I had a long blogpost planned and I’ve yet to learn the silly lesson that things just don’t work out as we plan… I really need to submit (What an awful word) to the universe on this one… because I’m awake and I’m so sick and my wretched insides are eating me..
I was able to connect with one of my dear ones yesterday (Friday now) about life… where I am… where she is… health, family, kids, what’s next… making a date to get together soon… and I told her that the past few days have been better… and holy what the fuck I’ve spent the last 9 hours in unrelenting pain, throwing up and dehydrating… I need to learn… Don’t jinx that shit… Things were stable for three days… okay… maybe two… and then hours of puking into double lined plastic bags… debating about and ED trip… Nope… not doing it anymore…
When I was little my grandma used to tell me that what doesn’t kill you makes you stronger. She was incredibly well intended. She believed it… and then life happened and my illness began to manifest itself in my life regularly and I slowly learned that what doesn’t kill you don’t make you stronger… it makes you fucking angry and sad and real and raw and what doesn’t kill you just doesn’t fucking kill you… that’s it… it. doesn’t. kill. you.
I get frightened. My dear friend said, “It seems like you have been sicker.” (I think she was meaning on the days I am sick…..) and she’s right. The bad days are bone aching, skin crawling, guts spewed on any once-clean surface and having a true heart-to-heart with myself to get my ass into the shower… those days don’t make me stronger… they make me want to crawl into a hole.
This past week brought a peace of sorts… let me say I despise winter and snow… I have no iron so I am always cold (yes I get infusions) so walking the dogs rattles my skeleton. I avoid leaving the house at all costs except for Tuesday’s when I go to Whole Foods and Target… I love Whole Foods and Target (with a quad grande skinny vanilla latte in the process!!!) It snowed on Tuesday and school had an early dismissal which gave me extra hours with my main man and a peace that seemed to resonate deeply within the layer between my subcutaneous tissue and my skin.
I stared out the window for the moments I did at utter and extreme peace… fuck, it could have been thirty seconds, but I felt peace. It was me and the beauty and stillness of the world… for those moments… and I’ve come to learn very quickly that those moments are really what life is about…even if they are short… or long… or medium… take those beautiful moments and hold them every so delicately… enjoy them… relish in them… because they might be the last.
My brother died in October of 2011. It was sudden and very unexpected. We had dinner plans for the following weekend… and then he was gone and I was giving a eulogy with my sister on the morning of the evening that my family was supposed to join his for a traditional polish dinner…
We never had that dinner… and I never again leaned up on my tippy toes to wrap my arms around his always freshly shaven neck. He would pick me up off the ground as I hugged him. I remember the last time I hugged him. Today I browse retail stores to smell his cologne. If I knew then that I would never have had that dinner, I would have insisted we do it 10 days earlier… Don’t waste time. We only have now.
Living with chronic, life shortening, incurable set of illnesses is hard… especially when I love predictability, reliability and structure… every day is different…. and they each begin with a long pause after my crusty morning eyes open to take inventory of pain, nausea, dizziness or eye spots (from low sugar), shakiness. CHECK!
Feet hit the floor… pause… bp drop… re-acclimate… bp stabilizes.. and SAME. Same. Same…. Every. SINGLE. FUCKING. Day.
and no.. to every single person who tells me to “Get Well Soon…” There is no cure friends… I sat with my great “talking doctor” about one of my bucket item lists… the big cross country surfing/exploring trip.. 3 weeks trip or so and he got at… -I don’t want you to be on hospice and say… I wish I had taken that trip… or I wish I had written that book… or I wish I had…-
That’s what my main focus in life is… for all the unknown days… I will follow the nagging pull in my should. I will drive across the country and if it takes 3 weeks and 4 days. I will publish my 1/2 written memoir. I will live in all the moments I can… Every moment I let Ale’s fully body, belly laughter wash over me… it is he and I and his glorious laughter… I will stop what I am doing when one of my favorite songs comes on and I will dance WHEN no one is watching because it is THAT bad. When I can see my closest people I will… even if I am puking into triple lined plastic bags… because they are THAT important to me.
I will live.
For you JC.