What Ifs and Wheelchairs

I don’t think that questioning and fretting over “what ifs” is something unique to having a chronic illness. These what ifs can arise from either the consequences of our choices or the consequences of our circumstances. I definitely struggle with both of these as they relate to my health struggles. I ask “what if” I didn’t have this burden in my life, and I ask “what if” about choices I have made that probably made my condition worse.

Wondering and worrying about why I got sick has been challenging to work through. Should I look for a meaning in it or did it just happen? Is there a reason it happened when it did or a reason it happened at all? I may not learn the answers to those questions in this lifetime, but I can certainly think of silver linings to what has happened to me over the past 6 years. However, is difficult to think that these observed positives outweigh the reality of living with my conditions. Trying to be positive is a way I can gain some comfort, but dwelling on the “why am I sick?” question can get a little too deep for my struggling brain.

 Each of our lives is made up of individual decisions. Some of those decisions yield wonderful things. Some not so wonderful things. And some decisions don’t really seem to yield much of a result at all. Like what you had for lunch. Actually, strike that, sometimes what I have for lunch tries to reanimate and eat me right back. No rhyme or reason. Something that usually sits fine with me can make me incredibly sick. Life likes to keep me on my toes like that. Please nobody use this as an excuse to suggest I cut out dairy or gluten or take this supplement or that supplement. I beg you. (see my post titled “You Should Try”). But I digress…

This tendency that we as humans have to look to our past and fixate on either the choices we made or our circumstances to torment ourselves in the present has reared its particularly ugly head when it comes to processing my illness. I can spend an unhealthy amount of time going through a list of “what ifs”. What if I had been diagnosed sooner? What if I hadn’t tried graded exercise therapy and entered a push-crash cycle that left me with pretty diminished function? What if one of the first doctors I saw knew how to help me? This particular “what if” leaves me incredibly angry. It leaves me angry to think that so many doctors dismissed my symptoms. Barely ordered tests and did hardly any follow-up. It upsets me that the “care” they are taught to provide weakened and damaged my body. It is a prime example of why spending so much time worrying and stewing on these outcomes is damaging. I should not be wasting the emotional energy I have on this anger. I do not know these medical practitioners personally. Maybe they truly were doing their best with the knowledge they had. I cannot place the blame of my condition solely at their feet. Even though I want to. Even though it gives my general anger over being sick a target. It doesn’t accomplish anything, and those negative emotions eat away at my spirit.

So the “what ifs” continue. What if I hadn’t needed to cram my wedding planning into 3 months, working long hours and taking classes, leading to the initial physical crash that started me down this unfortunate and treacherous road? What if I had listened to the people who love me and quit my job and moved home rather than run myself into the ground as I had over and over again? What if What if What if? There are so many of these questions. So many scenarios where I made a choice that harmed my health or didn’t have the tools necessary to help myself. Where I refused to accept what had happened to me and continued on pushing my body beyond its limits day after day. I do get angry with myself. I do blame myself and feel guilt over my choices. Being this ill is not without consequence for the people in my life. And the fact that something I did might have made me less capable is difficult to deal with.  

But again, what does this anger and pointing fingers and guilt accomplish? What does playing out the poor choices I made or the conditions that I found myself in over and over again afford me now? My body is sick. Saying that (I guess typing it) is incredibly challenging. It makes me a little nauseous to see those words. But it is what it is. This is phrase I use a lot when my family or friends ask me how I am feeling or expresses their concern or sadness over how I am feeling. I will usually laugh and say “It is what it is”. And it some ways, that can be helpful. It IS what it is. Medical science does not yet have the answer for me. I am being treated by some of the best doctors in the field, and there are some brilliant researchers on the case. They give me hope. But living day to day, tackling the challenges that come as they do is all that I ask of myself right now. Does it SUCK to have to use a wheelchair outside of my house. You bet your bottom dollar it does! Does my heart burn with shame when my mom is fighting to get my wheelchair in and out of the car while I sit in the front seat. Uh yeah that would be a resounding yes. But that is the situation I am in right now. Did some of the choices I made early in my disease make me worse? Yes. Did doctors not knowing what the hell they were talking about help the situation? Absolutely Not. But is there anything that I can do about that now? Nope.

Now I don’t have a crystal ball. I have a debilitating chronic illness that can get worse with age. There is no telling for certain where I would be today, even if I had done everything perfectly those first few years of being sick. Even if I was as disciplined as the most schooled person on the planet about monitoring my heart rate, resting at appropriate intervals, never allowing my body to crash…my body isn’t healthy. My immune system doesn’t function correctly. My nervous system is all kinds of messed up. So spending time blaming myself for the condition that I am in now seems pretty counterproductive. I think the A type, control-freak part of my personality wants to think that I am completely in command of my circumstances. So if some part of my circumstances suck, it must all be my fault. Which also means that I should be able to fix it. Neither of those things are true. Not to say that choices do not matter. They absolutely do. But once the choice has been made and the consequences wrought, the only thing that we can do is learn from what we did. What is in our control and what is out of our control? If it is in our control, do better. If it is out of our control, let it go.  I can be better about pacing today. I can listen to my body better today than I did yesterday.  I can advocate with my doctors and let go of some of the guilt eating me alive.

Another thing I definitely knew before getting sick but came to see in even more stark terms is the benefit to thinking long term. Thinking long term with a condition like this can be dauting. It is a constant battle between planning a fantasy life where you miraculously get better (even like a little bit better) and a more practical life where this disease is factored in. Making the sacrifice to take care of my body in the short term will pay off in the long term. And again, that isn’t just for a chronic illness. Yes, in the moment I want to do that extra activity that I know will push my body over the edge. I want that instant gratification. I don’t want my illness running my life and telling me what I can and can’t do. I don’t want to be at home in bed by myself. But that is unfortunately where I need to spend the majority of my time so that I can still enjoy bits of my life. That is something the what ifs can teach me. Asking myself the what if about my past can show me that yes, I have been in a habit of pushing myself, and that pushing has had some bad consequences. So let’s learn from that consequence rather than asking myself the same what if question in 5 years.

It is hard not to let the consequences of actions rob us of further joy in the present. You already made the choice. The outcomes of those choices are already staring you in the face. Learn from them. Grow from them. And then don’t torture yourself with it anymore. There will always be another what if around the corner. Another choice where hindsight might be unforgiving. Rather than asking myself what if, I want to ask myself “What now?” What can I do NOW? Where did I go wrong and what can that teach me about being better? And that doesn’t’ just apply to how I treat my body.