100 Days

My Stroke

Racing heart, vertigo, surging pain and bursts of flashing, purple light. My daughter, frantic expression, repeating my name. Up to 15% of strokes occur under the age of 45, and at age 45, I became an unwilling statistic. The experience of stroke I could describe as only a those spinning tea-cup rides at local fairs that I just couldn’t get off. The road to recovery has been one of determination, grit and tears.

A stroke is a cerebrovascular accident, that is caused by either a blockage in an artery (infarct) that disrupts blood flow to the brain’s arteries or bleed in the blood vessel (hemorrhage) results in increased pressure in the brain. Both result in immediate brain tissue death as the oxygen supply is severed and can have variable consequences depending on the severity of the blockage. This can impact the nerves that control all aspects of the body such as breathing, swallowing, walking, talking, emotional regulation and memory. Short of it is that my medication regimen had failed me because I was using the wrong pill dispenser.

100 days

A long winter, preparation for a marathon. The first 100 days, after a stroke are considered the most critical for the brain to recreate the neural pathways that were damaged to make the most overall functional improvements that can be achieved.

It was a cold August morning in 2020, and I was visiting my daughter and grandson. I can remember the smell of the banana muffins my daughter was baking and the sound of my grandson Billy imitating planes and trucks as his lego pieces flung across the living room. There was a sudden sensation of surging pain in my right temple, these flashes of purple spots, and a stark nerve pain shooting down my right arm. I remember looking at my daughter and trying to find the words but all I could make were sounds. Then it became like an out-of-body roller coaster experience that I couldn’t get off. Flashing lights, ambulance. Presentation to the emergency departments where I was put on show, with doctors and nurses flashing lights in my eyes, lifting my arms in the air, asking me where I was, rushing me to a dark room where a machine made loud beeping noises. It felt like I was witnessing this situation unfolding from a distance instead of in my own body and could understand everything that was happening around me but I couldn’t break the bubble that felt like them and me. Turned out that would be the beginning of the rollercoaster I couldn’t get off.

Hospital

Thankfully, with the incredible timely work of the medical professionals, my brain scan showed that I had an infarct in my left superior frontal gyrus, or commonly referred to as a L) MCA, and given that I presented within the timeframe for intervention, I was immediately transferred to another hospital under the neurosurgical unit and underwent what was called ECR – endovascular clot retrieval. This is a revolutionary technique where an incision was made in my groin, and the clot is captured by wires that pass through the arteries of the body.

Recovery

What followed was a week of searing headaches, dizziness and ongoing purple spots. Within twenty fours I had been seen by the Allied Health therapists like the physiotherapist, occupational therapist and speech pathologist to assess my mobility, swallowing, talking, thinking, arm movement and problem solving. As my stroke occurred on the left side, the opposite side of your body is impacted. The days were chaotic and frustratingly empty, and I experienced regular outbursts of frustration because my right arm was like dead weight, the words were coming out all muddled, I would lose concentration quickly and the physiotherapists kept telling me I was too weak to walk on my own, and still needed this machine that a physiotherapist and nurse would put me on called a Sara Steady to even sit in the armchair. I didn’t even recognize the person I was, I prided myself on being a positive and patient person before my stroke, but the energy had been zapped out of me and I just wanted to scream.

The one thing that kept me going was my family. I couldn’t quite the words out, but with the speech pathologist, I remember drawing a woman in a dress and writing ‘Sa’ for my daughter Sarah, they quickly put two and two together that my family had a wedding that I refused to entertain that I wouldn’t be at, I had thought of this moment holding her in my arms as a newborn. I had 96 days.

Five days later I entered the rehabilitation unit being pushed in by the transport people, and six weeks later I left on my own two feet. Each morning I looked at the photo of my daughter and grandson at my bedside, and that was the motivation I needed to get up and remain positive as my days were filled with physical pain and exhaustion with the physiotherapist, and the insidious mental frustration with the speech pathologist working on improving how easily the words came out. It was hard road full of desperation and grief over the loss of the person I was and the future I had envisaged. Being inspired by the medical professionals I spent each day with that I realised that I could still lead that life with a different spin or choose to feel sorry for myself. And I have decided to upgrade by pill dispenser to SimpleDose

A Happy Ending

My daughter’s wedding occurred exactly 96 days after my stroke, of course with a slight limp in my right leg due to the increased muscle spasticity – couldn’t forget I had the stroke right! The pride I felt walking her down the aisle was immeasurable, as well saving a little bit of pride in the progress I made to regain my independence and quality of life. My road to recovery continues with regular weekly rehabilitation with my physiotherapist and speech pathologist. My life will never be the same, but through a challenging experience I have learnt that your health is truly the most important thing to live life to the fullest.