I am a month away from graduating from Chatham University. Shortly after, I’m expecting to have a kidney transplant.
In many ways, my college experience has been typical — although pursuing higher education while managing various chronic illnesses has been challenging both physically and emotionally.
I was born with a cloacal anomaly, a rare condition in which the gastrointestinal tract, urological tract and reproductive tract form a single opening rather than three separate openings during fetal development. My kidneys were damaged because my bladder was unable to empty in utero, and I’ve known since I was young that I’d need a kidney transplant. The cloacal anomaly also meant that, for as long as I can remember, I have emptied my bladder by inserting a catheter into a hole in my abdomen called a mitrofanoff and, every other day, I’ve had to undergo an enema routine.
For most of my life, these medical routines have been a normal part of my day. When I was very young, my parents found ways to make my enema routines more tolerable by playing movies or reading books to me while I did my flush. Although the routines that I had were different from most of the kids I knew, I never viewed them as disabling or something that drastically constrained my life.
This is partly because of the supportive care shown by my family. My conditions were not referred to as a disability by anyone around me, and my family had always made sure I wasn’t the only one accommodating my health needs. If I had to slow down on a hike because I was tired, they slowed down as well. If I couldn’t eat solid foods before a procedure, they didn’t eat solid foods either. I was raised with the belief that the different ways in which I went to the bathroom were a unique part of my experience, not something that hindered my quality of life, and in many ways that was true.
I’m honoring my three kidney donors by trying to stop others dying before receiving theirs
It wasn’t until learning about the evolution of the disability rights movement in America during my third year of college that I even considered applying the term ‘disability’ to my conditions. I was hesitant at first, but I couldn’t deny that I often felt burned out by the end of the school semesters, and the first things that became difficult to manage when school got busy were my medical routines. I had always assumed that struggling to balance everything was just another aspect of growing up and that eventually I would find it easier to maintain my medications and those routines that I sometimes forgot.
Then, in the summer of 2023, I met with a kidney transplant team for the first time. I spent three days immersed in appointments and tests that left me mentally and physically exhausted while I learned everything I needed to learn before starting the kidney transplant process.
I learned about the immunocompromising drugs I would be put on directly after surgery and the importance of remaining consistent with them to prevent chronic rejection.
I learned about the weeks of recovery and how I’d be unable to return to my normal routine for at least a month even after being weaned off medication.
I learned about the many types of infections that posed the biggest threat to an immunocompromised body — including a virus that mimicked cancer — and I learned that cats and water filling stations are some of the most germ-ridden things in the world.
It was an overwhelming experience and I left that trip with a lot of conflicting emotions. On one hand, I was grateful to be starting the process toward a transplant and for access to the care provided. On the other hand, I was scared of what lay ahead and how much I’d have to manage just to take care of my health. I already felt like I was failing to keep up with my medications, and the prospect of taking on more — including some that required even more consistency — was daunting. It also made me realize that my hope of finding it easier to manage my routines as I got older was not going to magically happen; imagining a future with more medical management highlighted just how much energy and time I already spent on my existing medical routines.
Chatham administration shuns voluntary union bid, punting to NLRB
Recognizing how much of my life at college went to keeping up with my health was not something that happened instantly. Sharing my experience with friends — those without chronic conditions and who acknowledged they couldn’t relate — was ultimately what opened my eyes to how much my life was structured around my health needs.
For a long time, all I seemed to feel was anger and grief. I was angry for all of the times I had had to skip out on spending time with friends or campus events to take care of my enema routines, and how many of those times involved hours of resting afterward because I couldn’t leave my apartment without being exhausted or worrying about experiencing incontinence. I was angry that when I expressed frustration toward the treatments I had to undergo or the activities that I was unable to participate in, I was encouraged by some family members and doctors to look at the “bright side” that at least I was making healthy choices compared to my peers.
In reality, I wasn’t making healthy choices because I didn’t have choices.
My grief lingered for many months after the initial transplant meeting and even as the waves of panic and sorrow became less frequent, I still felt a deep rage that I didn’t think would ever leave. As I returned to school for my final fall semester, I hoped that being back on campus with friends and classes would distract me from this pit of rage in my stomach, but in some ways it made me more aware of it.
On Chatham’s anxious campus, faculty recount funding frustrations as deficit reduction takes hold
When I wanted to feel excited for my friends’ career successes and accomplishments, I felt jealousy at the fact that they didn’t have to plan for surgery after graduation.
When I wanted to look forward to on-campus events and social activities at school, I felt a cynical certainty that somehow my health was going to prevent me from enjoying the social activities that I wanted to.
When I wanted to feel encouraged and inspired by meetings with professionals in my field of study, I felt incapable of ever reaching their position.
Everything that I had loved about school felt like it was easily soured by bitterness, disappointment, anxiety and sadness.
These certainly weren’t the only feelings I had on a daily basis. It was easier to find joy than I expected it to be when I woke up each morning. After a while, even though I didn’t enjoy the moments of feeling angry or jealous or disappointed, I was glad I felt them because it reminded me of the things I cared about most.
The coexistence of anger and joy was not a new experience, but it felt bigger in the context of coming to terms with a disability and the impacts it had on my life.
While my fall semester was easily one of the most difficult semesters at Chatham, I found incredible support within my community of friends and some of the resources available through the school.
When I told my friends that I would probably need a kidney transplant within the year, three of them volunteered to go through testing to see if they could be a donor. To say I was surprised feels like an understatement. For several months, I wasn’t able to find the words to express my gratitude. I’m still not sure I’ve found them.
The counseling center at Chatham helped me find a therapist who could take my insurance and, by the end of October, I had started weekly sessions to begin processing some of the baggage that comes from living with chronic conditions and having major surgeries as a child. I applied for academic accommodations with the school and worked with my professors to implement them into my classes.
‘We were all blindsided’: Chatham University faces multimillion-dollar budget hole, lays off staff, cuts benefits
It took a while to get used to asking for and accepting help from people without feeling nervous or uncomfortable. I had kept my experience to myself for a long time to avoid the discomfort of opening up — because opening up had sometimes led to invasive questions. But the culture at Chatham was a stark contrast from my hometown in Juniata County. In fact, for a long time I thought the lack of follow-up questions when people learned that I had chronic kidney disease was due to a lack of curiosity, even a disinterest in hearing about my experience. It wasn’t until several people had carefully expressed support without asking further questions that I realized it was more of a respect for my privacy than a lack of caring.
I am a month away from graduating and my family and I are waiting to find out if the next potential donor is a match. The grief is still there at times, but it doesn’t make everything difficult like it used to. In fact, I’m glad I went through it because it was a needed reminder of how much support I have around me. It has also opened my eyes to the fact that sitting with my anger and grief could only help me so much before I let it pull me away from the very parts of life I was angry about missing.
At some point, I began to realize that I still held some responsibility for making the best out of a situation that could be exhausting.
An asthma attack gave me a mission: Provide people in the Mon Valley with the tools to survive
Over the course of this year, I’ve had many people ask me how they can support me and, by extension, how they can support people living with chronic illnesses and navigating college. There is no universal answer that I can give because what works for me will not work for everyone. Sometimes the things that work for me don’t even work more than once. However, the times when I have felt the most supported are when people have demonstrated a willingness to learn about the challenges that come with navigating college with a chronic illness from resources beyond myself, because then I am learning right alongside you.
Riley Brubaker is a senior at Chatham University. If you want to reach Riley, email firstperson@publicsource.org.
The Jewish Healthcare Foundation has contributed funding to PublicSource’s healthcare reporting.
