Back to Zero

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

There is no dramatic backstory that led to the fall. I didn’t trip. I didn’t bang my knee on my bed. I didn’t lose my balance and tumble into the wall (yes, that has happened before). Instead, I fell while standing. Yes, standing.

It all happened so fast. I was getting ready for bed and had just put my glasses on my nightstand. As I was about to climb into bed, I stopped to listen to a little bit of the Tonight Show in the other room. Jimmy Fallon was reading funny Tweets from viewers about their desired superhero powers. Some of them were hilarious. (Since this post needs some comic relief, you can find the clip here.)

And then, without warning, my left knee decided it no longer wanted to support my body weight and I collapsed onto the hardwood floor.

My falls are never graceful, but this fall was especially punishing. Picture dropping a stack of textbooks – that’s basically what my falls are like. Somehow in the process I managed to miss my bed, which would have softened the fall. Instead, I landed squarely on my tailbone. My lower back compressed and cracked, followed by a shooting pain.

For a brief second I thought I had broken something. The pain was excruciating. I was lucky I didn’t hit my head and get a concussion, but that was about the extent of my luck.

My parents rushed into the bedroom, my dad first with my mom right behind him. They found me attempting to roll over and lie on my side to defuse the pressure on my tailbone. “I’m alright, I’m alright,” I grumbled, as if trying to convince myself it was true.

I knew this sight would be tough on my parents. Just imagine someone you love falling, possibly injured, unable to get up under their own power. I used to downplay the severity of my falls in their presence, until I thought of them falling and how I would react.

It was a sobering thought, but there were more pressing problems at the moment, namely, how I was going to get up.

It took a lot of strategizing and trial and error, but my dad was able to successfully get me into a standing position. As he lifted me, however, it hit me that I really needed to find backup help. My dad, although strong, is not getting younger.

I sat down on my bed and immediately felt a shooting pain in my tailbone. Even if it’s not broken, this is bad, I thought. I popped some ibuprofen, which did just about nothing.

It took me five minutes to get into my usual sleeping position. Every movement produced a sharp pain in my tailbone and lower back. How was I going to stand tomorrow? I knew that I would be in rough shape in the morning.

As I writhed in the darkness, I thought of the future. My good fortune had come to an abrupt end. The next few days, I projected, would be spent in immense pain.

Changes would have to be in order. I was thankful to have my wheelchair, but I would likely need to start walking with a walker of some sort, in the parts of the house (such as the bathroom) where my wheelchair couldn’t go.

I’d also need to find backup help. It has been on my to do list forever – to find additional caregiving help – but it’s funny how easy it is to procrastinate when things are going well.

I shouldn’t have put myself in this position. 

My inner voice was unsparing.

You are a burden.

I knew that wasn’t true, but I still couldn’t shake the thought from my mind.

I didn’t get much sleep that night.

Falling is traumatic. Physically, it is a sudden jolt to the system, unwelcome, almost always painful. But emotionally, it is so much worse. Not only does it reset the falling clock back to zero, it also takes away my hard-fought sense of security. After every fall there is a vulnerable phase where all I can think about is how unsteady and weak my body has become. It puts me in a funk for days. But slowly, surely, I regain my confidence, and after a few months, I return to normal, or as normal as things can get. The memory of the fall fades ever so gently out of mind.

Six months of security, gone in an instant.

The last five days have been brutal. I’m still in considerable pain, which has not subsided as I had hoped. My lower back and tailbone are so stiff and painful that I need to brace myself on my dad’s shoulders in order to walk around. It hurts like hell. And there are still many days of pain ahead. Lots of propped up pillows, Icy Hot and pain pills are in my future.

My body is a shell of its former self. In its place, my mind and soul are going to have to be my strength, as I slowly, painfully, rebuild my sense of security.

“My grace is sufficient for you, for my power is made perfect in weakness.” – 2 Corinthians 12:9

14 thoughts on “Back to Zero

  1. Brutal! Physically. Emotionally. Strategically. It’s all just messy and overwhelming. The excruciating pain does not help. I wish you luck as you navigate your way through what safety and security will look like now. And remember you are not a burden, you are a human.

  2. My heart goes out to you, my friend! And, believe it or not, I fractured my pelvis and the following Friday afternoon. I will be in rehab for 2 to 3 weekss my heart goes out to you, my friend! And, believe it or not, I fractured my pelvis on Friday afternoon. I will be in rehab for 2 to 3 weeks, or until I can get up without screaming in pain. This will be a difficult chapter for the both of us, but we can do it! I will be thinking of you, sending you healing and courage!

  3. Souvik from India

    Hi Chris
    I am also a patient of muscular dystrophy (lgmd type 2B).I am facing exactly similar situation that you have been facing from the disease was diagnosed.My disease was diagnosed when I was 12 th standard.Now I am 31 years old.I completed my study(post graduate) and doing a teaching job.Sometimes I feel myself as burden to my family members through their contributions in my life is immeasurable.

  4. I thoroughly understand and can relate to your feelings Chris. I really hope the pain recedes quickly and you can begin to re focus on all that is wonderful happening now and in your future that you have created with your strength and determination. Big virtual hugs to you 🙂

  5. Jill

    Hi Chris! I also have 2B and have for about 20 years. I think going to regular therapy has been really helpful for me. And developing a lot of interests outside of MD. Obviously I know that it isn’t always fun and I fall twice a month or so, but there is so much more to all of us than the physical. Roosevelt beat the Nazis without legs so…

    Also, I just spent three weeks helping my friend who was badly burned in an accident and I didn’t see her as a burden at all. When people love each other, it just isn’t something that occurs to you. All of us just show up and do our best. We actually thought it was so funny that I was the more mobile one hobbling around. Even if people have to help you physically, there is still a lot you contribute in other ways.

  6. Pingback: Between Then and Now – Sidewalks and Stairwells

  7. Emi

    I’m in the process of waiting for my DNA test to confirm LGMD. I feel so related to your post. I also keep count of the days I haven’t suffered a fall. When I’m about to fall, I kind of panic; even watching other people fall makes me panic. I have got many scars on my knees due to my fillings. Thank God I haven’t gotten any injury.
    I’ll keep reading your blog and comment as possible. God bless you.

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