Part I: 12 September 2002
People say, "you are so lucky to have lived." but I didn't live. The person I was before the blowout in my brain is dead.
I had recently turned 49 when, in march 1996 I experienced a ruptured subarchnoid hemorrhage. I was home alone on a Saturday when I began experiencing the classic SAH symptoms of headache and nausea. I had rarely had a headache in my life before, but this one was a beaut by any standards. It felt like a lightening bolt streaking through my head. However, like lightening, it was quickly gone. But I felt nauseous and began vomiting. Also felt somewhat "clammy." I sat down for a minute and tried to assess the situation. Wasn't sure what was happening. Called my HMO after-hours clinic, told a nurse what my symptoms were and asked her if this was something serious or if I should just lie down and get some sleep till I felt better. She left the phone to consult with a doc, then came back to tell me I should come into the clinic that day.
I didn't feel like I could drive myself so I called a friend. Got the ubiquitous voice mail. Called another with same results. So called a cab, who came in short order and took me to the clinic. I was grateful I didn't throw up in the cab. Quickly sent in to see doc, she said I was having a subdural hematoma and called an ambulance to take me to the hospital. I was shocked at the emergency room. So quiet. No one around that I could see. Not like tv at all. and no George Clooney.
Eventually neurosurgeon came to talk with me, not George - but still very cute. He said something about the clinic doc forgetting her med school stuff and calling it a subdural vs. subarachnoid hematoma. After reading some of the stories here, I think she did a wonderful job of recognizing the basic problem and getting me help ASAP.
The neurosurgeon gave me the usual spiel about MRI's cat scans, etc. Tests confirmed burst aneurysm. I figure it must have been a slow leak, however, because neuro wanted to wait till next morning - Monday - to do surgery. Said he wanted an "a" team and the "b"team worked on weekends. I didn't care which team it was. I thought maybe he just wanted to go back home to his life, but people tell me what he was saying was true. Somewhere along the line I recall him standing beside my prone self giving me the mortality speech.
I've always felt if your numbers up your numbers up...besides, I was exempt from tragedy. I had always enjoyed excellent health to that date. Escaped many of the bugs that sidelined most folks at least a few days each year, quickly recovered from anything I did catch. Totaled car, fell from trees, fell feet first from second floor balcony playing chase with a friend...never broke anything. Bruised a bone in my foot when I took a dive off the balcony. So I figured nothing could touch me. Besides, I've never been afraid of death - more afraid of living a physically limited life. To that end I got my friends and family to secure a dying declaration for my signature and a medical power of attorney for my most practical and unsentimental sis.
Had surgery. Everything else a foggy blur for several weeks. What I know mainly comes from asking friends and family. I was in the hospital for 4 weeks after neuro doc "cut,cauterized and clipped " the burst aneurysm and one or two more unburst aneurysms he discovered while mucking around in my head. Somewhere along the line I had a dream or a hallucination or some such that I had just been to Dublin, Ireland. It was very vivid and is about the most detailed thing I remember from those days. In the "dream" I felt seasick, which I attributed to having crossed the channel from England to Dublin by boat. I got off the boat looking for a pub to rest and get on sound footing again. I then wanted to tour the city looking for spots from James Joyce's famous book, Ulysses. In retrospect I can see the roots of this dream: my neurosurgeon was named O'grady, St Patrick's day occurred on or about this time, and I experienced that seasick feeling not only before, but for some time after the surgery. Still, I have to remind myself that I haven't really been to Dublin to this day, the "dream" was so real.
I remember very little else for the next few weeks. I think I slept a lot. from time to time I would look up and see friends and family by my bed...but I have little more than a brief memory like a photograph of these appearances. My mom and sibs all lived out of town. Two sibs had flown in from California and Maryland - I knew things were serious when I saw all my sibs parading by my bed! After 4 weeks in the hospital my mom and one or two of my 3 sisters took me home to my 2 bedroom apartment. They did their best to look after me and I will always be grateful, but fact was I was accustomed to living alone and really wanted my privacy back. Besides, all I really wanted to do was sleep all the time, which worried them so they would continually wake me up.
After a week of this I decided I needed to go back to work so they would all go home and leave me alone! So I did and they did. Then came the really hard part. I have lots more to say...sorry. an have been going on with this saga sometime now. But what I really want to talk with other survivors is what comes after you resume life, and I'm just not up to it now. I'm not sure if or how I can link a sequel to this episode... George Lucas has nothing on me. But will have to resume later. Whether you'd rather I did or not.
Part II: 16 September 2002
This part will be an ugly rant. Be warned and don't read if you want perky, all positive talk. Yeah. I lived through something that kills a great many folks. Yeah families and friends were wonderful and supportive. I have learned and grown through this experience and sometimes for the better, and yes, I do understand the importance of positive attitude in healing. But when I came to this site I was distressed to see the quick response to any sign of trouble with the quick positive mantras somewhat reflected in previous sentence. But I was more than a little distressed when all those caring supportive folks expected me to be all better 6 months after the event. I was bitterly disappointed that I was not all better. Short term memory was as you all know too well, horrible. Vertigo still plagued me at the slightest tilt of my head. Fatigue made it a horrible struggle to get through each day at all, much less to function well.
When I was a child I had read lots of horse books about horses. A familiar plot involved a horse who broke his leg during a very important race, but who finished the race on "three legs and a heart." I had always thought I could meet any adversity and finish on "3 legs and a heart." One reason I was so anxious to return to work. I am a lawyer for a state government agency and I had routinely handled large dockets of cases effectively and efficiently, a valued skill in my world. I had found work I loved. I had not turned out to be the Clarence Darrow of my dreams, but I felt that I was very fortunate to find work that performed a definite benefit for the public and which suited my personality, skills, and weaknesses to a tee. I worked long and hard because there was much work to be done...and because I loved it. I also was rewarded with promotions, recognition, and the admiration of my peers. It was a small pond, but I swam through it happily.
Post-a, it was a terrible struggle just to get through the day. I crashed hard as soon as I got home from work, not reawakening until time to get ready for the next day. On days when I did not go to court I had to review cases, answer legal questions from support staff, and make decisions on how to proceed. Though not ever as much fun as court, I nonetheless enjoyed this work too and immodestly say I was also very good in this part of the job. Not any more. It was much harder to make myself understand the file I was looking at or understand the question being asked. And much harder to separate the important from unimportant. So making decisions that had once been easy became very laborious and I sometimes bogged down in minutiae. Not good for a lawyer who needs to process lots of cases coming down the conveyor belt. Think of Lucy and Ethel working on that conveyor belt of chocolate candies.
Because I found it so hard to make decisions, and because the cases kept coming at a steady stream, the result was a large pile of cases strewn in disarray around my office. One day I evidently became overwhelmed with the task because I was sitting reviewing files one minute and the next thing I knew a crowd of coworkers were huddled at my office door whispering among themselves. They thought I was dead and were deciding who would have the task of poking me to be sure! Anyway, I was very embarrassed to discover I wasn't super Ag anymore. Any expression of the anxiety was met with some perky perk-up reply. I was clearly expected to be ok and if I wasn't I needed to keep it to myself. After all, I ws lucky to be alive.
I think now I was grieving my lost self, only it simply wasn't permitted. I think our culture is so can do, have a positive attitude, be strong that we cannot allow people time to feel bad. we have to fix the problem for them (ie, you just need to drink more coffee, you would feel better if you...did some simple thing that has always worked for me, who has never come close to what happened to your brain. I don't think I particularly wanted people to feel sorry or bad for me. I just wanted to be allowed to feel bad for what I had lost. Also, I had become curious about the lost time in the hospital and for a few weeks thereafter. People saw that as another sign that I couldn't get past it, I needed to move on. I just wanted to know what happened those weeks I slept in that bed. I still don't know much about that time. Anyway, I quit asking when a friend said I was talking about it all the time. Need to move on.
Well, the rest of the world moved on, but I became more depressed and isolated because I couldn't talk about the most important event in my life to date. Something that changed the world for me. I think a lot of the reason people have so little understanding is because the physical injury is hidden. folks associate the symptoms of the injury with malingering - fatigue, forgetfulness, etc. I started comparing the situation to a person who had an arm cut off. That person can make adjustments and live and work as before, but not the same as before. And people wouldn't expect him to. He may be able to swing the baseball bat with one arm, but folks understand it will be a long time, if ever, that he can swing it with any skill. And they'd don't expect he will ever achieve the aim and strength of the swing that he had when two-armed. But six months after an explosion in the brain and one is supposed to be all better and never refer to the missing arm - brain cells - again.
Don't know if what I am saying resonates with anyone. And I eventually got past this stage (for the most part) I finally accepted two things. I was probably not ever going to regain the quick,reliable brain I'd enjoyed before. And most people would never understand the problems. So I quit talking about the event that changed my life and which limitations are with me every minute of my life. I don't want to hear that another cup of coffee will stop the fatigue or that the person who has insomnia problems wish they had my hyper-somnolence problem. I don't want to hear that my memory problems are just getting old and have nothing to do with the destruction in my brain. So I quit talking about it. And realized I am alone.
I hoped to find a kindred spirit on this site. But everyone is busy busy being positive and really don't want to hear from someone who is still having problems six years after the surgery.