Tuesday, November 17, 2009

My History with MS Part One


I am not going to moan about my childhood. Overall, it was great. I was a chubby little kid that did not like to be made fun of. When I was 12 years old I saw the Mr. Olympia contest on Wide World of Sports. That is where everything began. I was suddenly very excited. That summer, Johnny Bennett gave me a bench and the following Christmas I received a set of weights. My life was in my hands and control. I was highly motivated.

I didn’t know anything about working out. All I had was an instruction sheet that came with my concrete filled weights. I followed the instructions meticulously and after a few months, I started to see results. I thought they were results anyway. People in my junior high school saw my arms started to grow and everyone wanted to arm wrestle me. I was still a chubby kid, but everybody suddenly wanted to be my friend and I was motivated. I now had goals.

I played football in junior high school and knew that I wanted to play in high school. I always played sports and girls liked athletes. Near the end of my ninth grade (15 years old), my transition to high school began with Spring Football Practice at Hamden High School.. We only had one week of it for ninth graders, but it was a chance to show the coach what I could do. How could I be intimidated by people in my own grade? I could not and was not. I was very motivated to kick some butt since kids from the other junior high school in my town would be there. They were still a massive rival, none of them were my friends yet and I wanted to do some damage. I did. The coaches had expectations for me come the fall.

Triple sessions began in late August. It was incredibly hot and humid. I thought I was going to die. It wasn’t the first triple session day that was hardest either, it was the second. That is the day when you are unbelievably sore and tired. None of us knew it, but a transformation was taking place in our minds and bodies. As we got through the week, we started to believe that we could make it to the end. On Saturday, we had a scrimmage. That was our first opportunity to hit someone other then our NEW friends.

The following Wednesday was the first day of school. I did not realize it but triple sessions caused me to lose pretty much all of my chubbiness and I had a new set of large Traps. I couldn’t believe it. Suddenly, girls were interested in me. I was interested right back. Football had some of the greatest and worst moments of my short life. None of my friends could ever say differently about them.

It is now 29 years since I graduated from high school. Some of my best friends from back then are my best friend’s now. When we see each other now, it’s like it was yesterday. Nothing is different – Which Is Great!

Now for the greatest and worst parts Of the rest of my life.

After graduating from high school, I went to Boston College in the fall of 1980. It’s a very strange transition again, going from big man on campus to nothing/no one. I knew I could blast through that wall. I just had to figure out how. First semester freshman year was tough. I did not do as well as I did in high school and everyone seemed smarter than me. When that semester ended, I spent a lot of time thinking about the rest of my days in college. I could do it and do it much better than I did during first semester I also spent a lot of time during Christmas break drinking with my high school friends.

During Christmas break I went over every note, exam and chapter from my chemistry, physics and calculus classes. When I got back to school, I was rested and very ready. My apprehension was pretty much gone and it was time to make Boston College aware of what and who they were dealing with. I studied and studied, rewrote my notes every day and asked a lot of questions. Professors only slightly intimidated me. I was scoring big on all of my exams.

Back to first semester. One day this guy in my dorm named Kurt saw me and said “hey, you got some big arms”. I looked at him with disdain and said thanks. In my mind I actually said “thanks, tell me something I don’t already know”. Kurt did not know it, but I admired his size. He was the big one. A bit of a block without shape but, he was very big and strong. I was happy that he thought what he did. Kurt did not live on my floor. I was now totally out of shape because the Sports Complex (plex) had been closed for a long time for renovations. Where could I lift weights? Luckily, Kurt knew.

We would hitchhike to the YMCA in Watertown, Massachusetts. I was finally lifting again, feeling bigger again and I had a friend that thought like me. Actually, he was bigger, stronger and more adept at finding a place like this. I could learn something from him. Kurt also made me laugh and had these same taste in music. Loud and Hard.

College went on and on. We were best friends and roommates during our final two years. We used to sneak into the football player weight room to work out. It was easier than hitchhiking. Suddenly, the trainers for the athletes gave us both jobs as strength training coaches. We didn’t do anything, we just lifted and grew. We were extremely happy.

Early in my senior year I was accepted into the Navy Nuclear Power Program. After graduation, I would go to The Officer Candidate School in Newport, Rhode Island. I was going to be a submariner.

Officer Candidate School was not what I expected. I got there in the absolute best shape of my life. I saw the movie, An Officer and a Gentleman many times and I was not going to be caught off guard. Well, I was. The physical aspect of OCS was not really there. No obstacle course, no Dover Dunker– just morning runs and Saturday morning Mandatory Fun. During my first liberty, I was walking down the street with my ice cream suit on and a car load of hot looking girls drove up to me, pause and yelled SQUID! Couple that with the fact that we were in Newport and I could hear all of the fun being had down in the wharf and the heat. My focus did not seem to be with me. I left OCS a little over one month after getting their. Looking back, I probably should have given it more time. I just couldn’t miss another workout.

Later that summer, I didn’t have a job for the fall or any prospects. And this was definitely not me. I was always squared away. I was now bartending at a resort called Holiday Hill. Technicon was having their company picnic. I spoke to a few people about what they did and took some advice. I paid a lot of attention to the personnel manager. He gave me his business card and told me to attach it to my resume. 10 days later I had an interview.

Being freshly out of the Navy, and having no time to buy a suit, I borrowed one from Kurt. Now, Kurt was larger than me and had a much wider waist so, I was not totally comfortable doing the interview. Brian Taylor, my interviewer was very understanding and they did call me back for a second interview. This time, I had a suit. The second interview went very well and I had a job offer the next day.

My parents house was exactly 65 miles away from Technicon. It would be tough, but in 6-9 months I would have a sales territory and that issue would be gone. I got into the grind of commuting, working out, little bits of going out on the weekends. I was having a great time. I met a lot of new people at work and at the gym. Most of them were helpful.

OK -- --Now, being a grown up slowly and forcefully kicks in.

Right around December, 1984 I started to feel a little bit different. Not bad, not better just different. I had a slight tingling sensation in my legs. I notice that I gained a little weight and wanted to lose it to look my best for traveling. Technicon paid for my lunches because I was training customers. I was always into nutrition and lost some weight. Correctly, or so I thought. I noticed that my strength was diminishing. I squatted 600 pounds early in December 1984 and late in December, that wasn’t possible. I also noticed that my bench press was going through the floor in a hurry. I didn’t have a feeling of strength running through my body anymore..There was some type of disconnect. Very strange. I knew what the problem was, I just lost some weight and my body was adjusting to that. Probably only minutely correct.

Well, over the next couple of months I lost more strength. What was going on? I just didn’t know and didn’t want anyone else to notice.

Line in the Sand Day

Late February/early March 1985. We were playing a quick game of basketball. I slipped and tore the ligaments in my ankle. I just kept moving forward. Nothing was going to stop me from being successful. I went to the Pittsburgh Conference held in New Orleans during late March. It wasn’t much fun to stand up for eight hours with a cast on, but I did it. New Orleans was fantastic. Great food. I worked out at the YMCA and it was a scary place. My attitude, cocky or whatever made me feel right at home.

After 6-8 weeks in a cast, it was removed. Actually, I removed it myself with a branch cutter. I did that because I had a date and my foot really smelled.
Guess what, I never walked perfectly again. Was it my ankle just taking its time getting strong again? Maybe, I needed a little comeuppance. Was it something else? People noticed and asked me about things a lot. I started to get self-conscious and would always change the subject. Who cares what’s wrong, I can still walk – RIGHT?

I was asked to spend a lot of time in Wisconsin and Minnesota to sell to the butter and cheese manufacturers. I was very excited about going. I would be spending April, May and part of June out there. It was beautiful. I sold a little bit, saw the sites and came home every weekend. Strange company policy. I was eating correctly, my ankle healed and I was ready for the next stage of my career.

Late June, 1985 I moved to Cherry Hill, New Jersey. I had a great apartment. There were three other units, two of which were occupied. The first, by a couple that were reporters for the Philadelphia Inquirer and the second with 2 girls that just graduated from the University of Michigan.

Punch in the Face Day –
I was not gaining any strength and I was losing some coordination. I thought the orthopedic that put the cast on my ankle must have screwed up and screwed me up. I went to an orthopedic in New Jersey. He did all of these tests and told me that there was no screw up. He referred me to a neurologist. The neurologist recommended that I get an MRI done to get a better look at things. I had another appointment when the results were in the doctor’s hands. The doctor told me that I had MS, Multiple Sclerosis. What the hell is that? He told me that it is a neurological disorder where the body eats the myelin sheath off of the nerves. Those points scar over causing a disruption in the neurological flow. This results in my loss of coordination and strength. Do you have a pill that will cure me? No, one does not exist. In fact, nothing exists. I wanted a second opinion. That appointment was made for me at the University of Pennsylvania Medical Center. I was told the exact same things. This time however in a much colder way. I left without paying.

What am I going to do? I need to get out of New Jersey to somewhere safe.

One day I was working on the road when my seemingly annual flu came to call. I went home and got into bed shivering. I went to sleep and about eight o’clock that night I woke up sweating. Nothing new right? Well, I could not move my legs. I was incredibly scared and crawled out of bed dragging myself across the floor to my office. I pulled down the telephone and called for an ambulance. That was the only thing I thought I could do. I was taken to the hospital and given several glasses of water. Within a couple of minutes, I was perfectly fine. I did not feel sick and I could walk. The couple from upstairs came to the hospital when they saw the ambulance. They brought me home.

I am not going to spend a lot of time here, but I was alone in a different state. I did not know the best ways to manage a sales territory. I did not have all of the skills required-Yet. Then one day my telephone rang. It was a headhunter who told me about Leybold Heraeus and their Inficon Division. They sold mass spectrometer’s. I took a research course in college and we built one. Great fit. I got the job and moved back home, but into an apartment. Most of all of my friends and family would be closer.

My job at Inficon was great. I was selling mass spectrometer, helium leak detectors and vacuum gauges primarily to IBM. It was a great fit and I was very successful at it. One problem, IBM is a massive facility in East Fishkill and Yorktown Heights, New York. Could my legs and coordination deal with the walking? I believe that I trained all of my adult life for the war that was in front me. I was ready for the battle.

Battle I did. I was very successful. My legs started to really bother me. Meaning, walking was very difficult. I had to urinate frequently. Finding a bathroom at a convenient time while at a customer site is very often difficult. I was not an office person. I needed to be on the road and with customers. I felt like it was my calling to troubleshoot and solve problems.

I was working with a neurologist at Yale. The latest thing was a blasting of Cytoxan, chemotherapy. I thought I would be cured so, I did it. Once I got in my hospital room, I was overcome with fear and apprehension. Wouldn’t you be? I looked out the window, gripped my crucifix and said, “God, if I ever needed you, I need you right now! Please help”. He Did. Still looking out the window I suddenly felt a tap on my shoulder and it was a priest asking me if I would like to be blessed. Yes, yes yes yes I do. Kind of a freaky moment, but it did happen.

They came to my room and did a spinal tap. It actually did not hurt that much. A few minutes later, a large nurse came in my room and told me they had to insert a catheter. Sticking something inside my private parts was not going to happen if I had anything to do with it. I would not let her and even went so far as to give her my express authorization not to. My doctor came in the room and yelled at me and told me that it was not an option because they did not want any Cytoxan to take residence in my body. It was that toxic.

Well, the catheter went in and the pain was incredible. Not a day goes by where I don’t think about the Catheter. If someone is going to punch you in the stomach, you would tense up prior to that punch. With a catheter, never do that – NEVER DO THAT. About 10 minutes after the insertion, my nurse returned and told me that they inserted a short-term catheter instead of a long-term catheter and would have to remove and replace it. Again, my authorizations to not do that was never given a second thought. After a massive amount of pain, it was done. Someone either hates me or is testing me.
This event is forever stamped into my brain and the brains of everyone I know because I never stop talking about it.

The next day rolled around and my favorite nurse, Rita came in and said that it was time to start infusing the Cytoxan. After a two hour round, I still had hair and I did not vomit. Victory! The afternoon of my third day of Cytoxan treatment, I Did threw up. It was not violent, I did not feel sick afterwards and I did not vomit again during my 10 day stay. I did a very good job of making my friends and family feel guilty that I was in the hospital with all of that terrible food. Because of that, they all brought me massive amounts of great food. I absolutely hated the hospital food, was not throwing up and needed my strength – I told them. Thanks to everyone, my hospital visit was fairly smooth.

On the last night in the hospital, I had a male nurse. He told me that it was time to remove the catheter and to make sure that I could urinate naturally. If I could not--back in it goes. It hurt a lot removing the catheter, but not nearly as much as inserting it. I found myself feeling like I was urinating all over the room. I was not and was told that that was natural. Next step – urinate. I told the nurse, no problem. Just get me a lot of cranberry juice and ice. I did not stop drinking it and sure enough the wiz began to flow. As a matter of fact it flowed for four or five days, every few minutes. I don’t know the exact reason why, it just did.

After a week of rest and relaxation, I went to the gym. I felt great and was walking perfectly. Wow, I have been cured. I was lying on my stomach doing leg curls. I was wearing a rotten old white sweatshirt when it happened. I noticed a hair on my shoulder. I touched my head and hair began to fall out. In order to minimize this embarrassment, I went to the Barber. Tony buzzed off my hair and did not charge me because there was no effort required.

All of this happened during September/October 1986. I went back to work, everyone was happy to see me and nobody mentioned my bald head. Things went quite well for a while. Funny story, while driving south on Route 7 in Wilton, Connecticut a youngster in a small pickup truck pulled out to go in my direction. He hit the rear quarter panel on the drivers side causing me to go into oncoming traffic. I had a near head-on collision. I touched myself all over to make sure that nothing was broken. I got out of the car only to see all of the rubbernecking traffic. A police officer came up to me and spoke to me like I caused the accident. The woman told them that I was not the cause at all. She did that while strapped into a gurney. Now I am extremely pissed off. I am pacing up and down Route 7. A car load of girls goes by and yells out “Nice ASS!”. Why did they say that? I put my hand on the seat of my pants and found that the force of the impact caused my pants to blast open. My nose was broken and I immediately got it looked at. Next I went back to the gym and got a new membership card. It was stupid, but funny.

Next month I felt like I did before the chemotherapy. I called my doctor and said I can’t believe this is happening. What can you do short of chemotherapy? He told me we could do a round of prednisone, a steroid. It’s not that I wanted to. I needed to. A couple of pills each day for a couple of weeks. Everything went off without issue. In fact, I was cured AGAIN!. The weights and the exercise bike were going unbelievably.

Things were going OK for a while. Prednisone never worked as well as it did the first time I used it. The side effects were still there, just not the good feelings. My doctor told me to try a round of Solumedrol. That is the liquid form of prednisone. Instead of pills, it was infused using an IV for about two hours per day for five days. Things were great again and I was cured. Dead Wrong! The first round was wonderful and further rounds were not quite as good and ultimately ineffectual. Admittedly, I did not know anything about steroids of this kind. I did not know because I read nothing about them. Because I felt like I was cured.

Stupid Stupid Stupid – all of the time.

In 1988 I began working for MKS Instruments. I was always impressed with their equipment. I would compete with them and lose very often. The reason why I left Leybold is because my manager was not managing. Alan Bird was my first manager at MKS. He and I hit it off immediately. Upper management was not confrontational. They simply wanted to help me get the order. I felt like I was at home with this company. My career flourished. I was feeling great.

Things were going well with my job. I was able to save some money and bought a boat in 1989. On one extremely hot day in 1989, all of my friends were sitting around sweating in the boat. That didn’t make sense to me. The heat has an extremely bad effect on MS. Rather than being effected, I jumped in the water and began to swim. I felt great. I felt as good as I ever did on prednisone. So, I began to swim as often as possible—like a maniac. Sometimes, I would go to the beach at Branford Point. On an extremely hot day, I would be in my car sweating and feeling incredibly bad – like moosh. I would somehow get off the wall to the sand. All I could do was to crawl to the water where I would get my good juice and feel 1000% better. That feeling is due to the coolness of the salt water as well as the buoyancy. Crawling across the sand, I felt like a baby turtle on National Geographic, struggling in the sand and reborn in the ocean. It was incredible. I found something that I could do. In the colder months I would swim at the Town Pool in North Haven near my office. I became a very good swimmer. I would go for long swims, feeling totally reborn upon their completion. The pool was great, but nothing like the ocean. No salt in the pool water. I worked with it anyway. The pool water was quite warm. I definitely did not feel like I did when I swam in the ocean, but it was still great.. This was my latest cardiovascular exercise meaning. I couldn’t walk, run or bike due to MS. This was a great something else. MS always made me improvise.

After 10 years with MKS I could not hide things any longer. Things got that much worse. One morning in 1998, I was driving up 395 to visit customers in Massachusetts. I was drinking a cup of coffee and went to put the cup in the cup holder. I accidentally put the cup on the rim. As soon as I let it go the cup fell. Everything seemed to be in slow motion. As the cup fell, I stupidly tried to catch it. I leaned over to the right and my left hand was on the steering wheel. That lean cause my left hand to move to the right which caused the car to go off the road. Well, there was much damage to the car. I was fine, but my ego was mangled again. MS did not cause this accident, stupidity did. If I was normal, I would have gotten a slap on the wrist and a major talking to from my boss. Instead, I had to go through the complete personal checking out again. In my opinion, that incident set the ball in motion. I could not stop it anymore.

November 1998, eight months after the accident came. My cell phone rang and it was my boss. He told me that they were changing my position. Once 1999 rolled around, I would be an inside salesperson, working with universities instead of the key accounts that I was handling. I asked for and was granted the ability to work out of my house

I felt like there was a bull’s-eye on my back. We never had an inside salesperson in my company. They were making an accommodation for me. The first half hour of my new job saw my ego pop up again. “I am not going to lower myself to work with these customers”, I said. Then I realized that the company was helping me and work was work. I was not going to give anyone the opportunity to look down on or speak badly of me. I initially noticed that universities were not getting the attention they needed. Yes, some were, but not all. We also were not providing the pricing level that they required. Given all of that, business was not where it should have been. I worked out the proper pricing levels, got the internal support that I needed and sat on top of these customers. I was always there for them and they knew that a telephone call or e-mail would be responded to faster than they ever were. The people covering universities would just incredibly busy.

During 1999 and 2000 things went extremely well. Because I was working out of my house, my physical issues were not there. I made the University market a market to look at again. A University customer that ordered and received great support from me would graduate one day and would always remember MKS. That would be a customer for life.

Reward Time

During the winter of 2001, overall market conditions had slowed. Because of that, I was moved to an applications engineering position. Everything I did for universities was stopped. Ultimately, when the market returned my position returned. There were changes however. I would be in sales support, instead of direct sales. This meant that I would no longer receive commissions, my great motivator and I wouldn’t be directly going after University customers. So, another change. I could not explain it. To me, my time away from direct sales, my mailing list was obliterated. Students graduate and professors move around. I was never again able to stay on things like I did. This was a supreme failure by the people above me.

Back to 2001. It was July 5 and Lesley was going shopping for the day. I thought I would roll down to the pool and work out. Not so fast. It was a very hot day so I was getting mushy. No problem, just spend the day in the water and everything will be fine. Unfortunately, my transfer from the chair to the pool lift was a failure. I ended up on the pool deck. The sun was oppressive and I could not move. I was out there for over five hours lying on my stomach with my right arm tucked under me. Nobody was around and nobody could hear me until around five o’clock. A neighbor I did not know was able to hear me, came over and called 911. That event caused another move to the down side for me. I spent every day from that point feeling extremely tight in the shoulders and I was losing my gripping strength at the gym. So much so that I would tape the bars to my right hand. Also, my strength was falling more and more every day. What happened?

Lesley was always there. She never wavered. We met on May 10, 1991. My friend Mike asked me to go out so he could meet up with Lisa. I knew her since we were little kids. I was at the end of my rope. MS is a big wall and 5 girls in a row dumped me. I was all done. Well, that night I did not care about meeting Lesley. I thought I was giving her a very good “I really don’t care” attitude. However, we were talking and talking and I thought I would give it another try. I felt good and was walking expectantly well. I asked Lisa for Lesley’s telephone number. She said she would ask and let me know.

I finally got the telephone number the following Tuesday. I did not get in until fairly late that night and decided that I would give her a call from Vermont on Wednesday. I called her and left a message. She called me back in my hotel room. We made plans for a date that Saturday. We were engaged during February 1992.

Everything was going very well. I kept putting off telling her about my condition. I told her it was my back. What a rationalization! During Memorial Day weekend 1992, we went whale watching out of Boston. It was a great, great day. Then the bottom dropped again

Lesley came over on Sunday morning. We were going to go out in my boat with my friends Joe end Leslie. Lesley went outside for a moment and came back white as a ghost Fat Diane, my upstairs tenant, told Lesley about my problems.

-- -- End of Part One –- --more to follow in a short while