The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our Stroke Survivor Stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk
Where were you when you had your stroke?
Where were you when you had your stroke?
The initial mini strokes happened at my home in Nanoose Bay, British Columbia. I had my stroke on November 19, 2012, a day, as a stroke survivor, you never forget and your family never forgets. So many people are affected
Could you access hospital?
I had what the emergency doctor referred to as a stuttering stroke. I think what he meant by this is that I had a series of smaller strokes at home before the bigger stroke hit. After the major event, which happened in the waiting room of emergency or I wouldn't be here today, I wasn’t having thoughts that registered. I inhabited a place I can only describe as ‘limbo’.
What expectations did you have for your treatment, rehabilitation, therapy and recovery?
I was in denial from the onset, an all too common response to the symptoms of stroke. My right side was paralyzed. This was frightening. Initially my speech was impaired but this righted itself fairly quickly. With a little effort, people could understand me after a few days. Perhaps the biggest problem was that I didn’t feel like I belonged to the world anymore even though I felt my cognitive powers were still intact. The combination of loss of physical and emotional control and the sense of no longer belonging to the everyday world resulted in severe depression. After a couple of weeks I decided I could either wallow in self-pity or take action. In combination with physical therapy I decided to meditate. I also decided, very deliberately, that I needed to take a positive and proactive approach to my recovery. I have never stopped therapy. I have read as much as possible by other stroke survivors and a number of books on the brain, brain plasticity and new forms of therapy. I also used memory to find my way back to myself, to the person I had been. Patience is vital to the stroke survivor’s well-being because recovery can be very slow.
What was your experience of treatment and/or rehabilitation and therapy?
I have two complaints: My formal therapy was terminated far too early; and all forms of therapy need to be tailored to the individual; that is, personalized. The patient needs to be consulted if therapy is to be effective. Too many assumptions are made about what will work. Anecdotal accounts can be every bit as reliable and as useful as clinical research if collected properly.
What has helped you in your recovery?
Before my stroke I taught English and Creative Writing at the university level; I owned a publishing company; and I wrote and published books. I was lucky, writing was my life and was a vocation to which I could return with relative ease. Eight months after my stroke I decided to write about my stroke experience. My only handicap was that I had lost the use of my right arm and hand. I typed my book, The Defiant Mind: Living Inside a Stroke, over 300 pages, with the index finger on my left hand. The Defiant Mind is a book about the wonder that is the human brain, both before it has been damaged and after. I hoped the book would be useful to other stroke survivors, care-givers and therapists. I also hoped it would help the general public understand what a stroke is, at least from my perspective. But if my book doesn’t achieve these goals at least it will have been another form of therapy for me; another way to explore my own experience. Writing also puts my brain to work, which seems essential to my recovery. I also take walks, cane assisted, amongst trees, practicing Japanese 'forest bathing' or Shin-rin Yoku. Scientific studies indicate that trees help reduce the stress hormone, cortisol, and increase the immune defence system. And at least three to four times a week I go to a local pool. I can exercise in water with abandon. I love the water’s primal feel and wish it had been a part of my therapy from the beginning.
What have been/are your fears?
Of course, always at the back of my mind is the fear of having another stroke, a risk for which I'm genetically predisposed. But I tuck this away and carry on.
How did your family and friends feel and respond?
I've been very fortunate; my family and friends have been incredibly supportive and loving.
