How I've Thought About Death and Its Influence on How I Live
When I was a kid, every once in a while the realization that I’ll die one day would suddenly hit me, freezing me in my tracks. My heart pounded in my chest and terror paralyzed me. The world seemed to stop for a few seconds as my feelings pinballed, bouncing from helplessness to fear and back again until dopamine flooded my brain, slowing my heart rate and finally calming me. But that won’t be for ages. No need to worry about that now. Those soothing thoughts soon brought me back to normal. Once again I was kicking stones along a path, riding my bike uptown for candy, and wondering how close it was to dinnertime. Nobody wore a watch. We tracked the sun and the growling of our stomachs.
A child's perspective
I was a healthy ten-year-old, active and outdoorsy like every kid was in 1967. I tanned deeply in summer and bundled up with three layers of clothes and four scarves to play in the snow in winter, happy to run and jump, but dreaming of being able to fly at night. If only I could flap my arms like a bird and break the bonds of gravity. I blew hard into the cold air, watching my breath become visible, pretending I was smoking a cigarette. It was hard, very hard, to imagine not breathing, not moving, nor hearing, seeing, and eating. Sometimes I tried to feign death, lying on the cool parquet floor of the family room and folding my arms over my chest. I’d see how long I could hold my breath. The dead hold it forever. I made it about a minute, the same as holding my breath underwater in our pool. But I knew it just wasn’t the same. Being dead was hard when you were still alive.
Diagnosis and reality
Such thoughts of death dissolved as my life left behind the wonderings of childhood, replaced by hard reality, the mundane, practical, and utterly unimaginative harshness that made me ache for my dream-filled childhood. Then chronic illness hit me as suddenly as the death realization in my youth, paralyzing me once again with fear and helplessness. I wondered if I might die. Never again did I dream that I might fly. I no longer remembered my dreams. To keep from descending into a deep depression, I calmed my mind and narrowed my focus, only concerning myself with office work by day and research at night. Multiple sclerosis was only a term floating overhead, not yet attached definitely as a diagnosis wasn’t yet made. It was my out, my legitimate denial. Not only would I not die, I would not have MS, either.
Looking for comfort
Sometime within the next five years, I touched faith, needing comfort I either couldn’t muster for myself or couldn’t get from others. I fell back on the Catholicism of my youth and in particular the nurturing image of Mary. I needed parents. I bought a rosary and was surprised that I remembered my rosary prayers after thirty-five years. Saying them calmed my mind and helped me fall asleep. But it didn’t last. I never could sustain faith for very long. But I simply didn’t need it anymore.
Life and death just became more perplexing
The way I thought about death changed when I saw both my parents die. There it was right in front of me. There was a life and suddenly sickness. Then they were gone. It didn’t make anything clearer. Life and death just became more perplexing. Less meaningful. Especially when my mother died. You go along for many years without much change, then one day you get a pain in your side. The doctor says I’m sorry, we can’t do anything for you. You’ve got maybe three months. That’s it? I thought while I gazed at my mother’s freshly dead corpse at hospice. No retrospective at MOMA? No curated exhibit? My Life as Art, a celebration of (your name here). I would celebrate her in my memory every day for as long as I have a memory. She lived. She was loved. She died.
A closer look at death
What is death now to me? I don’t need to think about what it is, there isn’t any mystery there. I see dead things all the time. It’s nature using organic decay to nourish new growth. Lots of people tend to make a much bigger deal out of it than that. Now I think in terms of time. How much I have left and what I want to do with it. Having MS and various other conditions is an aggravation, a distraction from using what time I have left in a meaningful way. Moments of joy, peace, and painlessness. Death is an end to that. I’d rather live. But if I can’t live forever, then I want to live consciously. Eat too much and make somebody laugh. Help my 100-year-old neighbor, write my second novel and binge-watch Love It or List It. It would be great if I could get one good night’s sleep before I croak, too. That would be really nice.
Have you ever experienced any of the following financial struggles due to your MS?