I’ve tried to start writing this post four different times and every time I stopped because I can’t seem to find the words to fully encompass what I’m trying to say, so bear with me here.
You know the feeling you get when you’re walking down the stairs and you’re not watching your step and you think you’re at the bottom but you’re not and your foot falls for a split second longer than you expect it to?
How your heart seemingly skips a beat.
The way your brain instantly freezes while simultaneously tries to make sense of where the ground is.
Your breath catches in your lungs.
And then you chuckle at yourself because you almost missed a step and fell on your face - but you didn’t. You found your footing and continued on.
That’s sort of how I feel about not knowing what’s actually going on with me. About not knowing what is causing this nerve pain. About not knowing what these tumor-like things in my brain really are. About not knowing what it will all progress to.
Except I haven’t gotten to the point of finding my footing yet. I’m stuck in the uneasiness of the unknown.
And let me tell ya what, that’s an exhausting place to be.
I know we've all experienced that feeling - waiting to hear back from a job interview, wondering if you're going to get a call from that person you gave your number to, not knowing if your new business is going to be a success, etc. It's freaky not knowing what's going to happen or where life is going to take you.
Most often, though, that feeling gets resolved; you hear back from about the job, that person finally calls you, your new business progresses.
Not that those always result in a perfect ending, often times life doesn't go at all how we want, but the uneasiness of the unknown goes away eventually.
Usually.
This unknown is one of the scarier parts of everything that is going on with me. I have this whole cluster of symptoms, it's clear that something is going on, and that whatever is going on is getting worse as the years go by, but it can't be pinpointed and it can't be named which means it can't be treated.
And none of this is to say I don't have doctors working and trying. I've tried many different medications and procedures, I've had every type of bloodwork, spinal tap, all of the scans that I've had access to.
I even went to The Cleveland Clinic and got a special type of MRI a few years back that was so new no one in the entire facility knew how to read it yet...
Anyway,
I've had many conversations with my friend Damian (the one I met in an Ollier's Disease Facebook group) about this. See, he fought and fought and finally got one of the "spots" in his brain removed and biopsied. He was told his "spots" were definitely tumors. Cancerous, stage 2 glioma, tumors.
He tells me all the time that there is no comfort in some answers. He thinks there's something peaceful in the unknown. Personally, I wholly disagree. There isn't much he can do at this point as far as treatment goes, but he knows what protocols to follow and what symptoms to keep an eye out for.
I'm not saying that I have the exact same diagnosis that he does - our symptoms thus far has been pretty different - but I do think it's better that he knows.
My doctors have some sort of a protocol that I follow - yearly scans, keep an eye out for new pain, if anything feels different let someone know.
But that leads to an entirely different set of issues: every single change in my body feels like a cause for concern. The average person gets a headache and they take some Advil, I get a headache and worry I have a new brain tumor. The average person feels tired and just thinks they didn't sleep enough the night before, I get tired and I wonder if I'll be able to walk that day or if I'm developing tumors on my adrenal gland. The average person gets a random pain in their hand and probably doesn't even think about it, I get a random pain in my hand and wonder if my tumors there are turning malignant.
Now, I know these stresses of mine are me often jumping directly to the worst case scenario. I mean, I've experienced all of that and nothing too bad has happened yet.
But, that's where the scariness of the unknown stems from. I don't feel as if I have the luxury of not hyper-fixating on every little change or pain or discomfort I experience.
At the end of the day, there are a lot of things about this whole situation for me that are scary. I wish I had some great wisdom to share with you all, but honestly, I don't. I just do my best not to think about it too much.
I distract myself, I do what I can to have good days, and on those good days I make it a point to do the things that are hard on other days. I try to pamper/coddle myself on my bad days, I'm learning to ask for help when I need it and for space when I want it, and at the end of it all, just try not to think about the parts that I don't quite understand yet.
And I know I'm not the only one that has this struggle. I know there are so many people out there fighting their own "unknown".
It can feel so lonely being in that spot, feeling so lost and directionless. Regardless of the area of your life that your "unknown" falls into, know that at the very least, there's one person feeling similar feelings, sitting in your corner, cheering you on.
We'll get through this together.
