“To be or not to be. That is the question.”
It is the opening of Act III of William Shakespeare’s play, Hamlet. Admittedly, it is taking dubious license to reapply this to the plight of multiple sclerosis, but it would seem “nobler” to take the path toward positive thinking rather than “suffer the slings and arrows” of MS.
After being told I “might” have MS, I adopted an attitude that the less I found out about it, the less likely I was to exhibit the symptoms. In other words, reading about the symptoms might cause me to imagine in a psychosomatic way that some ache or pain was MS when I was actually relatively healthy. I subscribed to the mantra “not everything is caused by MS, you know.” I believed knowledge – in this case – was counterproductive. Although I learned some things about MS, I generally avoided reading about it: the fear of creating mock symptoms was too great.
On the other hand, if something odd (healthwise) started to manifest itself in suspicious ways, I would see my doctor to determine if it was MS or something unrelated. Interestingly, the current lack of knowledge about MS means medical professionals most often investigate and eliminate other causes before ascribing the symptom to MS.
Today, I am not so sure “ignorance is bliss” as “tis folly to be wise” 1 when that mindset seems to be counterproductive regarding multiple sclerosis; if not most things in life.
Eventually, I had to stop working after becoming acutely impacted by MS. It was then I began voraciously learning more about the disease. I soon found I could not glean enough information to satisfy my desire to know. MS controlled me. It was time to start manipulating MS.
It saddened me that I could no longer do the work I loved. Heck, I could not work at all. However, I could keep mentally active and find a purpose in life, if I redefined myself. So, I did. It was actually not conscious other than my desire to just keep moving forward. (Ironically, MS can make even rolling over in bed difficult!)
I am uncertain of the day I starting using the tools that remained in my bag but I was definitely aggressive about it. I became a voice: an advocate; an activist for those impacted by MS.
My actions ranged from organizing and producing a conference for men with MS to simple one-on-one discussions about MS with others who had MS to actively seeking financial relief in an area not typically (or easily) recognized as a health accommodation: the Utilities’ cost of air conditioning.
Looking back, I unknowingly decided “to be.” I wanted to do all I could to keep from being the invalid. Yes: both meanings.
The attitude is healthy and all of us – MS afflicted or not – are better off using the abilities we have rather than bemoan the abilities we lost. Excuses for not doing a thing is okay but for doing nothing . . . well, that is what gave the word “excuse” such a bad reputation.
What are you doing?
1 see Thomas Gray, “Ode on a Distant Prospect of Eton College”