Disease doesn't define life

Living with a chronic illness is like swimming with your clothes on.

I was diagnosed with type 1 diabetes when I was 14. I was in my first semester living away from home at a private high school when I became sick. I was so tired and thirsty that I was dreaming about water. My younger sister was diagnosed six months earlier, so when my mother came to collect me at school and leaned down to kiss my face, she recognized the sweet smell on my breath.

While recuperating in the hospital, Mom promised that diabetes would not keep me from doing what my friends were doing; she promised that this disease would not define me. I was told I could do anything, and so I did. I spent a semester in Florence, Italy, hiked through the Grand Canyon, rock climbed in Arizona, ran a marathon and jumped out of a plane. I shoved my disease into a closet and pretended it didn't exist.

I didn't let my diabetes out of the closet until I began thinking about getting pregnant. This body that I'd used to propel me from one risk-taking adventure to the next now needed to be treated kindly.

I'd moved to Charleston after graduating from college to be near family and found a wonderful program for diabetics called IDEAL (Intensive Diabetes Education Awareness and Lifestyle) at the Medical University of South Carolina.

I remember walking into the eighth floor of the Rutledge Towers and proudly announcing to my doctor that I wanted to have a baby. Dr. John Colwell smiled and told me to sit down.

He said that I needed to get my blood sugar levels in tight control before I could even think about babies. He explained that the planning stage in a diabetic pregnancy is critical because the baby's organs begin to develop immediately after conception. By the first time I missed my period, my baby's heart would have already been formed. Six weeks after my last period, the time most women discover they are pregnant, my baby would be forming a brain, and by eight weeks, my baby would be completely formed.

I left his office paralyzed with fear. I was not even pregnant yet and there was so much at stake. Scenes from the movie "Steel Magnolias" came rushing back, and I feared becoming a mother would be out of my reach. So I dedicated myself to perfect blood sugar control and was thrilled when I saw the positive lines on my home pregnancy test almost a year later. I made it, I thought, the hard work was over.

But it had only just begun. I was labeled "High Risk," and the threat of birth defects floated just beneath the surface of my pregnancy every time I tested my blood sugar. I was closely monitored, measured, tested, weighed, poked and prodded for nine months by my IDEAL team.

I tested my blood sugar so often that my finger tips were hard and calloused like the bottoms of children's feet at the end of every summer. Every time I got a "bad" reading, I was plagued by guilt and imagined the sugar flowing like poison through my blood into my baby. In the high-risk room of the local hospital, I held my breath every time I had an ultrasound, worrying about what I might see in those blurry images.

I worked hard to exercise, take my vitamins and go to all my doctor appointments. I struggled to think positive thoughts, to visualize a healthy baby, to treat my body less like a machine and more like a mother-to-be.

That was seven years ago, and so much has changed. I am now the mother of two healthy boys who have inspired me to keep the weight of my disease from pulling me underwater.

Becoming a mother has taught me how to take care of myself. Becoming a mother also has inspired me to reach out to other mothers living within the restrictions of a chronic disease.

After almost 24 years of living with this disease, some days still feel like swimming with my clothes on. But I am a strong swimmer. My mother was right: I am not defined by this disease.

Amy S. Mercer is a freelance writer who lives in Charleston with her husband and two sons.

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