MS showed up with a vengeance in September of 1999.
It hit in my brainstem and I was completely debilitated overnight. In the space of 5 hours or so, I went from going to bed fine to waking up convulsing, severe vertigo, my eyes jerking around, sirens ringing in my ears, numb from my chest down, and absolutely no coordinated control of my voluntary muscles.
I didn’t have muscle weakness…just no control. I had the strength to stand, but not the balance…even holding on to something I would end up on the floor in less than a minute. Nauseatingly dizzy.
That was my life for 6 months to one degree or another…and then I slowly got better. Until the next ‘episode’, ‘attack’, ‘exacerbation’, or whatever you want to call it.
I know a pet peeve for some people with MS is when someone says something along the line of ‘You don’t look sick’, but for me I would have loved to be at that point. And I did eventually get there. As of late I am developing a pet peeve along the same line, but much different at the same time.
My current med has worked extremely well for me for over 10 years. No attacks, no new lesions, no active lesions, no brain atrophy and no side effects. It has allowed my body to heal to a certain degree and I have regained ground that I thought was lost forever.
And I ride a bicycle.
It’s a two wheeled recumbent, and I do some serious wobbling at times, but it is a bicycle and I do ride it. That seems to be the problem for some folks.
Because I am doing well and can do things that some people with MS can’t, I have been rebuffed by some with MS. I have been told that I can’t really understand what it is like to truly suffer with MS. I’ve been told that I am bragging when I talk about what I can do. I have been told that my experiences aren’t valid and that I shouldn’t share them in the same circles that ‘real MS people’ do.
That’s pretty harsh and it’s not true. It is true that people wouldn’t know I have MS if I didn’t tell them, but that hasn’t always been the case. I don’t tell people for sympathy (I hate that), and I don’t tell them to brag. One reason I tell people I have MS is to help bring awareness to the disease. But the main reason I tell people I have MS is to speak hope into a more-often-than-not seemingly hopeless situation. MS nearly killed me, and now I use MS as a platform to speak life for today and hope for tomorrow. Tomorrow is going to come, and how we face today will, and does, have an effect on what kind of tomorrow it will be.
I would never tell someone in a wheelchair that they shouldn’t share their story, or that their experiences aren’t valid because they can’t ride a bike. I would be vilified if I did that, and rightfully so. So why would it be OK to dismiss my MS story simply because I ride a bike.
We can’t know somebody by looking at their ‘today’. All of our yesterday’s make us who we are today. And today launches us into tomorrow….so please….
Give me a break!