I call this section What No One Ever Knew because it’s only been as of late that I’ve been able to verbalize my innermost thoughts. So let me start at the very beginning of what Nancy has referred to as my GBS Adventure.
It all started a few days into January just after I had taken kickboxing at Gold’s Gym. I came home from class and, ascending the stairs, I suddenly felt my legs give way under me. Although I couldn’t walk at all, I forced myself to crawl up the steps into the living room.
That night really weird things begin to happen to me. Coming out of the shower I suddenly felt a tingling in my toes and in the tips of my fingers. I had not been in bed more than a few hours when a strong pain developed in my right shoulder, and it was only a matter of time before Nancy took me down to the ER at Los Robles Hospital; but nothing could be found so I was sent home with pain medication. The next morning the pain became so intense that we had to go back again, and this time I had to be put into a wheelchair in order to get to a room in the ER. Once again nothing could be discovered but I was now kept at the hospital for observation.
And it was during that time that five of my doctors met to decide what was wrong with me. For several days many tests were run including a CAT scan, an MRI, and bone scan; and it was only when I had a spinal tap that the correct information that was needed came through: I had Giullain–Barré Syndrome.
During the days when my doctors were in the process of coming to this decision I became very close to death. I think that it was probably on the third day that I nearly died because my bowels had become impacted. But by good fortune my gastroenterologist, Dr. Gilbert Simoni, was able to correct that problem and actually save my life. But the fact remains that I felt that since I was already 75 years old, the time had come for me to die anyway. I believed that I had already put in enough time on earth: I done all the things I wanted to do and I thought that my days had come to a close. I didn’t want to push it: already I had a pacemaker, cancer of the prostate, and osteoporosis and I simply didn’t really want to live anymore.
Transferring to the UCLA medical center in Santa Monica was what kept me going because once there, my blood was cleaned for five days in a row, and that gave me a chance to return to using my limbs, which up to that point where totally paralyzed. Little by little each day I gained a bit more action in my legs and arms. My right arm though, has not yet returned to complete mobility.
All during this time of anguish Nancy appeared every day without fail to look after me, often sitting for hours in traffic on the PCH. In time Nancy took it upon herself to try to figure out where I should go next for physical therapy as no one seemed to know anything about it.
It took Nancy a full two weeks to discover Care Meridian and it’s myriad of homes for folks like me located out in Chatsworth. And it was at the Oso House that I began to come back to life. At first, I was not more than just a sack of loose bones, but the folks there worked with me day after day to bring me around.
It was at this time that my life began to change because I got a great of amount of attention. In the evening I had two sets of people who took care of me, and during the day there were many more including my occupational therapist, my physical therapist and the occasional visitor along with Nancy. So concerned were they for my life, that my brother, Ernie, and my dear friend, Marc Mostovoy, phoned me practically every day.
As my health improved, my unique personality became well known throughout Oso House and I became very friendly with a number of people there. Since most of the members of the staff there were bi-lingual (Spanish/English) I took that opportunity to study Spanish and went by the moniker, Chico. During the last couple weeks I was there, one of the nurses whom I hardly knew began to take an interest in helping me learn to walk. Little did I realize but that she is afflicted herself, with the incurable Narcissistic Personality Disorder.
Returning home I began to get into an entirely new routine with two caregivers and Nancy doing their best to keep me going. Twice a week I go in for my therapy, one of my caregivers driving me there and staying throughout the sessions. On Wednesday of every week my caregiver, Rosalva, takes me to the gym with her where I work out for an hour and then take yoga. The latter class has turned out to be a very important factor in helping me to walk, create better balance, and just basically have a better outlook on my life.
Still I miss all of the attention that I was getting up at Oso house. It really was quite constant with so many people looking after me and, just enjoying being with me. Among the people whom I got to know very well is a woman I refer to as Stella, meaning Star. Stella was in much worse shape than me because she had broken her neck. When I last saw Stella, she was just learning to walk but not making the kind of progress that I’ve been so fortunate to make. So overall I consider myself extraordinarily lucky and I do hope Stella, too, will soon have a better time of it.
Now that I’m back home I have tried to go back to doing some of the things that I did before I became ill. Just today I began working on models again with my resistant fingers. Unfortunately, the same fingers do not permit me to play the oboe, so this is been the cause of great frustration for me. Also certain weakness overcomes me after my therapy sessions, and therefore I must take a Siesta every day following these intense sessions.
The project that I began back in December regarding the oboist, Marcel Tabuteau, with my colleague Marc Mostovoy has started up again and this is great fun as it involves using the Finale music writing program to add the musical excerpts to a wonderful story that Marc unfolds about the great oboist. In fact when I was at Oso House the story of Tabuteau was one which brought great joy to several of my caregivers especially Marie, an African, who taught me how to pronounce Tabuteau’s name correctly in French.
My dear caregiver Olga has been very flexible and helping me to adjust to my home life. She comes over right after the night shift at Oso House, unbelievable as that may seem, to help me get the wash done and take me to my two therapy sessions at the Los Robles Rehab Center. In fact, one day Olga and I went on a hike up in the Santa Monica Mountains and, I must say, after laying in a bed for so long and being a mere patient, it was great fun feeling like I was a regular human being again.
As of late though I have felt a certain melancholy at not being able to do much more with my friends and colleagues. At times I have awakened in the night and felt that maybe I had it right during the time when I was in the hospital in very early stages of my malady, when I thought that perhaps 75 years was long enough to live. Fortunately, as the days wore on in the hospital my focus was directed towards my beloved Nancy and being able to get home to her. Night after night I prayed to God that I would make it.
And there she is now: every night without fail Nancy lies in my arms as we fall asleep.