WEEKLY WTF
04-07-25 Edition
Leviathans, Laxatives & Maisie Mae
For a minute there, I thought perhaps I had writer’s block. But I’ve decided that writers block is only a thing if one feels some kind of need or responsibility or necessity that one “should” be about the business of writing some shit.
Speaking of shit, in order to take a proper shit, one must first feel the contraction of the bowels and the tingly stimulation of the lower nether-nerves, that feeling, you know the one, that is a harbinger of something fermented and unpleasant that needs to be expelled.
Trying to write without the proper impetus is like trying to take a shit without the preliminary biological contractions. You push and you push and all you get for your effort it is a broken blood vessel in your eyeball and a hemorrhoid to remind you about the nature of futility.
And by impetus I definitely do not mean to imply that pressure, responsibility or necessity are a proper or adequate motivator, at least not in my mind. Forcing oneself to write produces a fish that flops only in the shallowest of mind shoals- its mouth agape, opening and closing desperately trying to find and swallow a wet breath.
The proper impetus dwells down in the deep. You don’t see it at first, but you feel it’s current. You see ripples upon the surface of your mind where thoughts begin to bubble and well up from the swish of a tale or the whoosh of a fin. There is a leviathan down there and no amount of coaxing or pleading will convince it to surface. There is no type of bait that it will bite. You almost have to give up on the possibility of it surfacing and as soon as you do, I mean actually do- not just turn your head whilst straining your eager eye hoping to see it breach, I mean as soon as you realize that trying to write is the antithesis of writing- you finally let it go… so that it can surface, so that writing- can just happen, entirely of its own accord.
Writing is an activity best served after a proverbial dinner and desert. It’s like that cup of coffee after a meal that gets your mind moving and bowels rumbling. Enjoy your meal, then ponder. Live some life, enjoy, suffer, whatever comes experience it fully- then write it down. Writing should be a result, an aftershock. In other words- if you spend all your fucking time thinking about writing then all you have to write about is how you’re always thinking about writing.
But if you abandon the effort and turn entirely towards life and you dive into it with vigor for the sole purpose of swimming about, that’s when eventually you’ll feel something massive brush against your legs. It should be scary like that, like: wtf is down there? Do you dare put your head underwater to see? Do you dare attempt to convey its shape and color, texture and terror and present it to the world’s scrutiny using mere words? Do you dare let go and let the strange current take and then swallow you whole down into the briny blue depths?
When you feel the tickle or the terror, that’s the time to write. That thing you’ve been calling “writers block” or a “lack of inspiration” or “I’m just not the creative type”, that’s just you staying in the comfortable boat of conditioning. That’s just you dog paddling so hard out of fear that you think you may just take flight to avoid a slimy tentacle from reaching up from the depths to even so much as touch your little toe. That’s just you holding your damn breath. Exhale, let it go, empty your head and sink into the strange wakeful sea that is the mother of all thought. If you want to write you have to let yourself drown in experience first. At least a little.
Or so it is for me but I don’t really label myself as a writer. I’m just a dude who writes on occasion, a guy who gets itchy and uses any number of creative sticks to scratch. Perhaps some people can shit on demand, but I have to wait for the anticipatory rumble often coaxed by a cup of coffee laced with a creative urge. I mean, I’ve farted out a few poems lately and even a couple videos but it’s a far cry from when I was cranking shit out 6 or 7 days a week. It was just too much fun not too at the time. Having fun- now that, is another appropriate impetus for both writing and living. It’s much less diluted than the impetus for making money. I don’t make money at this stuff like other folks do. Asking people for money, doing ads, any of that shit would give me mental constipation instantly. There’s only so much “don’t give a fuck” fiber that one can consume.
It’s getting harder though to not at least think about that, what with my current situation and all. Our insurance company, United Healthcare, just sent us a bill for $900,000 to recompense themselves for my daughter’s ICU expenses. Can you believe that shit? Why even have insurance, it’s such a fucking racket. I’m not letting myself stress about it though, I have even bigger fish to fry and you can’t draw blood from a stone after all. Bigger fish than almost a million bucks charged to a family that lives paycheck to paycheck. My Dad just went into hospice but I’m not ready to talk about that here. Those fish are rising to the surface, one by one and I can smell them.
There are other things at play in my semi- sabbatical. One of which is that so many of you fine and concerned folk are asking how my 18-year-old Daughter Maisie is doing after breaking her neck at the end of August leaving her a quadriplegic. The truth of it is, is, that I still don’t know what to say. Friends, family, co-workers ask me from time to time as well and every single fucking time I am at a loss about how to respond.
You see, there is no canned answer I can easily regurgitate because the situation is so fluid, so dynamic and so fucking heartbreaking. Sometimes she is ok, sometimes she is absolutely devastated. When the body becomes damaged, so too do the emotions have a reciprocal response. She’s 18 years old for fucks sake, 18-year-olds are still learning how to take the hormonal horse reigns as they drag their helpless stagecoach hither and thither through treacherous mountain passes at breakneck speeds… literally in this case. She is an unpredictable ocean with a fierce tide and we are on a tiny little dingy of a boat being tossed about trying to calm down an ocean. It cannot be done, you just have to white knuckle it, hold on and paddle for your life.
The very idea that folks want an update has caused me to slip into that unproductive state of trying to think of something to say and something to write. People from near and far have fallen in love with our girl, Maisie Mae, at least a little bit and I feel obliged to honor that. But as I hinted above, there’s no point in sitting on the toilet unless the little brown leviathan is ready to poke its nasty turtle head into this vast and strange reality. So here I am, finally on the proverbial pot birthing my aquatic musings which I shall immediately flush into interweb oblivion.
It hits me the hardest while I’m showering. For some reason water beating down on me causes a kind of introspection and I realize I’ve been constructing narratives in the background of my mind. Negative ions perhaps? Perhaps the water pounding the surface of my skin lulls and coaxes the emotional sea life swimming in my gut to rise like an ebb of narratives, a swirling eddy of stories into the shallows of my conscious mind. Some will beach themselves and begin to rot if I am not mindful.
It’s nothing new for me, this tendency to take every experience and weave it into a presentable narrative. It’s been happening for a very long time. Long before I started doing internet shit. Even before smartphones existed. I absent mindedly wove inner stories that I would never tell to anyone. It was just the manner in which I thought. My minds attempt at making sense of the unsensible. It took me a while to see it but as soon as I realized that I was doing this, I worked very hard, and still do, to make it stop. I sometimes wonder if we all do this to some degree, do you find it to be so I’m curious? I regard mine as a bit excessive.
Perhaps that is how I am able to write. I am not particularly well educated. I attended a violent high school, in a violent central San Joaquin town. Escaped by turning 18 in boot camp and spent 5 years in the Coast Guard. Then dropped out and lived under a piece of old canvas for 2 years next to the Sebastopol Laguna in N. California with no power or plumbing. I did read frequently back then so there’s that. But that incessant and annoying tendency to narrate my own fucking life, it’s exhausting. Guess there was a purpose for it all along because, well, here we are- as unlikely as that is.
Funny thing about the mind- the more you try to get it to shut the fuck up, the louder it gets. I began practicing a kind of wakeful meditation- as soon as I noticed the narration tendency. I’d let it just sort of fade into nothing, I’d let the waters of sensation rinse it from my wrinkly pink meat computer. I’d wash those thoughts right outta my hair- let them circle and be swallowed by the metal mouth in the floors tiles face, or dissolve back into the ocean of consciousness like a wave breaking on the frontal lobe shore and retreating back into the depths whenever I noticed I was doing it. No matter how interesting I thought it was or how compelling it may or may not have been. I’d just stop and instead focus on myself existing right here, right fucking now. Mind habits are hard to break though because a waves job is to crash on the beach over and over again so… surfs up brah.
The point is that in trying to think of something to say about our girl Maisie Mae and ourselves I have been obscuring more important things. Like how I actually currently feel about it. Thinking of ways to explain how you feel stunt the actual feelings. We trap them in a word box rather than allowing them to expand, release and dissipate. Feelings, for me, are already elusive enough, more mysterious leviathans that live deep within my depths. I occasionally catch a glimpse of a massive tail swish, never breaking, but very near to the surface. Sometimes I think I see a dinner plate sized black eye staring back up at me as I gaze into the deep. Wait, are those fucking tentacles I see undulating? Wtf is down there? Sometimes I really don’t know.
Feeling- it doesn’t come easy to me. I learned at a very young age how to not feel. It was an unsophisticated, albeit effective survival tactic devised by a young mind surrounded by unpredictability, a feeling of abandonment and occasional witnessing violence or death or dealing with the threat thereof. Until Maisie’s accident I couldn’t cry, no matter how hard I tried and believe me - I fucking tried. Now tears and clucks and scrunchie ugly faced sobs surface frequently. The tail swish, the tentacles, the massive black eye that I thought was the size of a dinner plate is, in fact, the size of a swimming pool when it comes this close to the surface. A liquid black eye that beckons me to take a dip in its dreadful waters.
There’s this other thing that has prevented me from writing; it’s actually a story that I tell myself. A story that, until now, I haven’t been able to get around. The story is that for this style of writing I seem to require a visual stimulus to get my thumbs moving and typing. An eye enema, if you will. I’ve been telling myself that to write there has to be a photo associated with the writing. That’s how I’ve done it every time: I see a photo, my gut tingles and my two thumbs go to work tapping on this small rectangle of glass. Sometimes I don’t even know what the fuck I’m writing about. Sometimes all I get is the first word, I type it and then the second word is immediately available. Sometimes I get an entire paragraph out without having a single fucking clue as to what it’s about. I have to pause and go back and re-read it and then it typically becomes clear(ish) and then, and only then, does my conscious mind get involved and it starts to collaborate… sometimes it’s its fucking weird like that.
But this, I am writing this without a photo for the first time. There will, no doubt, end up being one in the end since I am depositing this word load into the social media womb, but the important part is that I have unraveled and neutralized an old story that no longer serves me. I’ve been doing a lot of that lately. I was waiting for Maisie to finally let me take a photo or use a selfie or something but she’s not into it and I have to respect that.
I realize I’m blathering a bit but this is how I am attempting to cheat my system. I have been unable to write an update about Maisie because, among other things, I feel a responsibility to do so, in a way that is accurate despite the tremendous gravity of the situation, and so I am sidestepping the pressure by writing about not being able to write. It’s a portal I suppose, a cup of coffee and a smoke that loosens up the mind sphincter so that I can finally birth something relevant.
It’s about understanding the clockwork in your head, how it ticks, you know? Once you do you can develop strategies and break your own blocks or at least sneak under the wire. On the subject of understanding- have you noticed how the part of our mind that deals with stress and the part that allows creativity are strangers that live next door to one another? Have you noticed that when you are in a creative flow you are not stressed and when you are stressed there is no flow? I suppose that’s another reason for my silence.
Stress can be quite elusive. Another scaled thing with shiny black eyes that darts about. Stressors though are more like tiny fish and when we see one, we think: “meh, fuck off, I can swallow your ass whole.” But the truth is that those swallowed little stress fish gather and add up into massive schools the bulk of which stay down deep enough that the light of our attention doesn’t reach them. And yet, sitting in our little pink boat (not that pink boat I mean the brain boat, don’t be gross) we feel them writhing under the hull. Individually they only make the tiniest bit of noise but collectively they are a screeching whale song, like a tinnitus whine that rattles your skull and swamps your rationality.
Have I avoided the subject of what this is really meant to be about enough yet? About how My Daughter is doing and about how we are handling it? It’s not that I don’t have a lot to say, I have volumes that I could write about the terrible and strange nature of spinal cord injuries. The functions one loses that people don’t really think about because no one talks about them. They are of a sensitive and possibly embarrassing nature, you see. Maisie is a a very private person and it’s not my place to splash her business all over the internet. Perhaps one day she will do that herself, she has said as much. But not right now because, she is fucking going through it.
My final excuse for not writing is that I’ve been waiting, waiting until I had some amazing news. Waiting until I had something uplifting to say. That’s what we’re all after, isn’t it? We want to hear about people who have conquered their trials and tribulations. We want to hear about people who were buried in shit and have transformed themself into a rose emerging from the foul terra of circumstance and change. I feel like there is some of that, but it’s not a one-sided coin and it would be dishonest and misleading to pretend it is. Light makes shadows, but shadow without light- is just night.
I’m all out of excuses now and if you’ve come this far I shan’t have led you down a dry hole. Let’s peak under the waves, shall we?
Quadriplegia, despite what most people think, is not necessarily a complete and utterly paralysation from the neck down. Quad, as in 4, means that all 4 limbs have, what could be total, or partial, paralysation, then there’s also everything in between such as trunk and diaphragm and all the rest. If you’ve been following along our terrible journey for a while, then probably you’ve seen the massive surgery scar that runs from the base of Maisie’s skull down to her upper back. A break in the spinal cord that high- C5 & C6, has a huge impact.
You know how, as parents, you don’t really notice your kids growing? It’s because you see them every day. It’s an incremental thing. But friends or family who haven’t see them for a while are astounded by their quick growth. Maisie’s recovery is like that. The gains are so slow, so small and incremental that we hardly notice. So, every once in a while, I think back to the ICU when she couldn’t move or feel anything at all. We had to scratch her head, pick her nose, everything basically.
Fast forward to now. Maisie has regained use of her arms except for her triceps and fingers. Her left triceps is starting to fire, and she occasionally gets some finger movement. She almost did a thumbs up last week! Still can’t flip me off yet but I am patiently waiting for that. So everything she does, she has to do with the remaining arm muscles she has use of. As a result, she is getting quite swole, those muscles are getting defined and rock hard but with the unfortunate consequence that she gets knots which translate into terrible headaches. Sometimes she has me smear CBD cream on her shoulders to try to rub and loosen them. My hands are strong but can’t seem to push as hard as she wants. I feel like I’m going to break her bones, tough little bird.
Although her fingers don’t yet work, she’s become adept at grabbing shit. It’s called tenodesis grasp. For a person with a spinal cord injury, you make sure never to stretch out their fingers so that they naturally start to curl in. Then by moving the wrist back and forth the fingers open and close slightly. There are a lot of adaptive gadgets that can help her, but she has refused them all. Initially she needed a stylus strapped to the back of her hand to use her phone, or a spoon or fork velcroed onto her hand in order to eat. No longer. She has a strap on the back of her phone so she can hold it up and uses her pinky knuckle to type.
In the spinal rehab center, someone told her she’d never be able to use a manual wheelchair. She hates the power chair you see. Its bulk and its joystick, she really doesn’t like the optics of it and the way if feels. Also, it really pissed her off, someone telling her what she can’t do, so she told us she wanted to try a manual chair and we got her one and now it’s all she uses. She can’t really do hills, up or down yet. But she has recently learned to pop little wheelies which will help her with doorsteps and the like. She pushes the wheels with her palms quite effectively.
I suppose I forgot to mention that we are back home and have been for some time now. I am back to work in San Francisco, 4 days on, 4 days off, but It’s been hard. People ask me if it’s like a little vacation- no, no it is not. While I’m away Kristen has to be home to care for her. There are things that need to happen that I won’t mention for decorum’s sake. There are a couple things that only she can do. I feel guilty about it sometimes.
When I’m home it’s easy to get lost in the details. I drown myself in them. When I’m away it gives me the terrible opportunity to pull my head above water and I see the vast and imposing ocean of time and tragedy that we find ourselves in. I think about Maisie and I shatter all over again. I feel like I am sleepwalking through my days away from home at times. Sleep itself has become elusive and life- a strange slow motion dream. But when I’m home it’s better, I’m there, I’m fully present in a way that has been difficult to achieve in the past. That’s a boon of being utterly broken, there’s nothing left but right now and when you see it- every little thing becomes extraordinary and appreciated.
But back to Maisie, she is really going through some shit right now. It’s not my place to go into specifics but as a parent it’s devastating to witness. The feeling of helplessness makes me want to turn my skin inside out. Every fiber of my being is stretched towards her, to help in any way I can, but she doesn’t want that because- of course she fucking doesn’t. She’s not supposed to be here she’s supposed to still be a college freshman. She’s not supposed to be confined to a chair she’s supposed to be out fucking off and living life. She doesn’t want people taking care of her, but she needs it to survive. Sometimes I feel like I’m ripping in half. Mentally and emotionally, I am leaning into her but physically I am pulling back because I know that’s what she wants. Ironically, she doesn’t want to hear hopeful or helpful words from me at all. “Don’t get all deep Dad” is what she says. I am confined to small surface talk for the most part- not my thing, but I’ll do whatever she wants me to do. She is currently being ultra pragmatic, I think because it’s safer than hope.
She now has the ability to fire her quads a bit which is amazing. It takes maximum effort, but she can get the right leg to quiver a bit. In my mind it, it dares me to hope. If I think back to the beginning, to now and extrapolate further it seems like a good sign of things to come. But she’s not having it. There is so much disfunction that she can’t help but notice that more than what has returned, I get it. More significantly though, I think she’s taking the safest route she can conceive of which is to not take the dangerous step into hope because hope that has been dashed is a continued devastation of its own. I understand, it is her process, and I have to respect it. And yes, I know, positive intention and aiming thoughts… yes, yes I know, I fucking know… but she doesn’t want to hear that right now. It’s her process, we all get to where we are going by different routes, and these are still early days. But lawd lawd it’s fucking hard for me to just shut the fuck up, so I’m trying to be a good listener instead.
We take Maisie to various therapy sessions throughout the week: PT & OT. But her fave is a place in Petaluma called Sci-fit. It’s like a gym for spinal cord injuries. It’s pricey and out of pocket but worth it. They have all the best gadgets and equipment, and the therapist scoops her up and gets her doing all sorts of things that normal PT OT therapies don’t.
Mornings are hard, hard for us all. Maisie wakes up in pain. Imagine being in the exact same position all night, unable to move out of it. Occasionally she’ll text us or her brother in the middle of the night when it becomes too much, and we’ll shift her. She often wakes up nauseous and needs to vomit but her diaphragm is too weak to actually make it happen so she weakly dry heaves into a bag and only manages to produce a little bit of saliva. But we get her up and situated, make her bed how she likes it then we leave her alone. Thankfully my Son Shamus is all in when it comes to helping and he has become the bedtime guy and takes care of all the things that need doing so Kristen and I can go to sleep before midnight. Maisie is very much a night Owl and we’re kind of old and very tired. Parents: you know that kind of tired I mean, like, when the kids are young helpless little meat potatoes and your entire life, and every drop of energy is devoted to simply keeping them alive. That kind of tired, and then some.
Maisie does her own makeup in the morning; she can brush her own teeth, she can put on or take off hoodies (except for pulling it down her back so we help with that). She has what’s called a suprapubic catheter which is a tube that comes from her bladder through her stomach that, at night, is connected to a bag and during the day we put a valve on the end of the tube and she lets us know when to come in and drain it. Perhaps I haven’t mentioned, she can feel when her bladder is full.
In fact, she can pretty much feel her whole body. Not necessarily how we feel and not necessarily all the ranges of sensation but it’s there. She often wishes she could go back to not feeling anything because she’s in so much pain and discomfort all the time. But quadriplegics who can’t feel are more susceptible to bedsores and skin issues and the like. Her left hip has been popping painfully as of late when we transfer her, so we are scheduled to get that scanned to see what’s going on in there.
Someone with what’s called a “complete” spinal cord injury will not regain any function- that’s it, no mas, done-zo. Maisie’s injury is “incomplete” which means, well, no one really knows what it means in terms of return of function. One Dr. one time told us there’s a 50/50 chance “something” might happen but what that “something” is- no one knows. As vague as that is, it’s the most concrete thing we’ve heard this whole time. With an incomplete injury a person is left in limbo. Do you mourn the loss or hope for return? It’s tricky business.
Spasms. They are a strange and tremendous thing in Maisie’s case. At night she wears these big ass boots so she doesn’t get what’s called “drop foot”. In the morning, we take those off and put on compression socks because her body can’t manage blood pressure properly. As soon as we touch her foot her entire leg recoils. Her knee bends and even her foot and toes curl. And, yes, I think I know what you’re thinking… “her legs move??” Yes, they do but unfortunately it has nothing to do with a brain/ body connection. It’s so odd to watch it happen but it is a clear indicator, to me anyway, that the body has an intelligence of its own independent from our brain. Sometimes her trunk muscles spasm. Initially it was her stomach muscles and when we would transfer her from wheelchair to bed her stomach would spasm and she’d shoot up violently and we would have to catch her lest she propel herself all the way out of bed and onto the floor.
Lately it’s her back muscles and while in her wheelchair her body straightens out and she becomes as stiff as a board. This causes her to slide down in her chair, so we have to forcibly bend her and then grab the sides of her sweatpants and lift while shoving her knees back with our knees to get her back into her chair. This happens probably 20 times or more a day.
Sometimes her legs will straighten and start vibrating. It’s crazy to watch. I don’t think I could make my legs quiver half as violently if I tried. The body is a strange thing. She is on a maximum dose of Baclofen which manages spasms but it’s not working so she might have to get a Baclofen pump. She has gotten good at swinging her arm around the wheelchair handle to keep herself upright when her stomach spasms start. It’s a problem and prevents her from doing a lot of things. On the upside, at least in my mind, the fact that her spasms are so intense are preventing muscle atrophy to some degree, so, there’s that, I guess.
Have I sufficiently shit my brains out yet? I think so. I’ve been plunking away at this for a week now? Maybe two? This is the longest it’s ever taken me to write a thing. It usually spews out all at once. Let’s wipe, I mean wrap it up shall we? And if you’re still here, thank you, and thanks for giving a shit about our girl. And especially thank you to all the folks that contributed to her GoFundMe, we have used most of it just getting her home and if it wasnt for all of you and for our friends who did and are still doing the work on the cheap I dont know what we would have done. There’s a lot of other good stuff happening within this huge and terrible thing. The good stuff though doesn’t exist in my memory or by projecting forward with hope. I don’t think that hope is the appropriate message to be broadcasting into what seems to be a very responsive reality. Hope implies a lack that you want to be fulfilled but in the background is the notion that it may not. I can find the good only by specificity looking for it in the little, so called, mundane moments. It’s a decision you have to make, it’s really as simple as that. Stop blaming and go on the hunt. Seek and you shall find- turns out that’s a thing.
There’s also something to be said about acceptance. I have known for quite some time that suffering is nothing more than an aversion to what is and aversions create resistance. In seeking a way out of- or a release from suffering itself, life has given me the most impactful lesson I could possibly have been given. I’d have preferred any other form of this that didn’t involve my daughter, but it is what it is. Acceptance has to be unconditional in order to derive freedom and peace from it, but perhaps I’ll write more about that later.
I’m happy to have finally made this mental bowel movement. I’m relieved to have been able to excrete it so that I can perhaps move onto other thoughts that deserve equal if not more representation. I’ll try not to be so scatological about it next time… no guarantees though. I hope you find something useful in all this or at the very least passed some pleasant time reading on the toilet, how apropos.
Toodles.
PS
It occurs to me, after finally writing this, that creative constipation is probably a more apt description than writer’s block. Immediately after finishing this, I had an episode of mental diarrhea and wrote two more things, just like that. Living life deeply and fully is like eating fiber and hardships, hard to swallow though they may be, are a mother fucking laxative. Happy pooping!
Dedicated to Miracle Maisie Mae
Toodaloo
