As those of you who have read my book SO MUCH MORE THAN MY OSTOMY: LOVING MY PERFECTLY IMPERFECT BODY! know, I have named my stoma (the outward projection of my ileostomy) Lily. Lillian was my mother’s name, and she gave me my first life, and Lily has given me my second, and much healthier, life. Naming our stomas is a wonderful way to love, protect and care for them. By the very nature of a stoma, we must be protective.  Caring for Lily does not take much time, but she will let me know if I have been neglectful, and that is NOT a pretty sight!

I have noticed that when I discuss Lily, I always put my hand on her, as I did while pregnant with my daughters. It is a protective reflex I do not even realize I am doing. But recently, while relating an incident to a friend about Lily, I noticed my hand automatically resting on her. I paused for a moment, and then smiled, because my adjustment to my ileostomy, over 7 years ago, was made so much easier because I embraced the chance at a new life I so desperately wanted and needed.

There are so many with parts that also need protecting, changes in their bodies that they must accept and embrace. Dear ones have many health challenges, ranging from heart issues to malignancies that need to be removed, leaving visual and emotional scars. Some have bladder pain, neck and limbs that are arthritic and cause spasm, the list goes on and on. For some of those dear to me, a responsible diet is important, or diligent treatments, deep and therapeutic massage, targeted exercise, fluid intake can all make the difference between feeling well or not. These are ways of protecting our parts.

My belief is that being educated on that which we need to understand, staying in touch with providers, being proactive are also ways of protecting our parts. What may cause more anxiety and worry, however, is disregarding what our professional medical personnel tell us and reading all that is available online. Much of the extraneous information is just that…need to know basis, and we do not need to know it unless our medical provider tells us we need to know.

As I write this, my mind conjures a memory of my uncle who at 38 years old lost both of his legs due to a disease process that was not understood in 1965. It was the saddest thing that had affected our family, and we all pulled together to make his life better. He spent months at Kessler Institute, and I visited him as often as possible, playing bingo and deciding to become a speech therapist, since my parents thought I was too small to be a physical therapist. When Uncle Jack returned home, his family was faced with so many challenges, and they were heartbreaking to me as a young woman. But I will never forget that his daughters, my cousins, naming his stumps Shapey and Night (that one I am not as certain, but I will never forget Shapey,) and that is how they referred to them. Perhaps the social worker at Kessler made that suggestion to my uncle, since his daughters were so young, and having names ameliorated the fright they must have felt. And it must have helped the family protect his parts.

Regardless of how we do it, finding a way to protect our parts is key to thriving, not just surviving! Please find a way to cope, and if you are interested, read the section on Building a Tool Box in my book. Like any tool, it is all in your hands!

 

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