I have the word “fight” tattooed on my left forearm.
I got this tattoo in early 2009, not knowing how much I would still need it 16 years later. It’s a reminder, on the wrist I used to cut, to keep getting up and trying again.
On that same wrist, still visible, is the scar from the first time I hurt myself on purpose, 30 years ago. That is not the only scar. There are many scars. But there is also a reminder to not let the darkness win.
I’ve had almost daily migraines since my brain injury four years ago, but they’re getting worse now. Most days, by the end of the evening, it hurts to even have my eyes open, or to be in anything but very dim light. Sound bothers me. Movement bothers me. My brain doesn’t work right, and I get severe nausea some days.
I am always exhausted. I take hot baths in the dark.
I will be 44 in April. I don’t want to live the next 40 years of my life this way.
I have tried new, just-approved medications. I have taken the tried-and-true migraine meds. I’ve swallowed thousands of pills and given myself injections. I’ve gotten Botox. Nothing works. Opiates help but I’m only given a limited number of those, and some days they don’t even seem to make a dent.
When I tell you that my pain gets up to a 5 or 6 out of 10 almost every, you might think I’m telling you that it isn’t that bad. But I’ve had multiple kidney stones, one of which had to be removed surgically. I’ve broken my clavicle on three occasions. I’ve had multiple toothaches at the same time. All of those hurt a lot, but none are a 10 on my pain scale. 10 was when I had an abscess in my face. 10 was screaming “what kind of fucking hospital is this?” when I had been given the maximum dose of intravenous Dilaudid and I was still in agony.
Pain that hits a 5 or 6 almost every day is enough to seriously impact my life. It’s enough to make me flirt with the idea of razor blades and high bridges.
I have good days, when the painkillers work and I manage to laugh and enjoy myself. But I have bad days when I feel truly hopeless. I keep picking myself up and continuing to fight, but it is getting harder and harder to do. Four years now of accepting my diminished potential, of letting go of dreams, of trying to dig my way forward and transcend, somehow, the absolute shitshow this brain injury has brought into my life.
I am stuck in a place of making do and settling for less than I hoped for. All because someone else decided he knew better than I did about how I tolerate a certain kind of anesthesia, and I reacted the exact way I’d told him I would– which is to say, Versed makes me try to fight off whoever is trying to operate on me. Rather than stopping the procedure, he or someone in his office slammed my head into something with such force that I am still affected every single day by the injuries they caused. And I will never know exactly how it happened. I just woke up with a bump on my head and a moderate amount of brain damage.
There’s nothing anyone can do, it seems. They can’t make the headaches stop. My therapist can’t help me process this so that it’s somehow okay. It’s just awful. It continues to be awful. It has been awful for almost four years now.
I have lost so much, held on to what I could, and only managed to gain a little through sheer force of will. I don’t want this to be my new normal. I don’t want this at all.
We are raised to believe that if we’re good people, if we follow the important rules and try to be kind, if we persevere and strive, we can arrive at a place of contentment and happiness. I know now that it simply isn’t true. You can get utterly fucked by the fates in an instant, and nothing will feel safe, stable, or whole ever again.
I don’t trust contentment or happiness. I don’t trust stability or safety. And I wish beyond my ability to communicate that I had never gotten this wise. I’d rather be ignorant of all of this. I’d rather be stupid, safe, and happy.
I used to think that an unexamined life isn’t worth living. Now there are things I desperately wish I had never had to see.
All of that being said, I had a very good day on Sunday. I had a very good session with my therapist on Monday. I am continuing to fight. I am looking forward to my next Bacon Blue burger at our favorite bar. I might visit San Francisco in March, and I’m tracking the prices of airfare to Boston, Vermont, and San Diego.
On my right forearm, I have a tattoo of a human heart, and banners over the heart bear two statements in Latin: cogito ergo doleo and dum spiro spero.
I used to be someone who cried a lot. Happy or sad scenes in movies, frustration or sadness in my own life. I used to cry probably more than was healthy. But it was good to cry.
Something changed. It started when I was 20, during a very difficult summer. I dropped acid and slept with my friend’s 33-year-old boyfriend while she was away on a trip. Then I went on a 40-day vacation to Boston, Vermont, and London– and on my second-to-last day in London, I fell down the stairs and sprained my ankle. Later that summer, I found out my parents were divorcing. I was a mess. Everything I thought I knew to be stable was suddenly shaky. A lot of the drama was self-created, but a lot of it wasn’t. These are just the highlights.
I had always been an exploder. I became an imploder. Instead of striking out at others I mostly punished myself. I guess I still blew up at people from time to time, and even before this I tended to take things out on myself– and I have the scars to prove it. But one thing that changed was that I stopped really being able to cry, no matter how sad I was.
I took an Eastern Philosophy class at the local community college (My Pretend College, for my hometown readers.) I don’t remember it being a very good class, but it certainly wasn’t the sort of thing that makes one silently sob behind their hands. But one night, when I was 21, that’s what I did. I started crying and I just couldn’t stop. I wasn’t making any noise. I don’t think anyone even really noticed at first. But I just could. not. stop leaking water from my eyes. I wasn’t really sad about anything in particular; I was sad about everything. And at this point it had been about six months since I’d been able to cry, so this one night I just couldn’t stop. I had friends in the class, and someone had to drive me home because the leaking would not stop.
Over time, and because of an abusive relationship that made me cry a whole fucking lot, I eventually regained the use of my tear ducts. But because my ex was so awful, I stopped fighting back because I’d learned it didn’t do a whole lot of good. The times I did strike out, it was mostly physical. He got in my face one day, mocking me when I said “you won’t let me have any friends.” He said it back sneeringly, “you won’t let me have any friiieeends.” And I scratched his face so hard that he bled. Another time I whipped him in the face with my leather jacket when he had me cornered and was screaming at me. But I did not tend to yell. And when I hit him, he tended to stop. The day I made him bleed, he told his shocked coworkers “you didn’t hear what I said to her.” You’d think that would have made him reexamine his treatment of me, but it didn’t.
When my brother did the bad thing when I was 30, I didn’t yell back at him. I collapsed into a heap of tears, because I’d learned that’s what we do with abusers. We make ourselves at pathetic and small as possible so that maybe they’ll stop.
Anyway. I can yell now. I have regained that ability. But I usually have my temper under control, and I tend to write letters when I’m really pissed off. So I can yell, if I have to. I just can’t cry.
As I’ve said in previous posts, this year has been really damned hard for me. Health issues, family issues, work issues, oh my.
I can’t remember the last time I had a good cry. And holy hell, I need one.
I still feel like things are mostly good, or will be mostly good soon. My marriage is astonishingly stable. My cats are astonishingly cute. I’m pretty good at my job. The head injury is finally loosening its grip on my brain. I had oral surgery and was in pain for longer than seemed reasonable, but that’s getting better too. I have a little more energy now. I feel less defeated.
I don’t know why my tear factory laid off all its workers. I don’t know how I can be profoundly sad and not shed a single tear. I well up sometimes, but my cheeks stay dry.
I feel emotionally constipated. This is not my usual state. Maybe it’s because of the vast number of pills I have to take to be a functional adult. Maybe it’s because I’ve grown up. I don’t know.
I don’t have a good ending for this. It’s just on my mind today.
Song in title is from a musical called Brownstone, but I’m familiar with it from Bette Midler’s cover.
In March, I got a concussion. The story behind it is pretty incredible.
I had some Major Dental Drama in 2019 when I decided to get dental implants done in Mexico. They were not done well, and what I went through was traumatizing and horrible and I would recommend that you don’t get dental implants in Mexico, because in my case (even seeing a well-reviewed doc) it made my oral cavity situation so so so so so so much worse. Unremitting pain for weeks. Don’t do it. So I’m already pretty fucked-up by/about dentists and oral surgeons.
But I need to get all this shitty shit repaired. So I’ve been seeing specialists in my area to get this whole thing managed and get some pretty new teefs put in my head. An important step was taking the old implants out. And that’s why I went to the oral surgeon in March– after much preparation and many visits with this surgeon and other specialists, I was finally ready to have that hardware yanked out of my jaw.
Let me back up a bit here: in 2004, I had my wisdom teeth out. I was 23, which is pretty late, but it was time. And the oral surgeon gave me Versed, which is a drug they use to knock you the fuck out. I did not react well to it. I apparently got combative, my heartrate got above 200bpm, and they almost had to call 911. But they got the teeth out, yay, hooray. That was a long time ago, but I have mentioned to anyone else who wants to render me unconscious that Versed is not a good idea.
I mentioned my paradoxical reaction to Versed to my (erstwhile) oral surgeon during our first visit, and he said “oh, we use Propofol.” So I was assured.
Well, readers, he fucking used Versed.
My last memory is of him placing the IV (on the second try, and I have great veins) and then YANKING my left arm before I passed out. No announcement that they were injecting me. Just POKE YANK BLACKNESS. I woke up about an hour later. Crying. Hysterical. Terrified. I asked one of the women in the room “Did something happen?” and she was like oh of course not you’re fine it’s totally normal to wake from anesthesia terrified and unable to stop crying for 20 minutes. They wanted to get my friend/driver Jay, to come in, but I told them not to. I was embarrassed and confused and altogether very, very upset.
Eventually they walked me out to Jay’s car and he drove me home. I had gauze stuffed in my face-hole so I couldn’t tell him what had happened, but I was obviously a mess.
Jay gets me home. My husband puts me to bed. I couldn’t really walk on my own. I spent the day sleeping it off.
It wasn’t until the next day that I was laying in bed with my husband and he noticed significant bruising on my left arm. Lemme show ya:
This was a few days after. It was bad.
Those are obvious finger-marks on my arm. I was black and blue for a couple of weeks. I also discovered muscle strains in both of my forearms, which weren’t visible but were very, uh, feel-able. As the days went on, I found a lump on my head. I felt like I had whiplash, my neck and shoulders were all messed up (still are!) And a few days after the surgery, I figured out that I most likely had a concussion. So I went to see my primary doctor, who is amazing, and she said “yup, that seems like a concussion.” And then a week or so later I realized that I was obviously suffering from Post Concussion Syndrome, because the dizziness, confusion, lack of concentration and other AMAZING! FUN! SYMPTOMS! were not going away. This was also confirmed by my doctor. This isn’t my first concussion, nor is it my first Post Concussion Bullshit rodeo. It’s bullshit, in case you were wondering.
Sooooo I filled out FMLA paperwork, which was approved. I got referred for a CT scan, which thankfully is clear. And I was referred to brain injury rehab, which I’m being evaluated for on June 1st.
During the course of all this unneeded bullshit, I emailed my surgeon’s office. I wanted to know what happened. I wanted to know if they’d given me Versed. After a lot of hemming and hawing and “why don’t you just call?” and “I’ll have to get back to you on that” I got a 2000+ word screed from the surgeon, in the middle of which he sheepishly admitted he’d given me Versed. He had reasons, of course. It’s a very safe drug! Complications aren’t unheard of! Other drugs can also cause bad reactions! And to counteract the Versed, they pumped me full of Ketamine, which made it worse. Then they finally, finally gave me FUCKING PROPOFOL which is what I had told them I tolerated well, had experience with, was comfortable with– a drug that, without prompting, the surgeon had told me was the standard drug they used for such procedures. And they had to give me such massive amounts of Propofol to counteract the Versed and the Ketamine that I stopped breathing several times.
I was livid. I remain livid. Obviously, he’s fucking fired– which I decided after I went to a follow-up visit and he fucking POKED my healing mouth-wounds with a POKEY THING and it HURT and I swear the man is a fucking sadist. This wasn’t the first or even second time he was way too rough with me, but it was definitely the last time.
It’s over two months later, and the symptoms of the concussion are still affecting my work. It’s affecting my home life. I can’t reliably concentrate, keep track of time, retain information, or not fuck up everything all the time because of this. I have to go to rehab because of this. It has put a strain on my professional and personal relationships. It is the opposite of good. I can drive most days, because that only requires 10-20 minutes of concentration at a stretch. I can usually do that. I can make simple recipes, but I’m likely to skip steps or mess up if I try to do anything that isn’t super familiar. I can’t make decisions or figure out what the right course of action is. It has made me dependent on my husband in ways I don’t want to be. It has made me dependent on my coworkers in ways that cause me to feel shame.
The words that keep coming to mind are awful and devastating.
But Kate, you’re writing! It seems like you can still write! Yeah, I can do that. It’s one of the things I can do. Which is good, because I’m in college right now in addition to working 40 hours a week. My essays aren’t brilliant, but they’re adequate, and my grades haven’t really suffered.
But I’m exhausted all the time. And if I push myself too hard, all I can do is sleep. And “too hard” means “the way I expect to be able to perform, and how my job expects me to perform.” So it’s been problematic. They’ve been pretty great about it, but it sucks.
Ever since I started my Fitness Quest last year, I’d been feeling a lot better. I’ve had chronic pain my whole life, depression and other mental health issues for as long as I can remember. Walking around my neighborhood helped with that. Along with the pills I take every day to keep me on a relatively even keel, walking made me more emotionally healthy, gave me energy, and helped me lose over 40 lbs.
But now I don’t have enough energy to walk.
I’m used to being sick, is my point. Except, for almost a year, I wasn’t really sick. I wasn’t depressed most of the time. I wasn’t in a lot of pain. And this health crisis has put me back in the position of being feeble, of needing help, of being a fucking invalid.
I hates it, my precioussesssss.
PART TWO:
Keep on Keepin’ On
But here’s the reason I titled this post the way I did:
I take my pills every night. I’m on Lexapro for the crazy and Yaz (birth control) for the really crazy, because I suffer from Premenstrual Dysphoric Disorder so severe that, when unmedicated, I’m suicidally depressed for over half the days out of every month. Everyone hates me, is out to get me, isn’t doing their share, and I might as well just die because nothing is ever going to get better.
I’ve been on Lexapro for a few years and Yaz for about as long. And they’ve been miraculous.
You know what else is miraculous? I’ve been employed steadily for almost 5 years, first through a temp agency, and then I got hired permanently (because of a temp placement!) by the county in which I reside. I went from being on food stamps to working for a place that administers them!
The steady income, the feeling of usefulness, and just the stability of it all has also had a miraculous effect on my mental health. My longest period of unemployment in those 5 years is two weeks in between temp gigs. AND my union has a free college program, and through that I’m working on getting my AAS in Social Work. Then I’ll transfer to Portland State, which has an excellent Social Work program, to do my Bachelors and Masters degrees. This is already in the works! Do you know how much shit you can do with an MSW? A lot! A lot of shit!
It took until I was 35 to be able to show up to an office and not quit within a year or mess up so badly that I got fired. It took until I was about 37 to find the combination of drugs that keeps me relatively sane and healthy. And now I’m 40 and I have good hair, a husband I genuinely love and like, wonderful/diabolical cats, and a steady job. I don’t have trouble making rent. I have retirement benefits and good health insurance. I’m the breadwinner in my relationship. I don’t have to worry that I’m going to have to choose between food and gas. I have a car that hasn’t exploded yet. It’s all good, and a lot of it is better than good. A lot of things are great.
And I’m grateful. So incredibly grateful.
My mental illness was so bad for so long that my brain spent most of my life, from the age of 10 or 11, intermittently trying to kill me. I had calmer, better times, but they were short. And it always came back to the depression and the borderline and all the havoc they caused in my relationships and the inability to keep a job and the kinda-sorta being homeless and the calls to my Mom that scared the shit out of her because her daughter just wanted to die and couldn’t think of a good reason to keep going.
I kept going. But it took until I was 29 to learn what it felt like to not wake up and immediately feel overwhelmed with dread, and that little peaceful little meadow in the dark forest was a place I only stayed in for about nine months. Other than that, my life was pretty fucking awful from the time I was 11 until I was in my late thirties. It took a couple stays in the loony bin, going through (and this is not an exaggeration) at least 20 therapists, trying more medications than I can count, and fucking up a whole lot for me to get here. I wrecked friendships, relationships, people, myself. Oh, and a few cars.
Looking back on all that, it’s hard to tell anyone else that they should go through what I went through because eventually! you might!?! be happy!!! but goddamnit, I’m so glad I didn’t die. Because things right now, other than the head injury and the stupidity that it entails, are awesome.
Did I mention that I have good hair?
I long suspected that if you could just remove all the nasty mental illness shit, I’d be a pretty happy person. And it’s true! Isn’t that a trip?
This might not be the message of hope that Hallmark wants to sell you, but let me repeat it. I am so glad I didn’t die.
I might have to start wearing a helmet, though. Concussions are a bitch.
About eight months ago, I started hanging out with T. T is awesome. In mid-July I went over to his place after a party and sort of never left. It is a good thing and we’re happy and I’m sure I’ll tell you all more about him soon.
I am not dead, in case you were wondering.
I had this idea in my head of writing some big thought-piece about feelings and blame and letting things go, but I am hung over and in pain (I threw out my back!) so I think I’ll just not do that right now.
So K is getting married. I know this because I am an idiot and I checked his Google+ page the other night. And he’s getting married. Whoop-dee-fucking-doo. I’m happy for him. But I don’t know whom to be more jealous of– her, because she has HIM, the love of my life, my cute geeky boy, blah blah blah– or HIM because he found someone he wants to spend the rest of his fucking life with and I’m alone, all alone, forever alone.
He was like my poly role model, people. And then pretty much as soon as we broke it off, he hooked up with this [redacted], and now they’re getting MARRIED.
Yeah, yeah, move on. I know. I have.
But he’s seared into my soul. Never loved anyone like that, not before, not since. Blah blah blah.
I met someone. He’s older than me. He’s kind. I don’t want to jinx it. It’s new. It’s open.
My poly role model is getting married, and here I am four years later, still doin’ the free-love thing. Odd how things work out.
And it’s odd how meeting someone new can throw all these things from my past into such sharp relief. I forgot what it feels like to let my guard down. I forgot what it feels like to be adored back. But now I remember.
One night with K, after some private adult aerobics, he rested his head on my chest for a few moments. That may have been the closest he ever came to tenderness. I can’t believe I was so in love with someone who wouldn’t/couldn’t/didn’t even hold me. Or that I spent 15 months of the last two years with a guy– well, I’m done saying mean shit about Emery for now. BUT I AM THINKING IT.
I was in a car accident on November 2nd, 2011. It was the other driver’s fault. His insurance company doesn’t see it that way, and is refusing to pay out for my medical bills or the loss of my car. The lawyers I’ve spoken to agree with me, but my case isn’t strong enough for them to take on.
I am in pain. Every day, I am in pain. I have a headache every day My shoulder feels like I’m being stabbed. My back hurts. Every day.
To get on disability, I need to verify that I am injured.
To hire a lawyer, I need to verify that I am injured.
To verify that I am injured, I need to see a specialist.
To see a specialist, I need to get into a low-income healthcare program.
I have been waiting to get into the low-income healthcare program since February. They were supposed to mail out my card two weeks ago. As of this morning, they have not mailed out my card.
Even with the mythical card, I will still have a $500 deductible, every month. This means that I will be responsible for the first $500 of my medical care. And it resets each month. And each month, I need to reapply. So if I need to get tests or treatments, I need to pack them all into the same calendar month so that I don’t have to pay more than $500 out of pocket. And I don’t know how I’m going to scrape together $500, anyway. But it’s better than not having any coverage at all.
I make $10 an hour. I work as close to full-time as I can. I am always in pain. The work I do, while simple and not particularly physical, aggravates my injuries. I can’t afford to not go to work. And my job hurts me.
So I spend a lot of time on hold. I make a lot of phone calls. I have to be a tireless advocate for myself when I have never in my life been so tired.
I get out of bed. I go to work. I make the calls. I get put on hold. I wait, and wait, and wait.
So I may have mentioned my teeth and the removal of said teeth. The dentist yanked three of my perfectly serviceable molars out today just because of a wee widdle toofache! A toothache that made me want to go play in traffic, but still. Doesn’t it seem like just ripping them out is overdoing it a little?
Anyway, I prepared the lovely image above to show what was done. It makes it look like it was the right side, but actually, it was all on the left. I don’t know why I did it that way, but it seemed to make sense. Shut up, I’m on painkillers.
The teeth marked in red never showed up in my face, so we don’t have to worry about them. The ones marked in gold were removed during my wisdom teeth extraction in 2004, and my word, please do remind me to tell you that story because it is amusing! If by “amusing” one means “horrifying!”
The teeth marked in blue are not in my face anymore as of about 7 or 8 this evening. I have very gingerly felt the area with my tongue, and it’s weird to have nothing there but bloody gums. But you can’t see anything when I open my mouth normally, my cheek isn’t sunken, and the swelling has gone down to be hardly noticeable from the outside. I ache a bit, but it’s nothing like the agony of losing my wisdom teeth.
Finally, that tooth I marked in green. That one needs a root canal, and has a temporary filling right now. I do not look forward to the next step in this process, but it must be done. Roooooot canal. Have you ever had one of those? I recommend you avoid it. Brush and floss, kids. Don’t be like your Auntie Kate.
As brutal as it was having three teeth removed and one prepped to be violated in the worst way a tooth can be, I’m glad I had the courage to just get this done. I am terrified of dentists and their minions. And tonight, even with 2mg of Ativan in my system (which would probably knock you, dear reader, on your ass) I was shaking uncontrollably in the chair. The doctor and his assistant checked many times to see if I was all right. And I was. I just couldn’t stop the shaking. I hummed when I was scared. Not anything with a real melody, just notes. Hmm hmm haaaaa. I squeezed my hands together. I asked for more Novocaine when I felt the slightest twinge of pain, and the dentist was great about keeping me comfortable. And as he strong-armed my teeth into giving up and coming out, while I wasn’t happy to be where I was, I coped. No crying. No screaming. No needing to get out of there and have a mid-procedure, blood-soaked cigarette.
I’m proud of myself, in other words. And relieved that I found a dentist whose staff I am comfortable with, who laugh when I crack jokes to lighten the mood (my own, if no one else’s.) This could have been a much worse experience than it was. I’m grateful it went smoothly and now I don’t have to hurt anymore.
Now to tackle the rest of my teeth! I think I might give it a week or two, though.
I had an EMERGENCY DENTAL visit today wherein I was notified that I need an assload of work done on my chompers, not in the least three (3!) extractions ASAP so that I stop feeling like someone’s hammering a nail into my jaw.
Still working out how I’m gonna pay for all that. Looking into cheap options.
Have I mentioned how much I hate the dentist? I hate the dentist. Ask me about my wisdom teeth sometime.
This might help with the weight loss plan, as I soon may not be able to chew. Then again, ice cream is soft.
