I’M WALKING

Preface: The author of this article is the epitome of courage in the face of adversity. Mark is also a wonderful inspirational speaker and, we are proud to say, a member of the HALO Board of Advisors.

This article is adapted from entries in Mark’s blog, HumanLifeMatters. As you read this remarkable story, reflect on this statement from Mary Merritt’s column: “The right to die movement’s promotion of death on demand is counter-intuitive to all suicide prevention programs. … It encourages people, at their lowest point, to end their lives, instead of encouraging them to fight on.”
–Julie Grimstad, President of HALO.

I have had multiple sclerosis (MS) for thirty-five years. It’s a horrible disease. Multiple sclerosis has dragged me through many frightening disabilities (each one terrifying). It hasn’t been just me who has lived through terrifying symptoms of a serious neurological disease, my family was dragged along too. My wife once said, “It is harder to watch than to be” — and perhaps she is correct. To watch a loved-one suffer can be worse than being the one suffering. To think of things being turned around is too difficult for me to contemplate. My mind simply refuses to think of my wife bound to a wheelchair, sinking more with each attack of MS. We have lived through a long, painful journey spanning decades!

Things got so serious at one point, I was threatened with the prospect of quadriplegia. I needed help getting dressed and tying my shoes. Someone else had to cut my meat at mealtime. I went into a full electric wheelchair equipped with side-braces to keep me from sagging sideways. My legs were tied to the leg rests to keep my feet from falling off the footrests. I couldn’t hold a pencil to write my own name. My bedroom was outfitted with a hoist to get me out of bed. Plans were being made to put a hoist in my bathroom to lift me into the bathtub. We drove a wheelchair accessible van. We built a barrier-free house to accommodate my disability.

I am now at what is considered end-stage MS. The expected course is steady deterioration, a nursing home, or round-the-clock home care. That’s how bad things get, or at least that’s how things are expected to go.

A few years ago, I began to notice subtle changes. At first, they were so small (almost indiscernible) I did not mention them. Sometimes I thought wishful thinking might have merely created a perception of change. Then one night I woke from a deep sleep. God was there and He made me aware. But aware of what? I was told (not in words) to try to make my thumb touch my little finger. It had been years since I had the use of my right hand.

I did it! I could make my thumb touch my pinky finger! It stunned me. It was not fleeting like so many neurological improvements. It stayed. Eventually, I could hold a spoon, a pencil, a cup, and use my right index finger to type on my computer keyboard. (For years, I typed with just my left hand’s thumb, index and third finger.) It was as though my plaque-ridden brain was beginning to find new signal pathways. I could write again with my right hand! (I hadn’t been able to do that for twenty years!) I showed this to my wife, but she was cautious; she had become excited so many times throughout the years, only to have her hopes dashed as new MS attacks stripped more physical function from me and the slightest improvement was lost.

I awoke from sleep one morning able to struggle to sit up without using the hoist above my bed. I continued to refuse using the hoist. I used this window of opportunity for exercise to strengthen my trunk muscles. Eventually, we took the hoist down from above my bed.

My mother-in-law died at the end of 2013 at the age of 82, after a long time in a nursing home. My wife brought her walker home after the funeral. One morning, in the winter of 2014, I was sitting in my electric wheelchair at the kitchen table having morning coffee. The walker was folded in a corner of the kitchen. He spoke to me again: “Get out of your wheelchair and walk with the walker.” What? I hadn’t walked in years! But the message was emphatic and clear. Shaky and tentative, I stood and slowly, fearfully took my first steps in over a decade. My legs were atrophied and weak, but I took about five unsteady steps, … then ten … then I walked slowly with the walker down a hallway. It exhausted me, but I did it! My wife and I were ecstatic! After I rested, she taped me doing it. Sadly, the improvement was short-lived and I lost the ability to walk again—but it returned in 2016. I could walk short distances with a walker or two canes.

This time the ability seemed to hold and I showed my doctor. She was incredulous. As I walked for her, I remember her exclaiming “No! It’s not possible!” And she was right. People with late-stage MS don’t improve, they sink. It was so incredible that another doctor came out of his office with his jaw on his chest to see for himself.

I was sent to my neurologist for an explanation. He didn’t have one.

By late 2018, I was using a walker for extended periods around the house—only using my wheelchair at the end of the day when I was tired or lazy. As we begin 2019, I am hopeful — perhaps too hopeful. My New Year’s resolution is to get in as good a shape as possible, continue to strengthen my legs, trunk and back with a goal to walk with one cane by the end of the year. Will it happen? I don’t know. Multiple sclerosis is a cruel teasing disease. It often returns function and raises hopes only to take it away.

I have to accept whatever happens and rest in the providence of God, trusting there is a reason for this unexpected but thrilling development. If I can walk, I will use it as part of my Christian witness.

If I lose the ability to walk and return to my wheelchair, I will use the experience as part of my Christian witness. Either way, I will praise God. He has been with me, and sustained me, throughout this long 35-year journey.

But today, I think I’ll saunter down the hallway again.

See http://www.humanlifematters.org/2019/01/im-walking

The video posted on my blog at http://www.humanlifematters.org/2019/01/update-walking-after-years-in-electric was taken on January 20, 2019. I’ve graduated from the walker to canes. Although I’m crooked because decades of severe back spasms twisted my spine, I am walking better and better. This is not supposed to happen with end-stage aggressive MS.