Uncertainty is a blessing
I believe in my experience of uncertainty. It’s not a belief that I ever wanted, but it is something that I have experienced with such visceral force that I have no choice but to believe. Uncertainty is the guiding principle of my life. I can’t even say that the only thing certain is uncertainty because I could wake up tomorrow and everything could be as it was prior to December 2005. Before December 2005 I knew that I was supposed to be there for my sister and her kids, I was supposed to be the one with the answers, the money, the energy to help them all negotiate life either with a mental illness or with a mother with mental illness. I was supposed to be independent and strong, I was supposed to help fix things, move things, plan things. So I am not uncertain that one day I will wake up and everything will be as before, it’s possible or perhaps not possible. In reality, life was not that certain before but at least I knew my place in it. Life had a sheen of certainty; it was easy to pretend that some certainty existed. Then I started showing symptoms of multiple sclerosis. I spent the next two years in diagnostic limbo. Training boot camp for a life of uncertainty; a life with multiple sclerosis.
The uncertainty of daily life is that I don’t know if I will be able to stand when I wake up each day. I don’t know when I will lose my voice. I don’t know when I will lose my balance. I slur my words at unpredictable moments and worst of all, some days I just can’t think clearly. Will I end up in a wheel chair? Will I lose control of my bladder? Should I sell my house now and get one that is wheelchair accessible just in case? Will I lose my sight? If so, it would be easier to stay in the house I’ve lived in for the last 10 years. Who will be there for my sister and her kids if any of this happens?
These are questions that anyone, and maybe everyone, should ask. The problem is that once you get the diagnosis of multiple sclerosis, one or more of these events are just about inevitable. The uncertainty of life is your constant companion. A few days of routine can’t fool you. There is always a reminder. The medication you take everyday, pins and needles in your legs, foot drop, slurring words. Something will always remind you that there is nothing certain about this body and this mind.
And then I remember that there are worse kinds of multiple sclerosis. There is progressive multiple sclerosis and there is nothing uncertain about that, you are going to go downhill. I have relapsing remitting multiple sclerosis which means there are periods of disease and disability and then periods of relative health. During the periods of relative health when there is so much uncertainty about the future it is good to remember that such uncertainty is a blessing.