Welcome to Michael's Nightmare: My bout with MS
THE PURPOSE OF THIS RAMBLING COLLECTION OF THOUGHTS
Baby Boomer. Mickey Mouse Club. Annette Funicello. Eisenhower. Korean War. The 60'S. John F. Kennedy assassinated. The Beatles. The Rolling Stones. The Four Seasons. The Monkey's. Boy scouts. Staff infection. Texas shootings. Vietnam war. '68 Democratic Convention. Martin Luther King assassinated. Bobby Kennedy shot. Mark Rubin's student rebellion at Cornell. Tension at the dinner table. '69 high school graduation. Parent riots in the stands over Vietnam. Graduate dies in motorcycle crash on way to party. Passenger severally injured. Family trip to Norway. Neil Armstrong on the moon while I was in Bergen, Norway. Rolling stones in concert. Woodstock in New York. Coming home to Nassau Community College. New ideas. Professors ask questions about the world changing around us. Seeing the Graduate and Easy Rider. Driving my fathers Super Sport. Buying a surfboard. Buying a Yamaha motorcycle. Falling in love for the first time. Going to a Rolling stones concert with her. Buying a dozen roses for her. Breaking up while going through personal turmoil. Found solace with Buffalo Springfield lyrics "there's something happening' hear…it ain't exactly clear."
While I was finishing up college in Nassau and going out as much possible, I wasn't aware that I was just short of having enough credits to officially graduate. I decided to transfer to a state university that specialized in teaching. My best friend introduced this school to me; he told me they had lots of parties. He had one girlfriend who had a lava lamp that kept him busy for hours. I drove my 64 and a half convertible Mustang for a few visits, and I was convinced the transfer was going to be a good thing to do. It finally took place in January of '72. Boy my eyes were opened! My parents left my supplies and me in my dorm room as snow fell by the window. I went to a town bar to meet up with my friend and when I got there he decided he was going back to the campus with his girlfriend. The realization that I no longer had the job or my friend's that I did at home finally sunk in and my car sat at the curb at my family home.
By May of `72 my car was with me at college. I had found new friends and I met a girl who intrigued me (later to be the love of my life Judy.) When I left the college for summer vacation I wasn't sure if I was coming back, after all the friend who introduced me to the college was leaving to go home. I spent that break torturing myself to transfer or not to transfer. With school just about to begin I decided at the last minute to stow my surf bored and jumped into my car to drive upstate were I was actually greeted with cheers. I knew I was home. The last two years I attended college I became totally involved with schoolwork and falling in love with Judy. In June of 1973 I graduated college amidst Richard Nixon being called "Tricky Dick" and the supposed winding down of the Vietnam War. China was becoming the focus of the U.S. and with tension growing in the Middle East the thoughts of nuclear war were creeping closer to the horizon. I knew I had a lot of topics to explore in my new career as a social studies teacher. Now I had to find a job. Judy had another year to graduate and I contemplated either working for a moving company or moving to Alaska to work on the oil-pipeline. I was at my wit's end as to what to do just as a family friend suggested I take the empty position at their school and I jumped at the chance. I was going to be working at my old junior high school!
I totally immersed myself in carrying out the ideas I learned in college. I found out the hard way that there was a tremendous amount of pressure involved in doing a fine job as well as getting to know the kids. I can still remember the embarrassment of my first parent teacher conference. I noticed, as this mother's eyes were beginning to tear, I was talking about the wrong kid. Besides the hours that I was spending on the job the coffee I was drinking and the little food I was eating, I added to the pressure by attending Hofstra for my masters degree. I added even more by getting three hours of sleep per night. Eventually I should have known things were going to break down but surprisingly I was never out sick. In the spring season I took on coaching the 9th grade baseball team while Richard Nixon tried to save his administration from the negative attention of Watergate to seemingly positive action in China. All my students cared about were Vinny Barbarino and the Sweat Hogs. I tried to expand their worldly vision to counteract the television.
We started projects to raise public awareness and funds by involving ourselves to the likes of recycling newspapers for donation money to fight famine in the Sahael of Africa. I turned the students focus towards Israel while they defended themselves during the Yom Kippur War. The newest chapter of my life was settling comfortably as I became hypnotized with my compassion for the world outside of my own ego. The next year the teachers union decided to go on strike after years of broken commitments hadn't been met. I was forced to come back to face reality in my immediate world, as a non-tenured teacher I was expected to carry on as normal and cross the line, but of course I didn't. I watched my fellow teachers act out in frustration by swearing towards the strikebreakers and refusing friendly overtures from the administration. I wasn't surprised when I was excessed at the end of that school year.
The following year was filled with subbing, tutoring, and fulfilling the requirements for my masters' degree. Judy was back home from school, Tricky Dick resigned, South Vietnam was collapsing, and even though I landed a permanent substitute position I took off to California. I really needed time to clear my head. I traveled cross-country with a friend in his VW van and turned south when we hit Portland, Oregon. I had an adventure of a lifetime experiencing the many wonders of the West, but I still couldn't shake the thought of returning home to Judy. Late in the summer when I returned, I found an advertisement for a teaching position that was in area I spent my childhood summers. I arrived at the school to personally drop off my resume to the principal's secretary. She adorned her desk with the Gemini symbol and I luckily made a quick connection on a comment I made about my being on the cusp of Gemini and Cancer. I was magically inside his office on an impromptu interview and little did I know sitting in the office was also the man who became my future partner in crime, Kevin.
With the Universe seemingly working to my advantage, including Judy and I renewing our commitment for one another, she accompanied me to a follow up eye exam. On the recommendation of my Optimologist I participated in an examination after I had told her I was having trouble reading license plates and maps. This procedure was not explained to me, leaving me bewildered as I lay by myself on a table after a student had attached a clip to my eyelid to keep it from closing. The uncomfortable thoughts running through my head along with being by myself in the exam room prompted me to get the hell out of there and as soon as they removed that clip I was. I often wonder that if I stayed to finish the testing if the doctor could have detected any sign of MS and how it could have changed the rest of my life at that time. If I knew that I had MS at that time I probably would not have gotten married or pursued my dreams of teaching.
Judy and I walked away and we proceeded to get ready for my new school year, forgetting about doctors' visits along the way. There was no preparing for that truly wonderful experience. Making the shift from my last district of warring teachers pouring coffee on cars to being met with an absurd amount of supplies for my carpeted classroom was unfathomable. I had to make many mental alterations to fit the progressive criteria and positive reinforcements of my new district. From failure notices to progress reports and weekend getaways with the students of my house group, at times my colleagues and I felt as if the inmates were running the asylum. Even though the heir of the school appeared to be a mad house of freedom at times, a new hire like me learned immense amounts of new ideas from people like my partner. It delighted me to know that I was not only involved but I was also warmly accepted into this network of highly influential minds.
- IT CAN'T GET ANY BETTER THAN THIS
- REALITY, WHAT A CONCEPT
- WHEN TO ASK FOR HELP
- NEVER SAY "IT CAN'T GET WORSE"
- LEARN TO APPRECIATE
- LOSING CONTROL
- IT'S THEM NOT ME
- IT'S HARD TO MAINTAIN CONTROL AS THE WORLD COLLAPSES AROUND YOU
- HOW MUCH I WANT TO HOLD HER IN MY ARMS
I. It Can't Get Any Better Than This —1985
Racing on the Long Island Sound, birds' overhead, sandy beaches to our right, the early afternoon sun over our heads reflecting glare off of the water surrounding us, I shut the engine off. The tri-hull speedboat settled in the water slowly curving north towards Connecticut, insight of a 34-foot cabin cruiser loaded with students laying on the decks of the boat soaking up the sun as it headed to Mount Sinai. I looked at my colleague Kevin and yelled at the top of my lungs "It can't get any better than this," and it couldn't.
This was a class that my colleague and I started at our high school. Teachers and students were
involved in a summer project foraging off of the nature of Long Island. One week was spent with the faculty and the next was spent with the students. While the faculty received in-service credit, my partner and I were being paid instruct as well. I always found it interesting that our program was so similar to one of televisions most well received programs that were constructed around a group of people trying to survive off the environment provided for them. This course was only part of a tidal wave of ideas that slowly but surely engulfed us.
Many of the summer survival students participated in our newly formed Global Club. We celebrated Global Day's where we invited the world to come to our school and share their cultures and histories with us. The uninhibited behavior that our district encouraged allowed us great opportunities to gain reputations within New York City's international community. We took the students on visits to varied missions of the United Nations and asked if they would come to our school. Sometimes our excitement became a bit over zealous in our offerings of demonstrations for Global Day to our less than 300 9th graders. We avoided insulting a number of different dance groups by distracting them with a glare of spotlights, preventing them from seeing a dark audience of about 20 students.
One particular year a student extended a written invitation to Madame Song, the wife of the former Nationalist leader of China Chiang Kai Shek. The request caught the attention of the editor of Newsday making our presence known to the greater New York area. Students also invited Japanese internment camp survivors, representatives from Israel, and the P.L.O. at Global Day. We were met with hostile reactions from government representatives who greatly disagreed with our diverse approaches to education. Once while we visited the Pakistani Mission, Kevin and I were trapped in the elevator with our students taking direction from Pakistani personnel to relax while they moved us to the next floor. It truly gave us an understanding of communication between cultures.
Kevin and I spoke in front of the U.N. about special presentations for high school teachers, wrote questions for the New York State regent's exams, and spoke at the council meetings for New York State Social Studies conferences. Within the five years after claiming, "life couldn't get any better than this" I was struck with the most unbelievable back pain as well as cancer, visual problems, and MS. It's hard to believe that while all of these great things were happening with our careers, my body and my partner were experiencing an imbalance.
We still kept our Global endeavors alive though. We had asked everyone in our community to donate their useless keys for our newest undertaking; a mobile art piece dedicated to the victims of Apartheid. Each key would represent hundreds of prisoners in South Africa. The structure was built of three sets of four-foot long pipe connected by clear nylon fishing lines and loaded with hundreds of keys on each of them. I will never forget the vivid image in my mind. The wind created from the bustling of students moved through the commons, triggering the clanking of keys as the mobile slowly rotated. Hopefully this created an impact on the students reminding them of the people suffering in South Africa from the results of Apartheid.
In 1988 we continued to create other artwork with the keys left over from the mobile and sent it to the South African mission. Our symbolic expression of our disgust impressed the anti-Apartheid movement within the U.N. so much so that a representative was sent to our school to show their appreciation. The representative spoke with gratitude from a balcony over looking the common area, the mobile in his vision. In 1990 that same representative invited Kevin and I to a private event celebrating Nelson Mandela's release from prison. Sadly only Kevin was able to attend because the MS had started to take a noticed effect on me.
II. "Reality, What a Concept"
"Reality, what a concept" is a quote I attribute to Robin Williams. It seemed that every time I thought I had a grip on "reality" something would happen to change the direction of my life. During the summer vacation of 1988 I decided to take a trip to Trout Lake in upstate New York with my family and Kevin and his family. On the drive up to the campgrounds my oldest son Chris was showing signs of a mystery illness. We decided to stay after Chris was showing some signs of improvement like having a spitting match with Kevin's son. During the night the sickness seemed to grow worse though. We had taken Chris to the local doctor who informed us that he had caught Chicken Pox. The doctor didn't see a problem with us carrying on with our camping plans since he believed Chris was no longer contagious. The doctor recommended for Judy and I to keep him from over exerting himself for the remainder of the visit.
When we told our fellow travelers, they thought differently than the doctor. Kevin and his wife had believed there was a strong chance that Chris was still contagious and were concerned for their young family as well as his Mother-in-law who had a terrible bout of Shingles in the past. I later learned that the virus that causes both Chicken Pox and Shingles lays dormant in the body for many years. For years after learning that fact a nagging in the back of my mind had convinced me that same virus might have connected me with MS. Sadly the trip was curtailed as we decided to head home.
A few weeks later Judy and I tried to salvage the rest of the time we had left of summer vacation by going to Sesame Place in Pennsylvania. After the wonderful day we spent there, we found our younger son Jon showing the same signs of Chicken Pox like Chris did earlier that season. I spent the rest of the summer in the pool with Chris from morning to night. The school year of '88 to '89 was a time of peculiarity. Strange events were a constant and only left me wondering where the connections lay. The vision of my left eye was degrading at an unusual rate and at times my right eye seemed to falter as well. My thinking process was strained and when '89 arrived I knew something was really up. I even experienced difficulties with walking. Both of my ankles had seemed to lose their strength and stability, one problem that I thought had been resolved by physical therapy. In March of '89 I was walking in the dark as a parade cars drove passed me in the parking lot. I had begun to sway with each step towards my car; I stopped and waited for the parade to pass by me before I got in. As I sat in the drivers seat I looked at myself in the rearview mirror and thought "What the hell is wrong me, do I have MS?"
During June of '89 I was experiencing blurry vision while reading a paperback and again when I was proctoring the Regents exam. I eventually convinced myself that all of my problems were do to the stresses and responsibilities that go along with the end of the year. I had dug myself in even deeper by devoting my extra time to creating optical illusions of different colored or labeled variations of the same exact finals. Kevin also created different copies of his exams, as we were both dedicated to preventing the students from the idea of cheating. Looking back I now realize that we were losing touch with the students needs, becoming self-absorbed in our own creatures of distraction.
That summer was the summer of changes. It was the summer that our boat was deemed an embarrassment to the community. It was believed to be an example of parading wealth that we didn't really have while other districts on Long Island were floundering. To fulfill the faculty and students needs for connection and the greening of our community, the idea of gleaning was introduced to replace the summer foraging project. We also toured county sewage and recycling plants to keep our purpose of positive community involvement. I developed discomfort in my ankles and low back that prompted me to visit with a local chiropractor close to the end of the summer. At the conclusion of his evaluation he had asked if I was aware of the fact that I had been swaying. He said, "I'd like you to go for an MRI" and I responded, "Why do I need to go for an MRI?" He then told me that I might be experiencing something as serious as MS to which I replied "Bingo! Sorry I'm going to Disney World. I'll deal with that when I get back."
Disney World was great. I was able to rent a 3-wheeled motor scooter to travel around the park. The thing I found most shocking in the handi-capped world was the fact that I was warned to be protective of the machine because it was known that people would steel handicapped devices and take advantage of cutting lines and storing their souvenirs. I was upset at the fact that people were capable of being like this. After our vacation to Disney World, my family and I went on a cruise to the Bahamas. I was excited to see the scooter waiting for me in my cabin, but of course I had to prove my independence by walking to dinner. As I began my stroll I proceeded to fall in the hallway of the ship and I admittedly found myself more dependent on the scooter to get around then I would have liked to be. It forced me to fully comprehend my need for dependence; the fight for my simple human freedoms was slowly receding.
We began on our return home with school looming on the horizon. We had already scheduled a trip to the eye doctor; that visit will always remain in my mind as she turned from the examination machine to her desk. She opened a file and said to me " Michael what is your medical coverage like? I want you to make an appointment to see a neurologist." I saw the neurologist shortly after school started who then scheduled me for an MRI and a spinal tap. It was confirmed that I had MS. The first thing Judy and I did was go to the library. The latest studies we had found were printed in the 70's. Twenty years had already passed. We checked out our books and returned home; Judy went into the living room with her stack, I into the dining room with mine. I remember as we were both reading I could hear the sounds of sniffling coming from where Judy was as my eyes blurred the tears fell on my page. The disease was to become more debilitating in the prime of your life as my book stated, you progress from chair to bed to death. "Enough of this," I said as I closed the book, "I've got work to do." Judy replied, "Yeah, I do too."
Months after I was diagnosed I tended to bury myself in the most comfortable and safe place I knew of, my schoolwork. Kevin and I went to a Global Studies conference in April. He was wonderful at keeping my spirits up and my mind distracted from the obvious events of my future. Kevin kept me involved by taking me to conferences and even though the purpose was to keep my mind going, my body had different plans. Amongst everything else going on, by the middle of the month I was diagnosed and treated for testicular cancer. I was out from school for eleven days thus breaking my perfect attendance for 13 years.
When I returned to work at the end of April, I ran into two of my teacher friends who stopped me as I reached the bottom of the stairs. Knowing what I had been through, the men looked at me with serious concern in their eyes. "Mike, how are you doing?" they said to me. I looked back at them and said, "I'm ten pounds lighter. I wouldn't recommend losing weight this way." After a good laugh the sounds echoed up the hallway, I headed into my classroom and they continued up the stairs.
I spoke to my cousin Larry after I was diagnosed to tell him the news. Larry was a recovering alcoholic with a heavy Brooklynese accent. Later in life he actually became my uncle when he married my Aunt who was his babysitter as a child. During our conversation I had said to him that it couldn't get any worse than this. Larry had been through Alcoholics Anonymous and explained to me that whenever someone was to say that in the program another member would tell them "tell that to God and give him a laugh." If there is one thing I've learned, it can always get worse.
Thankfully panic comes in spurts, other wise it would drive me insane. The compartmentalization of the incidents in my brain helps sort out feelings of utter terror into a sort of rational approach to surviving. I had noticed one morning on my drive to school I was having difficulty moving my right foot from the gas to the brake pedal. While doing the Xerox copies for the day I told my buddy Mike about what happened and we both agreed it was a good idea for him to follow me home. I almost went through a red light at an intersection again that afternoon. Once friends and colleagues found out about the latest installment of the progression, they were only too happy to offer their help getting me from A to B. Technology came to my aide again when Judy found a device that would enable hand controls to be used for stopping and going once installed in the van. The saying "time is of the essence" couldn't express my feelings any better then. I was becoming aware that the trip to Yellowstone I always wanted to go on with my boys needed to happen that summer. The experience truly defined family love and the beauty of this land for my family and myself.
By late '93 I found walking to be unstable by the time of the final exams. The school had been talking of covering the whole gym floor with tarps in order to prevent scuffs from the hundreds of desks and chairs. To avoid any further injuries I decided to prevent myself from tripping by renting a scooter. The machine also assisted me to quickly check on the kids who had never experienced the stresses of taking a final exam in such a large setting. The rental proved to be so helpful that I bought one of my own. It seemed to relax some of the children who had felt uneasiness towards the disease. I would even allow the kids to autograph the fenders with magic markers and I rewarded some of them with rides up and down the hallway. Eventually I created a holder for my five-foot wooden staff. I have to admit I felt like Moses when I used the massive support to step away from the scooter. No matter how many ways I tried to put up with the disease I was constantly being reminded of why they call it progressive MS. It just wouldn't stop. One day I found myself lying on the floor of the seminar room, luckily after school hours, instead of in the bathroom where I needed to be. I had managed to push the door shut with my foot and had to make due by peeing into a plastic canister. I was able to stand up after I rested for a while and emptied the canister out of the window into the bushes before anyone could have found me. It seemed there were more cracks in the foundation of my independence than I thought.
The day finally came for the salesman to come drop off my first electric wheelchair. The optional stand mode had a green light that told you when everything was operational. Only a Treki can truly understand what I went through shortly after the salesman had spent hours teaching me about the machine. I sat in the chair realizing that they were salesmen not friends as my eyes left the window and stared at the green light on my control panel. I realized I had become Captain Pike on my own long journey and I wanted to call out for Spock to save me. In my mind all I could think about was those damn library books talking about the progress from chair to bed to death. Was the chair going to be another step closer to my demise?
There was an incident where I had fallen down while trying to walk up a ramp in my backyard eleven years ago and I ended up crawling down the ramp into a shady corner as the sun became too intense for me to handle. I waited for my fifteen year old to come home from school to help pick me up. Another was when I decided to go racing around on my front lawn and went flying into Judy's garden. I stayed on my scooter until she discovered me and called out to the boys to open the doors. In unison they exclaimed, "What did he get himself into now?" They helped bring my new power wheelchair to the front of the house and transferred me from the scooter to the wheelchair.