Bibliotherapy and Biting the Bullet

Friends, I started intensive vision therapy this week and let me tell you.

It's terrible and awful and also life-changing at the same time. Things are different.

I'm to do this intensive part for two full weeks, including weekends. The way that it works is that I'm laying on this bed...of sorts? With vibrating pads underneath it. The vibrating pads do their thing, then I look at this bright dot that changes colors, and there's some infrared stuff that goes on, but that's not the part that's making a difference. Or maybe it is. I don't know.

The tangible difference is being created by the rotation of the bed. Rotation is the wrong word, but it's the only one I can think of. It doesn't move me around in a circle side to side, but more in this oblong rotation up and down and diagonal. It's not fast, but it is movement. It moves in such a way that with the sensory deprivation of the pitch black of the room, it makes me feel like I'm five years old again in a moving car. I got so motion sick I almost had to stop the first two days.

And I do that for an hour every morning at 9:30.

I've had words for my vision therapist. She laughs - she's heard it all before.

One thing that I did not expect at all was how acutely I became aware of my brain injury. It's working specifically on that part of my brain, I can tell, because everything got harder even after day one. But that's by design - or so I'm told. Right now, what's happening is that this therapy is breaking down all of the accommodations I've made for the past 46 years of my life to compensate for the deficiencies that come from my eyes not talking to each other. I thought I was making progress with the regular vision therapy I was having.

I was not. Or, I was, but just not this type of progress.

I thought I was miserable before when I was adjusting to regular vision therapy.

I absolutely, without a doubt, was not. Now I'm irritable, overwhelmed, frustrated, nauseous, low-key dizzy, and either right on the verge of or in a full-blown migraine 100% of the time.

This may sound like an awful way to live, but this is legit how I felt most of the time, and I'd had some improvement in my symptoms, so mostly it's just frustrating and I'm mad because I feel like I'm backsliding. I know I'm not, though.

This might be among the most stressful weeks of work I've had since I opened my practice. Is it THE most stressful? No. Close to it, but no. It's just a signal that changes need to be made, and I have two fantastic people to hold me accountable to those changes. You know how I know something is changing? Even in the stress, I'm calm. I feel ok. We had a hard meeting earlier today, and you know what? I didn't freak out. Was my knee-jerk reaction to avoid? Yes, but instead I was able to lean in. I feel no panic, I feel no awful feeling of doom or like I'm going to burst into flames. Has it sucked? Yes, but it's absolutely not outside of the realm of things I can handle. It's so weird that I feel peaceful, but I do.

Also, I'm surer on my feet. Do you know how many days it's been since I've tripped over something or stubbed a toe or done something mindless to hurt myself? Five. Do you know what my all-time record is of number of days I've gone without tripping over something or hurting myself in some way? ALSO FIVE.

Also, my eyes don't take as long to focus on what I'm looking at.

I've also focused in on something important. Really, really, really important.

For the first time today, I acknowledged my limitations out loud that are due to my brain injury. Because I've struggled to accept that I even have a brain injury, that's for other people, there's no way in hell I can acknowledge the limitations that come with it. I struggle to communicate, I become so easily overwhelmed, and then when those two things collide, I become a total mess. That's to say nothing of the difficulty focusing, and all of the other stuff that I so easily put in the ADHD box when it's absolutely, without a doubt not that. This is different.

That's also to say nothing of the fact that I lost my ability to read. I think it's going to be coming back, but I can't be sure. I've also found a work-around that is listening to audiobooks, but that's not always how I want to digest information and also if I read something particularly compelling, I end up crying in my car, which has happened no less than four times this week alone with the book I'm currently devouring.

This author is talking about my brain injury journey, and at first I was incredulous: My brain injury journey? Whose brain injury journey is that? I don't have a brain injury. All of the things that the author talks about that she's heard from other people that have been really hard to hear or invalidating? I've said them to myself. No one has even needed to say them to me, because I stop myself before it even gets to that point. That's how self-invalidating I am about this. I'm cringing even writing about it.

Three chapters into this book, I signed up for a brain injury support group. I was still not ready to talk about it openly, but maybe I could to other people who had similar experiences.

I've been both ignoring the fact that I have a brain injury and been extra hard on myself because it shouldn't be this way. I've realized that I've been beating myself up for something I can't under any circumstances help for the past four years, one month, and eight days of my life. Every time I got frustrated because I was too tired to do what I was doing and I couldn't push through it. Every time I couldn't complete a task and didn't know what to do or even how to ask for help. Every time I actually asked for help, which was rare.

You know what I did in this meeting earlier today? I even called it "Playing the brain injury card" as if it's not a real thing and I'm milking it somehow. As if this isn't a debilitating injury that I'm going to be dealing with forever. Literally, forever.

So, I've discovered my March Madness goal this year, now that I know my thyroid tumor markers are still undetectable and I can put this on a shelf for another year - I want to walk away from my neuro appointments with better strategies to support myself and how to ask for more support from others, and how to be able to be open about my brain injury in a way that feels safe for me. I need to be able to learn how to articulate what I need. I am surrounded by people who want to understand, and if I can't give them the opportunity to both do that and be supported at the same time and not feel so alone, then what the fuck am I doing?

I could also beat myself up for not doing this work three and a half years ago, but I'm choosing to celebrate that I even came to this party instead of beating myself up for being late. But let me tell you, letting go of this next-level stubbornness is going to be one of the hardest things I've ever done, but also a game-changer.

Brain Surgery-Versary

Content warning: You might want to skip parts of this if you're squeamish.

I had brain surgery four years ago today. At this time, in fact, I'm guessing Marvin was already out and they were making sure they got all of it, or maybe they were working on making sure my brain wasn't bleeding, or that my body didn't go into shock from the drastic and immediate reduction in intracranial pressure, or that my brains weren't going to leak out my ears or something. (I'm pretty sure that'd been happening, though, before surgery for a couple of years. Bleeding sometimes out of my left ear, I'm pretty sure, was a symptom that I was experiencing because it mysteriously disappeared after my surgery.)

Or maybe they were putting on the titanium mesh or closing up the dura or something. Want to see what it looks like? This is my actual skull. So fucking cool. The stuff that looks like weird amoebas is actually mesh because they couldn't reattach my skull in those areas. Marvin was one hungry bitch.

I like to think about the whole procedure. Yes I watched a video of one. It was literally one of the most fascinating things I've ever watched. I've watched one of all three of my surgeries in 2021. 

DID YOU KNOW THAT WHEN YOU GET A LAPAROSCOPIC HYSTERECTOMY, THEY HAVE YOU PRACTICALLY HANGING UPSIDE DOWN? YOUR LEGS ARE ALL THE WAY UP IN THE AIR.

DID YOU ALSO KNOW THAT WHEN THEY REMOVE YOUR THYROID, THEY HAVE YOUR HEAD LITERALLY HANGING BACKWARD OFF THE TABLE IN WHAT'S CALLED A ROSE POSITION? (No wonder my neck hurt for like four days after that one.)

It's also difficult to think that my head was held in this for upwards of 12 hours, but also I wouldn't want my head flopping around either, so I guess it's fine. 

(It's called a Mayfield Skull Clamp. You're welcome.)

This year has been better than the previous three to be sure, but not without frustrations. My primary one?

Marking this anniversary, even in my brain. Memories of it can't pass through my nervous system yet, which tells me that I have a lot of work to do still on the trauma recovery side of things. But I've been here before, and I know that there's a way out. I just have to take the way through the trauma and I don't like it. I want it to just be another day on the calendar and the fact that it's not is unendingly frustrating for me. 

But one of my internal rules is that if I am to see the frustrating side, I also have to see the good part, which is that my 2021 nightmare was over as of 1,461 days ago. I woke up from surgery without a headache that I didn't even know I'd had for twenty entire years.

I no longer had to live in fear that I was going to have a seizure or some other medical event and hurt someone else. And boy was I afraid. There were things like "If you don't do this surgery sooner rather than later, we're going to have to seriously explore you giving up your driver's license until you have it" being thrown around.

Also, I woke up no longer having a brain tumor and I'm pretty sure I still don't as of now (I'll know for sure in March), so that's something. Also every year that passes, my chance of recurrence decreases. I'll be considered out of the woods at the 10 year mark, but next year is also a really big milestone. They may move me to MRIs every 18 months after my next one, so that's also really something.

I also can't not look at the gains I've made, especially this year. My cognitive function is better, even if it's not 100%. My executive function is better, even if it's not 100%. My energy is better. Also, quite frankly and most importantly, so is my will to live. That might sound strange, but it's where I am. At my lowest points of this journey, I'm not afraid to say out loud there were times that I was mad, like truly angry that I survived. (I don't feel this way anymore, not even close. Actually, the exposure therapy that I did earlier this year helped this part more than anything.) I thought I was going to be that low-functioning forever, and I didn't want to live that way. No matter how much my medical team tried to reassure me, I didn't believe them because I wasn't getting any better. I am not sure I can describe the helplessness of waking up one morning with drastically lower cognitive functioning, knowing it, and not being able to do anything about it. I hope I never have to feel that level of frustration again.

I can't remember when things started to turn, but it was, without a doubt, this year. Maybe it was functional medicine. Maybe it was changing my diet. Maybe it was going on Zepbound, which had a drastic and overnight impact on the level of inflammation in my body, and I'm guessing, my brain. Things just started to feel easier.

Do my frustrations around my cognitive function continue? Absolutely. But they're far, far fewer than they were even this time last year, so growth and recovery are happening actively and noticeably. I've also learned a lot of things about myself, the things I value, and how I want to lead my life in a way that I wouldn't have considered otherwise.

Am I delusional enough to say that my brain tumor was a blessing? Absolutely not. All things being equal, NOT going through that would have been the optimal scenario. But as strange as it sounds, I needed to find the fragility in my life, because it existed whether I acknowledged it or not. It allowed me to acknowledge that I'm a medically fragile human, and so are all of us to a degree. We just realize it at different times of our lives.

There's a lot of hope to be had, which feels nice. I'm starting to get back to my old self, which also feels nice. The best thing I can do for myself is keep going and remember that putting one foot in front of the other is healing, too.

Bone Loss PSA

Here's the great thing no one tells you about yeeting your reproductive organs and your thyroid. See also: Going through menopause.

Well. They tell you. But they don't, like, make a big deal about it.

I'm at high risk for bone loss. My doctor literally told me that with a shrug and said, "No big deal. We'll just do bone scans every two years." I have osteopenia in one of my hips, but it's more of a "Watch and wait" scenario, so nothing to be done about it. I'm not in any kind of pain, I'm not worried about it. I mainline vitamin D every morning and move on with my life.

You know what bone scans don't look at, or at least don't pay much attention to?

Your feet.

Your hands.

Your toes.

Your fingers.

Really anything below the elbows or the knees that isn't a major joint, doesn't get all that thorough of a look. However, in doing some digging, those places are where bone loss is most likely to show up first.

They're concerned about bone loss in the hips, pelvis, ribs, and spine, which I get. Those things breaking sounds unbelievably painful and have a bigger impact on quality of life than, say, your pinky toe. I just wish I had known that before I started agreeing to them so that I could advocate for my whole skeleton to be scanned, because there's absolutely a way to do that.

So two years ago, when I was catapulted off of my front steps by my dog and broke my hand instead of breaking my face, there might have been a reason for that.

Or, the other day when I had a knitting-related accident (and I 100% am sticking to that story simply because it sounds hilarious and is simultaneously true), maybe under different circumstances, my foot wouldn't have broken. But the circumstances are what they are, so I hobble in a boot for the next two weeks. Thankfully it's just a chip off of the outer bone, but it's painful and annoying. 

So, if you're a human who has lost hormone-producing organs in a surgical manner, or if you are going through perimenopause or menopause, ask about bone health at your physical. Just do it.

Also, do strength training. I've now heard from three different medical professionals in the last six months that strength training is the key to bone strength. That's the blessing in all of this, if there is one to be had - now I get to get jacked because I can't currently walk very far. So, strength training it is.

Choosing (Metaphorical) Violence

NOT TODAY, FBI,  NSA, OR ANY OTHER GOVERNMENT AGENCY MONITORING MY SHIT. I am not a violent person, I have no actual physically violent intent.

What I’m actually talking about is showing up for myself.

What I’m also talking about is sitting with and accepting, nay, embracing, the idea that I am not as likable as I used to be. And also that it’s not that I like people less, it’s that I’m finally able to sit with the idea that people? Not a huge fan, generally. I’ve also never admitted that before recently. Not because people are by and large bad, but because for…we’ll say 40? 42? of those 45 years, I was absolutely, unequivocally, surrounding myself with the wrong people.

It feels nice to say that out loud and take ownership of that. I’ve been investing my energy into being liked, and sometimes loved, by people who will never in their lives treat me with even a shred of respect or humanity, no matter what I do. So I stopped trying. That happened about two years ago and I’ve been on this crazy path of fully owning my worth ever since.

Has my job hardened me? Maybe. I’m not so sure. If anything, it’s woken up a side of me that’s been sleeping for too long. 

If I could pinpoint the actual reason, it was 20 years of medical gaslighting that has resulted in now five entire years of an onslaught of unending medical trauma, and how that unleashed a tsunami of complex trauma in other areas of my life that I didn’t know existed previously, but you know, I could be wrong!

I could be wrong.

For a long time addressing this stuff felt like going to said tsunami armed with a paper towel, and not even one of those normal-sized ones. One of those ones that you rip off and it ends up being like a tiny sliver of a paper towel. I’m finally making headway, and this is my sign that I’m around the right people.

I’m constantly bringing up to my clients that adage of, “Before you diagnose yourself with depression or anxiety, first make sure you’re not surrounded by assholes.” I was so deeply entrenched in making it work with the people around me that I didn’t apply this to myself. I had legitimately emotionally violent people in my life who actively benefited from me putting up with their abusive behavior, and I almost refused to look at it, because that was more painful than just keeping what I thought was the peace. My peace didn’t matter in any of these relationships.

So, surrounding myself with the right people: Ongoing. Still have to break Very Old Lessons and Habits that tell me that I don’t get to choose 100% of the people who come into my space, mentally or physically. I sure do. Everyone does. I don’t have to put up with anyone’s bullshit, no matter how close we were previously. (And 99% of the time, we weren’t that close in all actuality, which showed itself THE LITERAL SECOND I got healthier and started to have boundaries.)

Not allowing abusive behavior, PERIODT: Ongoing. To show how far I’ve come in that department (though I still have a long way to go, again, old habits and lessons and shit), one of my very first staff members called me a fucking asshole in a meeting AND I PUT UP WITH IT at the time. Did that person leave a few months later? Yes. Did I ever speak to them or their spouse, who was one of, if not my absolute best friend because I couldn’t allow that kind of venom anywhere near me ever again? 

I realize the way I asked that question was weird. I haven’t spoken to either of them since.

Do I now call people out for, for example, “well actually”ing me because their only reason for doing that is to try to embarrass me publicly and fuck that noise? YUP. Do I call people out for getting defensive when I discuss my experience of something and they’re uncomfortable with it? Sometimes, but even if I don’t, I know what’s happening and I’m able to acknowledge that people’s discomfort with my experiences of them is not actually a “me” problem.

Do I allow people to foist their insecurities masked as judgment on to me? NEVAH.

For so long, I’ve shrunk myself for the express purpose of making other people comfortable AND trying to control what they thought of me.

So where do I go next in this campaign to choose violence?

MY MEDICAL TEAM.

Two things are currently in process:

1. My gastroenterologist, now that it’s Officially Official that I have Barrett’s, is trying to put me on Pepcid. Barrett’s is a pre-cancerous condition of the esophagus, caused by GERD. I’ve gotten the GERD under control this year - so much so that my guts were “flawless”, save for some tiny spots of inflammation in my esophagus and ONE polyp in my sigmoid colon. (There was also some scar tissue on that spot because a polyp has appeared in now five colonoscopies in that exact spot, but the previous four years, it was precancerous. This year, just benign. For reference, my first colonoscopy yielded 13. Also I way overhydrated this year, but I learned a very important lesson about chugging the prep solution and how totally important that is.)

Anyway, I said no. My doctor did this kind of head tilt at me and was like “I’m going to call in a prescription for it. Just take it once a day.”

Again, I said no. Pepcid has carcinogens, I’m very much entering into my “Let’s be very vigilant about what I put in my body so that I can minimize my cancer risk as much as possible” Era, and I’m not interested in trading one cancer for another, which is a lot like what this is sounding like. Was there anything else I could take that wouldn’t be as harmful?

No. Also I know how painful esophageal cancer is, right? And that any cancer that might be caused by Pepcid is certainly going to be easier to deal with and also esophageal cancer, unless caught SUPER early is a death sentence and I know that, right?

Pulling out the big guns early, but she had several good points and pointed me toward more literature about Pepcid and cancer risk and quality of life and things. 

The point that I made to her was this: 

I trust you, I do - and after twenty years of medical gaslighting that ended in me having my skull cracked open and a lifetime of cognitive difficulties that I’m now looking at, I trust myself more. Come at me with literature, come at me with scare tactics, whatever works for you - but this will be a dialogue, no matter what. I have a say, and I will make an educated decision - based on facts both in the literature AND in how my body works. Both are equally valid and no matter how you approach me, the validity of that will never change.

She high-fived me on my way out of the appointment. “Keep doing what you’re doing.” I have a flood of literature in my medical record to read and I intend to bring it to March Madness 2026 when I talk to my Lynch Doctor again.

Damn right.

Speaking of which…

2. There’s a vaccine. It’s in phase three clinical trials as of two years ago. It’s big.

Colonoscopies every 3-5 years instead of annually. People who don’t want to get rid of their reproductive organs won’t have to, and no more trading that for uterine biopsies twice a year if someone decides to keep them. No more doctors mentioning preventative double mastectomy in passing as if that’s nothing, which has happened to me three times in the past year.

Normal risk of all cancers. Regular prevention instead of hypervigilance. A life-changing development for people who have Lynch Syndrome of all stripes.

An option not available to me until I have five years NED (No Evidence of Disease - fun fact I learned at 2025 March Madness: Remission from thyroid cancer isn’t actually a thing because in one of the types of cancer I have, risk of recurrence actually goes UP at the ten year mark) under my belt, both for thyroid cancer and the brain tumor. That’s in exactly 12 months for thyroid cancer, and 14 for the brain tumor.

I decided I’m going to go armed with literature, consistently clear brain scans and thyroid ultrasounds, and not accept no for an answer in March Madness 2026. I’m leaving with that fucking vaccine or I’ll stage a sit-in in my doctor’s office. Both are viable options at this point. Next-level nerding is actively in process.

So, yeah.

Choose violence when it’s called for. Future you will thank you for the peace.

Wild Eye Exam, Daddy Algorithm, and Proteinstravaganza

"Once you've gone through this surgery, you're going to be experiencing menopause from day one. You'll need a lot more protein to keep yourself going."

"Your brain needs time and a lot of protein to heal."

"Protein helps your thyroid meds work better and also you'll heal faster."

"I know you gained 55 pounds after your surgeries. Try increasing your protein."

"Your energy isn't coming back up after your surgeries because you're not eating enough protein."

Lather, rinse, repeat, like seven times. No joke.

Do you know how many of those seven times I listened to this advice?

None. I listened no times.

I've been told for the past four and a half years that I have to drastically increase my protein intake. By how much? I have no idea. How the hell much protein is a person even supposed to get in any given day?

Fuck if I know, but those were questions that I've asked and gotten no answers to until recently.

Seriously. I've been to three nutritionists. "Eat more protein" is the entire sentence. When I ask how much, "Play around with it and see what works?" is the response I've gotten every.single.time.

EVERY SINGLE ONE.

Even my holistic nutritionist had that answer when I asked her. "It's different for everyone. Just play around and find out what works. You'll need a lot."

HOW MUCH IS A LOT?

WHO KNOWS.

So, fun fact: I started on a GLP-1. I'm currently in week 5. It was time. I'd tried a lot to lose weight, it all messed with my guts, so it was time to try something different. Zepbound city, population me, here we come. The doctor that I met with was like "How much protein do you get in a day?"

Sigh. Here we go.

I don't know, like 30-40 grams?

"Oh. That's not nearly enough."

No shit. I didn't even ask because I expected the same answer, AND THEN she just...came out with it:

"Shoot for 80 grams a day for the next month with 100 being the ideal. That's where I want you based on your medical status."

I GOT AN ACTUAL NUMBER.

So, what did I do? What any rational person would do, truly.

I bought all of the protein powder. Bought protein bars with 25 grams of protein in them. Just bought all of the protein.

See? I do listen when I'm told medical advice. I just need to know what to do because I don't have a medical degree and I'm not a registered dietitian or a certified nutritionist, and so I don't have these facts at my disposal.

It's working. You know why? I've lost weight for the first time in four years. Finally, something that works. I didn't even have to make hugely drastic changes in my diet other than increasing my protein. My body has been in such shock that it hasn't known what to do since the surgeries, and that is what has prevented my weight loss. That comes from my PCP AND my functional medicine doctor. I'm really stoked about this, because not only am I losing weight, I'm sharper than I've been in literal years. (Going back on ritalin has certainly helped, but so has the massive amounts of protein I've been eating.)

Will the weight loss set me back to thyroid surgery levels in my vocal cord recovery? I got a resounding yes from my voice doctor a couple of weeks ago. That's both disappointing and annoying, and I've already started to notice even only losing 15 pounds. I'll be back to sounding like Marge Simpson again eventually, which means another fat injection surgery. That's disappointing, but also at the same time, he's going to help me figure out why I lose my voice entirely after I run, and also getting another injection will be easy peasy once I'm at my goal weight, just like it was the first time. If it goes as quickly as it has been, I'll be there in no time. Also, it's Dr. HotPants, and he's also monitoring me every six months for nerdy reasons. Swoon. (He's doing a study on how being on a GLP can affect fat injections in vocal cords, since the fat injected is from the abdominal cavity. HOW COOL AND NERDY IS THAT.)

Also, fun fact about me:

The algorithm diagnosed me with IBS and SIBO before any doctor did. I started having terrible digestion and all of a sudden I started getting videos across my feed about IBS and Ulcerative colitis and SIBO.

That’s literally exactly what it was that I had. (They’re still ruling out UC. I’ll know for sure in October.)

The algorithm also low-key diagnosed me with Harlequin Syndrome (which I call Channeling my Inner Two-Face), and potentially the meningioma.

Wild, amirite?

So, imagine my shock when I came across this video.

https://www.facebook.com/share/r/1Atf9dB31q/?mibextid=wwXIfr

I sent it to Rob, and you know what he did? Laughed. Laughed long and loud. You know why? That’s 100% me.

Thank goodness it’s a running joke with my PCP that the algorithm diagnoses me with stuff, because I sent this to her and was like “How do I get this testing” and she was like “I trust that you know your body, so let’s get you in to see someone.” She wasn’t able to get me into the MGH network, which is fine, so I saw a doctor in NH for it.

I went through the testing last week and her offices aren’t very soundproof because I heard her say “Holy shit” when she was going over my test results. I’ve had that happen three times, once when I was getting my first brain MRI and then they wouldn’t show me, so that was cool.

ANYWAY.

I go through this testing and let me tell you, I AM BOMBING IT. I was doing just terrible and I knew it. Also something I’ve heard multiple times, “It’s totally ok! You’re doing great. This is why we’re here.”

I can’t decide if that’s reassuring. I heard it in my vocal therapy assessment, during my SIBO testing when I almost threw up in the waiting room, and now this.

Anyway. The punch line is that I have, and likely have had it all my life, Binocular Vision Dysfunction. Essentially what that means is that my eyes don’t talk to each other. They also don’t communicate with (in either direction) my brain correctly. My neuro-optometrist literally sat me down and was like “Wow. You’ve been suffering a long time. I’m really sorry about that.”

She then explained that there are things that have clearly been going on for a long time, if not my entire lifetime, and some stuff that’s only been going on since my surgery, but it’s all treatable.

Ready for some wild stuff? Here are the symptoms:

Eye strain and fatigue: Only every damn day.

Double vision: I didn’t think this was a thing literally until this wild eye exam. I literally blurted out “WHY ARE THERE TWO OF THEM I KNOW THAT’S NOT RIGHT” like four times when I was supposed to be looking at those stupid damn dots.

Blurred vision: I thought this was just a thing and also part of being 45. Nope!

Headaches, often located behind the eyes: Where do my migraines start? One of two places - behind my left eye or on the left side of my neck.

Dizziness or balance problems: I’m literally the biggest klutz you’ll ever meet. I’ve broken things from tripping on stuff. Like on my body. Also inanimate objects.

Motion sickness: I -cannot- be a passenger in a car unless I’m forced to be because I can’t drive. Then if I don’t sleep, I’m miserable after five minutes. I seriously considered asking to not be put out for my annual colonoscopies so that I can drive home from them. I won't, because propofol is amazing and who on earth wouldn't want that nap, but I've strongly considered it.

Reading difficulties: Yup. I haven’t read a single book since my surgery, but not for lack of desire to read - I just can’t.

Poor depth perception: YUP.

Eye pain, especially when focusing: YUP.

Sensitivity to light: Especially bad with migraines, but low key all the time

Neck pain and stiffness, shoulder pain: At several points of my life, I’ve needed assistance getting out of bed because this has been so bad.

Difficulty driving at night: Check.

Anxiety and stress: Checkity check.

Clumsiness and coordination problems: All of the checks.

I.HAVE.EVERY.SINGLE.SYMPTOM.

So! I start vision therapy in two hours. The first step is to break down the things I’ve been doing behaviorally to accommodate it, which is terrifying and sounds painful, but is also entirely necessary. At some point, I think it’s likely that I’m going to get some prescription prism lenses, but we’ll see what that means and what it looks like. First, I’m to do eight sessions and then check progress.

I'm now at the stage where I'm starting to feel a little validated without feeling rage. That feels nice. When it comes to medical stuff, I usually can't feel validated without the rage.

We'll see what this next thing brings!

The Click

My healing over the past three and a half years has not at all been linear. I knew to expect that because it rarely is, but also because both my neurosurgeon and my neuro-oncologist have told me so about a billion times. I left my appointments in March annoyed that I’d heard that again.

I get it and would like to move on with my life now, please and thank you.

Anyway. I’ll go through short periods of time when I’m doing great. Then stretches that I’m feeling just ok and then stretches of time that feel like they last forever and I’m doing awful and then…you get the drift. The bad times are getting shorter and shorter, and the time where I’m feeling ok, what I’d consider my baseline - not fantastic, but also not terrible either - is getting longer. The “holy crap do I feel fantastic” times are always short and fleeting, and I’ve become ok with that, actually.

The one part of my healing I’ve never been able to get under control is my sleep. I have some theories about why it’s so bad and also why having bad sleep is so distressing.

My entire life I’ve been a legendary sleeper. My ability to sleep through literally anything up to and including a train going through the house is the longest running joke in my marriage. I would sleep through the night, rarely wake up unless I was sick or randomly had to pee (which, no joke, literally happened maybe once a year), but once I was out, I was OUT. 

Then I had a hysterectomy. Then I had a thyroidectomy. Anyone who has ever had a medical procedure that messes with your hormones, or has gone through puberty or perimenopause or menopause, knows that when you hit those phases of your life, your sleep changes. That didn’t happen to me when I went through puberty that I can remember, so I figured that being shoved into surgical menopause wouldn’t be that big a deal.

At first it wasn’t. I was still recovering from the surgery and so I slept a lot. A LOT. I would say that the daily naps started after the hysterectomy and then just kept going from there. But during the night, I’d have super weird dreams, I’d toss and turn while asleep, but not wake up unless I had a pain or something, and my sleep was not super interrupted. I started to wake up more at night once I was fully recovered, but I wouldn’t be awake for more than a couple of minutes before I went right back to sleep.

Then I had my thyroid out. I started at a normal dose of thyroid hormone, and then my endocrinologist kicked it up several notches when I had to start suppressing my pituitary gland. Then I started seeing a new endocrinologist and he kicked it up even more. Then suddenly I wasn’t sleeping through the night at all anymore. This is one of those things where the shift was so sudden and alarming that I talked about it every time I was in front of a doctor. I’ll give you three guesses about what I was even offered to help. (If you’re wondering whether I would have taken a sleeping pill, the answer would have been yes. That’s how bad it was.)

If you guessed nothing, nothing, and more nothing, you’re right.

Fix your sleep hygiene. 

Don’t eat within the two hours before bed.

Don’t use screens before bed.

Stop napping.

Cool. Thanks. Napping was the only way for me to get through my day without falling asleep on a client, so that’s terrifying.

My favorite and most recent?

Don’t go to bed until you’re tired.

Here’s the problem. I don’t drift off to sleep. I have an on and an off switch. I am awake, and then I am asleep, and then I am awake again. That’s how my circadian rhythm works and has worked my entire life. So if I wait until I’m tired to go to bed, I will never again sleep in my bed because I will pass out on my couch and stay there until I wake up, which also happens a lot. That’s to say nothing of the idea that sometimes I don’t get tired until 2am. Sometimes I get tired at 8. Sometimes I have to force myself to sleep. And if I’m not home while I’m sleeping, forget it. Medical week, I averaged three hours a night. The night before my vocal surgery, I went to sleep at midnight and I was up at 2am doing diamond art, watching South Park (did you know that Comedy Central plays reruns of South Park through the night? Fun fact I learned!), waiting until a reasonable time to get in the shower. (I waited until 3:30.)

What has this resulted in? I haven’t had multiple good nights of sleep in a row in four and a half years. Like, not even two nights in a row. I’ll have the random legendary one-off, but that’s literally it. It’s been this thorn in my side the whole time.

I’ve had my hormone levels tested more times than I can count. That’s what I’ve been told is the problem this entire time. It’s just my hormones.

You know when the closest i came to getting normal sleep, hilariously enough? When I started on Ritalin. It calmed my nervous system and helped me operate in the world more regulated.

The only person who caught it or thought it might not be my hormones was my psychiatrist. “Your sleep normalized a little after going on a stimulant? That’s weird and not really supposed to happen. Your nervous system is not doing so great. How’s your stress?” We meet once a month and our entire conversation centers around my stress level and what I’m doing to keep it in check.

Nothing. The answer is always nothing.

I went off of Ritalin about four months ago because I started another medication that had stimulants and as it turns out, those two meds together gave me panic attacks.

My sleep got a million times worse. I tried the teeniest tiniest sliver of Ritalin, and all of it was a no.

But then I started seeing a functional medicine doctor. She put me on all of these supplements, and at first, nothing. Then I started to feel a little better. My head started to get back on straight. I started wanting to be more active. Then I started to be able to stay fully awake every day. Then my sleep started to get better. I wasn’t necessarily sleeping through the night at all, but my time awake was shorter and my sleep was deeper.

Then I started running again.

Then my head cleared, I felt the click that I feel when I’ve turned an huge corner with my healing. As a part of this, I made several monumentally huge decisions about my life over the last few weeks, the last and biggest this last Sunday. (That’s all I’m saying about this at the moment.)

I’ve gone to sleep at a totally normal time, slept through the night without waking, and gotten up at a shockingly normal time four nights in a row. I no longer feel trapped in my own head, or anywhere else for that matter. I can breathe.

I don’t expect this to continue. I expect that as these huge choices unfold, things are going to get stressful, but this time, I know there will be an end to it. There’s about to be a lot of uncertainty, but I can certainly tolerate that better than I could previously, so I think that won’t be a huge deal.

Regardless, I’ll take whatever wins I can get.

The Magic of Silence and the Magical "How Dare You"

Friends, I switched therapists. I love my old therapist and always will - she shepherded me through some of the most difficult times of my life. And, I needed a new perspective.

One of my friends asked me recently what makes good therapy, and I've recently been able to put words to it after two sessions with this new person:

It's "OMG THIS PERSON IS FANTASTIC" combined with a healthy dose of "How dare you".

This woman has now broken me open twice, and I'm going to put myself through this weekly until my anxiety becomes manageable and I no longer want to blow out of my own business. You know how she's doing it? By just fucking...sitting there. She said maybe ten words in our entire session a few days ago. What is that sorcery?

Making progress feels nice in this area, and I already feel it. The knots that have perpetually been in my stomach for almost 45 years feel like they're starting to undo themselves. I felt it driving home after my therapy appointment. It was pretty neat.

The progress doesn't come from the "OMG THIS PERSON IS FANTASTIC" part, even though that's an essential part of the dynamic. It actually comes from the "How dare you" part and then coming back again and again until the "How dare you" becomes manageable enough for you to work with it.

I find it unendingly hilarious that she doesn't talk. My old therapist talked more than she did (but also not so much that it was a problem - she interrupted my anxious rambling a lot, which was also sorcery in itself), and that also suited me just fine. I'm finding it a little unsettling that my new person talks so little, but I also understand deep in my bones that this woman's use of silence is the stuff that dreams are made of. I'll say something, then she'll just...sit there. Then out loud, I'll ask myself the question that she was invariably going to ask and I'll work through it. When she does speak, she asks pointed questions. Like "Why did you just apologize for that?" or "Why do you recoil at the idea of calling your business your baby? Why did you just say 'ew' to that? I did not expect that reaction."

Neither did I, Fabulous New Therapist, but there it was. There was the "how dare you" part.

She's also having me confront my medical trauma head-on. She put an idea out there AT OUR INTAKE and I looked at her and was like "hate that, hate this, and hate you a little bit, if I'm being honest."

Her response? "Yeah, that tracks."

She has me doing exposure therapy on top of all of the other shit we're doing. EXPOSURE THERAPY. I HATE IT.

For those of you unfamiliar with exposure therapy, you work to find out what your triggers are and work through them, one by one by one, by exposing yourself to them. All of my smaller anxiety/trauma triggers are more manageable, so we're starting with a big one because that's the one that I identified and I'm clearly a masochist, and it's got the most urgent need to be addressed.

I'm to go down to Boston for non-medical reasons as frequently as possible, ideally going down to Boston for no purpose whatsoever.

The first weekend of it, two weeks ago, I took some work down and sat at Caffe Nero (one of the like fifteen in Boston...I have a hunch that to some degree, I'm going to keep them in business by buying their chicken salad croissants on the regular) and just sat there. I expected it to go better than it did, quite frankly. I've been invalidating myself about how bad my anxiety is about going down to Boston. It's not about the drive, because I actually love it. It's about the idea that almost every time I go down there, I get poked or cut open or knocked out or some combination of the three or other Very Unpleasant Experiences. It's not helpful that the very first time I drove in Boston, it was for an emergent CT scan and MRI because I'd had a headache for eight days and my neuro team freaked out. It also doesn't help that the second time I drove down to Boston was to get myself to my emergency cerebral angiogram, and the third time was to get myself checked into a hotel because I was having brain surgery the next day. This is what I'm talking about - it's The Problem. What has been happening is as a result of the trauma reaction I have when I'm in Boston, I do things like barely sleep for days before I have to go down there, no matter what the medical appointment. If I'm down there for multiple days, I sleep VERY little. For instance, during medical week, I averaged 3-4 hours of sleep per night. The night before my vocal surgery, I slept two hours. Granted, I had the nap to end all naps the next day, and then I proceeded to sleep an extraordinary amount in the ensuing days, but that's not the point. I want to be able to not freak out.

Anyway. So I'm sitting in Caffe Nero, sweating and shaking uncontrollably for no reason, and I recognize that that's happening but don't connect the dots until I get in my car to go home and immediately calm down.

I thought it was because it was cold in the cafe. SNORT. Nope. My car was colder and I shivered not one bit.

Then last week, I was flying out and back from Boston, and I did ok with that except entering the wrong way into the parking garage of Logan Airport, which is the very definition of hellish. I figured it out and then was able to get my anxious energy out by running to my gate and walking in general so fast that I was getting a workout. I was able to be relaxed when it came time to sit in my seat on the plane. It was great and possibly the first time I've ever felt relaxed while also existing in Boston.

This week, we're going to Boston Pride. I feel excited about it because I think it's going to be SUPER fun, but I can also feel those familiar nerves bubbling. It'll get easier as I have positive experiences in Boston; it's already starting to, so I just have to keep trucking, even when I swear about it.

And I will swear about it. A lot. And frequently.