Living life and respecting limits

abilityI have been disabled for four weeks. I was hit hard by the flu and a series of opportunistic infections that followed it. This is likely a temporary situation, but one that has made me reflect on my life, and how I attach value to it.

My disability is minor compared to the challenges of some friends and acquaintances, but the reality of it has been sobering for me. I am not able to do any serious physical tasks. Sweeping and washing the kitchen floor wore me out for the day. I am bored in ways I am unused to. My house is a mess that I don’t like. Most of the things I do for fun or money, I can’t do. These things have defined my image of myself. I have had to rethink that. Age and a supportive family have made it easier to adjust, but it has not been fun.

I have come to believe our ideas about disability are shaped using our present selves as a model. This can lead to proclamations that “life wouldn’t be worth living if I couldn’t do x“. I have always believed my friends when they told me that life is worth living regardless of the limitations they deal with, but now I understand it a little.

Flying like a hawk would be exhilarating. Swimming like a dolphin would be a delight. Am I disabled because I can’t fly or swim deep in the ocean? I wish I had the body and stamina  of an Olympic athlete. I don’t. Does that make me disabled? No. And I don’t think anyone would suggest that I am. We simply accept that there are differences in kind in the case of hawks and dolphins and in genetic luck and significant effort in the case of high performance athletes. So why do we find it so hard to accept that we can all have complete, fulfilled lives whatever our ability?

Once I made it through the debilitating fevers and pain of my illness, I had to learn to live with a total lack of energy. As someone who has tended to fill his days with many things, the fact that I could only manage one basic task a day, was infuriating at first. However, with the support and acceptance of my family, I was able to find a peace in it after a couple of weeks. I was able to accept the new normal. If I can only do one thing in a day, then I want to make sure that one thing has value to me.

I have adapted. That’s what we do as humans. That’s our superpower. We are able to consciously adapt to as well as challenge our limitations. Can’t fly? Well, the birds are beautiful to watch and look at all the amazing things I can do. And I have an idea for a machine to get up there.

I don’t want to pretend that losing abilities is fun or nice. It’s not. I know this in my own small way through my illness, but I also know this from friends who have suffered greater losses. I have a friend whose MS has meant that he is no longer able to go whitewater canoeing. That was a big loss for him (as it would be for me), but he doesn’t dwell on what he can’t do, he dives full on into what he can do.

My friend Marilyn lived with ever more debilitating conditions over many years. Her family turned their back on her because they couldn’t handle it. Yet she was one of the most positive people I know and an incredible theologian and thinker. We had many great conversations about god and science and life. Eventually, her body couldn’t take anymore, but she was a wonderful, engaged person to the end.

Is it all acceptance and happiness? Of course not. Like everyone, there is fear and frustration and depression about the things that can’t be done. But that is like everyone. Everyone gets down sometimes, sometimes clinically depressed. We need friends and treatment, not a sympathetic nod and assisted suicide. I’ve not heard anyone advocating assisted suicide for everyone who wants to die (i.e. the clinically depressed), just for those who are perceived as disabled and depressed. This says far more about us as a society and about our difficulty in imagining a life other than the one we are already living.

The problem is that we are thinking out of our current set of abilities and not about how we would adapt to our new reality and the things we would still be able to achieve. Amyotrophic lateral sclerosis (ALS) has been the poster child disease for advocates of assisted suicide, but I can say with certainty that physics and our understanding of the universe would be much poorer if not for the work of Stephen Hawking. He suffered terrible depression after the diagnosis, but had great support from his family and has now lived with ALS for 50 years. His achievements in physics during that time are legendary.

We don’t like changes that are forced upon us. We especially don’t like new limits. This is totally understandable. However, I would encourage you to take a little time to consider the things you would do if you were suddenly unable to walk or see or use your hands (choose one or two, or something else). Take it as a positive exercise. How would your positive self spend her/his time? It won’t come to you all at once because you have lots of other things to think about, but return to the thought occasionally and give it some time.

My experiences with illness this winter and my conversations with various friends over the years have led to a much more hopeful and nuanced view of ability. I find the greatest joy and peace in working hard to achieve things of significance while at the same time accepting the things I can’t do.