I’m Going to Confess Something I Shouldn’t…

(I don’t know what else to call it)

This is long…

Unfiltered and uncut…

As a thank to you YOU, my Substack friends who tolerate the mishmash between shortened sentences on Instagram, and longer lines here.

Thank you, thank you, thank you.

I would LOVE your suggestions if you ever experience similar things, or even just comfort suggestions that you believe help psychologically.

xo

I’m going to confess something I shouldn’t…

So please put on your empathy goggles before you read this?

I can’t believe I’m writing this down, to be honest. But I am always honest when I write. Even so, the interweb is full of douche nozzles who grip onto sentences without nuance or subtext, and twist and twist and twist.

Still: honesty.

I am having an “attack”.

I don’t know what else to call it.

The last time I had an “attack” this badly, I was dancing in a professional modern company in DC and remember crying secretly on the long commute to and from, wondering if this would be a forever problem. I was so panicked that I’d feel this way without a salve … and in a way, that’s sort of been true? There has been no salve (yet). But in another way: I had no idea that this profound and debilitating hand and wrist pain would be something that comes and goes like the tide.

I don’t know about you, but if a pain comes and goes, I cannot find the energy to give a sh*t about it. The second it’s gone, I rush to get as much life squished into the gaps before the metaphoric garage door squishes me again.

Then, when the pain is enough to completely freeze my autonomy and ability for awhile, I start to freak out wanting answers… but it normally dissipates a few weeks later and I don’t want to waste any precious time dealing with healthcare while the suffering is less.

Does that make any sense?

(Someone make it make sense.)

I don’t like to share about problems that don’t have an answer yet. It makes me feel like a buoy in an imperfect storm. But I like to share the truth and the truth of most of our lives is: if we wait to have all the answers before being honest about things we can’t control and can’t yet explain… we will be silent until the water overtakes us.

So here’s the fumbled reality: I can’t yet explain why I have these horrific nerve-pain flares and numb-pins-and-needles, but when it hits my paws, I become completely cut off from the world.

As a Deaf person, my hands ARE my life.

And there are many Deaf people who have hand immobility or uniqueness of course, but… I am struggling to develop those efficient coping mechanisms in the moments that I need them. And that’s the frankness of it. No matter how much I “should” do “XYZ”, something about this raw and reverberating pain piling on top of the existing new pains - my spine being the one I can’t currently escape (worse than on and off organ BS) - shuts down my psyche.

I feel shut down.

Writing about something with no clear origin yet (that I’ve had the time or tolerance to explore), while still knowing that whenever something is wrong, my doctors tend to uncover what it is eventually … feels vulnerable. Writing about something that is an on and off complaint, and thus I’ll want to forget and delete as soon as it dissipates, feels vulnerable. Writing about anything I don’t have a plan for feels… whiny. Silly. Trivial. But it’s really really not.

If you felt this, you’d think I’m being tough as nails. Trust me.

But I’m also not. I’m exhausted and depleted and cold (our heat is broken) and wish I could stumble into an easier path somehow.

And I know this will read as negative and depressing. We like inspiring people who spout steel tread linings, but… I also like honest people. And honestly?… I haven’t said the vulnerable part yet.

The real truth is tomorrow.

▪️▪️▪️▪️

I need your suggestions!

(Please)

But first: I am having a hard time writing.

Not mentally (I can pump out novels in days) but in a literal, physical sense.

The last week has included dictating all work emails and curriculums to my partner, who has to take the time to write it all out - my brain to his fingertips - and that’s not very fair. But it is what I’ve had to do to survive. And I hate it.

Writing is my freedom. It’s my heart. But I’ve been having hand “attacks” and I’m starting to call them attacks recently on purpose.

The word “attack” implies that there is a light at the end of the tunnel.

Attack means that we subconsciously remind ourselves that there IS an end at some point to the pain.

So even though I don’t have the medical “why” yet, and this has been going on and off for years but I can’t muster the patience to pursue it as readily as all the other shadows, it’s worth trying to remind myself that suffering is life, but suffering isn’t always as bad as it feels on its worst day.

If you have any takeaway from this whiny, spur of report, it’d be to consider using the verbiage “attack” as often as you can to keep some level of hope alive.

But having said that…

I am TERRIFIED of talking about pain meds online.

There is nothing that creates more vitriol (Not totally true. I’m being dramatic), and I don’t need to invite that into a life that already has a lot of cr*p-cannolis as is. Even so, it’s perhaps no surprise that I have a neurology team who manages nerve pain as needed, and that that requires medications. So here’s the problem that’s happened over the last few days of silence [silence because it hurts too much to type. Rather, I needed to safe my pain-cost-balance for things more prescient to time with my kiddo in the nest, or other must-do’s along the way]:

I have been avoiding running out of critical medications for the last few years, knowing it had the power to derail all power-through functioning that I force daily.

I am so careful to make sure my meds are orderly and ordered, and still… over the last week, we faced an accidental prescription snafu with no fallback option. So the thing I’d been fearing could happen for years, happened.

And it’s not the suffering and how it interrupts life that is grating and mortifying to suffer through. No, it’s the fact that I am violently reminded that I am not a person with her own agency like I trick myself into believing. If there was a zombie apocalypse, I’d be one of the first to die.

So I’ve got the cervical spine pain (that could be a shoulder for all I know. A lot of questions to answer) and the flares of gnawing, aching, swollen feeling hand, wrist pain.

And so… I’d love your suggestions.

Does anything come to mind, Dr Quinn Medicine people? Anything that helps you? Anything that sounds like you or someone you love?

I’ll report back.

First, I am crossing my miserable fingers and hoping this passes fast.

xo

PS: Kindly consider booming a supportive Word Nerd if you’re able (every little bit counts and helps keep this ongoing memoir going, or… Share with you someone you like?