I've lost control of the narrative

It’s been falling apart in recent weeks. Pain is taking over everything, and it’s so bizarre to watch my life narrow, things that used to be important just falling back like dead leaves. I feel so much guilt for what abilities I’m losing—participation at work, this last chapter revising a novel that’s really important to me, connections with friends, you get it. This has never happened to me before, losing so much because I am just unable. Pain takes up so much time—today I decided it was like a bizarre, frantic child waving her arms and screeching in front of me as I try to walk down the street. Medication can push her to the side of me and even behind me for an hour or two, but then she’s back in front of me, and I can’t see or hear anything else.

Interestingly, I still find emotional pain far worse. I had an awful dust up with some of my family over the holidays, and I came home and fell into the darkest depression I’ve felt in decades. It lasted for a few weeks, and it was so much worse than physical pain. There was no screeching child, just a deep well of sadness and self-loathing that scared the shit out of me. I was nearly inert the whole time, and cried a lot. It slowly got better and is mostly gone now, and I get a perverse happiness when I think that today my physical pain isn’t as bad as that.

Tonight I just want to write about what this is like, and I’m I a good amount of pain right now, which I think is the correct time to try this. I taught today, only a few hours, and the pain was strong but workable, beside me. I took a few Vicodin throughout the day, but they don’t really work anymore, and I think that if they tamp it down a little for a few hours, the pain comes back with more of a vengeance than if I hadn’t taken it. And that fucking sucks.

By the time I left school in the afternoon, pain was full-on, and as I drove Kelly Drive, pink blossoms on the trees, I felt so half alive, pain like a shroud over me, tempering everything. There was some traffic, Friday rush hour, and if the pain was a 4 or a 5, I’d be so agitated, honking, trying to maneuver around everyone, my perceptiosn distorted as they are with the pain, thinking everyone was an idiot. But today the pain had passed the agitated stage and, close to a 7 now, was silencing, completely sobering. As I’ve written, occipital neuralgia is very localized pain, maybe two inches in the back of my head, radiating out my eye. It’s not full body pain like some people have; it’s not a bone ache; it’s not hellish muscle spasms. It’s just this sharp sharp line of hideous sickness in that two inch space, nerve pain, and today it dwarfed me, and in my car I was dulled, half dead, no sensation available to my body but this two-inch line, and in my head, knowing there was so much else to think about—story collection published with friends, lessons for next week, dinner tonight, Easter, my book, the garden—it was all there, way back in my head, and I felt deep sadness that I couldn’t reach it all, because all that was there in front of me was pain.

My body stunned as though cattle-prodded, my mind fell into the usual loops—this medication, take up the dose, make my insurance consider the surgery it won’t cover, call this neurosurgical practice that does peripheral nerve procedures, sleep when I get home, use the TENS unit or maybe heat, call the pain doc about trying the extended release morphine again, this time a higher dose, because the days I tried it last week were a complete failure, no help at all and then the meds that do help wouldn’t work on top of it, and then just think about that for a minute—fucking morphine wouldn’t work. Morphine, used in wars for decades, serious serious drug, drug for the end of life with cancer, drug to end the suffering, morphine for this is a total failure. How can that be? I drive up Henry more traffic and it doesn’t matter because I am so resigned now with this pain going home on a Friday afternoon, going home to nothing, no plans, just pain, that’s the evening, no nothing, no movie no dinner out no friends, no cozy time with my husband, just pain alone inert fetal ugly.

Inside the front door there they are the absolute loves of my life, husband and dog, both happy I’m home, especially dog, and I drop my keys in their spot and I look at my husband with dead eyes and tell him it's bad today its awful, and I don’t know what that does to him, how he hangs on with me because I am such a fucking drag, all I do is have pain talk about pain, talk about  treatments, talk about drugs. I don’t know where is he with it because he is far away from my little ball of self-absorption, self-obsession, and somewhere in there I have fear I’ll lose him but I can’t really hold that fear because pain takes up too much room.

Dog and I go outside to the couch on the porch and I call my pain doctor’s practice and get his colleague; all the pain docs there are young and smart and very kind and thorough on the phone; they never rush or condescend. I ask if I should maybe try the morphine again—my actual pain doc wants me off the short acting hydrocodone I take and on a 24 hour extended release narcotic, but I tried Nucynta a few weeks back and now this morphine that didn’t work. I ask if I can go up on the morphine, knowing in my heart that it won’t work even then, fucking morphine won’t work, given for gunshot victims, writhing-in-pain cancer patients, it won’t work on this two inch piece of shit pain in the back of my head.

He says he can’t recommend upping a narcotic dose on the phone. Then he says something I’ve never heard, says it in his young, smart voice, “the thing is, for occipital neuralgia, narcotics kind of suck.” And I know he’s right; narcotics for this pain worked for maybe a year, but now they're not working, and the extended release isn’t working and it’s just the wrong pain for those drugs. “So what else?” I ask, and he says, “it’s just that occipital neuralgia is really hard to treat,” and then he pulls up my chart and asks as he reads it “have you tried, oh yeah, you’ve tried, yeah, you’ve tried” and then he says maybe I should give gabapentin a shot again; it’s the first line for nerve pain. If not that he can call in Lyrica which I know makes people fat, but these days in the bandwidth I’m losing, things like weight are so distant, outside the bandwidth, one of the things that don’t matter anymore when pain is so central. So many things are outside the bandwidth, like fucks I could give, places I wanted to visit, the bike, all fading back because the pain is the screeching child and how can you focus on anything else, how can you clean your house, look at a recipe, give two fucks, get that dent in the car taken out.

But I smile on the street and I chat in the halls at school and I put every fucking thing I have into the classroom and I know I’m erratic in my energy because of medication but somehow I can get into my own internal medication, adrenaline, and feel it surge through me and make it possible to teach, to stand up there and be enthusiastic and encouraging, and funny, make those jokes when attention starts to flag, bring Trump into it, that’s surefire, and yes, run on sentences I copied from your last papers, and here’s the format APA requires on the references list, and The Grapes of Wrath, I feel my absolute love for that book still, it's inside the bandwidth, and those beautiful faces of my students, what they bring to the classroom, the very best of themselves, and they work hard, and some of them have horrible pain too, mangled arthritic hands and degenerating spine, and those students have my heart, but really they all do, sitting in the same seats they always sit, making friends with the ones beside the, I'll let you guys pick the groups, no more than three, here it is, the list of questions, hope you annotated the article well because if so the questions will be a piece of cake.

Shit yeah the pain is there but the adrenaline marches forth beside it and puts its arm out to keep the pain from moving forward into the street, and yes it’s hard, of course it’s hard, the pain is there and I hate it so much, do I ever say that how much I just hate it, it’s there, but I can smile and see the light in their eyes, and keep it together for the hour and the next and then I am done. As soon as the last few leave and I am wiping the board and shutting down the computer, the overhead, it’s fucking back, full on, and what the fuck.

The doctor on the phone says try the gabapentin and I see you have an appointment next week with Dr B, he’ll talk about the morphine then and I thank him and I get off the phone.

Inside the house my beautiful  husband is writing as he’d been doing all day, his day off, and there’s jealousy because my writing is so far back there, so far outside the bandwidth right now, like a bathing suit in November, just inappropriate for the season. My husband, my advocate, lets me cry, which I rarely do over all this, a few times a year, but today I am so fucking frustrated. Hydrocodone has abandoned me, morphine has turned its back, there is nothing for this pain anymore, and I am sick with how much I can’t get done. In my former life,  I saw myself as competent, as able to juggle so much especially at school, and I am dropping ball after ball and it is terrifying like I’m falling into pieces and I can’t do it anymore, I have the room only for teaching, I now my teaching is still top notch or I would make myself stop, disability, it’s solid still, but everything else is crumbling, and this isn’t me now the person I built myself to be, years at this school, 23 years, and I want to be a leader among faculty. I want to finish the book and try to sell it full steam. I want to be able to do so many things and just fucking can’t. I’m crying and my husband says stop. You have to look at this a new way. You are looking at this as your failure, like you are inept, failing, but that’s not what this is. You are sick. You are sick and you can’t do what you used to do right now. You just can’t until they get the pain under control and that is okay. No one can ever fault you for that, you’ve done so much at the school, been a leader before, juggled many balls at once, and it this point in your life you just can’t because you are sick.

He’s right, completely. It's meant as a comfort, and it is. It scares the fucking shit out of me because it’s a sickness with no end date, no cure. Julie O--- isn’t impaired. Julie O--- isn’t limited  in what she can do. Four and a half years ago, before pain happened on me like a personal biblical plague, I was so happy. I was finishing my second novel and sure I would sell it and happy with some changes in my work at school, and connected and in love with my husband, and I had nothing to complain about, nothing at all (of course I did I complain all the time because I am a whiner, but it was picayune stuff). If I’d gone forward since that time, upward without the pain, I would have just been a better version of Julie O---, published book, maybe, strong, more fit, more projects at school, the circle ever expanding.

Instead this.

The doctor sad you still have a bunch of gabapentin, go ahead with the dose you stopped at (600 mg 3x a day) see what happens or I’ll call in Lyrica.

I took the gabapentin, and my beautiful husband and I ate rice rolls I got from the truck at school, and they were good, and I said you know what? I feel like a soak in the tub and then I’m taking Buddy to the dog park. But inside the bath reading my iPhone, my eye phone, some intense exchanges on Facebook, and then my sight got blurry, and I’m so sleepy, incredibly sleepy, so I text my husband downstairs I’m going to nap a bit and I crawl into bed.

As soon as my eyes close the movie begins—it’s not my imagination—this is something outside of me but inside my eyes, and it’s a camera moving just for me, over the landscape, some craggy rocks, then hills, then it’s my own backyard, down and out a window that we don’t have and I think, oh, we need this window right over the garden, and the camera takes me out over the garden through the grass and into the back and it’s wheat and tall grasses and they blow in the wind gorgeously and I think this really isn’t my yard, or maybe it is or it could be, and the wheat and grasses grow and sway and the camera sweeps over them, sensuous, and then the scene changes and it gets more craggy, rocks, and warriors, benevolent, ready to fight an unseen enemy, and it’s Game of Thrones, it’s so beautiful, a beautiful gift of the medication. I open my eyes and it’s my regular room, so I close them and I’m back with the camera, and there’s nothing bad at all about any of this, not a bad side effect, and I know I took way too much, the doctor was wrong in telling me to take the high dose I left off at, but it’s okay, nothing bad is happening, and soon I’ll be asleep, no more dual consciousness, and when I wake up it’s dark outside and the pillow is wet.

A TV show downstairs with my husband, a cheesy one, and he’s off to bed exhausted because I’ve been terrible to sleep with the last few night, and he has to work in the morning, up at 4:30.

And I’m awake. Pain is back, the gabapentin, who knows, it takes a while to work in the body I hear so I guess I’ll keep taking it, but I’ll cut it in pieces and start slowly like I did before, titrate up because I can’t be hallucinating when I close my eyes.

It’s been an hour since I started writing this, and tizanadine and the TENS unit have taken the pain way down til it’s behind me. And that’s good because in a minute I’m going to have to edit this mess.

And oh yeah on Sunday I’m going to be in an article in the Philadelphia Inquirer about the new (draconian, garbage, horrifying) CDC guidelines for prescribing narcotics. I’m terrified about this article, about being so public, even though I want to be that example of a normal, successful, high functioning pain patient on narcotics (the reporter found me from my facebook post). That example has to be out there, standing beside the stereotype of people stooped in pain, disability, walking canes, or just junkies.

And haha the irony I’m going out on a limb as an activist for narcotics and fucking narcotics don’t even work for me anymore. Ain’t that some shit.

Upcoming: fourth round of Botox (hasn’t helped at all and hate the way it drops my eyebrows), pain doctor  next week to discuss another extended release narcotic, consultation with the neurosurgeon at Lankenau. Yoga.

Yoga is new in my life and it helps me. My teacher used to be a Daily News crime reporter, and she is the most amazing yoga teacher for me I could ever dream up. I’ve missed a week and a half of class because of travel and this sickness, and my body feels it, now craves it. Going Sunday.

And now I feel queasy about letting you see this post. In my heart of hearts I am disgusted by my facebook whining about pain, how much I talk to my friends about pain, but you know what? It fucking helps me so much. So I’ll put this on my facebook, maybe for all my “friends” to see or maybe just close friends I’ve grouped together, but really I want to make it available for all my 700 or so friends in the event that someone reads it and has an answer an idea. Earlier a friend said her friend has my same shit condition I have and a butrans patch has been magic.

So after a week of my big drama queen CDC post and then my crying with my dog post, when I feel so “look at meeee” it makes me sick, I’m posting this as well. Because this pain makes me selfish as shit, and it helps me beyond measure to know you are reading this.