I am fifty eight years old and was diagnosed with FSHD when I was twenty-four. I was diagnosed by a professor in London who assured me that this was the “best disease” I could get and to go forward and live and enjoy my life. He said that I would have trouble climbing stairs when I reached my sixties. This disease seemed like a piece of cake. I was strong, athletic, traveling the world, working and enjoying life. The sixties were an age group I had no empathy with at that time and I went forth without too much concern. My partner at the time soon became my husband and we then became parents, deciding to do so because our lives were wonderful, why would theirs be any different? I had never had any contact with another person with the disease and there was little information about FSH.

Our lives as expats took us around the world, living in England and the USA, where we now spend several months of the year. We have two daughters, now in their twenties, one of whom has been diagnosed as negative for the disease. Our younger daughter is yet to receive an official diagnosis. And as I nudge towards my sixties, that diagnosis has become reality. It was in my early fifties that the tripping and falling began. In those days it was infrequent and I could still rise from the floor without too much difficulty. My husband’s work required many formal events and I began to make excuses about attending, the real reason being that I could no longer walk in most shoes. I fell in front of my daughters basketball game, the grandstand full of people. I fell in so many places that people assumed I was drunk. I fell on the footpath in Double Bay and a woman crossed the road to avoid me. I fell onto a friend’s boat. It was suggested that I use a cane and the thought horrified me. I had spent years and energy trying to look “normal”; arriving at venues first so that I could climb the stairs without witness, sat in the best spot for getting back up again; avoided energetic outings, hikes, long walks, football games. What was I going to tell them? And I knew then what I’d tell them. That I had hurt my leg. And then one day I really did hurt my leg, when I simply tripped in my bedroom and dislocated my hip. The injury changed everything and was a turning point in facing the realities of this disease. I came within inches of never walking again.

I changed my attitude about FSH after this time and had my “coming out” party. I organized a fundraiser in Michigan, where we were living at the time, and invited everybody I knew. I stood in front of 220 people and told them about FSHD and what it was doing to my life. When I began to speak, fifty-five years of anxiety and pain poured out and I sobbed for the first half minute. It was liberating and I was surrounded by caring people who already knew I was struggling. I was the person who needed to change.

I now use a mobility scooter when I want to go distances so that I can join in activities with everybody else. I often ride for miles alone just to feel that wonderful pace that once came naturally. I use flotation devices for safety in the water and make every effort I can to get into the wonderful ocean pools in Sydney. I walk slowly with a cane and sometimes two canes. I use a walker if I’ve fallen and hurt myself. I switched my little sports car for a soccer mum van with a lift in the back to transport the scooter. I have a handicap parking sticker. I have grab bars in the shower and take a portable one for hotels when iIm traveling. I buy furniture that allows me to lean with my elbows to brush my hair. I hold a cup with two hands to get it to my mouth and my table manners aren’t as good as they were when I was ten years old. I make fun of the disease and I curse the disease.

Disease fast tracks many things in life. FSHD is an aging disease. We become old people; the way we walk, the devices we use, the shrinking of our muscles and loss of agility. We are not the people in media hiking mountains and biking trails. Our confidence is damaged along with our physicality. A mental battle begins in every situation and life loses spontaneity. The ultimate challenge is not staying on our feet, but reinventing ourselves as interesting, happy and worthwhile humans. And then one day we realize that this is the goal of every human, with or without FSHD.

Michelle Mackay