‘When I reached down to pull up my tights, I realized my arms and hands were paralyzed. Scared, I said, ‘Mom, I can’t move my arms.’: Young woman describes life with a rare autoimmune disorder

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“I’d tried to sit up at least five times. I was an eight-year-old dancer and suddenly I couldn’t sit up.  Only a few hours earlier I’d been fluttering around the dance studio in my recital costume with my friends, leaping and laughing.  And now I couldn’t sit up—or walk or move my arms and hands.  My life had changed so drastically within the blink of an eye.  My life was normal one moment and the next it wasn’t.

Courtesy of Sarah Todd Hammer

I experienced a sudden, excruciating headache in the middle of ballet class, and then when I reached down to pull up my tights I realized my arms and hands were paralyzed. Scared, I told my mom ‘Mom, I can’t move my arms.’ I’d been flown to the ER by helicopter after my mom rushed me to the urgent care center. And from there I lay in a hospital bed for six hours, receiving no treatment, because the doctor didn’t believe there was anything serious going on. I was only eight years old. I was a child. But my determined, stubborn attitude had already shown itself.  I was going to sit up by myself, lift myself up from this unexpected tragedy I was facing.

But I couldn’t. The ER doctor sent me home and told my parents ‘If she’s not significantly better in the morning bring her back. The next morning I woke up hopeful, excited, because I trusted the doctor. I’m going to be fine, I told myself. That’s what the doctor said, so it should be true. But I couldn’t move my legs when I woke up even though I could the night before and my breathing was shallow. I knew the situation was grave but that innocent part of my eight-year-old mind helped me not panic too much. I only really began to panic when EMTs came up to my bedroom and had to carry me on a backboard down the stairs to an ambulance. Only twenty-four hours ago I’d been learning at school like any normal day. How could this have happened?

Upon returning to the hospital that morning, several tests were performed, and I was diagnosed with Transverse Myelitis (TM), an autoimmune condition in which the body attacks the spinal cord. However I’ve since been re-diagnosed with Acute Flaccid Myelitis (AFM), a neuro-immunological disorder caused by a direct viral attack on the spinal cord and a subset of TM. Miraculously after spending fifty days in the hospital (two weeks in the Pediatric Intensive Care Unit and five weeks in inpatient rehabilitation), I was able to walk out of the hospital with minimal assistance. Today, I still have partial paralysis in my shoulders, arms, and right hand, and I’m unable to move my left hand.

Courtesy of Sarah Todd Hammer

Before I got AFM I’d lived eight years of my life perfectly healthy; I didn’t know what it was like to have a disability. But now at age seventeen I’ve lived the majority of my life with a physical disability. It’s odd to think about lifting my arms above my head, or tying my shoes, or holding something in my left hand, because I don’t really remember what doing those things actually feels like. Sometimes I miss doing these things—long to do them, even—but I’ve grown used to living with a disability. I’ve learned AFM is a part of my life now. I always tell others I’m still a normal teenage girl, I still love to dance, read, and write, I just have to do things a little bit differently than most people. And I’ve found I’m okay with that, though it took some time for me to be.

Courtesy of Sarah Todd Hammer

I know what it’s like to experience tragedy.  I know what it’s like to experience pain. But I also know what it’s like to experience hope.

When I was ten years old I returned to school after having a homebound tutor the year after I got sick. I was only in fourth grade but I knew my life was not how it should be. My friends didn’t have a full time aide attached to their hips while attending school. They didn’t have to go to physical therapy. And they didn’t have to lose their independence.  I found myself lost in a bout of depression but I was too young to understand why.

Courtesy of Meg Porter Photography

That harrowing evening in the ER I couldn’t sit up. I couldn’t lift myself up from this unexpected tragedy I was facing. But I later discovered Harry Styles could help lift me. I met him and the rest of One Direction on my Make-A-Wish trip in August 2014. They were all so sweet to me but especially Harry. I gave him my first autobiography I’d published and he was so impressed. After I met him he spotted me in the crowd and waved and he does so at every single concert I attend now. Harry truly just wants everyone to be happy and he actually cares about me! He remembers me and I’m the happiest I could be. Meeting Harry helped me get out of the depression I was in for about two years and I’m so thankful for him because of that. We’ve developed such a special relationship and made incredible memories I’ll cherish forever.

Courtesy of Sarah Todd Hammer

My experience enduring and recovering from depression has taught me it’s possible to find happiness even amidst the darkest of times. Living with a disability has shaped me into who I am today: a three-time published author, dancer, disability activist, and speaker, and I’m so incredibly proud of who I’ve become. My goal is to encourage people with disabilities and let them know life holds so much opportunity for them. If people with disabilities maintain a positive attitude they can go a long way. Staying positive can be difficult, especially when life is so tough, but I’ve learned it’s the key to leading a happier, successful life. It’s possible to push through the hardships living with a disability comes with and do so with a smile.”

Courtesy of Meg Porter Photography

This story was submitted to Love What Matters by Sarah Todd Hammer, Author of 5k, Ballet, and a Spinal Cord InjuryDetermination, and Up and Down. You can follow her journey on Instagram here and on her website hereDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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