You know it is funny. When we are young we believe that our own experiences are the norm. If you grew up with one parent or both you thought that everyone else had the same. When I was young I remember being shocked and confused to discover that other children had very different experiences in their homes. One belief that on some level has carried on through my life is my height. In my family my Dad is 6’6” and my brother 6’3”, I am a mere 6’, which, while intellectually I know is quite tall for a woman, in my head I think I’m short. Comparatively speaking, to the people I spend a lot of time with, I am the shrimp.
When you live a life of illness your normal alters completely. The very simple acts that I once took for granted are now the most complicated daily choices I make. I used to get up, hop in the shower, get ready and leave the house. Just like everyone else. The shower was, after all, how you woke up in the morning, getting clean was just a side effect. Now the act of preparing for the outside world is a monumental task that, like any big project, has to be pulled into the tiny pieces that are taken on one by one. Christine Miserandino, a brilliant woman who suffers from lupus proposed “The Spoon Theory” in which she explained that for the chronically ill, everything in life is a transaction. The simple act of taking a shower has to be carefully considered against the energy or “spoons” that I have available that day. Some days I find myself debating whether a shower or a meal is more important as I only have enough spoons for one. It is a complete alteration in how you view the world. Which in turn creates a gap between myself and those around me. Not because either of us desire the separation, instead because my experience of the world diverges greatly from that of a healthy person.
Even though as we age our view of the world broadens and we understand that everyone has their own experiences and perspectives, unless we put effort into constantly reminding ourselves of this, we eventually fall into the habit of only thinking of our “normal.” What is interesting is that our normal changes as our lives alter. We get married or divorced, we have children or spend our time traveling the world. In my case, I went from a very healthy active life, to a life of great struggle with my health. Not many people believe that seeing several doctors over a week is normal. Most people would be disturbed by having multiple tests such as a CT or MRI or even a spinal tap, but for me that is just a normal Wednesday.
Oh crap, is it Wednesday already?
This week my normal involves waiting for an appointment with a neurologist, which can be a long wait, to discover whether or not he believes, as the doctor I saw last week does, that I have MS. Now in whose world would this not be dire news? Mine. I have so many unexplained symptoms from seizures to migraines to chronic pain to a lack of immune system to a destroyed back. All of which seem to be of a mystery origin. Now when my health first took a nose dive and these mysteries started to appear they did search through just about every possible disease and every single possible diagnosis was devastating. They have proposed lupus, Parkinsons, Lime disease, fibromyalgia, epilepsy, and so much more. They even thought that I had MS previously. In fact, my brain scan, according to my doctor, looked like “classic MS,” he said we would just do a spinal tap to confirm. He sounded quite confident in his diagnosis, but the spinal tap came back negative. He basically shrugged, informed me he didn’t have any other ideas and sent me packing. This was not the first nor the last time a doctor basically gave up on me. At the time I was half frustrated with the lack of answers and half relieved, because who on earth wants MS?
Now I find myself back in the same conundrum. Of course I want an answer. Living a life in which I am treated for random symptoms without any clear diagnosis lends itself to being treated basically by a series of guesses. It’s all trial and error. Try anti seizure medications, do they help? No. Well maybe this one? Sort of? Well, maybe that isn’t the problem, we’ll take you off that. How about this med for migraines? And so on, for years! An answer, something they can discover and have all these mysteries fall into a straight line would be amazing. Still, who in their right mind would hope they have MS? So I sit with myself, bouncing between living a life of trial by fire with my body and mind, or a terrible disease. Neither is a great option, but I’m not the hot mess that anyone else would be in the same situation, because this is my normal.