Life is all about choices. Some choices are ours to make and others are made for us...
When I was a child I loved my Barbie doll. She was beautiful with long blonde hair, a perfect body and lovely face. My best friend owned a Ken doll (Barbie’s boyfriend). We would often pretend they got married, had children and lived a Utopian life. Barbie had different outfits for every occasion – from dinner parties and sporting events to exotic vacations and PTA meetings. The toy company must have loved (and profited from) little girls like me who insisted on purchasing each outfit sold separately. Barbie and Ken lived happily ever after in Utopiatown where nothing bad ever happened. I spent hours dreaming of how my life would be like theirs.
As I got older my life seemed to mirror this Utopian lifestyle. I graduated from college with honors, was immediately hired for my dream job in publishing, and fell in love with a man I wanted to spend the rest of my life with. How lucky can you get? But wait! Hold on! What was this? I began experiencing periods of numbness and tingling in my hands and legs, weakness in my entire body and overwhelming fatigue, even after waking from a full night’s sleep. My doctor ordered a spinal tap and CAT Scan to confirm a diagnosis of Multiple Sclerosis. Multiple what? When I heard the diagnosis, I thought I had Muscular Dystrophy, the illness better publicized by Jerry Lewis and his Labor Day Telethons. Once it was explained what I had, I couldn’t believe this could happen to me. The Barbie dream seemed shattered.
Now I was faced with a choice. I could either lose myself in self-pity and spiral downward in a depression, or face this new obstacle with strength and courage. After a few weeks of letting this diagnosis sink in, I chose the latter. The ability to make this choice was made easier because I had two important things in my corner. First, I was blessed with a family who rallied around me with love and support. Second, I was blessed with a boyfriend who loved me dearly. He thought that a life without me was not a life he wanted to live. He told me my MS would be something we’d deal with together, as a team. We were married a year later, and welcomed a beautiful, healthy baby into this world four years after that.
Now let me take a moment to be perfectly honest – I don’t want to sugar coat anything. Living with Multiple Sclerosis is a daily challenge. Living with it is even more of a challenge when you add being a wife and mother to the equation. There are many days when it is burdensome, frustrating and overwhelmingly fatiguing, all while assuming the responsibilities of taking care of others. It takes a lot of inner determination to live up to your dream lifestyle while you are also managing your disease. So when I became pregnant, I knew I’d have to muster up all of my courage to stay as healthy as I could each and every day so I could care for my husband and child. I longed to be a good wife and mother, and also yearned to be a useful and productive member of society. I wondered whether I’d be up for the task.
Before deciding to begin a family, I spent hours at the library researching how pregnancy and childbirth affected someone with MS. I searched for stories about parents with MS, and how parenthood affected their disease. I travelled a few hundred miles to interview a renowned neurologist who specialized in MS and pregnancy, asking questions relating to MS and genetics. I needed to know the likelihood of my child developing MS. I attended MS support groups to meet other twenty-something’s, hoping to meet like-minded peers. Through all of my research I found answers to my questions, and felt assured that having a child would be a blessing and a joy I did not want to live without, despite my MS. Yes, it would put my MS to the test – the stress and fatigue that comes with parenthood could lead to exacerbations. My hormones could be thrown into overdrive during pregnancy and after childbirth. At the time of my research, the statistics of passing MS onto your child were less than 1 percent (this has since changed).
During my nine months of pregnancy I felt wonderful and vibrant. My MS symptoms vanished and I felt terrific. I looked forward to giving birth and eagerly anticipated this new chapter of my life. My son was born two weeks before my due date. I fell in love with my beautiful baby boy.
Many people ask me, particularly those who are newly diagnosed, what it is like to have MS and be a mother, and what pieces of advice could I give to them? This is what I tell them:
• We all have MS differently. My personal experience with pregnancy, childbirth and raising a child will be different from theirs.
• The old saying, “Knowledge is power,” continues to ring true when you begin planning a family while dealing with a chronic illness. I tell them that, ironically, they were diagnosed at a time when you needn’t feel alone or isolated. The Internet has opened up a whole new world of information and support at their fingertips. The newest research has led to choices of different medications that were not available when I was diagnosed. Take advantage of it all – research, read, listen and learn. This will help them in their decision-making process.
• Before I became pregnant, I was walking with a cane and using hand controls to drive. During pregnancy I did not require either of these, plus I enjoyed renewed energy that mirrored my pre-MS self. It was remarkable! After childbirth I had a major flare-up and required Solumedrol. My RRMS quickly responded to the steroids. My circumstances are just that – solely mine. It is imperative they speak to their doctor AND their obstetrician about their own set of MS issues and their concerns.
Yes, life is full of choices. Some are ours to make, and they should be informed ones. Others are made for us – like having a chronic disease – a choice that isn’t ours. The choices I’ve made did not provide me with the “make-pretend” life Barbie and Ken had. But I live in the real world – a world where good and bad things do happen, where we are faced with challenges in our life that we never dreamed we’d have. No one escapes this life without having any challenges. It’s how we face those challenges, and how we make our choices, that give us strength of character, dignity and grace. The choices I made provided me with my own version of Utopia – despite living with MS. My hope is that you, too, will make informed choices about your own life, and I pray they will provide you with happiness and fulfillment to, as Oprah says, live your best life.
Published On: March 07, 2012