From the Shores of the Ottawa River

I’m  sharing something very personal, a  challenging situation I have had most of my life, because I hope that both my struggles and my insights may be of use to you in your life, in some way. In fact, This by far, is the most vulnerable thing I’ve ever shared on a social media platform in the hopes that something about my journey will support you on yours.

For those of you who don’t know, I am a blog writer, podcaster, and the founder of a charitable foundation, seventhgift.ca I’ve held executive positions most of my career.

I had  poliomyelitis (polio) as a child, shortly after I started walking. I know that a lot of folks might not know much about polio because it’s been nearly eradicated over the last 65 years. But as a child  when I got hit with it, polio was one of the most feared diseases on the planet. You might even question, how I got polio when the polio vaccine was available before I was even born. I am Indigenous; and my parents lived in an Indigenous community.  Need I say more?

In those years, polio was killing thousands of children worldwide every summer and paralyzing tens of thousands more.  The numbers were in the millions.

We can celebrate that rates of polio have dropped phenomenally around the world since then. In recent years, there have been only a few hundred cases per year of polio in the entire world, mostly in 3rd world countries like Pakistan and Afghanistan.  

I have no memory of the incident except what I’ve been told. One day I was paralyzed, and I couldn’t walk. And after a while, the feeling and movement began slowly to return. But the process of regaining use of my legs was slow, and only after many surgeries I was able to walk again.   

In the 60’s and 70’s polio was treated by orthopedic doctors because there was little experience understanding that it affected the motor neurons in the spine.  I was fitted with long braces on both legs, but eventually only need a short brace on my left leg. 

When I entered adulthood, the prognosis was that I would never walk normally, or run due to weakness and discrepancy in my left leg.

After a partial stroke in 2018 I decided to update my brace.  it had been over 20 years since I had a new one.

My stroke doctor, who I respect, referred me to an orthopedic specialist, who refused to give me a prescription for the type of brace I had as a child, one which allowed my ankle to move as I walked. She said that with the weakness in my left leg this brace was not suitable for me. When I allerted my specialist, he said he couldn’t do anything about it. He replied to my email when I brought it to his attention saying:

“This Dr. is my department’s expert in this field and you have been seeing her. I’m not passing the buck, but should not this be going to her?” “

She told me clearly, I will not give you a prescription for the brace you want. What was I to do? I felt defeated.  Based on research and decades of experience dealing with my challenges, I was convinced that the current rigid brace she recommended would only create complications for me down the road, as I got older. My research showed that a movable ankle is necessary to lubricate joints in my leg, my knees, and my hips. We are not meant to be in a unmovable brace, it is not natural. In 2023 there must be braces that are supportive and yet allow for some natural movement.

I saw my GP, who fortunately understood what I was asking for and, he provided a prescription for a hybrid brace, a mix of a rigid and movable ankle.  The  process took me two years and now I have exactly the brace I wanted and needed (see the photo).   Indeed, I have captured some independence, I feel as though I’ve got my life back to some degree. I recently saw a professional who confirmed that my hip joints were stiff and not rotating in a natural way. I need to mitigate further damage in my hips, and I believe this brace in part is how to do that.

Developing Post-Polio Syndrome (PPS)

Poliovirus Then and Now

I developed post-polio syndrome, or (PPS) when I was 32, and to that point I had not heard the term despite living so many years with polio. You may never have heard of post-polio syndrome, either, and this is true of most physicians too.   A significant percentage of the people who got polio and survived, and particularly those who worked extra hard to achieve things despite having been stricken with the disease, have suffered later in their lives from this condition. To add to the complication of PPS, I suffered a partial stroke during surgery in 2018.   I have trouble walking; it is not clear how much is related to stroke or the PPS. 

The medical literature says  this about PPS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371137/

It affects between 25–40% of polio survivors. And unlike polio itself, PPS is not contagious. But PPS is serious. Parts of the body that regain movement after being paralyzed by the original polio can again become paralyzed.

https://www.mayoclinic.org/diseases-conditions/post-polio-syndrome/symptoms-causes/syc-20355669

Nearly all polio survivors who develop PPS do so within 15–40 years after their initial polio. When I first noticed symptoms, I was told it was age related and that everybody loses muscle strength. I was 32.

I’m doing the best I can with it, including getting as much exercise as I possibly can, which is a challenge when your legs don’t work well and you worry about falls.  I believe in doing all I can with what I’ve got. And, of course I’m doing everything I can that might help me to retain as much quality of life as possible, which is why I fought to get the brace I knew I needed to give me quality of life.

I’m listening, in every moment that I can, for what I can learn and what I can love on this journey. In fact, when I start to feel depressed or start to feel sorry for myself, I will often think about Viktor Frankl and what he endured, and yet he came out on the other side whole . Or I’ll recall some of the things I love. Not just the things I like — that just wouldn’t be enough to shift my energy. But the things and the people I truly love. Like music, reading, writing, and having a purposeful  life.

I’m going to be honest.   was not  all sunshine and roses, especially having to work hard against conventional “expert” medical thinking to get a brace I knew would make my life better. What I have learnt is no matter the challenges, one must look first to give meaning to it, and then move into action to improve their situation. As an Indigenous person I am carried on the backs of my ancestors.