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.

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A Pain in the Nose

For as long as I can remember, headaches have been a part of my life. I don’t know how old I was when I got my first headache, but I distinctly remember crushing, nausea-inducing sinus pain in middle school. My pediatrician at the time referred me to a headache specialist – a serious, middle-aged man with silver hair and thick glasses – who asked me in my first appointment to describe the pain. I pointed to the base of my nose, my forehead and the back of my neck. “Pretty much everywhere,” I said.

The doctor recommended an MRI to see if he could find the source of my headaches, and also to see why I couldn’t smell. Perhaps, he said, they were related. I had never heard of an MRI before but it was an excuse to miss school, so I was cool with it.

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Troubled Waters

I don’t usually write after a disease-related traumatic event but today is different. I’m writing now because I need to distract myself, and quite honestly I don’t know what else to do.

I stumbled this morning when I looked out my window at construction taking place on my building’s exterior. It was early, I was exhausted, and I wanted to see if I should turn on my air conditioner to drown out the noise. As I was walking back to bed I bumped into a table, stumbled, and twisted my left foot.

I felt a shooting pain like I’ve never felt before. I don’t take proper steps, since my legs and calf muscles are so weak that my legs bow out. One little bump from a table and it is enough to cause my foot to roll over. The pain is concentrated below my pinky toe, on the foot itself. It feels like it is on a joint of some sort, or underneath, or on top, who knows. This is a new pain for me, and to try and isolate exactly where it hurts would only lead to more discomfort.

I can deal with the pain, but what scares me is what the underlying pain will mean to my future. Tomorrow morning I go for x-rays. Is it a sprain? A small fracture? I have no idea. My foot, six hours later, still hurts a lot, although the pain has been dulled by my trusty frozen bag of butternut squash.


I hope and pray that it is just a sprain, and not a break. I cannot afford to be off my feet for any length of time, or even in a walking boot for that matter. I don’t have the strength or stability to walk in a boot. If I am stuck in a seated position, I will get weaker even faster, which is especially concerning since I have gotten noticeably weaker in just the last few months. To speed up the weakening process means that my walking days are numbered.

As I sit propped up in bed, surrounded by phones, remotes and pillows, I am thinking about what comes next. I try not to dwell on the future, partly because it is a scary place but also because there is so much unknown. As my friend Rhamy cheerfully likes to say when I worry about what lies ahead, “Hey, you could always get hit by a bus.” With that uplifting piece of advice in mind, I try to live in the present as much as possible. I accept my situation, but this is still a scary world I live in and that I will never get used to.

I’ve learned that it’s okay to be afraid – perfectly normal – but now, more than ever, I must put on the face of resilience. Every time I share my story with audiences I talk about what has helped me overcome adversity when times get tough, and I must take my own advice to heart right now. I don’t know if that gives me more credibility or less to talk on the subject, but that isn’t my concern at the moment. All I care about right now is trying to stay afloat on an angry sea of adversity, fearful that the anchor I threw over the edge of the boat won’t find the bottom in time.

I don’t know what tomorrow will reveal. I am hopeful that it is just a sprain. But if it is more than that – a fracture, no matter how small – this could be the beginning of the end of my time walking. It is a future that will come at some point, but I hope that time isn’t now.

My foot is starting to get wet. My butternut squash is beginning to leak so it looks like it is time to wrap up this post. I’ll keep you all updated. Thoughts, prayers, whatever you like to give to others, are welcome right now. I’ll take whatever help I can get.

Unlike my leaky bag of squash, I’m not ready to give up. Hopefully my body feels the same way.

The Breaks of the Game

Over the last couple months I have experienced a series of muscle pulls that have tested my threshold for pain. The resulting discomfort affected my mood, and often forced me to stop what I was doing and lie down with a heating pad. If I happened to be in class, I resorted to pain medication, which sometimes worked and sometimes didn’t. Every time this type of pain occurs, on top of my day-to-day aches, it frustrates me to no end. My productivity evaporates into thin air as my concentration shifts from the task at hand to dwelling on the discomfort. Quite simply, my tolerance for pain is not where it needs to be given its prevalence in my life.

Pain, discomfort, soreness, aching – if you have a neuromuscular disease, you experience it all. Last March I attended the Muscular Dystrophy Association’s Clinical Conference in Chicago, and one of the speakers presented on the topic of pain and how it is often a forgotten symptom for someone with a muscle disease. Thinking of my own experience visiting doctors, it sometimes got pushed to the back burner, behind assessing my loss of strength and writing prescriptions for mobility aids. Of all the talks at the conference, it stuck with me the most, and I wrote about it in a blog post during my time there.

Pain is a tough subject for me to share my personal experience, for I always feel like I am complaining when I know full well that others have it worse. I don’t have to go far in my own life to know that.

But the pain I do experience I have to deal with better, because it exists in some form all throughout the day. From the moment I wake up in the morning, I am greeted by the unwelcome presence of stiffness and soreness. After spending hours lying down, I wake up and my body is newly stiff and sore. After rising, I limber up and shower and it temporarily subsides, but it often comes back in greater magnitude later in the day. Occasionally the pain doesn’t diminish to a level where I can tough it out and I take ibuprofen which provides temporary relief. Sometimes though, especially if the discomfort originates in my neck or shoulder, it causes a tension headache that radiates to the top of my head and sinuses, which causes my head to pound mercilessly. If I don’t catch the pain in time I am left with a thankless dilemma: take ibuprofen to ease the shoulder and neck pain, or take Excedrin to eliminate the headache. I go for the headache each time, as that ends up being the most debilitating pain.

It is what it is. I say that casually because, to be honest, it has been a part of my life for so long that I can’t remember what life was like before my tendons stretched and my joints scraped against one another. I can’t remember the last time I had perfect posture or was fully limber.

For patients with more progressive disabilities that use a wheelchair, the pain can be much worse. Imagine being in a chair all day, every day. Your muscles begin to tighten, cramps and strains develop, and you can’t go anywhere. You can’t adjust your body well enough to take the pressure off of where it hurts.

This could very well be my future, or it could not. As I mentioned before, I don’t handle my current level of pain very well to begin with. Just a little bit of pain can make me miserable, and render me unable to focus on classwork or whatever task is at hand. There are days when I’ve woken up and have felt perfectly calm, perfectly devoid of feeling. This moment of bliss, even though I don’t take it for granted, is usually shattered moments later by something as mundane as drying my hair with a towel, or getting up out of a chair. I perform the activity, then turn my head and bam, a shooting pain in my neck. I move my neck around and it’s still there. It remains with me the rest of the day, tugging at my concentration, testing my endurance and tolerance. And I crumble. It throws a wrench in my day, and I either get an excruciating migraine from the tension or am unable to do much of anything besides lie down and wait for pain meds and a heating pad to work their (temporary) magic.

Worse, part of the pain is exacerbated by fear and anxiety – the pervasive gnawing at my soul that my pain and discomfort may very well get worse before it gets better. Then there is the worry of what could happen if, the next time I fall, I hear a snap, followed by unimaginable agony. It has happened to other patients with my disease. I’ve read the horror stories of someone reaching for something on a shelf, losing their balance, and breaking a leg. Or the person who tripped on an uneven sidewalk and fractured a hip. Then there was the woman on the MDA Facebook page who, I presume in a moment of extreme frustration, posted a picture of her x-ray showing a compound leg fracture for the world to see, followed by her swollen, discolored leg after surgery.

I think about what that pain would feel like, hoping and praying that I never encounter it. I shudder to think about it – I know I shouldn’t – but I have to live with this possibility. Not only would a break like that be the end of walking as I know it, it would cause me pain that I’ve never experienced before. If I struggle with the pain and discomfort I feel now, how am I supposed to cope with a break?

These thoughts sometimes overwhelm me, but I have to remember to take it one day at a time. I have to focus on the now, and make sure that every step I take in the present is the safest one possible. That’s all that I can do. It would be reckless for me to deny the possibility of breaking a bone in the future, but at the same time it’s unhealthy to let this fear consume me. In a quest for inspiration in the face of adversity, I’ve been turning to other examples of people who have had to endure far worse anguish than my own.

It’s funny how life often directs you exactly where you need to go.

A few weeks ago I was watching television (which I rarely do anymore), and came across the trailer for Unbroken. I hadn’t heard of the movie, or the book it is based off of up until then. Since I am on break, I decided to purchase the book, and I’m glad I did.

Sometimes it is refreshing to read about people who overcome adversity, including pain, no matter how severe. The book, by Laura Hillenbrand, is about Olympic runner and WWII POW Louie Zamperini. His life, and all that he had to endure, is nothing short of remarkable. Although I haven’t had a chance to finish the book yet (I will in the next couple of days), the anguish he encountered surviving on a raft in the middle of the ocean for 47 days, followed by the pain from constant beatings as a prisoner of war, is unfathomable. Broken bones, concussions, illness, starvation, thirst; he experienced it all.

Yet he overcame. He endured. His human spirit could not be broken, hence the title of the book. I am amazed by each page that I read – to think he lived to be 97 after all that he went through is mind-boggling. I am running out of words to describe “it can’t be believed”, because it just…can’t.

I don’t think I’ve ever been punched before (and would like to keep it that way), but I have whacked my head on a cabinet door, or recoiled and hit my head on a wall, and it hurts. To get consistently beaten, day after day, requires an extreme tolerance of pain, and enormous mental strength.

But it shows what can happen when you master pain. You defeat it. Pain doesn’t go away by wishing it away. You might take drugs or medicine and it goes away temporarily, but it always comes back.

I have to get better at dealing with the discomfort, because my pain wont go away quietly. I need a better attitude. There are definitely other ways to attack the problem. I have heard the benefits of altering one’s diet to reduce inflammation, and am trying to incorporate this diet into my day-to-day life by eating smarter and more strategically. Perhaps that will offer some relief. Sure, there are some alternate forms of pain relief out there, but at the end of the day, the pain will always come back as it is a chronic condition. Overall, I need to improve my mindset.

As humans, we are capable of mastering pain. I must put my mind to defeating it by not letting it destroy my spirit. I need to break the grip of pain from my life before it breaks me.