My Brain Injury

11 December, 2003

On 14 July, 2003, I experienced a brain hemorrhage as the result of an undiagnosed Arteriovenous Malformation which had burst. I was whisked to the hospital within fifteen minutes thanks to my loving wife and a fire station which is right around the corner. This was a good thing because if she hadn't been there, I would be dead.

I lost consciousness in the ambulance on the way to the hospital and, when I woke up 10 days later, there was a 9" scar on my head where they had opened my skull and removed a clot the size of an egg.

It was almost as if I had woken up inside of a Bruce Springsteen song:

"It's like someone took a knife, baby, itchy and dull,
and cut a six-inch valley through the middle of my skull"

The fact that I woke up at all is somewhat of a miracle, seeing that about half of the people with my condition find out about it in the autopsy, but that's just the beginning. It is now November 22, 2003, a little more than 4 months later, and I am recovered enough that I am very frustrated that I haven't yet found a new job. My only remaining deficits are in my right hand, which doesn't work as well as it used to (improving daily), and my speech, which is also less-than-normal but improving daily.

Before it happened to me, I had no clue what an Arteriovenous Malformation was, or how it differed from other types of brain injuries that aren't caused by impact. Basically, an AVM is a cluster of arteries and veins that don't have the intervening capillaries that distribute the blood to the brain. It causes no problems until momentary high blood pressure causes it to burst, at which point it becomes like every other non-impact-caused brain hemorrhage: It bleeds out into the brain, and, unless treated right away, usually causes death or severe brain damage. I'm going to leave out what I was doing immediately prior to my AVM bleed because it involves people other than myself, but if you combine the fact that I was in bed with no clothes on, and momentary higher-than-normal blood pressure, it shouldn't be too difficult to figure out. If you absolutely must have more information than that on what an AVM is, here is a link to the National Institute of Neurological Disorders and Stroke that contains more than you ever wanted to know.

More links for the curious (I know I was):

• Central Nervous System Vascular Malformations at Harvard is pretty understandable, and to the point.
• Arteriovenous Malformations at emedicine.com is highly techical and full of hard facts.
• Arteriovenous Malformations at muhealth.org is a page with general answers and specific questions to ask your physicians if you think you've got one (you probably don't).
• Arteriovenous Malformation at the NWH Gamma Knife Center is symptoms and treatment from a place that specialises in treating brain related conditions.

I arrived at the Valley Medical Center emergency room around 2:00 am, and immediately had an angiogram, to determine what was wrong. Then I was housed in intensive care, where I would stay for 10 days. I had an embolisation and another angiogram, which convinced the neurologist, Dr. Peter Balousek, to operate that day, instead of waiting a day. I was in surgery for 11 hours, during which they resected my AVM and removed the clot. Now I have something I've always wanted (no, really), another hole in my head (for more information, see The Augur). I now have several metal clips, pins and screws holding my skull together, which means that I now have to have a special note from my neurologist if I ever want to fly anywhere. I also had another angiogram to make sure everything was the way it was supposed to be.

I was moved from intensive care about the same time I regained consciousness, and began my struggle to recover almost immediately. I was speaking, albeit slowly and with a profusion of sign language to suppliment it, although my right side still didn't work very well. A week later, I moved to Good Samaritan hospital for two weeks in their inpatient rehabilitation facility, which is where I really started to work on getting better. I had physical and occupational therapy (legs and arms, respectively) every day, and speech therapy twice a week. I also had a neuropsychological examination, to determine how much brain damage I had, and what (more or less) to expect from recovery.

At this point, four months later, I have trouble, more often than not, with my right hand not doing what I want it to about half of the time. Typing this page took about 4 hours, rather than the half-an-hour or so it would have before. I also have some problems with my speech including aphasia. Both of these are getting better daily, and since it's only been four months, I've got still got a lot more recovery to do.

While I was in the hospital, I was visited twice by my employer. At the time, I was most appreciateive of these visits, because I desperately needed a job, and my employer wasted no time encouraging me to get better so I could go back to work. I left the inpatient rehabilitation facility after two weeks, which was less time than they had originally thought I would be there, and did outpatient therapy for another month before I was ready to go back to work. I was at work for two weeks and my employer said that, despite the fact that I was the best typesetter he had ever had working there, he was firing me because I wasn't recovered enough for him. It's illegal for him to say that, but he only has 5 employees, so he's not subject to the rules concerning such things set down by the Americans with Disabilities Act, and even if he were, it would be more stress on me to take him to court, so I just let it drop. I have the feeling that once I find another job, my recovery will go even more smoothly than it already is.

07-DECEMBER-2003 Update I got a temporary (first 3 weeks of December) job which started 1-DEC. They're going to decide whether to hire me permanently after the first of the year. Also participated in three performances by the Fremont Philharmonic at the First Thursday Artists Collaboration in Pioneer Square, the Late Night Cabaret at the New City Theater, and the Fremont Players production of Jack and The Beanstalk at the Essential Chocolate Company.

30-JANUARY-2004 Update I'm working a 3-month contract at SchemaLogic, the place I worked in December. There's still no word on whether it's going to turn into a "permanent gig" or not, but I'm not worried... yet. I'll be a lot more likely to get work elsewhere if I'm already working. The Fremont Philharmonic is performing at the Late Night Cabaret again next week.

While I am extremely grateful for all the doctors and other people from the "medical model" have done for me recently, I have definitly not given up on my mistrust of health care professionals of the "medical model" in general. To this end, I have undertaken a lot of therapy based on my own intuition, and among these has been acupuncture. I had my first treatment on September 10th, and when I asked the acupuncturist what I would reasonably expect from the treatments, his response was to say "I don't know", so, if nothing else, I'm glad he's a friend of mine and not requiring payment in the tradional sense. At the same time, I had a performance before the treatment, and one after the treatment (The Fremont Players' Jack And The Beanstalk), and I definitly noticed vast improvement in the functioning of my right hand as a result. I don't have any way to tell whether I would have had the same degree of improvement at the same time without the accupuncture treatment, but it doesn't do any harm to believe that it was because of it, so I keep doing it in spite of the fact that he doesn't know what it's going to do to me. It's a lot better than a doctor saying that the only thing acupuncture does is increase blood circulation.

I am extremely lucky. I probably don't realise how lucky I am, even now, although death is a pretty extreme alternative. I give thanks, before anyone else, to Ganesh, the Deity of Removing Obstacles. If it wasn't for Ganesh and my wife (who noticed there was something wrong when I was still trying to figure out what happened), I wouldn't be here at this time. I am tempted to say that I actually experienced the physical presence of Ganesh while I was in surgery, and I know that He wasn't far from my thoughts throughout my "ordeal". Many people prayed for my recovery (thank you), and although they weren't praying to Ganesh, I'm sure He heard anyway. If you know me (if you don't, here's a glimpse of what I'm talking about) you probably know that, if given the opportunity, I'll rant endlessly about "christians", and this is no exception. I am perfectly willing to believe that what the say is true for them, however this kind of experience only makes it more obvious that they're wrong for me. If jeezis had appeared to me during surgery, it would have been entirely different. Enough said.

30-JANUARY-2004 Update My recovery has been miraculous... but more to other people than to me. From my point of view, I was perfect before (well, not really, but you know what I mean) and then I went to sleep and when I woke up it was 10 days later, and I had all these problems that they tell me will take the rest of my life to get "used to". Other people see someone who came very close to dying and has made a very speedy (7 months and a few days) and almost complete recovery, and they say "it's a miracle". I, begrudgingly, admit that it probably was a miracle, but that doesn't make the difficulties i'm having any easier.

While I was in the hospital I had 3 angiograms, which produced enough radiation that half of my hair fell out. I normally wear a sikha for religious reasons, but in spite of the fact that my mother-in-law argued with the doctors, and convinced them not to shave my head when I was in the hospital, when I got home, I shaved it off and am starting again from scratch.

11-DECEMBER-2003 Update: It's enough that it's a definitely darker spot than the surrounding fuzz, but not long enough to grab onto, yet. I'll get a picture up within a few days.

I talked with a representative from the Brain Injury Association of Washington, who informed me that, in the "medical model" they don't use the word "recovery", because people don't recover from brain injuries. Instead, they use the word "improvement", because this is more representative of what happens to a person who has had a brain injury. He asked me if I felt different after going through my experience, and said that, because of the fact that most people feel different, they hesitate to use "recovery" to describe the process of getting better. However, apart from the fact that I had to spend a month in the hospital, I don't really feel that much different than I did before, so I am more confident in using the word "recovery" to describe what I am doing.

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