Author Archives: Rita Kindl Myers

Rita Kindl Myers

About Rita Kindl Myers

Rita Kindl Myers was diagnosed with multiple sclerosis in 2001 and writes a blog entitled Where Will MS Take Me? She has a degree in English and completed a Masters in Anthropology at Memorial University of Newfoundland in 1999. She considers herself lucky to be a “bonus” mom to two beautiful step-daughters, while also giving birth to three babies, now adults. In the past, she has volunteered as a facilitator for workshops on managing chronic illness. These days, most of her time is devoted to managing her care and enjoying family and friends. Rita makes her home in Halifax, Nova Scotia.

Me and My Fancy Chair

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I depend on more than one piece of technology in my daily life. My wheelchair is the fanciest, most complicated, and most expensive piece of technology I own. I have a love-hate relationship with my wheelchair as it’s where I spend most of my time. I sit in my fancy chair for up to ten hours a day and it’s difficult to get me in the chair in a way that allows me to function easily. Being comfortable would be fantastic, but I know not to expect too much. I should be able to hold my head straight and move my right hand unhampered by the chair. My right hand functions the best; it’s the hand I rely on.

I have multiple sclerosis and the wheelchair enables my life. That’s the love. This chair, which was new to me in October 2019, offers many leg-positioning options that I didn’t have in my previous chair. (I would never go back to that previous chair. Oh, there’s the love showing again.)

It doesn’t work alone, however. My wheelchair will only help me lead a fulfilling life with the expert skill of my caretaker—a caretaker who experiments with different ways to place me in my chair, in the hopes of finding a better way, so I can make the most of my day. A caretaker who is also a good listener and problem-solver. With the help of my caretaker and another piece of technology, an overhead lift with its accompanying sling, I am placed in my chair in the morning and stay there throughout the day.

You have to imagine this morning routine: my wheelchair is parked alongside my bed. The sling is laid beneath me by my caretaker, who takes the six straps on both sides of the sling and attaches them to what I like to call “the death star” (mostly because it’s always getting in people’s way). It is in fact a battery operated lift that is lowered to my chest. The straps are expertly placed on hooks on either side of “the death star” so that it can lift me safely up out of bed and onto my chair. The lift slides impressively because of the ball bearings that move me from left to right, from the bed to the chair. I have to admire the smoothness of this ride. Do I enjoy it? Somewhat, it is safe. Do I like it? Not so much, because I do not physically participate. How the sling is placed beneath me relies completely on the experience and expertise of my caretaker. And how I land in the chair also relies on the carefulness of my caretaker.

art by Heather Huston showing a figure half-rising from bed

The Everyday Liminal by Heather Huston

Once I am in my chair, the sling below me, there are several shifts that have to take place to re-position me. It’s too complicated to describe in detail, but a small shift to the left will sit me in such a way that I am able to eat without choking and allows me to tap on the keyboard of my laptop and not fall further to the right in a slump that will become uncomfortable by the end of the day. The correct placement in my chair allows me to eat meals, open my laptop, watch Netflix, read and send emails, and write passages such as this one. On a good day, I will get to FaceTime my daughters, maybe share a laugh with my son. On a good day, I may enjoy a visit from a friend or walking the dog with my helper.

When daily living provides me with so many obstacles—things that tire me out—having a chair that can be adjusted with ease is extremely important. Any wheelchair needs to have ease of adjustment and this brings me to the hate side of my current chair: the design of its parts. How can adjusting a single part of a chair require so many different tools? This chair requires wrenches, Allen keys, and ratchets. Two different tools are required to raise or lower the armrest to a better position.

For example, with the flick of a switch located just beside the seat of my chair, the armrest can be pulled out of its position and only with difficulty placed back securely. It is in fact easier to pull the armrest out than re-position it. This is a safety flaw; the opposite of a safety feature.

Let’s talk design some more. The head rest is secured to the back of the chair with a bolt. A wrench is required to loosen or tighten it. But the bolt at the base of the head rest is hidden behind a touchscreen. This is a secondary touchscreen meant to allow my caretaker to tilt, elevate, or turn the chair right or left. We don’t use this feature (fortunately I can use the controls myself). But I’ve become frustrated when we have to tighten the base of the head rest and it’s hidden behind this touchscreen. The second screen is simply bulk that is more annoying than useful.

In effect, what I’m asking for is a chair that allows me to move enough to get my daily activities done, while I’m also being physically supported, so I don’t tire myself out. On the 50th anniversary of the moon landing, as I was bumped and scuttled throughout the day and required a re-positioning in my chair, I joked that if NASA built me a chair, it would be the best chair possible. And that is my secret, playful wish: for NASA to build me a wheelchair.

 

In a Rita-Perfect World

As uncomplicated as silent companionship
when we listen
To simple playful magic
and the air…

When we listen
to a whale’s blow hole.
and the air escaping
reminds me of

a whale’s blow hole.
Bumped and scuttled between boats
and reminding me of swimming
between fishing lines.

Bumped and scuttled between boats,
submerged in the Saint Lawrence Seaway
between fishing lines,
the world sounds garbled.

Submerged in the Saint Lawrence Seaway,
when we take care of each other,
the world sounds garbled
then something new wants to be born.

When we take care of each other,
and remember to play,
something new wants to be born,
then laughter becomes the shower for the soul.

Remember to play,
when there are no more right whale deaths.
then laughter becomes the shower for the soul.
In a Rita-Perfect World;

when there are no more right whale deaths.
NASA will build me a wheelchair
as uncomplicated as silent companionship.

Just Jen by Jen Powley

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In Just Jen: Thriving through Multiple Sclerosis (Roseway, 2017), a book less than two hundred pages long, Jen Powley takes us on a trip that we wouldn’t otherwise experience. This is exactly what I want from a book: the opportunity to go on an unfamiliar journey.

I say this even though I was diagnosed with multiple sclerosis sixteen years ago. But everyone’s journey with MS is different. Jen shows us the hard realities of MS with an easy, straightforward honesty and a great sense of humour. Along the way, we get to know this extraordinary woman as she wakes readers to the depth of relationships bound by this disease. Continue reading

Supper Helper

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“Who wants to be supper helper?” I call out, beckoning one of my three teenage kids from behind their closed bedroom doors. I am sitting in my wheelchair and aiming my voice down an empty hallway. It’s time for them to choose between setting the table and preparing supper, or cleaning up afterwards.

I admit the phrase “supper helper” is now a misnomer. I coined it years ago, when the kids were young. Back then, I cooked our evening meal and it was their job to set the table. Eventually though, as I’d started to prepare supper, I’d realize I was too tired to finish. I would chop the onions, sauté with garlic and halfway through cooking, call in one of my kids as supper helper. Soon, they were also putting on rice to boil and creating salad. And when I could no longer handle cutting a round onion with a sharp knife, being supper helper meant learning to cook.

Tonight we’re having the turkey soup my daughter made yesterday. She sets out four bowls — one for herself, the second for her brother, another for her sister, and one for me.

“Let’s put some vegetables on the table, too,” I call out.

At that moment, I’m transported to the dinner tables of my childhood. For the first eight years of my life, my grandmother prepared supper, allowing my mother to work outside the home. My father and grandfather seated themselves at the table just before my mother served the evening meal. We began by bowing our heads as we made the sign of the cross and shared a short prayer. What followed was praise for my grandmother’s cooking — mixed with giggles between siblings. Supper ended with a nod to the authority of my parents, who dismissed us from the table. Afterwards, the four children cleared off and washed the dishes, and the dog ate the leftovers. Those childhood suppers were structured events and there were expectations: the rest of the world was put aside for the duration of the meal and children had good manners.

Authority is not a hallmark of my parenting, yet I still find myself wanting to re-create those meals of my past. Tonight, as I say, “Let’s put vegetables on the table,” I am reminded of a priest standing behind an alter, raising the Communion Host for the Blessing: “Let us pray.” Let us put vegetables on the table. Supper can be a ritual, one which I still enjoy. At this point in my journey with multiple sclerosis, however, I have to remind myself that my physical inability to cook and serve food does not take away from the mental capacity needed to ensure everything comes together.

“Yeah, well, what do you want?”

My daughter stands at the fridge, the door open for an annoyingly long time, hand on hip, face cocked to the side. Vegetables suddenly sound superfluous and she sounds rude. But I’m not fooled: she’s super smart, better at math than I am, and with a competitive streak, she manages to be one of the top students in her class. For now I’ll ignore my mother’s “shoulds” and will not be bothered by the tone of my daughter’s voice.

Besides, the soup she made last night was delicious and I enjoyed watching her cook. She moved around the kitchen efficiently, chopping an onion, sautéing the garlic. She added potatoes for their starch and carrots because they are sweet. She pulled the meat off the turkey carcass in a way that would make her great-grandmother proud.

“I want,” I respond, “to serve you a salad.”

I point out that we have cherry tomatoes and the washed lettuce is stored in Tupperware. (Sometimes I can do such things myself; other times I make sure the vegetables are washed, chopped, and stored by the students I hire for extra help.) But I still have to get my daughter to put the salad on the table and tonight she’s a teenager who just doesn’t want to. I’m a tired mother who is grateful for anything done, but it has become too difficult for me to prepare a bowl of soup and salad and then to eat it. Asking my kids to help with chores is okay. Asking them to take care of me doesn’t feel okay at all. They’re too young to be concerned with my welfare. I want to be concerned with theirs.

How can I look after them? I can be creative. I can adapt. I can call in help. I can teach my kids the skills they will use later in life: the importance of family meals, how to make turkey soup from scratch. But little by little, this chronic illness is taking away my physical abilities. It is a sadness that seems to hold our family quietly.

At the supper table, my son serves me the soup, while his sister chastises him for spilling it on the table. I cannot really know what sadness or frustration may have touched these mysterious, beautiful teenagers today. So I will ask if they want to hear the funny story I heard on the radio and they will respond, “Sure, just don’t ruin the story by laughing halfway through it.” I will protest because it is a good story. Listening for my grandmother’s voice reminding me to be thankful, I can share the company of these kids over our meal.

Wooden Spoons by Jennifer Raven

Wooden Spoons by Jennifer Raven