Albumin, blood sugar, creatinine,
dialysis, endocrinology, frustration,
gallbladder (gone), hysterectomy?
I just know life must not overwhelm;
perhaps, quietly, restfully, serenely,
trust until victory will xeroticly jacht zen.
Or not.
I mean, really, when you add in the rest (and the lack of rest), the equation of balance becomes more and more overtly ludicrous; personally, I think the banal humor rests in that the names of things so completely obscure their meaning anymore… functional illiteracy meeting functional myopia meeting functional plausibility and having themselves a good laugh around the circumstances and events colliding in and around me.
Palindromic Rheumatism sounds romantic; a knight in shining armor! But no, instead, Quixotic autoimmunity, tilting windmills of physicality with astonishing aggressiveness. Since I’m clearly never going to work again, lemme give you an eloquent, quick look at what this means (and then, remind you that this can happen anywhere, anytime, and I’ve been living with this and all the rest since, well, ever.):
Next, we add another serving of nebulousness called fibromyalgia.
I remember when I thought that wasn’t real. Now I cannot imagine how I was ever that fortunate. Sadly, you can’t get proof in a picture (yet?), so I endure all manner of crap from people who are as I once was in relation to believing “this was a thing”… you know, karma.
This means that my every day is rated throughout the day using a pain scale that ranges from 1 – 10. My average is between 5 and 7, with spikes upwards depending on weather, stress, blood sugar, you name it!
Between those two, there’s this nifty little cycle called “co-morbidity”, which is a fancy way of saying these two don’t play well together. But that’s ok, because there’s more!
The same genetics that seem to have made me intelligent decided that it should be wrapped in high-functioning autism (official diagnosis pending), anxiety disorder, and juuuust enough intellect to realize the full breadth and depth of life I cannot, myself, attain.
This really shouldn’t be a surprise to me. But, somehow, it always is. I’ve also realized that I could have been quite happy in life had I never experienced a moment without pain.
Once I knew there was a normal that was legitimately pain-free? Well, let’s just say I’ve never felt truly free since. I didn’t realize how much pain I lived in until I began to have relief. Now I’m angry because I can’t get rid of the pain permanently.
Trying to reduce the stress that causes the inflammation that sets off the co-morbidity that destroys the house I call home! Maybe enough that I can work again? Maybe?
I didn’t realize how much stress I lived with until I began to have relief. Now I’m angry that I constantly have to duck stress because I can’t ask others to help me manage me (or, I have and did and it just didn’t go well. ever. with anyone excepting as listed below).
I didn’t realize how much it all affected me until I began, finally, to put up genuinely healthy boundaries. The irony here is that it’s not “new stress”, all this toxic fallout rising from putting boundaries in place, it’s just “different stress”, as the world entire, in so many ways, makes it so very clear that it’s just not acceptable that I am not operating at the same preternatural performance, productivity, and passion levels I once served as brand Me© .
I know how the world treats people who “cannot”. I’m terrified of it. Even as I realize there is a difference – however horrible this is to me, it is not horrible of me. It’s just my reality. It’s become very clear that I’m the only one who has to deal with it. Every instance otherwise is a gift.
I don’t think humans often consider how many gifts they get “for free” just by living. I know I didn’t. Then again, it’s probably just me.
The arrogance of Icarus, reflected in me. It was a hell of a flight, but also a hell of a fall. Not sure I’ll ever really catch my breath again.
We are currently losing our home. We’re having to accept giving our mortgage holder “deed in lieu” of foreclosure because (contrary to what we were promised), a boundary issue with the property was never corrected, and we cannot afford to pay for our neighbor’s attorney, an attorney, a boundary professional, et al (because there IS more) to correct it so it may be sold.
Our unsecured creditors are all charged off, a beautiful 730+ credit score has been left bleeding in an alley called “under 400” as a result. In under a year. That may actually be a record, but I not interested enough to look it up.
We’re on a payment plan to the IRS for unexpected tax hit (consulting gig “magically” turned out to be 1099 when tax time came).
There’s more, enough more that you’d think I was writing a story. Regardless, you can, I hope, sense the theme. Things are…. hard.
And, if you’re maintaining context, you know that the only thing I require at present to reclaim a reasonable level of quality of life is A REDUCTION OF STRESS.
That doesn’t seem to be something that’s going to happen, so I suppose what this post really is begins to finally materialize from behind all these words….. but I cannot yet bring myself to call the words forth to describe the things swirling up from the back of my head.
Instead, I work on admitting to reality… which is unexpectedly and profoundly harder than it should be.
I am ill. I have been for a very long time.
I am not going to get better. In fact, I’m going to have to WORK at not getting worse.
And I’ll eventually fail at that, too. Terminally. As do we all.
I might have forestalled the intensity of this unfortunate path had I understood the inevitable outcome of this combination of factors in my health.
I only mention in passing the contributions of culture, society, et al on things, because “what if” never helped anyone after the fact, so I’ll leave it there but to say that I was ignorant. I learned too late. It is sad. I am sad. And tired. I’m so god damned tired.
Still, though, I am thankful for what remains. I am so thankful for J, C, and D that I can barely breathe for the weight of gratitude… this, the instinctive response/reaction to imagining NOT having them for even a second.
I understand “the struggle” more than I ever wanted to… but I suspect we all feel similarly. From this perspective, all our conflict over ranking and blame just seem so wasteful to me. I suppose you could say I see my situation seemingly being played out on the macro level. Empathy or arrogance? Both, I’m sure.
I know this: It’s hard to feel that you are diminished. It’s hard to feel that you’re going to have to depend on others. It’s harder to realize your list of others is frighteningly short.
It’s hardest to realize you probably too late to significantly change it (barring some incredible medical discovery becoming available), but it’s saved by the realization that “probably” may as well be “probably” because, well, no matter how much your mind “thinks”, you don’t progress unless you “do” and my ability and capacity to “do” is constrained more than the world (but for three) will support.
I feel powerless. Useless. Unwanted. Unable. I don’t know anyone who enjoys feeling this way… I hate it and feel anger and hatred at myself for not being stronger. There’s just no upside to it.
Because of my situation and needs, we’ve lost everything. Now, we have to find an affordable place to live. I’m not sure how we will, given that credit score is everything if you don’t have cash and we haven’t had enough income to have either for some while, now.
I wish I could be one of those people who start “go fund me” campaigns, but I’m actually proud of myself for just writing this. (The only reason I can is because I know it’s coming down tomorrow and let’s face it, who the fuck gives a damn beyond those who already know all this anyway?)
I hate feeling this way. But I haven’t figured out how to change it… yet.
Life: It’s a process. (or something like that).
I’m still trying. This too, shall pass. Things get better, eventually, right?
Obhaiku (monade/classic style):
rain
like tears fall
alone