Hope- A Dangerous Force
I was 15 years old when I learned that hope was too dangerous a force to allow into my life. I was newly disabled (although it would be many years before I would ever use that word to describe myself) and I, naively, still had a lot of faith in my body’s ability to heal. I had been dealing with severe, constant headaches for the last year and after seeing dozens of doctors and trialing medication after medication with no relief (and now a whole host of side effects), I was hospitalized and my doctor suggested an IV treatment as a last-ditch effort. I don’t even remember now what the treatment was, and although it was presented as my only and last option, I was given reason to believe that it would work. I was excited, certain that we’d finally stumbled upon the right treatment and I, after a year of unrelenting suffering, might finally have the chance to be a child again. All my eggs were in this IV basket.
In typical Bryanna fashion, I had a bizarre, unexplainable reaction to the medication and we had to cease the treatment immediately. I remember my neurologist sitting across from me as I lay in the hospital bed, putting his head into his hands, sighing, and saying “Uh, well, what do you think we should do now?” I was discharged with no further treatment plan. My memory of those years is hazy and full of holes, but unfortunately, I will never forget the way I felt when I got home and had to text my friends that the treatment didn’t work. I remember lying fully clothed in an empty bathtub and sobbing while thinking “this is my life now, and no one is coming to save me.” The weight of every previous treatment’s failures overwhelmed me as I came to the realization that I had no options left, nowhere to go, and I was never going to be me again. This was my first real taste of that kind of soul-crushing disappointment that, over the years, has made itself a permanent fixture in my life.
I made a promise to myself that day- keep your expectations low and you can never be disappointed. For the most part of the last decade, I’ve stuck firmly to that mantra and it’s served me well. I did occasionally get my hopes up for procedures, as I did last year when I had a spinal cord stimulator trialed and failed, and it destroyed me every time, bringing me right back to crying in that bathtub as if I’d never left. My mom and I, both without telling the other, had fantasized about taking videos of my “miraculous recovery” when I woke up from anesthesia; neither of us were expecting the (once again, unexplainable) agonizing pain and the immediate knowledge that the procedure had failed. Worse than the disappointment, though, is the anger I feel at myself- for knowing better and still letting this happen, for not learning anything over the past 12 years, for letting all that heartbreak break me for nothing.
I write this essay now as I reach another precipice of another “last option” treatment, an intrathecal morphine pump that I will be trialing in a few weeks. Without meaning to and entirely against my will, I have become very excited about this procedure. I believe it will work and so does my doctor. I sit in bed at night fantasizing about what my life might be like if it works- about travel, hobbies, activities I’ve dreamed of doing but couldn’t because of pain. This is, to put in lightly, a really dumb thing to do. When I catch myself doing it, I feel my heart drop as I immediately begin to berate myself for prematurely getting my hopes up. I am already planning for how I will cope if this procedure does not work, because there is a not-insignificant chance that it will fail, and I know the way that grief will consume me. Just the thought alone of yet another doctor telling me that I’ve exhausted all their resources and that there’s nothing more they can do for me makes my bones liquify, and I can feel myself choking on that tangible ball of despair that’s forced its way into my throat so many times before.
I am damned if I do and damned if I don’t. Hope is human. Not allowing myself to feel hope of any kind, to give in to the idea that my condition will only continue to get worse and I will never find relief, is certainly no way to live. It becomes very difficult, maybe impossible, to find joy in anything, to drag myself through the motions day after day and pretend that I’m not dead inside. I’m sure there is some kind of fine balance, a way to feel hope without allowing the reality of disappointment to trample your spirit, and perhaps if I decide to speak to a therapist instead of screaming into the faceless void of the internet, that is something I will come to discover.
