Stop and Reset

Step 2 ½: the longest mile

TRIGGER WARNING: Pix of stitches in my head, rampant negativity, abuse of all caps, SO MANY SWEARS

I have two days until they turn on my cerebral master blaster and we get this party started. For every WOOHOO moment I’ve had, I’ve had twenty WHHHATTTHHEEEFUUUCCK moments, WTF being a rhetorical question at best.

In the 35 days since they cracked into my skull, I’ve spent the night in the hospital (surprisingly ok!) and had a generator installed in my chest and the brain wires connected (surprisingly rough!). I had the stitches taken out of my head on Thursday after several weeks of feeling like evil elves were pulling on specific pieces of my hair. Those bits of hair were fused and scabbed over with the plastic stitches to the point that when Nurse Jacki (yes, that’s her name, I chose not to make Edie Falco jokes) pulled at the stitches in question, there was a good bit of resistance. Instead of yanking, Jacki made the executive decision to cut the hair in question, yelling “APOLOGIES, EMERGENCY HAIRCUT”, so I would quit yelping. So there were a few bald spots, but overall so much better to have all the birds nest material off my head. 

WHY SO SERIOUS

I appreciated the pain after it was over because I was flooded with endorphins that helped me make it through the rest of the day. I woke up a bit out of sorts and as the morning pressed on my weird vibes escalated into a bit of a panic attack. Hard to describe, at first I thought I drank too much coffee. I felt jittery and not in control of my body. I laid on my PEMF mat for a good thirty minutes or so, hoping it would bring me back down. (PEMF mat - Pulsed ElectroMagnetic Fields, a therapeutic mat that uses low frequency electromagnetic energy to replicate cell activity, thus stimulating cell growth and repair…that might all be bullshit and they cost a pretty penny but I’m a believer) By the time we set out for the appointment I was sweaty and lurching around in a daze. My roomie asked “Are you okay?”, to which I countered, “No, but we’re going anyway”. 

He has heard me say that enough that he doesn’t get swayed by it. He stayed calm throughout the commute to the hospital, by the time I got to the elevator I told him, “I’m not sure how things got this fucked up.”

Maybe for that day I wasn’t sure why I went from “a little off” to “I feel the urge to jump out of a window”. But in the big picture, I get it. I was on fumes going into this adventure, perhaps even mere suggestions of fumes or fumes I stole from the ether from watching too many TED talks. But definitely the EMPTY light was on and flashing, telling me to pull over and deal with it. 

STOP WITH THE GAS METAPHORS. WE GET THE POINT.

I often said before I started investigating the DBS procedure, “I love the people in my life, but I hate my life.” Hate is a strong word, but it was true for me. Everything I tried to do had gotten so hard. I went from being a fairly athletic person to a total smoosh. Everything a person does without much thought at all became a big deal. Pouring cereal in a bowl, eating it, putting the box away and putting the dishes in the dishwasher, big deal. Ironing a uniform, putting it on, packing a suitcase, major feat. That was before I even attempted to go anywhere. Anything physical was all about pain and exhaustion. Life just revolved around hauling my achy crippled meat suit around to the next required location and pretending to be normal, hoping my feet didn’t invert and strand me somewhere inconvenient, unsafe, or embarrassing. When the feet became continuously unreliable, I stopped going places out of fear. Thus the investigation into DBS. The vetting process to see if I was a candidate took almost a year. A year of solidly hating my life after nearly a decade of hating what the world was turning into was debilitating as fuck. When I would ask questions about new issues that arose and I would get answers like “Well, that’s probably from being in menopause”, I would internally shriek, “I HAVE TO WEATHER REGULAR PEOPLE PROBLEMS ON TOP OF ALL THE REST OF THIS SHIT???!?!” 

Yes. Yes, of course you do. 

So here I am, ready to move forward. If “ready” means having short term memory problems that make me mistrust my brain (every time I light a candle, I’m sure I’m going to burn the house down), sobbing inconsolably while matching my socks, pulling little matted dreadlocks out of my uncombable bedhead and pulling my back out while farting, I guess I’m as ready as I’ll ever be. All of my research into DBS has yielded a few discouraging results; I was aware that I cannot submerge my head for a while longer, probably until the end of July. So no baths or swimming. But also possibly no hot tubs, infrared saunas, no PEMF mat. I’ll have to discuss it with the Abbott rep on Wednesday but it seems that prolonged exposure to temperatures above 100 degrees and anything magnetic can disrupt the generator. Makes sense, it’s an electronic device. I can no longer have anyone massage my neck because of the implanted wiring. I will adapt of course, but I’m mourning the potential loss of some of my most loved therapies for keeping it together.

All these comforting routines being potentially taken away plus the grind of thirty-five days of appointments, surgeries, being physically limited enough that I can't make my own bed or do the laundry, mentally limited enough that reading and responding to texts are sometimes all I can accomplish in a day. I take walks but sweltering temps have me unable to go too far off the leash without a responsible adult being able to come get me. I generally have about two hours a day of energy and clarity after I’ve slept. I'm functionally optimal between 4 am and 6 am. Not a terribly sociable time slot, but at least it’s quiet.

All of the above bullshit caused me to seek out my Parkinson’s disease North Star, Michael J Fox. MJF is probably the most famous person with PD, his foundation has raised incredible amounts of money and awareness. When his documentary “Still” came out in 2023, I couldn’t wait to see it. I watched it the day it was released, I watched it with the roomies, I watched it with another friend. I was surprised at the time how many people told me they didn’t think they could watch it as it seemed “too sad”. Ok, so you can’t risk seeing a life through someone else's eyes for an hour and a half because you might get bummed out, TRY LIVING IT EVERY DAY, ASSHOLE. I was in a PD dance class at the time, even they said they couldn’t watch it. It’s like if they opted out of seeing it, it couldn’t become real. Intriguing strategy, let me know how that works out.

The film is not depressing to me whatsoever. My fourth viewing was as restorative as ever. MJF has such a sly sense of humor and he is surrounded by so much love. While working out with his personal trainer, he gets frustrated over and over with his inability to do the movements without losing his balance or his cool. The trainer tells him repeatedly, “Stop and reset”. 

Stop and reset. Must get that tattooed on forehead. STOP AND RESET. 

There is so much in his story I can relate to. Not the catapult to TV and movie stardom, but the hiding. He continues to work, disguising his tremor by always having something in his left hand. For years I have been ultra conscious of how my body betrays my secret, first to those who look carefully, then to anyone paying attention. I understand having pills available in every pocket, fighting to get through your obligations before you run out of pills and energy and ability to keep it together. He drank heavily for a number of years, I have washed down regret and denial with an ocean of liquor. There’s a lot of “the only way out is through”, if the terrain of going through doesn’t destroy you first.

Early in the film the director tells him “Everyone talks now about owning their narrative. So the sad sack story is “Michael J Fox gets this debilitating disease, and it crushes him”.”

MJF tells him, “Yeah, that’s boring”. 

Fuck boring. Fuck pretending to be normal. Fuck the news. Fuck these heartless jerks who can never get enough money. Fuck these attention seeking old white lady hold outs caving to pressure to do the wrong thing. Fuck worrying about the market crashing. Fuck this waiting game. Fuck these cruel cowards. Fuck worrying about what anyone else thinks. Fuck being passive aggressive. Fuck telling yourself that worrying about something equates to doing something. Fuck empty apologies. Fuck being critical when you’re not willing to participate. Fuck toxic positivity. Fuck people who are mean to others because they can be. Fuck that I still have a day until I have to be somewhere with zero medications which will make me acutely aware of how crippled I am for that day. Fuck it all. Fuck the Man, even if I’m not sure who the Man is anymore.

Please add your Fuck list on the pile in the comments. If we’re going there, let’s just fucking go there.

Then, we stop and reset.

Next dispatch will be after I get powered up. Managing the fine line between hope and expectation. See you on the other side, thugs of love.

This post made possible by Nan Tepper who always asks “Are you writing?” and I feel uncomfortable when I say no. I’ve been working on this since Friday, today I slid my palm across the trackpad and wiped out about 1,000 words of it. Fuck my life. But I rewrote it, despite being far beyond my two hour window of clarity. Stop and reset. Repeat as necessary.