MS Acceptance…

Because of its unpredictability, MS is never far from my thoughts. It’s like someone tapping you on the shoulder and saying, “don’t forget, you have MS, remember?” MS seems to provide me with a never-ending to-do list (or a no-longer-can-do list!)

I find that the hardest thing about being sick is that I don’t know how I am going to be from hour-to-hour not to mention day-to-day. I think the hardest thing for me, and probably for lots of individuals with MS, is accepting the uncertainty or even randomness of the disease. I find myself asking, will I ever be able to accept this randomness?

I guess all I can do is try.

I find that by accepting my illness as being a part of who I am, I’m able to adjust accordingly. Don’t get me wrong, I still get angry and sad about it. And I’ll never buy the bullshit that some people peddle about MS being a blessing in disguise. But letting MS be a part of me is my way of getting on with my life.

“Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.” -- Michael J. Fox

Perspective

My mom recently posted an article that she came across about positivity in the MS  community, which got me thinking about my own perspective on MS. I have a hard time relating to the endless positivity that seems to permeate the MS community, at least as reflected in the National MS Society publications. This can be helpful but places too high of expectations on those of us that are dealing with more advanced forms of the disease (we won’t be running marathons anytime soon). It would be nice to see a more “real” and balanced perspective.

This article points out that positivity sells; the “I have MS but it doesn’t have me” mentality. As if you have a choice in the matter. This almost relentless positivity can have the opposite effect. If this person with MS can run marathons, what’s wrong with me that I can’t? Am I not trying hard enough? I read once that someone was actually thankful they were diagnosed with MS because it changed how they look at and lived their life. Well, that’s a nice soundbite. 

The pressure is almost toxic.

I encourage you to look outside of this social media phenomenon where only the good times are posted about and the goal is to show everyone how well you are doing. Let’s see the woman who ran her first marathon with MS but let’s also see the people who fight hard every day and don’t get better but have learned to adapt.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” - Mary Anne Radmacher