Putting the Pieces Together

I’m going to try to write this out without boiling over with rage. It’ll be good practice. I had allergy testing last week in an endeavor to make sure that whatever the fuck is going on with my gut isn't an allergy. (Spoiler alert: It's not.)

I just was talking to Rob about the prescription that was the result of yesterday’s appointment and he was like “I guess we should go to Costco and get a vat of this stuff.”

Me: “It’s a prescription.”

Rob: “They have prescriptions at Costco.” (Picture him saying it all haughty. It was hilarious.)

ANYWAY.

I went to an allergist last week for an appointment for which I waited five entire months. That was annoying but I’ve been here before, so I was ok waiting if it meant I’d leave with answers. In the meantime, I had a ton of gastric symptoms, and on the Thursday of Boston Medical Week, I finally had an acute episode begin and continue in a doctor’s office. She almost called an ambulance on me, but it subsided enough for me to function while I was there, so she didn’t.

I was hoping to get answers at this allergy appointment, and boy howdy did I.

You know what I’m allergic to? Get a load of this shit.

Nothing.

I’m allergic to nothing.

No foods, no perennial allergies, no seasonal allergies.

Then the question became: Then why am I so activated all the time? Why does it feel like my insides are actively trying to yeet themselves, or that I’m on the verge of sneezing literally 100% of the time, or that I have this rash on my face and arms all the time? Or my nervous system never, ever rests, ever? I’m not that stressed and I’m constantly having a stress response that is so far over and above what I should be feeling physically. Why is this happening? AND WHY AM I STILL GETTING MIGRAINES, and why have I been diagnosed with asthma twice, to the point where I was given an inhaler and other prescriptions that collected dust for so long that I threw them way eventually because I didn't actually need them?

It should be noted that my doctor named all of those things. Just rattled them off. Not me, and not as questions - as symptoms. He also added the cherry on top of “you’ve probably had a million sinus infections and been put on antibiotics your whole life, yeah?” If you’re wondering, this was my boiling point. I was getting visibly angry, which he noticed, and quickly veered to "Yeah, you get the point. Here's what we do about it."

Him telling me about this problem was literally the most glass-shattering moment I’ve ever had in my entire life. Five days later, ESPECIALLY BECAUSE THE MEDS WORK SO UNBELIEVABLY WELL, I'm still messed up about it.

Every single one of these symptoms that we discussed is connected as a neurological response.

He told me that it starts to ramp up at about 45, but if you’re neurodivergent, or you have some kind of other neurological issue, “like I don’t know, a brain tumor maybe?” (And then we had a good chuckle) it starts much earlier, and we have to stop the neurological reaction. Basically I’m not allergic to anything, but my brain is sending signals that I’m deeply allergic to all things, particularly my gut, so my body is reacting accordingly. My parasympathetic nervous system has constantly been activated, which sends my whole body into upheaval.

Basically all of these symptoms started to ramp up when I was in my very early 20s. You know what this man had the audacity to say to me?  “Well, now we probably know when your brain tumor started communicating its existence.” 

My response was the only one I had at my disposal in that moment:

“Please, Doctor. It’s Marvin.” (He cracked up that I named it.)

So, there’s an answer at the end of this question of "What do we do with this information", which is what keeps me from burning everything to the ground.

There’s a nasal spray. I take it anywhere from 1-4 times a day (It's looking like 3 is my magic number). It’s not a steroid - it blocks acetylcholine, which then allows the parasympathetic nervous system to stop misfiring at every small thing. You know what's happened since I started taking it?

1. Better sleep. (I thought I was already sleeping pretty decently. I was not.)

2. I have slowed WAAAAAY down.

3. My anxiety has nearly disappeared. Does my brain wander and chew on lots of things? Yes, but that's probably the least annoying symptom of my ADHD, so I'll take it.

4. I no longer have a constantly runny nose.

5. My rosacea? DISAPPEARED.

6. I can breathe better.

7. I have more stamina. I'm not exhausted at the end of my workday.

8. I'm not constantly on the verge of sneezing.

9. Existential dread? Normal amounts.

10. Stress? Minimal.

My (proverbial) gut has been telling me for YEARS that all of these weird symptoms are not right and there's something that connects all of them. I've been told by doctors to "stop chasing symptoms" and "here's another cream/gel/something that probably won't work" (just got another TWO during medical week!) and "you're a zebra. That's why you have these weird symptoms. We'll find answers, but there's no one silver bullet here."

In these instances, being right is not satisfying. It seems like it should be, but it's not. This time, I'm MARGINALLY more understanding because the symptoms that make up what's happening (I don't even want to call it a diagnosis - I don't think it actually is one) are weird to piece together, and I could see how they'd be perceived as not being connected. I ALMOST get it. I'll understand it all the way eventually once I'm able to chew on it more. But also, understanding it more will not allow for me to have less rage. I'm still BIG MAD and will be probably forever and I'm at a level of acceptance for that that's comfortable at this point.

At least now I can vent my rage through exercising because I now feel better enough to do that.

Here's the thing about me.

Now that I know the experience of medical gaslighting and also the opposite, feeling heard and feeling like I am a part of my medical team with at least some expertise, there's no way I'll accept the former ever again in my life, ever.

What does that mean?

It means the second I get even a whiff of dismissal from a medical professional, they are F I R E D.

I don't give a shit if they were having an off day. I don't give a shit if what I was saying about what I was experiencing just didn't penetrate. If I say I think something is wrong and a medical professional doesn't listen and at least consider it a part of the entire clinical picture, they will immediately cease to be a medical professional on my team. Full stop.

I give no second chances in this regard because back when I did, the results were catastrophic. As I was going through all of the medical stuff in 2021, that was the one and only promise I made to myself: My concerns will never, ever be ignored again.

My neurosurgeon - she's one of my favorite humans. I literally put my life and my brain in her hands and she delivered, 100%. If I ever felt dismissed by her, we'd be DONE. My PCP - she's amazing. I was going to get legal consult about being able to keep her as a PCP when MGH said I had to switch. That's how good she is. She is also no exception to this "no second chances" rule. I could go through all of my medical team and say equally glowing things. They would also be fired immediately if they ever dismissed a concern that I had.

So when I went to my follow-up ortho appointment for my foot last week and I said, "It often still hurts as badly as when I broke it and I think something more significant is happening," and she shrugged and said "your x-ray shows that you're healing as you should" and sent me on my way promising a PT referral that never came, I knew that was the beginning of the end.

I was up a lot of the night last night. I went to bed not being able to put weight on my foot - like, couldn't even wear socks. Couldn't let my blanket be on top of my foot. This had been happening intermittently and in an escalating fashion for the past week or two. We're seven weeks out from my break. I should be able to put weight on my foot. So I called my ortho doctor.

They could fit me in on March 5.

But also, I knew something needed to be done. The amount of pain I'm experiencing is not supposed to be happening, so I went to MGH urgent care.

They found a second break right where my most severe pain is. The ligament has also likely torn off of the bone. I might need surgery, but the doctor that I saw is going to recommend an MRI when I get into my new ortho doctor just to make sure.

But everything is fine, right?! Of course it is! I'm 45 and rolled my foot and broke it in one place and sprained it in two others - it's going to heal slower. I just need to give it time and do some PT.

Except that's not what happened.

I broke my foot, I broke a part of my ankle, and sprained another part of my foot when I rolled it and have been in near constant pain of varying degrees ever since.

What I'm most astounded by is the speed with which I made this decision. I was becoming increasingly frustrated because it took me like three tries just to get through to a human, and then to be told that I couldn't see my doctor for over a month? Nope. Immediately no.

So for now, I'm back in the stupid boot.

I'd be mad but my foot and ankle feel so much better that it's hard to be mad about that. So for now I just shuffle around and take one step at a time.

Very gingerly.

And waiting until my feet regain feeling after sitting criss cross applesauce.

Finding Humor

Probably the toughest part of my recovery is officially underway - breaking through the boulder of denial about the fact that I have a brain injury and actually saying it out loud and feeling the grief. I'm told acceptance comes at some point.

I've known since before my surgery that I would have a brain injury. In fact, I already had brain injuries because Marvin was causing quite a bit of inflammation and damage. For how long? Who knows. Years. Maybe (probably) decades. My neuro team all told me all of this. After my surgery, it's like I didn't believe them or something. I became so deeply entrenched in denial that there was nothing that was going to break me out of it. It was helping me return to my old self and it would have to be pried out of my cold, dead hands.

What I'd never heard anyone say out loud until I read this book that I'm reading now: The old me? She's gone, and she's not coming back. I don't think I would have heard it if someone had tried to say it to me sooner. In fact, I know that people have told me this and I haven't listened. I wasn't ready to hear it.

Something really magical has happened since I heard the author utter that sentence. At first, I was really, really sad about it. Like, big crying in my car type of sad. Like, randomly sitting at my desk and crying a little bit without understanding why type of crying. I've cried listening to and processing this book more times in the past week than I have in total over the past four years. But then once I was able to sit with the grief and give it some room for a bit, the relief I felt...I've never felt anything like it.

I could stop pressuring myself to get back to normal.

I could stop shaming myself for all of the things I can no longer do.

I could finally meet myself where I am instead of this imaginary, unattainable goal of getting back to where I was before my surgery.

I was free. Am free.

You know what happened after that? I stopped hiding it.

Two of my best friends and most trusted colleagues? I said it out loud to them. We talked about it. they validated, because it's really fucking hard. I cried A LOT about it. They listened. We made a plans that are manageable and centered around me asking for help, even when I don't know what I need. (woof. I'm feeling emotional even writing that. WHY AM I A CRIER ALL OF A SUDDEN. HATE THAT A WHOLE LOT.)

It's like this snowball that was rolling down a hill, and it's just going to get bigger. I am making broader plans to train clinicians on how to work with people who have brain injuries, because hot take: None of us has any fucking clue. Literally none. I want to, when I'm ready (NOT NOW OR EVEN IN THE NEXT YEAR), start a brain injury support group, because I know without a doubt that I'm not alone. I'm finding hope that I have been missing, and it's helping me find purpose again. 

First item on the agenda, though? I'm going to connect with the author of this book because she needs to know how much she's helping people. She's located in Maine. I'd literally drive wherever she is and take her out to dinner if I ever get that opportunity. That's how thankful I am about this.

I have to stop making fun of her first.

This is how I know I'm not at acceptance yet. This woman's book is lovely. Absolutely lovely. It's poignant, you can visualize what her grief process must look like, and she just does such an amazing job of discussing her lived experience as a brain injury survivor.

She described things that have helped her, like:

Starting a gratitude journal.

Writing affirmations, framing them, and hanging them around her house, all of which have to do with what she is capable of now.

Doing a portfolio of her accomplishments since her brain injury.

Finding the silver lining (my favorite of hers was when she found purpose in her family again when she realized that because she has a blunted sense of smell, she can cut onions without crying. Super sweet.)

Regaining the sense of self now that the old her is gone, and how that can help a person get back out into the world.

I could literally name like ten more. Do you know how many times I ripped on these ideas? As often as I possibly could. Intellectually, I know they're fantastic ideas. The part of me that is still grieving wants to hear literally none of it.

So I'll use humor to get me through, but there are several of her suggestions that I'm going to try while I do. Will all of them work? Of course not (ESPECIALLY THE SILVER LININGS ONE BECAUSE I HATE SILVER LININGS WITH THE FIRE OF A NOVA AND THANK GOODNESS MY HATRED OF THEM WAS NOT EVICTED WITH MARVIN BECAUSE THEY'RE BULLSHIT), but I want to try.

I finally want to try.

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.