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.
