Once you’ve come to a place of peace with your own imminent death, it is much harder to accept life. My body was failing, and I did not want heroic measures taken to prolong what I was told was increasingly likely; at 24 years old I signed my Do Not Resuscitate papers.
It is impossible to explain the agony of a hospital day to those who have never been bedbound. Your back and then sides hurt from the pressure of the bed and the weight of your own bones and diminishing muscles. When breathing hurts, you stop breathing as deeply, and then you shake with fevers. Minutes, hours and days blend together. Time is too slow and too fast. You close your eyes to try to escape, or you watch the second hand of the clock on the wall tick by. You stop feeling the pinch of the phlebotomy needles, you learn to detach from your body, and you start to dream of death. Absence from this miserable reality becomes a glorious fantasy. I awoke with silent tears of sadness that my wish to drift off in my sleep had not been granted, again and again.
When I first went to the ER, I initially agreed to humor my EMT partner at the time. I figured that the hospital was so close to home, I would just get checked out unofficially and then walk home if I had too. It was the end of my shift, and I was barely able to lift my share of our human cargo. I hadn’t eaten in days. In fact, I’d barely eaten at all in weeks and I was thin and pale and weak. But, a childhood punctuated by illness had taught me that no matter how bad it gets, hospitals are the worst possible place to be. And, surgery only begets surgery. Despite having been told as a child that I likely wouldn’t live past 30, I’d managed to become healthy, powerful, and fit. I had been a lifelong athlete, albiet interupted by hospital stays. And, now, after spending years relatively free from illness, I didn’t want to admit how sick I had become.
I didn’t come out of the hospital for half a year, including too many ICU days. I had severe disease to my small and large intestines requiring numerous resections, culminating in an ileostomy. I had memory problems from hypoxia, a new hearing deficit from toxic medications. And, I was severely depressed. But, I did not die.
The problem with not dying, is that you have to start planning a life. Assembling a life that’s been disassembled is an unimaginably harrowing task. Where do you even start?
In acute rehab, I found movement to be the only answer to every question. Just. Keep. Moving.
I decided that I would start by walking home. And, I promised myself that I would never be still again. Not for one single day.
When I was strong enough to ride a bicycle, I found joy again. For the first time since I had welcomed death, I was alive and wanting more. Velocity is freedom, and exertion is a reminder that I am alive. I never wanted to stop riding. As long as I keep moving, nothing else can touch me.
But, death lingers like a sad boyfriend that doesn’t want to say goodbye at the end of a night, when he knows the breakup is coming. Throughout the years since that episode of illness, I still find myself sometimes wishing to not wake up when it all seems too much to handle. Life isn’t easy, and being having a chronic illness is emotionally taxing to downright painful.
Or, I feel guilty for having not died. If I had died, I couldn’t have messed up that latest minor thing and so and so wouldn’t be mad at me.
Most of all, sometimes at night I go back to that dark place, and I need to remind myself that I am indeed alive and I’m not still back in that hospital room.
Exertion reminds me that I am alive.
In cycling, popular language use glorifies “pain” and “suffering”. We talk about pain faces to describe the grimace of a hard race effort, we describe intervals as being “uncomfortable” or “pushing up until it hurts” to describe the sensation of finding one’s lactate threshold.
Exertion is not pain. Effort is not “uncomfortable”. Pain is the feeling of broken bones, grinding cartilage, a torn muscle. It is different than the feeling of being alive that comes from pushing yourself harder than you thought you could. These are the sensations of having a body. This is being lucky enough to be capable of pushing your physical limits. We choose these sensations, even seek them out. And, unlike true pain, you can chose to make it end at any time, simply by stopping pedaling.
I don’t want to stop. When I need to remind myself that I am alive, that I have a body that moves, I go to the bike or the gym. I push myself harder, forcing myself to be present. I meditate on the increasing awareness of each muscle group, that creeping feeling of oxygen hunger and desperation after tipping over that anaerobic line. If I just keep moving, I can hold everything else at bay for a while and just be alive.