Head Up | Rachel McDonnell

I first met Asghar and Susanna when I was referred to them to do the website and signage for Asghar’s new fitness studio. As someone who has dealt with multiple sclerosis and primarily rolls around in a wheelchair, I’m not a frequent visitor to gyms of any kind. (Active avoidance may best describe my gym/exercise strategy) But, in I rolled to the Fitness Loft, ready to give this charming fitness studio my best “online” workout. If I wasn’t a fitness queen myself, I could certainly conjure and create an image of one for this business.

Asghar wasted no time turning the focus from the cyber-world to the physical He’s a gracious host who makes a mean cup of tea and makes you feel right at home. Before I know it, I’m eating a banana and talking about my MS. Warning: watch out when you snack at the Fitness Loft. Invariably, Asghar takes those happy, healthy calories back out of you in the form of exercise.

The physical world, what a body can do and feel and achieve, was something I largely ignored. From my point of view, my MS had chipped away at my ability. I went from a cane, to two canes, to a walker, to a lot of time in a wheelchair as MS claimed my balance, stamina and muscle control.

I made the comment I sort of lived from the “head up.” I had a certain flippant pride in saying it. My body may be out of control, but I was making the most of it - staying busy and intellectually engaged while ignoring the constant noise of my body.

What I didn’t quite expect was the sincere look of absolute sadness and horror my sarcasm yielded from Asghar. It took me back and made me start to think about the real meaning my attitude signaled to others (as well as myself).

I had accepted and acclimated to disintegration. I had fought my MS, sure. I had pushed and plodded and struggled for over 10 years. But I think I always expected that MS would win. I wanted a strategy for keeping what ground I could, but didn’t really think about an offensive strategy. I was too....tired...too...disabled...too...deep in disease to expect much. My neurologist had once said “MS won’t kill you, but it is a progressive disease.”

And progressive it was; sapping my energy, my ability and progressively making my world smaller and smaller. My physical body had become a series of setbacks. Falls, a broken nose, being stuck, being in pain, being inexorably more limited by the disease.

Asghar didn’t buy my “head’s up” philosophy. As a fitness trainer, this made sense. His business was the mind and body working together and creating a whole. But I wasn’t someone who needed to simply get in shape or lose weight, I was someone who had a hard time getting out of a chair.  I was someone stuck in a body that came with disappointment, pain, and a large cache of drugs just to make it through the day.

When Asghar said “he didn’t see disability, he sees ability,” I was naturally skeptical, but I also realized I hadn’t taken inventory of my actual ability in a long time. It felt good to look at what I had rather than focus on what I’d lost.

I’ll write more about what I’m learning. I’m adding to my list of “abilities” all the time. For someone who hates (and doesn’t really get) sports analogies - I’m on offense. I am punching and kicking (well, sort of kicking) the “dis” ability out of my way. I can improve. I am improving. I didn’t know I could until I tried.

I thought about including a photo, but the best way to get this started is to take a picture of my feet. Long ignored, frequently cursed and the starting point of my MS symptoms. I plan on becoming reacquainted with these old friends - and definitely will be asking more of them!