Sunday, December 9, 2012

MS and Me - A Retrospective (Re-print)

As requested, I've reposted my story with a slightly larger font.  You can follow the entire book by following the links at the bottom of each chapter.  Joan

MS and Me – A Retrospective

I wake up one morning after a refreshing night’s sleep, fumble to find my glasses, stand up and walk to the bathroom for a morning shower. After dressing I joke with my sweetheart at breakfast and drive to work. I walk from the car to my desk, greeting people on the way in. I tease some guys because the Steelers had won their last football game and they are Baltimore Ravens fans. I check voice messages and e-mails, and then meet with my manager and the financial people, pouring over some challenges in the budget. I write a weekly report and draft subcontract agreements. I review new procedures for status reviews. An hour later, I am slouching in my chair. I can’t concentrate on my work and have trouble speaking and thinking clearly. When I try to walk to the printer, my leg is tingly and weak and I am unsteady so hold on to the walls to get back to my desk. I feel like heavy weights are pressing down on every part of my body and it is difficult to move or see or walk or comprehend anything that people say to me. I grab my fold-up cane that I leave in my drawer for times like this and leave work early while I can still drive. I manage to open a can of Vienna sausages to eat and, in a state of extreme exhaustion, lay down on the couch for the rest of the day and night. I’ll try life again tomorrow. Maybe it will be better.

Oh don’t worry, it’s okay. I’m used to it.

The First Attack – 1986

The year was 1986 and the US was still in the Cold War with the Warsaw Pact nations so the Russians were the bad guys. I was married and living with my husband and our dog in a duplex in Severn, Maryland, a small home with no basement but a wonderful back yard. The space shuttle Challenger had exploded in January, the worst nuclear disaster had occurred in Chernobyl, Russia, in April. Halley’s Comet was in the sky, and Reagan and Bush (Senior) were in the White House. Corey Aquino had won election in the Philippines. Top movies were Top Gun, Crocodile Dundee, Star Trek 4, and Ferris Bueller’s Day Off. 1700 people died in Cameroon from toxic gas that bubbled up from a quiet volcanic lake. A postal employee gunned down 14 employees and himself, thus starting the term “going postal” for someone about to lose control in a big way.

I had been out of the Air Force for five years and was working for RCA in Hanover, Maryland, and my desk was in the basement of a Department of Defense agency in Ft. Meade. My desk was a steel gray monstrosity jammed up against two other desks all in one row. We were so crammed in the small office that some employees had to get up out of their seats to open their drawer. I started with RCA as a computer operator working shift work on one of the first computer systems that used networked ‘mini’ computers. Mini computers, which were the size of coat closets, were new, and the idea of networking nine together to process data was a unique concept. I had moved from computer operator to configuration manager where I was responsible to ensure that the computer code was baselined, changes tracked and documented, and tested before being put on a live mission system.

One day, I felt just a little light headed. I didn’t think much about it, but it lasted for a few days. Because I worked in a Government building I was allowed to go to their medical center. I took a break one day at the urging of co-workers and ventured to the first floor med center and waited my turn to see a doctor.

Two doctors walked into my room and as they talked to each other I suddenly flashed back to Germany where I was stationed as a Czech linguist with the Air Force. I didn’t have a television so listened to Armed Forces Radio Network for entertainment. Once a week, we heard old radio shows like Mystery Theater (with “The Shadow”) and comedy shows including Burns and Allen and the "Bob and Ray-dio Show" featuring two guys who were pretty clueless and silly and very funny.

After listening to these two doctors banter for a few minutes, I was convinced that “Bob and Ray” were seeing me. With only asking me what was wrong, one looked up my nose and said, “Oh that’s your problem.” Then they started bantering again. They gave me antihistamines and sent me off scratching my head, wondering about the quality of medical treatment for the nation’s defense department employees who were keeping the US safe from those pesky Communists.

The antihistamines did not make me feel better, and the lightheadedness turned into full dizziness. Much of the next few months are fuzzy because I became so dizzy and sick, but I remember being on the phone with Mom and crying about not being able to eat. I was alone because my husband, Tom was working for the Johns Hopkins Applied Physics Lab collecting and analyzing telemetry from missile firings, and was working in Florida. Next thing I knew, Mom and Dad had driven from home in Greensburg, Pennsylvania, to stay with me. I remember Mom fixing me a sandwich with tomato, and it tasted so sweet!

I later went to a (real) doctor who referred me to a neurologist. By this time, I was in really bad shape and unable to work. I called the neurologist’s office for an appointment and the receptionist said that I couldn’t see the doctor for two months. I don’t know what I said but she replied, “Oh you sound really bad. I’ll try to get you in sooner.” I have vague memories of a CAT scan, where they injected me with some contrasting material that made me shake uncontrollably. Fortunately, Mom was there with me. No conclusive findings from the CAT scan led to an EEG. The results of the EEG were abnormal, showing that my central nervous system had gone berserk. The doctor said that either I had a virus that was attacking my CNS, or my CNS was fighting a virus. End result was a Dramamine patch that I put behind one ear.

Mom and Dad eventually went back home to Greensburg – Dad had to work and my youngest sister was still in high school. But I still could not work and ended up on disability for two months. I could not see well and I couldn’t sit up or stand. But I could lie outside on a chaise lounge and watch the birds. My neighbor would periodically check on me and bring me birdseed. I would then hang on to the fence and struggle to fill the bird feeder, then crawl back to my lawn chair and watch more birds.

Although memories from that time are jumbled, missing, or confused, I do remember Dad building a trellis. I had a tiny planter and wanted a little trellis for roses but Dad took two days to design and build a huge trellis with a shelf that spanned the entire length of the patio. It was beautiful and withstood a number of hurricanes!

I also remember lying on the couch watching TV and, because of the Chernobyl incident and the Cold War and the 41st anniversary of the bombing of Hiroshima and Nagasaki, the nation was paranoid about the Russians nuking us. There were lots of horrific nuclear holocaust movies and shows and documentaries. Watching those shows all day and not being able to stand up or go to work and spending a lot of time alone caused me to become severely depressed. I remember my husband Tom’s reaction: “Well then, just buy a gun and kill yourself now.” He had no idea how close I was to doing just that.

It was a few more months before I was able to function normally. But I did have some side effects that stayed with me for many months. I developed a tremor. Whenever I looked down at my feet I would experience a shock that ran from my neck to my feet. I had lost memories. These eventually subsided. Mostly.

One year later, Annette Funicello will start to experience MS symptoms. I won’t be paying attention, though, because I have no reason to. Or so I thought.