My Fears About Muscular Dystrophy
Words and image by Joanne Becker
It is not uncommon to fear the unknown - from the somewhat mundane ‘I wonder if I’ll catch Janice’s cold?' unknowns, to the more existential ‘how will my life turn out?’ unknowns. We could (and sometimes do) drive ourselves crazy by obsessing over every ‘what if?’, but many of us learn to shut down such fears and live in the present.
In recent years, I have wondered which is more palatable: fear of the unknown, or fear of the known.
Fear of the known stems from having a definite knowledge of situations that lie in your future; things that are completely unavoidable, and that may also limit possibilities. They’re often circumstantial, and not something that you would have chosen for yourself. You may dread their unfolding. And yet… despite the fear this can evoke, can an individual benefit from some knowledge of what’s to come, by proactively preparing and prioritizing?
I have experienced both types of fear, and feel quite certain that I prefer to fear the unknown. Ultimately, the unknown may or may not come to pass, and so equal to every unknown is glorious possibility and hope. I have found this to be true when confronted by a loved one being diagnosed with cancer, when a long-term relationship unexpectedly ended, and when embarking upon solo travels. For every unknown scary thing that might come to pass, there is a counterbalancing hope that it might not, and the possibility that something wonderful might happen instead.
Starting a business is another good example of this: you don’t know if it will fail, but you hope it will succeed. You don’t know if you’ll be able to earn enough money, but you might. You don’t know if people will buy into your idea, but you hope they will. You don’t know if you’ll enjoy the work involved, but it could become a long-lasting career. In many scenarios, you can also attempt to manage the unknowns to an extent: from treating (most) illnesses, to starting a new business slowly, alongside other paid work to mitigate risks.
In recent years, I have also been confronted by fear of the known. I was diagnosed with GNE Myopathy, a rare form of Muscular Dystrophy, in my late twenties. This muscle-wasting disease is untreatable and progressive; it will leave me in a wheelchair with limited use of my arms, and is likely to shorten my life.
It is very strange to know these things, but be unable to control them. It is surreal to feel your body weakening day by day, but not be able to do anything to slow or stop the progression. It is almost unbearable to be able to picture what is to come, knowing that it will be painful, frustrating, lonely, and limiting. Definitively knowing and fearing things in your future can result in an overwhelming feeling of hopelessness.
For me, this led to a crisis point in September 2017. I was 30 years old and still learning about the full extent of my diagnosis. I was already going through a difficult time, as I was feeling very unhappy in the business I had set up with a friend a few years prior (a fear of of the unknown about whether running a business would impact a friendship that sadly came to pass).
At this point, I learned from another patient that my condition was severe enough that I would probably be bedridden and in need of significant care by the time I was 50. I spent an entire day in bed, crying. Eventually, I thought about what would sustain me when I reached that point of my life. What would I want to see when I looked back upon my early thirties? It wasn't the life I was living. I wanted to see a strong, independent woman who had made the most of opportunities, who courageously did what she needed to do to be happy, and who made amazing memories.
So I decided to take charge; I had to accept what I knew, and try to work with it. I couldn’t change the future, but I could change the way I was living now, making every day count while I was physically at my strongest and forming memories that would keep me company later in life.
Five months later I found myself alone in India, terrified but excited to be seeing more of the world, and having walked away from my own business. I was pursuing the things I longed for, including travel, and I was trusting in my ability to figure things out as I went.
I lost count of the number of people who stared as I slowly limped along with my walking stick, asking me incredulously what I was doing travelling solo with a disability. I found myself explaining that it turned out I was a bit stubborn, and I wasn’t going to let illness stop me from trying to do the things I had always wanted to. If anything, fear of the known was spurring me on.
Knowing some of what my future holds terrified me for a long time, but by taking full responsibility for making my life as good as it can be, I have prioritized myself and my happiness. Working with, rather than fighting against, the things I know about my future has given me a greater sense of perspective and focus. It's helped me to accept what is happening to my body, even if I don’t like it. And it has led me to set up a new coaching business and experiment with ways of working, re-evaluate and deepen my relationships, establish stronger boundaries, and find a greater sense of contentment.
I better understand what I want from the next half of my life, and I am determinedly taking steps to making that my reality. Some people live life thinking that opportunities will be waiting for them when they retire, or after they find a partner, or once they've hit the next promotion at work. Instead I aim to be smart about planning for the years ahead, but I have learned not to prioritize the future, or wait for it.
In the way that fear of the unknown is balanced by hope and possibility, fear of the known can be balanced by clarity and motivation. Either way, we just have to do the best we can with the hand we have been dealt.
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About the Author:
Joanne Becker is a coach, content creator, and an advocate of being stubborn. She works with people to help them to keep going, particularly with their own small businesses, overcoming obstacles and stubbornly pursuing the things that are really important to them. She believes that the things that matter most to us are worth steadfastly striving for.