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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities



An Uncharted Journey

Issadora [last name withheld]

Issadora first wrote to me when she was eighteen and had just graduated from high school. Three years and more than thirty letters later, my “Issadora file” was bulging with our correspondence. “An Uncharted Journey” is drawn from nearly two years of that correspondence. I extracted and rearranged whole paragraphs and single sentences from Issadora’s letters; Issadora rewrote my extractions and rearranged my arrangements. Back and forth, “An Uncharted Journey” — our “opus,” as we came to call it — traveled the three thousand miles cross-country between us.

I have had some type of illness since birth. I was born one month premature and was jaundiced. I had colds a lot, and at the age of two, I was hospitalized for several weeks because of bronchial asthma. My parents decided that we should leave the cold climate of New Jersey and move to sunny California. I still continued to have problems with asthma, and when I was nine, we went to a specialist in immunology and allergies. He soon discovered that I had many allergies and chronic asthma with acute severe episodes. He also told me that the symptoms I had, such as frequent infections, environmental allergies, and sleep disturbance, fit the criteria of pediatric chronic fatigue syndrome (CFS).

Starting at the age of five, I had pain in my back and legs on a regular basis. At the time, I was so young that I thought it was normal. For many years, doctors diagnosed it as “growing pains” or I was told that it was “all in my head.” When I was around 12, my pain changed from little pain to intolerable pain. I clearly remember the change. It was a damp, rainy night. I awoke feeling rather hot and attempted to get up, but my body would not move without causing excruciating pain. In the next few months, I had an interesting odyssey. My doctor told me she was sure that I had systemic lupus erythematosus (SLE) and referred me to a kidney doctor who also said he suspected that I had SLE. He then sent me to a rheumatologist who told us that I did not have lupus but juvenile rheumatoid arthritis (JRA). A few years later, a new rheumatologist took over the arthritis clinic and diagnosed me with fibromyalgia syndrome (FMS) (non-articular rheumatism).

Around the same time, I ended up in the hospital because I had a tumor that was caused by polycystic ovarian disease. I had surgery due to one of the cysts killing my ovary. Related to this is another endocrine thing I get, but it’s hard to explain.

Of all my illnesses, the FMS is the worst. It causes the poor sleep, the intense pain, the muscle spasms, and the cognitive deficits. I get migraine headaches that last up to three days, and sometimes my stomach gets so irritable that drinking water nauseates me. The muscle spasms, which feel like a huge charley horse that can’t be expelled, keep me awake and make me very tired. The cognitive deficits cause problems with my thinking. Sometimes I can’t remember much or spell correctly, or I can have trouble forming sentences. No one can be prepared for what may happen in this illness. Fibromyalgia is a word that explodes before you and puts you on an uncharted journey. Sometimes it is hard to cope with the unrelenting pain and sleeplessness, and it is easy to become frustrated and depressed. I try not to act as miserable as I feel because there is no benefit in it. I know of some people who committed suicide because of this disorder. This, I must say, is very sad. The pain and other symptoms can really eat at you, and I can imagine wanting to end life. But I could never do it. I always say, “What if there’s a cure tomorrow?”

Over many years, I have tried a few things to attempt to feel better. I have tried chiropractic medicine, TENS (transcutaneous electrical nerve stimulation), physical therapy, medication, counseling, support groups, and pain-control techniques (which help!). I also educate myself about my illnesses and medication, which has given me control and helped me to communicate with my doctors and others willing to accept my knowledge. I feel like I am teaching most of my doctors, who seem to listen to me and take me into personal consideration.

Since I began educating myself about arthritis and fibromyalgia, I have been taking medication to ease the muscle spasms and sleep disturbance. The muscle relaxant stops my muscle spasms somewhat, but it has its unpleasant side effects, such as dry mouth, slurred speech, and lack of full coordination. I also began PT (physical therapy). For two hours every week, I do pool exercises, like range of motion and swimming, and endurance and strengthening exercise. I also do range of motion and strengthening exercises at home.

I learned pain-control techniques from a student of Dr. James Varni, a pediatric psychologist who teaches pain management and counsels children and their families dealing with cancer, chronic pain, arthritis, etc. I learned progressive muscle relaxation and guided imagery. I also learned how to recognize things that make pain worse and how to evaluate my pain on a 0 to 10 scale, with 0 being none and 10 the most. Most of the time, my pain stays at a 6 or above. It rarely goes down. When it does, it is almost strange to me. I keep a diary with my pain scales and record my symptoms, medications, and anything else that may be important. Keeping a pain scale helps me to see what tends to aggravate my condition. This has helped me gain a lot of control over my pain and this control has helped me to cope.

Recently, I learned to mentally accept pain. Ignoring it does not work. When I was a bit younger, I avoided recognizing my pain and used to run away from it, figuratively speaking. Now I just let it sink in and try to take over. But in the end I am the winner. It becomes large, but then I distract myself from it and it becomes small and dull and stays mostly in the background. I have lived with pain so long that it has made its own place in me. It exists just like a heartbeat. Many times it wants my attention and sometimes it gets it, but I have learned to gain some control over it. I believe that the mind is more powerful than the body.

One of the most challenging times is when I have flare-ups. This is when my illness or symptoms become worse. These can come anytime and can range from mild to severe. I think that pain management has helped me to reduce the amount of flare-ups I get. The worst one I had was a very traumatic experience. It began slowly with one small knot in my neck, which gradually changed into a large knot and then multiplied in my neck, my back, my arms, and my calves. I had extremely limited range of motion and a constant, unrelenting headache. My body was HOT; my joints were so warm that when my mom put an analgesic rub on them, it melted. I hurt so bad it is beyond description. If someone touched me, I would scream. It hurt for air to blow on me! It was horrible and took some strong medication to run that away. That flare changed my threshold of pain. I can take a lot more than I used to! My rheumatologist always reminds me that these flares do end and that I can get through them.

If I could just gain some control over my SLEEP! It is difficult to cope with not sleeping. It can bring a lot of anxiety and frustration. In the middle of the night, it is lonely and quiet and feels as if no one is living. The good thing is I get a lot of reading and writing done. I can do homework late and write in my journal or to my friends. It helps to have friends who understand this problem. Once in a while, I get telephone calls at 11:00 P.M. from pen pals who can’t sleep. I always enjoy this because then I don’t feel so lonely.

Many people ask me, “How can you live with chronic pain?” My response is that I just do. When I learned relaxation/guided imagery, I saw how thoughts, stress, etc., can occupy the mind and so was able to concentrate on other things besides the pain. I figure that if you always feel self-pity and depressed, you will find nothing but despair. I think that although I am young to have these problems, they make me stronger. Illness has taught me the basics that other people who have illnesses learn, and I am more patient and caring than the average teen. My age and maturity do not correlate. I find myself not tolerant of people my age, and sometimes I feel I know too much. I can be callous to other “normal” people, because they complain of things that seem so minor. But I try to understand that they are not used to pain and have no idea what I go through.

Despite the many difficulties, I graduated from high school last year, and I am determined to finish college. I hope to get a Ph.D. in health psychology and help other children with chronic illnesses. School is a great thing for me, but it has been an incredible challenge and takes most of my energy. I become very frustrated and I always want to quit. But my stubbornness beats that because I want to control my life and not let this illness take me down.

My greatest accomplishment besides graduating from high school is becoming a musician. I played the cello for six years. I played in district orchestra, the San Diego Youth Symphony, honors ensembles, and I also was section leader and tutor for many years. The practice and schedule was rigorous in some of the groups I performed in, but I am glad that I did it. I eventually lost my seat in district orchestra due to my illnesses. This was extremely painful to me!! I went to a music camp for a week one time. It was not good for my health. I found out the hard way, but it was still fantastic. Sometimes I find it amazing that I played this instrument despite the challenges it brought me. I love classical music, and once I start playing, I forget about my pain until it screams at me. Unfortunately, I don’t have my own instrument, so I have not played since graduation. I miss it.

I love to write to people, and I enjoy reading A LOT. I also enjoy educating others who are interested in the topics I know about. I write poetry and share it with my pen pals, which helps me to cope and let go of my emotions. I am also taking part in a phone-line support group called FM/CFS Teen Voices. I enjoy volunteering for the Arthritis Foundation and best of all, CAMP.

Camp is great. Camp Stepping Stone is a one-week residential summer camp for children 8 to 17 with rheumatic diseases. It is also for young adults, but then you need to be a counselor, which I have been since 1995. But I was first a camper, which was great. I love camp. It has helped define my goals for the future and to know others going through the same types of things I go through. It also helps me appreciate that there are some worse off than me and some better. At camp we can share the most intimate secrets and know everyone will understand. There are no “inside jokes” about our diseases. We share unconditionally and know it will remain a secret. I am different at camp than anywhere. I feel happy, free spirited, and determined. It’s a time where I can find the real me, my natural personality. Outside of camp, I am overwhelmed by the stress that comes from the attitudes of others and day-to-day life. It’s tough being in school where no one has or knows what JRA is. Spending the night at a non-arthritic friend’s house is so stressful because the parents feel sorry for me, and it is difficult for others to understand why at times I can do something and other times I can’t. But at camp none of this matters. Taking medication or not being able to get out of bed in the morning is normal. The embarrassment is not present.

I like all the campers, but one girl that I really like is Jessica. Unfortunately, she passed away last August, but she is unforgettable. She had lupus in a severe form since age five. She really went through a lot, but she looked at everything in a positive manner and never complained. She always lived life to the fullest. I have one distinct memory of something Jessica told me that showed how she looked at life daily. She was on a chemotherapeutic drug called Cytoxan. With this IV drug, they must give you lots of fluids, and she was usually on restricted fluids. She told me, “I always look forward to these days because I can drink all that I want.” She was 13 years old and handled her illness like a pro. I learned a lot from this sweet child. Cynthia, my other friend who I met at camp, is only 16 and has had lupus for almost three years. She receives chemotherapy and has faced many challenges. Her spirit is unbeatable. She keeps on going like the energizer bunny and, like Jessica, is always smiling. Camp is special to them and to myself because it is the only place where people will not stare if we look different. The week flies by but the memories last forever.

My mom’s response to my illnesses varies. She is used to them, but sometimes she is unreasonable about my limits. When I was diagnosed with FMS and did personal research on it, she didn’t want to hear anything about it! Later on, she listened. Now she goes in between these two extremes. She helps me a lot, sometimes too much. When I am in a lot of pain and have stiffness, she helps me through massage, etc. But at the same time she might not help me with certain other things. I cannot walk fast most of the time, and she becomes impatient or embarrassed. One time when I took prednisone, I had major mood swings, which is a side effect. My mom got mad at me for getting so upset even though I couldn’t help it. I’m sure it is hard for her to deal with my illness, but we make it.

My dad is extremely private so I don’t know how he feels. He is a pharmacist, and when I was very young, he did not want me on the medication for my asthma. I have no brothers or sisters. It is sad, but maybe it’s better, I don’t know.

I admit that I can get extremely depressed. I feel very lonely at times, but on the outside I do not act like it. Sometimes it’s frustrating to have these disorders, because it seems like you have to battle everyone. It’s like I have to battle my school, my friends, my parents, my doctors, and every decision I make must be analyzed to see if it fits my health. The only people who understand are those who have or had a major or chronic illness. Because my disabilities are invisible most of the time, it makes life even more difficult. Often people judge me and try to tell me nothing is wrong. If I park in a disabled parking place, people stare at me and make rude remarks. It is hard to deal with people’s attitudes and biases everyday when you hurt and feel awful.

It is important to be in touch with how you truly feel because then you know where you stand. For a long time, I did not understand my illnesses, and so I was not realistic with my goals and could not set my priorities. I now have ideas and goals that I feel can be accomplished, like finishing college and getting involved in helping others. It is important to take things one day at a time because there is too much, and I feel overwhelmed when I think too far ahead. It is hard to be positive, but it’s the only way to make it through each day. I try to stay involved in activities, such as studying, and I’m now co-facilitating a teen group at the Arthritis Foundation. Life is hard, but there is always something to look forward to. As a friend once said, “Keep your face in the sunshine so you cannot see the shadows.”

For more information about the disabilities discussed in this story, please visit the Resource Links page.




spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
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