Before I got sick, I was an athlete, racing all over North America and Europe and competing in distance races as a cross-country skier. Then, in 2010, I got injured from overtraining, which resulted in two bilateral leg surgeries to fix the damage.
After the second leg surgery, I was suddenly unable to keep food down.
My gastroenterology doctor’s theory is that the leg surgery caused a cytokine storm in my body, which killed my gut organs and damaged my vagus nerve.
I have undergone every test, procedure, study, surgery, treatment, and medication imaginable and have spent weeks in the hospital for complications like sepsis, blood clots, and electrolyte imbalances.
I have an ileostomy, a J-tube, a G-tube, and a central line, which together feed me directly into my heart. Also, I semi-regularly use a wheelchair. I have a medical alert service dog and carry a medical backpack that is hooked up to my IV for nutrition and hydration. My ostomy bag hangs off my abdomen, my G-tube drainage bag hangs from my waist to my knees, and my J-tube causes sharp abdominal pain every time I cough or bend over.
I think I do an okay job handling each new medical device, quickly learning how to use it. The medical equipment, while risky, is easier to cope with mentally.
What is harder to cope with is knowing how much my disabilities have caused my family and loved ones to suffer and worry.
In the last two years, I’ve gone downhill quickly and spent months in the hospital. We joke that they need to designate one private room for me for when I get sepsis, a blood clot, or have some other emergency. But it’s not actually funny at all.
The hardest part of my disease is not fighting sepsis, albeit that is misery. It’s not being hooked up to lines every minute of every day, or the pain of the tubes inside my body.
What hurts the most is facing reality. I will have to decide what to do with my service dog if I pass away. I also have to listen to my loved ones telling me how devastated they’d be without me.
It makes me cry just thinking about it. My family would recover and live happy lives, even my dog would. But the thought of leaving them behind scares me so much that it keeps me up at night. I’m not ready to have this illness take me down.
I fight hard to stay alive for my family and dog. I adore them and will go to any lengths to save them from suffering.
People who see me out and about are amazed by my positive attitude despite all I live with. It’s also helpful to hear these kind compliments. But for once, I’d love to hear, “We will be okay if you pass.” After all, I have no control over my mortality.
I’ve been fortunate enough to survive sepsis 8 times and still have my faculties intact. But what I cannot change (and wish I could) is the impact my conditions have on my loved ones. I constantly worry about what will happen if I die.
As someone with a very severe chronic illness, I don’t wish to hear how much I’ll be missed. I wish to hear that you’ll be okay, that you’ll continue living your life, and that you’ll take care of yourself.
I can’t help once I’ve passed. And worrying that you won’t be okay hurts. It doesn’t make me fight harder; it simply makes me more afraid of the future and my illness.
Featured image via Stephen Andrews on Unsplash
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Living with a chronic illness, I often wish people understood that support doesn’t always mean solutions. What I truly adult night care near me Los Angeles need is empathy, patience, and someone who listens without judgment. Simple affirmations like “I believe you” or “I’m here for you” go a long way in making me feel seen and supported.