CHAPTER 1 - THE EARLY DAYS
Things finally seemed to be settling down . I had a decent job that I actually liked, my kids were doing pretty well in school , and my marriage was good . We had just stretched to buy a house ; no mean feat in the Bay Area when you have one breadwinner and four kids . I had just had a complete physical and the doctor said I was in 'excellent shape '. I coached my boys in football and baseball and was very active in the Scouts and school . All in all, your basic American Dream . I was forty , and it felt like life was just beginning .
As the old saying goes ,' If it seems too good to be true, it probably is .' That was certainly true for me. About a week before IT happened, we went to friends to have what had become a traditional meal; Dungeness crabs, bbq'd oysters , sourdough bread, salad, corn on the cob and homemade beer. I remember getting such a bad headache that I lay down after dinner. I had gotten headaches before, like many people do and did not think anything of it.
A week later we went to back-to-school night and, as had become a custom, went out to dinner with some friends. Again, I got a headache, which we thought was due to skipping lunch. I went to bed. The next day I felt bad when I woke up, but insisted on taking the kids to school on the way to work. As I drove, my speech slurred and I got tunnel vision. I remember just focusing on the centerline and the car ahead. After I dropped the kids off I decided to go home. I managed to drive back up the 6 miles of curvey road to our home. Somehow I made it. My wife says I stumbled down the hall, using the walls for support. I said I just wanted to hold Jane and fall asleep. She insisted on calling my doctor. It would not be the last time she would save my life.
I had to crawl out to the car, and could barely climb in. Jane urged me on, and then drove me to Mt View. My doctor took one look at me and said, "Take him to the ER." He thought I had menengitis. He sent us to El Camino Hopital, where he practices. I barely remember anything else, except that I did not want to go to the ER. My wife says I tried to drink water but could not swallow. She says as I lay in the ER my right arm went limp, and I asked what was going on. Right before I lapsed into a coma, I said, "I'm so scared."
My scan was negative, and my spasms made the MRI blurry. The doctors thought I had meningitis or Lyme disease, and told my family they might lose me. It turned out the lining in my basilar arery dissected, or came loose, due to an extremely rare birth defect, and blocked bloodflow to my pons, which controls motor activities. While I was in the coma I spasmed so badly for three days they locked me to the bed. The locks were metal, and cut into my skin. My wife made them pad the locks. My whole family flew in , although I never realized it .
When I started to come to, I was on life suport. My kids cried when they saw me. I remember Jane singing 'Phantom of the Opera' songs to me, because she had heard that people in comas can often hear you. I used to play those songs a lot. She noticed I was following along with my eyes. I soon realized they were all I could move-in fact, they were the only reason I was not a complete vegetable. My dad explained that I had no motor control, and I got it - I was trapped in my own body. One of the first things I asked Jane was to take care of a traffic ticket I had just gotten - that convinced her I was my old self. My brain itself was fine , except for some one-time short term memory loss. I was not able to breathe on my own , and had a feeding tube up my nose. My brother Pete is an engineer and he made my first 'board' based on something he read on the Internet . I would look at a group of letters and they would read them out . Two blinks was 'yes ,' one was 'no.' That way we would slowly spell out each word I wanted to say, letter by letter. Such was my new life . My job, and all of my business contacts were a thing of the past-except for some real estate guy who kept emailing to say he was sorry to hear about me and did I still want his building? The sudden transition from highly active to motionless made time pass very slowly . It was excruciating. It seemed like I was in the ICU for months ; it was 22 days . My paralysis was so complete at first that if they laid my head sideways my ear got very uncomfortable and I could not do anything about it . My sense of feel was completely intact , but it was almost impossible to tell anyone what was uncomfortable . My mouth was frozen shut, and the big challenge in the early days was for my wife to brush my teeth.
When I came to I was on about 25 medications , mostly antibiotics to keep me from starting to rot alive - since I could not move and my immune system was probably doing overtime . The immediate effect of this was that I frequently had hallucinations . First , I was convinced that I was in Kaiser Permanente , and that the doctors were trying to kill me. I also thought some woman kept dressing up like my Mom to gain my trust and then do me in . I thought the nurses kept intervening , against orders , to save me from being dumped into a meat grinder . Although I never moved from the ICU , I thought they had put me in a parking garage to save money. I imagined that I kept going places and our car had a special lift to get me in . I used to swim a lot, and I kept fantasizing about the water. We had just driven through the Sonora Pass on vacation and I dreamt we went there again . For awhile I thought I had turned into a horse , roaming Central California. My friends must have kept visiting , because I had all kinds of hallucinations about them. I thought some guy was trying to take advantage of my situation and get my 54 MG, which I had built in high school and still treasured . I vaguely remember the doctors saying I had a periodic fever ; this must have been related to the hallucinations , which came and went. The hallucinations were unnerving , and basically the time in the ICU seemed to take forever. When the nurses started calling me 'the miracle ,' I realized how close I had come to death .
Finally a Doctor from a rehab hospital came in . He made me laugh for the first time . They made it sound like his exam was very important ; that his rehab hospital was a big deal and was hard to get in to. I did get in , probably because I had good insurance, but we weren't that impressed with his hospital . Finally the day came to move. By now I had a tracheotomy and a feeding tube. They had to move me by ambulance because I had not been out of bed in weeks . I still got oxygen through my tracheotomy , and the paramedics managed to dump liquid into my tracheotomy tube, directly into my lungs . That wiped me out for a few days .
Things finally seemed to be settling down . I had a decent job that I actually liked, my kids were doing pretty well in school , and my marriage was good . We had just stretched to buy a house ; no mean feat in the Bay Area when you have one breadwinner and four kids . I had just had a complete physical and the doctor said I was in 'excellent shape '. I coached my boys in football and baseball and was very active in the Scouts and school . All in all, your basic American Dream . I was forty , and it felt like life was just beginning .
As the old saying goes ,' If it seems too good to be true, it probably is .' That was certainly true for me. About a week before IT happened, we went to friends to have what had become a traditional meal; Dungeness crabs, bbq'd oysters , sourdough bread, salad, corn on the cob and homemade beer
A week later we went to back-to-school night and, as had become a custom, went out to dinner with some friends. Again, I got a headache, which we thought was due to skipping lunch. I went to bed. The next day I felt bad when I woke up, but insisted on taking the kids to school on the way to work. As I drove, my speech slurred and I got tunnel vision. I remember just focusing on the centerline and the car ahead. After I dropped the kids off I decided to go home. I managed to drive back up the 6 miles of curvey road to our home. Somehow I made it. My wife says I stumbled down the hall, using the walls for support. I said I just wanted to hold Jane and fall asleep. She insisted on calling my doctor. It would not be the last time she would save my life.
I had to crawl out to the car, and could barely climb in. Jane urged me on, and then drove me to Mt View. My doctor took one look at me and said, "Take him to the ER." He thought I had menengitis. He sent us to El Camino Hopital, where he practices. I barely remember anything else, except that I did not want to go to the ER. My wife says I tried to drink water but could not swallow. She says as I lay in the ER my right arm went limp, and I asked what was going on. Right before I lapsed into a coma, I said, "I'm so scared."
My scan was negative, and my spasms made the MRI blurry. The doctors thought I had meningitis or Lyme disease, and told my family they might lose me. It turned out the lining in my basilar arery dissected, or came loose, due to an extremely rare birth defect, and blocked bloodflow to my pons, which controls motor activities. While I was in the coma I spasmed so badly for three days they locked me to the bed. The locks were metal, and cut into my skin. My wife made them pad the locks. My whole family flew in , although I never realized it .
When I started to come to, I was on life suport. My kids cried when they saw me. I remember Jane singing 'Phantom of the Opera' songs to me, because she had heard that people in comas can often hear you. I used to play those songs a lot. She noticed I was following along with my eyes. I soon realized they were all I could move-in fact, they were the only reason I was not a complete vegetable. My dad explained that I had no motor control, and I got it - I was trapped in my own body. One of the first things I asked Jane was to take care of a traffic ticket I had just gotten - that convinced her I was my old self. My brain itself was fine , except for some one-time short term memory loss. I was not able to breathe on my own , and had a feeding tube up my nose. My brother Pete is an engineer and he made my first 'board' based on something he read on the Internet . I would look at a group of letters and they would read them out . Two blinks was 'yes ,' one was 'no.' That way we would slowly spell out each word I wanted to say, letter by letter. Such was my new life . My job, and all of my business contacts were a thing of the past-except for some real estate guy who kept emailing to say he was sorry to hear about me and did I still want his building? The sudden transition from highly active to motionless made time pass very slowly . It was excruciating. It seemed like I was in the ICU for months ; it was 22 days . My paralysis was so complete at first that if they laid my head sideways my ear got very uncomfortable and I could not do anything about it . My sense of feel was completely intact , but it was almost impossible to tell anyone what was uncomfortable . My mouth was frozen shut, and the big challenge in the early days was for my wife to brush my teeth.
When I came to I was on about 25 medications , mostly antibiotics to keep me from starting to rot alive - since I could not move and my immune system was probably doing overtime . The immediate effect of this was that I frequently had hallucinations . First , I was convinced that I was in Kaiser Permanente , and that the doctors were trying to kill me. I also thought some woman kept dressing up like my Mom to gain my trust and then do me in . I thought the nurses kept intervening , against orders , to save me from being dumped into a meat grinder . Although I never moved from the ICU , I thought they had put me in a parking garage to save money. I imagined that I kept going places and our car had a special lift to get me in . I used to swim a lot, and I kept fantasizing about the water. We had just driven through the Sonora Pass on vacation and I dreamt we went there again . For awhile I thought I had turned into a horse , roaming Central California. My friends must have kept visiting , because I had all kinds of hallucinations about them. I thought some guy was trying to take advantage of my situation and get my 54 MG, which I had built in high school and still treasured . I vaguely remember the doctors saying I had a periodic fever ; this must have been related to the hallucinations , which came and went. The hallucinations were unnerving , and basically the time in the ICU seemed to take forever. When the nurses started calling me 'the miracle ,' I realized how close I had come to death .
Finally a Doctor from a rehab hospital came in . He made me laugh for the first time . They made it sound like his exam was very important ; that his rehab hospital was a big deal and was hard to get in to. I did get in , probably because I had good insurance, but we weren't that impressed with his hospital . Finally the day came to move. By now I had a tracheotomy and a feeding tube. They had to move me by ambulance because I had not been out of bed in weeks . I still got oxygen through my tracheotomy , and the paramedics managed to dump liquid into my tracheotomy tube, directly into my lungs . That wiped me out for a few days .
When I got to the new hospital , they misinterpreted me to say I had chest pains, and rushed me to the cardiac unit , where they gave me a full workup . They didn't find anything , of course , and cleared me for rehab . Once in rehab I just lay in bed for awhile . Therapy was about to begin in earnest .
posted by hevans at 3:07 PM
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