Fun things to do in a hospital bed
This time next week I’ll be taking an important but scary step in my epilepsy journey: an EMU stay. Basically, I’ll be admitted to the hospital for up to a week while a team of doctors study my brain. The end goal of this is to quickly test several epilepsy medications over a short period of time to see if there is a “best fit” medication for me.
What this also translates to though is that the entire time I’m there I’ll be bedridden and actively attempting to induce seizures, something my life has revolved around preventing for almost six months now. Mindfuck is an understatement.
Being an adult (maybe an American one in particular) often finds me in an interesting position of having to fight very hard for something I barely want. Exhibit A: this EMU stay. When I first got diagnosed and was reading to inform myself, I accidentally read a study about all the interesting things they had learned from people who had died in Epilepsy Monitoring Units across the world. Morbid curiosity I guess.
It became clear early in my diagnosis that my epilepsy was fairly severe and potentially drug resistant. Scary, but it also means that I’ve been getting comfortable with the idea I would need this treatment from the beginning. The mental hurdle was one part, and the socio-economic barriers were another entirely.
Staying in the hospital for an indefinite amount of time is. . . indefinitely pricey. Not to mention the road to my diagnosis had come with a pretty significant price tag; two ambulance rides, overnight ER stays, and at least one Neurology visit all uninsured over the course of a month or two.
At that first appointment my RN (may the Universe smile down upon her) walked me through how to get signed up for the county health plan That Night so I could request our visit be covered. Months later the charge came off my account. That set the tone for the rest of the process, in hindsight.
Soon after finally getting enrolled in the health plan I called to schedule my EMU stay. . . at which time they informed me my health plan, under zero circumstances, would cover an inpatient visit. If only that wasn’t half the reason I had signed up for it. . . T.T
After I just straight up dissociated and digested all this information for several days I began looking into literally any options that may exist. Turns out the hospital I was staying at had a financial assistance plan; if I qualified it would wipe the debt I already had as well as covering my future EMU stay. The stars had aligned. Or, at least as much as they could in a broken country with a broken healthcare system as I navigated it with my fragile, short term memory loss ridden brain.
The application was complicated, and the department in charge of processing them was so behind that I couldn’t actually get through to the people that were supposed to help in the months I called.
Call I did though. Every few days, to different departments of different medical facilities or providers, begging strangers for any sort of help they could provide. At the same time I was having to process through my fear of the stay in general by reminding myself how important it was to my health. Each time I called and stressed how vital it was the reality of that sank in a bit deeper.
After months of back and forth I finally got confirmation that my financial assistance was approved and stay was booked, albeit ten days before my admission. When I found out it felt like my whole body released a breath I didn’t even know I was holding. I was trying my best to be cautiously optimistic throughout the whole process, but the days leading up to that phone call were particularly dicey.
Thankfully I’d already been using whatever optimism I could muster up to use my two favorite coping strategies: asking a friend and deflection via humor. I made a huge post-it titled “fun things to do in a hospital bed” and put it near my calendar and I’ve gotta say some actually useful stuff has been added on there. I also shared a video just over a month ago for my Birthday opening up about the EMU, my fear surrounding it, and asking for fun stuff to open during my stay.
Just a week away now, I’m almost nesting. I’ve begun packing away the letters and packages I’ve gotten, as well as some of the other things from the big post-it (including thank-you cards for everyone who will inevitably make my stay much more bearable). When the anxious thoughts creep in, I just try to reframe the “EMU stay” as my “hospitalization arc”, which every serious artist has, and try to delusionally consider it some rite of passage.
November is Epilepsy Awareness Month!
Did you know 1 in 26 individuals will be affected by epilepsy in their lives? This month I’ll be posting about my personal journey with epilepsy as well as some general info to help start the conversation! You can also learn about the basics here from The Epilepsy Foundation.