Be There When It Matters Most

Life is full of moments that define us, but I wonder whether those moments define our lives and who we are? For example: If someone wins a million dollars in the lottery, isn’t the winner automatically redefined as a millionaire? Likewise, when someone adopts a child, aren’t they immediately reclassified as a parent? The list goes on. But what happens when someone receives a medical diagnosis? How does this redefine them? As sick? It is a question I think about often and my answer usually changes with the tide.

My mother was diagnosed with Multiple Sclerosis (MS) over 10 years ago, after being misdiagnosed for years. She therefore missed a critical window of time to receive medication that would likely have slowed the progression of the disease.

Fast forward 10 years and countless doctor visits later. Currently my mother manages with pain medication and her iron will. She struggles with her speech, her balance, and has lost most of her strength. As if that weren’t enough, she suffers from crippling migraines. She rarely drives or leaves the house because MS is unpredictable. Perhaps the most heart wrenching of all, she can’t enjoy her grandchildren. She looks on, or listens to stories I tell her about other people caring for my children while I’m at work, because she is unable to do so. I know it breaks her heart – shatters it is more likely. There are moments when I really need a mom, but I can’t and won’t bother my mother because I know how desperately she needs her rest.  Although some days, the cynical part of me wonders, “what is she resting up for?”  My hope is that it’s for a day when a new treatment or medication can restore her to some semblance of the person she used to be.

It’s a tough road for those diagnosed. MS is a chronic, often debilitating disease of the central nervous system and affects everyone differently. There are several stages of MS, and those people suffering with MS may go through one or all of them. Nearly 400,000 people in the United States suffer with this disease that STOPS PEOPLE FROM MOVING. Little by little, it works through the body like a poison, preventing people from their daily activities that once defined them. 

MS is not considered a hereditary disease. However, a number of genetic variations have been shown to increase the risk of developing the disease. The risk of acquiring MS is higher in relatives of a person with the disease than in the general population, especially in the case of siblings, parents, and children. The disease has an overall familial recurrence rate of 20%. It seems to be more common in some ethnic groups than others. Obviously there’s work – and research – to be done.

So here comes the question again. Is the MS diagnosis a new definition for my mother? Has she suddenly morphed from being my mother to just being her diagnosis?  She’s Kathy Bauer, for goodness sake. She’s the woman who slapped the back of my head (oh and the heads of
several of my friends) in church if I dared goof off (seriously, you’d be
amazed at how tough your head can get), the woman who taught me the importance of being myself, how to laugh at myself, how to work hard for what you want. She is the woman who worked six nights a week through my childhood so that she could be a very present mother during the day. MS is not who she was or who she is.

I have been asked over the years how and why I “put myself out there” for all to see. I am sure it would be much easier, much more comfortable for me to keep my personal life to myself, but then that truly would sentence my mother to being a mere number in the 400,000 currently diagnosed. She’s not a number. She’s a wife, a mother and a grandmother. She’s intelligent, funny, stubborn and very sensitive. Her favorite color is yellow and she loves that godforsaken Home Interior garbage (sorry, Mom).  She can remember what I did to make her angry at age 10 and somehow make it relevant today. She’s Kathy. Those are the words that define her, not MS.

Three years ago I became captain of an MS Walk team: TEAM BAUER POWER, to raise awareness, funds and hope, armed with the belief that in the near future, there will be a cure for MS.  I’m helping in the best way I know how – by talking it about, writing about it. I hope you’re listening and reading.

Thank you to The Lowcountry Weekly for their contribution to this cause and for encouraging me to “put myself out there.”