Diagnosis: Acute Disseminated Encephalomyelitis

Indiana, United States

I am blessed. I have a wonderful, loving family and friends I would not trade for anything. Life was going my way until June 29, 2007.

I had just finished my freshman year at St. Mary’s College at Notre Dame. I was back home for the summer working at the community pool I grew up at. I was the pool co-manager along with being a swim coach and life guard. Although I am three years older than my only sibling, we are very close. Miles and I grew up swimming year-round competitively and we worked at the pool together in the summer. We also spent weekends at my grandparents’ lake home and that summer was no exception.

As the 4th of July approached, I decided to take a long weekend to visit a friend who was taking summer school at the University of Virginia. This would be the first time I would fly by myself. I was excited and looking forward to an enjoyable time. My flights went smoothly and I arrived in Charlottesville, Virginia on schedule in the late afternoon. As the evening progressed I started to feel fatigued. My hands and feet felt numb and my speech slurred. I chalked it up to a long day of travel. I could not get to sleep. At 4:30 am, I called home and in labored speech told my parents about my symptoms and that I was going to the ER at UVA hospital.

Entering the ER, I was favoring one side and they assumed I was having a stroke. They immediately took an MRI and realized that was not the case. There was inflammation in both hemispheres of my brain. Within a few hours, I was nonresponsive.

My parents got the phone call every parent fears. They were scrambling to get my dad on the quickest flight to Charlottesville. My mother joined us the next day after making arrangements for Miles to stay with neighbors.

I came home from RIC in January; nearly seven months after I was stricken. I was in outpatient physical, occupational and speech therapy every weekday for nearly five years.

Now, over nine years later, I am still striving to recover. I can walk with a walker and even upstairs with balance assistance. I can eat and drink regular foods. I go to a wonderful facility, Turnstone, in Fort Wayne for fitness training three days a week. My greatest struggle is speech. It is difficult for me to talk and spelling words is sometimes a challenge. I have recently gotten a tablet sized communication device with a touch screen and I am getting better with my eye-hand coordination using that.

I’ve always worked hard and I am a competitor. I will never give up. This last spring I rode a bike for the first time in nine years. On a tandem bike with my fitness trainer, Emily from Turnstone, we rode 10 miles. I’m not swimming yet, but I love going to the beach. Miles and I are still avid sports fans; even if we are sometimes rooting for different teams. I’ve been able to meet with St. Mary’s and Notre Dame classmates at ND football games. I even got a pre-game tour of the ND locker room. I’ve been a bridesmaid in a high school friend’s wedding.

Although communication is my biggest challenge I still have the gift of my smile to share with everyone I meet. So with the support of my family and my loving friends, I truly have hope:
-to walk independently
-to talk and share my dreams
-to finish school and become a nurse and convey true empathy
-to find the man I want to spend the rest of my life with in marriage
-to attend a Transverse Myelitis camp where everyone has been healed
-to move to a warmer climate

Ashley Harrington