should have a clear idea of what my goals are and where I want my life to go. Her eyes lit up in a way I hadn’t seen before. Maybe my honest confession struck something? I asked her if she was someone who always had a clear drive and ambition and vision for her life. To my surprise she said, “No. And I don’t believe anyone does. In hindsight maybe.” I smiled and told her that made me feel better. She smiled back and said, “It’s not a matter of feeling better or worse.” I realized she wasn’t trying to comfort me, she just wanted to clarify the logic, from her perspective. She then said, “My mother always said it was important to determine and differentiate between….” She struggled to find the right words to complete the sentence. I could see she was getting frustrated and the frustration was exhausting her. She repeated the beginning of her sentence but words continued to elude her. It was incredible to see the physical toll this mental strain was taking on her. Within the next minute she seemed to be unaware that I was in the room and she continued to speak about her mother but it was almost unintelligible. As she labored for the words she started to turn away from me towards the window. She strained and struggled to turn to her side, all the while continuing to search for words. She ended up curled in a fetal position with her back to me and the only word I could make out was “mother.” She began to fall asleep so I quietly said goodbye and ended my visit for that day. What a metaphor I had just witnessed! She went from being a brilliant, bold, life-long New Yorker with ninety-three years of advice and wisdom to share, to a small, frail child curled in a fetal position mumbling about her mother. It was endearing and also quite heartbreaking. “O, what a noble mind is here o’er thrown!”

I’m reminded of another of my favorite Shakespearean speeches from As You Like It (II, vii), where Jaques speaks about the seven stages/ages of life:

All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances;
And one man in his time plays many parts,
His acts being seven ages. At first the infant,
Mewling and puking in the nurse’s arms;
Then the whining school-boy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress’ eyebrow. Then a soldier,
Full of strange oaths, and bearded like the pard,
Jealous in honour, sudden and quick in quarrel,
Seeking the bubble reputation
Even in the cannon’s mouth. And then the justice,
In fair round belly with good capon lin’d,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side;
His youthful hose, well sav’d, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion;
Sans teeth, sans eyes, sans taste, sans everything.

I suppose it makes sense that it is in this “middle” stage, where one is most distant both from the beginning and from the end, that it is particularly challenging to remember the value and lessons of those bookends: birth/childhood and death/old age. And it is difficult to remember that life is so cyclical. This long straight line of day after day is in fact a circle…actually, I think it warrants a third dimension, rendering it a sphere. So if life is a sphere, then there is no straight, no correct line to wherever. Ufh. Now what? Dante comes to mind. His Divine Comedy begins:

Nel mezzo del cammin di nostra vita
mi ritrovai per una selva oscura
che la diritta via era smarrita.                           

At the midpoint in the journey of our life
I found myself astray in a dark wood
For the straight path had vanished.
(Creagh and Hollander, 1989)

I take comfort and amusement in that the title of his work is the Divine Comedy (originally it was simply “Comedy”). A sense of humor is certainly needed to navigate all of these questions and thoughts. I just hope I don’t have to travel through the inferno and purgatory to get to my heaven: clarity about and answers to this whole life and mortality business!

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Thank you for reading. I look forward to your feedback, thoughts and stories!

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Did the Person Who Gave Me this Organ Hate Coffee? (and other thoughts)

The setting: a New York City cafe. A bottle of wine. Maya Angelou died today.

One of my closest friends has agreed to let me interview her. She begins:

—I was thinking, I personally find the acute grief and shock over the death of someone who’s eighty-five or ninety, really confusing. I sometimes get the feeling that we’re in a society where people really just want to forget or be in denial that death exists.

—Is there a difference for you between the shock that’s expressed and the grief?

—That’s a really good question.…(pause)… Maybe in part it’s also my particular, I don’t want to say “abnormal”…maybe “a-typical” view.

—What makes you a-typical?

—There are a few things. One, I’m not afraid of death.

—Do you know why?

—I think it has a lot to do with the fact that I had a transplant and so that works on multiple levels. One is that my largest internal organ belongs to someone who died, so I live with death, in that sense, every day. That person had to die in order for me to be alive. And on another level it’s because I don’t have the expectation that I’ll live a long time.

—Can you tell me more about your views on death?

—It’s the one thing we have in common. It’s the one thing we can’t avoid. It’s the one thing we know is going to happen to all of us. Life, in a sense, is much more scary than death is, to me, because with death there’s no mystery other than, in most cases, when it’s going to happen. But you know it’s going to happen. It’s very matter of fact to me, which is why many reactions to death I have a hard time relating to. And even the grief, back to your question, I think maybe I don’t understand grief that much either. Part of it may have to do with being an immigrant as a child and frequently moving and always having this understanding that the people closest to me I couldn’t always have access to. I’m used to the idea that I’ll always be missing people and it’s not because of death necessarily.

—I very much relate to that.

—It’s just…I’m thinking particularly of social media and the certain floods of messages…when Nelson Mandela died, and I actually had a very strong reaction to his death because…(tears up)…there’s no one like Nelson Mandela. But that outpouring of “Oh my God! How could this be happening!” The man was ninety-five years old. He went through so much in his life, physically and emotionally, it’s a miracle that he lived to ninety-five. And if anything my reaction, my response is of gratitude that I was even alive…(tears up)….

—Can you pinpoint what that emotion is?

—It actually has more to do with Nelson Mandela and his life than anything. My feeling is that most people are just pale imitations, very, very pale imitations of what someone like him was. And that makes me sad. I think there would be much less needless death, to connect it back to death, if more people were like him. But so, I don’t mean to sound cold, but so he died. He had to die. We all die. I think that to remember his life is a cause for celebration. Thank god that he existed.

—Absolutely! …Can you talk a bit about your transplant? Can you take me through the journey of that experience both for you and your family?

—My experience, once again, is a-typical. Most people who go through a transplant are much more prepared and come to terms with the fact that they might die, in a way that I didn’t. I didn’t know I was dying because I was so sick and I got sick so quickly that I went from thinking that I had the flu to waking up out of a coma and being told, while on very harsh drugs, that this had happened to me. So I had to learn that this had happened. Many people just deteriorate if they have an organ that’s failing. They often go for years and then they go on the list and then they often go for more years and then, sometimes, they have a transplant. For me this all happened in a matter of days. For my family, in certain respects it was more traumatic, because I didn’t have to deal with all that. I just had to deal with the aftermath. The other thing that is a little bit a-typical is the age when I had my transplant. I think many people are older. I was twenty-four. Now, at forty-six, I’m at an age where I’ve almost lived longer with it than….

—What was some of the “aftermath” that you had to deal with?

—You see stories of transplants in the news or stories in fiction, but the thing that’s often left out of those stories is that once you go through that, everything about you changes. There are physical changes that you go through, there are habits that change. I have to take medication every day and there are certain things in the grand scheme of life and the world where I’m limited. I can’t travel to every country because I can’t have any vaccinations that have live viruses in them. I have to see doctors regularly. I’m a patient for life. So even things like moving, when I moved to New York, that was a big deal because it meant finding new doctors, and dealing with a new healthcare system. The medications I take are the big thing. I don’t have any heavy day-to-day side-effects, but I have to take them every day.

—What were some of the changes you experienced from the medication?

—One of the ones that is not toxic at all but it’s a huge issue, it was at first, especially for me, is one of the medications causes hair growth. When I was first on it, I remember, on my arms, having hair…I looked like a gorilla. It retreated when I started taking smaller doses. I didn’t grow a beard or anything, but it was a huge physical change that I had to deal with. It’s not as bad now, but it’s something that I still notice after over twenty years. And then there are things like I’m at a much higher risk to cancer, particularly skin cancer. I have a risk of diabetes and high blood pressure. That’s the one big thing that I really do have. If I didn’t take blood pressure medication I probably would have a stroke in a short period of time.

—Something you said earlier struck me. You said your parents had more time to adjust to what was happening to you. For you, you went from having the flu to waking up from a coma and you said you weren’t aware that you were “dying”. As a close friend, to hear you say that, it’s quite devastating.

—Yeah. I don’t know if my family would ever want to talk about it, but I know some things and it was horrifying for them. One of the symptoms of end-stage liver failure is that you get mentally and emotionally out of control. This happens to everybody whose liver fails because your liver is no longer filtering any toxins in your body so people get violent and abusive. I don’t remember any of this, but I was tied down and I was yelling and cursing in different languages. At one point I was screaming, SCREAMING, “I’m dying, I’m dying, I’m dying!” I have no memory of that but they have all those memories.

—Do you have any memories at all from that time?

—There were actually days before I went into the hospital when I was apparently walking and talking that I don’t remember. I was living with my parents, I was in graduate school. I’d been sick for days and I have vague recollections of vomiting the night before and my mom coming in to ask if I was okay and me yelling at her to leave me alone. But the next morning I walked into the kitchen and told my parents, “I’m not well. You have to take me to the hospital.” I don’t remember any of that. They took me to the emergency room and apparently I lost my eyesight. And when they finally figured out, “her liver’s not working, she has to have a transplant,” they had to transfer me to the local transplant center. I don’t remember any of that. And I guess sometime after that I went into a coma and, probably thankfully, stopped yelling! But really, they had to tie me down, I was hitting people…. This is all secondhand information. Then from that Tuesday the doctors told my family, “she has until Friday. She can hang on until Friday.” Friday came and went and nothing happened.

—And at this point you were waiting for a liver?

—Yeah. I was so sick that I think I just went to the top of the list for my blood-type and whatever other factors. So by the end of Friday I was still in a coma and my liver still wasn’t working. And then another day went by. And then on Sunday morning I finally went into surgery and was in surgery all day.

—Do you have any recollection of that moment when you woke up and were told that you had a transplant, you had someone else’s liver and this was going to be your new life?

—It’s hard to describe the kinds of drugs I was on at this time. If you can imagine the worst kind of chemically induced alteration to your mind that you’ve ever experienced and if you can just multiply that…(laughs)… I was so doped up and my system was completely crashed. Because unlike most people who have transplants, other than the fact that my liver shut down, I was very, very healthy. So they had to crash my immune system.

—So that you wouldn’t reject this new organ?

—Yeah. And, at first, I did anyway. Most people do. That’s another thing in most fictional stories that they leave out. Most people have some…at least in my day. This was 1992 it was a different era in the technology of transplantation, still the early days. I don’t know with the drugs now if it’s easier to avoid rejection right away. So, I was doped up and high. It took me a long time to understand. I do remember at one point telling someone that I had a kidney transplant, which wasn’t right, obviously. I really had to learn that this had happened to me. It was like starting over. It was really like rebooting and starting from scratch. Because I’d also been gutted. I couldn’t walk, I was on these crazy drugs, I was hallucinating…the first moments I remember I wasn’t really lucid. I thought I was on the ceiling. I wasn’t, but I was in a foreign position ’cause I was in ICU and I was quite upright because there was such a huge risk of pneumonia. I had no immune system and there’s always a risk of pneumonia after surgery. I was so high that I thought I was strapped to some ironing board on the ceiling. I also remember being intubated. I don’t know how long that was after I woke up. And I remember they extubated and that feeling of…and I remember my dad standing there and being told a few times what had happened to me. And then sitting up for the first time…it really was like the first time ever. All of it. And I guess these things do change your perspective on life and death! There are a lot of stories. There are many people, other patients I met during that time, while I was recovering, who died.

—In some ways you’re a walking miracle! That has to change your perspective, not in the sense of feeling obligated to do great things, but the simple reality of what it means to have survived something like that and lived for over twenty years after that.

—Yeah. It’s complicated. When I was reading your Memorial Day blog, one of the things that’s mentioned in that interview is the guilt. It’s not necessarily guilt, but I definitely have that angst sometimes of “why me? I’m not doing anything with my life? Why couldn’t someone else….” I really related to that soldier, to that question of “why did that person die and I live?” And also, around the time that I had my transplant, there was a very close…(tears up)…this is really sad…a very close family friend who was diagnosed with leukemia…(long pause)… and she died at fifty. She was diagnosed the same year I had my transplant and she had different therapies…that was a time of tremendous guilt and desperation, like, “I had my transplant and she NEEDS a transplant.”

—A bone marrow transplant?

—Yes. And that’s really, really hard to get.

—What are your feelings around organ donation? This is another topic very much related to death that people don’t often talk about.

—This is such an issue because I’m not a huge fan of the medical establishment but at the same time the medical establishment saved my life. But I think there are countries in the world where people and governments treat the issue of transplantation differently and just given the way our U.S. medical system is, and given the way we treat health, I think there’s more that we could do to encourage people to be organ donors. It’s not something I’m on a soapbox about, but at the same time I see no reason, I see no logical reason to not have a society where everybody who can be is an organ donor.

—I automatically checked that box when I got my driver’s license and then got a letter confirming I’m an organ donor. I didn’t even think about it. But when I do pause…. I am so connected to my physical body, there is something about thinking about the fact that either I will separate from my body or my body will be this thing I won’t need anymore, that’s a big leap for me. I’m glad I’m on automatic pilot as far as checking that donor box, but…well, you said that your largest internal organ came from someone else. You’re living in a very integrated body in that sense and you’re also very connected to your body and emotions. I’m not sure what the question is here, but how do you experience that quandary?

—I think the fact that physically I was different after I woke up from my transplant is such a huge point. I remember the first time I saw myself in the mirror, it must’ve been at least seventy-two hours–by the time I was able to figure out I was actually a person–and I was bloated from the anesthetic. I looked down at my hands and they were huge. And then every morning they would weigh me and I would lose five to ten pounds a DAY. So I became very, very thin. The thinnest I’ve ever been in my adult life. So I went through all these changes. There are places on my abdomen but also under my arm, because I had to go on bypass so they had to cut a few places on my body, where I was numb. I felt like I had something strapped to my stomach for a long time. The physical changes were so marked. And there are still times when I look at my arms and they don’t look like mine and it’s been almost twenty-two years.

—You know, I think I asked that question because I remember having a conversation with my mom several years ago, just a few blocks from here, in Central Park. She told me that since she was a little girl, she has had a very clear understanding, and I don’t know if “understanding” is quite the right word, but she has had an understanding that she is in a borrowed body. Not that she is separate necessarily, but that she is in a body that’s been loaned to her and it’s her responsibility to take care of it. It was very loving. I thought of that story because in some ways this sounds similar: there’s you, and then there’s your body. Psychologically I think that’s huge. There’s a whole developmental stage when we realize we have hands and they’re connected us, and then I think something does happen where we often become this body. We become that overweight, inflexible, stiff-shouldered being.

—Over the past year I’ve been reading a lot about meditation and Eastern philosophy and some of what you’re saying about your mom reminds me of that. Basically there’s your body and then there’s your self. And then, of course, that begs the question: what is death? And where does the self go? I’m not religious and I can’t believe in life after death as described in any religion that I know about, but at the same time, it does give me pause to think about these people, like Nelson Mandela, all these people with specific personalities and experiences and memories and energy, where does that all go when they die? Even if everything we read in every religious text about life after death is wrong, I can understand why we make that shit up!…(laughter)… ‘Cause how can all of that just disappear? Where do those selves go? But I think that’s a pretty enlightened way to think and to hear that your mom thought that from the time she was young, to know that there’s her self and there’s her body that she’s in….

—Yeah. She’s quite extraordinary…. Did you ever have an interest in finding out where your liver came from? About the donor?

—There was a period of time, a long time ago now but also long after my transplant, when I did try. There’s a protocol you have to follow. You have to write to the organization that deals with the matching and donors, so I wrote to that organization and I wrote a letter to the donor family. I wrote a letter to thank them. I was going through a bad time and it felt like that was a positive gesture to put out there in the universe. But they never…. I can’t imagine, I mean for any donor family I can’t imagine what it must be like, but I can’t imagine what it must be like after more than ten years, to receive a letter. I don’t know for sure if they received it, but they should have. There’s no reason why they shouldn’t have. But again, a lot of years had passed…. I am curious. How does that person affect my identity?

—Especially because we’re finding out more and more how integrated our body is, how cells connect…

—I haven’t done any real research on how people change and find connections, but I think there are documented cases. This could be completely coincidental, but I really like and need coffee. I think I have some dependency on caffeine but coffee, in particular, is my vehicle, my delivery of choice. And I remember after my transplant not liking coffee. I remember it being delivered to me night after night at dinner and me not having any desire, not liking the smell. I do like it again now and am addicted to it again, but I do wonder. It’s such a specific thing. I wonder, did the person who gave me this organ hate coffee? I mean this liver would’ve had to have processed it. It’s also possible that my appetite was just different.

—I remember when my Aunt Adrienne was living with us in Chicago and she had been on a list for a kidney transplant for about three years at that point. We were driving down Lake Shore Drive one night and I don’t remember exactly how old my little brother was at the time–young, in grade school–we were driving and suddenly a young man on a motorcycle flew by us. He was clearly speeding and wasn’t wearing a helmet. My brother said very matter-of-factly with no maliciousness, “there goes Aunt A’s kidney!” There was something so shocking to me about a little kid suddenly seeing another human being and thinking “kidney!” But he was also assessing a very real case of life and death. Here’s a guy being reckless, without a helmet, and there’s a correlation between if this person dies it means someone else could live.

—That’s a great example of how families who live with this kind of thing view life and death in a way that other people don’t think about. I know someone who was waiting for a liver transplant after I had mine. He was at the point where he was carrying a beeper around. I never had to do that. And I remember on New Year’s Eve everyone would go out, but he wouldn’t ’cause it was like prime time for him. A, he needed to be somewhere quiet so he could hear his beeper. And B, how many people tonight might die because of drunk drivers? And every weekend it’s like that, the chances of organs becoming available go up.

—I know you celebrate both your birthday and your transplant day. Is there a difference for you between them?

—No real difference. But on my birthday I don’t care if people know or know how old I am. My transplant day is not information for most people. They don’t need to know. Mainly because I’m afraid I’ll be discriminated against. I struggle because part of me wants to be more of a public advocate, but in the job market, my medical history could be seen as a huge liability…. Life is so valuable, but also so fragile. It’s so easy to take a life. Any stupid little accident could kill you. In a way, life is miraculous and death is the norm. I really do think about death every day. Definitely today with the death of Maya Angelou, such an extraordinary person. What else can we do but celebrate and be thankful that she existed and that we were alive when she was alive?

—So true. And thank you so much for sharing your thoughts and stories. And for being such a phenomenal, a-typical human being!

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Thank you for reading. I welcome your feedback, thoughts, stories…please share them!

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Memorial Day

Today is Memorial Day. For most of us Memorial Day carries with it the beginning of summer and the bonus of a three-day-weekend. We wish each other a “happy Memorial Day!” But what if along with the many military men and women and their families, Memorial Day would truly be a national day of remembrance? What if we gave the dead some space in our hectic lives? Who would I think about? My grandmothers. Aunt A. Junior. My high school friends Dave and Matt. Definitely Dr. Cohen, the only one on this list I had the privilege of saying goodbye to. I miss her and her death still saddens me, but it doesn’t haunt me. My dad wrote to me recently about his father’s death. My grandfather died quite suddenly and unexpectedly of a heart attack, “so that there was no chance to declare the love that went both ways. I’ve never gotten over that.”

It strikes me that many of the servicemen and women also die suddenly and without the chance for goodbyes. I can’t imagine what it must be like to experience death in a war situation. To cause death and experience the deaths of close friends and have it just be “part of what happens.” How do we deal with that? How do they deal with it? And how do we respond?

I have the great fortune of living with and loving a thoughtful, kind and introspective vet. We had a conversation yesterday, in anticipation of Memorial Day, and he agreed I could share part of it here. I’m grateful for his honesty. These are the thoughts of one man who has reflected on Memorial Day for many years. He is not speaking for all vets and this is certainly not research that is meant to represent “the voice of the military.” It is one voice that happens to be very meaningful to me. And since this blog contains my reflections on mortality, asking for his reflections on Memorial Day seemed like a valuable exercise.

What does Memorial Day mean to you?

Remember those who have fallen. Remember those–whether or not you agree with war or with certain policies–remember those who gave their lives for their fellow brethren so they could come home. Also remember the families who lost loved ones.

So it’s specifically military?

Yes. Very much.

And it’s about remembering?

And paying honor. Their bravery, courage and willingness to sacrifice themselves for someone else. Their willingness to try to change the world in the best way they knew how.

How do you, specifically, pay honor?

I pay honor by remembering them. By remembering the fun times, the jokes that were told. I acknowledge who they are. I acknowledge their presence and I acknowledge what they did for me. Because the truth is I wouldn’t be here if it wasn’t for them. But sometimes I feel like the walking dead. My soul is gone. I just exist.

Is that really true?

Yes. Yeah. I feel that sometimes. Very much.

In what aspect?

It’s difficult for me to be present, it’s difficult for me to be happy, it’s difficult for me to enjoy moments because I’m constantly bombarded by thoughts and dreams and nightmares and daily things that make it difficult to exist.

Does a day like tomorrow help lessen that?

No. It worsens it.

So acknowledging it doesn’t make it better?

If I was around other people who were supportive, yeah. But over the years it’s never been that because I’m a Cold War vet. There are many places to go now and connect with vets, but as a Cold War vet I didn’t have that. So unless my friends and I plan to get together (they live all over the U.S.) I spend that day by myself.

Is Memorial Day more about reminiscing, remembering your friends, thinking about moments? Or is more time spent thinking about them in relationship to what their absence means in your life now?

The latter. There are many days I wonder could my life be traded for theirs? I remember the screams and smells, there are physical sensations you just don’t get over. Their absence is very much a part of my life. That’s why my utopia would be, on Memorial Day, for people to have a barbecue but take food to a neighbor whose son or daughter was killed in war. Not just mindlessly go to the shore…. As a young teenager, I didn’t even know what the fuck Memorial Day was! I said “happy Memorial Day” all the time and enjoyed the three-day-weekend. Even when I first joined the army Memorial Day was about the weekend, time off, celebrating. It wasn’t until I first lost someone that I realized just how deep it goes and how deep the tradition is. So in one way I can’t fault civilians. Many people don’t understand the significance. If they really understood what Memorial Day is, they would probably say “how can I help?”

Would there be any benefit to Memorial Day being expanded into a day of remembering loved ones that died, whether or not they were military, making it more of a community time to acknowledge the death of people we loved?

I think it would be a huge thing. Right now I think our culture is very much “what can I do for me” … this would help people come together. But you’re never going to understand what it’s like to lose a fallen comrade. I wouldn’t wish that hell on anybody.

What is usually the leading emotion/feeling for you on Memorial Day?

Guilt. Very much. Followed almost neck in neck by shame. They’re dead and I’m not. It’s all there. It’s all very present. You made a promise to bring them home and to watch their back, and you failed. Survivor’s guilt, anger, shame, hopelessness.

Can you also pinpoint a more distant, perhaps hidden emotion?

Pride and honor…in having known those who got tested and who said “yes.” You never know until you get tested whether you’ll really go there, really give your life to save someone else. So there’s honor in having known some really wonderful guys. At the same time, they’re no longer here. One I’m thinking of right now…such a great guy…there’s nothing I could’ve done. I miss him, but I know I’m not responsible. He made the decision to try to make a difference…now, the fact that he got stuck behind enemy lines and we couldn’t bring him back, I feel horrifically guilty about that. This is a buddy I loved and adored and I couldn’t even bring his body back. He was dragged through the streets and…this is the kind of stuff I live with. You don’t want to die, but you also don’t want to lose someone close, someone whose family you’ve met and you know all their dreams and fears and hopes and all of a sudden, all of that goes away. This person was larger than life and suddenly they’re gone. What happened?

What has been your experience of reconnecting with friends you served with on Memorial Day?

It’s a lot of fun. Back in the day we always tested each other physically, mentally, emotionally…it’s fun to look back on all that and realize how stupid we were. Having real “boy time”…those guys would call it something different but it’s boy time ’cause we acted like fucking kids. But it’s great. Reminiscing and remembering that at one point I served with such great men. Very powerful men. But at the same time even though we’re there talking to each other about wives and changes we’ve made in our lives, there’s always something missing. It’s like trying to have a party in a sauna. There’s something heavy there.

What is that heaviness?

It’s that subject in the room that so present but no one wants to bring up.

The people who aren’t there with you?

Right. Because it’s just missing. It’s just missing. We all acknowledge the fact that we’re all here and all alive, but it’s hard to be fully alive without that person…those people.

How is it when you’re on your own on Memorial Day?

Scary.

Are you able to be more present with that heaviness you talked about when you’re on your own?

No. Nope. I go to dark places when I’m on my own. It’s easier to cope with those places when I’m with people who understand.

Do you have any kind of ritual for yourself?

I do and it’s private. It’s very, very private. It keeps me sane, a little bit. And when I wake up the next morning I know the ritual was successful. (laughs)

How do you live with death?

I fear it. I know how fragile life is. I want to enjoy this moment while it lasts.

Why do you fear it?

I fear how ugly it’ll be. I want to be surrounded by my loved ones…I fear I’ll die horrifically without them present. I’ve seen a lot of death and witnessed how people can die…I fear how death will come. I fear how violent it could be. I fear that there may actually be a hell and I may go there.

So there’s an element of religion or spirituality there?

No. That’s just the mindchatter. The guilt. As a vet I know how present death is and I appreciate life so much more because of that.

For those who don’t know anyone who died in combat, maybe don’t even know someone who served, there isn’t that personal connection. Shouldn’t this just be a national day to think about people who died or families who lost loved ones?

But how you died is part of it. Memorial Day is about people who were killed in combat. If you get blown up by an IED… I mean on Mother’s Day we acknowledge mothers and grandmothers and nurturers. But Memorial Day is about those who served and died in combat, those who made that sacrifice. Originally Memorial Day weekend was a time for the community to get together to remember those who died, to be with families who lost loved ones. But to see “Happy Memorial Day! Reymour and Flanigan are having a sale!”… I mean, wow.

Do you think that having something like Memorial Day is important in our culture?

Most definitely. I have a huge resentment towards Raymour and Flanigan, and other companies with their peppy ads about sales. Everything is so commercialized. If my step-dad or my mom were to pass away, on every anniversary I would think of them and thank them for all they did to provide for me. And on that anniversary I’d get melancholy. That’s just how it goes. And that’s how it is for me on Memorial Day. But by remembering the countless soldiers we’ve lost and the countless families who’ve lost children and parents and siblings, if we look at that and acknowledge that on a yearly basis, maybe at some point that will happen semi-annually, and maybe that would become quarterly and maybe then it would be weekly and maybe one day it would become daily. And once it becomes something we acknowledge daily, maybe then people would remind themselves why it’s such insanity to go to war in the first place. But if three-quarters of the country just sees this as a three-day weekend and shopping, then we’re in big trouble.

So it is very important to think about the reality of loss and death if anything is going to change?

Yes. Absolutely. And it’s not about don’t say “happy” Memorial Day. The point is, have your barbecue, have your family time and gatherings, but take time to think about what this weekend is about. And even better, take the time to see if you can offer help to a family that lost a loved one in war.

Thank you love. I really appreciate how candid you are.

Always!

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This TED talk is incredibly thought-provoking and insightful. It’s a powerful addendum to this reflection on Memorial Day. Sebastian Junger is a journalist, documentarian and writer…and a wonderful speaker. Here’s his talk “Why Veterans Miss War”: http://www.ted.com/talks/sebastian_junger_why_veterans_miss_war#t-771881

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Thank you for reading. I welcome your feedback, thoughts, stories…please share them!

You can also follow me on Twitter @PonderMortality

A Beginning

First, a little story:

Many years ago we were on a family vacation in Italy. My little brother, who was about three at the time, decided he needed a haircut. A determined little guy, he took measures into his own hands: he carried a chair over to the sink, climbed up and picked up my dad’s razor. I walked into our hotel room to see my little bother staring at his own reflection. There was blood dripping down his forehead and off the end of his nose. He stood there, frozen. I swooped him up and laid him down on the bed, grabbed a towel and began to pat the wound. It was only a surface wound, but shaving off a chunk of skin near his scalp meant lots of blood. There was considerable commotion as I ran to find my mom. She rushed in with our third sibling and we all stood around the bed, trying to reassure my little brother that he would be alright. He was quite composed but his relief was palpable when our father finally rushed into the room. He was a bit out of breath as he had heard only that his son had had an accident and was bleeding. My little brother looked up at our father and with a perfect British accent (since we were living in England at the time) said, weakly, “Daddy! I’m glad you’re here…I’m nearly dead!” He was completely serious but I think the rest of us must have done our best not to laugh. Over the years this has become a famous family story…my brother’s first experience of being on his deathbed. Hilarious in retrospect, but in the moment, probably not at all funny for him.

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I began this Mortality Project because I want to discover the meaning of life. It feels ridiculous to write that out, to admit that. I can’t tell if it’s completely infantile or if I’m joining the ranks of many a great thinker and artist who also embarked on quests to answer that very question: what is the meaning of life? What is the point to all of this cyclical stuff? Generation after generation, year after year, season after season, day after day, hour after hour, minute after minute…. What really changes? A lot! What stays the same? Also, quite a lot. Death, dying and mortality have been pushed out of sight (and out of mind) in our society and I believe that is in part why it’s difficult to see and embrace change. If we stay complacent, do what has been done before us, everything will be safe and easy and comfortable. Death is uncomfortable. Death is a stark reminder that things not only change, but END. Embracing death means embracing how precious each moment of life is, being aware that we can choose to live fully and consciously and passionately. That’s a lot of pressure! Or is it? Does it just feel like pressure because it’s so foreign, so unknown, so out-of-comfort? How much could I really get done in a day, in an afternoon, in an hour, if I truly embraced that this is NOW? This is the moment that counts. This is the moment where I choose to live fully and to take action, or, to blindly go along “knowing” that I can do whatever “later.” The point isn’t to become a workaholic or not enjoy resting or vegging (one of my favorite things to do!). It’s about being aware that each moment, each breath is now. I feel the air enter my nostrils and fill my lungs. That sensation is happening now, in this moment. The sun suddenly appears from behind a cloud and suddenly the room is brighter and I feel more awake. It also isn’t the point to focus solely on a legacy and doing only meaningful work. But there is something useful to thinking about that every once in a while. Perhaps it wouldn’t be a bad thing if there were reminders for us every so often. Reminders along the lines of this rather whimsically written note on this window:

Photo: Lucy Di Rosa

…but instead our society shrinks from thinking about death and mortality.

Beginnings. They’re exciting. Full of possibility. Of late, however, I’ve mostly found them scary. It’s taken me ages to start writing this blog, for example. I’m unsure if it’s the new beginning, the change, that’s scary or if it’s the inevitable end that this change requires. This time in my life feels replete with endings and beginnings. The cycles are spinning faster and faster and I have a sense that increasing my facility to deal with beginnings and endings would be of great help! Perhaps the way one deals with beginnings is representative of how one deals with endings, or, more precisely, THE END? If so, mine would involve procrastination, pondering, avoidance, deep examination, curiosity, fear, along with lots of cleaning and laundry before taking the leap, making a decision and then taking action! My experience so far is that endings in life often “happen.” The end of relationships can happen to you. The end of school happens to you. I suppose your own death happens to you as well, though there is that “letting go” element that is often talked about. Beginnings, on the other hand, require an element of choice. Unless an end is so strong that it forces a new beginning, I find that making changes and choices in life can be put off for a long time!

It isn’t entirely clear to me yet why my curiosity and instincts led me to begin exploring death and dying as a way to understand the change-cycles in life. Part of what drew me to mortality is that it is something we will all experience. As the first of the Buddhist Nine Contemplations of Death teaches us: Death is Inevitable. It is something that unites us all and yet it is hardly ever spoken about. It is not a topic that’s consciously present. Endings too are full of excitement, fear, loss, possibility and the unknown, but it’s easier to categorize endings as “bad” and beginnings as “good.” Spending time with my new baby niece a few weeks ago, there is no doubt that new beginnings, birth, is miraculous and joyful. Seeing this sparkling baby smiling up at me and looking around wondrously at the world, made me bubble over with joy. I mean, look at that face!

Photo: David M. Krell

Death, on the other hand, is painful. But that pain is also very full. It’s full of love, loss, memories and feelings. I believe there is also a benefit to differentiating between death and grief. Perhaps the intensity of grief is what surrounds death with such a dark cloud. Perhaps it’s possible for death to be its own thing, it’s own experience, followed by loss and grief? Grief is an emotion so deep and powerful that when in the throes of it you can’t escape the fact that you’re alive and feeling! Extreme pain, extreme joy, extreme love, extreme beauty, extreme sadness…each of the moments where I’ve experienced those feelings (sometimes simultaneously) are memories that I carry with me. They are the moments that add richness to my life. They are actually often the moments of endings and beginnings, those change-cycle times. These are the moments I will likely think about at the end of my life…so perhaps it’s good to have as many change-cycle moments as possible?

All of these questions led me to begin training and working as a hospice volunteer. What better way to understand death more than by learning from those in the process of dying? One thing that is clear so far in all of my research and conversations is that part of having a peaceful death (and life) is acceptance. The process of acceptance can be difficult and I’m sure that many die without attaining it. I hope for myself that I do. I hope I have the ability to accept what’s happening so that I can be fully present in my final days and moments, say my goodbyes, be filled with gratitude for the life I lived, feel proud, and depart feeling comforted, loved and fulfilled.

There are people who hate goodbyes. They’re the ones who disappear at the moment of giving hugs at the airport. For me goodbyes are important. And beautiful. Every time I say goodbye to my mom, without fail, we cry. It makes me smile now as I think about it. It’s not that the moment of goodbye is enjoyable, but I’m grateful to feel so deeply and fully even if it’s painful. I want that experience when I die. I want the chance to consciously say “goodbye, I love you,” to those I hold dear. Will it be fun? Will it feel good? Probably not. Am I enjoying thinking about it now? No. But I don’t want to avoid thinking about it just to avoid the feelings that come with it. I don’t particularly want to linger on these feelings either, but there is something about thinking through my final wishes that feels very important. I certainly plan to have those conversations with my parents and siblings (watch out guys!).

After so many months of training and visiting hospice patients and surrounding myself with the reality of death (which is actually around us all the time if we’re willing to see it), it is impossible for me to not have these conversations with the people I love. It matters. What we want during our dying matters. It may not be possible for a variety of reasons, but why not take the time to think about it a little now so that it’s not a complete mystery when it comes? Why not communicate about it so that perhaps it becomes less taboo and less feared? The end of life will come to us all. It is something we will all experience. And I think it can be an incredible part of our journey if we enter into it consciously (NOT necessarily willingly!). And still, the point is: Death is Inevitable.

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Thank you for reading. I’m very interested in your feedback, thoughts, stories…please share them!

You can also follow me on Twitter @PonderMortality