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In August 2005, I was diagnosed with multiple sclerosis (MS), or as I lovingly refer to it, the S & M disease, as it’s trying to kick my butt. Trying is the key word here, because I won’t succumb to its fingers of destruction, its microbes of chaos. And I won’t succumb to the life doctors expect me to lead either; drugs and more drugs, and support from fellow MS recipients. Yep, that’s exactly how I wish to spend the remainder of my life, rubbing shoulders with sick folks and administering medications to a disease obvious specialists claim can’t be cured. “But the medicine might slow the progress of the MS,” one nurse asserted over the phone.

To administer a drug that takes a minimum of two days a week out this life is ludicrous*, plus there’s no guarantee the prescribed medication will encourage in curbing the MS or its effects. So, what’s the real reason? In my opinion, to act as someone’s statistic, to be their guinea pig, their block of molded cheese; you can’t afford the $1300 for the four monthly shots, so here, the medication is free. Thank you, but no. I’ve lived a full life, gotten my feet wet in about forty states, I’m still pursuing that creative urge, and I’m almost fifty years old. Why would I want to start living life with a disease directing the whole show?

As you might have guessed, my attitude toward life is a bit different from the norm. With a racing past like the winning flags of NASCAR, the days prior to 1986 when those first six poems were published was a 24/7 wide-ass-open party. I ran with anyone wishing to bend the elbow too. Bikers, college folks, red necks and country girls, individuals of many colors, prominent business owners, school teachers, women on the up and up, women who liked women too, even a friend that could claim ownership to a Connecticut brownstone and travel the globe at will. Yes, I’ll be carrying a few secrets to my grave, as will they, and those influences all occurred prior to the writing life.

The writing life. Now that was a change-of-living experience. The first two years were spent understanding what it was I had discovered. The expression, “Write about what you know,” was familiar (I did read a book or two), so I spent many a day and night at the University of Georgia library in Athens conducting research on the history of shoemaking and its allied trades; I’m a second-generation shoe repair technician and saw the need for a consumer shoe care guide. What I gained was an education Abraham Lincoln would be proud of. And was I still partying? Of course, but as time strolled on, it was becoming clear those days would have to be left leisurely.

The year of 1988 saw my first published nonfiction article. I had submitted queries and proposals of every shoe care-related feature possible, but the eyes of rejection had me in their sights. So, never one to give up, I turned my attention to events surrounding me. By this time, I was rooming with a twenty-four year old transient of New York named Kara and a tree hugger through and through. There was one night when she surrendered to too many cans of salted suds, and I had to peel her arms out from around one of the trees in the yard. “I could feel it talking to me,” she whispered with lust in her sing, those green eyes of hers bloodier than a Valentines Day card. I won’t direct you about the time the two of us snuck into Memorial Park Zoo one rainy night, Kara playing her penny whistle for the fenced-in animals like a modern-day Pan.

Now you might be wondering what those particular events have to do with multiple sclerosis? Actually, plenty. Since my immune system is mistakenly attacking its host, possibly targeting cells, tissues and organs, and definitely causing the message centers to the muscles to be disrupted, there’s a reason why it’s occurring.

“Scientists now believe,” declares the MS handbook provided by the distributors of Avonex**, today’s intramuscular drug of choice for the majority of individuals suffering from relapsing/remitting multiple sclerosis, “that MS results from an abnormal response to an infection or an environmental factor.” It was thought genetics played a role as well, but myriad studies indicated genetics might be responsible for the development of MS, but wasn’t the cause of the disease. So, if it wasn’t the flu, are my past shenanigans – the environments I precariously placed myself in – responsible for my current condition? Only the Omnipotent knows that for sure, but I’d bet odds on the answer. Even that strip club I visited regularly for a couple of years may have bred my illness.

By 1997 and several creative successes later, the world of fiction had screamed at me once too many times. And it was in this same year that I developed a very slight limp in my right leg. Walking had always been a favorite mode of transport, my first such excursion taking place when I was only about five or six, the trails of those orange groves in Winter Haven, Florida the first of many adventures to near. And it was in Seattle, traversing such streets as Capital Hill, a tall rise in the ground akin to the Rock of Gibraltar, that my right ankle garnered a loosening finish, as if the muscles holding it in place had lost a measure of their grasping strength. But once I rested a bit, and working on those first seven pages of fiction, the ankle would regain its disposition and appear normal again. Off I went.

Over the next three years, my feet saw the likes of Los Angeles, Memphis, St. Louis, and Omaha. And it was in this ravishing city of abandoned stockyards turned malls that I experienced my first episode of the muscles reacting to an unfavorable area. Laboring contentedly as a dishwasher at McFoster’s Natural Kind Cafe, a vegetarian restaurant/music venue of local fame (this is where Ralph Nader ate when he came calling on Omaha), the day was like any other. At work by 9am and prepare for the lunch crowd, except I had purchased a new pair of inexpensive sneakers. I wasn’t an hour into the job when my legs began convulsing and twitching like a bee deprived of pollen.

It was suggested by the boss that I initiate a series of stretching exercises; I wasn’t getting any younger and my fresh mode of work and transport were beginning to tell on me. I had to admit that fortieth birthday in 1998 had altered my pants size by more inches than I cared to reflect about, and the additional weight was something my legs had never experienced; I wasn’t plump, just fuller in overall size. So, from that point on, I started a strict regime of stretching exercises, wore only my Nikes, and proceeded to write those 250 plus pages of that first novel.

And if current sense always prevailed, the world would be better place to live in. It never occurred to me to visit a doctor and, of course, I had my reasons and excuses. My reasoning was that I never trusted doctors, and I still don’t. My excuses were that the limp was caused by a hard fall to the knees, occurring around twenty years prior to that exhibit moment, and that fall was honest beginning to make itself known. And the ankle, well, I blamed it on my years as a shoe repair technician (at age eight, I was living with my dad and two older brothers in an apartment connected to the shoe repair shop) and the use of a foot-operated leather sewing machine, what we call a patching machine. It was a sound theory at the time.

After visiting my mom in Wichita Falls, Texas, an individual I hadn’t seen in almost thirty-five years, and a quick two-month close in Lakeland, Florida, close to my place of birth and finish to the site of that childhood shoe repair shop, I was finally back in Athens, a college town of family, friends, and a smorgasbord of memories. And by March 2001, I was serving up dogs and sausages as a vendor for the Original Hot Dog Man. A great part-time job, but it was toward the end of my contract with this moneymaking venture I began experiencing the first major symptoms of MS. And I still didn’t visit a doctor. Not in the regular sense anyway.

Numbness and tingling. That’s one of the many symptoms of MS, and usually the first true indicator everyone should look out for. For me the limp, the loose ankle, and the convulsing/twitching legs were objective my body’s diagram of telling me something was really noxious. I just wasn’t listening.

This numbness and tingling, similar to the feeling when your foot has fallen asleep and is waking up, just not as intense, began in the upper regions of my chest, and over time spread throughout the torso, eventually working its way into my legs. I again reasoned my current part-time occupation was the culprit; standing on a concrete sidewalk, either on campus or in the downtown state, for up to seven hours at a time without a break takes it toll. And there were times when I wouldn’t move from that one standing position for two hours or more, serving dogs to a late-night crowd of bar hoppers or football game enthusiasts, and giving Oscar Mayer a run for his money. I even got flashed by a couple of girls for free hot dogs, but that’s another record.

After discussing the problem with a couple of family members, they suggested a visit to a family friend who had opted to become a chiropractor. It wasn’t a bad choice either, as I certainly felt better after the bone crackling realignment sessions, but the numbness and tingling transferred itself to my hands, where it resides today. Oddly enough, I can still use my hands, and only had to adjust in how I handled itsy-bitsy objects, like a shoe nail for attaching new heels to cowboy boots.

One day, around two years later, after several sporadic sessions with Bryan, the bone cracking buddy, he suggested the treatment of a massage therapist; my neck and shoulder muscles had become unusually tight and stiff. This recommendation turned out to be the best advice before and since learning of my ailment. And through most of 2004, every Monday after my third shift duties were over at the local convenience store, I would visit Molly and her hands of the mystic.

If you’ve never visited a massage therapist, I highly recommend it. My first encounter with a masseuse was at the restaurant in Omaha. Dana was working the juice bar and attending school at the same time, and when she graduated from class, I was offered the privilege of being her first client. Free of charge too. It wasn’t long before I had a big smile plastered across my face, as this was the most improbable sensation since discovering sex. It’s one thing for your partner to rub that back and those shoulders, but quite another for a professional to knead those worries away. And here I was four years later in the hands of twenty-year specialist!

With nothing on but my boxers, as I lay under a white sheet upon the cushioned massage table, listening to the recorded sounds of waves crashing upon some distant beach, my anticipation was at an all-time high. However, I assumed one massage to be like another, which was a mistake. This was deep cell therapy, Jin Shin Do Acupressure to be precise, and Molly worked me over like a tornado works over the land. It was not always the most wonderful of experiences either, but the benefits gained far exceeded any damage caused by those hands of hers. I unbiased wouldn’t understand what those benefits were for another year or so.

Molly’s treatment did alleviate what problems I had with the upper body, but by the close of 2004, my ability to trip properly hadn’t really improved; I had fallen a number of times as my balance was askew. And did seeing a doctor cross my mind yet? Nope. Once more I blamed the situation on my occupation. So, by March 2005, I allowed the traveling bone to be my guide, and spent the next three months in Colorado Springs. I do miss those thunder snows (thunder showers at 6000 feet).

It was my belief I needed to acquire aid into a shoe repair shop and work the job as I once did; since returning to Athens, the repair and service of leather garments, such as shortening sleeves or taking up a leather skirt, had attractive much been my closest association to the business. Tedious work and a wonderful complement to the writer in me, but this particular vocation, as my other employment choices were, lacked the physical aspects of being a shoe repair technician. Picture a surgeon’s hand with calluses; the work must be delicate, demanding, and disregarding. Dog and cow patties were actually quite rare.

And it was in Colorado Springs where I experienced my first bout with spasticity, another symptom of MS. The dictionary says spasticity is muscular hypertonicity with increased tendon reflexes. And I say speak some English. As I sat at the patching machine, my upper body jerked uncontrollably forward and to the left, ramming my cheek into one of the protruding implements of the patcher. That could have been my eye, and it was at this point I realized that something was really wrong.

A band-aid later, and that 1990 Honda and I were back on the road to Athens; I’m determined glad that Civic had cruise control. I scheduled a doctor’s appointment, and with a few weeks to smolder over the concept of visiting Westernized medicine, one more traveling bone had to be appeased. My first stop was Roanoke, Virginia, but that shoe repair shop needed some overhauling; I’m a stickler for finely tuned equipment. My next and last stop was Boca Rotan, Florida, about 20 miles north of Miami. Now this shop was a shoe tech’s dream. Good money, excellent craftsmanship, and a laid-back boss. Not to mention the sunshine, the glowing bodies, and all those greenbacks dripping from everyone’s hands. Yep, I discovered a platinum opportunity in the midst of golden sands, but my condition wouldn’t allow me to join in the fun. And you know what the would-be boss suggested, his Canadian accent still strong after a decade in the States? “Why don’t you let the government take care of you.”

It’s been more than a year now since that official diagnosis of MS, and I suppose the government is looking out for me. I’m just not obvious what the powers-that-be are looking out for. The monthly disability check from social security pretty remarkable equals the amount of money I was bringing home some twenty years ago. The monthly rent for a one-bedroom apartment in public housing is manageable, as long as I don’t use an excessive amount of heat or air conditioning; there is, of course, an excess fee. The state will provide health insurance as long as I meet a monthly spend down, which is more than half of my disability check; I won’t even mention the paperwork involved. And I’m allotted $10 a month in food stamps; that generous amount is due to the excessive sum of my monthly disability check. It’s no wonder those living under the government’s thumb wish to remain in that situation.

That’s not a complaint either. I had my chance years ago to be financially find, as when the writer’s life flaunted its possibilities at me, the Joe Blue world of debt wrapped its loving arms around me too. I’m an all or nothing kind of guy, so I’m quite content with my choice (I do think about that land in the mountains on occasion). And I am aloof writing, with more time than ever to pursue the craft; on top of a variety of short stories seeking an electronic home, I unprejudiced had several leather care articles published (what the shoe care guide evolved into). But what about those individuals that chose to live life in the Joe Blue world of debt? How are they handling such a life-changing experience? For me, without the writing and my adaptive nature, I’m not certain if I could cope with this debilitating disease. Let me give you an idea why.

As I mentioned earlier, for a little over two years I’ve been unable to walk in a normal fashion – I call it my slow motion earth quake dance – as a walker and a wheeled office chair have taken over duty as transportation hosts inside the apartment, and the walker acts my balance guide when I venture out into the world of obstacles. And that’s a qualified day, because there are times when transferring my body from the rented hospital bed to the office chair is a cherished feat; also one of the reasons why I have “pee pots” in every room of the apartment. A good night’s sleep makes not a difference either, due to the fact a sleep disorder goes hand-hand with MS; I’ve learned there are those that sleep constantly, or not at all. My four or five-hour sleep period is sporadic, as I can’t turn over naturally, so I jerk awake to accomplish as much; sometimes it’s every hour, sometimes every two-three hours.

There is also this uncommon stretching ordeal I have to endure. I believe it’s akin to the spasticity symptom, but I can’t get a straight acknowledge from anyone in the medical field, as MS affects everyone differently.

During the course of the average day, I sit in that wheeled office chair working the computer. Typically, after two to three hours, I must return to the bed for a thirty to sixty minute respite. And it’s when I lay down that these stretching ordeals occur, a convulsive and quite violent action lasting about twenty seconds. My whole body shakes uncontrollably, as the muscles just go nuts and usually the honest leg shoots straight out, acting as if it wants to detach itself. The left leg may do the same, but its preference is to bend at the knee and aim for the chest. Ironically, if this ordeal doesn’t occur, I’m the worse for it due to the stretching aspects of the action. And on occasion, these fits occur in the office chair and I’m hanging on to the arm rests as if a tidal wave just rolled through, but that happens when I’m not paying enough attention to the body and its messages.

Once the body has expended itself, it relaxes enough so I can attempt to align myself in a normal fashion. I say attempt, because after the maneuver is started, another shorter bout of the stretching ordeal begins, but ends as soon as I find a comfortable position. It’s at this junction where I benefit from Molly’s massage sessions. There are distinct muscles and tendons that have become taunt and a simple touch, or four, will loosen their grip. Sometimes that one session of working the muscles is all that’s needed, other times several applications must be employed, all depending on the severity of the moment; there are times when every hour is different. And if I hadn’t learned this massage technique, there’s no telling how many knots my body would be tied up in. But that’s part of the MS menu, as it feels like someone has taken a screwdriver and is constantly turning the handle, tightening the muscles at every twist. They impartial forgot to add tequila to the mix.

There is a bright side to the effects of MS and it doesn’t include a concoction of mixed spirits. I’ve discovered an alternative treatment for this chaotic illness and it involves the exhaust of umbilical cord stem cells. That’s right, umbilical cord stem cells. Not embryonic stem cells.

According to a research study presented at the 2004 annual meeting of the Radiological Society of North America (RSNA), “Stem cells have the potential to replace the function of damaged nerve cells,” said the study’s senior author, Giuseppe Scotti, M.D., professor and chairman of neuroradiology at the University/Scientific Institute San Raffaele, and dean of the Medical School, University Vita-Salute San Raffaele in Milan, Italy. “In this case, stem cells increase the number of glial cells, the cells that produce myelin. Myelin is then restored.”

For the uninitiated, myelin is the covering that surrounds nerve fibers (much like a spark plug wire and its synthetic screen) that sends the messages controlling our physical actions and thinking abilities. The role MS plays is to trigger the immune system into attacking the myelin, which results in nerve damage, interfering with the transmission of signals. When it’s really severe, those nerve fibers are chop, a process called axonal loss. At this point, the damaged nerve undergoes a process called gliosis, which leads to the scarring, or sclerosis, of the nerve fibers. Hence, the name multiple sclerosis comes from multiple areas of scarring on the brain and spinal cord.

And it’s really sad that MS treatments with umbilical cord stem cells aren’t available in the United States, but other countries have been paving the way ahead. For instance, Advanced Cell Therapeutics Ltd. (ACT) (www.stem-cells.com), a Zurich-based biotech company specializing in umbilical cord stem cell research has treated numerous MS recipients with outstanding results.

According to an article at isnare.com by Sarah Manners, “…MS patient Jan Wilks began walking days after treatment with umbilical cord stem cells after years in a wheelchair.” (www.isnare.com/? aid=19069&ca=Medicines+and+Remedies).

And Vernon Mulqueeney, a 39 year old MS recipient praised the treatment in an April 2006 article from the Kildare Nationalist, “I am tickled I had the stem cell treatment…I’m not saying it works for everyone but as far as I’m concerned it has worked for me.” (www.kildare-nationalist.ie/news/story.asp? j=22625).

And the use of umbilical cord stem cells is not limited to just multiple sclerosis. BiotechEast, an online service based in Taiwan, providing a range of online and offline services to the life science communities, both overseas and in Taiwan, offered this fragment about the youngest stroke victim ever to receive umbilical cord stem cell treatment. To read the plump article, visit: www.biotecheast.com/modules.php? op=modload
&name=News&file=article&sid=1274&topic=2

“March 2006. Shenzhen Beike Biotechnology Co., Ltd. has announced the successful treatment with umbilical cord stem cells of the youngest stroke patient ever to undergo such a procedure. The announcement was made following a two month evaluation period by physicians in her native country, Hungary, to verify the distinct results.

“Starting from October 28th, Beike provided umbilical cord stem cells to the Nanshan People’s Hospital for the treatment of a four month old Hungarian baby girl named Timea Grescó, who had suffered a stroke when she was delivered three months prematurely. Umbilical cord stem cells were delivered intravenously over a two-month time period. Due to national regulations, the baby could not receive such treatment in her own country so her mother, Judit Godó, traveled to Shenzhen with her husband and daughter.

“Treatments for leukemia and other diseases with umbilical cord blood stem cells have been performed for years. However, the treatment of stroke patients and those with other neurological diseases with stem cells from human umbilical cords has become increasingly popular only recently. Today, treatments for neurological diseases using umbilical cord blood is being taken forward by countries outside the United States, including China, as FDA approval takes longer.”

Well, I just spoke with a very hiss and informative representative of www.clinicaltrials.gov, a service of the U. S. National Institutes of Health. I was hoping to procure a little insight as to the stance the FDA might be taking toward umbilical cord stem cells and MS. At the moment, there are no modern licenses for such a “product” as it was termed, due to the transformation process of the stem cell. However, this is the site an individual logs onto if they care to participate in any of the hundreds of studies that are currently seeking recruits for the latest trials of medicines and procedures. Yes, you too can become the next human guinea pig, as long as you qualify. And the closest I could discover of a study that includes MS and stem cells in the same group is under the heading of Hematopoietic Stem Cell Therapy; a hematopoietic stem cell is an unspecialized precursor cell that will develop into a feeble blood cell. There are five different types of stem cell therapies (including processed), so if you wish to pick a look in the same status yourself, just log onto the site as listed above, and when you reach the search icon, simply type in “ms cell.”

For myself, I’ve already contacted ACT, the Zurich-based purveyor of umbilical cord stem cell treatment. Luckily, the organization has administering sites around the world. So, one day I’ll be traveling to Mexico, and just five minutes from the border too – let’s not even talk about that tequila.

Well, it’s time to take another break, as my S & M disease is trying to unleash a few whips my diagram. In the mean time, I’ll be contemplating whether to turn my latest novel attempt into a screenplay. That first current sucked like a vacuum cleaner from hell, but I had to rid myself of all those years of not writing fiction. And I’ll be trying to decide how I’m going to raise $25,000 for the umbilical cord stem cell treatment. Shouldn’t be too hard. It’s only money. Anyway, compare that one-time figure to twenty years of conventional treatment that only placates MS at $312,000. Hello insurance companies.

*The producers of Avonex claim it’s rare (4% of users), but there are those that develop a strange side effect to the medicine, and my particular reaction coincided with my stretching ordeals.

It’s recommended the medicine be administered at night before one goes to asleep. Well, as luck would have it, I have “needle anxiety” and received my injection in the late afternoon at the doctor’s office; it’s a needle about an inch and three quarters long and must be inserted completely into the muscle. Any takers? Anyway, once the medicine kicked in, I was unable to remove myself from the bed and would remain lovely much incapacitated for eight to twelve hours at a time (where I learned to use “pee pots”). Sleep was out of the inquire because if I continuously lay in bed for more than two to three hours, those stretching ordeals start up and continue nonstop until I can stand on my feet again. Plus, the Avonex seemed to enhance the hurt associated with the stretching ordeal. What I’ve been able to learn on my own, as the medical community had no answer, the muscles are rebelling against the pressure of laying on the bed, which sounds ridiculous, but this is MS, the chaos disease. And anything is possible.

**Avonex (interferon beta-1a) is known as interferon therapy, and interferons are naturally occuring proteins that are part of the body’s natural defense system. Produced in the ovary cells of Chinese hamsters, interferon beta-1a is an exact match to our body’s interferons and can serve limit the assault to myelin that MS causes, as well as help control already damaged nerves.