The next few days passed as though in a haze. We were barely able to function but muddled through, trying to behave normally. Sleep was disturbed and uneasy as we tried in vain to make sense of this outrage. I did not show anger or resentment but found myself sobbing uncontrollably time and time again. How is it possible to shed so many tears and when would they end. Would they ever end?
I continued to research but found my mind wandering and couldn't focus on the scientific abstracts on the screen. Needing a break I watched a rerun of my favorite show, "Seinfeld". It was the segment when Kramer donated his blood to Jerry who immediately became hysterical and was now in debt to his quirky neighbor. The tears running down my face now were from laughter...my favorite pastime. I returned to the computer, but now something was niggling at the back of my mind and I knew it was important. The next morning while reading the newspaper there was an article requesting donations of blood for a child who was ill. All of a sudden the knowledge that evaded me came to the forefront of my mind. Blood donation was the key and what ensued caused more confusion, some hope, and endless waiting.
Four years earlier I was scheduled for a hip replacement and was required to donate my own blood in case a transfusion became necessary. This was no problem as I had given blood before and happily did it again. There was no need for a transfusion and all went well. Then, about three months later I received a letter from the blood bank. They stated I would no longer be able to make a blood donation. I had a rare blood disease which was nothing to worry about. Or so I thought at the time. I could call for detailed information if I was concerned. Of course, the concern was for my children. The woman was glad to give me information. The disease had a name, HTLV 1/2. Otherwise known as Human T Lymphotropic Virus. But I was told not to worry. Only 2% of the infected population ever showed a sympton. Well, then, what's the chance of that happening. I took notes on the back of the letter. She said the disease had nothing to do with the HIV virus. We ended the conversation on that note.
Remembering these bits and pieces of the dialogue did not satisfy my suspicions of something very important I was missing. I knew the letter was stuffed in a drawer somewhere in our home. With the help of my patient husband we combed through every pile of papers dispersed throughout the house. St. Anthony was called upon in earnest and finally the elusive letter was found. I quickly turned it over and found the following phrase scratched on the back surrounded by my ever present doodling. This rare disease can be the precursor of MS and Leukemia. Dumbfounded is the only word to describe what I was feeling. With only a few days left before my treatment consultation for ALS I turned to the trusty internet for more information. The disease is found in tropical areas such as Central America, Africa, Japan, the Phillipines, Portugal, and various other countries. Pygmies had the disease, too, and several Indian cultures. What was going on. Drugs and needles were mentioned with prostitution thrown in just to confuse me further. People can carry it for decades and never have one symptom. Ironically, when symptoms did appear they were exactly the same as the beginnings of ALS. How did all of this relate to me. Was it possible? How had I contracted this rare disease and when. It is also passed through nursing mothers to their babies. I had nursed two of my children. Were they infected also. Help!!! What are the odds of contracting two rare diseases in such a short time. I need an answer before my hair falls out. Still, the humor survives.
Armed with this new information we arrived for the treatment consult. Doctor, nurse and Resident were in attendance when the bomb was dropped. I couldn't help but be amused at their consternation. The doctor called the blood bank for records and the resident headed for the computer to acquaint himself with this new piece of information. A few minutes later after signing papers for release information I was rushed to the lab for repeat testing for HTLV. The results would not be available for several days. In the meantime I would go home and relax. Relax???
Yet another appointment was made at which time I was thoroughly retested. Nerve and muscle tests were repeated in all four extremities and a spinal tap was administered. I was poked and probed endlessly and was glad for the four hour period of lying flat so as not to get a spinal headache. I needed the rest.
Now the ball was rolling. Receiving a diagnosis of HLTV would mean a reprieve of the death sentence. The weakness would travel no further than my legs. There were other effects but death within a few years was not among them.
I had hope, I owned hope, and could not, would not be denied hope. My kindly, gentle doctor appeared followed by the troops. Again he held my hands and said a conclusion could not be reached. I held back tears and held on to hope. It was decided I would visit the University of Pennsylvania and have yet another consultation with the head of the ALS division. A very renowned physician would see me and try to give a definitive diagnosis. I was duly dismissed, with hope, and sent on my way home.
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