Get Positive – A piece by FSHD Patron Justin Reid

You hear it a lot. “Just stay positive.” It’s definitely good advice but sometimes I feel like yelling in their face,”Well OBVIOUSLY !!!”. If it was easy, if I could just flick a switch and be positive I’d do it !

So how do you get positive when you’re feeling overwhelmed and defeated ? At the age of 14 I certainly felt like my world had fallen apart. When I was 13 my father left the family. 6 months later I was diagnosed with FSHD.

At that age I didn’t really understand what the diagnosis meant. From the faces of my family and the doctors I knew it was serious and it was bad. The specialist explained the nature of my condition and what it meant for my future. He painted a picture of continuous and inevitable physical decline. On a chart you would see the line always falling, with some plateaus where the condition is dormant, but always falling again as the Dystrophy became active. The future was all downhill. How do you get positive about that ?

The short answer is that you can’t. I spent a lot of years being angry and fighting the physical decline. Classic denial I suppose ! It was a war I could never win. Eventually I asked myself the question, “Why am I fighting this war?” The answer came, “To find peace.” I worked with a counsellor and did some reading, including a book on Buddhist philosophy. One sentence in this book changed my life. It said,”The causes of suffering contain within them the means of release from suffering.”. Somehow this seemed like the answer I was looking for.

I thought about that sentence a lot. What was the secret that lay hidden in those words ? Eventually I decided they were telling me to stop blindly fighting and look inside myself with fresh eyes. To see my life as more than just a physical process. To see my life as a journey of personal evolution where adversity drives healing, learning and growth.

With this realisation I saw that as my life progressed over time and the FSHD took its inevitable course the difficult times offered rich opportunities for self evolution. Opportunities to find within myself strength, courage, wisdom and compassion. Now the chart of my life became a continuous and inevitable upward line. Now I had something to really get positive about.

Of course it sounds great in theory but living it in the real world is a different story. I still get frustrated and feel down when things are difficult and seem unfair. I still react to situations and have to catch myself before I spiral down into negativity. But now I’m always looking for the lesson, for the opportunity to be wiser and stronger. To be a bigger person. The opportunity is always there.

So now when someone says to me, “Just stay positive.”, I smile and say, “Yeah, thanks.” and think to myself, “I’m already there buddy, I’m already there !”.