I took my final steps on May 11th, when I fell in my bathroom at home and had to be helped up by paramedics. To continue trying to walk was just too risky. Two months have passed since that day, and I have had a lot of time to think about what losing the ability to walk means for my life going forward.
I see my legs every day. I can still move my toes, bend my knees, and flex the flabby remnants of my calf muscles. I can still feel the pain of tense muscles, the ache of sore hips. I still get random itches on my feet that never seem to go away. My legs are still very much a part of my life, and I am thankful I still have them.
But in the task they were designed for, to get me from point A to point B, they don’t work. They are accessories, not workhorses.
Yet, for all the grief my legs have provided me these last few years, I am not bitter. I don’t blame them for my predicament. They didn’t give up on me, they just didn’t have the genetic material needed to keep working.
Maybe in the future I will walk with robotic legs or will benefit from some gene therapy that will regrow my muscles. If you had told scientists 100 years ago that in 2022 we’d have computers, the internet, driverless cars, and would walk on the moon, they would say that’s impossible. So who’s to say that from our vantage point today, cures or elaborate exoskeletons are not right around the corner?
But the future, by definition, isn’t now. Even if a breakthrough someday comes to fruition, I may not be around to see it. All I have is today. (Which is fine, I like today.) All I have are my current circumstances. Which means, learning how to live with the fear of a life without walking.
For fourteen years I have dreaded what it means to lose the ability to walk, with all its physical and emotional implications. Even when I started using my wheelchair full-time four years ago, I could still take steps, with assistance, and shuffle around. Even two months ago I could do that. But not anymore. Now that I’m not mobile, now that I’ve crossed the Rubicon, there is no going back. And admittedly, it’s a bit scary to think things are only going to get more difficult from here on out (unless of course, a breakthrough happens).
Up until a couple weeks ago, I couldn’t put my finger on why I was afraid. But I knew that, like in times past when unsettling milestones occurred on my disease journey, I would have to confront it one way or another. Better to pull off the band-aid now.
So I took some time last week to really get to the root of my fears, which meant asking “why?” over and over to tease out my underlying feelings. It is a helpful technique, one that I’ve found useful when I’ve faced uncertainty in the past. (It is also a great way to drive yourself mad after an hour.)
I knew that I would eventually write about this exercise, so I took notes. Hopefully this is helpful to anyone in a similar situation. I have condensed some of my notes for clarity and coherence. First, I wrote out my fears in as much detail as possible. Then, I resolved how to address them.
Part 1: Why I am afraid
What exactly am I afraid of?
Not walking anymore.
Why am I afraid of not walking?
Several reasons. First and foremost is health. I am afraid that living a sedentary lifestyle will leave me prone to sickness and poor health as I no longer experience the benefits of exercise and activity. I am afraid of a stroke, diabetes, blood clots, and heart disease down the line.
Pain – I worry that my muscles will tighten up, and I’ll be in constant muscle and joint pain at all hours. I am afraid that I might somehow fall out of my chair or during a transfer and break a bone or tear a ligament. I don’t want to be reliant on pain medication on a daily basis.
Weakness – I am afraid that the less I move around, the less my muscles will get used, which will only weaken me further. What if I can’t move my limbs at all in a few years?
How about emotional issues?
Stigma/Self-Image – It’s not so much that I’m afraid what people will think, just that, now that I am not walking, I can’t say “Oh yeah well you know, I use my chair most of the time but can still take steps when needed.” That always helped give me a bit of a psychological escape hatch to say I am a part-time walker. Now I can’t do that.
I suppose it’s more of a self-stigma. I really don’t care what people think of me using a wheelchair. 99% of people don’t care anyways. But I am afraid that I’ll struggle to accept that I am a non-walker now. It can’t be undone.
Emergencies – If something happens and I need to leave my home or another place quickly, or disaster strikes and I can’t evacuate for whatever reason, or my chair dies unexpectedly, I am a sitting duck. I am vulnerable to my surroundings. That is not a great feeling.
You haven’t addressed the elephant in the room.
Sigh. Isolation – As I grow up and my friends advance in their lives, there is less time to see them. Between COVID and living out of state, I have felt the separation acutely these past three years. There is only so much connection that can be fostered by Zoom calls or texts. I really miss my friends. I am afraid that we ultimately drift apart, or, worse, that I’ll be forgotten.
Well this is a fun subject, isn’t it?
Thankfully, it is only half the story. The point of the exercise was not to sulk. It was naming what I was afraid of so I could then address it.
Part 2: Ok, now what?
Is there a way to minimize these fears?
Health – Alright, well, I can’t exercise, so that is out the window. But I can control what I put into my body and the amount of sleep I get on a daily basis. I don’t drink alcohol or soda anymore, that is good. I have been on WeightWatchers since the start of the year and that seems to have helped with keeping myself at a manageable weight. I need to stay at this weight or even lose a few more pounds. If I stay limber and move my limbs throughout the day, that’ll help to minimize the inactivity. But at the end of the day, the health risks are elevated. Yes, it’s ok to admit it sucks.
Pain – The main pain issues are sore joints and muscles/nerves. I can stay limber, and purchase a stander so I can stretch my lower half and retain body mass. I can control the ergonomic setup of my desk when I work and type on the computer. Buying an adjustible bedframe was a huge help in cutting down on neck pain. If pain continues, there are pain management options available, but those should be a last result and used sparingly. I won’t be able to eliminate my risk of falling 100%, but I can minimize it with the right equipment and common sense.
Weakness – There’s not much I can do here, unfortunately. Just don’t overexert myself so I weaken faster. Always ask for help! Don’t be a hero and try to lift a heavy object or wiggle around until I am in the right position, exerting myself in the process.
Stigma/Self-image – In terms of worth, I have to remember that my worth is derived from who I am, not which limbs are available to use or how much strength I have. I must keep this front and center. I can’t expect others to accept me if I don’t first accept myself. The self-image part is a work in progress.
And as for others, I am going to always come across people who stare, people who don’t know how to deal with someone in a wheelchair, or who may be outright ignorant. I have had success by giving people the benefit of the doubt first before reacting negatively. Continue to do that. There will always be exceptions but they are not the majority.
Isolation – Stay in contact with the friends who matter. This time has been clarifying in identifying who those friends are that are worth it no matter what. If I can get back to Boston sometime soon, even to visit, that will help to alleviate a lot of this anxiety. Stay in contact with texting. From time to time, pick up the phone and actually call someone (*audible gasps*).
After thinking through solutions, I feel a little bit better. This is where purpose really comes in. Faith helps to put this all in perspective and know that the suffering is not wasted. I also know that I am capable of great things, if I just keep my eye on the prize. Acceptance is a process. A messy, infuriating process, but one that takes time.
8 thoughts on “Now What?”
Thanks so much for posting this, Chris. It’s helpful on many levels. You’ve accumulated more wisdom in your few decades of life than the vast majority of my other friends and acquaintances.
Every time I read your posts I am more impressed. Thank you for sharing. This exercise can help all people going through life.
Be in peace, Nina Landau
Although coming to the realization that you can’t walk and do normal things anymore is extremely hard, it is not the end of the world as you learn how to adapt and you can still achieve much from your life. Good luck for the future I know what you are going through. Stay strong!
Chris, I have been living with Muscular Dystrophy for 65 years. I am inspired every time I read your posts. You are stronger than you know. Just remember it’s ok to have a “whoa is me day” once in a while, Then immediately get back on track. Keep up the good work you do here, you help countless people that are just starting their journey 😊.