As a writer, there are so many things I wish I’d written: Chimamanda Ngozi Adichie’s “Americanah,” the pilot of “Fleabag,” or a song by my favorite band, HAIM. “Hallelujah” was released on Monday and is about saying thank you. One of the verses deals with chronic illness and the support that people offer.
Sometimes I get my thank-you’s right. My mother taught me well, and I am as polite as they come. But I fall short on other occasions. I write emails instead of saying things to people’s faces because my emotions get the best of me. Also, my existence is based on complicated logistics, which means I often drop the ball.
Living with a chronic illness is akin to managing a bustling kitchen. You go from one stove to the next so that nothing burns. Or, you ensure that your diners don’t end up with food poisoning because you undercooked their meal. We manage painful symptoms while keeping up with work and daily activities, navigating hospitals, balancing social engagements, and recovering from procedures. Every day, we are forced to make dozens of choices that will impact how we feel and function.
Often, we close ourselves off, tired and done with it all.
It’s no surprise that we fail to acknowledge help or remember to value a love that is unequivocally and unconditionally present. To my profound shame, I sometimes suck at appreciating one person in particular, someone who strives never to let me down.
Before I go any further, I must say that it takes a particular kind of person to offer support. Since my endometriosis diagnosis, I’ve found that most people look the other way. Not everyone is made to be a hero.
Not everyone is wired to offer help, naturally and unreservedly.
I’ve known “my person” for over 15 years. Defining our relationship with just one label would fail to do it justice.
He has been a guiding light for my foggy brain and a skilled nurse when I couldn’t clean my post-surgery wounds. He became a methodical cook when I was too weak to prepare my vegan, gluten-free meals. When I had to get to medical appointments on time, he was the safest of drivers. He was my No. 1 fan when I ugly-cried over blood-stained clothing and bedding. My loyal spokesperson defended my right to cancel plans and rest. He took offense when doctors told me that getting pregnant would “cure” my disease and explained endometriosis to people who didn’t get it.
What makes this person particularly special is that despite my life-sabotaging illness, I don’t depend on him to live. He knows I can do all of the above on my own, but he still offers to help.
I am stronger than I give myself credit for and can stand on my own two feet.
But sometimes I can only lie horizontally. And every time, I have a hand to hold and to squeeze. I wish I could write something as beautiful as that HAIM song, but this is all I have: I hate this illness. I wish it would go away. I wish you didn’t worry or care, but I am glad, blessed, and grateful that you’ve been there for me.
Now my hero is heading off to run a 74.5-mile Half Marathon Des Sables in the Peruvian desert because his 9-year-old niece was recently diagnosed with a rare form of brain tumor. You see, true heroes get few holidays.
I want to thank those who support us every day. We could write you a poem or sing you an acoustic album. We could paint giant heart murals on street walls. Some of us might even tattoo your name right above our hearts.
We thank you because today, we can. We were focused, healthy, and pain-free enough to remember, and it matters that you know.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.