Hands accomplish many tasks in the course of a day, a lifetime; touching, feeling, holding, manipulating, etc. As part of our body, they are part of our selfhood – who we are and how we view ourselves.
Challenged by since birth spastic diplegic cerebral palsy, my hands are a major component of my mobility. Without them, I’d not be able to use crutches, propel a wheelchair or, inside my home, touch surfaces as I move from place to place, appreciating and being thankful for my ability to live independently.
I’m fortunate that my hands were never compromised by diseases like Rheumatoid Arthritis; my eldest sister, now deceased, lived with it for the entirety of her adult life. A brother is challenged by the ravages of RA, living with it and suffering from it for decades. His has not been an easy life and by comparison, I have fared much better, advantaged by having been born with a non-progressive disabling condition so I’ve got nothing to compare to in terms of ableness; I cannot miss what I’ve never known. However, the aging process does change the landscape in subtle ways but daily life is doable as I live on my own in my own home, doing all the cooking and cleaning, with upper and lower body getting a good workout several times a day. That is a good thing. A very good thing. Freelance journalism keeps the fingers limber so I may share bits of myself through my writing.
I got my first electric typewriter for my 10th birthday and never looked back; from typewriter to computer word processors to internet, hands and finger power are critical to my existence. My world would be significantly diminished if I didn’t have use of them. I know of what I speak, recalling that time in my life, back in the 80s when I fell, dislocating the elbow on my dominant arm. Hospitalized for a month, it took 9 months to recover almost full range of motion.
Our hands are two of the most versatile parts of our body, accurate enough to paint a picture, thread a needle, or play the piano; strong and powerful enough to swing an axe, move heavy objects, or clean floors. Our hands are used in almost every aspect of daily living so it’s important we treat them well, keeping them safe. Sadly, however, there are situations over which we have no control that put our hands and other parts of our body in peril, sometimes for the rest of our lives.
Unlike the wear-and-tear damage of osteoarthritis with which I live (thoracic spine), rheumatoid arthritis affects joint lining causing a painful swelling that can eventually result in bone erosion and joint deformity. The impact of such deformity of hands is life altering and there is no going back to ‘before my hands got that way’. Many who suffer from rheumatoid arthritis have lost the ability to button shirts, to zip up pants, to put on socks and shoes, to safely pour a hot beverage. Cutting food and self-feeding becomes more challenging with the passage of time. The list of the ‘no longer can do’ is long.
Think of the hand in terms of family connections with the 5 digits representing son, brother, husband, father, grandfather. The son and brother who played sports with schoolmates, board games, with siblings, turned pages to read a book, held a pen to write an essay; the husband who signed the marriage certificate and the employment agreement for his next job; went on dinner and movie dates with his wife; the father who held his children for the first time, held their hand for first steps, though deterioration of dexterity was starting to appear. Saw his children through grade school and university as the ravages of RA stripped more of life and living away. Pain and fatigue were ever present as social connectedness got narrower for both the person who lives with RA and also those involved in daily support. Life hurts.
The Arthritis Society, with branches across the country offering a range of services, is available to assist if arthritis has visited your family. Give them a call.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with Miss Lexie the aging Maltese and Mr. Malcolm, the rambunctious Havanese. She can be reached at carmacrockwell@xplornet.ca
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