Wow. It's Been 1 Whole Year

(And those numbers only align if you’re lucky enough to already have a spine institute working on your behalf)

Welcome to a new week Word Nerds!

Here is the usual schpeal I say at the beginning of each week. But fret not. Skip ahead to the new words down below (beneath the line), if you’ve read this Monday Hello before.

My Substack is where I am able to express myself creatively, share on all sorts of topics (not exclusively sickness) and it helps me to archive this “ongoing legacy” that I HOPE is the continual memoir project I’ve started.

Here, anyone who needs or wants a scholarship gets one… because kind friends help support the writing there, even if it’s just $5.

xo

B

I am so, so, so sorry.

I don’t flatter myself enough to assume that you would [need to] notice I didn’t live up to my “almost Writing [almost) Everyday Promise” and didn’t write the past week, but…

Well, I’m still sorry anyways because a promise is a promise. (Whether anyone needed to notice or not.)

I am so, so, so sorry.

So, what’s the reason? What’s the big problem? In the most boring terms possible: something is wrong with my cervical spine.

“Big time wrong”… I just don’t know what yet.

The way that spine medicine works is the following, in terms of the maths:

Spine problem arises and the well-versed spine patient knows when it’s irreversibly serious and normally knows when it’s not.

Unfortunately, we also know that no one is allowed to care via insurance, until we have waited 6 weeks.

So, if you’re like me and you’ve done this rodeo over and over and over again for the last half a dozen years (longer, if you count when my lumbar spine issues first arose after falling as a teenager), you don’t even bother to complain until you’re about halfway to that bench mark.

If we do our maths and sciences right, then we know that by the time we do raise such concerns, and attempt to make an appointment with our neurologist, and get that initial appointment just to tell them that you’re going to need an appointment to make appointments: It’ll be rounding close to 2 months by the time all is said and… well, said. (Not done. Never done.)

And those numbers only align if you’re lucky enough to already have a neurologist or spine institute or researchers working on your behalf.

In my past, prior to having any or all of the above, it often would take about 6 months before I could see someone proper… which is properly horrifying to imagine half-a-year of senseless-suffering just to accomplish… well, again, almost nothing. Lots of saids, little done.

(Or, rather and much more appropriately, if you’re unlucky to have an established neurologist.)

I saw one of the spine doctors in person at my spine center to let them know I was almost 1 month into the increasingly out of control new pain, and that I was currently “overcoming it” by pushing through the suffering to drive to work and hide it from my dancers and colleagues… but, the time bomb was ticking.

At that point, I had no idea how I was still fake-functioning, but if you saw me in the moments between driving or dancing (full muscle spasms, frozen like a board, unable to turn my head at home), you’d recognize that the painful balance of choosing when and how to balance pain is deeply individual, and rarely ever easy to effectively put into written word.

I knew I had a contract that was ticking down and soon I’d be commuting slightly less (for now), but then: New jobs began to accumulate for the future moving forward, and I was sick of how sick my new cervical herniating-pain-feeling was making me.

I was cancelling most of my doctor appointments and CT-scans because I couldn’t handle the pain of sitting in a car for medical, and sitting in a car for fiscal, all in the same day. And then on weekends, I was left to just deal and not-wheel: Stealing moments to push through as a mom, and to make her time at home as fun as possible, but hide from anything and everything else.

My point?

Spine science typically involves an equation of waiting for a couple of months before anyone can listen to your complaint and know if it’s going to fix itself or need more intervention… Then, going through each and every benchmark of intervention even if it’s never worked for you in the past (for example, steroid shots)… And then, when or if that doesn’t work, waiting even longer to decide what to do next.

Every test takes time to schedule (thrice as much if it hurts too much to take time to endure one).

Every test result takes time for a doctor to read it, for you to get another appointment to travel and go and talk about it, and then maybe even more time for more tests and more waiting after that.

And, if you’re like me and you’ve already maxed out most of the medications that you can take and surgeries that you’re personally willing to undergo, it feels even more nonsensical. (That being said, this was the worst time for me to run out of one of my most important meds, and since there is no short-cut to getting to prescribed amid a busy Stage Week ahead of me, it won’t swing in to save the day any time soon either).

I swear I have more to say here than just complaints and drama.

I have new things written, which I’ll post this week until I know your kind response to the question asked in the video.

I have updates on the new life changes… hopefully a positive wrap up on this show coming up this weekend… and even ‘other trying health hurdles’ that I didn’t take the time to write out here (because yes, my GI system was freaking out at the same time as this spine sh*t-show, so I truly was getting pain from every side and trying my best to keep Substacking and going).

I don’t want you to feel depressed reading this diary, nor do I want to martyr too too much.

I don’t want you to feel like you will only read sad things here (so, I’m sorry if this is sad and whiny, for sure), but I CAN say that there are goods to balance out the tough ahead, and there are takeaways to be taken too. I just… can’t find them today.

Today, I can ask you for your opinion too and see what you think and feel.

About writer’s schedules… About whom you enjoy and support and follow here (I’d love to know and go read their stuff myself!)… About how you view this give and take of freelance, and even this “balance” of pain and possibility that we call life.

I’m sorry if this was a sorrow-filled grumble but…

I swear they’ll be something with some perspective down the path soon? And:

I’m thankful for you in every way.