The neurosurgeon was somewhat reassuring. He said he’s willing but not eager to operate on me: I meet the criteria for surgery in that my discs are dead and dessicated and bulging into my spine (they would go in through the front of my neck and do discectomies at C5-6 & 6-7, a laminectomy to address the bone spurs, cadaver bone grafts between my crumbling vertebrae, fusion of C5-7 with a plate and screws), but the degree of stenosis is not yet endangering function (the measurements on the report are godawful, but on film you can still sort of see where the nerve roots go through). Basically they’ll operate if/when I am desperate enough from the pain and numbness/weakness to go for it (NOPE), but despite having a 70-year-old spine I’m young enough that the 1-2% yearly cumulative risk of re-op over time would eventually bite me in the ass, and they would therefore prefer to wait unless I can’t live with the pain (plus once I have hardware I’d probably be limited to CTs, which carry a highish burden of radiation, and with all the ones I’ve had already plus countless x-rays and floroscopy-assisted procedures...my cancer will have cancer at some point). So I am hearing GOOD news: as long as this doesn’t get worse I can avoid surgery for as long as I remain as stubborn as I am, and I’ve maintained an unrelenting thirty-nine-year streak, so I’m feeling like ain’t nobody slitting my damn throat now or hopefully ever (I know, I know, it’s controlled, surgical throat-slitting with a low risk of death, and that is fine and miraculous if we are talking about someone else’s throat)!
The REALLY good news is he doesn’t think I have ankylwhatchamacallit, just regular old degenerative spinal arthritis exascerbated by the beating in 2/17? This means a better prognosis with surgery, and that staying active is my best shot at preserving function even if it hurts like hell (until the surgeon weighed in no one could say whether exercise was good and necessary or liable to paralyze me for life).
Buddy, for all I know your father and older brothers have you convinced that I am the bad one, and in the long run you may even come to believe it, but I can’t even be mad at you because for twelve years you kept me from regretting a huge chunk of my life. Heck, you still do when I think of what a sweet baby you were, what a smart kid you’ve turned into, and how your iron will might just allow you to emerge from the crucible of your childhood stronger than steel. If your father and brothers’ cruelty was the price I had to pay to get to meet you, I’ll always wish it could have been different but I’ll never regret having you.
I miss you, Bubs. I’ll love you forever, and then a little bit more, and I’ll always help you any way I can.
As a friend who knows from such things pointed out to me today (I already kinda knew but hadn’t done the paperwork for a grown person with a work history before), you can’t apply for Disability (nor would anyone who’s ever tried to help a loved one live on and communicate with Social Security WANT to, OMG) until you are actually disabled. Which on the surface would seem really obvious, unless you’re in my shoes: I know it’s coming. I know what it will probably look like and that it will be soon (sooner than I thought even a week ago, DAMN it), but...not yet.
So tomorrow I start training for a new job making less money than I have in ages but that is also much less demanding (my reduced household, once fully divested of expenses relating to the children I no longer have, can run on less so I’m aiming for something I can do on autopilot if I’m really sad or stoned on painkillers). Instead of serving I will be cooking, doing quiet prep-work in the background of a brand-new shiny little franchise catering to people with food sensitivities (and sensibilities). It’ll require me to be humble, my new boss pointed out. I said life has really humbled me the past year so that is okay, I am used to it, bring it on. It seems like a great concept, great people, great energy...if I had feelings left I would be really excited for this good opportunity.
But also Monday I have to start getting my shit together to apply for SSD, as it seems that at minimum I need at least one surgery that under the best of circumstances leaves you with a long recovery and permanently diminished mobility. How soon remains to be seen. Like, my MRI looks terrible but maybe it’s been like that in there for a while and if I can function at all then no way am I down with anyone slitting my throat and chipping away at the bone around my GOTDAMN spine, abnormal or not. Until it’s a matter of preserving function NO THANK YOU. There have been signs I’m approaching that point, which is what led to all this doctoring: we’re trying to pump the brakes.
This past Tuesday I had a minimally-invasive spinal intervention performed under floroscopic guidance that went poorly due to how fucked up and calcified my ligaments are. It was nobody’s fault, and the procedure may still prove marginally helpful in the longer run, but currently my arms don’t work so well. I have full range of motion in both but not full sensation, my fine motor skills suck, and my left arm is just...like okay remember Bob Dole? And the pen? (Not knocking the guy, that little trick got me through several job interviews)
Until we know if this is temporary and related to swelling or the beginning of the end, I have to try to plan two futures at once. I know which one I would prefer (I started to say “want” but if we were talking about what I wanted my spine and family would both be intact), but not which one I’ll get.
I was supposed to wrangle physical copies of my most recent MRIs into the hands of the local teaching hospital’s Neurosurgery Dept for second opinion purposes (actually third—my Pain Management doc ordered the films and was like “OMG THIS IS NOT PAIN YOU MANAGE UR SPINE IS IMPLODING AND GROWING FANGS AND BITING ITSELF, LIKE. YOU SEE WHERE THE RADIOLOGIST SAID MASS EFFECT? GET YOU SOME SURGERY!”—obviously I’m paraphrasing but that’s pretty much the physics of the situation as I understand them—and the neurosurgeon he shares office space with will have had a look by then but surgery on my spine is like an ancient Jewish funeral—I need a full minyan if only to comfort the chief mourner), return an unneeded musical instrument, go to a job interview, and drive today.
Instead I drove for two hours and couldn’t stop crying over how mad I am at life and how much everything freaking hurts right now. I went home and worked the problem and decided that if a child of mine was acting this way I’d take their temperature and see if Tylenol would make them human again. And I did in fact have a highish fever but the most recently-needled part of my spine isn’t red or hot or anything so I think I’m just regular-sick, which is actually GOOD news, so I blew it all off because who even cares.
I guess at some point I have to tell you that we never did end up in custody court but my two boys now live with their father. He wanted it, they wanted it, I think it will lead to heartbreak all around, but thanks to the magnetizing spark of a narcissist and a well-played long game of methodically incentivized dehumanization of me and alienation of the children from me, it became the only option once my health failed. My ex is so damn impossible to deal with as a coparent even healthy, ablebodied, and not surrounded by angry, confused teens that it is impractical to even attempt visitation (if anyone even wanted that right now—neither of them want go see me because they’re so eager to please their dad and both mad at me for not letting them go sooner and also mad at me for letting then go, and I can’t keep letting myself get as upset as they make me for entirely different reasons right now). In a way I think a clean break is better. I...still can’t quite sell myself on this, it’s all horse shit, but sometimes bad guys win.
Boys, if you’re out there now or ever reading this blog, which may be as much of an intellectual legacy as I manage to leave, the single most important piece of life-advice I would give you if you would listen is never to marry someone before you’ve seen how they behave when they are angry.
I would really like to wake up from this fucked-up fever dream now, please.
* The XY isn’t the biggest POS ever born with his last name after all.
* If you have a headache from repeated blows to the head, an icepack to the back of the neck is surprisingly effective pain relief.
* Not every job is better than no job at all.
* The Drag community can talk you through fixing anything with makeup, and red counteracts the blue of fresh bruises if you need to go to an interview with a jacked-up face.
* Already having a chronic illness doesn’t mean you can’t acquire another.
* TSA doesn’t keep us as safe as we like to think, but NOTHING escapes the deputies who search you on the way into court.
* Not all Scouts have honor.
* We finally found out why Hotter has all of the GI problems NOT caused by neuropathy: he has Celiac Disease (sucks to your Celiac’s, Hotter).
* iPhones are like diamonds, and pawn for like a tenth of the purchase price.
* Clenching your teeth affects your reflexes in your arms, if you have any (reflexes, that is—it turns out you can lose them).
* Just because you give somebody life and then save their life repeatedly doesn’t mean they won’t cut you out of that life for being sick and poor and go live with the person who didn’t want them to be born in the first place.
* Avocado oil makes the very best latkes.
* Antisemitism is still very much a thing in America (oh, America).
* Things can get so bad that you turn away from the people you love. That is when you need to be reaching out.
* It’s true, weasels really will kill every single chicken.
* I have a degenerative autoimmune disease that I’ve been ignoring for ten years out of denial and fear of my ex-husband taking the kids. It had been in remission since my divorce was finalized, but stress and physical trauma are triggers and last year’s beatdown was enough to wake it up.
* I’ve missed y’all, but one of the few benefits of having nothing left to lose is that I can say what I want now, so I’m back.