Where do I Roll From Here?

Over the past three articles, I talked about being born with Nemaline Myopathy and the doctors telling my parents I would only survive a year. A year would turn into living at the Children’s Hospital of Eastern Ontario.

When I turned seventeen years old, upper management approached my mom and me about transferring me to a long-term care facility or a group home.

I chose to live on my own in an apartment. For the next two years, my mom, my caregiver, Peter, and I wrote letters to all three levels of government.

On March 16th, 1994, I moved into my apartment.

My first fifteen years of independence were a blur filled with fun, fast and hard living, and not always knowing what I was doing.

In the last of my four-part series this week, I’ll discuss the previous fifteen years of living independently—which have often been challenging and turbulent—the present and the future.

For starters, I’ve had several partners, and at least one of them was abusive. I don’t often talk about it, but mentioning it here and there is important. Abuse does happen to men but is rarely talked about.

Besides that, with each passing year, I have increasing difficulty in finding caregivers to help me with the things that I need help with, both medical and personal. And when I find someone, they rarely stick around for long.

The most common reason is that I’m ventilator-dependent, which is often seen as intimidating. A second common reason is that each shift is one-on-one and AT LEAST eight hours long. I say at least eight hours because, at any given time, the following staff member could call in sick, and right now, I have two people as backup.

If nobody is available, my only option is to go to the ER, which happened in January of 2023. I spent a full twenty-four hours in the ER just because none of my caregivers were available. The whole situation was traumatic and upsetting, which continues to affect my mental health even as I write this.

Again, it’s a topic that needs to be brought up more often by those who rely on caregivers. I’m tired of hearing from “healthcare professionals or experts.” I want to read and hear from people experiencing a caregiver shortage and how it affects them.

Ontario’s healthcare system has deteriorated dramatically over the past fifteen years. As a result, others like myself have ended up in hospital emergency rooms or forced to live in a nursing home, at times, far away from family and loved ones.

That is terrifying and unacceptable. I often think about what would happen if I ever reached the point where I could no longer live independently.

The crazier part is that living in a group home or a long-term care facility is more expensive for the government than living independently.

Anyways, excuse me for ranting. Besides those negative aspects, I’ve experienced many positive things over the past fifteen years. Highlights include:

– Becoming more involved in the community, especially when raising awareness about mental health, wheelchair accessibility, and ongoing concerns with Para Transpo.

– Running for Mayor of Ottawa in 2018,

– In 2019, I started writing for Centretown Buzz, which led me to write a weekly column with Ottawa Life Magazine.

– Rediscovering practising mindfulness and meditation.

– Learning to surround myself with people and things that bring me joy.

– Being able to manage my mental health as best as I can.

– Changing my living space to suit my needs and vibe better.

– Learning the fine art of scheduling for my private caregivers. (Adulting)

– Trying not to lose my mind when I feel overwhelmed. (But aren’t we all?)

As far as the future goes, right now, I’m still in the process of getting a new wheelchair and waiting to see if I will be able to get direct funding. Direct funding would allow me to hire my own caregivers, pay them directly, and do everything I need to do to live independently—what I do now, but it’d be on a 24/7 basis.

At some point, I would like to get a wheelchair-accessible van and explore small towns in Ontario, perhaps across Canada and abroad. A part of me also wants to leave Ottawa and start over somewhere new. I feel like I’ve done everything I can here.

Even though I’m almost fifty, I still have much to learn and experience.

I will do my best to continue to make it possible.

In closing, I want to thank those who have supported me. I wouldn’t be here without you.

Thank you.

Until next week, stay safe and keep on rolling.

Photo: Silvia Trigo, Pexels