As the months of 2015 passed with no sign of my health improving, our finances began to spiral. We started just randomly selling things from around the apartment. My hospital bills piled into the thousands and we played the all-too-common game of “so, which bill is getting paid this month? Cell phone or hospital?” My out-of-pocket monthly healthcare premium was $500 a month, and even with that, I still had co-pays for visits and prescriptions that cost us hundreds of dollars per month. We got used to putting things back at the grocery store, and on some of our worst days, would stand at the pharmacy counter, unable to afford a $25 co-pay for one of my cheaper medications.
Crohn’s continued to refuse to cooperate and going back to work was out of the question. On top of the stress of not making it financially, I was in and out of a wheelchair or with my cane, and most days, I didn’t want to leave the house because I was either in too much pain to, or I was ashamed of my inability to walk, or my limp, or the bruises that covered my arms from infusions and blood work while on blood thinners.
A night of many tears after having eyes stare down the bruises on each of my arms (blood thinners + regular blood work + infusions). They’d glare at Sean and then look at me, and on this day, I had enough.
Every day for as long as I could remember, I woke up to my pain—I didn’t know what it is like to wake up without it. I opened my eyes and instantly felt the heaviness of what it meant to live in my skin. My lower back throbbed and my arms ached and tingled from my shoulder cuffs to the tips of each finger. Sometimes I couldn’t straighten my arms beyond a 90-degree angle. Sometimes my legs swelled up to the point of needing a pillow underneath my knees because I couldn’t straighten them.
I felt diminished and without a purpose, and grappled with the loss of identity that seemed to slip from my fingers that year. Sometimes I’d think I was having an okay-enough-day to leave the house sans wheelchair or cane so Sean and I would go for a short walk, only to get a few minutes in and end up needing Sean to literally carry me in his arms back to the car.
Sean remained steadfast and carried us through in every way, but Hawaii of all places isn’t sustainable for two incomes, let alone one.
By October, we realized that this was no longer going to be sustainable in any way — my disease wasn’t improving, my doctors were lovely but were out of ideas, and financially, we were drowning. Deciding to leave the island was gut-wrenching; we knew we had to, but that didn’t make it easier. We had broken out of the cycle that we both came from and we made our own roots in a place of our choosing. We found what home was to us, and it wasn’t about where we came from — it was about where we could go together.
At the time, we identified Hawaii as home, but now, I realize that home is anywhere where Sean is.