The Tinman Syndrome (1) If you are reading this book then the possibility that you , or someone you know has long I have had it. My knowledge of this disease came within the last eight years. I have fibromyalgia. Congratulations!!!! You are in a very special club of chronic pain people. I decided to write this Book dating from my earliest memories of this disease. It was during my childhood that this pain syndrome invaded my belief in Santa Claus, and the Easter Bunny. It was a playmate that I did not want, a playmate that was a bully, and who would beat me up both mentally, and physically. Where was my guardian angel? Diseases are never easy to accept as adults, and especially as children. I have been living with fibromyalgia since I was about 15. I’m now 40, so please feel free to do the math of how I've read nearly every book on the topic. I’m a phone counselor for the national fibromyalgia net - work, and belong to local support groups. Fibromyalgia is still a challenging disease to treat. For a further definition of Fibromyalgia contact The American fibromyalgia association. Chapter one IT IS JUST GROWING PAINS, NOW GET OUT THERE AND PLAY SOME MORE FOOTBALL. Hurting at such a young age is not one of my most pleasant childhood memories. Looking back on those aches and pains I know now I had the “F” word. My body was doing things I had no control over. I was twelve and my muscles were hurting. I just knew I had some unknown incurable disease. I just wanted to make it to the next special moment in my life without dying. I remember lying in bed and making deals with the great creator. One was to allow me to make it to our senior class trip to King’s Island, which is an amusement park in Ohio. Then it would be OK to take me. Well I’m still here twenty-two years later. I told only very few people about how I was feeling and did much editing with the symptoms, Hey, I thought crazy would be my new name. I still remember my mother calling all this “just growing pains”. Well, I must be the oldest kid around, because at forty I still have them. I did not dare let anyone know of my weakness. I had to be strong, just like my athletic brothers. I’m not being judgmental; I love my brothers very much. I grew up in a family of self employed in the craft of siding and roofing. You probably know what is coming up next. Guess who had the job of carrying all those bundles of shingles up the ladder? The other fun job was loading the roofing trucks with all that heavy equipment. Yes my dear brothers it was heavy, and I apologize for the times I dropped those ladders, which scratched the polished paint. I also hated setting up those towering trees of pain, better known as roofing ladders. This was my physical experience as a young man. Now comes the emotional challenges that caused me To bury some challenging emotions, that I’m sure rooted themselves into my muscles. I’m not saying I believe Fibromyalgia starts here, however I do believe we are spiritual beings having a physical experience. CHAPTER 2 PAIN, PAIN, GO AWAY AND DON’T COME BACK ON ANOTHER DAY Lets do a little exercise!!! Imagine your muscles coming tense. It should not be that hard for you! They hurt, now relax them. How do you carry your body during those stressful times? Having chronic pain is enough, now throw stress on top. This becomes the icing on the chronic pain cake condition. I grew up with a very dominanting father. He did the best he could with what he knew, and how to express it. He actually was a funny man, and had a heart deep inside; regretfully to my experience I rarely saw it. He was challenged by alcohol abuse and would become verbally, and physically abusive to others. All of this had a profound impact on my spiritual, physical, and mental self. I know there is much research being done in this area of the emotions in connection to fibromyalgia. I think it is a very gray area, and is only one aspect of any individual’s life. I can not see this as being the sole reason I have this disease, and anyone saying so, well they are far from winning the fibro Frisbee. . So where does this leave a forty year old man who is looking , hoping, and trying to understand what this fibro stuff is all about ? I feel at times like the rusted tin man before his joints got oiled and he could move. Remember his expression as Dorothy and the Scarecrow were oiling his joints? “Oil my elbows, oil my knees, oil my arms” what a wonderful feeling, pain free at last my sentimental friend. Now let’s skip, or walk slowly down the yellow brick road of life in search of some answers, ideas, and yes questions about this fibro thing so that the wonderful Doctor of oz can answer or support us with his “their” knowledge. CHAPTER THREE IF I ONLY HAD A BRAIN During my experience with this fibro thing I have earned several honorary degrees. They are in the areas of medicine, research, and pharmacy. It would be nice to combine these incomes, since teaching art is my true profession. Where does one start with trying to figure it out? It took me about four years until the final diagnosis was stamped on my forehead “Fibromyalgia”. I think it is essential to find any books that are available. I started with reading books by Dr. Mark Pellgrino. The first one was “The Fibromyalgia Survivor”. This is an excellent resource guide. It approaches fibromyalgia from many angles. These approaches range from medical to self help. The medical area has been one of my main interests with trying to understand this disease. I have written to many fibromyalgia newsletters located all throughout the world. I even found a brochure for a fibromyalgia resort in Germany. The couple that owned it called me one day from the day’s inn they were staying at while in the states. They found my name on the fibromyalgia newsletter phone support list out of Arizona.. One can find the closest fibromyalgia newsletter by contacting “The American Fibromyalgia Association” You will find the address in the back of this book. Knowledge is the key to living with this thing. Sometime I can obsess on it too much. Thank god for anti-depressants. A physiologist asked me once to rate my pain by using one of those pain scales showing the body with numbers beneath. I told her it was like your shadow. It is always there with you; however the darkness depends on how much light is hitting you. She told me it was an attitude problem. I said good-bye, and moved on. I have seen the whole spectrum of Doctors. One orthopedic told me I just needed to stretch. I waited for over an hour to get that advice. Two Psychologists, no where there. I had the entire text book tests. I had a complete Psychological evaluation. I must say that was an eye opener. I kept seeing the funniest things in those ink blot cards. I didn’t want the therapist to think I was crazy, especially when I saw the Virgin Mary in a station wagon full of dancing bears. I have been to several therapists for other issues, however the fibromyalgia did find a way to creep in. I have read so many books and articles on the topic, and after awhile I started to think how confusing. One Dr. says this, another. It makes it confusing and frustrating for us, the ones who have the disease. I have an outstanding M.D. He far exceeds any ethical roles as a doctor. He always returns my calls, on the same day. I can tell he cares about his patients by the way he has treated me. I also am blessed by having another outstanding doctor, my chiropractor. He is the genuine definition of “healer”. This gives me strength to call upon my own inner healer, and also the many books that I read, which you will find in the last chapter. Which book do I think is the best, well I have several. “The fibromyalgia survivor” by D.R. Mark Pelligrino I found to be a valuable guide of information that I could use. It was not a book on all these theories by physicians who don’t have fibromyalgia. D.R. Mark does, so it made so much more sense and the tone of honesty is reflected throughout the pages. I find books that incorporate the power of self healing powerfull ,”Physician heals thy self” I also find books of individual encouragement inspiring,. They have kept me moving forward “Physically”. I have discovered that people like us are turning to creative models to help their bodies’ state of pain and confusion. As an artist, one of my ambitions is putting together an art show from people of all walks of life who have fibromyalgia. I want the show to be a reflection of the daily pain we go through. The work can be any medium. The title is going to be “ERASE THE PAIN” for one night only people like ourselves will meet and create out of erasable materials symbols that represent our pain. Then we will erase it. This will demonstrate the power of saying we are not victims but survivors. Anyone interested please contact me at the address in the last chapter. Yes we need to educate ourselves better, especially on how the male gender is affected by this condition. I wrote an article featured in the “ARTHRITIS TODAY MAGAZINE”, This promised a male’s perspective on the subject.. They contacted me later to request if I could send a picture, because they were going to use my story in their soon to be release book on fibromyalgia. Out came the book, nowhere was my picture. The entire book was based on females perspective. Nothing against this however what a non empowering outlook the arthritis foundation took. Do they not know women, men ,children, seniors, and people with disabilities get fibromyalgia. It was a huge disappointment. I felt even more isolated as a man with fibromyalgia, thank you arthritis foundation!!!!! I think this disease has to be approached from both genders and all ages if we are going to make real progress with treatment. I’m glad to see some brochures are using androgenys bodies for trigger point spots. It was a kick below the belt when I was told I had fibromyosisitis”an older word for fibromyalgia”and given a brochure with a womans body on it. One of the first fibromyalgia news letters to take on the male’s perspective was The Fibromyalgia Times, out of Columbus, Ohio. My neck brace went off to Mary Ann, the editor. The news letter even found me a male pen pal. This gave me the hope I needed. I now knew I was not alone. About this time I became a phone support counselor for the fibromyalgia network out of Arizona. This is something I still do, phone support for people newly diagnosed with fibromyalgia . I talked with so many people from all over the country, even from Germany You can call The Fibromyalgia network for a contact sheet. CHAPTERS 4 OIL MY ARMS, OIL MY JOINTS Where is that magical oil can, and those two caring individuals when we need them? I feel support is vital in living with fibromyalgia . I gave the “FIBROMYALGIA SUPPORTER’ to my partner to read. It is written once again by D.R. Mark Pelligrino. Again it is an excellent resource for our spouses, partners, and friends. I have found heat works very well for me. I use those capsicum patches, and cream. I also like P-K-5, a natural topical. You can find it at area drug stores. Here in Chicago at Walgreen’s. I buy the store brand of creams; I found they are just as effective as the more costly ones. However you will have to be the judge of what works best for you These patches and creams have become that magical oil can. When I get a massage that delightful tune from when the Tin man is getting polished comes to my mind all of the time. “RUB RUB HERE, RUB RUB THERE”. That says it all. I have been blessed with finding a chiropractor who does soft tissue work, and muscle manipulation. I don’t know if being a man, and having more muscle mass has anything to do with it, but guys give it a try. My tin hat goes off to my chiro “Derek”. I can’t thank you enough!!!!!. As men living with this disease we are a minority, and this becomes right down frustrating. Just several months ago in a free press newspaper here in Chicago was posted, “wanted fibromyalgia sufferers women age 18 to 45”. What a blow to the equal disease ego. Our medical profession has to stop seeing this has a women disease, bur rather as an individual disease. How many of you are just right down pissed off when a doc tells you that this thing is predominately a womans disease? So how do we men get by day by day living with fibromyalgia/ I hope some of the following creative suggestions help, and please write to me and let me know. My address is in the last chapter. CHAPTER 5 I DARE TO GO WHERE NO MAN HAS GONE BEFORE, “SHARING HIS FEELINGS” I have found keeping a journal so powerful and would like to share with you those words I write when the pain seems to take my sight. GREY FIELD A winded spring field blows eastward. The blue gray is reflected in the cast of the sky, which engulfs my smallness. I stand knowing and accepting this embarrassment The wind becomes slices of painful glass, as reflected memories. I’m, I’m The wind connects me to my earth Scenes of my path blowing in all directions. The dirt pebbles my face with abrasions of past dirty layers of lies. My body is soft sand stone. I raise my arms in an arch from earth. Resurrecting from the chains of pain. I claim Keeping me so rooted in this field of life. A scarecrow. I’m breathless. Lost in the field. The sun will turn to moon Forever in motion. Sainthood erects’ s a monument in this casted gray field. Hope is to see my faith. At first I thought what is a journal going to do for me? Oh I have read so many books on the power of writing, expressing it all through words. It is funny. After all ,I’m an art therapist and know the power of the creative process. I myself use the image of the tree in many of my paintings. The following is from one of my statements about one of my tree paintings that I had shown in “ART IN ACESS”, an art exhibition for artists challenged by disabilities, which was held in Chicago during the week of “THE AMERICAN WITH DISABILITY ACT” celebration. “Living with Fibromyalgia has brought me to an awareness of symbolism seen in nature. This tower upwards keeps growing, bending, in all directions as if it was affirming the strength of the inner self. The roots that keep us all grounded to our human spirit” I’m in the process of working on an entire body of work reflecting this idea, that the yogis of nature show us each day, the natural poses of yoga. CASTLES IN THE SKY I know the concrete bricks of letters They form all ideas. Each brick is a mason’s symbol of language. Each symbol of language builds a wall A wall can be a force of support, or a fortress to the withering shadows. You see the bricks to build your faith. Oh so concrete. You look upward to see it. This enables you to see all ways of looking at truth. And on the clouds where they stand, you see a gentle whisper move them along Sometimes you don’t have enough time to see each castle. Not to worry all truths repeat themselves. ROOTS Rooted in deep saturated soil of emotions. Sun reflects on each individual soul. All canopies embrace the unique branches of lifes path. Each soul falls back to earth. Only to express self through colors of allness. I hope by now you have a better understanding of who I’am and who you are? “MEN LIVING WITH FIBROMYALGIA” we have jobs, car payments, and house payments, student loans to pay off, and often in society eyes the figure head of the family. I hope that idea comes to a closure soon. I think talking with children is a great way of learning more about who we really are. They still have the gift of imagination, which believe me does wonders. The sad thing is,children also get fibromyalgia. So if you think being a man with fibromyalgia throws you into a minority club. Think of being a child with it, I was. So to children everywhere who have been given this condition at such an early age, the following story is dedicated to you. Dads, read it to your children, and have them read it to you if you have fibromyalgia. I have been honored with having the following short story published in several fibromyalgia health journals. THE LITTLE TREE In a forest of magic and wisdom and of rainbows and fairies, lived a little tree who was smaller, by far than any other. H e knew that his branches were supposed to be strong and always reaching upwards because his mother and father would tell him so. “Little tree,” they would say, “stretch your branches up to the sun so the birds may come and played music on your limbs.” With all his might, he would try to reach for the sky but he could not hold his branches so high for very long. Little tree would lean sadly against his mother while he watched all the branches of all other trees in which birds of all colors and sizes were nesting and singing praises to the magic of the forest. His own little branches could barely hold his leaves, and they ached with pain. Across the valley of blue and sunlit flowers lived an old wise forest elf. Little tree’s mother called upon him to see why her son was having a hard time with childhood roots. It was a cloudy day in the forest when he came to see little tree and the silver reflection on leaves from the recent rain mirrored his image and his magical bag of potions. The elf was the wisest soul in the forest; surely he could heal little tree. Wise old elf embraced little tree. “Ouch”, cried little tree. Father tree started to scold his son “quit being such a little sapling. Let the old one touch you, he will heal you.” Little tree started to cry. Wise old elf said,”why do you start a rainstorm on me, little tree?” Little tree turned his leaves so he could better see the magic one. “I hurt from my roots to the tip of my crown, “he said. “My branches feel all twisted and knotted. My trunk feels as if a thousand wood-peckers were doing their noise making dance on me”. As his tears continued to fall, he said, “I feel more like a weeping willow than a royal oak. My branches cannot hold the beautiful song makers of the valley or the colorful rainbow of butterflies that take flight.” With this, little tree dropped his branches to where they took the shape of heavy, wet rope. Wise old elf stepped back from under little tree. He stood there with all his magical devices, rubbing his fingers through his snowy, white beard. The clouds were parting and sunlight started to dance down from the sky, warming the valley. The blessings of the wood fairies could be heard as they gathered on the shoulder of the wise old elf. One magically whispered in wise old elf’s ear. “What is wrong with little tree? Hurry and fix him so we may color his leaves with earth tones for the coming fall.” Wise old elf held his powerful arms up to heaven and asked the great creator of the forest for guidance. You see, wise old elf could do many things of wonder, but he could not heal little tree. To him this tree looked just like any other small tree in the forest. He came from strong roots, and from a family of shading grace. Wise old elf had seen the entire forest grow from the beginnings of time. He remembered the first rain onto this once barren field which was now linked together by intertwining branches of love. Little tree leaned his heavy, burdened branches around his mother’s. “I’m so scared because of how I feel. It hurts mommy, and no birds will sing their songs in my branches because I cannot hold my arms to the sky. Why do I have this pain and hurt? It is not fair that no other tree my age feels this way. All I hear is the echo of tree teasing from the others. Sometimes I wish a lumberjack would come along and….” Just then a radiant light danced down from a mighty golden spiral in the sky, lighting up the face of wise old elf. A low humming noise was whistling through the valley until it came upon the ear of the old elf. “Little tree,” spoke wise old elf. Little tree turned his leaves once again so he could see the old elf. All was silent in the valley. Even the wind had become voiceless. The birds of the forest bowed their heads in silence. The animals crept up to little tree, filled with love for their brave, little branched friend. The fairies surrounded little tree, holding circles of light that were reflections of the sun’s warmth. Wise old elf walked under little tree and raised his head, looking upward into his branches. He lifted his hand to touch one of the small, drooping branches. “Do you know why you feel pain in all your branches?” “No, whispered little tree, as his leaves were gently stroked by his mother’s branches. The wise elf summoned for all the forest to listen by singing an ancient forest song. Golden light in the air I breathe touching all my branches from you to me. We all are branches of the one loving tree. Bless the forest with understanding the pain of our little tree. “Little tree,” spoke wise old elf, “the name of your pain is fibromyalgia.” The word was winded throughout the entire forest. Fibromyalgia is a painful bark condition. It can make your roots so painful that you will want to cry, and it is ok to cry. You must understand that maybe your branches can not hold the birds to make their music, but they can hold caterpillars until they are born into butterflies. Maybe you will not be able to reach all your branches to the sky to touch the sun, but earth needs shade at times and lower branches like yours are perfect ones. Yes you will feel pain for no forest is perfect. However you must remember you are a royal oak and you will always be a tree of strength and truth.” With this, the entire forest of trees interlocked branches to form one. The old elf lowered his head, turned and walked towards the hills of home. A swarm of lighted fairies lit his path as the sun was lowering its face into the sky. Fall came to the forest and then did winter. Months passed while wise old elf spent his days doing deeds of good throughout the forest. It was on the first day of May when a purple passion flower fairy landed on the old elf’s shoulder. “Ah,” said wise old elf, “you bring me news of my friend little tree.” The old elf snuggled the fairy in his vest pocket and spoke that he must journey to see for himself. The fields were of mustard yellow and the scent of dandelion blanketed the spring-top crescents. The winding road seemed steep for our elderly friend. As he came through the clearing, clouds of rolling white peaks cast shadows to the earth below. At the top of the hill stood little tree, who was not as little as before. The old wood elf stepped up the hill to the trunk of his little friend. What he saw was not the same as nearly a year ago. Little tree turned his leaves so he could greet
Go to part: 1 2
Copyright © 2003 Kurt Fondriest |