“Do not go gentle into that good night.” [Dylan Thomas]
When rheumatoid arthritis takes up residence in a body, whether young or old, it then becomes part of the family dynamic, from spouse/partner to children, other family members, and friends. Even the family pet is tuned in to the ‘differently able’.
Over time, as the family allows, the community becomes connected to them, whether it’s with respite care services, marriage/relationship counselling to counselling of youngsters struggling with how they’re feeling about a parent’s illness and inability to do regular Mom and Dad things; the myriad challenges go along and grow along with the family for the rest of their lives. That’s the reality of rheumatoid arthritis and any other such chronic illness impacting quality of life; it’s a most unforgiving disease.
Communication is absolutely critical to sifting through the mess of emotions that change from one day to the next, and those feelings intersect with each member of the family who is concerned about the health of the one who’s living in pain, anger and confusion.
My youngest brother, Michael, passed away on 8 March 2022 at the age of 65, after living with rheumatoid arthritis since the age of 21; diagnosed while taking his second degree at UNB. Michael was also youngest of the 8 children in Clan MacInnis of Bath, New Brunswick.
Our eldest sister, Maureen, was also challenged by RA. Their worlds, with the passage of time, as spouses and parents, would be forever altered as to what they would no longer be able to do comfortably and free of pain. I can only imagine how difficult their lives were. Sick and tired of being sick and tired.
My brother’s wife, Trudy, met more and more of Michael’s daily care needs as they grew older together and his limitations were more pronounced. As well, she cared for their young children until they established a solid level of independence. My brother was a loving and involved Dad and his children appreciated all that he did for them and with them. There was never a question about that. Michael was fortunate to work in a profession where he enjoyed what he was doing; he was a teacher, well respected by colleagues and students alike. In home tutoring, he kept his hand in.
Defined, rheumatoid arthritis is a chronic, progressive, autoimmune disorder that causes widespread damage to multiple organ system, but more known for attacking joints, triggering painful, disfiguring and disabling damage. A key component is an overwhelming fatigue.
My brother and sister had persistent disease throughout their lives but persevered, with their children testament to their success. Another brother has episodes of gout, while still another brother lives with psoriatic arthritis.
The pain and fatigue tied to a diagnosis of RA can affect one’s ability to carry out daily tasks, whether at home or at work, having a profound impact on family and social relationships. One cannot be cheerful and upbeat all the time, especially when their position in the family shifts more into a caregiver role. Understandably that can weigh heavily on one’s sense of worth and well-being. Feeling emotionally low can impact relationships outside the home as well; relationships that are often sought out as stabilizers. It’s important, as one is able, to work at maintaining those connections, as situations change and the need for support increases. Asking for help is good medicine.
Children who’ve grown up with the disease process active in their family have had to learn a particular set of skills not required by their peers and sometimes they’re called upon to do things to assist the parent with disability. Key is to limit the ‘asks’, mindful that they’re children first. By virtue of their temperament, some children quite naturally grow into the role of ‘assistant’ and don’t view it as a particular hardship.
With the death of my brother, his children lost their Dad, his wife lost her husband, but they gained the one thing that will sustain them forever – the profound love of a guy who has shown us all how it’s done in spite of physical pain and emotional fatigue.
Rest in Peace, Michael.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at carmacrockwell@xplornet.ca
Your brother was very brave
ReplyDeleteHe faced daily challenges that for most of us would be unimaginable
Thank you for sharing his story
And for enlightening us about RA