My Community Is the Only Reason I Continue to Fight My Chronic Illness

Did the surgeon just say I had three cancers at once? That can’t be right, I think. I try opening my eyes wider to look coherent, which is laughable while on Dilaudid in a hospital bed. The doctors keep sharing terrifying details of my case while I try to keep up: Ovarian cancer. Endometrial cancer. Colon cancer. Lost four organs, 65 lymph nodes, nerves, omentum. Definitely need chemotherapy.

I had something called “the field effect” which is multiple cancers at once. Not uncommon for people with my genetic disorder, Lynch syndrome. In the general population, however, it’s unusual to have several primary cancers at the same time – statistically on par with being struck by lightning.

I had melanoma at 39, so that’s a a grand total of four unrelated cancers by 42 years old.

The surgeons drone on and I hear, “You’re lucky to be alive.”

Yeah, I’m real lucky, I think, as the pain medications suck me under. My mind saturated with terrible news, drifts back to sleep.

It’s been exactly five years since that surgery. Five years of one medical crisis after another. Five years of my former life gradually being stripped away. First my energy, then food, then my career, money, apartment, independence… I write this while sitting on my former bachelorette couch wedged into my brother’s old bedroom in my parents’ basement. My feet cocooned in an electric foot massager that my best friend gave to me to make my life a tiny bit more comfortable.

Due to all the complications, I have been deemed disabled by the U.S. government, a process that took three long years. My health is too unpredictable to commit to an employer. Instead, I pass my days begging doctors to work on my case and spending my paltry checks from the government on out-of-pocket treatments to improve my digestion that Medicare won’t cover.

Because my sensitive digestive tract was chopped up, I can barely digest food. I subsist on homemade chicken broth, runny eggs, avocados, vegan ice cream, teas, juices, and nutrients from a daily IV bag. I battle chronic dehydration and require one to two liters of saline per day. I’ve had bowel obstructions, chronic fatigue, an infected port that almost went sepsis, cancer scares and lately, a crushing depression. I’m on eight hormones and do my best to use my nutrition education to keep my body at a steady weight. Every day, I walk, stretch and do belly exercises in order to reduce pain and move the little food I do eat through my dysfunctional gastrointestinal tract.

There are so many things wrong with my body that I often don’t tell people everything because even a small part of my story tends to horrify them. To make things even more complicated for my mental state, I look like the perfect picture of health! Due to my many years as a nutritionist and an athlete, my outside does not reflect my insides.

I toggle between wanting people to understand how awful things really are and wanting to protect them from the gruesomeness of my existence.

It’s still not clear to me which part of my life is the hardest.

Not working and being trapped at home in bed and near a bathroom is definitely challenging. Being unable to eat hardly anything is torture.

Food used to be my life. I ran a cooking program for adults and kids in New York City. I devoured meals prepared by extraordinary chefs. I wrote a cookbook and was on Sesame Street! I went dancing at night and running during the day. Unmarried and free-spirited, I traveled as much as I could afford. After battling Crohn’s disease for 10 years as a young woman, I knew how fortunate I was to have the freedom and independence to live life on my own terms.

I do what I can to emulate my old life as much as possible. I’ve stayed busy as a healthcare activist for the past two years, advocating for my fellow chronically ill and disabled patients. It was a huge honor to receive the Golden Tennis Shoe award from Senator Patty Murray last year for my work to protect the Affordable Care Act. I share my story with my online community who keep me company since I’m often homebound. Recently, I started a podcast so that I can “work” from bed and stay connected to the outer world. I spend as much time as possible with my eight nieces and nephews who keep me present and laughing. I tell them their love is magical and heals me. It is. It does.

I try to be open about how much I struggle with mental health issues now. I want to model to the kids – and other adults too – that it’s OK to share that we’re having a hard time.

But I haven’t shared what a difficult time I’ve been having with this five-year anniversary. Until here. Now.

I usually love to celebrate an anniversary with my online community! This time, I’m more scared than excited about the next five years – if I get that long. For me and other Lynch syndrome patients like my dad who has had three unrelated cancers and is missing his stomach, colon and part of a lung – it’s not a question of “if” something will go wrong. I have to live with “when.”

It’s a heavy weight to carry.

This is why I’m so grateful for my community — my family, the kids, my friends and my online community. I was chronically ill once, before the Internet existed. I know how lucky I am to be able to write online and get support from an incredible group of people that always have my back and cheer me on. I tell them all the time that their support and advice saves my life. More than anything, it’s a relief to not feel alone when I’m stuck at home. When I write for them, when I let my deeply emotional words flow through my fingertips and travel into the digital world, they dissipate from the dark, painful lump of coal that used to sit inside me and burst into a thousand little diamonds. Friends and family each kindly catches one, lightening my load.

The most beautiful part? When I’m having a really rough time, and the pain of it all makes me wonder how I can continue, I share my heavy words with them, pour it all out of me. And without hesitation, they hold up their diamond pieces in the air along with their own personal gems to create a gorgeous kaleidoscope of luminous light, reminding me they’re there to support me and reflecting my own light back to me while I carry on through the darkness.

It is only because of them that I can continue.

It is only because of them that I keep fighting.

It is only because of my community that I keep crawling through revolting mud in the pitch-black tunnel, knowing they are there, patiently loving me and guiding me through with their light.

Follow this journey on Julie Negrin

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