Looking back at these pages, written 16 years ago about an event that happened 18 years ago, I am both aware of
my progress since then and reminded that some things will
I still have very little feeling on my right side. I'm used to it, and so are my children and friends: they don't apologize anymore for stepping on my foot or bumping my leg with a chair because they know I don't feel it. We laugh about it occasionally, but... there's no such thing as too much laughter.
I still use the cane. I sacrifice perfect locomotion in discarding it, and though using it slows me down and occupies my good hand, leaving the three-year-old attached to my right wrist to mangle and fumble and drop everything, my ability to balance is still spotty enough that I need it. I haven't had a really satisfying self-administered shampoo in the shower for years, because as soon as I get both arms up over my head, I teeter. I can climb up on a chair, but can't lift both hands above my head to change a lightbulb in a ceiling fixture. What are tall children and friends for?
And I do ride an 18-speed bicycle. Occasionally, an instruction doesn't get from brain to hands fast enough, and I run into a pole or whatever (no people or moving vehicles yet, knock on wood), but I wear a helmet and am usually laughing before I hit the ground, so it's okay. Bystanders think I'm nuts, but what else is new?
My stamina is still finite; I can push myself that little bit extra, still, but healing/rerouting is long since past, so all I achieve is exhaustion. I worked at home as a writer/editor for three years, and it suited me well because my time (for working, for getting up and stretching, for taking a walk) was my own. I also worked for a short time as a journalist at the Ottawa Sun. In October 2002, however, I succumbed to the siren song of full-time employment's salary and benefits, and started at the Department of National Defence as a writer/editor. So far, so good, though I am somewhat tired all the time and my blood pressure seems to be creeping up a bit.
I have had several TIAs. What deficits they have left
me with will no doubt be cumulative. When those deficits do become
apparent, I'm counting on family members to tell me, or co-workers
to lean into my cubicle and ask what needs asking ("Is that
a pyjama top?").
I still have short-term memory problems. My life is ruled by sticky notes, and printing on the back of my hand, and the beeping alarm of my electronic organizer. I'm used to it; it's my reality. Mind you, I lose my glasses every time I take them off, and forget why I've gone into the kitchen, but I watch my friends and realize that's muddle-age, not stroke.
My ability to concentrate, my perception of issues and situations, my reasoning abilities, my memory... all remain affected, but only in the time the processes take, not in terms of overall ability.
I still overload occasionally, but I control it. When I sense it coming on, I just tune out the world for a few seconds. My friends and co-workers understand, and if I'm among strangers, I can explain it. I haven't "shut down" in several years.
My emotions are still closer to the surface than my
former reserved self would have been comfortable with. In these
16 years since the stroke, I've cried and been angry and laughed
more than I did in the first 37 years of my life. And every tear
and snarl and guffaw has been very sweet, because I'm surrounded
now by people who are as "crazy" as I am.
I have a reasonably good, though not great, relationship with my children. We never talk about the stroke or the divorce – their choice, not mine. At 34 and 28, they treat me with not much more condescension and indifference than that
with which my friends' grown children treat them. They are healthy and happy, and that's all that matters to me.
I have read, watched videos, and talked with doctors and physiotherapists about brain injury, and realize there's more we don't know than we do know. I learn something new, still, every day, or read something and think, "That's why I did that", or, "I felt that way, too". Rehabilitation is a learning process for the mind as well as for the body and brain.
I've not forgotten the lessons I learned while I was in a wheelchair or using the cane full time. For disabled folks, those Life aids represent freedom. I never pity anyone using them, but I always accommodate them because we all hate having our freedoms restricted. I've learned to look beyond the wheelchair, the white cane, the emotional problems, and see the person.
I've learned courage is not the absence of fear, but the determination to act despite fear. Every day I see people whose realities are more unthinkable than were mine at my worst. They're facing those realities with dignity, grace, courage and humour. I admire them beyond words.
I've learned patience and kindness are the greatest gifts we'll ever give or receive. My mother, my grandmother, my Sunday School teachers told me this. My father always told me I learn things the hard way.
They were all right.
And I'm all right, too.
Mum died in July 2004. She had been slipping
away from us for about six months before her death, probably experiencing
TIAs (transient ischemic attacks – very small strokes with cumulative
effects) during that time. I miss her, although not constantly,
because we have lived some distance apart for many years and so neither of us has seen each other on a daily or even monthly basis for a long time. When
she pops into my mind, perhaps once a day, initially my thought
is of her alive – "Won't Mum get a kick out this when
I tell her", followed by the steamroller of realization.
About four weeks after her death, Dad had two seizures, apparently
caused by his grief and stress over Mum's death compounded, perhaps,
by the influences of scar tissue from his 1991 stroke. He was hospitalized
for almost three weeks, and was discharged to his home – alone,
to the endless worry of my sister and myself, but content in his
own place. His short-term memory was seriously compromised, but he covered
In late 2004, Dad had a stroke. He was hospitalized, and was
cared for by some of the staff and physiotherapists who cared for
me in 1991. He never recovered enough to go home, and was discharged to a long-term care facility. I would very much have liked him to
be in this end of the province, closer to me and to my sister, brother-in-law and
niece, but he wanted to remain where he was, where
he had lived for more than 40 years – fair enough.
My sister and I travelled at least twice a month to Barrie to visit him. Dad died in 2006.
Speaking of my sister... in fact, speaking to her – I've said this to you privately many times over the past couple of years, and here it is publicly: I can't imagine how much more terrible these recent years would have been had we not been together at every step. Your strength, your honesty and your sense of humour have kept me sane. Thank you. I love you.