I Have Multiple Sclerosis, But It Does Not Define Me



By Robert Groth

The year was 1989. I was then 17, about to graduate from high school in a few months. During those last few weeks leading up to graduation, I felt like I practically held the world in my hands. I was invincible! After all, I didn’t have any problems being accepted in a special program for arts and music at St. Olaf College, as I have been playing the oboe with great success from sixth grade all through high school. It seemed to be my destiny – and at that time, my future looked so bright.

That year, I spent one of the most fantastic holidays ever with my parents, my two sisters, and my three-month-old baby brother. Shortly after Christmas, however, I realized how vulnerable and mortal I was, after all.

One morning, I woke up and could not see from my right eye. Thinking it was only because of all those late nights, I rubbed it gently at first, and then a bit more frantically – to no avail. A part of my brain dismissed it as just one of the side effects of a stressful college life, while another part was flashing the words, “brain tumor” in neon red. This fear was partly due to the recent death of one of my dad’s employees. She had brain tumor, and one of the first symptoms she had of the disease was loss of sight.

After several futile attempts of clearing my sight by turning the light on and off and alternately rubbing and opening my eyes, my father decided then and there to rush me to the optometrist. The doctor confirmed that I had indeed lost most of my eyesight in that eye and I was sent home that day with a prescription of cortisone.

The weeks that followed found me see-sawing between hope and despair. Surely this wasn’t anything permanent, I thought. I was as healthy as a horse before this happened, and never abused my body in any way. However, I couldn’t relieve the pain by pressing the eye or rubbing it, because it was originating from behind the eye. It was as if hundreds of little monkeys were stabbing the rear of my eyeball repeatedly. My doctor then told me that what I had was called “optic neuritis.”

When I didn’t get any better, I requested for an appointment at a prestigious eye clinic in Milwaukee, Wisconsin. Here, I had to undergo a battery of tests. A couple of them were the eye pressure test, conducted using a device called a tonometer, and the Visually Evoked Response Test or VER, during which EEG sensors were attached to my scalp. I had to give an extremely detailed family history, in addition to having my eyes dilated, pinned open and then having flash photos of them taken for comparison.

It was an exhausting process but I had to take it all in stride. After all, I couldn’t imagine life with deteriorating vision! I was only in college, for pete’s sake. These things happened to old people who have already lived their life to the fullest.

During one consultation, I was told that the left eye was in worse condition than the right. This revelation seemed difficult to accept, as I could see well with the left eye. I tried explaining this to them, but they were certain of their diagnosis. I no longer thought it was necessary to argue. It was my body, and I knew what I felt. Even professionals make mistakes. I prayed so fervently that all of this was just one big mistake.

At that point, I needed to transfer to the University of Wisconsin-Milwaukee as it was closer to both my home and the doctor. Funny how long-term plans suddenly change in the wake of such events. I continued to drive to and from school with a patch over one eye. There were times I really shouldn’t have driven – but what choice did I really have?

Due to the many questions I couldn’t find answers for, such as “What the heck is wrong with me?” and “Will this ever go away?” I felt like I was swimming in a raging river without a lifeline, even as my relatives and friends remained steadfast. Looking back now, I realize that it was only by God’s grace that I didn’t kill myself or anyone else on the road.

After months of getting vague answers from doctors, I was finally sent to the neurologist at the Wisconsin Medical Clinic. Again, I got to recount my family history, which by now was so rote I could recite it in my sleep. Later on, I was told to undergo an MRI – a truly enriching experience, if there ever was one.

No one really prepares you enough for your first MRI experience. Aside from having your head pinned and your limbs strapped to the imager bed that’s slid into a coffin-like chamber, you’ll also get to endure eardrum-shattering sounds (even with earplugs) for almost an hour.

Afterwards, blood samples were taken from me and I was allowed to go home. The weeks leading to my next appointment seemed like an eternity. The dreaded appointment finally came in February, during which the doctor morosely read the report: You have multiple sclerosis.

My initial reaction wasn’t shock or fear. I was relieved, in fact. Relieved that this thing had a name. Relieved that it wasn’t a brain tumor. Keep in mind, this was the early ’90s, a time when MS was not aggressively treated with medicines’. My doctor said I would need to come back in case of future episodes of blindness or blurred vision, but otherwise, I didn’t have to return. Whatever it involved, I only heard the words, “there is a possibility that your sight will return to normal and you will not need to come back.” Grabbing some brochures from the MS Society, I went home that day full of hope.

The doctor’s prediction came true later when I was finally told that my sight had reverted back to 20/20. Again, I felt the shroud of invincibility enveloping me. And because I felt strong and impregnable, I wouldn’t again ask for help for the next eleven years, despite recurring episodes of tingling in my hands and feet. Compared to the loss of sight, these “tinglings” were minor inconveniences. There were other signs of MS, but all of them were ignored as well. My neurologist told me once that I may never have to see him again, and that was exactly my intention.

I graduated in 1993 with a bachelor’s degree in Accounting, and started working as an accountant in my father’s CPA firm. Two years later, I married Christine whom I met at UW-Milwaukee. Despite her mother’s dire warnings that she might not be able to handle this “invisible” disease I was diagnosed with, we made that decision to seal our love for each other and nothing – not even the sporadic MS symptoms – could stop us from starting our life together.

On my 24th birthday, I received the most amazing gift of all – Christine gave birth to our wonderful twin daughters. They were healthy and full of life, and I knew at that moment that God still had so many plans for me. My wife and my lovely babies were there for me to take care of, and I had to work doubly hard to provide for our little family.

While I worked, Christine stayed home with the girls. As tax season came around, I found myself working longer hours, seven days a week. It was a stressful time and the lack of sleep began to take a toll on my body over the years. The MS symptoms, although minor, started to become more frequent. I found myself having difficulties walking and my speech started to slur.

No matter how often the symptoms manifested themselves, I always brushed them off as the results of work fatigue and not of MS. Little did I realize that I was still in full denial of my condition. Finally, my wife put her foot down and insisted that I go see a specialist – a line that I have heard so many times in my life. This time, I was going to see not a neurologist, but an internist who specialized in infectious diseases and multiple sclerosis.

The new doctor was very thorough, and I again had to undergo another battery of tests. I was given every blood test known to man and was subjected to another MRI. It did help that he laid out the cards on the table, and for the first time, I confronted this disease – which I had been in denial over for the past 11 years – with unconditional acceptance. He also let me in on a secret that I must have refused to hear in the past – that this disease was going to continue marching on, and if I fail to seek treatment, I could wind up in a wheelchair before I even reach the age of 30.

This “in-your-face” threat kicked me into action. I began treating my MS with medications that I had access to. I started with daily shots of Copaxone, a drug that I was able to self-administer. It was a good thing that needles don’t bother me, as my body today is a veritable pin cushion.

My good doctor also introduced me to the MS Society and the articles they wrote about MS. I developed a new interest in my condition and started reading about it. Some of the literature dealt with Copaxone trials in Israel, where the drug was apparently first tested. In those tests, Copaxone didn’t seem to be causing anyone any harm over the 15 years of experimentation, and I found my condition improving – whether it was from the drug or due to the natural course of the disease, I’ll never know for sure. No one will really know, and that’s the scary thing.

At the time my daughters were in kindergarten, they had a classmate whose father was a chiropractor. His wife and my wife Christine eventually became friends, and she mentioned once that I was always complaining about headaches. The woman replied that she met her husband when she went to see him to fix her headaches, and that was all my wife needed to hear for her to send me off to the next doctor.

Since 1990, I had been abusing Excedrin® as it was my instant solution for the pain in my eye. Each time I felt that stabbing pain drilling into my eyeball, I would reach for the drug and take six to eight tablets daily. Addiction sneaks up on you over the years, one bottle at a time. I knew I had a problem, but it was the only way I knew to get rid of the pain. Anyway, I thought to myself, this stuff was sold over the counter, so how bad could it be?

The chiropractor I saw for my headaches looked into a lot of other factors aside from my biological makeup. He tried to straighten my posture – which at that time was terrible – and said that this would help solve my headaches. This was largely due to my reduced vision which forced me to hunch over a desk while doing paperwork. After giving it a half-hearted effort, I started noticing some improvement.

Apart from looking into the possible causes of my headaches, he also started teaching me about nutrition. In the course of our consultations, I realized how deplorable my diet was. Consequently, he gave me books to read which shook to the core my beliefs about medicine and the medical community. All the while I had been keeping doctors and the drugs they prescribed in the highest regard. Before this time, to me, they were the end-all and be-all of whatever afflictions plagued me, and mankind, in general.

While a lot of the books were partial to non-traditional treatment, they made me, for the first time, take a renewed interest in figuring things out.

It was then 2004 and I was starting to feel great. Aside from taking a multivitamin and one green health drink daily, I was also religiously exercising at the YMCA – every morning at 6 A.M. I rode an exercise bike, which my wife sarcastically called the “Granny bike,” but I didn’t care what she called it, as I was riding it 45 minutes a day and eventually lost 25 pounds. I felt on top of the world and believed in my heart that I was well on my way to leading a normal life, just like all my friends. That spring, I returned to my doctor who enthusiastically reported that my MS symptoms were so much better. The improvement was so marked, he said, that people who didn’t know me won’t even think I ever had MS.

In the course of my reading, I came across articles about how deceiving all pharmaceuticals were and how vile the FDA was. I had my hands on the Physician’s Guide to Prescription Drugs, which stated that the MS drug I was taking was doing me more harm than good. This, coming from a doctor of holistic medicine. That statement scared me silly!

According to these articles, I needed to purge my body of the harmful chemicals introduced by all the drugs I have taken over the years. I also had to get rid of the massive amounts of harmful bacteria and yeast inside my body, which were wreaking havoc on my organs. I had no choice but to change my diet – no red meat, no dairy, and no vinegar – I had to eat just as Jesus did or at least stick as close as possible to a vegan diet.

To cut the long story short, I stopped taking my Copaxone cold turkey but went on with my diet and daily exercise regimen. I felt renewed, refreshed, and rejuvenated. In fact, I felt so happy that I decided to plan the trip of a lifetime with my family. We set our sights on Glacier National Park in Montana and intended to hike at least 5 miles a day on the mountains.

The trip’s highlight was a 2-day stay at the Granite Park Chalet. This rustic hotel was built in the 1930s and can only be accessed via an eight-mile trail along the Continental Divide. It was a fitting cap to our physically challenging adventure, and the views from the chalet could take anyone’s breath away. The silence and solitude at that place washed over my soul like a comforting blanket. For two days, at least, I was able to block off the vagaries of daily life and totally communed with God and nature.

That was in August of 2004, and I never had any inkling that the world was about to come crashing on me in only a few months. In December that same year, I came down with a bacterial infection on my leg. No, it had nothing to do with the MS, but it sent me on a one-year tailspin. The infection was called cellulitis and it was so insidious that I was in and out of the hospital, constantly on intravenous antibiotics for over 3 months. My body was absolutely shot. I felt like I had no immunity to anything.

And that was just the beginning. My walking was also down to less than a mile. I hoped to be able to at least walk around either the big block, the lake, or even the small block around my house – but I couldn’t do any of these without a cane and without stopping to rest every couple steps. What the heck happened to my body? I went from the apex all the way to the abyss in a matter of four months. I was struggling with depression and was constantly feeling sorry for myself. Although I strived to keep at my diet, I was no longer as dedicated to it as before.

Right after this devastating experience, my vision again dealt me another blow. Things were definitely going down hill, my sight clouded over during our walks and I would constantly stumble while walking as well.

To make matters worse, Christine would always pick on my driving and openly express how much she resented my taking the wheel. Only one year after my magnificent Alpine experience, I had to voluntarily give up driving. My decision was prompted by an accident that occurred when I missed a light. At the time, it was tax season yet again, and I was under a great deal of stress. No one was hurt or killed, thank God. But it also meant that my optic neuritis was back – with a vengeance.

It was like treading the waters with the last few ounces of willpower, and I knew I’d be hitting rock bottom soon. I could no longer walk, much less drive a car. I could no longer see clearly while working. Even our marital relationship was bearing the brunt of my condition. Once, Christine expressed how happy she was that I wasn’t driving anymore. As soon as she said this, I felt so enraged. What in heaven’s name could you be happy about? Here I am, I have lost nearly everything, and you are happy? I was so mad at her that I wanted to withdraw completely from life.

My relationships even with friends and other members of my family suffered, and so did my performance at work. The rest of 2005 was a hazy blur – an unpleasant rollercoaster ride that I’d rather forget. Multiple sclerosis is like a thief that sneaks up on you wherever and whenever it wants to, often when you least expect it.

It was gnawing at my being little by little, both physically and emotionally. But a voice inside me nagged that everything happening in my life is a result of a decision I have made at a certain point in time. I realized then that I needed to change, and change now.

The first step to making this change was to get off my pity pad. Feeling sorry for myself only dragged me farther down the pit I was sinking in. I tried my best to turn 180 degrees from where I was at to realize that I still had a stable job, and that there are incredible tools available for the blind that I could use at work. There was also a bus that left one block from my house which could drop me off less than a mile from my office.

I thought about my loving family and my parents who were willing to work with me through my problems. Armed with this new perspective, I came to terms with the fact that my life was actually very good and only I could make it better. I had to bring my mind back to the days where everything was possible and when I could overcome any obstacle.

The second step was to start feeding my mind with positive ideas. I was an avid reader in high school and college, and merely stopped for some reason. I went back to certain classics that I had in my library – books such as Think and Grow Rich, The Magic of Believing, Grow Rich with Peace of Mind, and 70 others. I was on a mission to get my mental game back in check. I also started to read some health books – the MS Diet Book by Swank, and an informational book from the MS Society.

Another milestone in my life was marked February 18, 2006 – it was a day that had been seventeen long years in the making. This was when I resolved never to take anymore Excedrin®, period. Quitting cold turkey was the only way for me to go in the middle of tax season. After two miserable weeks I was finally free from the shackles of this terrible addiction.

For me, this was truly an example of ‘mind over matter,’ and one that I am most proud of. My message to anyone who believes that an over-the-counter drug can’t harm you is: Think again. These things can invade your system little by little and eventually control you. Seek help to move on if you are having problems, and don’t take no for an answer.

By this time, my wife was elated that I was in a better mood, but was keen on pushing me to use some of my knowledge. It was now August of 2006 and I was ready to make the transition from being a passive reader to moving forward by sharing my knowledge with others. For the first time in my life, I was ready to commit to my goals in writing.

There were goals for business, for my family, and for my health. I realized that at age 34, there was a lot more of life for me to live, with or without MS. Once these goals were written and committed, my brain could then figure out how I was going to achieve them. I started to speak in public for my job again, and it felt great. No one could tell that I couldn’t see very well or that I couldn’t drive myself to the meeting. What mattered was they came to see me for the ideas I had in my head.

My work performance improved, and it was rewarding both financially and mentally. In April of 2007, I was able to fulfill one of the most important goals on my list. This was the goal of walking the 1 ½-mile handicap trail at a park near my home, unassisted.

Today, I am able to walk unassisted 2 miles again. I have not regained my eyesight and continue not to drive. I exercise daily, take my MS medicine three time a week, and watch my diet. I have no idea what Multiple Sclerosis has in store for me next, but I now look into the future with unbridled optimism and a knowledge that I will be alright. I take each day for what it is and make the most of it.

Like me, you can make a difference in your own life and in the lives of others. We did not ask to have multiple sclerosis, none of us did, but we can definitely use it to help others in the end.

(C) CG Groth Inc. 2007

Robert Groth, author of “Beat Multiple Sclerosis”, is a collection of inspirational stories of others who have been diagnosed with Multiple Sclerosis. For more information on MS or Robert Groth’s book, Beat Multiple Sclerosis go to www.beatmultiplesclerosis.com

Article Source: EzineArticles.com/?expert=Robert_Groth

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NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.
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