What is a hero?

I have been giving a lot of thought to what makes a hero – a truly extraordinary individual. The newspapers, television and internet are full of stories of heroes – soldiers, police officers and fire officers serving in the line of duty, as well as parents, good Samaritans, teachers – all deserving of the hero label. And then there are the ordinary people who do something amazing in the face of disability or death. They are all heroes – extraordinary in their own way.

Based on the definition of “extraordinary” (“strange” or “special”), transverse myelitis is an extraordinary disease, although hardly heroic. I would argue that “strange” is more applicable to TM than “special”. Strange implies something that is not quite understood in the best of cases and downright negative in other settings. TM, as a disease, certainly is strange but in no way does it qualify as special.

That being said, I would argue that TM patients, extraordinary patients, are special and heroes in their own ways. My daughter has been a TM patient for close to 15 years. She reminds me, every day, what heroic is. There is no denying we have been fortunate in her recovery from her initial diagnosis of TM. She is ambulatory and does not have impaired bowel or bladder functions – truly special in the world of TM recovery. She has, however, suffered with chronic pain for over two years – pain that has upended our lives and caused her suffering on a daily basis. She attends school when she can, is pulling close to straight A’s and maintains a positive (albeit occasionally cranky) attitude. She is extraordinary and a hero in my eyes.

My daughter is not the only heroic member of the pediatric TM community. I have seen it time and time again whether it is a new family whose child has just been diagnosed and is coming to terms with the diagnosis, a child confined to a wheelchair and participating in and loving athletic competitions, child campers and their siblings equally joining in crazy camp activities, a family whose child has NMO bravely facing the future unknowns, or a teenager who is thriving despite the limitations dictated by the disease that has recently damaged their spinal cord.

I could go on – for extraordinary is more ordinary than “special” in the pediatric TM community. Just living on a day-to-day basis for most of these pediatric patients is heroic. Then there are the supportive parents, siblings, grandparents, and medical professionals that deal with TM on a daily basis – people whose hearts have been broken time and again due to a child’s suffering – all are heroes in my book. You may not read about them in newspapers or see them on the web or TV, but they live each day as heroes nonetheless.

~ Linda L