Before the bleed, we had arranged to rent a cabin at a beach for a week. We decided to go ahead with our plans: we'd be staying put for the whole week, so I felt I could handle it, and if I couldn't, we'd be only about 50 km from home.
I was still hesitant about trying things, still over-worried about hurting myself. I quickly discovered I couldn't sleep on the double-in-name-only pull-out bed in the cabin because I'd get my arm caught in the side of the metal frame or under my husband, depending on which side I slept, and so we moved to a motel nearby. I would set out with my family for a walk, and push myself to the point whereby I'd be exhausted and have to return for a rest. I couldn't return alone, so everyone had to. I know I was far more of a burden than a pleasure to my family, but I had a wonderful time.
And when I got two holes-in-one on the mini-golf course, well, on a scale of meaningful accomplishments it would rank pretty low, but it felt very good. We took a cruise, visited historical sites, walked on the beach, dropped a bundle in the video arcade, and I relaxed. I resolved to stay relaxed when we returned home, to ease up on myself and enjoy life.
That resolve lasted about a month, after which I was as overloaded and fearful as ever.
Every physical manifestation of a brain injury should serve as a reminder to family and friends that the injured person experiences just as many emotional and intellectual manifestations. Unfortunately, that's often not the case.
I could do some laundry, a bit of shopping. I could make supper if I started right after lunch. I even took a swipe or two at the garden. I was all better, right? Wrong. Oh, so wrong.
I had always been a reserved person, for the most
part. After the bleed, my emotions were very close to the surface
all the time. People would say how lovely it was to see me laugh
so readily, take such obvious and immediate delight in the world.
That was lovely for me to hear. It was saddening beyond belief to
hear those same people tell me I was over-reacting or out of control
when I cried or got angry as easily.
Through the months after the bleed, only my mother read books, talked to doctors, tried to understand what was, or wasn't, going on in my mind. My father didn't make such an obvious attempt to understand; by the same token, he accepted without judging, which was as good. My own doctor was remarkably unforthcoming; the visiting physiotherapist was too pressed for time to answer any but the most basic of questions. My friends, but one, were too squeamish, my husband too busy, my children too young. I was not well enough to understand my own actions or feelings, let alone explain them.
Our stomachs and intestines process nourishment, period.
Our lungs process breathables, period. Our eyes see, period. One
organ, one task. Our brains are the only organs which perform two
distinct and vastly different tasks simultaneously. The brain is
the control room of the body, and it houses the mind... the intellect
and the emotions. When someone breaks a leg, we don't expect her to walk on it until it has healed. When someone has diabetes,
we understand his need for restricted diet and insulin. Societally,
we are, finally, tolerant of injury and disease and of the time
it takes for those problems to heal. We can see the problem, touch
it, hear it, whatever, and so we understand or at least accept
After my brain injury, everyone understood and accepted my physical limitations. Only my mum even attempted to understand the intellectual and emotional manifestations. As a result, she (and my dad) were the two people close to me who did not think I was crazy... at least, no crazier than I'd been before.
The months after the stroke were hardest on my children. They only somewhat understood what had happened to me physically; they in no way understood the emotional and intellectual "injuries" I was dealing with. That lack of understanding wasn't their fault; they had no one who would and/or could explain it to them.
They would come home from school and in five minutes rattle off the 17 things that had happened that day. I would overload almost instantly, especially with my daughter, who espoused that machine-gun method of conversation so common in teenagers. I couldn't remember teachers' names, or who taught what when. I couldn't remember appointments, projects, tests. I couldn't remember what they'd told me five minutes before. And because I tried especially hard with them, because I knew I wasn't succeeding, I was upset all the time and overloaded that much more easily. They didn't understand and I was in no shape to explain. They grew more confused and hurt and, eventually, resentful, as time passed. I could see it happening, but I couldn't do anything about it. This, above all else, I regret.
We visited my sister, brother-in-law and niece. The visit was wonderful. My new niece (an only child now that my double vision had come to an end) was still adorable. By the end of the several-days-long visit, I was exhausted.
Going home, we had car trouble. It was cold, and we had to wait in the cold for a tow truck. When it arrived, I couldn't climb into it, and when I was boosted in, well, as ample as tow truck cabs are, three adults and two good-sized children just couldn't fit. The tow truck driver left with the car in tow, promising to find and send a more accessible vehicle for us. I paced. I cried. I was overly worried about the kids in the cold. And I shut down big-time. My husband thought I was angry, and we quarreled. The children thought I was angry, and were resentful.
I wasn't angry. I was worried about the cold, the approaching dark, the fact that we were on the side of a northern highway in the middle of nowhere, in the parking lot of an abandoned gas station, with two kids, no phone and evening approaching. When I tried to explain the overwhelming fear I was feeling, I couldn't... I didn't really understand it myself.
I tried to explain myself, my thoughts and reactions (and over-reactions) during that trip, during the months after the bleed, and couldn't. My family wound up thinking I was crazy. And, as I physically, i.e., visibly improved, I guess they thought I should be what I was before the stroke intellectually and emotionally, too.
I tried to persuade my husband to see my doctor, or his doctor, to talk to someone, anyone, who could help him understand. It was good advice, with one all-important drawback: when people think you're crazy, they think you're crazy across the board. Anything you say or do becomes suspect, is automatically regarded as unsound or invalid. I understand the way my family thought about me but understanding has never made it, will never make it, easy to accept.
[In 2008, I don't think my kids still think
I'm crazy, although I haven't asked them recently. I hope the job
I hold, the way I live, the way I deal with everyone around me (and
everyone around me deals with me), have combined to confirm my sanity
in their minds. Now, when I act crazy, I assume they're laughing
with me, not at me. Because I am crazy, but in a sane, normal sort
[In 2016, everyone who knows me knows I'm crazy, but in an entertaining, intelligent, creative, productive sort of way. It's been more than 20 years since I worried about what people think. One of the many things I've learned on this voyage is that people think what they think regardless of what I do, so I just do what I do, and they think what they think, and we all get along. Or not.]