If you saw a snapshot of my life fifteen years ago this month, you’d see a picture of a guy having a blast, heading a group of young people working daily to maintain our position as the most listened to radio station in the Southeast USA. You’d see a happily married guy with four good kids; mowing the lawn every week in my shorts with no shirt, taking out the trash and cheering on my second favorite football team, the Miami Dolphins. I was driving a Lexus and living in the same “hood” as H.W. Casey of KC and the Sunshine Band.
You’d see my furrowed brow, a result of concern as I was into the second month of testing to find out why the vision in my right eye was fading, why my toes were curling up in my shoes; why I was having random, debilitating muscle cramps, memory lapses; why I couldn’t walk straight, and wondering how all this was going to affect me professionally and personally.
More snapshots five years later, and you’d see my life after the diagnosis of Multiple Sclerosis that forced my retirement from the career I loved and flourished in for thirty-three years. You’d see a family uprooted from our very fine neighborhood, my wife’s relatives and our friends. You’d see we’d moved to my hometown because of concern this chronic disease was ravaging my brain and wasn’t slowing down and all I could think was to move back home, to be closer to my mom.
You’d see me progress from cane to crutches to a wheelchair; the daily injections of (hopefully) lifesaving meds; my vision still failing; vertigo making it hard to even sit at times, and countless falls with broken bones resulting in many trips to the ER. The furrowed brow changed to a constant look of bewilderment as memory became an issue.
You’d see my wife desperately searching for the best Multiple Sclerosis doctor in the state; doing everything to make my life comfortable; helping me get dressed, and picking me up when I fell. She afforded me the best canes, crutches and wheelchair, the best prosthesis, the best insurance coverage... all while managing three step kids and one of her own. You’d see us wondering if the meds were working and if something was going to stop Multiple Sclerosis from killing me.
Another snapshot five years later and you’d see the effects of a change in MS meds, you’d see me giving in to my Doctor’s belief that a simple vitamin, Vitamin D, would possibly enhance my body’s acceptance of the new life-saving drug. You see that all the bad that was progressing in my body, the brain lesions, the vertigo, the vision loss, the muscles seizing, and memory lapses, leveling off and not advancing. You’d see me in countless hours of traveling to, and participating in, physical therapy, working to regain some of the physical ability I’d lost. The bewildered look on my face would be changed to a look of hope that maybe the magic of modern medicine had gained control and the progression of Multiple Sclerosis had been interrupted.
Take that snapshot today and you’d still see me in P/T; still having muscle cramps; still with a vertigo problem; still not being able to see clearly; still with an occasional memory problem; and still full-time in a wheelchair. But what you won’t see is any progression of Multiple Sclerosis, at least for now.
And, you’d see my wifey continuing to make me comfortable. I have a power wheelchair and a wheelchair lift to get in and out of the house, and I have another stashed in the car for mobility when I’m away from home. I drive that car with hand controls (not making quick moves so as to not kick in vertigo) and my wife lets me go to the store alone; although she’s become friends with everyone at Whole Foods and they give her updates on how I fared on my shopping trips.
You’d see a guy grateful for a wife who has never stepped back; that the meds eventually worked; and that I didn’t give up. It’s hard at times because I’ve drilled it deep into my head that I don’t have MS, but I do, and for now, it’s not killing me.
And, I’m still having a blast with young people. In my wheelchair, I’m at eye level with kids and they have a natural wonder as to what I’m doing there. A young lady, probably seven or eight, was sitting in the kid's place of a shopping cart, actually looking down on me. As I whizzed past, she yelled, “HEY!” I whipped around with a big smile and said, “WHAT?” I spent the rest of the time shopping with my new friend Alyssa who wanted to know my name; why I was in the wheelchair; where my wife was; and why I had the shopping bag around my neck.
“My name is Kim, I’m in the chair because my brain stopped talking to my legs (I explain MS easy for kids..and adults); my wifey is waiting for me to come home with the groceries, and it’s hard to roll my wheelchair if I can’t use my arms, so I put the bag around my neck.”
“That’s very interesting, does it get heavy?” She was very vocal for a young lady who had some sort of developmental problem. We met going down every aisle and she had more questions each time we passed. We ended up next to each other at the checkout line and continued our conversation, “What are you cookin’ tonight?” she asked.
I told her, “Tonight, it’s Salmon with balsamic sauce.” “Yum, sounds good,” she said. I just laughed. “You’re a good kid Alyssa.” Her mother never said a word, just smiled.
The snapshots of my life changed over the last fifteen years, the furrowed brow eventually disappeared and was replaced by hope and happiness; I prefer living that way. I do regret not stopping to take a picture of my new friend Alyssa on that trip to Whole Foods, she now holds a special place in my snapshot life collection for making a regular shopping trip memorable.
Until next week,