A couple weeks ago, I experienced a milestone in my disease progression that I knew was coming, but I still wasn’t quite prepared for: I stopped walking.
Technically speaking, I stopped taking steps forward. I can still shuffle around while holding onto my dad, but for all intents and purposes, I have taken my final steps.
It didn’t happen after a fall. For that I am grateful. The decision came on my own terms, meant to prevent injury more than anything. But that didn’t make it any easier.
So how did this come about? I was walking to the bathroom one morning, after getting out of bed, leaning on my dad for support as I usually do. I got to the bathroom and started to turn towards the toilet, when I realized that my legs just didn’t have it in them to keep moving. They locked up. Stubborn as I am, I tried to push through, but my dad was forced to sit me down before I was quite ready and in place. It was a turbulent landing, but a safe one.
Afterwards, dad put me into a manual wheelchair and wheeled me to my power chair. All the while, all I could think about was what happened. I knew that an important milestone had taken place. My legs were too weak.
I had a decision to make. Do I keep taking this risk, or accept that I’ve walked for the last time? It actually wasn’t a difficult choice. I don’t want to get injured, and this was the best way to prevent a fall from happening. So I decided this was it.
To make the decision on my own terms afforded me a sense of control in the matter. That made it a little more palatable. Walking was getting too dangerous, and to try and push it was reckless for both myself and my dad, who would have to pick me up off the ground if something went wrong.
I knew this day was coming. I have gotten significantly weaker over the past year while I’ve been stuck at home during the pandemic. It is mainly due to the natural progression of the disease, but it is also due, I have to think, to an insane amount of stress. This was the most stressful year of my life for many reasons, and I know that stress has a negative effect on muscle strength.
Of course, everyone is always like “you have to lower your stress level!” as if there was a simple on-off switch. It is not a conscious decision, such as choosing a salad over a slice of pizza. Even with meditation and all the coping mechanisms that I know so well, it’s not that easy. When your family is sick and in the hospital, when people are dying every day, when the world seems to be crumbling all around you, life is stressful. No relaxation technique will completely help.
That night, while lying in bed, replaying what had happened earlier in the day, I thought about my childhood. A simpler, more innocent time. I thought back to when I was in fourth grade, how I won my school’s field day hurdles competition. I received the blue first place ribbon, then got the chance to compete in the West Hartford townwide competition later that year, where I placed third.
Running! Jumping! Running AND jumping! It seems like a lifetime ago.
I’m glad I had the chance to know what it was like to run like the wind. I’m glad I was able to experience going for multi-mile walks in Boston, Washington D.C. and New York. I’m glad I was able to climb all 294 steps of the Bunker Hill Monument in Boston with minimal effort.
Those are memories I will cherish. Because now, all I have are memories.
Let me pause for a moment.
I know what it probably sounds like reading all this. Some of you, especially my friends, family, and long-time readers of this site, might be feeling sad for me. You don’t have to be! I mean, it is sad to some extent. But I also knew this was coming. It’s not ideal, but deep down, I am hopeful I have not walked for the last time. That’s not to say I am boundlessly optimistic, but I am reasonably so.
I stay up-to-date on the scientific research. Although scientists have yet to figure out how to regenerate muscle, I’m hopeful one day they will. That is the long-term fix. In the immediate term, I hope that some form of mechanical exoskeleton will be developed that could do the walking for me. Wouldn’t it be nice to put on a suit each day, get up out of bed, and walk around? I’d take that in a heartbeat, even if I look like Iron Man.
Ever since I started using a wheelchair, I have realized that if I have the right support around me, I can get through this. Life is not automatically diminished just because I use a wheelchair.
This has been one of my greatest learnings over the last decade. I still remember the day, ten years ago, sitting outside Beth Israel Hospital in Boston, trying to absorb the news from my neurologist that I was going to end up in a wheelchair within a decade. There were no treatments on the horizon, he added, nothing that could stop the progression.
I thought about what it would be like to use a wheelchair. I didn’t think I could do it. It just seemed too difficult. Besides, how could this be possible? I grew up always being one of the fastest kids in school. I decided to deny that it was happening, which only made it worse.
Acceptance, I would learn, takes time. I got there eventually, in fits and starts. Ten years after that fateful day at Beth Israel, I bought my first power wheelchair, right on the schedule my doctor predicted. And now, I use it full-time.
Will I accept this disease 100%? Probably not. It still seems surreal that the muscles that once led me to win races and play basketball would stop working altogether. But they have.
Although I have made peace with it, some mourning is still involved. It’s natural. If this moment didn’t impact me, it would be worth questioning if I was human. Losing the ability to walk does suck. It’s a big life change, to say the least.
I will end with this. At the beginning of the COVID pandemic last March, when the world was shutting down and doom and gloom overtook our lives, the likes of which we were not prepared for, I was consumed with worry. All the talk at that time was about overwhelmed hospitals, ventilator shortages, and people dying by the thousands. All I could think about was whether or not my family would get the virus. If my parents got sick, would they have to fight this alone in a hospital, unable to be visited by loved ones? Would they too have to go on a ventilator, or worse, would it kill them?
On a more selfish level, I also thought, who would be able to care for me? The rehab facility down the street wasn’t accepting new patients, as they were dealing with their own deadly outbreak. Even if I found someone to come in and care for me, I’d be in a constant state of worry. What if they got me sick, and I ended up in the hospital? I was young but my body was very weak. Would I survive?
As you can see, my mind went to a lot of bad places.
While dwelling on the virus day and night, I thought about what I would be willing to sacrifice to prevent this worse-case scenario from happening.
Would I be willing to lose all my money? Yes.
Would I be willing to lose my job? Yes.
Would I be willing to stop walking? Yes.
I meant it. I would be willing to trade my remaining mobility for the health of my family. Absolutely.
So, in some respect, I feel like this a natural course of events. My parents did get COVID in December, but bounced back. They are fully vaccinated now. Almost all of my immediate family members got the virus, aunts and uncles and cousins. Although quite sick, they recovered as well. I got my first vaccine dose the other day. Given all that my family has gone through (including unrelated hospital stays last year for other reasons), I am ok with this trade-off. I’m ok to not be walking.
Because at the end of the day, it doesn’t matter how many steps you can take if you don’t have the ones you love by your side. No amount of walking could bring them back.
So yes, I’m bummed. But I’ll be ok.