Just over three months ago I wrote a post called Waking Up about how after months of living in a nightmare things were finally getting better. But then about two weeks later one of my doctors ended up stopping the treatment most responsible for that improvement to see what would happen without it. What happened is that it did not go well and I pretty much fell back into that nightmare.
It sucked. It sucks, actually. Because it still sucks. Because I’m still stuck in it. And we’re figuring it out but it takes time and work, and redoing work I already did. Which sucks.
I’m not ending this year the way I thought I would be, but it’s the end of the year nonetheless, which means it’s time for my end-of-the-year-thoughts blog post on this mostly-abanbdoned-throughout-2018 blog.
This year my end of year thoughts are a lot of what ifs.
What if my doctor hadn’t stopped my treatment? And what if it hadn’t taken three quarters of a year for that treatment to start in the first place? What if instead of assuming all my symptoms to be malnutrition for all those years doctors had believed me and recognized that something bigger was going on? How much nerve damage could have been prevented?
What if medicine knew nine years ago what it knows now? What if that doctor was right when she said that had I received the right treatment right away that I might be mostly healthy today? What if she’s right when she says it’s been too long and we might not be able to really help much?
And, shamefully, what if I lived somewhere else? What if I lived where I had access to the sub-specialists and the sub-sub-specialists and even the sub-sub-sub-specialists that just don’t even exist here, but that would know best how to help me?
It’s just been a hard year.
With unnecessary suffering. I’m pretty accepting of everything; I don’t think of myself as suffering every day. I’m coping. I’m managing. I’m doing my best. I’m living. And sometimes there is suffering and it’s just part of it all, but this year a lot of it was unnecessary, which is harder to accept.
That’s where I’m at on this last day of 2018. Some really positive end of the year thoughts, hey?
But I’m writing it all out so that I can let it all go.
Well, so that I can try, anyway. I’ve been carrying all that around in a bulky, awkwardly shaped, terribly heavy suitcase and I don’t need that kind of baggage in my life. So at the very least the process of writing it all out is akin to putting some wheels and a nice pull handle on that suitcase so it’s easier to cart around. It’s a start.
But really, there’s nothing I can do about any of those what ifs so what’s the point of being bitter about them? I can’t change the past. There’s nothing I can do about nine years ago. Or nine months. Or nine days. Or even yesterday. All I can do is try for a better tomorrow. Except not literally tomorrow because I’m pretty sick right now and that doesn’t change overnight. Probably not nine days from now either. Nine weeks…eh…but a better nine months from now? Very possible.
And as frustrated as I feel, as awkward as that suitcase of what ifs is, it’s not the only piece of luggage I’ve got with me. There are some other suitcases of blah. But then I have a backpack of gratitude, and I don’t mean the kind of backpack you use for school, I’m talking about one of those big backpacks you use to…to backpack around places. (A backpacking backpack? Evidently I’ve never backpacked anywhere.) I’ve also got a duffel bag full of things I’m looking forward to. As well as a backpack, but a regular one this time, of things I want to learn and try. A hat box containing my sense of humour (Why a hat box? Um, why not a hat box?) And three giant suitcases full of yarn. Obviously.
Metaphorical me is clearly very strong and coordinated, carrying around all that luggage, which is funny because real life me gets tired reaching for my phone and half the time ends up dropping it.
Just kidding. My imagination skills are not that strong so metaphorical me is kind of a disaster, too. But we, and by we I mean the real life and metaphorical versions of me, are lucky enough to have some pretty rad people in our lives. Metaphorically, they carry all my luggage around for me. And push me in my wheelchair through the airport. I’m not sure how we ended up in an airport but that’s where we are apparently. Maybe we’re going backpacking! Wow, metaphorical me is so adventurous.
As for real life me? Those pretty rad people help lighten the load of the bad stuff and make the good stuff more good. Whoops…better is actually the word I’m looking for. They make the good stuff better.
Okay so I didn’t really know where this post was going when I started it but I’m cool with where it’s ended up. But also that got kind of complicated so thanks for trudging through.
Anyway. My point is…I don’t even know anymore.
My point is that 2018 was not ideal. It really did not go very well for me. But I still have hope.
My point is that I’m still so hopeful. I don’t even know for or about what really, just that after all this time I still feel hopeful. Because after all this time I still choose to be hopeful.
I know that life doesn’t magically reset at the start of a new year, but I’m hopeful that in a year from now I’ll be writing about how 2019 was the year things finally changed for the better, remembering that better doesn’t always look the way we expect it to. And if not? Well then I’m hopeful I’ll be able to say the same thing again a year from now.
So yeah. I’m hopeful. Sick and tired and frustrated. And hopeful. Because all of the stuff in all of those various pieces of luggage, and all of the people helping me carry it, when I add and subtract it all up, what I’m left with is hope.
I hope that you have hope, too. If you do, I hope that you can share it with someone who might need it. And if you don’t, I hope that maybe when you do some suitcase math you’ll be able to find some hope of your own.
I hope to see you here again soon.
And. Of course.
Happy New Year!
Happy Hopeful New Year!