the doubt before the storm

For the first time in awhile, I think my family and I might have legitimately found a hospital who can help me. The first thing you should know is that this is a rare occurrence. All these hypotheses for seemingly rhetorical questions about my body might have a place to be projected into now. There’s a group of professionals in the city who seem willing and ready to listen to me. It feels too good to be true. That’s exactly why I keep feeling the need to compulsively remind myself that it very well could be.

Do you remember the last time you walked into a strange place and knew you would end up calling it home? I do. It was March of 2016, and it was the last emotion I expected to feel that day. The place was quite out of sorts, too: a local hospital. My mother and I arrived at the outpatient floor and I got this funny feeling. The syncope episode I’d had that morning seemed to flee from any and all corners of my mind, and all I saw was the bright, childlike, and almost uplifting decor of the pediatric ward. I just knew.

I went to meet a new neurologist that day. I expected nothing good to come of it. Over time, I stopped getting my hopes up for new doctors appointments. It was easy to. When you live your life desperately in search of answers, of course you’re going to want to count down the days- the hours, even- until you can finally begin to understand why your world spins differently from everybody else’s. That’s how things were for me for some time: my mom would hustle to get an appointment with a new specialist, I’d mark it on my calendar, prepare for it like it was the SAT, show up with a light in my eye, and leave overflowing with disappointment. That was my life back then. To say I was depressed would be an understatement.

This time was different, though. I sat on the bright orange couch in the waiting room hollow on the inside from the start. And by the time the valet boys pulled the car back around to the front entrance, there were little joyful tears slipping down my cheeks. The promise of that doctor still echoed in my head: “there is still hope.” Mid sentence, she looked me dead in the eye and told me that. I didn’t realize how faithless I was until the words tumbled out of her mouth. I still have no doubt in my mind that that moment was meant to be.

Her treatment plan didn’t work, and although I tried not to be, I was absolutely crushed. We stopped treatments in December after 5 hellish rounds. It has taken me until now to accept that what was starting to look like a last chance in actuality did nothing but dig me into a deeper hole. Since then, my condition has only declined. Although I’m not nearly as depressed as I used to be, for awhile, my mental state had reverted back to that familiar state of “I might not get better, but I’m not going to think about it too much.”

I’ve had this appointment with a world renowned specialist in the city for a bit now, but this time, I didn’t count down the days because I was praying for answers. I counted down the days because I was terrified of what I might hear. I’ve said it before and I will say it again; uncertainty is the essence of living with rare disease.

I was pleasantly surprised upon my arrival. The lady at the front desk greeted my family and I kindly and the doctor’s nurse practitioner was more thorough than every physician I’d seen in the past year combined. The entire team said they wanted to find out what was wrong and how to stop it. Yes, I’ve heard those words before. And yes, it’s difficult for me to see them as legitimate. After so many broken promises, that reaction is only natural, right?

So, after a detailed recount of every single health issue I’ve ever experienced (as you might imagine, that took awhile), the doctor decided to admit me at the end of July for some extensive testing. And though I’m far too tired and off kilter to count down the days like I used to, I can’t stop myself from daydreaming about positive outcomes, about leaving that hospital on my own two feet and with a new lease on life. I'm trying to think of a nice way to put this, but frankly, I am whole heartedly, undoubtedly terrified by the hope I'm feeling. You’d think I’d get used to hearing “I can’t help you” by now. Nope. The words still leave a bitter taste in my mouth.

As I sit here at 8 AM after another night of not sleeping, I think, what if? What if I walk into that hospital and feel that feeling again? What if, once again, another seemingly uneventful evening spent in bed writing is just the calm before the storm? I won’t know until it’s too late, that’s just how it is. I guess I’ll have to keep rolling with the punches in the meantime.