This year I’m starting a new series called Own Your Crohn’s (OYC) TrailBlazers in which I share stories of other chronic illness warriors and their experiences. And who better to begin this series than my father, a long-time veteran of Crohn’s Disease?
Dr. Moti Aswani was born in New Delhi, India, and came to New York to study at the age of 21. And, oh, did he study! He held five degrees: a Bachelors, Masters and Doctorate in Electrical Engineering and Masters degrees in Philosophy and Business Administration. He was a Senior Systems Engineer for the prestigious Bell Labs in New Jersey for many years thereafter.
On paper, he was an academic and professional star. But internally, he lived with an invisible yet life-altering secret: inflammatory bowel disease. Since the age of 15, Daddy suffered from long bouts of constipation. After he migrated to the US, he continued to suffer and was diagnosed with Crohn’s colitis at the age of 22 with symptoms of rectal bleeding and severe abdominal cramping. By 25, his gastroenterologist urged him to consider surgery to remove portions of his large intestine and live with a permanent ostomy.
Daddy decided against surgery. To be young and in need of such major surgery is not an easy pill to swallow. Neither is the shame and stigma of living with a bag attached to one’s abdomen. What would people say? How would people react? Would he be shunned from society? The Hindi phrase, “Log Kya Kahenge?” (“what would people say?”) plagued him as he considered his options. Instead of taking the surgical route, Daddy began to take Prednisone, a corticosteroid. At a time when little was known about the long-term impact of steroid use, he was taking Prednisone day after day for nearly 15 years.
After finishing his education and starting his career, he was married to my mother. Soon thereafter, I was born followed by my younger sister. But the scourge of illness never left him. As he put on 25-30 lbs and developed moon face from the steroids, his bones became brittle and his nights sleepless. And he bled day and night. Enema after enema, hospitalization after hospitalization, he was told at the age of 37 that his IBD had progressed into colorectal cancer. Daddy finally underwent colectomy surgery and was given an ostomy. He received weeks upon weeks of chemotherapy and radiation, but as his weight slipped and hair fell, the beautiful life that he had built for us quickly crumbled. The cancer had spread to his liver as he slid into a coma, and one by one, his organs failed. On January 30th, 1992, he passed away at the age of 39 with my dear mother by his side.
Today marks 27 years since Daddy’s passing. I was 8 years old and I remember that morning like it just happened yesterday. I woke up with an inexplicably bad feeling in the pit of my stomach. As I tiptoed down the stairs, I heard my relatives and my mom sobbing. And in that moment, I knew. I knew he was gone. I knew I could no longer sit on his lap every morning and share breakfast from his plate. No longer could I pick out a random green shirt for him to wear every single day. No longer could I fly remote-controlled helicopters with him in our yard. No longer would he part my hair and comb it ever so perfectly every morning. Poof… Just like that, he had vanished from a life where I was known as “Daddy’s little girl.”
Daddy was a brilliant IBD warrior and is until this day my hero and a trailblazer. In the legacy Daddy left behind, with it, came the Crohn’s Disease. Do I ever wonder if a colectomy/ostomy surgery at 25 might have saved him from developing cancer? Yes, always, but I also know that hindsight is 20/20 and not much was known about IBD in the 1970s. Moreover, the stigma of living with an ostomy was and still is paralyzing, not just for South Asian Americans but for so many patients worldwide. If there is one thing I could tell him today, it would be that IBD and life-saving ostomy surgery are not black marks on our beings. They are not a stigma. They are our reality and my remaining connection to my father. His struggle gives me motivation to continue my never-ending battle with IBD; his struggle gives me reason to continue advocating for those suffering in shame and in silence like he did (and I did) for many years. Because we deserve life, love and joy just like everyone else does.
Daddy may be gone but his spirit and legacy are still very much intact nearly 3 decades later. From our shared struggle, my meaning in life – my advocacy work and blog – were born and I continue to move full steam ahead to create awareness and advocate for disability justice. Daddy, you have blazed the trail for me and it is my life mission to carry our torch forward. May your soul always rest in peace, my dear warrior.
So, own your Crohn’s, own your ostomy, and don’t let fear of the unknown or shame/stigma stop you from living your best life and being your own best advocate. Life is too short to fall prey to fear and taboos; we must do what’s best for our health regardless of the dictates of society. Live boldly, live beautifully and live to be the best versions of ourselves.
~Love, light & peace always~
**As always, thank you for your readership! Please feel free to share any comments you have! I would love to hear from you all!**
Copyright 2019 Tina Aswani Omprakash. All Rights Reserved.