My name is Alyssa, I live in Chicago, I am 27 years old, and I was diagnosed with transverse myelitis (TM) in March 2011. On June 27th, I will be participating in the Ironman 70.3 Steelhead in Benton Harbor, Michigan, which will include:
- Swimming 1.2 miles
- Biking 56 miles
- Running 13.1 miles
Why is it important to you?
I have always enjoyed being active — running, biking, golfing, tennis, and yoga. In 2012, I was training for my first registered race; however, it was cut short when I was diagnosed with TM. This diagnosis abruptly put my passion for being active on pause. Instead, I was focused on re-learning how to do simple activities of daily living independently. TM was the toughest physical and mental challenge I have ever encountered. I was fortunate to receive an early diagnosis and be put on the correct treatment plan, and, as a result, I have made a full recovery. Unfortunately, many individuals diagnosed are left with moderate to significant impairments.
What is your goal?
- Raise $5,000 by June 27th, which will go towards building awareness and advancing research for rare neuroimmune disorders, such as TM.
- Show people the importance of being “… less than 1% afraid” and conquering goals you set for yourself – big or small.
- Cross the finish line.
How did you feel when you first heard that you had TM? What thoughts or feelings did you have? Were you scared, lonely, relieved, confused?
Three days into my hospital stay, I looked out my window and watched as a young boy rode his bike alongside his mom. I embarrassingly felt enraged and jealous that the little boy had the capability to ride so freely. It was up until my diagnosis of TM that I too ran, biked, and swam so carefree. I knew there was no “cure” for TM, and I was fearful that I would never be able to do these activities again. My 97-year-old grandfather called that day and told me to, “…be less than 1% afraid.” After hearing those words, I made a promise to myself that I would never take my body and the ability to move carefreely for granted.
How has TM changed you and how your body or your mind works?
I feel fortunate that I received my TM diagnosis extremely early and that I was immediately placed on the correct treatment. Thanks to my doctors, after nine years, I no longer have any remaining physical or mental challenges related to TM. However, this diagnosis has changed my perspective on life for forever. It has made me more present, patient, grateful, and understanding.
What other facts about you (hobbies, favorite things, career, family, etc.) would help people get to know you beyond your TM diagnosis?
My TM diagnosis led me to my career in Occupational Therapy. I have now been working as an OT for two and a half years in an acute care inpatient hospital. My daily mission is to support individuals in their journey to being able to engage in their meaningful occupations, as mine once did for me. I had initially planned to complete this Ironman at my 10-year anniversary of TM. However, over the past year, I worked with many patients who were diagnosed with COVID-19 who unfortunately did not have the ability to see another year. These patients reminded me the importance of making the most of every day.
TM is a rare disorder which means it happens to very few people and chances are, you might be the only one in your community who has had TM. What does that mean to you being the “only one” or having something that many others do not?
Being diagnosed with a rare disorder has given me a whole new level of perspective. I am more grateful for simple things in life. It has also taught me the importance of advocacy, research, and teamwork. As Helen Keller once said, “Alone we can do so little; together we can do so much.”
To help support Alyssa’s Ironman fundraiser for SRNA, please visit her fundraising page here.