1998: My Year From Hell
I remember some of my days in the hospital during my year
from hell, which was the year I was injured, and going
through rehab hating almost every minute of it
Introduction
The first scary thing that happened is when I woke up on May 2, 1998 and couldn't use my legs. It was then that I was introduced to the words paralyzed, paraplegia and the concept of using a wheelchair to get around. I had never really thought about these before and certainly not in relation to me. My point of view of the world was now boobs and bellies.
The fact that I couldn't use my legs wasn't the only shock. I also couldn't control my bowels or bladder, which took years to understand and master. I also couldn't feel or use my penis. I was only 38 and my days of sexual intercourse were over. The last orgasm I'll ever have was in April of that year. Now that was scary. How's this for irony: in 1997 I had a vasectomy as we were done having children. One year later and it didn't matter. These issues are still hard to deal with on a daily basis. So I've adapted my house and myself to make my ADLs acceptable. ADLs are the Activities of Daily Living. Examples are brushing my teeth and hair, getting dressed, and eating meals while sitting in a wheelchair. But at least I was mobile for bursts of time although for obvious reasons I couldn't leave the hospital. Just getting outside on the porch for a few minutes a day actually seeing the sky, breathing unfiltered air and feeling the warmth of the sun on my skin was a huge event whenever I could swing it.
Weight loss
Mid-year I lost my appetite and withered to 116 pounds (from 155). I became a shadow of a man, becoming Lincoln gaunt. There was no real way to get exercise to control weight, so some people gain weight. I was the opposite. I was put on a feeding tube, which snaked through a nostril into my stomach. I was fed this awful looking goo that was supposed to contain enough nutrients to be health providing. If I were to look at the ingredients I doubt I would agree. It was a disgusting experience. Eventually I started eating after they gave me a milky substance that was designed for pregnant women to help them not get nauseous. It had the unfortunate side effect of stimulating their appetite! It was bad for them, but good for me. It took awhile, but once they saw that I was eating, they removed the tube, which stung like my nose was being reamed out. That itself was an experience I'd very much like to forget. I slowly gained weight up to 130 (still underweight, but I wasn't gaunt).
It's events like that, which caused me to cherish my health more than I ever had. I now weigh a very solid, healthy 160. I'm told that is still less than normal. What is normal when half your body is atrophying and losing heavy muscle mass? If I wanted to gain weight, there are two ways. One, I could eat a lot more food, but then I'd just get fat. So that wasn't an option. Two, do strength training to increase the muscle mass on my torso. I've chosen that path.
Seizures
This whole adventure began on January 17, 1998 when I had a grand mal seizure. I had a mixed glioma brain tumor that had not been previously known. There were no warning signs, like abnormally strong headaches or excessive fatigue. Every two months through May 1999 I had one of these monsters. Unlike some people, I never had a warning; they would just happen. One minute I was doing something and the next I was waking up somewhen (my word for someplace and sometime) else. The most notable example was in March 1999 at my 40th birthday party at Mark London's house. He had invited many of my friends from Autoland as well as the few relatives he knew of that were local. I remember talking with my assistant one moment and the next I'm lying in a bed inside the house looking at the ceiling with paramedics standing around. That's a scary feeling. I had lost an hour of time. Right in front of him and my guests/friends I had one of these giant seizures. It must have been quite a nasty sight.
I once had a seizure and Nancy held me. She described what I did. Besides shaking a lot, I built up a foamy mucous that spilled out of my mouth. My eyes rolled back into my head, I grew very weak, it seemed to her that I was very thirsty, and my head lolled to the side as if I couldn't support it.
Another seizure stands out: in April 1998, I was in my home office working on my computer one moment and the next I was waking up on the floor. No one was home, so i called 911. When I was at the hospital, lying on a gurney, I had another one, this time throwing my left arm backwards over my head dislocating the shoulder. Because of that event, I suffered frequent subluxations in the left shoulder over the next several years. A subluxation is a minor dislocation. The shoulder pops out of alignment, but through relaxation I can get it back into place. Through vigorous exercise (designed by Taylor Isaacs). I was able to strengthen and stabilize the shoulder so they stopped, but the damage had been done. In fact the shoulder had become so unstable that years of wheelchair pushing ended up grinding the ball head of the humerus to the point where by 2010 I was suffering severe pain to simply move my arm. On January 11, 2011 I had a hemi-arthroplasty, or partial shoulder replacement. They replaced the top of the humerus with aluminum. I went through a lengthy rehabilitation over the next couple of years. All of these events are due to that seizure in 1998.
Rehab
I spent most of the six months from April to October at UCLA, but also some time at Henry Mayo Newhall Memorial in Santa Clarita. It was my great misfortune that I never went to Northridge as they are a preeminent SCI rehab hospital. Neither my relatives nor I knew. I just went where my insurance sent me. An example of a challenge was when the physical therapist would tell me to lean over the side of the bed, scoop both legs up and then swing them onto the bed. Ahem. I had no sense of where my center of gravity was as I was paralyzed from right below my chest. I have little core strength, so leaning over the edge of the bed felt like I was surely going to fall off the bed. I wished that they could be paralyzed for just one day so they could appreciate what I was feeling. To this day, I grab one leg at a time and still feel unsure of my center of gravity; I just try to maintain a grip on the bed as best as possible.
In all the time I was at the hospitals, I didn’t see one other person with an SCI.
Hospital Food
It may be obvious that hospital food is anything but gourmet, but I had it worse than others as I have been health conscious my entire adult life to the point of obnoxious. When I first got into the Henry Mayo Newhall Memorial Hospital I asked to speak with the on-staff dietician to see if there were alternative choices. There weren't, so I had to deal with the food I was served. At UCLA, there was a dietician who told me about the off-menu items I could order, so I wasn’t stuck with what was on the menu. At least I had options.
Pressure Sore
While I was in the hospital I got a laptop to keep my mind busy. I spent long hours on my back exploring the nascent Internet and learning new things. I had not been told of the dangers of not changing positions and that constantly laying on one side, I would put undo pressure on the skin by bony prominences, such as my ischial tuberosities or coccyx. Well, that pressure finally broke through the skin over my coccyx in August and I developed a Stage 3+ pressure sore. Stage 1 is redness. Stage 2 is sub-cutaneous cell breakdown. Stage 3 is when the wound that was under the skin, breaks through the skin and needs attention, such as infection control. A Stage 4 is when it goes all the way to the bone. Mine broke through the skin and they started treating it by packing It with gauze soaked in a solution, but I can’t remember what it was. When I got home in October, they taught Nancy how to change the dressing and take care of it. Finally in August of 1999, it had healed enough to stop all treatment. It is now an area of discolored and waffled skin.
MRIs and spinal taps
Over the six months I was in the hospitals I had numerous MRIs of my head so they could track the success of the excessive amount of medicine they were giving me. As an avid health-nut, I wonder how much all the MRIs, CT scans and X-rays affect me.
In order to track the progressive of the loss of myelin, I had to undergo a spinal tap every other month for a year. What the doctor did was clean a patch of skin directly over the extraction site on my spine. A long needle was inserted into the space between disks in the lower back. As my injury is incomplete, although I have no motor control of the lower half of my body, the pain and pleasure (to a degree) pathways are sort of still there. I can for example feel when there is deep pressure on my legs, which is why I get a full body massage every week. After the needle is inserted into the spinal cord, he pulled out some spinal fluid to examine to make sure the white blood cells in there had subsided. I was surprised to see that spinal fluid is as clear and consistent as water. Towards the end of these torture treatments, he had to put the needle lower and lower as the pain was too great: my sensation level was moving down. The tests showed that the production of white blood cells had normalized. I was out of the frying pan.
Hospital Living
It probably doesn't need to be explained in too much detail the monotony and helplessness that living for extended periods of time in a hospital can bring. Just trying to sleep amidst the noise and light and early morning (like 4 or 5 AM) visits by phlebotomists for thrice weekly blood draws was a huge challenge. I looked forward to two events: one, getting a bed bath as they weren't set up with a tub bench and shower hose in the shower room. Again, the hospitals was not a place that saw many persons with an SCI. Seems like these things would also provide for that elderly person who had difficulty standing or a lack of center of gravity for which sitting is the only way they could get a shower.
As Mohammed couldn't go to the mountain, they brought the mountain to Mohammed. Since I couldn't go to the shower, they made a feeble attempt to bring the shower to me. There's a huge difference between taking a seated shower using a shower hose with water flowing over my body and laying in bed while a nurse does her best to clean me up. Don't get me wrong, when it was my turn to get a bed bath I was ready, willing and able.
Night Chills
Due to a medication I was given, I had horrible night chills. People had to bring me warm blankets.
Leg Rash
Another medication gave me nasty leg rashes. At one point an infectious disease doctor came and evaluated me as I had MRSA. They were trying everything they could to reduce swelling in my brain, including cortisone.
Good Times
One of the best times I had was when Nancy would bring our two young kids to me on Fridays and we'd have pizza and a movie night. That was fun.
I also enjoyed having visitors as they would break up the monotony.
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