Damaged But Not Broken

         When I was a young teen, my mother added a hyperbaric oxygen chamber to her medical clinic, which was located in the lower floor of our house. She was going to offer HBOT to her patients – one hundred percent oxygen breathed under pressure. On the other side of the wall from my bedroom, was a large blue metal chamber that looked a lot like a submarine. It was a last ditch treatment option for patients suffering from incurable conditions – the patients who had already tried everything.

         It was a family business - my mother treated the patients, while my father handled all of the technical equipment - and rather than force me to stay in the private part of the house, my parents allowed me to spend time in the office. After I came home from school, and dumped my book bag onto the floor of my room, I would dash into the office and give a big hug to which ever of my parents’ employees I saw first. One was Sean, the funny and kind man with the shiny, shaved head that he let me rub for good luck; he also taught me how to shuffle cards and play gin rummy. And then there was Alice, the gentle, big-hearted nurse, who often played Frisbee with my brother, my Dad and me, after we wrapped up the workday.

         The patients and their caregivers were also a steady and important part of my life. I was never afraid or made uncomfortable by the illnesses and disabilities that I witnessed. Instead, I formed friendships. Perhaps it was because I was young; what you are exposed to early in life seems normal. There was the kind but tired-eyed mother, who would let me hold her little blind baby who suffered from cerebral palsy. There was the teenage boy, who had been hit by a car while riding his bike and left severely brain-damaged and wheel chair bound. He would give me a big smile every time he saw me, filling my chest with a bittersweet ache. I wished I could hear the words that went along with that smile. I wanted to crawl inside his brain and seam the damage that had been done, so I could break free the boy that was so obviously present, and simply shackled within his own damaged body.

         I would watch them and many others enter the chamber, and put on the clear plastic hoods that delivered the oxygen. It was a complicated, expensive and time-consuming process, but eventually small improvements were evident. The little blind boy reached out and grabbed the string of a balloon, at the celebration of his last treatment. The boy in the wheelchair was able to type a few sentences using a keyboard. They were small improvements, when compared to the grand scale of their disabilities, but they were still meaningful. There was never any guarantee that the treatment would work, or that the improvement would last, but the love the parents had for their children made any benefit worthwhile. Giving up on their children was not and would never be an option.

         They taught me an invaluable lesson, as I was about to be thrown into my own test of endurance - an exercise in never giving up hope. At the end of eighth grade I was struck with a syndrome of bizarre symptoms, including extraordinarily debilitating fatigue, and muscle pain. I was diagnosed with chronic Lyme disease, a bacterial infection transmitted by the bite of a tick. I was treated with oral antibiotics, and they worked at first, but it did not last. By the spring of ninth grade I was ill again. The next few years were marked by a painful cycle – remission than relapse, over and over again. The good time the antibiotics gifted me grew continually shorter.

         When I turned seventeen, I was forced to drop of out of high school completely, and it became clear that another remission was not in my future. My health spiraled downward, landing me in the ER three times that year. My symptoms were so bad that I became housebound; I lost almost all contact with my friends and the outside world. My activities were limited to things that took little to no energy – watching television and movies, reading, sometimes writing on a good day. I took refuge in the written world, reading lots of sci-fi and fantasy, my favorite genres, but also many classic novels. Reading was one of the few activities I could do that would keep my brain active, but it was also a gateway out of my body. I could escape into someone else’s life, at least for a little while.

         Someone who has not experienced a chronic fatiguing illness cannot possibly understand the full extent of its power. Normal tiredness comes and goes, and it allows you to push through its haze and still accomplish something. True fatigue is all encompassing, unrelenting and impossible to defeat. Every cell in my body ached with a lack of energy so profound that just dragging myself to the bathroom to shower, or preparing myself a meal felt akin to running a mile. On top of the fatigue was the pain, an insidious ache that built, until I was curled up in bed in the fetal position, just trying to focus on my next breath, waiting to be released from its hold. Sometimes all I wanted was to go to sleep and never have to wake up again, but then I remembered the patients in my mother’s clinic who taught me that you have to keep fighting no matter what. They reminded me that giving up was not an option.

         Last October, real hope appeared on my horizon, after three years of unrelenting illness. A study was published in Science magazine, reporting an association between a newly discovered human retrovirus called XMRV and chronic fatigue syndrome (CFS). The virus, which has many similarities to the HIV virus, was found in 67% of CFS patients and almost 4% of healthy controls. With the possibility of a new diagnosis, I was suddenly given new hope. It did not matter that the paper referred to CFS and not Lyme, because my strange array of symptoms easily fit the symptoms common to many different fatiguing illnesses, including Lyme, ME, CFS, Fibromyalgia, atypical MS, and Gulf War Syndrome. I had clung to the Lyme diagnosis, because it offered real treatment, where CFS patients were offered none. But after swallowing practically every antibiotic known to man, as well as dumping gallons of them into my veins, it was obvious the treatment had failed. Perhaps XMRV was my answer, my true diagnosis, and the lead to my real cure.

         Right around the time my XMRV test came back positive, a paper was published showing that XMRV was sensitive in vitro to the common antiretroviral AZT. I was suddenly, confronted with a possible solution to my illness. It would be years before clinical trials would be done, but I had already had three years of my life stolen away. I could not wait any longer. So I decided to become the trial. In March, under careful monitoring, I began HARRT therapy – a cocktail of three antiretroviral drugs to prevent resistance, and to hit the virus as hard as possible.

         In the next few months, a slow transformation began to take place within me. I realized that it had been a few weeks since I had been curled up in bed in agonizing pain. I was still fatigued, but it was not unrelenting like before. Over the summer I found myself spending a little time with friends. I went to a concert, and then to a party. I started driving again. It became clear that I was taking slow but steady steps towards health. A few weeks ago, I learned that my immunologic reports are starting to come back normal.

         And for the first time in over three years, I am able to go back to school. I have no way of knowing if the improvement will continue or last. I am a true realist when it comes to my illness, and I will simply revel in each good day I am given, and not expect that another will follow. I have been let down too many times in the past, to expect that a remission will last. The way I see it, the glass is neither half full, nor half empty – it is half a glass of water. But it is half a glass of water that I have not had for three years, and I am ecstatic to finally have a little bit of relief. I am enjoying every moment.

         I am glad those patients taught me the true meaning of resilience, reminding me never to give up on real treatment, in spite of all the odds. I had to wait eight years, but I may have finally found my cure.