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A Journey To Greece
This is the story of my own miracle. I set off for Greece to participate in an experimental treatment for Multiple Sclerosis, hoping to find a cure. Impossible, maybe: but what I learned along the way was an even greater gift.
When I found out that I had Multiple Sclerosis in 1985, I began a relentless search for relief from my condition. All of my friends and family were concerned, but no one knew what to do. They seemed to have an endless supply of suggestions and advice, countless articles and books and medical reports. Everyone had a story about someone or something that could cure me. They blamed my condition on bad diet, bad water, environmental hazards or mercury poisoning from the fillings in my teeth.
Ive endured some very difficult and often bizarre flare-ups. There have been times of paralysis, when I couldnt move from the neck down, times of intense pain, numbness, and loss of motor skills when my fingers wouldnt move. I have experienced vision problems, speech problems and even sexual dysfunction. The list seems to be endless. Each time I have a flare-up, I almost always return to normal, although over the years I have become a little worse. Degenerative is the medical term that I have come to reckon with.
I was nineteen years old when the symptoms first started. A small dot appeared in my visual field and became a part of the landscape. Four months later, it disappeared, but not forever. When I was thirty-two it returned like a long lost friend and brought with it a host of other symptoms. I had been working out at this point in my life: running, doing nautilus and lifting weights. One day, as I was running, I lost my balance and landed on my head. When I stood up again, I was wobbly and my speech was slurred. And of course, the old dot had reappeared in my field of vision.
Now that my symptoms were more pervasive than a single bouncing dot, my doctors were certain that I had MS. At the age of thirty-two-- a husband, musician, athlete, and father-- I was diagnosed with a disease to which there was no cure.
I had spent much of my adult life engaged in physical activity. Of all my characteristics, it was my stamina I valued most. Performing in my band, Id prance around the stage like Bruce Springsteen, and be the last to leave the party. In the mornings, I rushed off to my job as a real estate agent.
In my free time, Id take long walks in the mountains of New Hampshire and camp with my family. I loved the outdoors: horseback riding, scuba diving and hiking. MS would one day take these activities and turn them into ancient dreams.
The relationships that I valued most began to change after my diagnosis: My daughter, who was three, wanted to run around the yard with me and ride bikes like we always had. It was hard to explain the fatigue to her or the weakness in my legs. It was easier for her to be angry at me than at this faceless, tireless disease. As for my son: He was born a year after I was diagnosed. Hed never remember the days when I was strong enough to lift him, play ball with him or run.
My marriage was already showing strain in the days before I was diagnosed, and the complications that my health brought to our lives seemed to widen the cracks. I was resentful of my wifes attitude toward my disease, which seemed to fluctuate between defeat and unrestrained acceptance. At one point, she asked her father to build a wheelchair ramp around the house to prepare for, what she thought, was the inevitable outcome of my life. I wasnt quite ready to throw in the towel but she felt she was being sensitive.
MS can bring havoc to ones sexual life and ours was no exception. Sexual dysfunction isnt an easy thing to talk about, and my wife and I seemed to lack the skills to communicate to each other about intimacy.
I also began to sense a division in attitude toward my disease. It seemed some people were sympathetic, while others were resentful. This division is understandable, because sometimes I appear as if there is nothing wrong, and then other times I can barely stand up. No one knew what to expect. Some people thought I was faking it. You certainly look fine, they would say, and shake their heads. Some believed that I had brought it on myself. I mulled over the possibility of karma and past sins.
At some point I decided that I could either do nothing or I could try any one of the countless cures that had come my way. The odds were that either response would yield the same result. I read once that sixty percent of all Multiple Sclerosis patients will experience remission sixty percent of the time, regardless of what treatment they are trying or not trying. This is what I call the divine con. I have learned that I can con myself into feeling better, simply by trying something new, or by not thinking about my disease at all.
Nevertheless, I have left no stone unturned when it comes to treatments and remedies for MS. Ive been given steroids to help deal with the pain and the loss of mobility. Ive experimented with health food diets such as macrobiotics. Ive tried megavitamins, meditation, acupuncture and chiropractors. Ive consulted faith healers, psychics, and medical dowsers, and attended MS support groups. Ive had appointments with neurologists and research specialists. Ive even been to the Ayurvedic clinic to see Deepak Chopra, the spiritual leader and writer. I have found relief from time to time in doing all these things, but I think that most of the benefit came from the efforts I made on my own behalf.
Over the years Ive met many others with varying degrees of affliction. Ive seen how the disease can fluctuate in severity, from person to person and from day to day. In the course of it all I have come to view Multiple Sclerosis as a divine mystery.
In July of 1992 my brother Michael sent me an article from The Washington Post that revealed an amazing new treatment for MS. Miraculous results were reported for some MS patients who were stung by honeybees ten to thirty times every other day. There were claims of phenomenal improvement and even cure. All you had to do was withstand multiple bee stings.
I was told once that a honeybee sting might have the same effect as a steroid injection, a treatment commonly used in MS to abate some of its grueling symptoms. However, the side effects from steroids can be very strong, and there werent any from the bee stings.
A beekeeper named Charles Mraz, along with a young doctor named Brad Weeks, was piloting a media campaign to bring the wonderful news to the world. It was said that the venom from a live honeybee was beneficial for arthritis and more recently, MS. People were telling incredible stories about how much better they had become. I wanted to know more, so I went to Middlebury, Vermont and met with Brad Weeks and 89-year-old beekeeper Charles Mraz. What a delightful and eye-opening experience that was.
Brad Weeks had started a newsletter called "The Apitherapy Society." It shared testimonials from MS patients as well as arthritis sufferers. As a medical doctor, Weeks was careful to organize and distribute the newsletter without actually endorsing the unproven treatment. Cautious of reaction from the medical community, he remained somewhat in the wings, while Charles Mraz did most of the talking to the media.
When I arrived at Mr. Mrazs house that summer, I was hopeful for positive results, and so I dove in headfirst. I started with six stings every other day and gradually built up to ten, and then twenty stings. People who witnessed me getting stung found it hard to believe their eyes; most people could not even watch. Id grab the buzzing bee with a pair of extra long surgical tweezers, set him on my arm, close my eyes, and within seconds Id be stung. It was painful, but yet, I welcomed it: the potential benefits certainly outweighed the three or four seconds of suffering as the bee sank his stinger into my skin.
At first, the results were spectacular: I immediately put down my cane and walked up and down the stairs, to the astonishment of my friends and family.
I too was surprised by these results, but my success didnt last very long. Soon I experienced only fifteen minutes of relief after each sting. But it had been absolutely free, and only the little honeybee paid--with its life.
When a new drug treatment called interferon therapy came out, I stopped the bee stings and learned to use a hypodermic needle. This was the newest treatment for MS, and its release into the MS community was followed by quite a bit of fanfare. So I injected myself every other day with this ten thousand dollar a year drug, sticking with it for at least six months; but in the end the side effects became unbearable.
I decided there had to be something better, but I never dreamed where my search would take me.
When I told everyone I was going to Greece for an experimental MS treatment, everyone warned me not to go. One friend asked, When was the last time you heard of a great doctor from Greece? As for my doctor, he shook his head: You could find yourself there, having complications from the chemotherapy. And then what? What would we do? We couldnt exactly send an ambulance!
I heard all kinds of misgivings about going to Athens for an unfamiliar, low-level chemotherapy treatment administered by an unknown doctor. But I was driven by the need to get well. My instincts told me to go, and so I started planning.
Along with the heated medical warnings from friends and family, I received all of the standard advice for anyone traveling to Greece:
--When you get to Athens, you will understand what they mean when they say everyone in Greece drives with one hand on the wheel and one hand on the horn.
--Beware of Greeks bearing gifts.
--Dont get in a Mercedes cab. They will surely rip you off. They will charge you double. They are all con artists. Dont ever get in a Mercedes cab!
Except for driving to Canada, vacationing in the Virgin Islands, and once walking across the border into Mexico, I had never left the country. I certainly had never entertained the thought of going to another country in search of a miracle cure.
I didnt know much of anything about the Greek culture. I speak a little French, but definitely not Greek, and I was soon to find out what they meant by the old expression It was all Greek to me!
When I left Boston, my younger brother Peter drove me to the airport. I find it difficult sometimes, as the older brother, when I have to ask for help. But Peter always gives it graciously, and this time was no different. Not only was he giving me a ride, but he also gave me a wide assortment of gifts to help me on my journey. There was a miniature compass and thermometer, a compact space blanket, and a book and some snacks from his wife. It was a wonderful sendoff, but odd at the same time.
In Peter's videotape of my departure, I look apprehensively back at him from my wheelchair. Rolling along in the company of the security guards, as if I'm being incarcerated, I wave my last farewell.
Peter was among those who had tried to talk me out of going to Athens for the treatment. He thought that I should see Dr. Hans Kornhubber, a doctor administering the same treatment in Germany. There will be less of a language barrier because everyone speaks English, he said, and the level of efficiency and sanitation is much better in Germany.
Besides, the article from the Orlando Sentinel spoke of both Dr. Kountouris and Dr. Kornhubber. They are both administering the same treatment. I think you will do better in Germany. You will hate Athens. I can guarantee it.
It was too late. From the beginning it seemed I had a calling to go to Greece. Everything had fallen perfectly into place.
My decision seemed to be punctuated by little signs and coincidences. When I had finally found the phone number for the doctor in Athens and called him, the doctor himself answered. It was far easier to reach him than it was my own doctor in the States! I began to wonder if it was some kind of a scam until I remembered that it was I who had called him. There was no way he had been sitting by the phone waiting for the next sucker to call. I thought that would have been too unlikely. No, I felt I had just stumbled onto something incredible.
My mother, who is a travel agent, had booked me into a hotel near the doctors office. I was grateful for that. I hadnt thought through in advance how I would get back and forth to the office. I worried more about how many times I was going to get stuck by a needle. Looking back, there were quite a few things I had left to chance, or in the hands of God.
As the plane made its way to Athens, I thought of my wife and my children. When we said our goodbyes in the morning, I tried to reassure them. Ill be back before you know it, I said, and hopefully Ill be walking like a new man! I told my son Jamie Id yell his name from a mountaintop in Greece, so loud that he could hear me all the way from America. The thought seemed to comfort him.
As soon as I landed, I got into my own collapsible wheelchair and was escorted into . . . none other than a Mercedes cab. That was the way my trip to Athens started, with Costas, my first new friend and Mercedes cab driver.
Costas was an unbelievably energetic and bright face in my dark and unknown future. A ball of energy with a laugh like a roar, he was also a charming con artist. With his jet-black, styled hair and a million-dollar smile, he looked more like a soap opera star than a taxi driver.
At first, when I got in the cab, we both eyeballed each other. It was obvious he didnt speak English very well so I asked him a very simple question: Do you like American music?
His face lit up. Rock and Roll? he asked.
Being a musician, I had brought some musical items with me to help break the ice. I had several CDs with my own songs, some Silvertone harmonicas, my Vagabond travel guitar and various cassette tapes.
Yes! Rock and roll! I replied with fervor. I immediately pulled one of the Silvertone harmonicas out of my pocket and played a few blue riffs for him. His eyes lit up again and I asked him if he liked the blues.
Yes, I like blues, like blues much! he said in his broken English. I handed him my harp and told him to try it.
He was really happy now. He blew on it for a minute and then stopped when he became dizzy, and the car began to swerve on the highway. I laughed and told him that he sounded all right and that I thought he could definitely learn to play the blues. He laughed and blew on the harp some more. I guess he thought I was giving it to him, because he slipped it into his pocket as we were talking.
Our conversation on the ride to the hotel was lively and entertaining, with questions and wild stories being tossed around. Costas told me he was 32 years old and a former paratrooper in the Greek army. I hadnt really thought about the fact that Turkey and Greece are always on the verge of war with each other. He told me stories about parachuting early in the morning over Turkish lines, and of sneaking back to his base after making love to beautiful Turkish girls--killing an enemy or two along the way. I chuckled at the absurdly matter of fact way in which he described the event, as he struggled to find the right words to communicate.
My internal camera jumped to an aerial view and I saw myself for a moment in the back seat of Costas Mercedes taxi, racing down the highway. I felt a rush of emotion as I realized I was actually in Athens, Greece, heading to Dr. Kountouris's office to begin a treatment that might cure my condition.
I didnt see anything likable about Greece as of yet, mostly concrete buildings and clothes stores. I strained to see something remarkable and caught a glimpse of the Parthenon in the distance, but I realized that I was in a rather drab city. I needed a positive sign at that moment and began to feel that Costas was it. He was entertaining me with his wild stories, his positive attitude, and the energy he put into finding the right English words to express himself.
It was easy to forget about my long history of bodily malfunction while I was getting to know my new friend. When I was nineteen years old, I first came down with vision problems that stumped my doctor. He had no idea at the time that I had MS. I was thirty-one when I was officially diagnosed. Over the years I have been confronted with a wide variety of challenging disabilities.
Most of my symptoms are typical of MS: bowel and bladder problems, fatigue, and weakness. Ive had speech problems and Ive sometimes lost the ability to do simple daily functions. Ive had shooting, debilitating pain in my legs and abdomen. There were times when I had pain so intense that I would wake up screaming at night, begging God to spare me.
One time I became paralyzed from the neck down for two months. I was told that I would probably never walk again. Thank God they were wrong about that, but there are still long periods when I need a cane just to make it to my car. Sometimes I am so weak that I cannot make it to the kitchen.
The most profound discovery I made was hearing the sixty-percent rule. What a mystery, that a placebo might be just as effective as actual medicine. It is hard to judge sometimes where the benefit to ones well-being is coming from. Perhaps a spiritual experience can facilitate physical healing. Perhaps our frame of mind is inexplicably connected to our well-being.
I had learned to put great faith in the power of my own belief, an idea I had cultivated by reading spiritual healing books and new age pamphlets. Perhaps, I thought, this is all that medicine is: an elixir whose power to heal is determined by our thoughts about it. I was beginning to think that nothing was impossible, as long as we believed.
When I showed Costas one of my CD's, he marveled at my rock and roll roots and asked me a million questions in his limited English vocabulary. He took me all the way to my hotel and charged me only 3000 drachmas (about $15), exactly double the normal amount. It was my first entertainment expense and it was worth it. He helped me with my luggage, gave me his home phone and cellular number and told me to call if I needed anything at all.
I gave him one of the CDs, which seemed to thrill him, and said goodbye. I never thought I would see him again.
My health was the reason I had come to Athens; but I wasnt ruling out the possibility that hanging out in a bouzouki bar until 4:00 AM was just what the doctor ordered. Later, in just such a setting with Costas and his band of merry pirates, I would find out that he certainly would agree. To keep up with him would challenge the healthiest man alive.
Alone in front of the hotel, my thoughts turned to Dr. Kountouris and the chemotherapy treatment.
The words I believe, I believe were chanting in my head.
My first appointment with Dr. Kountouris was scheduled for the next day. I was planning on taking things very slowly. I even contemplated not taking the treatment at all until I was comfortable and had talked to other patients. I wanted to become familiar with the doctor and his protocol. I didnt think anyone would blame me for turning around and coming home if the treatment appeared to be hazardous to my health.
At the front desk of the Ilisia Hotel I met Peter, the desk clerk. Peter was friendly and spoke English well. He made a lighthearted joke about my being in a wheelchair after he saw me stand up. I explained that I only use the chair when I go to the airport or to the shopping mall and have to walk a long distance.
I told him that I had come to Athens to see a doctor who was offering a new treatment for MS. Peter could not believe I had come to Greece when everyone in Greece was going to America for treatment. I admitted it sounded crazy, but here I was. I explained that I planned to be in Greece for at least two months and then continue the treatment in the States. I wanted to be home for Christmas.
I showed Peter how I walked with my cane. I was a bit wobbly, so he laughed and told me to relax and stick with my wheelchair. I liked Peters sense of humor. Later I would visit him when I wanted to speak English or to listen to one of his jokes.
And so, the night before my first appointment with Dr. Dimitris Kountouris, I found myself settled in a $50-a-night room with a television, refrigerator and two beds. I slept for awhile and awoke in the evening to the sounds of children screaming and parents yelling in the room next door. I hobbled downstairs with my cane to the fast food restaurant two doors away from the hotel. I didnt know quite what I expected, but I was amazed at how similar the teenagers hanging out in the restaurant in Greece were to those in America. I didnt have the feeling that I had left my own country and flown half way around the world.
With all the splendor of ancient Greek architecture, I was surprised at how drab most of the buildings were in downtown Athens. Since 1969, everything had been sacrificed to allow for the massive influx of immigrants. The population had grown from around one million to more than seven million in less than two decades. It was sad to drive around and see only concrete buildings, with the Parthenon looming in the distance. Still, I managed to drift off to sleep that night feeling very much at home in the concrete city.
I awoke with anticipation in the morning. Today I would meet the man who claimed to have the newest, most highly effective treatment for Multiple Sclerosis--a man I knew of only from a small article someone had found in a newspaper.
According to the article, the treatment involved the use of a chemotherapy drug called Mitoxantrone. The drug was given in small dosages along with Immune Globulin, a solution containing human antibodies or proteins. The Immune Globulins are given to reduce the risk or severity of infection while undergoing chemotherapy. I had found, after considerable research, that Mitoxantrone was used to treat prostate cancer and a form of leukemia in the United States, but had never been used to treat MS. No side effects, the article had claimed, because it was given in small dosages.
I asked my own doctor if he had heard of the treatment. He hadnt, and said he had no interest in finding out more about it. If it was something worthy, he felt he would hear about it through the normal channels. The fact that I had discovered it in a newspaper impressed him even less.
My doctor had spent the last four or five years trying to convince me to start Citoxine and Metheltrexate, which are chemotherapy treatments approved for MS. Both were said to have very strong side effects. Citoxine often causes flu-like symptoms, and is associated with hair loss and sometimes bladder cancer when great quantities of the drug are administered over time. Metheltrexate has been linked to liver failure and needs to be closely monitored. I had avoided his advice because I was afraid to consider anything as invasive as traditional chemotherapy treatments. I was more encouraged about Dr. Kountouris's treatment, because he claimed there were no side effects at all when given in low dosages with Immune Globulins.
Finding no help from my doctor, I called the Multiple Sclerosis Society and was told that they, too, were trying to locate Dr. Kountouris. They said they were actively searching the Internet and would know more next week. Their phone, they said, was ringing off the hook with people looking for information.
I decided to call the Reuters News Service in Athens, the source of the newspaper article. The person who answered the phone told me that he was an eyewitness to people being wheeled in to the doctors office, and then actually walking out by the end of an eighteen-month period. I liked the sound of that.
He also claimed that Dr. Kountouris had more than one thousand patients. Then he gave me the phone number for the reporter who actually wrote the article, who in turn gave me the number to the doctors office.
This is how I became the first American pioneer to make contact with Dr. Dimitris Kountouris. Or perhaps, I considered, I was the first fool!
Dr. D himself answered the phone when I first called from the States. He seemed to speak English well enough. He had me fax my history to him and then replied immediately, saying that he thought he could help me, but I would have to come to Athens for the treatment. He explained that I would stay for two months and then continue the treatment at home. The price would be 500,000 drachmas or $2,400 dollars, which seemed reasonable to me.
There is no question that I was feeling hopeful. I needed to find some relief. I desperately wanted to be able to live like a normal man again. This treatment could be the melody that would forever change my life.
I called and spoke to the Reuters reporter again who had written the article about Dr. Kountouris. He told me he was very excited to meet me and thought he could set up some radio and television interviews about my journey to Greece. He even offered to promote my CDs while I was in Athens. I felt like a big celebrity.
Next I called and spoke to the owner of a recording studio in Athens, who also agreed to meet me during my stay. I was getting very excited. I was certain that I would have plenty of music business to distract me. Finally I called the doctors office to confirm my appointment and told them I was on my way.
I would find out later that there would never be any media interviews. But I still think those promises were as much a reason for my physical improvement as the medicine I would take.
Just after noon, I wheeled myself the one block to the doctors office. Anastasia, the office administrator, welcomed me in fluent English. I was happy to find she was expecting me. Beaming with encouragement, she introduced me to Dr. Kountouris as he came through the room. We shook hands. Crazy American, he said with a warm-hearted smile. I think he was amazed that I was there.
The doctor was busy giving orders to the people around him as he glided through the rooms of his clinic. But in just a few seconds he had made me feel welcome and at ease. Immediately we had established a mutual closeness and trust, a meeting of the minds. Without saying very much, we both knew what we wanted and expected.
He asked me to walk without my cane but I could not. He evaluated my situation as I hobbled around the tables and the nurses who were watching with him. Then he said, Okay, sit! and was off to another patient.
I definitely had the feeling that I was in the right place. Amazed at how many MS patients were there, all my fears began to dissipate. I really dropped my guard when I started talking to some English-speaking patients. They explained to me how good they were feeling since starting the treatment.
Next, two nurses took a blood sample, along with my blood pressure. They hooked me up to an intravenous fluid bag. I remember feeling a rush of panic when the first needle plunged into my veins. A clear liquid began dripping down from the bottle above. My mind raced and reeled. It was a terrifying, invasive feeling, and I turned my head so that I couldnt see. I had no idea that I would be getting an IV twice a day until my departure on December 13th, and that my arms would become totally black and blue.
There were fifteen to twenty patients in two rooms receiving IVs. Some were sitting, others were lying down. Doctor Kountouris came over to where I was lying and praised me for being brave enough to come all the way from America for his treatment. Crazy American! he said again with a smile. You will go home a champion!
The doctor was a big man with a wave of black hair sporting a distinctive gray streak in the front. He was fairly young, about 45 years old, and incredibly overworked. He had tremendous pressure on him to give answers and be everywhere at once. People were coming at him from every direction. The phone was constantly ringing. Nurses were being given instructions. Patients were coming and going and men were making deliveries. There was a quite a hustle and bustle in the office. I wasnt saying much, but found comfort in the fact that I had seen thirty or more MS patients come and go since my arrival.
Dr. Kountouris introduced me to Theo, the physical therapist. While the IV continued to drip in my vein, Theo began testing my legs and spent fifty minutes bending and stretching them, trying to determine their strength and the range of flexibility. Next, he hooked me up to an electronic stimulus machine that zapped me with a low voltage charge for an hour. He began by hooking two wires to each leg below the knee, and sending a charge of electricity through them, gradually increasing the voltage to determine my threshold of pain. At first, I was afraid. The language barrier didnt allow me to ask questions and I felt like a specimen in a strange laboratory project. Each time Theo increased the voltage, the muscles in my legs would contract and the skin beneath the wires would receive a jolt of radiating heat. It took ten minutes to get used to the treatment, and indeed, weeks later it became a normal and predictable part of the day.
Theo and Doctor Kountouris were speaking in Greek, which, of course, I could not understand.
You are very easy case for me, said Dr. D as he turned to me. You will be my prize when you go back to America!
Then he gave me a mock peace sign and shouted, Yankee, go home! No more war! Yankee go home! I suppose Dr D. was trying to show me he was from my generation by making a reference to the Vietnam War.
I have always had a hard time trusting doctors unless they are older and wiser than I am. But I had no trouble trusting Dr. D. I only had trouble speaking with him, unless I used the universal language of Rock n Roll. When I asked him if he liked American music, he strummed his air guitar and sang, Give me a ticket for an air-o-plane...
In the company of this likeable doctor, I fantasized what it would be like to ski again and climb mountains, or play ball with my kids. Maybe I would dance with my wife again. I wondered why I trusted this crazy Greek. Only when I thought about my other options did I appreciate once more why I was here.
Before I left Dr. Kountouris's office the first day, I was introduced to Marina Angeli, the psychiatrist, psychotherapist and flower therapist. The doctor yelled to her, as he was walking away, No alternative stuff for him!
I was intrigued and asked her what he meant.
My flower therapy, she explained; it is not for everyone. She promised to explain tomorrow when we had more time.
I wheeled myself back to my hotel that afternoon and left the wheelchair behind the stairwell. I wouldnt need it again until I left Athens, almost six weeks later.
The next day when I went back to the doctors office, I met with Marina Angeli again. She had a very calm and warm-hearted approach and spoke English very well. I found myself taking advantage of her psychotherapy skills and immediately started confiding in her. I think because she spoke such fluent English and because I hadnt had anyone to converse with, all my fears and anxieties came out.
I told her about my father and my feelings of abandonment. I told her about my marital and sexual problems. Everything flowed out of me like a waterfall and I started to cry.
I thought she would solve all of my problems with a wave of her hand. I chuckle now when I remember how she simply acknowledged me and then presented me with a bottle of flower essences.
Here, she said, handing me a little bottle marked Bach Flowers. This is what you need. Try it for two weeks. It should help you adjust to your new environment. It will also help you with your confidence and self esteem.
I marveled at the little bottle. She told me to put four drops on my tongue. It was actually delicious.
It did seem to help me with my self-esteem and confidence, just as she said it would. It wasnt just the bit of brandy mixed into the bottle; there was something else good about it. I liked taking it out of my pocket when I needed to bolster my oomph or build up my pizzazz.
I really cant explain why, but I know I needed Marina Angeli and the magic of her flower therapy to get me through the next eight weeks.
I was feeling very happy that I had made the decision to come to Athens. The large numbers of MS patients at the clinic encouraged me. I liked Dr. Kountouris and his staff. I liked what was in those IV bottles. And whatever Theo and Marina were doing, it was working. I guess you could say I was off to a good start.
After my second treatment that day, I was feeling so good that I asked Theo to let me take him to dinner. The trouble was, Theo wasnt the type who liked to go out to dinner. (Dr. Kountouris called him a Communist. He also called himself a socialist and me an Imperialist). I know Theos type. He doesnt like going out to eat because he hates to spend the money even if it isnt his--and because he can cook so much better himself.
But for some reason Theo accepted my invitation and ordered grilled fish at the restaurant. I was amazed at his delight in eating the whole thing, head and all. He also loved wine and he had no trouble finishing the whole bottle. By the end of the meal he had become quite animated and was making great fun of the American medical world.
He also made great fun of me and the look on my face when they came to put in the IV needle for the first time. I had to laugh, as it wasnt hard to see the humor. He saw me as the scared boy from America. He said he couldnt believe that I had come all the way from America to get treatment from the Communist and the Socialist.
Theo viewed my disease as if it were no big deal. I was simply disabled and nothing more. I only needed to build up my confidence and get rid of my fears and then I could have a productive life. I liked his matter-of-fact thinking. I wanted to believe in this simple approach to healing.
I did not fully realize, that evening, how important Theo would become to me, as there came a day when he may have actually saved my life.
When I experience fatigue, I usually try to do little more than wait for my energy to return. I am never really sure where the energy comes from when it does come back. Sometimes I try to will it back; other times I try to take the right vitamins or exercise in a certain way. I have come up with dozens of methods and I sometimes think that I have found the one that works.
Anybody with MS or chronic fatigue syndrome or a nerve disorder understands that. We question whether it was something we did, or just our positive attitude that got us back on our feet. Undoubtedly I'd be a rich man if I could bottle the attitude thing.
Theo believes it is our attitudes that make the difference. He would always tell me that my mind was strong, but my heart was weak. Hed say, You think you cant walk, but you can. Those words would play over and over in my head.
After an hour of therapy, Theo would come over and take my cane away. Now, walk! he would say. And, not knowing how, I would. I realized that I had to believe it was possible first. But where do you drum up that faith?
Theo and the Mighty Dr. D were somewhat insulting at times. Perhaps it was an effort on their part to snap me out of self-pity. I would hobble over to their office, feeling very tired, and they would say, Tired? Why tired? Why always tired?
Because I am, I would say.
No! Theo would shout. You not tired! You scared!
I had trouble arguing. It felt like tired to me.
I had just gotten back to my hotel room one day when I received a call that my cab driver friend was at the front desk. At first I was bewildered but then, I realized--it must be Costas!
A few minutes later, there he was at my door, my noble con artist. He sat down in my chair and looked at me with eyes close to tears. Then he began singing the lyrics to a very familiar song. It took me a few moments to recognize it, but I realized it was one of mine.
I was dumbfounded until I remembered I had given him my CD when I last saw him. I was totally flattered. Here he was crying because his girl had left him, and he was singing one of my songs. He had even memorized the lyrics.
I asked him for my Silvertone harp back and I made a classic blues sound.
Costas was amazed. He told me it sounded just like his broken heart. How did you do that? he asked.
I showed him again, demonstrating the beginners method of lip placement, and handed him back the harp. He blew on it briefly, and then launched into a verbal assault on Nadia, his girlfriend. She had taken his money and his soul and had retreated back into the heart of Russia. He said he was going to go find her and wanted to know if I would come along. We talked about the situation and then, while he was showing me her picture, he slipped my harp back into his pocket.
I went out to dinner with Costas and a few of his friends that evening. He took me down the back streets of Athens to what he called a steak house. It was actually a seedy back room of what looked like a barbecue grill. The waiter began bringing food to the table as soon as we arrived. It was wonderful and greasy and I had my fill of pork, potatoes, tomatoes, bread and beer.
Several days later Costas showed up at my hotel room again to take me to dinner with his boss and a few other friends. The food was even tastier and much more elegant. We had lamb and pork and several other wonderful dishes, and I ate very well. Costas was really trying to show me a good time.
Afterwards, he took me to a bouzouki bar in an area called Port Piraeus. I sat in a corner and watched one of the strangest scenes I have ever seen in my life. The people dancing on the stage were smashing plates on the floor. More people were getting up on the stage and dancing to the music of the electric bouzouki. I stayed until 4:00 a.m., when I couldnt take it any more. I left Costas at the bar and got a ride back to my hotel. It was the latest night of my stay in Athens, but apparently an early night for the rest of those merry pirates.
The next evening as I was putting on my jacket and getting ready to leave the hotel, Costas appeared. I have to ask you something but I shy, he said.
We sat for awhile while he tried to find the right word in English. He was very visual and seemed to be making a tremendous effort to find the right translation from his native Greek language into English.
Why are you shy, Costas? I finally asked him.
He began to explain that he needed to fly to Russia to box with Nadia. He had to go that weekend. He wanted to borrow some drachmas from me and promised to pay me back when he returned. He was sure he could get some money from Nadia if he went to Russia and tracked her down. She owed him money and an explanation and he was determined to get both.
We went out to dinner again and then drove around Athens. He talked about everything from Athena to Alexander the Great. He asked me again to go to Russia with him, and said that he could get me the necessary legal visa. It sounded wonderful to me, but I had to decline. I didnt want to miss any part of my treatment.
I loaned Costas seventy thousand drachmas and didnt worry about whether he would pay me back or not. Whenever I went out with him he paid for everything. He refused to let me contribute any money.
You my friend, Gary, he would say. When I come to Boston you take care of me like I take care of you.
That seemed fair enough to me.
Another time, Costas came to my hotel to take me to dinner. We were walking into the elevator and suddenly he grabbed my cane. You dont need this! he said. He really believed that I could walk without my cane. You walk!
I was beginning to think there was a conspiracy.
At the doctor's office I was receiving treatment twice a day for an hour and a half. After some noticeable improvement the first week, by the second week I thought I had found a miracle cure. I felt so good afterwards that I would get up and walk with confidence, moving almost like a normal man.
It was hard to say if it was the drugs administered by Dr. D, or the physical therapy, that had the most effect. I gave a lot of credit to the work that Theo did with his electronic stimulus, laser beams, heat lamps and a strange suction device. This wasnt the traditional physical therapy that is used in the States. In any case, I thought, surely I've found the dream team.
After three weeks I was feeling so much stronger, that Dr. Kountouris came up to me and said, By this weekend, you must play soccer!
He knew that I had promised to play soccer with my son when I returned home.
You must be ready! he said. You must be great! Now show me your walk! He demonstrated how he wanted me to walk, with big steps. Migalo vima, Gary, migalo vima!
I liked the sound of the words big step in Greek. First, he said migalo and I would take a step. Then hed say vima and I would take another.
I was feeling good and walking well, and delighted in showing off. I was walking without my cane while Theo and the other patients looked on, shouting, Bravo! Bravo!
I loved the sound of that word, too. Even some of the shopkeepers on Michalakopoulou Street came out of their stores and yelled Bravo! Bravo! when I walked by at a brisk pace with my cane. What would they say now? I could hear the cheers already.
I felt wonderful and went downstairs, after my treatment, to Othellos Restaurant for a salad and steak. But as I got up to leave, I realized that I had lost power.
The walk back to the hotel seemed like a million miles. I was leaning heavily upon my cane. I couldnt believe that I had felt so good one minute, and then the next, needed my cane to walk. I struggled very slowly down the street.
Migalo vima. Migalo vima.
Cars and scooters rushed by.
Migalo Vima. Each step was a struggle.
And then it happened. I fell in the streets of Athens.
The cars screeched to a halt. A man jumped out of his car and came around to where I was lying. I struggled to stand on my own, but decided it felt better to lie back down.
I lay there listening to the hustle and bustle of traffic resume. I felt myself almost drifting off to sleep until two men began lifting me up from each side. Ef harey stow, I blurted out in my best Greek. "Thank you.
Why fall? the man on my right asked.
These stupid shoes, I said, walking away with a wobble.
It became a day-to-day routine. I arrived at 10:00 or 11:00 in the morning and received two or three bottles of IV infusion. Then I would walk across the street to Theos for physical therapy. Then it was back to my hotel for a nap. I would return at 7:00 or 8:00 PM for another IV infusion, and then go back to Theos by 8:00 for another round of physical therapy.
I had some moments of incredible strength and exhilaration during the treatments. Those were the moments that I wanted to share with everyone. I would fax my family and write to my friends. I kept thinking how wonderful it would be to go back home under my own power and not in my wheelchair.
I decided to trade in my wheelchair for a bicycle. What a wonderful thought! It would be a great headline for an MS newsletter: Man Arrives in Greece with Wheelchair and Leaves on Bicycle.
I called my mother on the phone and whispered, Mom, dont tell anyone. Im going to trade in my wheelchair for a bicycle. I wanted her to be the first to know the incredible news before it hit the newspapers.
My mother hung up the phone and immediately called the rest of the family. She told them that I that I was undoubtedly on some kind of mind-altering drug.
At 5:00 AM on December 10th, close to the end of my stay in Athens, I woke up in my hotel room and realized that I was shaking with fever. I tried to move and felt panic surge through my body. I could only move my head and arms. The rest of my body was paralyzed. I couldnt even sit up to pull the covers off my legs.
Dont panic, I told myself.
I couldnt reach the phone; it was two feet too far. I decided to try to go back to sleep, but awoke again an hour later. I still had the shakes and a very high fever. I wanted to cool down the room but I couldnt move. I was terrified.
With a great effort I managed to pull the phone over to me so that I could call Peter at the front desk. I told him to send someone up to open my windows and bring me some bottled water.
I lay there hearing the words of my doctor back home: You could be over there and have complications from the chemo. Then what would we do?
I struggled to keep myself calm. I didnt want my journey to Athens to end on such a bad note. I had arranged for a friend to rescue me if the need arrived, and didnt want to call my friend Dick and ask him to come and rescue me. I was afraid hed have to go home and tell everyone that Id died in Athens.
Finally, two maids came into my room and I asked them to help me sit up. I felt like a beached whale as they grabbed my arms on either side and pulled me up to a sitting position.
Ef harey stow, I said to them.
Kalah, they replied.
Then they opened the windows. The air felt nice and wintry. They gave me some bottled water and scurried out, away from the crazy American.
I sat there for a moment and pondered my ridiculous fate. I wondered what the hell was wrong with me. Nothing like this had happened since 1990 when I ended up in the hospital, paralyzed for more than a month.
With my two legs hanging off to the side, I fell back down on the bed and slept again. Hours later, I woke up and called Dr. Kountouris's office.
Stella, I said, please tell the doctor that Im sick and cant move.
Dr. Kountouris called back an hour later and told me to sit tight, as I had obviously caught an infection. He said he would send someone over with medicine.
The doctors office was only a block away, but still it took Christo, his assistant, four hours to show up with some pills. I could tell by his eyes he felt badly for me.
Christo didnt speak English very well, but he tried to reach out to me in a language I could understand.
Play blues, Gary! he said, and gave me the thumbs up.
I nodded weakly and said, Ef harey stow, Christo.
When he left, I just sat there and cursed Dr. Kountouris and cursed Athens and cursed my doctor back in the States for being right. I realized what Doctor D. had warned me that me my immune system might be suppressed from the treatment. I guess that meant that I could catch anything.
And then Theo walked through the door just like Superman. He picked me up, moved me to the other bed, and hooked me up to two bags of IV antibiotics, hanging them from the closet door.
I asked him what had happened to me.
Dont know, he said.
I told him he had saved my life. He just laughed.
That crazy Communist, I thought. He always seemed to bring me back to life.
Within an hour, I was up and walking around again. I would need my cane for a few days to walk, but amazingly, it didnt take long to recover from the setback.
My last night in Athens. I'm lying on a table in Dr. Kountouris's office getting a final dose of Immunoglobulin.
Dr. D. comes in late with Anastasia to give me his parting instructions and farewells. He tells me that I have received over eight thousand dollars worth of Immunoglobulins, compliments of Dr. Kornhubber in Germany.
He warns me of the importance of keeping up my morale, what he calls my psycho balance."
And he reminds me of the story about the bird.
Once there was a bird that flew to the top of a mountain. He enjoyed his time on top, but he soon wondered what it would be like to fly back down to the world below. He flew effortlessly down the mountain, not realizing what a struggle it would be to fly back up again.
I would need, Dr. D emphasizes, to fly smoothly and evenly from now on, or it will become more difficult to get back to the top each time.
Though I left Athens not needing my cane or my wheelchair, it wasnt a miracle yet. The effects of the treatment would have to last; and I knew now that miracles could take a long time to reveal themselves.
I was not able to continue the treatment when I returned to America. The effects from the Mitoxantrone did not last.
Dr. Kountouris couldnt locate anyone in the medical community who would help. The treatment I had received in Greece was not prescribed for MS in the United States. No one, of course, wanted to break the rules.
This was a tough predicament to be in, and I soon realized I wasnt alone. Scores of people with chronic illnesses have sought out experimental treatments, only to find they havent been approved by the FDA or arent covered by their insurance companies. Sometimes, doctors will bend the rules and prescribe an approved drug for a patient for uses it wasnt intended for. I suppose that in my case, prescribing an unapproved chemotherapy drug for MS was too much of a risk for any doctor to take. Mitoxantrone wouldnt be approved by the FDA for treatment of Multiple Sclerosis until the year of 2000 released under the name of Novantrone.
Dr. D. wrote to me and recommended that I take Metheltrexate as a supplement until I could continue the Mitoxantrone treatment. At the time, however, that was not something I was willing to do. Although Metheltrexate is prescribed in the States for treating MS, I was still afraid of the side effects.
I returned home to find my wife wanted a divorce and so the end of my journey was tempered with disappointment and pain. It seems the problems we had faced before my trip to Greece had magnified in my absence.
I came to realize, though, that the journey itself that had inspired me; memories are powerful antidotes.
I will always remember my taxi ride to the top of Lacavitos, the mountain with the famous Greek Orthodox Church on top. I went there specifically to yell my son Jamies name from the top, having promised I would yell his name so loudly that he could hear me all the way from Greece.
As I made my way to the top of that mountain on a bright, clear day, I was full of hope. Below me, I could see the city of Athens stretching its arms toward the sea. Facing East, I envisioned my son asleep in his bed, maybe dreaming of me. I yelled his name, loudly and boldly, the force of the sound containing my hope. I wanted to walk through the door when I returned home and lift my son into the air. I wanted to dance through the kitchen with my wife, ride through the streets of my hometown, my daughters legs dangling from the handlebars of my bike. And so, when I yelled Jamies name on top of the mountain, I was hoping to awaken the Gods of fate.
My son has grown in the years since I returned. I was never able to play soccer with him, but I found other ways to be his father. I think he knows that the part of me struggling to get well was the part that loved him most.
Ill always remember Theo, and the night we spent jamming in his apartment. He told me an interesting story about his life. When Theo was twenty, he spent ten years wandering around by himself on the islands of Greece. Sometimes he wouldnt see anyone for months at a time. With just a stick, he lived off the fish he caught to eat. He was totally happy. None of the friends that visited him stayed for more than two days, but he didnt mind being alone. I wondered what it would be like to live life so effortlessly.
A few months after leaving Athens, I heard that Theo had suffered a heart attack and was no longer working for Dr. Kountouris. He later moved to northern Greece.
During my visit I was able to set up a recording session at one of the best studios in Athens, where I recorded seven songs with some incredible musicians. That music has stayed with me and carried me through some difficult times. I had been in need of something besides the doctors office, and the musicians I met made me feel at home.
I hope to release those recordings someday. They are a personal best. The positive and perhaps curative power of music is something I have known about for a long time. It is one of the more purely satisfying experiences I had on my journey to Athens.
I returned to Greece a few years after my first visit. This time, it was not to find a cure--at least, not a medical cure. I wanted to laugh with Theo again and look into the far distance for the Parthenon, sitting gracefully beyond the dull concrete homes of the city.
I wanted to yell from the mountain tops, and remember what had made me whole.
Gary Shane Lavenson
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