Wednesday, May 27, 2015

World MS Day, 2015

On this day, World MS Day, I'd like to pay tribute to my own personal roll model, my mother.

For over sixty years, Mom lived life as a person who had a disability, with both dignity and grace.

Although it took thirty years to receive a proper diagnosis, she had her first clinically identifying event with MS on Thanksgiving Day, 1953. Mom was just 17, a freshman in college, waking up that morning completely paralyzed on her right side.

I can't begin to imagine her devastation or fear--the uncertainty of what her life held.

I can't imagine my grandfather's heartache, having lost my mother's only sibling to a childhood disease and his young wife to cancer. What a terrifying time it must have been for him as a parent, unable to do a single thing to help his only remaining family member.

 Back then, MS was one of those illnesses shrouded in mystery and our tiny, rural hospital diagnosed Mom with Poliomyelitis and sent her home.

As often occurs with Polio, Mom eventually recovered her mobility and was able to return to her college activities, graduating with her class, despite missing a significant amount of class time.

Throughout her life, the severity of her condition ebbed and flowed. As her mobility began to decline, a string of additional mis-diagnoses were thrown at Mom. She was treated for a seizure disorder by a physician who mistook her clonus tremors as seizures; treated for low blood pressure by a doctor who couldn't find any other cause for the extreme heat prostration she experienced after being in the sun and had her knees operated on by a doctor who swore the foot drop she experienced was a knee joint problem.

In the autumn of 1983,  a new neurologist came to town. A physician who took one look at the puzzle pieces, ran one test and gave us the definitive diagnosis that had eluded my mother nearly 30 years.

Mom never reaped the benefits of the disease modifying drugs many MS patients have access to today, but thankfully, wonderful organizations like the National Multiple Sclerosis Society exist, organizations that are working relentlessly to find a cure for this disease that attacks young people in the prime of their lives. 

Hopefully, one day the mystery will be solved.

A guest at Mom's funeral told me they were sorry she lost her battle with MS. She lived a beautiful life, a happy, content life. For more than sixty years, she lived her life with MS.

She didn't lose the battle, she triumphed, despite her disease and I can't think of anyone who I admire more.