When I was asked if I would be interested in becoming a BAMS Hero, my initial reaction was one of self pride. I was honored, of course, to be asked, but I have to admit that I liked the idea of being recognized. That is until I just happened to rent a movie called Emmanuel's Gift. It is the documentary of a severely disabled man who rode his bike across the country of Ghana ... with one leg. He wanted to bring recognition to the plight of the disabled in his homeland. That is a real hero! I went to bed ashamed to even think that I am even the least bit worthy of being associated with the word "hero." But what is a hero? A hero is one who inspires others.
With that being said, I realize that I have the opportunity here to offer hope to those newly diagnosed with Multiple Sclerosis. I also realize that those who are healthy sometimes are inspired by the stories of someone living with a chronic and progressive disease. Each of us has the opportunity to give back to society. What follows are some of the things I have learned and my experiences of having lived with this illness for over a decade.
In June of 1994, life was great. Kendrick had just been born, I had a decent job working for a construction company, I was married to a great wife of four years, and I was training to run my second marathon. Jackie was in Birmingham with Kendrick visiting her parents. I had just gone for a 5 mile run and was starting to notice some tingling in my right leg. It felt kind of like when you run too far and your feet go numb from pounding the pavement. I wasn't really concerned, but Jackie, the registered nurse, was. I remember sitting on the couch talking to her about it and she sounded scared.
A few weeks later we went to see our family doctor. He then referred us on to the neurologist. He did several tests, never once mentioning what he thought it might be. I had an MRI, a spinal tap, and a few other tests I can't remember; I started feeling like lab rat in a science class. His diagnosis at the time ... nothing.
Jump to 1998. I was running again, not training for anything, just fighting the battle of the bulge. I was in Birmingham and had just run a few miles on Sunday morning before church. (I had also run a few miles the day before.) On the way home, I started to feel numbness and tingling on the left side of my abs. It spread up my trunk and into my back. After a few days of this we called the neurologist and he had me come in that night for an MRI. A friend of mine was there waiting for me to emerge from the little tube. Jackie was home with the kids and Brian had just flown in from Chicago, but he just wanted to offer moral support I suppose. Good friends are a true treasure.
When I went back to get the results, the doctor said that I had transverse militis. I read about this later on the Internet and it seemed to be just a precursor for MS.
Wanting a second opinion (due to my belief that I was invincible), Dad got me in to see an MS expert at Vanderbilt University Medical Center. Mom, Dad and Jackie all went with me. He did a verbal and physical exam for about 45 minutes, looked at my MRI and other test results, and came back in the room and said the following: "After looking you over and talking with you, I am going to say that you have MS. You have had two different episodes in two separate areas of your body. This alone is textbook enough to give you a diagnosis. However, I would like to do a spinal tap to look for some bands that are present in the spinal fluid of people that have MS."
Well, that was it. I sat there in shock; Mom and Jackie were crying. I still had some doubts until the spinal tap showed the results that solidified the diagnosis in my mind. I now felt that life was more fragile than it was just ten minutes before. I felt "not perfect."
The first few months were hard. I never got negative, I never blamed God. Every day I would think about it, 10-15-20 times. Each time wondering if I would be in a wheelchair or walking with a cane. I got nervous for the future of my family. I wondered if people looked at me differently. Would I be able to continue working? It was hard to come to grips with the fact that I was now "sick for life" and different.
My doctor gave me the option of either Copaxone or Betaseron. I reviewed the data and came to the simple conclusion that one caused flu-like symptoms and one did not. Such a scientific conclusion! A few weeks after the diagnosis, I started taking daily injections of Copaxone.
After being diagnosed with MS, I went through a multitude of emotions, both rational and irrational. Buying a new set of electronic drums would now be classified as an irrational decision, although at the time it was a very rational thing to do!
I have been playing the drums as an avid amateur since 4th grade. At age 10, I thought if I banged on my desk just enough during class, that my teacher would call a conference, I would explain to my parents and my teacher that if I only had a drum set I wouldn't need to bang on my desk. Well, I did get in trouble, a conference was called, I pleaded my case and I did get my first drum set. However, Dad did a little drumming of his own on my backside as well, but 30 years later, I would say it was worth the pain!
When I was diagnosed with MS, I didn't know how long I would be able to keep playing, so I rationalized that I needed to trade in the 6 piece Pearl trap set for a new Roland electronic set. Playing the drums is a great way to reduce stress and it gives me a sense of being "normal." Drumming involves all four extremities, so at some point I probably will have to stop drumming, but I am enjoying it while I can!
In 2001, I was sporting a pretty good set of love handles, courtesy of the #2 combo meal at McDonalds. I weighed the most I had ever weighed and decided I had had enough! So I lost 30 pounds and started my love affair with cycling. My first bike was a 100 lb. mountain bike. Thanks to the sympathy of my father, he gave me a new road bike just 6 days before my first MS150 in Nashville. Since that time, I have ridden in 12 MS150s, 9 triathlons, and four 100 mile challenge rides. I log about 3,000 miles annually. Having MS drives me harder. I am so appreciative for every time I can turn the cranks one more year. I made up a little phrase for myself, Carpe Pathos. It means Seize the Disease! Physical fitness is one way that I deal with having MS. I do feel that, aside from my proven drug therapy, staying physically fit has given me better overall health. While I realize that many living with multiple sclerosis experience high levels of fatigue, I would still encourage people with MS to start or continue some form of physical fitness. It may be just walking to the mailbox and back, but that little walk is important. As my father says, "Never give up!"
Another blessing to have come out of this disease is my relationship with the National Multiple Sclerosis Society. There are some really dedicated people that work so hard to help raise money to help those with MS and to help end the devastating effects of multiple sclerosis. My first year of having MS I was able to raise over $13,000. Then in the fall, people generously gave another $8,000 to sponsor me in my first MS150. People asked me how I raised so much; I smile and say "It's easy, just get MS!"
My biggest honor was being presented with the father of the year award in 2000. Good thing the kids were too young to tell the NMSS different!
My favorite MS150 was the BP Houston to Austin ride. I started training for this ride in December; I went from 192 pounds just after Christmas to just under 175 pounds for the ride. I trained inside and outside. I trained in 20 degree weather and 75 degree weather. (The ride turned out to be 92 degrees for a high on the first leg!) I logged 1,086 miles in 3 months. Having a goal makes training so much easier. The only nagging effect of my MS was that I felt a constant numbness in my left side that seems to get a little more noticeable as my body heated up.
During the training phase, I also experienced a relapse. For me, my relapses seem to be about every 3-4 years. They are minor compared to most people with MS. This time, my right foot and right side of my face went numb and were tingling. I went to see Dr. Sriram, and he said that it was most likely occurring in my brain stem and that, unless I had weakness (which I did not), he would rather not treat it with steroids. So, I waited it out for about 3 weeks and the numbness and tingling went away. I stopped riding for about a week. Having endorphins withdrawals, I decided that if there was no weakness, than I would not let it come between me and my goal: riding the BP Houston to Austin MS150.
Traveling through the little towns in Texas was really fun. There was one guy, dressed in overalls, standing beside his wife and his John Deere that was serenading us with his fiddle and sporting some very white dentures! Each little town we rode through gave us a warm Texas welcome. Some, according to the signs, only have populations of about 300 or less people. Did I mention that it was 92 degrees that day! As we were riding, one lady I came upon was complaining about the heat. Another said it was 92 degrees. "Thanks, but I really didn't need to know that!" I joked with her. Whenever I get overheated, I put ice in my skull cap; it seems to help cool my body temp and my brain and limbs seem to respond well.
So at 11:05 p.m. that night, I laid my weary head to rest after a shuttle bus ride, a 180-mile bicycle ride, a 3 ½ hour bus ride back to Houston, a 1 ½ hour rental car ride, a 2 hour plane ride and a 30 minute commute back to my driveway, my adventure was over. That is a great memory I will cherish for a long time to come.
One reason I have been able to weather this storm is my life is due to my strong family. The word "family" has so many meanings. My wife is my partner and caregiver. Jackie has given me hundreds of shots in areas I cannot reach. She also gives me shots of encouragement to help me keep fighting this disease. Mostly, she puts up with my obsession with cycling! Kendrick, Clark and Anna know I have MS; I hope they know MS doesn't have me. I hope someday this disease will be cured. My son once asked me, "Hey dad, remember when you had MS?" As long as I live, I will never forget that innocent little comment.
My extended family consisting of my parents and my 4 brothers having been by my side every year as we ride the MS150 here in Nashville. They are another pillar of strength in my life. I am also blessed to have such wonderful in-laws that encourage me as well. They have been so good to me. And last, but not least, my church family has provided emotional and spiritual support from diagnosis to a decade of life with MS. As I said, family has so many meanings!
Just today I was telling someone that I often consider my disease a blessing in my life. That statement usually gets some odds looks. What I mean is that MS has given me the opportunity to try and make the most of every day. Each year I think, "What more can I do to challenge myself physically." I look for more ways to serve others. Each of us have a path in life, it's up to us to choose how we plan to travel it.