MS is isolating-nerve pain doesn't turn your skin neon orange, weak limbs don't glow in the dark, and eye and ear neuropathy don't advertise with a golden halo. I admit, it might be nice if what I am experiencing made itself known without going through the laundry list of each symptom when I am asked the simple question, "How are you today." At what point in responding to this question authentically (i.e. the nerve pain in my arms is severe, but the occipital neuralgia seems a little better, while the sound sensitivity is making me think about how I can quiet the darn birds outside my window, and on and on) does the asker' s eyes start to glaze over. I used to just say, 'fine,' and have moved on to the slightly more honest, "hanging in there," but in reality, I haven't the words to explain what living with the MonSter is like. People would truly look at me like a freak if I told them my body was taken over by an alien presence eight years ago and I fight every day to free myself from alien control (this could be a much more entertaining answer, I will have to consider it.
The visible side of my illness is the pale purple braces sprinkled with a butterfly pattern that I wear on my forearms and my legs--known in the biz as ankle/foot orthotics (AFOs) and FAOs (forearm)--not to mention the tilt wheelchair with its multiple wheels, loud gear shifts, and generally fascinating gizmos. To add to this, I often wear wrap around dark sunglasses due to light sensitivity (that is a nice way of describing the stabbing pain and sea sicky sensation that comes from sunshine, flourescent lights, and light in general). Quite the picture--I recently saw a t-shirt that said, Keep Staring at me, I Might Do a Trick. I want to put this on a placard and attach it to my chair.
A while back, at the local Target, with braces+chair+ dark glasses, Oh My!, two women came walking towards me, one said loudly--"Get out of the way, that lady is blind!" How hilarious--I would have some mad wheelchair skills if I could maneuver through a crowded store while blind and without some type of guide. The two women leapt out of my way safely, I am happy to report, although it was very tempting to veer towards them and see how fast they could move.
A tremendous pull exists between seeking acknowledgment of my illness and the desire to move through the world like a 'regular' person. Do I want to be the poster child for disability and illness on my next trip to the market, the park, or a party? Some questions from the public seem pushy and rude, while in others I detect a more sympathetic motive. Whatever their intent, I often feel like a giant spotlight follows me around, "everyone look at the gimp in the chair, what will she do next?" If someone sees me struggling, should they ignore it, offer to help, smile sympathetically, or ask probing questions?
This past weekend was a big birthday for my Dad and we had a reunion with family I hadn't seen in eight years. I dreaded the looks on their faces when they saw me in my chair for the first time. Wonderfully, all they seemed to see was me; after hugs, and settling in together several of them asked me gentle questions about my health. I could feel their love and concern and didn't experience any pity.
My life is more than different with this MonSter hanging around. I can't escape it, not even for a minute, but I can choose to lead a full life.