How arthritis changed my brother's life

My brother, Michael, with his granddaughter, Addi

“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

What will your hands do today?

Hands across time, from son to first time grandfather.

Joy and pain travel through life together.

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 10^th 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

Build up communities to battle isolation

In Fredericton, in our province and across this great country is opportunity to learn and to teach. I was struck by this on a trip to the big city recently as my friend and I talked about all the new housing developments going up in and around the city, a common trend across the country. I have often wondered if the many apartment complexes have a ‘good mix’ of young, old, persons with disability, students, retired, stay at home Moms. That sort of thing. Within those groups would be amazing resources for learning, for teaching. Then came the tiny home developments. What a great idea for those looking to find a way out of poverty. Those of us who can, have a duty to help. That’s as it should be.

COVID has changed the landscape of daily living, affecting the very young and the very old. Housing has changed for many; downsizing for seniors, sometimes the tragic loss of home due to inability to afford rent or mortgage when employment income doesn’t meet demands of costs of daily living.  COVID isolation has impacted everyone. Know that.

Many cities have certain areas, by virtue of location, street address, being identified as ‘bad neighbourhoods’. The reality is that not everyone who lives on those streets, in those subsidized housing units, are bad people, criminals, drug addicts, or abusers of women and children. Low income housing developments should not immediately imply that the people are ‘less than’, ‘low class’, ‘no class’, ‘users and losers’. We can’t know what life circumstances have invaded the personal lives of those who live in such places.  At least they’re not on the street, challenged by the elements and becoming sick in both body and mind. For that, they are grateful. Must their circumstance continue to punish them when they are trying to get out from under, many with a new start, in a new place? 

In holding on to misguided beliefs about a person because of where he lives, we deny ourselves many opportunities to learn and to teach. We deny our children. We can’t afford to continue with that practice if we, in this province, are to survive. To grow. Our youth is our future, with some young people wanting to stay and make their own ‘grown up’ lives here in New Brunswick, as we ‘of a certain age’ are moving closer to the finish line of our life’s road. In times such as these, young connecting with old is a good thing.

It is therefore critical that we adopt a more inclusive attitude towards the younger generations. Some of them are lost in depression because of loneliness.

Living in isolation in all those pretty houses is frustrating happiness and emotional growth across ages and stages, across generations. These challenging times call for us to become WE people, reaching out to lift up those who need encouragement. Defying health and wellness protocols is not going to help anyone in the long term. Folks have lost sight of that reality because they feel that their rights have been impinged upon. I have to say, that selfish view is insulting to those who have been isolated for years due to circumstances beyond their control and then slapped down again by COVID. Imagine their stress. Extend your hand.

I’m not alone in the belief that blending of people from different walks of life in various housing developments is an ideal way for young and old to meet and get to know one another and not be weighted down by how much money so and so makes or who is driving the best car, the fastest car. The circle of life lives on, on any street in any city or town in the country. We need to gather up a bunch of circles and reacquaint ourselves with lives, not just living in isolation with all our stuff. The happiness stuff brings is fleeting.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside   Fredericton, NB with an aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at Carla MacInnis Rockwell