By: Chloe Moody
What would you do if your child was born with a rare, life threatening disease and given a colostomy bag just days after birth?
Probably the first thing my parents did: look for support.
My parents joined the UOAA in 2001, two years after my birth when it was looking like my ostomy would be permanent, and they started to consider the lifelong impact. Back then it was just the UOA, and my local chapter was huge.
There were over 150 members, and we were greeted by a conference room packed full of mostly elderly ostomates welcoming us with open arms and more support than we could ever ask for. Miraculously, there was one girl my age, a year older than me who also had a colostomy from a rare birth defect. She and I played barbies under the table every month while our worried parents were reassured that our futures were full of possibilities and promises.
Ten years later, this girl and I would become co-directors on the board of that same chapter while our fathers assumed roles of President and Vice President respectively, doing our part for the community that gave us hope.
It started when I was thirteen, actually. We hadn’t been to many UOAA meetings in years, having our weekends filled instead with home improvement and birthday parties. Going into middle school, I became very depressed, and went down a bad downward spiral.
I began hating my body, my ostomy and all it represented. I wanted to get it off at whatever cost, but my hopes were shattered when it was determined that I didn’t have enough intestines for any other options, much less enough to reach to my rectum.
In my devastation, my parents suggested it would be a good idea to go back to UOAA meetings. Once again, the support and community was overwhelming, and I no longer felt alone. It was a quick process to be a member of the board, the youngest in history, and an even quicker process to make plans to attend the upcoming conference in 2015.
That conference was what changed my life.
We had actually attended two conferences prior, in 2001 and 2003, but obviously I remember very little except having fun in the hotel pool! This time, I had just had a resection surgery that came with many complications. I was extremely weak and frail at the conference, barely even cleared to make the four our flight to St. Louis.
Nevertheless, the response from the young ostomates group was the same: accepting me as one of their own, like family, and showing me unconditional love and support. I was immediately invited to a nice lunch with them where they insisted I would not pay for my own meal, followed by inviting me to the zoo with them. I was too frail to walk, so my new friends took on the task of wheeling me in a wheelchair around the entire zoo, something I will be forever grateful for. I will never forget the kindness they showed me, particularly Alyssa, whom I am proud to call my fellow patient coach and the strongest person I know.
It was after this conference I knew I wanted to be a part of something bigger, to be an advocate and spread awareness and make my story heard.
I started writing for the Phoenix magazine, appearing on the cover in my softball uniform when I was fifteen. I attended regular UOAA meetings, made more friends and connections, and continued every day to tell my story and spread positivity. I proudly showed off my bag on social media, documenting every hospital admission to show that my life was unlike any teenager, yet I still showed up the next day for softball practice. Soon, I saw a call on Maggie Baldwin’s instagram for an opportunity to become a voice for patients, to coach new ones, and the rest is history.
Today, I am still a proud board member of the UOAA. My chapter has grown, and now have three locations across the Bay Area, two of which I regularly attend. Every month I make the 90 minute drive across the bay because I look up to these people so much. If I don’t show up one day, what if there is a new patient who is lost and needs support? For them, I go every time without fail, even bringing my boyfriend. My dad is no longer President, instead a strong lady in her mid forties whom I have the upmost respect for. She has taught me so much about leadership and advocating for yourself and I am so lucky to work alongside her supporting my community. I hope to be president of my own chapter one day.
I will never stop advocating for my community and giving patients a voice. This community has made a the biggest impact on my life and my families lives. I want to be that role model for my thirteen year old self, to be that person people see and think “if she can do it, so can I.”