Stroke and Sickle Cell Disease: One Person’s Story
Some people with Sickle Cell Disease may be at increased risk of experiencing stroke – which is when blood flow to the brain is blocked or there is bleeding in the brain. Stroke is life-threatening and scary. While stroke can result in many changes to one’s life, people can lead new and meaningful lives after stroke. This article describes the journey of one person with Sickle Cell Disease who experienced stroke.
In Canada, we live in a fast-moving world. Millions of people, each with two stories. One that they share with the world we confront each day and one only maybe our close friends, family, and caregivers understand.
One story is that of invisible illness – where sometimes the hardest part of life is understanding where you fit into a world that functions well. Also, the current global pandemic has forced many of us to change every part of our lives. Our entire society, with different abilities and without.
Ten years ago, long before the pandemic, I experienced a stroke –a brain injury. And I developed it outside of my home province of Ontario. I had what is described as a secondary brain injury, not caused by physical injury or trauma, but by medication I had received. This created startling challenges because I had a series of strokes, causing temporary loss of all language and mobility.
I went from a few weeks in the ICU, two months of hospitalization and in-patient rehabilitation, to many more months at an outpatient rehabilitation centre. I had an amazing care team throughout, including doctors, nurses, neurologists, physiotherapists, speech language pathologists, occupational therapists, nutritionists, as well as transitional life coaches for persons with disabilities. I went from a stretcher to a hospital bed, to a wheelchair, to a cane and finally, on to my feet again. I was told that my recovery had only happened because of my age at that time.
The most alarming aspect of a brain injury that I have learned is that healing takes time more than anything else. You cannot force a brain to heal. You cannot force a brain to behave as it once did. Forming new pathways to send your body information for speech and mobility is one of the remarkable things that a human brain is capable of. I can only stress how grateful I was for the people that were taking care of me.
The extreme changes in my mood, including memory gaps, lasted for about 5 years, with friends and family trying to figure out where I had gone. I can look back on that time and see how sad it made everyone in my world. Realizing the effect your setback is having on everyone around you was incredibly frustrating as it was happening and even now as time has passed. Of course, back then, I was still struggling to find words and dates through a clutter of disordered thoughts, as the past was slowly coming back.
Unfortunately for me, the French I had learned while growing up in Ontario schools was now a jumble in my head. Even after a series of new French classes I took after the illness in Montreal. Because of this, it was necessary for me to return to Ontario. So, I decided to start over with the English I was finally able to use again.
Life in the part of Ontario where I live has a sometimes-frenzied pace that only seemed to increase upon my return. A new way to live among family was my first task. When I returned in 2014, I was aided by non-profit support for those who have suffered acquired brain injuries. This helped with my feelings of isolation, though could not assist me with understanding why I could not go back into the field of work that I had left. Non-profit communications – the area where I previously worked – was something I was advised that I could not go back to.
Since then, I have spent a few years in college obtaining practical skills that I had not learned before. In addition to years of gaining new hobbies and reclaiming old passions from my youth, I have had temporary work and have kept myself busy with friends, family, and volunteer opportunities, which are now virtual.
Today, I know that my growth and development as a person have been the greatest rewards of my illness. Everyday, I have a greater understanding of why it is so important to approach the outside world with kindness, respect, and compassion. To treat every situation as an opportunity for further understanding. To love every sunrise and sunset. This was always who I was, but there were many years of trying to remember how I had become that way.
To those in search of community and new friends, or for those struggling with an acquired brain injury, including stroke, I would like to highly recommend seeking out a community organization through local brain injury services and societies
This Blog Post was originally published on the Disability Channel.
Learn More
After Stroke: A personalized stroke recovery program that helps survivors and their families navigate the path forward after a stroke.
Toronto Acquired Brain Injury Network: Connects people with Acquired Brain Injury (ABI) to the services they need in the Greater Toronto Area
Mind Forward: Provides community-based rehabilitation and life-long support for adults whose lives have been touched by acquired brain injury in the Regions of Peel, Halton, and Dufferin
Brain Injury Society of Toronto: A non-profit supporting those living with the effects of acquired brain injury in Toronto.
Brain Injury Association of Peel and Halton: A non-profit organization which advocates for the needs and provides information to survivors of Acquired Brain Injuries, their families and support network in the Regions of Peel and Halton
About the Author
Earleen is in her mid-40s. She has a BA in Mass Communications and Political Science and a Certificate in Radio Broadcasting. In her spare time, she enjoys music, family, friends and volunteering in her area of the GTA.
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