An MS blessing?

Nothing is the same, but I still find reasons to smile.

By Jeffrey N. Gingold

No one wants to be diagnosed with multiple sclerosis. My wife, Terri, and I were expecting our second child in 1996 when I received the harsh news. I was 36 years old, and MS yanked the tablecloth out from under all our well-laid family plans, tumbling them to the ground. Some were irretrievably smashed. So, deal with it, I figured.

At a National Multiple Sclerosis Society seminar for newly diagnosed people with MS, one of the attendees mentioned that they felt blessed by MS.  The comment went right over my head as I was dealing with the loss of vision and equilibrium, left-side numbness from my toes to my scalp and profound undiagnosed cognitive challenges. Blessing? Really? No sense of any MS blessing here, I thought. Hardly.

Time for an informed second opinion. The complete neurological workup included a diagnosis of cognitive issues. Who knew? Certainly, my first neurologist didn’t. My sudden inability to instantly recall previously known names, faces and locations was a common MS symptom.

Connecting with a neurologist who understood the physical and cognitive impediments of MS was key to understanding my condition. However, I didn’t get to pick one over the other. Both sets of MS symptoms were affecting me. With the guidance of a neuropsychologist, managing the cognitive obstacle course of recall delays and lost focus was possible. Accepting my cognitive challenges opened the door to learning coping strategies.

MS is a chronic and cruel progressive disease, I quickly learned. Denial did not clear mental fog.  Neither did it offer me a hand with an exacerbation or injury from falling. Disability wasn’t an exercise. MS taught me to learn how to “un-run” by struggling to walk. Eventually, my running ended. For one season, the running shoes made excellent planters. In exchange, a cherry wood cane was in my hand and an ankle-foot orthosis (AFO) on my leg. You never realize at the time you do something that it will be the last time you can do it. Running became a memory.

While MS had flipped the table on my life, I also discovered how time could roll back, just for a few delightful moments. 

There are few things that bring an instant smile to my face like the memory of walking with our daughters Lauren and Meredith, especially when they were young. Whether safely guiding them across a street to a park or playground, it was all ideal bonding.  

On vacation or in our neighborhood, walking hand in hand with each of our girls was precious time well spent. The walking distance was frequently marked by counting wandering kitties and scampering bunnies.  

When keeping up the pace became more difficult for me, the cane helped me still be there. Time passed.  “Daddy” became “Dad,” and those young, innocent days receded into the past.

Today, Lauren and Meredith are young adults. They are both independent, accomplished, beautiful and compassionate. Terri and I proudly watch their life choices and direction. Now when there is an opportunity for me to walk with our daughters, neither of them misses a beat. Their reaction is instinctive and natural. If I try to stand, one of them will silently grab my hand any time or place. With one hand held by my daughter and the other holding a cane, we walk. Lauren and Meredith are in their 20s now, adults, but they still want to hold my hand. It’s hard not to smile.

Down the block, across the street, along a river walk or in an airport terminal. I never ask, but a hand is always there, firmly grasping mine. The hold steadies my gait and sometimes even gently tugs me forward. And here I am again, “Daddy” going for a walk, holding one of his daughters’ hands. It is a sweet moment to hold a young child’s hand, but it may not linger into their adolescence or adulthood. The reasons have changed, but they still reach for my hand, like when I was just “Daddy.”

And there it is. I may struggle with my MS, but I do feel fortunate, too. I get it now.

Nothing is the same with MS, I know, but I hope that we can all enjoy life and fight MS as a family.

Then maybe, when either of our girls thinks of me, they can ignore the MS and just say, “That’s my dad.” With a cane in one hand and one of my daughter’s hands in the other, we move forward. Slowly, but together — and that is a blessing.

On a recent walk, I saw my daughter pointing at a neighbor’s lawn.

“Look, Dad,” she said, “a bunny.”  

Despite MS, we kept walking, and I silently beamed. 

Jeffrey N. Gingold is the award-winning author of the books “Facing the Cognitive Challenges of Multiple Sclerosis” and “Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis.” He and his wife, Terri, live in Milwaukee, Wisconsin.