By the time I was diagnosed with a progressively disabling disease in March of 2006, I was walking with a slight limp and could no longer run or jog. Back then, my experience of disability was solely one of losing leg strength. This corroborated my naively simplistic, pre-disease definition of disability- not being able to get from point A to point B. Disability equaled wheelchair use. After my diagnosis, whenever I traveled down the worst case scenario path of GNE myopathy (aka HIBM), it always dead ended with me in a wheelchair.
I quickly learned that just because my ability to move around upright wasn’t impaired, it didn’t mean I wasn’t disabled from engaging in activities that had brought me so much joy and fulfillment throughout my life: hiking, biking, kick boxing, dancing, ice skating, skiing, walking on the beach, getting in the ocean….Though each of these abilities was painful to lose, eventual acceptance of their absences allowed me to access their alternatives. I eventually transitioned from mourning the losses to celebrating the gains that adaptive devices and motorized machines had made. In essence, I was able to appreciate that at least there were substitutes.
Then the upper body weakness set in. It had actually been there all along, but not in the significant, disabling way it was slowly morphing into. How foolish I had been for believing that not being able to walk was the most dreaded outcome of this disease. There is an easy fix for that disability. Such is not the case for hand, arm, upper back and shoulder weakness.
There are periods of time throughout the day when I don’t actively engage my legs-seated in a chair while working, eating a meal or watching TV or while sleeping in bed- but there are never moments when I don’t need to use my hands.
Early on, I mourned the losses of the fun, optional activities my upper body used to afford me: playing guitar, playing piano, throwing a ball overhead, walking while holding a beverage. But now, I’m gradually struggling to perform tasks integral to my daily life: opening jars and containers, taking things out of the refrigerator and oven, lifting something off a shelf, taking on and off clothing, shoes and jewelry, typing on a computer, writing with a pen, clipping my nails, cutting my food, firmly shaking hands, hugging. Yes, hugging.