Saga of a Woman

Fall 2001, shortly before my big brother died from MS (Multiple Sclerosis) - induced complications, I was diagnosed with the same. I had started having symptoms like left side weakness and vertigo that spring, but I was too busy being a Public Ally and a mom to sweat getting it checked out.

Let me digress. Public Allies is an AmeriCorps program that prepares young people for a career in community service. Allies are placed in a local non- profit for 10 months and have leadership, diversity, etc. trainings. President Obama and the first lady were very involved with the Chicago chapter.

It was actually on one of our retreats that I really started to worry. We had a nighttime hike in the snow with lanterns. I couldn’t keep my balance, couldn’t hold on to my lantern, couldn’t keep up with the group. It was the hardest hike I’ve ever been on and I hiked to a mountain summit in Colorado! It was also the hike I’m most grateful I went on.

By the time I made it to the neurologist I’d already confirmed the diagnosis in my mind. I sat down in his office and actually said, “I have MS, do whatever tests you need to do to prove it. When the doctor confirmed it, the next week, I bought a plant and got a tattoo. When I got the MRI films back, my friend Megan came over and we drank wine and laughed at how crazy and alien-like my brain and its lesions looked.

I’ve been progressing slowly but surely. My left side is f#kd. My leg is numb, stiff and weak. The only way I can walk at all is with a cane I call Levi and I swing my leg around instead of lifting it. I can’t wiggle my toes or step over anything on the floor. My son, bless his soul, jokes about how ANYTHING on the floor completely foils me.

Sometimes, sadly, more and more often, I use a wheelchair. My doctor had been writing orders for wheelchairs for a couple years and I would never fill them because I knew if I had it I’d use it. Unfortunately, surgery (I’m the Bionic woman), a subdural hematoma, and an exacerbation kept me off my feet long enough that when I first got to in- patient rehab I had to practice standing! For the love of God, standing.

So I left Froedtert with a wheelchair. It sucks as much as I expected. I can’t volunteer much at my daughter’s school because her class is on the 3rd floor and there are no elevators. When I use it in the house I smash my hands in doorways. And few places are handicap accessible. I got stuck in an “accessible” bathroom stall a few weeks ago. The nice woman that came to my rescue had to lift the chair over the toilet because I had to pull it further in so I could close the door. I’ll admit it was fun to hold Scrappy’s leash and have him run down the street pulling me (it was late so no traffic).

I’m going to be getting a power chair. Wooo! I’m too damn young for a power chair, right? Another really fun thing about being crippled is I have gained a ton of weight from inactivity. So I have an appointment at the Phat Clinic next month. The “ph” is just to make me feel better. I can’t wait to see how I lose weight without exercise. Ta-Ta!