When a person is faced with the shattering reality of imminent death, what goes through his or her mind? In 2013, I had no idea.
Two years ago today, Lisa Choueke Blank, a beautiful and dynamic girl in her early thirties and one of my closest friends, died of Melanoma. During the last year of her life, I spent as much time with her as I could, and one thing she admitted to me during those bleak days was that she was struggling to communicate with friends and family about her illness. Always a big believer in the value of support groups, I quickly found one for cancer patients in their 20s-30s and suggested we go together.
Naively, I accompanied Lisa with enough optimism and eagerness for the both of us, buoyed by the knowledge that we were doing something productive and helpful. It wasn't until we arrived that the stark reality of how sick the other attendees were truly sunk in, and suddenly I realized the experience was going to be a lot darker and more intense than I had anticipated. The boy sitting next to me was going through his second bout with cancer that had left him bald, with sickly pale skin and a frail body swimming in his clothes. The young girl sitting directly across from me had a brain tumor that limited her mobility, leaving her with partial facial paralysis and a constantly tearing eye duct.
As we went around the room, all six participants introduced themselves and described their illnesses. When it was my turn, I explained that I had come to support my friend, and was taken aback when the mediator immediately asked me to leave. She explained that I had been misinformed, that this group did not include family and friends, and I wouldn't be able to stay for the duration. I was about to collect my things when the other attendees began to insist that it was fine for me to stay -- they were OK with it. The moderator acquiesced, but requested that I neither share nor respond. I felt incredibly uncomfortable and frankly, scared for what was to come. But I also didn't want to be disrespectful, so I just stayed put.
I quickly discovered that there is a reason that there are groups that include families and friends, and those that do not. In the absence of loved ones, participants don't have to censor themselves and their darkest fears. They don't have to soften their language for the sake of others. As I sat there, I struggled to listen to their stories about the daily horrors of their existence -- one woman described how her breasts started disintegrating after her double mastectomy. For those three hours, I did not say a single word. I was so nervous and unsure of what to do with myself; I remember feeling like my neck was frozen and I could barely turn to face each speaker.
Today, I don't know which of the participants are still alive, I don't know if any of them are. But if their experiences can inspire any of you the way they inspired me, then I know a piece of them continues.
So what did I learn listening to six people my age share their feelings about dying? A few common themes arose: the absurdity of self-blame, a reverence of the ordinary, and the infinite value of facing our impermanence.
It's not our fault
I had always assumed that I would be incredibly angry if I was diagnosed with an illness and I therefore expected that the attendees would express intense rage at the world for their misfortune. But the most shocking realization I had in that room was that every single one of those people believed that in some way, they themselves were responsible for what was happening. I distinctly remember one woman expressing her guilt about moving to a Los Angeles shortly before her diagnosis because she believed the smog contributed to the development of her disease. Others believed their sickness was a punishment for some unidentified transgression they must have committed in their lives.
Initially aghast at the participants' harsh beliefs, I reflected on how much of my own life is plagued by self-criticism. Unfortunately, we live in a society that allows us to believe that we are somehow at fault when our wiring is faulty. Consider the social stigma towards mental illness: We can accept that kidneys and livers sometimes fail to work properly, yet we are judgmental when a different and infinitely more complex organ malfunctions? While I won't belittle the responsibility we all have to lead healthy lives, the truth is that so much is out of our control. Still, we want to believe we have some measure of control, and so we choose to blame ourselves as an expression of that need.
We will all be making mistakes (or perceived mistakes) for the rest of our lives and there is no way to determine which exact actions or reactions are responsible for the catastrophes we face. So, what can we do? We can try, as much as possible, to respond with compassion and forgiveness -- towards ourselves, towards each other, and towards the world. What can you forgive yourself for today? What act of compassion can you perform right now?
One man's trash...
During the support group session, one young woman undergoing treatment for stage 4 breast cancer expressed her frustration with dating: "When do you tell him that you might die any day? Is it the first date, the third date?" They all spoke of how desperately they wanted to go on dates and fall in love despite the extreme physical and mental challenges that prevented them from doing so. A single thirty year old at the time, I was constantly frustrated with the dating process but I had never realized that simply being able to date -- to go out with another person, learn about them, share experiences, and connect -- was in itself a privilege.
One woman talked about the mind-numbing boredom of undergoing hours and hours of treatments. Another spoke of how much he wished he could do anything other than lie on the couch, watch TV, and feel like a drain on his family's resources. They all wanted a sense of purpose, to have something to do other than wait to live or die but they didn't have the physical capacity to actually do anything. The everyday responsibilities we see as tedious and burdensome; they see as a welcome distraction. What ordinary experiences in our lives could we recognize as a sources of joy and gratitude rather than those of resistance and annoyance?
As I listened to them describe the painful onslaughts they were experiencing as their bodies refused to cooperate, I felt like I was holding a happy meal in a room full of starving people. Personally, I've spent most of my life taking out all my fears and emotions on my body, but that night -- for the first time in my entire life -- I sat in front of my huge close mirror and thought, "Thank you." I examined the hair on my arms and legs and instead of thinking of how badly I needed to get it rid of it, I stopped and saw it for was it was: a sign of health. I looked at my breasts and instead of scrutinizing their shape or size, I thanked them for being there and not having cancer. We see our bodies as inadequate; they see our bodies as winning lottery tickets. If we could see our lives through their eyes, how joyous would everyday living be?
Looking death in the face
During her first bout with melanoma, Lisa once wrote to a friend: "I am scared of it, and thinking of it, and I never have thought of it before. There is nothing wrong with thinking about death -- actually one should -- it can help you have a better life."
On that day in the support group, I spent three hours confronted with the impending death of six beautiful, kind, and intelligent people, one of whom was my very good friend. Lisa had been my brother's girlfriend in her tweens, a spirited traveler and loving wife in her twenties, and the devoted mother of an incredibly smart and strong-willed boy in her thirties. I simply didn't believe death could or would happen to her.
Lisa passed away June 13, 2012, and losing her made me realize that I can live my life pretending death wont 'happen' to me or those I love, making choices out of fear of the inevitable and ignorance of reality OR I can recognize that I won't always be here and make choices that reflect how I want to spend the time I have. No longer will I be a passive participant and watch as the years slip away. I want to relish them.
While she was alive, Lisa and I spent hours discussing "the secret of happiness," but it was in her death that I found mine. Every day, I work on accepting and loving myself just as I am, accepting and loving life just as it is. I try to see my body as my friend and treat it with the kindness and respect it deserves. I surround myself with people who generously give me their time and attention and I give it back to them in return. I try to recognize that each and every human suffers in one way or another, and that we are all deserving of compassion.
I changed the way I live my life because of that day I spent in the support group with Lisa. If you had been in the room that day, how would your life look now?
"Because you are alive, everything is possible" Thich Nhat Hahn
In Loving Memory of Lisa Choueke Blank 1/28/1979 - 6/13/2014