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  • I don't often cross post, but I wanted to share my thoughts on World MS Day without completely reinventing the wheel. This originally appeared on my blog earlier today. It is all mine.

    The other day, I told a friend and my brother that I was taking control of my life. My brother laughed.

    "You are more in control of your life than anyone I know," he said. "MS doesn't control you; you control the MS."

    I laughed, too. Even as I lose control of my body (and sometimes my mind) and spin dizzily into the unknown with spiraling health, I feel like I am taking control of this beast. This life. My life.

    Today is World MS Day, a day and a movement aimed at providing information to the public and raising awareness on how Multiple Sclerosis (MS) affects the lives of more than 2.3 million people around the world. I cannot really speak for 2.3 million, but I can speak for myself and every day is MS day around here.

    MS is one of the most common neurological disorders and causes of disability in young adults, and it is found in every country in the world. More than 2.3 million have been diagnosed with MS worldwide, and it is likely that hundreds of thousands more remain undiagnosed. Even more people are affected indirectly, through caring for someone with MS.

    According to the World MS Day site, "most people with MS are diagnosed between the ages of 25 and 31, with around twice as many women diagnosed than men. It is not yet known what causes the disease, and as yet there is no cure, though there are treatments available that can help some forms of MS and many things you can do to alleviate the symptoms."

    The symptoms, progression, and severity of MS vary widely among individuals but may include blurred vision, weak limbs, tingling sensations, unsteadiness, and fatigue. Some people may feel and seem healthy for many years following diagnosis, while others may be severely debilitated very quickly. For everyone, MS makes life unpredictable.

    As for me, I began showing symptoms when I was 12 (maybe earlier). Apparently, it's not normal to fall head over heels down flights of stairs on a regular basis or to tremble with tremors as a teen, but people just called me a klutz, clumsy, a mess.

    Overwhelming fatigue plagued my days and insomnia my nights. Falling seemed to be par for the course, and the chronic pain of my early 30s was soon followed by dizziness, panic attacks, and briefly severe, inexplicable depression. I started to slur. My vision blurred, and I had trouble focusing. Sometimes, I had trouble recognizing faces of people I knew and loved.

    For a decade and a half, I asked doctors for help with symptoms that only grew worse, and they treated me like a hypochondriac. I hid my symptoms, the severity, the pain. I only went in when things grew so bad that I couldn't take them, and they dismissed me out of hand. I smiled. I pretended that everything was all right. I blamed myself.

    I blamed myself.

    I couldn't walk straight to save my life. I dropped things. I slurred. I looked drunk, even sober, and when I did drink, people lashed out. They aren't very nice to people who can't hold their alcohol, and I couldn't even hold water. Sometimes. I peed my pants. I was a mess.

    Hiking in the Himalayas followed by a particularly stressful weekend with friends led to more falling, blurring to the point that I couldn't read, and finally, two years ago this weekend, my eyes rolled around in my head.

    "What's going on with your eyes?" my brother asked, watching in horror.

    "I don't know," I replied. "I can't stop it."

    After some 25 years of visible symptoms, I saw a GP, a neurologist, an ophthalmologist, and the inside of a magnetic resonance imaging (MRI) machine. Over the months that followed, I saw a lot of MRI machines. I saw a lot of doctors, needles, and X-rays as other things were ruled out (I don't have syphilis!), but as early as the morning of the first scan, I knew. I saw the look on the radiologist's face. I googled the symptoms and discovered that I had 13 of 16 signs of the disorder, and I knew.

    The doctors knew, too. I didn't have just a little nerve damage. Unlike a cousin who spent years awaiting her diagnosis with tiny pinprick lesions, my brain lights up like a Christmas tree and my spinal tap was an ordeal because the nerves in my back are uncoated.

    In MS, the immune system attacks the protective sheath (myelin) that covers the nerves. The damage disrupts the communication between the brain and the rest of the body, and ultimately, the nerves deteriorate, a process that's currently irreversible.

    Two years ago, I learned that had a progressive, irreversible, incurable debilitating disorder.

    It was not a happy day. Week. Month. For a while, I cried. I raged. Then, I moved on with my life because I didn't get the disease two years ago. I got an answer. I got help. I got hope. MS isn't terminal; my life wasn't over.

    Sometimes, I still cry. Tears fill my eyes when I cannot tie my shoes, zip my rain jacket, or open a bag of chips, and it's not about the shoes, rain, or chips. It's about me. I cannot do it. I am frustrated and scared. I am pissed off, and the anger motivates me. I hate the disorder, but this is my life. I will not go to gentle into that good night.

    Living so long without a diagnosis helped me develop a whole crew of coping mechanisms, skills to keep moving and make things work, and fierce determination. I don't try to get out and live life fully despite the exhaustion, nausea, and pain, but because of it. Because of the dizziness. Because of the heavy limbs and even confusion.

    This is my life.

    For years, I lived with exhaustion, pain, and ridiculously poor self-esteem. I felt as if I were going insane. Doctors made me feel that I was crazy, and I was a mess.

    I am done with that. I am an advocate for change – for MS awareness (as well as breast cancer, prison issues, and domestic violence). I raise funds. I raise my voice. I am in control of this life, and I will make something great out of it.

    I am not doing it alone.

    I give thanks to the doctors, nurses, and staff who gave me an answer and continue to give me support, who help me try to understand and control this disorder. The Neurology Center of Washington DC. The Neuroimmunology Clinic at the National Institutes of Health.

    I give thanks to the National MS Society and the National Capital Chapter for their programs, people, and the answers they so eagerly provide. I cannot imagine facing MS alone or without the wealth of information and support the organization provides. I am lucky to live in a place with fantastic resources, medical facilities, and ADA awareness. I am lucky to have the job that I have. The life that I have.

    I give thanks to the nurses downstairs who offered a bed whenever I need a nap.

    I give thanks to the coworkers who understand my need for a crazy early schedule (because I feel better in the mornings), deal with my crankiness, fatigue, nausea, and pain, and overlook my stumbling, slurring, and stuttering as well as ridiculously practical shoes. They remind me to eat, to slow down, and go home.

    Most of all, I give thanks to my family and friends who love me despite all of this, who loved me when I was a mess and show me that they love me every day in a million small ways.

    I am not alone in facing MS. I regret foisting it on anyone else, but I know, on some level, that it's not really my fault. I am not interested in dating because of it. I don't want to bring anyone else into my disorder because I *really* have MS, but my family and friends repeatedly demonstrate that they are here for me. They are here. For me.

    They listen to my (ongoing) complaints. They ask how they can help. They do help. I could (and probably should) write reams on the little things that have made a difference to me, but for now, I give thanks.

    I give thanks.


    #strongerthanMS


    Do not go gentle into that good night
    Dylan Thomas, 1914 - 1953


    Do not go gentle into that good night,
    Old age should burn and rave at close of day;
    Rage, rage against the dying of the light.

    Though wise men at their end know dark is right,
    Because their words had forked no lightning they
    Do not go gentle into that good night.

    Good men, the last wave by, crying how bright
    Their frail deeds might have danced in a green bay,
    Rage, rage against the dying of the light.

    Wild men who caught and sang the sun in flight,
    And learn, too late, they grieved it on its way,
    Do not go gentle into that good night.

    Grave men, near death, who see with blinding sight
    Blind eyes could blaze like meteors and be gay,
    Rage, rage against the dying of the light.

    And you, my father, there on the sad height,
    Curse, bless, me now with your fierce tears, I pray.
    Do not go gentle into that good night.
    Rage, rage against the dying of the light.
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