As a child, I frequently looked for a place to hide when meeting new people. My insecurities overtook me, and I wanted more than anything to become invisible. As I matured, like so many of us, I grew more able to rise above my fears and engage, which brought with it a feeling of involvement and success. The cycle, which had been a vicious one of hiding, feeling badly about hiding, and then wanting to hide even more, was replaced with one that brought happiness. The more I engaged, the more I wanted to continue to do so, to get to know people and to want to spend more time with them. The more I put myself “out there,” the more I felt comfortable out there.

For the over two decades that I struggled with my bowel issues, however, I felt I was hiding a secret, and it was a very debilitating one at that. I worried constantly about needing to be rushed to the Emergency Room or the Operating Room. My life felt out of control, making any plans felt quite impossible. Being with people, being friendly and involved had to take a backseat to my medical issue.

And then I had my ileostomy 7 years ago, and my life changed radically, and certainly, for the better. I loved to share with others the better life I now had. I decided to write a book about my experiences, and that of others, as well as coping skills and tools for anyone facing life’s trials.

Writing my book, SO MUCH MORE THAN MY OSTOMY: LOVING MY PERFECTLY IMPERFECT BODY! has brought me so much joy. Yes, there is pride in the accomplishment, but more than that, there is the knowledge that I am reaching so many who are struggling, as I had. The book is meant to say, “you can live your best life, because your ostomy is a small part of you, and with better health, everything is possible.”

My daughters, Allison Gollin and Emily Golden had this necklace made for me to celebrate the book. It is an exact replica of the front, back and spine. It is utterly amazing, and they found the artist on Etsy, of course! I wear it proudly every day. It feels like an outward extension of my stoma, Lily, and fills me with a security I treasure and appreciate.

I encourage all to scream their dream, as I did mine. Writing the book gave me a new title, that of Author. Having Lily gave me a new title, that of Ostomate. Working to bring awareness and meet the needs of our community gave me another title, that of Mighty Advocate of the Year for the United Ostomy Associations of America. And I have yet another title, that of a proud Ostomy Support Group Leader. These are all great titles, but the one that feels the best of all, is the title of Listener when a new Ostomate calls and needs to be heard, to have their fears addressed and validated. That feels very special, very, very special, made even more so when I hear the relief in their voice as they realize this is going to be okay, it truly is.

 

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