Health care professionals do battle with poverty

 

Photo: Unsplash

From my perspective, tackling poverty as a health issue is a no-brainer. It’s vital front line health care groups, doctors, nurses, and other such professionals be more visible as players in developing solutions to problems that can be lessened if not eliminated with sustained collaborative efforts amongst those entities and the larger community. By virtue of their occupations, they have a finger on the pulse of what’s driving the cycles involved in making change and improving lives. Educating patients about healthier choices by virtue of their positive impact will, over time, break into the poverty cycle. Over an extended period, the chances to totally eradicate poverty in some segments can be a reality. It requires commitment. It requires all hands on deck.

Admittedly, the daily office caseload of our physicians is stretched as general practitioners reach retirement age; some stay on because they know their patients will be well and truly stuck if they close up shop. At some point leaving the post will happen, it’s an inevitable part of one’s work life, and doctors are no exception to the desire to retire once they feel their time of service must come to an end. In fact, two of my childhood neighbours, Drs. Bruce and Colin Lockhart are leaving their practices to settle into retirement. Bruce was a classmate of my older brother, Robert, while Colin shared a classroom with my youngest brother, Michael.

That they got degrees, became doctors and then set up shop in the place where they were born and raised speaks to their genuine love of the rural New Brunswick life. There’s something to be said for the pace.

While they and their colleagues are on the front lines and ‘out there’ caring for patients, conducting in office exams and consultations, dispensing prescriptions, ordering tests and following up with specialists, there are a few other things that can be done during an office visit that will improve quality of life for their patient and for the families of those in their care.

Asking the revealing lifestyle questions enhance the doctor-patient dynamic — what a patient had for dinner the evening before, or what he had for breakfast or what’s on the menu for later in the day is very telling about what goes on in his life. Asking how his day or week is going is another ‘tell’. If there are disclosures about stress with regard to food security, paying a utility bill or finding a better job, or finding a job at all, the physician can jump start the process of care, of help, by having a list of organisations and the names of contact people who can intake on behalf of their patient. Sometimes, people don’t really know what’s out there with regard to various programs that can improve situations in the long term — residential rehabilitation programs to make a home more accessible; home health care programs, Meals on Wheels, transportation services to get to appointments, and so on. Having a continuity of services in places goes a long way to improving overall health and wellness and that reduces patient stress and also reduces frequency of doctor and/or hospital visits. With this access an impact is made on the poverty reduction as patients become more relaxed and at peace with lifestyle changes that are showing positive results.

Physicians and other givers of care are in the perfect position to guide patients to more healthy ways of living that don’t cost a lot of money and ultimately reduce the tax on their own time and energies. What’s wonderful about these interactions is patients will then share what they learn through this process with others – perhaps family members or friends are struggling with the same concerns. It’s true – knowledge is power, and getting out from under is not out of the realm of possibility once a cohesive plan of action is put in place. Sadly, in some cases, poverty has become a significant multi-generational concern. Does life really have to be like that?

As a physician gets a picture of the home life of a patient, even in thumbnail sketch, s/he can then develop different prongs to the treatment approach. Key is not imposing personal belief systems with regard to a patient’s lifestyle choices. Better is to offer different options; ideally, as with guiding children, offering two choices works well. Taking a few minutes to discuss with the patient a few achievable goals is a good place to start – as example, encourage the patient to get outside and go for a walk or a wheel. If that’s not possible, just standing outside and doing some deep breathing exercises can help a body. Each day I engage in purposeful breathing exercises as well as quads and core strengthening exercises – all in aid of ensuring that I am still able to continue walking and maintaining my home on my own with only limited assistance. As we get healthier, we are inspired to venture outside our home to experience activities that don’t cost any money at all; in fact, they reward us with social connectedness which really does have impact on poverty reduction — comrades-in-arms joining together to do battle with a shared enemy. Together, we can rise above – it’s a daily commitment to making changes.

Happy New Year to all!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

All I want for Christmas is ....

Photo: Unsplash

Choosing Christmas presents for seniors is a particular challenge since many will say they have all they need or want and don’t want a lot of fuss. Make no mistake, though, many will morph into small children if they don’t get all that fuss and fanfare. So it’s important to really make a wow impact with gifts you choose for that someone special in your world who happens to be of ‘a certain age’. Certainly, we must not forget the reason for the season, so it might be worth considering the gift of transportation to various events of the season for those who no longer drive or who prefer not to drive in winter. Many still enjoy the community of a church service so offering to get them to the church on time for the Christmas service is a welcome and very thoughtful gift.

Many seniors on fixed incomes are challenged with meeting costs of pet care and feeding. Find out what their needs are and fill in the gaps. Pets provide an emotional connection that contributes to physical and emotional health. Yes, it’s true!

Uncluttering gifts, especially at holiday times such as Christmas, go a long way to enhancing the health and wellness of the shut-in or otherwise isolated. Bringing a meal to share is a gift that reaps many benefits for both the giver and the recipient with residual effects felt by the recipient lingering long after the dessert is gone. That emotional connection, if only for a brief period, is one gift that has no price tag. It should be remembered that gifting in this way isn’t confined to the holiday season. It’s something that people can do with and for each other throughout the year.

Another uncluttering gift is that of helping a person actually declutter his spaces. Very often, those with physical limitations due to life long disability or folks in physical decline as a consequence of advancing age or illness, or who are experiencing depression, whether mild or full-blown clinical depression, which may send them to bed for days at a time, may not be able to keep up with maintaining living spaces the way they used to or the way they’d like to. Key here is not to bulldoze your way into their personal spaces; boundaries must be respected. Gently suggesting to your friend or family member that you are free to ‘help’ them dispose of 6 months worth of newspapers on the living room sofa is a start. Baby steps. Just keep taking the baby steps until the two of you are walking through the spaces with a growing confidence in letting go of ‘stuff’.

A few months ago, I spent hours cleaning spaces that I find particularly awkward and a tax on my energy. I finally bit the bullet and purged several base cabinets in the kitchen, taking the ‘just toss it’ approach. Spaces were emptied, vacuumed, scrubbed. What remained was reorganized. My goal, and so far so good, is to establish a rotation of use for various appliances - a metal insert slow cooker roaster is better suited for certain dishes while the ceramic insert ‘official’ slow cooker is ideally suited for other things. To avoid a lot of bending over and reaching into cabinets to lift out some heavy cooking appliance, I leave my favourite, often used ‘slow’ cookers on the counter. Those less or rarely used appliances are given away. Do you have such appliances in your cupboards? You know what to do! I’ve given away a few appliances that after many years of use and enjoyment needed to find another home, used by someone who enjoyed kitcheny things as much as I do. A dehydrator was gifted to my sister in law.

If you have several counter top appliances that you’ve not used in months, donate them to your local Habitat to Humanity store or other such outlet that takes donations. I had no problem ‘letting go’ of the stuff in the kitchen cupboards.

After a friend or family member has felt safe enough to let you help with decluttering, leave them with an uncluttering gift, perhaps a pan of lasagna, portioned and wrapped in single servings ready for the freezer. If you’re invited to join your friend for a lasagna lunch or dinner - accept! That date has potential to create another opportunity for you to take another step in helping with decluttering. Swapping an uncluttering gift with a period of decluttering also has potential for an added bonus - meeting new people.

Dropping off things you no longer need to various service agencies gets you connected to people with whom you may find a common interest. Those networking opportunities serve also to break into the isolation felt by and those who otherwise may feel they don’t ‘fit’ anywhere and with that comes improved physical and emotional health and wellness as time away from the ‘safe zone’ is increased. Lapses and lags in physical and emotional health often contribute to cluttering/hoarding, so being able to get out and about to engage in meaningful social gatherings may help resolve a lot of anxiety and dial back the ‘need’ to hang on to stuff. He who is isolated may start inviting people ‘in’ and the reasons for concerning behaviour may melt away.

Perhaps today will be the day you’ll explore a plan to share both uncluttering and decluttering gifts.

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 Carla MacInnis Rockwell

2024 is almost here, folks

Photo: Unsplash

The holiday season is upon us but sadly, there are so many who have lost their joy, fallen into the struggle of the day to day stressors that test their resolve to keep going. But keep going they must. What other choice is there, really?

To tree or not to tree. For me, that is the question.  A few weeks ago, I had that conversation with the young woman who helped me clean my home. I haven’t had a tree in several years, though I do dress the dining table and put out a few seasonal ‘pretties’ in the living room and in the TV room/office where I spend most of my time. I’ve decided to make the effort! We’re treeing!

As we approach 2024, full of hope and promise, I find myself reminded of what a major effort it is for so many of us to ‘just keep on going’; to be happy. Persons with orthopaedic disability, who are able to function with some degree of mobility, exhaust themselves physically, emotionally, mentally and spiritually each and every day, perhaps questioning the ‘why’ of their existence. Caregivers are struggling with their own demons of fatigue, frustration, fear, anger, and even resentment. They can’t give up. They can’t give in. In their minds, failure means defeat. How wrong they are!

Government systems of support must take a closer look at what the long term, real needs are for both those who require in-home help on a daily basis and those who provide it — doctors, nurses, health professionals generally, teachers, pastoral care workers. Respite for caregivers, often a parent or sibling, is paramount. They are the often ‘tapped out’ resource that never get enough acknowledgement or ongoing support.

From early on, if I was to be a happy person, accepting myself as I was would be necessary so that I could develop the gifts I may not otherwise possess had I not acknowledged that my ‘different’ness was nothing to be ashamed of, to wish away, or to ignore. In reality, ignoring it was never an option. I liken my differentness to a companion who will be with me forever; a part of everything I did, from rising in the morning to going to bed at night. My companion’s name is cerebral palsy Perhaps, in large measure, my companion would define my character, shaping the stuff of me that would ultimately be the best of me. 

I had to accept that my life was going to be different --- not in a negative way, not special — just different. I certainly never wished to be someone else, though I did wish that I was more able in terms of mobility, as in being so, I’d have possibly been more readily included, particularly in the formative years when children are establishing bonds and social networks.  In being more physically able, my career choices would have been expanded, but would things have gone differently? Who knows? There were and are always going to be things that I will never do by virtue of living with cerebral palsy. I don’t use the term ‘have’ when speaking of my ‘companion’. 

Too often, people define happiness based on what others bring to them or share with them, whether it be the tangible or the intangible. Sitting back and waiting for happiness to come to us is wasteful of time and energy which could be better spent creating our own happiness and simultaneously spreading that  happiness around us, to siblings, to friends, to colleagues, to a spouse/partner. Happiness flows out, flows around, then flows back after bumping about to touch others; a complete circle. 

We who live with limitations to full participation in daily life learn ways to participate and create a unique happiness; this is, of course, contingent upon whether our intellect is intact and if we have even a limited awareness of our surroundings. It’s long been acknowledged that even the most profoundly disabled, in the absence of full cognition, can still experience happiness. Happiness is not something that should be weighed or measured, as what makes me happy may not make another happy. It should not be our job to ‘make’ another person happy – to position ourselves as a ‘happy maker’ has potential to be exhausting; ultimately, it may well destroy relationships. 

Frequently, I have heard people say that they wish they were happier, which begs the question – what do they believe could or would make them happy, happier? Sadly, in this ‘stuff’ driven age, people assign a happiness quotient to the quantity of their accumulated ‘stuff’ – I was almost a victim of that thinking until I abandoned it years ago. Certainly, I enjoy an array of creature comforts, some by necessity to make my life easier as I age with a number of disabling conditions. I also enjoy a number of things that don’t fall within the necessities of life purview – fine scotch, fine foods, my books and music, pleasant décor; as with all things, never anything to excess. To coin an oft-used phrase – all good things in moderation. That has defined my life from the outset with regard to establishing my selfhood, my personhood – moderation. 

As you chart your own course going into this new year and beyond, keep your eye on your own prize. Your happiness is inside you — take some time to find it and help it grow! 

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 Carla MacInnis Rockwell

A walk in my socks

 

Long 'Scotland' (front row) socks are favourite winter bedtime footwear.

Walking After Midnight; A Walk To Remember, Walking In The Rain; music and movies  and walking. Walking by definition is to “move at a regular and fairly slow pace by lifting and setting down each foot in turn, never having both feet off the ground at once.” And then there is my style of walking … in socks! 

What shoes were to Imelda Marcos, socks are to me. I have red socks (lots of those!), blue socks, blacks, whites, stripes, socks with stars, socks with little flowers, thigh high socks from Scotland circa 1976; 4 pairs my mother brought back from a trip across the pond. I still wear them, but only in winter to keep my scrawny legs warm. And then, my favourite, chenille aka fuzzy socks. Multiple pairs to match PJs. Call me OCD if you must, but my fashion sense is impeccable. 

Walking in my socks is the preferred mode of moving about now that I’m a senior citizen. Now, there’s an OMG moment. I don’t feel like a senior citizen. Long before I became one, I was an infant, then toddler, but I didn’t toddle. I couldn’t toddle - at least on my own; spastic diplegic cerebral palsy was an impediment to not only toddling but to many other things that involved movement. Spastic diplegia in the family of conditions related to cerebral palsy involves involuntary movement in the legs; by definition, diplegia is exclusive to affecting the lower extremities. Where those without interruption/disturbance to the milestone of walking do so naturally and ‘on time’, I was taught how to crawl, to sit, to roll over. Not unlike how one teaches a puppy. Now, there’s another story! :)

For many years, I was exercised, with the legs moved this way and that, patterning the steps involved in walking; standing, putting one foot in front of the other, lifting the left foot and moving it forward, then the right foot, and so on. I didn’t have much rhythm, at least not right away. That would come later. But I love music and it was music, lots of it, that was part of what got me where I am today. All involved in my daily therapy played records of their favourite genre, which became my favourite music. When my legs weren’t being twisted and stretched like pretzels, they were encased in ugly heavy metal braces attached to even uglier brown shoes . My scrawny flat feet were slipped into cream coloured Vyella knee socks that had an extra wide band at the top to cover my knee as the brace had a leather ‘knee cap’. Always the cream socks.  Did my love of socks of many colours start then? Possibly!

I was required to spend a certain amount of time each day wearing the braces; they absolutely had to be worn at school. Period! At home, freedom ruled and I was reprieved from the leg weights, but socked! I’d  shuffle around the house but be reminded to ‘heel-toe’ as I made my way around, touching walls and furniture for balance. Early on, I was quite skilled at picking my feet up without shoes, and actually executing a perfect heel-toe. Gold Medal 10 worthy!!

Christmas was the time for socks - the coloured ones. I loved them. They were special and I didn’t like getting them dirty, so I didn’t walk in them. I wore them in bed because my internal thermostat, then as now, was out of whack and my feet were always cold. 

One thing I’ve always known since I was a small girl was that moving and movement would be critical to my overall health and wellness. Now, at age 69, I still move albeit more slowly. Wanting to find new and different ways of staying fit I incorporate a number of things into my daily routine that are, at closer examination, forms of therapy. While standing at the counter preparing meals, I’ll do calf tightening exercises, alternating left foot, right foot. Then, balancing myself by placing one hand or both on the counter, I’ll stand on my tip-toes to and do quad strengthening sets, usually 10 reps. In winter, four times daily treks to the den is great exercise. too; I have what I call ‘the den’ socks, worn over my daily socks to keep them clean from debris from compressed wood bricks used to heat Chez Rockwell. I have standards!

Though I have very good posture, both sitting and standing, core strength is lacking and because osteoarthritis of the thoracic spine is a feature of the cerebral palsy, I was looking for ways to address maintaining spine and bone integrity. I found this site with a group of videos featuring exercises for seniors and those like me who cannot move with ease but want to stay fit, or at least make an attempt at self-improvement. One small step, right? 

Check out EXERCISING WHILE SEATED which outlines great exercises that ensure safe movement. Perhaps you might be able to give your own body a tune-up. Let me know how you’re doing because I really do care! If I’ve motivated you to get up and move a bit more each day, that’s a good thing. Now, go out and grab a friend and get him moving. Or, you could become a dog walker for someone who can’t easily exercise their pooch. Compassion in action is the order of the day, people.

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 Carla MacInnis Rockwell

Copper wire theft is a manifold crime

 

Luke Sharrett/Bloomberg

It happened again!! For a third time, I became a crime victim and I am all at once furious and concerned. On Friday, 13 October 2023, I and my neighbours were assaulted by thieves – copper wire thieves. Make no mistake, it is not a victimless crime. One of my neighbours, Sarah English, who works with the Stanley Volunteer Fire Department, came to my home to do a wellness check. She had  called Bell Aliant to inform them of my ‘person with disability’ status and that I was home alone. She told me to stay in touch via Facebook if I required assistance of any kind. Knowing that Bell Aliant  was prioritizing medical/health needs in situations like mine is vital to ensuring that those among us who are least able to help ourselves are reassured that all that needs to be done as expeditiously as possible will be done. I am thankful the thievery didn’t occur in the midst of winter, in frigid temperatures.

The last time it happened was on the morning of February 16th at around 11:00a.m. Before that my safety and that of my neighbours took a hit on 18 January 2023. Two criminal acts against home owners and others within a month. A month! What these persons fail to realize is that they’re stealing more than copper wire. They’re stealing security and peace of mind. Clearly, they give no thought to what their criminal behaviour is doing to those whose lives have been turned upside down by their cruel act. Yes, it’s cruel!

Since I don’t drive, my home alone status is impacted by any number of events that would require me to be able to leave quickly and easily. I’m glad that I have a network of neighbours who have, over the years, made themselves available to me should I require any sort of assistance given my mobility challenges.                                    

The crime of stealing copper wire and selling it to recyclers is one crime. Manifold crimes fell on top of that when hundreds of lives were put at risk by that one act of disconnecting people from services they need and use on a daily basis. Not all rural dwellers have access to cell phone service and not all cell phone services function with a high degree of stability in some rural settings. That’s the nature of aging technology in rural areas trying to pair with modern communication trends. As well, that act of vandalism elevated the stress level of those who rely on services like Lifeline which is landline dependent. Not every senior can afford both a landline and a cellphone.

In my reading, I learned that copper may be stolen from electric poles, power lines, substations and company storage yards with cables being cut in short lengths  with saw, bolt cutter or axe, with the  plastic coating being removed, as raw copper is more valuable. 

Copper thieves are receiving cash from recyclers who often fill orders for commercial scrap dealers. Recycled copper flows from dealers to a range of specialized applications on an international scale. It seems like an attractive venture to someone who doesn’t have a full time job and is looking for an ‘in and out’ gig to earn a lot of money over a short period of time, or someone who’s keen to go all in and make a full time job out of ‘cutting the cord’ of anyone and everyone in their community; effectively putting lives at risk! 

Yes, copper theft can make some people dead. Let that sink in. And let this sink in – copper thievery can make the criminal dead if he doesn’t know what he’s doing and is cutting chunks of cable willy-nilly without regard for the steps required to safely complete the process. Do they work in pairs? In teams? What if one of the wire thieves is struck down? Do his companions abandon him? 

          And what do we, their victims get? The medically fragile, housebound, in many cases and having no access to a cell phone, is truly trapped. Life Line doesn’t work without a phone connection. A person impacted by the criminal act of copper theft could be their own mother or father, or some other relative or family friend. Do they find their spine, their moral compass and stop. Do they turn themselves in, recognizing that they have to pay for the crime they’ve committed. Or do they keep going, and wait for the law to catch up with them. What are they thinking about as they’re up on a pole cutting lifelines for those in need? Is a Mom going to rat out her son who is involved in criminal activity that may ultimately take a life?                

Let’s hope the courts will expeditiously take care of the morally bankrupt who’ve put lives at risk. A slap on the wrist isn’t enough; community service and an impactful fine rather than jail time would be more of a deterrent. Perhaps restorative justice could be part of the process as well. This is serious, people! It’s time the courts took a hard line with sentencing. Lives depend on it.

If you see something, say something! As for me, with the help of two techie friends who visited on Sunday, I’m looking to get a barebones cell phone for emergency use. To be reliant exclusively on a landline is a fool’s errand and one I cannot afford to continue. 

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 Carla MacInnis Rockwell

Tenaciously aging in place with terriers

 

 Miss Lexie and Mr. Malcolm make sure things are done the way they're supposed to be done

Co-housing, aging in place; aging together. It’s a trend gaining in popularity in Canada, the US and around the world, having its origins in Denmark. To me, it makes a lot of sense but it’s not to be entered into lightly — rather like marriage. It takes commitment and a lot of work each and every day. 

For myself, I’m aging in place with terriers, one having recently celebrated her 17th birthday.  In my 69th year, I may well be the oldest independently living spastic diplegic responsible for home and hearth and two salad hounds who like to bark. We’ll call it singing. That I still walk, surface touching in the house, with occasional use of walker to move things about, is testament to a desire to do my own thing for as long as I am safely able.                                            

In New Brunswick,  as was the case in many provinces across the country, most families were comprised of several generations living under one roof back in the day when farming communities were thriving and it was ‘all hands’ to work the land. At the time, gender played a role with regard to tasks. Today, men and women have a hand in all manner of shared tasks which works well when combined with communication and compromise.

Communication and compromise are the glues that keep a relationship intact and growing and going along in a healthy, constructive and productive way. That’s why co-housing makes sense, especially for lifelong friends who believe they’d do better with each other than on their own. Together, they have a better chance of not becoming nursing home statistics. Government take heed. Real estate developers and builders, listen up. We need to rethink where and how our seniors live. 

When we lose the supports of the traditional family dynamic, through death, or family members moving to other locations around the world, we begin to feel the stress that those changes impose upon our daily lives. Our physical and emotional health often takes a hit and we experience one or more health situations that may not exist were we not on our own. A viable solution is to share the new reality with others, whether a close friend, or someone interviewed through the process of finding a housemate or 2 or even 3. Sort of like the multi-generational family farm without the farm.

Co-housing also means sharing the bills and the responsibilities of the house, going beyond practical financial arrangements. It’s cheaper to live with somebody else while at the same time contributing to our physical and emotional wellness. Sharing and caring together enhances quality of life and puts off an often inevitable transition into nursing home/assisted living care.

New Brunswick needs co-housing, as people currently aging in place alone in sprawling homes that are becoming more difficult to maintain, would be far better served sharing with a long time friend in a similar situation. The financial health of the province’s systems of care would also improve as they would be less burdened with people who would be far happier in a space that’s easier to manage. Co-housing combines the best features of home ownership with the added layers of security, companionship, community spaces in buildings that are on the ‘campus’, within walking distance. Movie nights and pot luck suppers in the community lounge. Then, back to your own private home with your housemate. You own it. It’s yours. Having places to go and people to see is far better than any anti-anxiety medication or sleeping pill. The possibilities for a long term ‘people prescription' are endless.

I believe that developers in this province and beyond would do well to embrace the idea of co-operative housing units, which include all the features that are critical to safety. Invaluable would be consulting with persons with challenges to daily living who know, based on life experience, what would be needed in a home for older people who want to ‘age in place’. Ask me about kitchens.

The cost of purchasing a property in a senior co-housing community is comparable to buying a house in a traditional community; further, buying a home in a newer development, downsizing to a smaller property, can reduce maintenance and overhead costs such as utility bills. To further reduce expenses, some senior co-housing communities also encourage neighbors to share resources such as lawn maintenance equipment. What a great way to meet `n greet.

Fredericton, in particular, and New Brunswick, in general is ideally suited to multi-generational co-housing, given that Fredericton is a ‘university town’, and New Brunswick has several university campuses and lots of students in need of housing. Friendships across generations is critical to emotional health and wellness — ask any senior who only gets to see grandchildren a few times a year, if that.  

Co-housing with age related peers and multi-generational co-housing contribute to improved physical health, reduces the number of seniors living in poverty, which impacts wellness. In my view, co-housing is necessary for survival, particularly for those ‘at risk’ populations who would benefit from a sustained people connection. To learn more, visit Canada Co-housing Network.

For myself, if I was fortunate enough to match with a compatible housemate, I’d certainly be amenable to opening the doors of Chez Rockwell to a roomie. Must love dogs! 

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 Carla MacInnis Rockwell

                                                                         

Keep the home fires safely burning

 

This stove looks a bit like the one in my den.

        Winter's fast approaching. Are you ready for it?

Growing up in rural NB, in a large 3-storey  (4 if the basement was included; the eldest of my 5 brothers had a ‘jail’ down there) that was heated with oil, it was always a tad chilly. Over the early years when my parents and the 4 eldest moved into the big house on Church Street, Dad had Rusco windows installed. Still chilly! Four more children later, winterizing the house was put higher up on the ‘to do’ list. When I was a pre-teen, I told my Mom I wanted fireplace in my bedroom, the largest on the 2nd floor, to accommodate some of my physiotherapy equipment. Kids say the darndest things! 

Suffice to say it never happened. Years before I was a twinkle in the eye, there had been a fireplace in the living room, with the end of the wall being open to a hallway which led to that 2nd floor.  Dad had the brilliant idea to close it all off, installing bookcases in both spaces. Turned out that made a lot of sense, with the bookcases beginning half way up the wall to allow for tables or small seating to be positioned below to make more efficient use of the space. Though his speciality was anaesthesiology, Dad had a flare for design and building things. 

Fast forward a few decades and a few living spaces later, none of which had a working fireplace, my husband and I moved into our current home in the fall of 1991. I loved the layout of the main floor as it suited my mobility needs from the outset. To access downstairs to enjoy the den space with the wood stove,  two railings were soon added; actually one was a medical grade grab bar secured on a half wall and a full railing installed on the other side. Safety first! 

Neither my husband nor I had experience with a wood stove but we educated ourselves in preparation for our first winter fire. What we didn’t anticipate was something that was not done, unbeknownst to us. The flue and stove had not been cleaned by the previous owner and we were not told that it had not been done. It never occurred to us to ask, so that was on us. 

The day of our first fire, it got very hot very quickly. Smoke billowed out from around the stove door and filled the downstairs space. Smoke alarms on both floors were blaring away. I wasted no time, moving as fast as my spazzy legs would take me, to get the geriatric Westie and the young Cairn tethered and put outside. Fire department was called and on scene in short order. At that time I met one of the volunteer firemen, Stewart Smith, who wasn’t long giving the older terrier oxygen; she’d fallen over on her side, overcome by the smoke.  A pair of his team went downstairs, through the front door; another two up on the roof to drop a chimney bomb into the flue. After a conversation with Stewart and one of his fellow volunteers, we learned what to do to prevent such an occurrence in future. The flue was cleaned as soon as we could arrange it and was cleared for use through our first winter. We had it replaced for the following winter with all appropriate fire proof pads in place; on the floor under the stove and on the wall behind it.  Those steps are vital so as not to invalidate home owner insurance.

Recently, I had the flue cleaned and eaves troughs cleared; the latter is another vital part of home maintenance to prevent foundation damage. The stuff I’ve learned! The guy who did the jobs said the flue was not too bad with hardly any creosote. That’s because I used compressed wood bricks  which burn hot and clean. If using cord wood, flue cleaning saves lives! Final prep involved the stove door, testing for air tightness of the stove. Put a slip of paper between door and stove, then latch the door. Pull on the paper. If it comes out with little or no resistance, it’s time to replace the gasket (that braid around the inside of the door) as your wood burning heater is no longer air tight.

My stove failed the air tight test and I bought a new gasket. My visiting physiotherapist was helpful to me in choosing the right size since he’s replaced the braid on his own stove. It’s nice to know folks who provide tips and tricks so I can stay safe as I live independently, aging with multiple disabilities.

Next up, arranging to have this winter’s supply of compressed wood bricks delivered. 

        I stack three bricks one on top of the other after first getting the fire started with kindling a bit of waxed dryer lint and a few piece of egg carton. With damper fully open, the fire blazes and bricks are put in place. Damper is closed; I don’t have to top up for 6 hours or so. That’s quite impressive, actually. I load up the stove for the last time at midnight, adding an extra brick in case I sleep in or it’s really cold in the night and the wood burns up a bit faster. 

And so, winter 2023, bring it on. I’m ready! 

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 Carla MacInnis Rockwell

The ebb and flow of online relationships

Patricia Ernsberger, Mansfield, Ohio

According to Walter Elliot, a 19th century American priest, “perseverance is not a long race; it is many short races one after the other.”    

A life measured in terms of months or years due to a condition like cancer is much the same. Daily routines are disrupted, with all family members impacted by what the person with disability or disease is going through. 

I did it again. I had one of those “OMG, I’m old!” moments. Then I took a breath and reminded myself of those people, young and old who live with since birth disabilities like I do, who never came close to the number of years I’ve chalked up. I’ll be 70 next year! Imagine that. 

On 11 July, my little friend Eli James from Tennessee passed away. He lived with the most severe form of Spina Bifida and managed to squeeze a lot of purpose out of almost 13 years. He was a firecracker and won’t be forgotten by those who got to know him through a Facebook presence created by his Mom, Dawn. His service dog, Tobias, was a huge part of his life.

Death visited my online world again when, on Monday, 11 September, my friend, Patricia Ernsberger, from Mansfield, Ohio passed away due to stomach cancer that grew quickly. 

         Using the handle SilkyWay, in honour of a cat who liked only her, according to her grandson, Kody,  her death was a total shock and saddened our scrabble community. She was a vital part of the daily ‘doins’ and we could always count on her for all manner of ‘stuff of life’. Her family had expected at least a few more weeks. Alas, they were not given any more time with a woman with whom I interacted for years on a daily basis – all of it online. On a scrabble site. We were hooked! Oddest thing, though – we never played each other. Now, we never will.


 Over my many years of participation on the ‘information highway’, I’ve come across people from all over the world – people I’ll never meet in person but with whom I have a connection nonetheless. For over a decade, I’ve been part of an online scrabble community at a site called International Scrabble Club. Many of its members came from now defunct sites; I migrated from Internet Relay Chat’s #networdz channel. Lots of lively conversations each day with people, from the very young to the very old; young people still in grade school to men and women in university or trade school -- some taking their first degree, others on their second or third.                                                                                                     

Trish was thrilled to meet one of our fellow players in person, Hollie Packer, know in our scrabble world as luvs2scrab. We, in the scrabble channel, were equally thrilled for them. Sadly, Hollie passed away not long after, having struggled quietly with illness. For her, the scrabble tile flinging was a diversion from the slings and arrows of life.

Others in the group also had the opportunity and pleasure of meeting and greeting, sometimes one person meeting another, or a group getting together at a mutually agreed upon location; some met at scrabble tournaments.                  

The rituals we undertook for years became a staple for those of us who lived with challenges to mobility that impacted comfort, critical to moving around in the community. In some circles we’d be called lonely – we weren’t.  We had daily ‘people’ fixes though we never made coffee for them or shared a meal. Online relationships and connections are no less valuable than the ones we have in real life where we can see folks breathing and blinking.

Trish and I had one thing in common; we weren’t much for going out and about in our community, finding it more comfortable to stay home, in jammies with a cup of coffee, a few scrabble games or to watch a classic movie. We both were huge fans of British whodunits and got to enjoy all manner of excellent films via online streaming. Though sometimes a challenge, internet technology and all its quirks was something both of us wanted to learn more about.  Many folks in our chat room were trained in IT and always ready to offer instruction and advice. As well, I had my writing and Trish had her crafting. We stayed busy and engaged in things that were important to us.



I found myself often taking Trish into private chat to explain to her how to do this or that, or how to install and set up a program I thought she might like and find useful. She was ever the student and truly loved learning. Her limited out and about frustrated her emotional health, but she never let it get her down, not one to dwell on situations out of her control. I am convinced it’s the not stewing about things that we cannot change that makes our quality of life better and allows us to get up each day with a renewed sense of purpose. 



Trish’s life was one of perseverance. She kept going in spite of many challenges. I think that’s what drew me to her. Many in the world define themselves based on the stuff they’ve accumulated, convinced they couldn’t do without this or that and seemed not to believe folks who would say that their slow-paced life was enough. It is! Trish proved that it was.

Rest in peace, my friend.

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 mailto: Carla MacInnis Rockwell

Character building in the classroom

Photo: Luke Hendry/Postmedia

Coming out of COVID lock-down has forever changed the landscape with regard to how we conduct ourselves within the community; from how things now function within the school systems, within the workplace and in public gathering places. To ensure health and wellness of all, it’s vital that men, women, boys and girls embrace being a ‘WE’ people. Some of us are disadvantaged by circumstances beyond our control and sometimes need a hand up.

According to William Ellery Channing, a Rhode Island born Unitarian preacher, “the home is the chief school of human virtues.”

Not a day goes by that we don’t read or hear about some ‘wronged’ person, adult or child, going on a rampage, armed with assault weapons, randomly shooting moving targets who are running for their lives. Clearly, all is not well in their world for them to explode their rage in a hail of bullets.

Parenting children today is no easy task, with the push and pull of almost every facet of daily life contributing to elevated stress levels — children want what they want — NOW. Some parents tend to give in rather than have conversations about the value of patience and behaving in acceptable ways to ‘earn’ the object/toy of their desire. They need help.

I recall, many years ago, making my way through parenting a young school-age stepson, venturing into not totally uncharted territory as I was used to being around youngsters. He was not an easy child, a combination of temperament and circumstance, so I decided that a way to reach him would be through reading together. All manner of books became part of his childhood library. Among them Joy Berry’s series, Let’s Talk About, with each book focusing on a single topic and includes cartoon illustrations and relatable situations. Though designed for pre-schoolers, they were appropriate for my stepson given his situation. The Let’s Talk About books help children identify, understand and learn how to handle their new feelings. It was my hope that my stepson would adjust and grow into this new, blended family. Alas, that was not to be. His needs were far greater than my abilities to meet them. Now an adult, he still hasn’t fully found his feet.

That is why I am a strong advocate of early intervention for children with special needs, unique circumstances and different learning styles, with adults in their world who just don’t seem to get them. That being so, I also believe that virtues/moral values should to be taught in school. They need be taught in school.

In Ontario Catholic schools, as example, they have what is called graduation expectations. It’s not about advancing the doctrine of a particular religion; rather it’s about developing in students a skill set that readies them for their place in their community as full-time, ongoing contributors. Students must meet a specific set of goals/requirements in order to graduate; to me, it’s ideal in theory and in practice. In fact, we could use it in our schools — I’m sure parents and teachers would welcome it. Several of the goals include: an effective communicator; a reflective, creative and holistic thinker; a self-directed, responsible, lifelong learner; a collaborative contributor; a caring family member; and, a responsible citizen. Each goal has various individual components which guide behaviour and learning.

Children who are not getting enough constructive conversation in the home, for whatever reason, need access to it in school — the one place where they rely on other adults to help them when they need it. Success in life isn’t just about reading and writing, language arts and maths. One must have the basics of kindness, of caring and sharing, if they are to achieve favourable outcomes in other aspects of life.

I don’t think I’d be too far off the mark when I say that, if each school day, in each classroom started with “Good morning, how are you feeling this morning? John, you go first,” teachers would soon realize there is a need and they have an opportunity to fill it. Invite students to share but remind them that others need to have a turn. If there’s not enough time to get to everyone, invite them to stay after school for more conversation. Invite colleagues to participate and explore plans for making these discussions a part of daily interactions with students. Such exchanges could potentially save lives as they allow teachers to see who’s struggling with situations beyond what would be expected. Stabilize the feelings and the learning takes flight.

Character/morals education is not some outdated concept that has no place in school curriculum. It has a very important place in the education of our children if they are to succeed in life. Building character in children also involves including them in the community so that they come to know that what they have to say and how they feel is important.

Morals education is like growing a vegetable garden. The seeds are planted and watered and as ideas flourish and feelings mature, the weeds are pulled away. Imagine if students developed their own real-time gardens and watched them grow. Carrots and conversation go well together.

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 Carla MacInnis Rockwell

Doctors need to listen more to their patients

 

Photo/Unsplash

To coin one of my oft-used phrases — ‘we’re going to have a sharing moment!’

I live with spastic diplegic cerebral palsy. Years ago an episode of chest pain required that I go to the city hospital ER 40 minutes away. I’m not a ‘frequent flyer’ in the ER so  to make the decision to go was not without a lot of thought. Do I really, really need to? At the time my husband was still living, supporting my decision.

Earlier in the day, while at the mall, I was having difficulty wheeling my Quickie chair up a ramp which normally was not a problem given my powerful upper body. I worried because my heart was hurting. My family doctor at the time made house calls and while attending me at my home after the mall outing, put me on his portable heart monitor. He was concerned enough after the exam to insist that I go to the hospital immediately though there was no need for ambulance transport.

I went to the hospital ER, outlining symptoms in detail, noting that my family doctor felt that I experienced a mild ‘cardiac event’ based on his exam. I didn’t have a long wait, thankfully. Given my status as an ‘at risk’ patient, I also have a need to be really proactive when it comes to avoiding too much contact with germs -- colds and flu. For me, a simple cold could develop into pneumonia.                                                                           

The ER doctor arrived and I took note of the fact that I wasn’t invited to get out of my chair to lie on the exam table. As was my habit, I wheeled around the space, mentally photographing the environment - part of my modus operandi in the event that I did have to stand up and make my way to the table. I prefer to move under my own power as being ‘manhandled’ had potential to cause me to totter/balance shift; then I have to  ’re-balance’. A fall at my advanced age poses even greater risk, given I am a senior citizen with a since-birth brain insult but still uprightly mobile; quite an accomplishment! I wasn’t about to jeopardize my health and wellness any further by landing on my bum and possibly breaking or dislocating a limb. It’s important for clinical staff, whether nurse or doctor, to ASK if a patient with obvious mobility disorder who IS able to walk, would like or requires assistance.  To not ask and simply latch onto them without regard for their personal safety is inappropriate as their boundaries were not respected.

I also noted another ‘problem’ with the ER doctor’s protocols. She did not wash her hands. I had observed her munching on a slice of pizza just moments before she came to see me but said nothing. I was asked about the reason for my visit while the doctor, rarely making eye contact, looked at the chart. She then asked why I was in the wheelchair and was informed about the spastic diplegic cerebral palsy status. Much to my shock, she asked what CP is. Confidence in this physician went right out the window, barreling down the highway. 

The doctor put the chart down, bent over and leaned into me and with her thumb pushed on my stomach. There was no blood pressure taken, no temperature taken, no questions about chest/heart pain asked, no questions about what I ate that day. Red flag! Red flag! Red flag! Red flag! In just seconds, the diagnosis - indigestion. She wrote a script for Propulsid, and with that, the  examination had concluded.

For the record, I’ve never had indigestion in my life. I would be remiss, however, if I didn’t point out that in many patients, heartburn and indigestion can and do mimic symptoms of a heart attack so ALL avenues must be explored. 

I accepted the script and bid the doctor good day, wheeling away without a backward glance. There was NO WAY I’d be getting that script filled. Once at home, I researched the drug and was stunned to learn that it had potential to cause fatal arrhythmia. It was finally taken off the US market in 2000. I had a conversation with my father, a old-school country doctor, and within days was examined by a cardiac internist in Fredericton. More tests followed, and I was subsequently diagnosed with grade two aortic insufficiency; two pinhead sized holes in the valve.  Had I taken the drug as prescribed by that ER doc, I could have found myself in serious difficulty, compromising the ‘golden hour’ of care lost because my proximity to the hospital would have most assuredly worked against me.

Fast forward over two decades later, and I’m still ticking along, paying attention to my body; 70 next year, I take only one script drug. My ‘good medicine’ is working!

My point in sharing this story is to make people aware that they have a right to assert themselves. To all doctors who may be reading this column, attention must be paid not only to what YOU see and hear from the body you examine, but what the patient is telling you. Hearing and listening is vital to outcomes. Let those two critical skills be your gifts to your patients as you work to establish a rapport that grows into a trust driven relationship that is critical to patient health going forward. 

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 Carla MacInnis Rockwell

Where do retired mobility aids go?

Elijah William James and friend

When I was born in 1954, the diagnosis of spastic diplegic cerebral palsy came within the first year, by Alexander Torrie, an orthopaedic surgeon trained in Scotland and paediatrician, Barbara Robinson-Watson, both practicing at the former Victoria Public Hospital in Fredericton, NB. Dr. Robinson was the only woman in her class in 1947.

My parents weren’t long getting everything lined up to do battle with that thing that insulted my brain.

Over the course of my early years there was a parade of ugly brown boots into which equally ugly heavy metal braces with leather straps and knee pads were clipped. For a tiny girl, that added weight threw me off balance. I was exercised 4 times/day for 12 years, had knee surgery at age 8, and have the distinction of being the then Forest Hill Rehabilitation Center’s first child patient back in 1966. At that time, they treated stroke patients and a few with spinal cord injuries. No paediatrics. I was a trail blazer. The facility opened in 1958 with Stan Cassidy being one of its first champions. Years later, it went on to be named after him and with the passage of time, relocated to the current Dr. Everett Chalmers Hospital. My last stint as a pint-size summer patient was spent at Rosary Hall, being taxied back and forth by my favourite nun, Sister Monica Guest. Her sister, Marie, my family’s housekeeper when I was a child was a great friend to me; one of many who influenced my moving forward through a life that was marked by a ‘different’ ableness. Next year, I’ll mark 70 years of upright mobility. There will be cake!

It was during my last extensive therapy summer that I was freed from braces. Oh, what a relief it was. I still used crutches, of course, to ‘straighten and slow’ my wobbly gait. Face-planting on gravel would never be a good look.

I believe that my childhood experiences would have been enhanced with the limited/outside use of a wheelchair, to get from A to B a bit faster. ‘Walk this way’, was cumbersome and exhausting. Over the decades, my shoulders, elbows and wrists took a hit because it’s not ‘natural’ to have that constant hyper-extension. There were penalties paid for independent movement.

Times and technology changed how those ‘leg irons’ look. Today, moulded plastic orthotics make life so much easier for all those children who came after me. My first experience with them was when I was 28 years old when it was felt I should return to orthotics to correct a gait compromised by age and a wonkier spine. The joy never ends. Their use was short lived as I was lopsided, given only one foot required heavy metal correction and the other the slip in the shoe plastic orthotic. I think I got 6 months in, then called the whole thing off. I was an accident waiting to happen.

My young Facebook friend, Eli, who recently passed away, started wheelchair training at the Patricia Neal Rehab Center in Knoxville, TN, and at 2.5yrs old, the youngest child with whom they had use the microlite technology. According to his Mom, “he drove with only switches for quite a while, training for a year. The insurance denied the chair he needed so we did a fundraiser to pay for his first.”

Later, a more mature Eli got another set of wheels.

The struggle for families like Eli’s is real. The right equipment enhances quality of life, notably the learning experience of early education with peers. Being able to move around boosts emotional and physical development given that fitting in is fundamental to life experience. It’s amazing what appropriate mobility aids can do for a child who does not walk.

So, what becomes of orthotics and other supplies we no longer need but are in good shape? Lots of things aren’t custom made so could be used by anyone with a few minor tweaks. The ideal solution is to get the medical supplies that you no longer need to people who can use them because they are poor or have little or no access to medical care. Many organizations will take no-longer-needed, or even better, never used medical equipment and supplies from hospitals, doctors, and dentists but not all take donations from individuals. I gave orthotics to a donations scheme for impoverished countries. My wheelchair, after 28 years of service, was donated to the Red Cross for their program.

Should you have equipment to rehome, the best course it to advertise, with description and photographs, in local newspapers and grocery/shopping center message boards. Be clear on how you want folks to get in touch with you so that interactions go smoothly. If you use social media, that is an ideal place to connect with people who can benefit from what you have available. The opportunities are endless.

Locally, small donations can often go to nonprofits like homeless or women’s and men’s shelters, so please check with the agencies in your communities who may be able to pick-up or have convenient drop-off locations. Yes, homeless shelters can make use of things like crutches, canes and walkers, though space may prohibit keeping even one wheelchair on hand. Calling ahead to find out how what you have can benefit their clients is a way to reach out to ensure you’re networking in an expeditious way.

Knowledge is power.

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 mailto:carmacrockwell@xplornet.ca