It was difficult to shift gears from one of the most difficult months of my life to throwing myself into attending the United Ostomy Association of America’s (UOAA) Conference in Philadelphia, Pennsylvania. My nephew Adam’s terribly aggressive illness and death so fresh in my heart, and knowing the sadness that surrounds the life of my sister, Michele, and brother-in-law, Ira, were not forgotten, but safely put aside so I could do what needed to be done, and with that in mind, I moved forward. I had big responsibility at the conference, and that included speaking to the Advocacy session (dressed in a cape with a mask since the speakers were called Superheroes!) as well as working on the coordination of, and commentating on the Fashion Show. (Additionally, my goal is to Support and as an Affiliated Support Group Leader, there were other responsibilities.) Both went wonderfully, and my heart was full of love and appreciation for the opportunity to attend.
The term “life-altering” is used frequently, and I would never question what that means to each of us. But my experience TRULY was life-altering in that I met the most amazing people…those living their lives to the fullest despite having a pouch/bag (ostomy) for either urine or stool. The camaraderie was exceptional and inspiring, and I want to share a few memories with you:
- Melissa Marshall is a fantastic performer and she is very well-known in Atlantic City. She performed two nights for us, even writing her own songs about the UOAA and how it brings us together! Wonderful entertainment!
- Our Fashion Show was incredible because we had 11 models who not only looked gorgeous, strutted the runway, sashayed and waved, smiled and strutted, but a few even wore their ostomy pouches with glamorous and even fun covers. Some are professional models who actually model this way, some are authors, grad students, social workers, etc., and all are living their lives BEAUTIFULLY! I loved working with them and thank Marilyn Smith and Sarah Mays who brought the clothes from Michigan for the show. I was particularly thrilled to have my husband, Bruce, and my four children, daughter, Allison and her husband, Dave and daughter, Emily and her husband, Jeremy. They completed the experience and made my heart sing with gratitude!
- I met a young man who was suffering emotionally from the effects of his ostomy until he met other young people just like himself. These young people actually had their own classes and places to bond, and last I heard, will be staying in touch with each other forever!
- Spending time with ostomates, from Susan Burns, the president, to the people who simply wanted to share their stories and learn all they could from each other, the classes we were so fortunate to attend, to a Fun Run sponsored by Nu Hope, a vendor of supplies, was just incredible. There are no airs in a group like this…we are all the same, and thrilled to be alive!
The misconception is that an ostomy ruins one’s life. In truth, our ostomies give us life, give us health, and give us strength. I am so proud to be an ostomate and look forward to many, many conferences in the future. A salute to the theme of this one…INDEPENDENCE IS IN OUR BAG!