(adapted from a Facebook post from December 7, 2015)
“you should write a book! You have so much to tell and encourage the world.”
these words came from a receptionist from Dayton Children’s Medical Center. I was visiting the hospital for the first time since I was sick in the outpatient Hematology/Oncology unit. She was the sweetest soul and made me feel like an exceptional human.
her words are partially the reason I started this blog. While I’m not sure how I could write a book yet, I felt this would be an excellent place to start sharing my side of the mountain with whoever would listen.
leading up to June 3rd, 2015, when I had my ostomy surgery, I had no idea how my life would pan out. I had already missed so much of the end of my senior year, including trips, 2/3 nights of the spring musical, countless school days, concerts, connections. I barely remember graduation among the fog of 13 medications and narcotics because I mostly remember wondering why I was there and wanting pizza.
these were only a few consequences from my out of control IBD. I was encouraged to consider surgery in mid-May, but I first wanted to exhaust all my options, not pursuing surgery until it was necessary. Early morning of May 31st, I had my worst hemorrhage to date at Dayton Children’s, the sixth time I had hemmorhaged in a five month period. It was then, while looking at my mother, that I found the courage to say that this was the final straw. On May 31st, 2:19pm, before getting transported to the Ohio State James Cancer Center for hematology, I wrote this letter to my colon. To me, it signified acceptance, reviving my sense of humor that felt long gone, but also accepting that though my life was changing, I was alive.
A letter to my colon:
You served me well most of my young life. We had some great times full of laughs and moments I’ll cherish forever. But lately, I’ve been sensing a tension between us. I tried to understand your needs, but it’s just gotten so hard lately that I think it’s time we parted ways. After careful analysis, I realized, it’s not me, it’s you. I hope you can find something better at the NIH, and wish you all the best, but seriously, screw you.
immediately following surgery, I looked down and saw my fresh new bag on my abdomen. I’ve heard many other ostomates describe that moment with grief, but I almost cried tears of joy. This appliance saved my life, and I would never, ever have to go through what occurred in the previous six months. It was a bag of hope, and it was beautiful.
My colon was named Siegfried, the sick sigmoid colon, and after bidding him adieu, I named my stoma (partial intestine) Celeste because she came from heaven to save me. Celeste has been a gift, just like all the people and prayers supporting me at that time. Sometimes things still happen, but it’s much easier dealing with Celeste than Siegfried!
around this time last year, I was preparing myself for follow up surgery to complete my ostomy. Once that was over, my new lifestyle was made permanent. Every day, my bag is a reminder of how God allowed me to transcend death more than six times, so I know His purpose for me has not yet been fulfilled
people often feel sad for me, that having multiple disabilities should be a cause of great concern and pity. Yet God has given me a lovely life where I can go to school for a degree, be in a sorority, have friends from all over, and honor Him.
I’m so grateful to all the friends I’ve met because of it through advocacy groups like Girls With Guts. We often get accused of being too badass for other people, but it’s just another one of the titles I can bear. Life is lovely, messy, and mostly short, but like the phoenix, God had raised me up again and again
we’re all just doing the best we can
have a sunshiny day ☀️