Blogger’s Note: Daily as I take the subway home I see a little boy with brown-rimmed glasses walking with an older woman. He seems tiny for his age, oblivious to the adults around him, much the same as other children. The thing that distinguishes this child from others is the tube that comes out from under his shirt, stretching around his tiny tummy to his back and attached to a quart-sized bag. The bag usually has a bit of greenish brown liquid in it. I don’t know him, and I don’t know his situation but I do know that he is already living life differently than his peers. He lives with an altered body.
He is not alone — this essay by my cousin Janice Klingberg takes us into her world of living with an altered body.
More than 35 years ago, I made an irreversible decision that was to impact my life more than I really knew at the time.
I was diagnosed with ulcerative colitis at the age of 15 but tried to participate in school and other activities as a normal teenager despite the physical discomfort and perpetual worry about accidents. Living through my teens and into my 20s was challenging, but I was relatively good, I thought, at hiding the impact of my illness.
I was grateful that in so many ways my life took an ordinary path—college, teaching career, marriage and children. Despite this, after our younger son was born in 1974 my colitis went wild, in part because of uncertainty about his health. I couldn’t ignore this exacerbation or my new understanding that years more with the chronic condition would make me more vulnerable to malignancies—read that, cancer of the colon. Years earlier, though advised that I might want to consider surgical removal of the colon (total colectomy), I was not emotionally ready to take that major step. By 1975 I was almost relieved when I made the decision to move forward with the surgery and live the rest of my life with an ileostomy—an opening (stoma) on my abdomen through which feces is diverted.
After my recovery and with the loving support of my husband, I was determined to continue living well, but this time without pain or anxiety about toilet facilities. I’ve had to deal with other issues related to my redirected plumbing, but overall, I have been a much healthier person than I ever was before my initial surgery.
I have now lived with an ileostomy longer than I lived without one, and though it’s part of who I am, it does not define me. I have shared my journey with others facing the surgery in the same way people helped me wrap my brain around its long-term impact.
One of those individuals, a young woman my age, helped rid me of fears that I wouldn’t be able wear attractive clothing again and suggested lifestyle changes that would make it easier for me to live with an ileostomy, something that was daunting for a 30-year-old.
Surgery where the body is altered has life-changing potential.
There were unexpected and positive side effects. The entire experience helped to refine my vocational direction– I knew that I wanted to be involved in something that would make life better for others and add meaning to my own life. Stewardship of my God-given skills and talents became even more important to me, so I plunged into the nonprofit communications and fundraising arena. Many dedicated professionals challenged and energized me over the years as we worked together to improve the quality of life for thousands of people.
However imperfectly I contributed to those efforts, I am grateful to have had many opportunities to be part of something bigger than myself; something that brings satisfaction and meaning to my soul.
We live in a world where body image is often skewed and the temptation to define ourselves based on our physical features is strong. As I look back I am grateful to be able to bear witness that life has gone on—indeed, even improved and become more meaningful—after the initial shock of waking up from surgery with my altered body.
- Living with Crohn’s disease: ‘Today I will fight again’ (cnn.com)
- Physically challenged and fashionable (cnn.com)
- Windows (joscelynsjourney.wordpress.com)
- The Politics of Sick
- On What Planet is the Women’s Health?