Yesterday, a gentleman asked me why I wasn’t “better” yet. It took me aback. He knows me well enough to have fired question after question at me about my health because his uncle and his brother and a buddy from forty years ago all have really serious health issues and was “commiserating.” I answered each question he has asked over the last few weeks.
I said, like I have ninety seven times in three weeks, “I have a chronic, life shortening illness. I am not getting better. My goal is to treat the symptoms and progression as effectively as possible to fully live each moment I can.”
His steely blue eyes pierced through mine. “That’s a horrible attitude. Getting healthy is all in your head. You need to get out there and work out. Get to the gym. Eat better. It’s all in your attitude.”
Now I’ll be the first to tell you I had a H O R R I B L E day yesterday. I am on pill 6/24 of a Decadron Steroid burst. I am testy. I am moody. I am sad. I am elated. I am full of nervous energy.
In my current state, there were few attainable options in replying… but with a sliver of self-preservation, hearing my grandmother tell me to never disrespect an elder, and an unfeigned frustration at responding to those kind of comments for the last ten years, I took a breath.
“I will take all of that into consideration and I appreciate the time an energy you’ve spent regarding my health.” He smiled. I didn’t.
He left and drove away.
“FUUUUUCCCKKKKKKK YOU! FUCK FUCK FUCK FUCK YOU.!!!”
The dogs scattered. My scream reverberated off of the newly painted walls and empty (thank god) home.
I don’t care what he thinks… or what anyone else does. I get catapulted back into moments and it kills me.
8 years ago Nitza and I sat in a doctors office with three pages of questions at the onset of a formal diagnosis. It became after business hours and he sat with us and took three phone calls with his wife wondering where he was. He told us he wouldn’t leave until every last question we had was answered and we felt safe and cognitively comfortable walking out of his office. Nitza asked him if I could hike Machu Picchu. It’s an 8k ft elevation “lost city” in the Andes in Peru. It is a 26 mile, three day hike. It’s been a dream.
He said, “If you want to hike Machu Picchu, do it now. Do not wait.”
We will never hike Machu Picchu. I lived in the “It will never happen to me. I will never get sicker.”
Well folks, I got sicker…. and sicker, and sicker and sicker.
I do all the right things. I live my life as a perfect patient in the little box that each doc has drawn. It’s lonely in here… but I do what I need to do. I take each pill. I take each supplement. I eat the shitty (no fruit, no veggies, no red meat, low glycemic index, frequent snacks, full liquid) diet. I take the insulin injections. I drink one Coca-Cola a day as a preventative and treating measure for when bezoars form. I walk 5 miles every.single.day with a puke can on each side of the treadmill with OJ (for diabetic lows), 3 bottles of water, and coffee to keep going. I push myself as hard as I can to normalize life for my boy. I throw up around 10-30 times a day. I keep going.
If it was as easy as eating right, lifting weights and being the happiest creature on the planet, well fuck I would have been cured 7 years and 364 days ago.
Today I cope. Coping is creative and fun at times. I do house projects (faucets, garbage disposals clean and purge), I play around with crafty things to experience the tactile feeling of sticky paint, soft wood, gooey matte medium.
I spend as much time with the boy as I can
None of that negates that my body is falling apart.
I do whatever I can.
I’m not going to get better. I will learn to manage my symptoms in a way that will prolong my existence until it’s not going to be prolonged anymore. It’s a very simple equation.
In the meantime, you will find me doing my best. that’s all I will ever promise. that’s all i ask of those i love around me. i will put in the effort until the pain outweighs the benefit. i pinky promised that… and i take my pinky promises very very seriously….