In this blog post, Jose shares what it is like to live with an invisible disability and a progressive condition. In addition to being a proponent for better rehabilitation options for those who are recovering from a brain injury, Jose advocates for advance requests for MAID. He wants improvements to the system to help people live life to the fullest; he also wants the option to pre-plan for end-of-life. 

Content warning: The topic of suicide is mentioned in this piece. 

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2017 and 2019 saw a few long nights of the soul.  

In February 2017, I was stepping out of the shower and collapsed on the floor. Not knowing I was experiencing a hemorrhagic stroke, I floundered into unconsciousness. During the ambulance ride, while the paramedics were working to ascertain lucidity, I discovered the survival rate for blowing a blood line in the brain is 26.7%*. Had I beat odds?   

What do you think the odds would be of surviving a second, more powerful, more damaging stroke? For blowing a second blood line deep in the brain, the survival odds are less than 3%. In May 2019, it seems I did just that, I beat the odds, but at what cost?    

I had not fully recovered from the first stroke, but I pushed myself back to work and back to life. In reality, I was running scared, all too aware of being mortal, and being temporary. The result of the strokes was a compound traumatic brain injury (TBI). I wondered, “How much more messed up am I? Am I fortunate to be alive?” Laying like a sack of potatoes on a gurney, fortunate was the furthest from what I felt. “Hey Paramedic, how much medication you got there?” I won’t lie, suicide crossed my mind.  

I had to get a grip on myself to realize the gift before me. I started with being alive, cognizant, lucid, conversing, swallowing, focusing on what works, the good, the others in my life. It was a mental game with a twice damaged brain, think about it.  

The list of what was potentially lost was long: being fully mobile, hiking the Atlantic Archipelagos, downhill mountain biking, open water swimming. If there was a way to regain full mobility, it must be found. And not just for me, imagine all those that have or will experience a TBI or an acquired brain injury (ABI).  

I’ve been told these ambitions are not possible, and that humans are just not capable of committing to change as I believe we are. The ones saying that are not in a binary situation like myself. To keep living, purpose is required, if we have no purpose or no hope, what is the point of merely being alive? Give someone reasonable hope and purpose and watch what happens.  

Parkwood Institute is a well-recognized Brain Trauma Rehabilitation Centre, dedicated to Spinal Cord Injuries through TBI’s located in London, Ontario, Canada. And I have been through the program twice! The second time was more intensive.   

During rehabilitation at Parkwood, I had many poignant conversations with the other patients. I listened to their stories, their loss, and their pain; many not knowing how they were going to continue to live. Some decided it was best not to. These talks tore me open, ripped at my heart.   

People who live with an ABI or a TBI often feel invisible, this is due to stigma, isolation, and social dogma. My purpose grew from the questions, “What about the ones that have no voice, literally?” “What about my brother, my sister in Brain Trauma?” “How can this be allowed to continue with strokes on the rise and with the average age getting younger?”*  

There is a daily struggle for those who look alright physically but have lost the neurological link to their bodies. I had many serious heart-to-heart moments with others struggling with the emotional roller coaster of recovery. Staring into the abyss is one thing, doing it while not recognizing that it is the abyss, as with all denial, has proven suicidal.   

Tempus fugit.   

Before anyone reaches full RE-Habilitation, the funding envelope available for their particular deficit is calculated, using metrics and, our friend in averages, the bell curve. This assumes that we are all the same. Four, eight, ten, twelve weeks, ready or not, discharged you go!   

The fact that we live in a country with global access to such facilities is truly a blessing, I have nothing but gratitude for the people, the place, all of it. Paradoxically, the present funding mechanisms negate the full benefit being realized. The question I began to ask was, “What could be done to create a more funding efficient paradigm?” The answer I came to was to create a parallel supportive habilitation system to leverage and amplify what is in place. So I began the work on creating such a habilitation platform. I tell you this, so you understand how much my desire to participate and contribute to life is.  

One haunting question I had about my situation was, “Why? Why experience two similar strokes in both hemispheres; was it a million mile an hour lifestyle, love of the adrenalin?” I came later to discover that the second strokes’ main cause was a misdiagnosis, which led to mis-medication and a few other misses. In early 2020, a research doctor at SPARC had a hunch, and followed it to Hyper-Aldosteronism. Finally, a diagnosis and a manageable condition. Better than three strokes and you’re out, right?  

My motivation came from purpose, and I decided to grind it out, while, knowing from experience, not all have the same level of commitment or persistence. Listening to the other patients, it became clear, not all unfortunates are as fortunate as I.  

Fast forward to late August 2021, I was sitting down on the sofa when an all too familiar sensation overcame me; a sensation I would pay anything not to know. It went through me over the course of an hour, just like the other strokes, only this time I could wiggle fingers and toes. My balance and mobility were once again affected and after doing the specialists rounds – you know all the ‘ologists’ – it turns out mini strokes, like aftershocks, are possible regardless of a management strategy.   

In other words, this condition is progressive in its own way. Being the proactive type, I considered the worst-case scenario, and in my mind, the next logical step was end-of-life planning. Everyone should write their end-of-life directives but particularly me with a progressive condition. In Canada, we have medical assistance in dying (MAID), however this progressive legislation provides no access to advance requests for MAID. The Netherlands, with the right paperwork, has pre-planned end-of-life strategies. But I’m not Dutch, now am I?  

We live in Canada – our forward-thinking home and native land – where we did away with the death sentence but continue to sentence people like myself to a potential life in isolation, pain and suffering. Quality of life is subjective, but we need options that give Canadians peace of mind knowing they can plan for end-of-life. I want to know that if my condition worsens, if I am suffering unbearably, and meet the criteria for MAID, that I can record my wishes in an Advance Directive. We are fortunate to have access to MAID in Canada; however, we need the legislation to include the right to pre-plan and write an advance request. Please write to your local politician, petition them, call them – your voice is the most powerful change-making tool.  

Resources*  

Hemorrhagic Stroke: Survival Rate, Life Expectancy & Recovery  

Risk factors impact on the long-term survival after hemorrhagic stroke  

Hemorrhagic Stroke: Intracerebral Hemorrhage 

https://www.cdc.gov/TraumaticBrainInjury/index.html

https://www.cdc.gov/stroke/facts_stroke.htm

https://ala.ca/resource/tip-sheets/acquired-brain-injury-traumatic-brain-injury