September 1, 1967. I was 11 years old, going on 12, and that meant that I would get to go to the new high school. But as it turned out, I didn't get to go to my new school as soon as I had thought I would. Instead, a few days before school began, an aneurysm in my left hemisphere burst, and changed my life irrevocably.
Throughout my childhood, I had been used to having bad headaches. So when I woke up one night with a particularly bad one, I didn't think much of it. I went to the bathroom to take some aspirin and got back in bed. After that, my memories of the next few weeks are either blurry or non-existent. My sister and I shared a bedroom and apparently, after I had gotten back in bed I began vomiting uncontrollably. Terrified, she got my parents. I continued vomiting while fading in and out of consciousness - mostly out. Not sure what was wrong with me but wanting to wake me up, I'm told my father slapped my face several times. When that didn't seem to be helping, my father took me to the hospital.
They turned out to be pretty incompetent there. The doctor kept insisting that I overdosed on sleeping pills, while my father kept insisting that was impossible as I had no access to sleeping pills or any medication stronger than aspirin. The doctor, nurse and my father took turns slapping my face to keep me "awake." Then they pumped my stomach (which I fortunately have no memory of), injected me with caffeine, advised my father to keep slapping my face, and sent me home.
In the morning I was no better, and it became clear that something was seriously wrong. I continued fading in and out of consciousness while my parents tried to keep me "awake" by slapping my face. My parents also tried to get me to walk around, but that proved impossible. I couldn't even sit up by myself, let alone walk.
The family doctor was called in to examine me, and he pronounced me as suffering from a bad flu bug. He advised my parents to let me sleep as much as I wanted. So the face-slapping finally stopped. By the next day, my parents noted some improvement, as I was able to watch TV and play cards with my mother. But I still had very little muscle coordination. I couldn't walk or stand by myself. The family doctor was called again, and without re-examining me, he suggested that I would be better in a few days. Two days later though, I was clearly not at all better. Finally the doctor admitted that there might be something more serious going on, and I was taken to a large teaching hospital, where I was seen by a team of neurologists.
For the first week or so they weren't sure what was wrong, but they eventually figured out that I had had a brain hemorrhage. Specifically, the diagnosis was "posterior fossa A-V malformation with subarachnoid hemorrhage." There was no point in operating, as by then the bleeding had stopped, but I had to spend the next 3 weeks or so flat on my back to make sure it didn't start again. For the first few weeks, I drifted in and out of consciousness. When I finally re- emerged into full consciousness, my entire right side was paralyzed. It would be another month before I was discharged from the hospital, and I spent my 12th birthday there.
Thus began about 6 months of intensive physiotherapy and occupational therapy, followed by several years of less intensive work. I had to re-learn how to walk and talk, and I learned to become left-handed. Within the first year, I regained about 75% of the use of my right side, but never more. I remain left-handed, as I will never regain fine motor skills on my right side.
Throughout my teens and 20s, my right-sided weakness caused me little difficulty as I was usually able to rely upon youthful energy to remain active. By my 30s, though, I began noticing that I tire much more easily than I used to, and I have never done well when tired. Everything turns into a monumental task when I'm tired; not just moving around, but thinking and even speaking. I tend to speak in monosyllables when tired because that's about all I can manage. As I age, I am also becoming aware of a slight aphasia, though it too is more noticeable when I'm tired.
Except for the people I am very close to, others don't really notice my difficulties. I've learned not to stay out until I'm too tired, so few people ever really see my struggles. Most people are astounded to learn that I had a brain hemorrhage and don't have full use of my right side, because they think I look and act so "normal." Some people also have trouble understanding how I could have gotten my Ph.D. (in Sociology), given what happened to me. I think, though, that their incredulity is a reflection of how misinformed the general public is about brain injury. Sure, I have permanent disabilities, but they're not related to my intelligence, and I lead as full a life as anyone.
What my life would have been like had I not had a brain hemorrhage I couldn't say. It happened at such a young age that it feels as though it's always been a part of my life. For a number of years now, I've been active in the disability rights movement. I've also been studying the whole issue of disability from a sociological point of view.
I'd like to hear from others with similar experiences. I've never met anyone who had a brain hemorrhage at such a young age. I'd especially like to hear from women who are interested in writing at length about their own stories (see my description in the Exchange of Information Requests section of the Aneurysm Support Page).