To be a community caregiver

Embracing Disability

Related Posts

“Excuse me.”

I am taken aback by someone talking to me in a public restaurant in another state. Dad and I are having dinner at an Italian place across the street from our hotel. We can see the Gateway Arch swaying in the heat, and I sympathize with the monument. 

I know I shouldn’t have come to a conference halfway across the country only two weeks out from major surgery, but at least I’m vertical, right?

The woman who approaches our booth is older, and I quickly identify her as part of our conference group, her nametag lanyard a dead giveaway. 

“I just wanted to tell you, you are so inspiring! I can’t believe you are so young and you have to go through this.” I wince, feeling my cheeks burn as her head does that little tilt of pity. Is this a side effect of the hardcore antibiotics I’m on?

“My husband had his surgery recently,” she continues, “and, well … we’re struggling.” She sheepishly glances toward a man who looks to be about her age lingering by the big windows. His pants are hiked nearly up to his breastbone and secured with a thick brown belt; he is clearly the ostomate. 

My dad beams with pride, allowing the interruption to his fettuccine.

“Thank you,” he says on my behalf. 

I want to ask if she is going to the significant other/caregiver support group later, but I’m thoroughly exhausted from an entire day of acting like I’m not about to fall over or vomit.

I’m clearly not recovered from my revision surgery (which of course resulted in minor complications) a few weeks ago. But it’s OK — I’m heavily medicated. 

“Thank you,” I finally say. “It’s so nice to meet you.”

It was the year 2015 and I had just begun my junior year of high school. I was serving as secretary to our local United Ostomy Associations of America, or UOAA, chapter, Marin Branch, while my dad lovingly took over the presidential position. 

We flew all the way from Oakland to St. Louis to be at the UOAA National Conference, which is arguably the most important ostomy event ever. It only occurs every two years, and this was my first time attending since 2003, when I was 4 years old and our car broke down in Death Valley on the way to Las Vegas. 

Clearly, I had very good reasons to fly across the country on death’s doorstep.

My identity lies within my community, one that I worked so hard to be a part of. I knew I wanted to help other ostomates ever since I figured out that I had had my ostomy longer than most of them already at just 10 years old. 

I was always “too young” to participate in anything until I was 18, so until then, I was most often relegated to representation for the Youth Rally camp, a summer camp for children with bowel or bladder diversions. 

Camp was fun, and I made some friends I am still close with, but I quickly aged out of it and wanted something more: a community of only young adult ostomates, all needing support at the most challenging point in their lives.

I learned at a very young age that whether people pity me or reduce me to inspiration porn, these reflexive delineations afford me a unique voice in the community. 

The UOAA treated me like family from day one at that first conference in 2015, practically stealing me away from my dad to whisk me away to the zoo, the pool, a nice restaurant and even a shopping trip. They spent the entire day dutifully pushing me around in the provided wheelchair, after they had only just met me the day before, and didn’t complain one bit. 

These people were just as sick as me — sometimes sicker — and yet they approached life with such positivity and determination, as if nothing stood in their way. That’s when I knew that this was my family, that I wanted to be an activist in this community. 

I became a co-leader of the UOAA Golden Gate Chapter, Marin Branch when I was 19, and I now serve on the board of directors in an effort to diversify our community of patients. My job includes picking up supplies from people whose family members have died and collecting ostomy supplies to ship to a nonprofit that provides free ostomy products to patients in underdeveloped countries. I listen to people who’ve had cancer; those who’ve had two ostomies; and those who’ve been through hell. Sometimes they garner hope from me, and other times, I garner hope from them.

Last year, in the time of grave uncertainty, I began serving on three different national subcommittees, co-chairing two of them: the education committee, the pediatric education committee and the Young Ostomates Outreach committee. I’m a registered speaker with Ostomy 101, and sometimes speak to groups of parents with ostomate children. I even once spoke to a group of nursing students at San José State University with fellow ostomates, daring them to guess which one of us was the ostomate based on our outfits.

It’s a lot of responsibility, and I admit that I have a really difficult time saying no when someone asks me to take on something else. 

I love what I do, and I’m extremely passionate about it, but sometimes it’s difficult to switch gears back to a world where I’m the only one and not everyone wants to hear about hernia prevention or pancaking. 

But being immersed in different worlds is a side effect of intersectionality. 

As I constantly toe the line between ostomy advocate and college student, I remain aware of the fact that I am exactly the person I needed to look up to when I was a preteen with a colostomy. 

Ultimately, these two identities hold my proudest accomplishments.

When I agreed to be on the cover of Phoenix magazine in my softball uniform at 16, I knew that my story was going to reach exactly who needed it, and I remember this sentiment at every UOAA meeting I attend, from my branch and many others.

Chloe Moody writes the Monday column on being a college student with a disability. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.