The other side of the hinge now; or, origin story

I keep thinking to myself that I feel like a baby, new. Not only is that one of the most hackneyed cliches in existence, but I also think that by all accounts I had a pretty horrible time as one, so I think I probably don’t feel like a baby. At least not a me-baby.

I’ve been told that when I wasn’t screaming, I was vomiting, or running a high fever, or all three, and I was covered in a rash. I was always sick and had terrible fevers, and I truly don’t know how many times I “had to be put in an oxygen tent” but I understood it was a big deal when I would overhear my grandmother telling people about it. I see pictures of myself from around the time my mother got her act together and showed up again and it was probably the worst. I looked like a six-year-old tiny Lydia Deetz, pallid with dark circles under my eyes.

I told myself I was going to take a break from whinging about my health for a while, and I’ve made somewhat good on that, but things are getting…a little weird. I’ve had tinnitus and vertigo since high school (twenty years) and it’s suddenly evaporated. I was holding my breath waiting for it to come back, but it’s been a couple of weeks now. Normally cessation for me is a couple of hours. Sometimes people would be talking and my hearing would just cut out and be replaced by the sounds you hear in a hearing test. I’d just watch their lips move and nod. Or guess.

“Yes, I would like it in the butt,” I would reply, my whole head going BEEEEEEEEEEEP HUUUUUM RIIIING.


“Wait. You feel like you’re in a rut? Sorry, keep going.”

Now I am an explorer on an exploration mission that is always christened, “What is making that noise, I don’t think it’s coming from inside my head.” [Spoiler: it is the refrigerator.]

Sometimes I like to play “DID YOU KNOW?”

Me: DID YOU KNOW the porch light makes a really loud buzzing noise?

P: Yes.

Me: DID YOU KNOW the dining room chandelier makes a humming noise?

P: Yes.

Me: DID YOU KNOW the toilet in the guest–


No one else likes this game. Sometimes it makes me cry a little, like in the case of the porch light, but not really in a bad way and I get over it quickly.

And now there’s the wiggling and stretching. I will be stuck in a waiting room and if I’m left for too long I start moving. I tell myself I want to stretch, and I do, but then it becomes a test. What if I do this? Does that still not hurt? What about my neck? Okay, neck’s okay. Shoulder joints are always bad, soo…nope, they’re like butter. By the time I am called I am practically rolling around on the floor, looking like a cat stoned out of its mind on the nip. “Ha ha, I was just testing the back of my knee (IS THE NURSE BUYING THIS??).”

I test myself in bed, too. I had that nasty nine month patch where my shoulder was just a little out of joint, causing constant pain. I didn’t realize until it was over that I was kind of rocking Bob Dole arm since it hurt so bad to move it. I had to get used to moving my arm again. So, just having this fixed, I felt much freer, but sleep was a strategic exercise in trying to minimize pain and praying that I would stay asleep for more then four hours at a time. I used to have very specific positions I could sleep in (sometimes) and if I was lucky I would not wake up with both of my hands dead. Now I sleep ON my hands sometimes, for kicks.

“I am sleeping on you, hand,” I say. “Just try something.”

“While this is probably not the best for our circulation, I am aware that you are sleeping on me because I am not wracked with nerve pain/burning from being dead asleep.”

“Okay see you tomorrow, when I will use you to hold up a book or do a project for more than three minutes without a break.”

I looked out the window on Sunday and realized I could read the street sign across the street. I can write words sequentially and without a million typos. I can write like it’s NBD, it’s just flowing out of me like diarrhea. Which is ironic, because what is NOT flowing out of me is diarrhea. HA. Sorry…I am not sorry.

I’m not wracked with anxiety or unexplained black moods. On nights that I slept deeply enough to dream, I would dream about break-ins, being held hostage, being tortured. I would snap awake at the slightest sound coming from outside. Slowly I am retraining myself that I don’t need to take more than normal precautions, that this house and neighborhood are normal and safe. I knew the fears I’ve had since moving into this house were irrational, but now I really believe it.

There’s actually more little things that have improved, like my nails don’t peel down to the beds anymore. No more pica. A year ago I was with a friend, putting my hair into a ponytail, when a clump of it just came out in my hand. A significant one, like a piece of fettuccine, like my weave was coming out. I was kind of embarrassed, but he was extremely unsettled. “I haven’t seen that since my wife had cancer,” he said.

“I’m fine. That was weird,” I said. I knew I couldn’t stop it so I just accepted it.

I had decent patches as a kid when I wasn’t anxious for no reason, and even as an adult where I would muscle myself into getting things done. But I always felt like something was missing, like normal was just out of sight somehow. This was just a crazy notion from hunchport but I didn’t think there was actually anything off with my brain. I tried anti-anxiety and depression meds when I was younger and nothing seemed to really help. I thought about my family history of thyroid issues, and strokes, and how they took one of my grandmother’s inner ears to “fix” her vertigo, and I thought I was just walking that path.

I think the weird exclamation point on all this that made me want to write about it again happened last night. I was in the kitchen and, naturally, the subject of head injuries and how much they bleed came up. I mentioned what was probably by biggest head injury, which was when one of those 300 pound dart machines you find in bars fell on my head and made a split in the skin. It didn’t bleed as expected, I think maybe because the machine was so heavy it sort of split the skin and then compressed the open vessels against my skull somehow? I was only about 25% Carrie on prom night until they started sewing me up in the ER and then it went full Carrie, blood running down my face.

“I was your age,” I told Strudel.

“WHOA!” she said.

“Your mom has a huge scar on her head, you should feel it,” P. said.

This scar has been with me since childhood, huge and raised. My stylist comments on it every couple of years or so, since it’s so obvious once my hair’s parted. She always asks if it’s recent. Occasionally it starts hurting again, especially in the presence of orcs. He prodded my head to show the kid, since I was up to my wrists in lemon juice.

“I can’t find it,” P. said.

“Hang on,” I said, rinsing. Then I couldn’t find it. It was flat. I immediately checked one of my other ancient scars, the infamous hole in the roof of my mouth. Still holey but no longer painful! I keep prodding it with my tongue, like my rolling around in waiting rooms. Does it still not hurt? HOW ABOUT NOW? Sometimes I like to sneak up on it when it’s not paying attention.


“Do you, like, need something, man,” my hole says. It’s the Dude now.

Now I have a new hole: a lack of all this shit I’ve been wrestling with for my whole life. What do I do with myself now? I feel like I’ve been playing on the hard setting for 36 years and someone just unlocked God mode. I don’t feel manic, though, just calm. Steady. Productive. Trying to figure out who the fuck I am and what I want. Everyday life is now super easy and not torture or battling back one symptom or another, but I am confused about the big picture. My goals actually seem attainable now, like doing a lot of writing and having my own business someday.

P. and I talked about it the other night and he was very, very honest with me and it made me happy but it almost made my heart break a little.

“Now that you’re feeling so much better, there’s a part of me that’s afraid you’ll decide you don’t need any of us and blow out of here,” he said.

I don’t think so. It’s no fun to cook for myself.

TL;DR: I have had celiac-induced malnutrition my whole life, it’s had an impact on things. Currently I cannot eat wheat, dairy, or corn, and my intestines are mostly a waterslide so this shit 100% does not apply to me. I am going to keep an eye on myself, keep taking vitamins and keep getting my thyroid tested.

20 thoughts on “The other side of the hinge now; or, origin story

  1. Oh my God. This is incredible. When you put it all together like that, I am amazed you have made it this far without dying of something. And for what it is worth, write all you want about your medical shit. It is fascinating.

  2. I am so happy for you! I second the first commentor-continue writing about your medical shit. You inspired me to do an elimination diet that helped me identify some big agitators (delicious wheat and dairy). This is what blogging is for-sharing life experiences.

  3. Dorrie: Thanks! I am a tuffy, but I was getting weaker. Thank god for all the crackpottery on the internet that inspired me to try lots of things and ask for various tests.

    Kate: Thanks, I am happy too! I am so sorry you have agitators in your life as well, but it’s good to know.

    FUNNY STORY I was reading a list ofa last suppers on death row the other night and I was like “Oh man if I was on death row I could have ‘real’ chicken and waffles with no consequences” and then I was like “waitaminute there is something wrong with my logic here…” I am lame. But my mouth was watering.

  4. Oh, I am so happy for you.

    I had a similar epiphany re: realizing exercising was not actually the hardest, most impossible thing ever, as it had been for me for the past forever many years, and then I couldn’t. stop. talking about it because I just kept being more and more amazed that I could, e.g., run (sloooowly) without wanting to take a nap a quarter-mile in. I will never get tired of hearing you write about it.

  5. Jesus. I am so glad you’ve found your way here, but on the other hand, I am still so sad for little-SJ, and the 30-odd years of feeling like crap. Please live to be 120 so you can catch up.

  6. It’s strange to go through the day as if someone has flipped a switch for you, isn’t it? Suddenly you have mental clarity and the ability to function like a mostly normal human. Bananas.

  7. I am not an animooooooo

    But seriously yes.

    I have read about people who don’t figure this stuff out till they’re 80, so better medium page than super late I guess?

  8. It’s odd isn’t it, when you realise that so many other people have been walking around this whole time without a hundredweight of bricks on their head. Never sure whether to be sad for us or happy for them.

  9. Stoked for you! Went through a similar epiphany last year with regard to muscularskeletal pain, and physio, and learning to move without constant knee/calf/foot pain. And I was a complete bore for months telling everyone how excited I was about it! Maybe the backlash against gluten-free eating has been too thorough – some people *do* need it.

  10. SJ,

    I think back to the 30+ years of daily headaches, sinus problems, bloating, seasonal allergies, and finally weeks straight of diarrhea and I wonder why no one thought to check diet. My life changed and it made it easy to skip the wheat (after 6 years I don’t even think about fried chicken but it was tough those first few years). Now I know I can’t have corn and it a tough mental space again but nice to feel better.

    As for the slick intestines, are you taking fiber? It makes a huge difference to me since I am not eating starch, more or less. I use these:

    No sugar and they are just pills you can take. Granted you have to take a bunch more (I take 6 per meal) but everything stays solid.

    Very glad you are finding things out.

  11. Karri, Thanks! I am doing well on the fiber front, I think. I’m getting a lot of veggies and other high-fiber foods. Things are finally working correctly for the first time I can remember and at this point I don’t think I need to tip the scales. I am glad to read a comment like yours, it makes me happy for you and makes me feel saner. I read a lot of comments elsewhere on the internet about how this is all bullshit and we are fooling ourselves with diet–it’s nice to know we’re not alone and we have found a way to feel better.

    Helen–you’re touching on the exact thing I was just talking about. The backlash. I don’t get why people care, but I am sure they will move on soon. I think they’re “coming” from the FODMAPs people next…or maybe the fructose intolerant. Sigh.

    Krumpy: Thanks!! I owe you an email v. soon!!

    Everyone else, thanks for commenting and I am glad I have not been boring completely everyone. Believe it or not, I do think of you all. Thanks for sharing your own difficulties with me for the last few months.

  12. Holy shit. I am so glad you found the answer but so sorry for all those years of feeling like utter hell! So scary. Yes! I am with Mir, 120 here you come, dagnabbit.

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