My sister, Marcie is 20 years my senior and has shown me, for nearly my entire life, what it is to be a trailblazer. She was an athlete before women were “allowed” to be athletes. Then she was a sports journalist when I’m guessing there weren’t many women in the locker rooms on the writer side either. I have watched her life from a distance, learning all the while how to be a confident woman, unafraid to stand up for what she believes in. When I was in grade school, Marcie was diagnosed with MS. For every day since then, she has taught me the real, true and honest definition of strength. Today, she’s agreed to share her story with us. –Cristie
There must have been a gnat in my eye.
As I ran out to third base for the bottom of the seventh in July of 1985, the vision in my left eye blurred. I couldn’t blink it away and all the searching by my shortstop did not uncover any winged critters. In, literally, a blink of an eye my life changed.
The initial diagnoses was optic neuritis and a round of prednisone cleared the acute problem, but my vision didn’t come all the way back. When the same issue popped up two months later, my eye doctor referred me to a neurologist and MS and I became bedfellows. I could no longer play rec softball or basketball and by 1989 those vision problems put an end to my sports writing career as I could no longer drive at night and had to remain within a small geographic area.
My course of MS, at diagnosis, was Relapsing-Remitting, which means you have “episodes”.
(We interrupt this otherwise moderate essay for a rant. Episode. Seriously, Docs, you call it an episode? My body is waging war with itself, destroying the myelin sheath that insulates the nerves, causing short circuits in my body’s central message center, leaving chaos in it’s wake. It is, at best, an incursion but let’s call it what it is – an attack. We now return to our irregularly scheduled guest blogger.)
When you have an attack, you treat the symptoms, and the function, in my case vision, comes back. But it never comes back all the way.
This all sounds dour, but good things did come from these life changes. In 1994 I gave birth to our son. If my sports writing career had not been derailed by MS I would have continued on a path that demanded long hours, late nights and travel.
MS had forced my husband and I to adjust to a lower income, so it was a no-brainer that I would stop free-lancing and stay home with my son. My husband and I coached his baseball teams. I became a league coordinator and, ultimately, the baseball commissioner for the local youth sports organization. I taught him to play basketball and volunteered at his schools, which evolved into a job as a substitute teacher. All of these life decisions required negotiations with my MS.
I don’t really live with MS so much as I make accommodations.
I played catch with my son until his arm got too strong for my reflexes to compensate for my delayed visual response. Say what? See, I couldn’t see the ball until it was on top of me. No problem when he was four but a real problem by age five. It’s subtle and you make accommodations. We bought a pitch back for those times when Daddy wasn’t available. I could shoot hoops with him, but couldn’t play one-on-one because if you get overheated it exacerbates your symptoms.
In 2000 the MS started requiring more accommodations. I developed foot drop and had to start wearing an orthotic on my right leg. I could still drive, walk, coach and haul 50-pound bags of drying agent and field lime up hills to baseball equipment boxes. But, I could no longer go running, so I turned o a stationary bike and continued to do weight work. I have to find a way to stay fit. It is my weapon. But there are accommodations.
More accommodations followed. First came the cane, then the elbow crutch and now a walker inside and a scooter outside. The orthotic grew from ankle-foot to knee-ankle -foot. I still drove, but we had to have a left foot accelerator installed in the car. (It comes out for my husband.)
It has been a slow downward spiral that has allowed me to adjust along the way. My new status is Secondary-Progressive MS. I never had to miss one of my son’s lacrosse games. (He dumped baseball at age 10, right after I agreed to run baseball.) My husband and I continued to coach his basketball team through 12th grade. I made all his jazz band concerts and relished his time on stage as MC of the talent show. I was able to see my son’s college dorm but can’t get into the house he shares with six other guys. I consider that a blessing.
We’ve had to make changes to our house. Accommodations. I had to quit teaching due to bladder problem. Accommodations. Travel is difficult and there is no accommodation for that. That just pisses me off.
Anger is OK as long as you don’t let it consume you.
I have been making accommodations for MS since 1985. I have a terrific husband, great son and wonderful family and friends, all of whom go out of their way to ensure that I am still a part of their activities. See, when you have a disease like MS, you aren’t the only one who makes accommodations.
There is no cure for MS. There are multiple drugs capable of reducing attacks and, thus, slowing disability. But those are for Relapsing-Remitting courses of the disease. They are used with other forms, like my Secondary-Progressive and the more insidious Chronic-Progressive. The key is remyelinization. We need a drug that will repair the insulation on our nerves. Biogen, Inc. has a promising drug but it is only in Phase 2 clinical trials. We need Phase 3 and approval by the FDA.
Until then, we make accommodations.