It’s a new dawn, it’s a new day

It is fall, and I’ve been sitting in my window eating a breakfast of left over pot roast and reading.

A truck passed by and the smell of spent fuel took me to Paris, to the place that will always feel like home.

This year has extracted so much fire from me. I needed that fire to survive, to get out of bed and get answers. That fire got me through so many situations that would have undone me otherwise.

But I didn’t survive just so I could be angry all the time. Or negative. I might need it again at some point. But for now it’s time to retire it and return to a softer place.

Cooler temperatures mean that I throw dinners again. And plan outfits without worry that I’ll be drenched with sweat. And start discovering my next iteration. I just need to shake the fear out and let my lungs expand with grace so that the words I say may be of use.

Steady, as she goes

To contextualize what I’ve been battling these past few months, I guess you’d have to know how bad things can get. Neglect, illness, physical and mental deterioration, and suicide attempts.

I’m an adult autistic who wants to live independently. I’m walking on a high wire without a safety net. I do it well enough to make most people around me think I’m capable and just a little lazy and ditzy when really it takes all my faculties to operate at this level.

Having anemia and depression and autistic burnout on top of other physical health issues is enough for anyone to find overwhelming. I’ve had to advocate for myself over and over, sometimes pushing personal relationships. Sometimes just posting blood test results on Facebook and crowdsourcing for solutions.

I’ve been doing this on Medicaid. It’s been a full time job taking care of myself. Many times the examinations have been extremely painful even after the medical professionals claimed they wouldn’t be. I faced them alone. I came home alone. I had to feed myself, dress myself, shower, etc. That on top of memory loss, skill loss, financial strains, and trying to maintain friendships only made life harder.

But to the medical establishment my problems weren’t a big deal. They fundamentally don’t understand autism and how bad things can get. They don’t know what it takes to function at the level of neurotypicals.

I look normal. I speak well. I make eye contact. I’m intelligent. But that doesn’t mean I can take care of myself. I don’t know who could have helped. I don’t think the system has people to help people like me. But it should. There’s a huge gap in care.

During this time, I’ve gone without food, without medicine. I’ve burned myself. I’ve forgotten to take out tampons, diva cups. I’ve lost things. Dates have passed. I’ve broken down more times than I can count.

But I also gave a talk to Amazon. I cut Emily’s hair. I helped J through his legal issues. And Mikey with his dad’s eulogy. Taught people about autism and Covid. Taught myself about enough medical issues to be dangerous. Survived in NYC.

It’s amazing how much of me I lost in the past six months. It should be just as amazing that I came out the other end.

If what I’m learning could help others have more compassionate care and a kinder world, I’ll do whatever it takes to make that happen. Maybe that’s apparently what I’m here for this time around. That’s what gets me through when things get too hard and feel like just too much.

Because otherwise it’s just me on my bed alone, trying not to cry, wondering what the hell I’m going to do with the rest of my life. Intuitively it doesn’t feel like that’s the case.

One foot in front of the other

It’s October 2018 and I’m cold, laying on a futon in Crown Heights, trying to go to sleep. I’m uncomfortable because the futon has yet to be built that is amazing to sleep on. Futons fails as sofas and as beds. They’re sort of mediocre at everything but they get the job done.

But it’s not even the futon. It’s my feet. They’re freezing. I do the internal two-step of, “Fix the problem,” and “You can tough it out,” that I do when I’m exhausted.

And then this voice comes in that isn’t mine:

“Take care of yourself, dummy! Survive, goddamnit!”

It was so convincing I only needed to be told once. I put socks on. I fell asleep.

The voice visited me for the first time when I was in seventh grade. Life was no bueno. And I was an avid atheist. I was ruminating in English class about whatever the mean girls had said or done that day and the voice just said, “Don’t worry about what they think.”

It was pretty remarkable.

Now, the voice has never said anything harmful. And it’s only happened a handful of times that I can definitely recognize.

I miss it right now. I’m doing the things to get better. I sometimes forget that my job right now is to let my brain heal and I think I’m being lazy or wasting time. But these things you can’t force.

It’s just not so easy to take things slow all the time when I want to be doing more just for the sake of doing. If I did more right now, I might burn out and be incapable over the long term. I have to recover before I can do better. With intention.

The voice, whether it is divine inspiration or just the part of me that is my internal parent, I don’t know. There are lots of things I might never have answers to. Humility is hard for a nerd to grapple with.

Today I watched a Sapolsky lecture on depression.

I learned about prolactin, heme oxygenase, glucocorticoids, and Substance P. Stress is the enemy. Stress leads to inflammation, rashes (currently covered in one), lowered immunity, aging, and neurodegeneration. It’s a vicious circle.

So many lessons to learn so I can teach them to others. It’s time for a nap.

Scenes before the Italian restaurant

“It’s going to be uncomfortable.”

I’ve been hearing that a lot lately. Uncomfortable is sweating on a train platform in sweltering NYC August. Uncomfortable is blistered feet on the second day of a weeklong trip to Rome. Uncomfortable is a scorched mouth after drinking scalding hot chocolate.

Somehow these procedures are never just uncomfortable.

Today was a trip to Long Island for an IUD. Well, technically the border of Long Island and Queens. Long Island Jewish Medical Center sits in both. The gynecology/obstetrics clinic is on the Queens side. But Queens sounds close. This trip requires a trip on the Long Island Railroad, so I’m claiming it. Toto, we’re definitely not in Kansas, anymore.

The clinic is a teaching clinic for residents. They see Medicaid and uninsured patients.

The resident thoroughly explained the procedure, the pros and cons, the alternatives, and the life of the IUD.

When I asked about pain, she said it would be uncomfortable. But it would be over relatively quickly. When I asked about pain management and explained that I would have to take three modes of transportation to get home, she offered Motrin, but said, “It doesn’t really do anything.”

I told her about getting an abortion with just a Valium. “That was definitely worse, then.”

“Wait a second. I have to ask you a question! Where do I go eat afterwards?” I anticipated being drained afterwards and wanted to treat myself. After some discussion, the resident, Dr. Cohen, suggested Dosa Hut for Indian. Luigi’s for Italian. Both in walking distance.

I got undressed and the resident returned with a supervising doctor and a nurse. The procedure was not uncomfortable. It was sob inducing.

I snapped my fingers. I held the nurse’s hand. I kept tensing in the stirrups.

And then the doctor announced, “Ok, now we’re going to insert the IUD.”

“Whaaaat?”

“Breathe deep,” the nurse said.

I don’t know how to describe how much it hurt. Only that the guttural howls that came out of my mouth were like nothing I’ve ever heard before. Not from me. Not from anyone else. They scared the part of me that hovered above the table.

The doctor expressed concern, but I couldn’t understand the words.

“It’s in,” the resident announced. “Should I cut the strings?”

The procedure was over but the cramping didn’t stop. The supervising doctor had a sonogram machine brought in. “Your uterus is extremely tilted. That’s why it was so painful.”

He then went on to explain that the IUD placement was not optimal and I’d need to follow up with the imaging clinic and blah blah blah because how could I listen when I was crying and cramping? He kept asking me questions and I just kept saying, “I don’t have any words.”

The supervising doctor left. The nurse left. The resident said something about a referral and was about to leave when I called her back. “Is that it? Can I leave?”

“Oh, yeah.” She suddenly realized I was still on the examining table halfway up in the air with my legs in the stirrups. “Here, let me lower the table.”

A nurse knocked on the door and came in. I was half dressed and bracing the counter. Still crying, I told myself again and again, “It’s over. The hard part’s over. You did it. You made it through.”

She rattled off instructions about the Motrin and asked if I’d eaten.

“No,” I replied without even looking at her. “But let me ask a question. Italian or Indian?”

“Me?”

“No,” I laughed at my own bad communication. “For food. Where would you go if you were me?”

“Italian. For sure. Luigi’s.”

I finished getting dressed and collected my things. I asked the nurses who were tired at the end of what was presumably a long day how to contact the doctor after the imaging I’d be getting. They told me to call the same number I’d been calling for over a week without getting through to the previous doctor who’d left me a garbled message.

“Can you help me with that? I have problems with the phone and I can’t seem to navigate the menu to get help.” That words came out at all surprised me. That I could form a sentence stunned me.

The nurse who’d brought me the Motrin got it. “Here, I’m going to make it easy.”

She wrote down the direct extension to the nurse’s desk at the clinic.

I cried one more time when I checked out at the front desk. There were supposed to be referrals and no one knew if they were printed or if they existed or whom I was supposed to call. The lady at the desk kept asking me questions and I didn’t have words. Just pain.

I sat in the waiting room as she figured it out. I left with two more referrals to call and manage another day. I left the hospital and I walked to Luigi’s.

Try the handmade pappardelle with eggplant if you’re ever in the neighborhood.

It’s over. For today.

Deep breaths.

Cent’Anni. May you live for a 100 years.

On my walk from the clinic to the restaurant

She lays down

We’re not out of the woods quite yet, but we’re making headway. Enough that I can look back with some clarity. Things are good and they’re getting better. My brain is starting to feel like my own. I’m able to connect ideas again, make jokes, laugh, smile, call upon higher resources.

But I’ve lost a lot. I’ve forgotten how to keep the kitchen clean. And how to keep on top of packages. Executive functions that require habit formation. They will have to be built up from scratch like the muscle tone I lost. It can be done. It’s just a matter of positive association and energy management.

I went through my Instagram stories going back to January. I can see the degeneration of my brain and spirit over those months. Months of knowing I was anemic but not getting help. I couldn’t see it at the time, but I started to lose the spark. I was facing burnout.

And for good reason.

I was dealing with a roommate who acted like a child and couldn’t pull his weight. I was dealing with having to cut off my father after he crossed an unnegotiable boundary for the last time. I had my boxes delivered and found my most precious items all gone…either stolen or given away by mistake. I came to terms with the fact that I wouldn’t be able to find another apartment that could be more accessible because I don’t have a regular job. And I helped a friend with all the intricacies of finding an apartment and moving and having to carry a burden I should have backed away from. It was all insidious.

Even in good health that would have been a lot to deal with. I got through every single one of those issues. The cost was what was left of my health. But I’m coming back.

Like the world after Covid, I will have come back changed. This wasn’t a little health scare. It was a tectonic shift. This time has given me enough of a scare to make me realize that I have to put my health first above everyone else. I can’t give what I don’t have. “No” has to become something I am comfortable saying. Pausing, breathing, and putting me first.

I have to stop pretending that I don’t have limitations. I got very good at saying, “I’m autistic.” Now I have to get comfortable saying, “I have physical limits.” I’m not a kid anymore. I don’t recover as fast. This body of mine has to get me through a whole lot more. I’ve got to start treating it well again.

And I have to get comfortable with age. It’s fine that I am in my 40’s. That’s something to be proud of. I have endured so much. Learned so much. Changed so much. My experience has inherent worth to it.

I had to retract to learn this. When things were getting bad and I could no longer access me, I started looking outward for someone to tell me who I was. Was I still a writer? Was I valued in anyone’s life? Was I important enough to anyone, not for what I gave but because I was me, to fight for?

I’m sorry to say that when you are the strongest person in your life, there is no one like you around to help you remember who you are. There are good friends who will be patient. They will give good advice. But no one comes and picks you up when you’re sobbing uncontrollably on the floor. Most people will flee. Let them. When you don’t know the Mariana Trench of sorrows, how can you navigate deep waters to help a friend?

I cannot blame people who cannot give what they do not possess either. I was forged in fire. Most people have not faced that transformation. And even when faced with the opportunity to transform, they yield.

I’m not bitter about this. Only cautious of who I give my time and energy to. When I am ready to emerge from this convalescence, I will do so with an open heart. I will still give freely without thought of recompense. If I ever become stingy or spiteful in that way, it isn’t me. It’s a sign that something is very wrong.

If this were to happen again (pray that It doesn’t) I should know it from a pressured inner monologue, behavior that is out of character, fear, anger, brain fog, fatigue, my hair falling out, my sense of humor disappearing, forgetting things, not being able to keep up with conversation…. That is not me. That person is someone else whose debts I still have to pay.

I am funny. I am ambitious. I am fearless. I am courageous. I am kind. I am inspiring to others. I am a place of healing and calm. And I am a warrior.

I hope you never have cause to doubt your brain. But if you have, I am here to remind you of how great you are. I am the holder of memories. And I will curate yours.

I miss so many people. I can’t wait to have drinks and hugs and laugh again. I can’t wait to meet new people. I have so much hope.

But first, more IVs, more tests, more answers. No more smoking. Ten years was enough. I can’t do what I was meant to do if I don’t have a body to take me there.

Not everyone feels this pull of destiny. I am grateful for its gravity. Without it, I’d just float away into space. Insignificant as a speck of dust. And never come back.

But I have promises to keep. And miles to go before I sleep.

Do you believe in magic?

I’m a writer, right? The most crucial factor to being a writer, in my opinion, is a strong inner voice. Oh you should hear the things that go on in my head! You’d be relieved with the head you’ve got on your own shoulders.

Normally, the thoughts that come are my friends. They’re funny and kinda brilliant. I can amuse myself endlessly. There are times when I’d rather be alone not because I’m afraid or annoyed by others but because I really have fun by myself. It’s gotta be someone I really dig to give up that precious time to myself.

This morning, I was finally able to tell my brain to be quiet. It didn’t listen, but I could at least stop it any time it started up. Such a relief!

I’m doing right by me. I’m taking care of the physical. Yesterday that meant a trip to the hematology clinic for iron and then a really not fun procedure at the urologist. I started crying as I got naked from the waist down and put a paper gown on.

Here’s the thing: I’m not a cryer. I’m a hardcore boss ass bitch. I get things done. I take risks. I aim to win. So who is this Weepy Wilma on a table with her legs in stirrups? It ain’t me.

I told Michael the other day that I haven’t been doing much boundary work lately. And I need to. I don’t just hear the thoughts in my head. I feel other people’s feelings and know things about them. It’s helpful when I need it, amusing when I don’t, but really a downer when their feelings become invasive. I’ve spent weeks now in doctors’ waiting offices exposed to a lot of emotions. Not all silent. At the free clinic on Fulton there’s actual screaming.

There’s a theory that this skill comes from a child who had to put someone else’s emotions before their own. Couldn’t tel you if it’s true. All I know is that I’ve got it. And it’s my job to ground myself.

This all sounds new agey but really it’s the oldest forces at work. My job is not to be timid, but to go out into the world prepared and ambitious.

When I’m ready. For now, it’s patience. It’s learning to trust the real me. Learning how to say less and sometimes just “No.” It’s recognizing that the life I built is a strange, unique, beautiful thing. It didn’t come ready made. I built it. Tear it down to the foundation and I’ll build another even stronger from the lessons I’ve since learned.

If I can start by quieting the voices that question that reality, find a little peace in the uncertainty, then I’m on my way. The rest is a leap of faith.

And also, take your own band aids to the hematology clinic. I have unicorns and rainbows and they don’t hurt nearly as much when I peel them off as the ones they have.

The struggle, she is real

When I was still a little kid, some people in my family started showing signs of illness and my mother drove herself insane looking for answers. I worry about going off the edge the way that she did.

She started reading the Bible. Then keeping a prayer candle lit 24 hours a day, unattended. Then keeping the prayer channel on TV. Then prayer cloths in our pillow cases.

There were photocopied medical articles laying around, tabbed and highlighted. There were a lot of doctors’ visits and expert consultations. Precautionary measures constantly taken. The smell of Clorox disinfecting things.

Fear just hovered over the house. My mother checked me once over meticulously for signs of the syndrome. Afterwards I went to the bedroom I shared with my sisters and collapsed in bed, crying. I was 10 or 11 and terrified all the time. But there was no comfort. No hugging. No reassurance. Not even any mention of love. Just…fear.

I don’t know what was really going on because all I have are little kid memories and talking about it just brings up unprocessed trauma. All I know is that the threat of illness was always around.

And I always felt sick. I was a sickly kid. There were all these little things that would happen to me. Not textbook worthy. Just that I got sick and injured a lot and it was always a little bit out of the ordinary. I always had rashes and bruises and colds in the winter and weird pains I couldn’t describe. The question was never if I was ok. The response to me saying I felt sick was, “What now?”

I always felt like I had to prove how sick I was but I didn’t have the ability to describe what I felt. Just that I felt something wasn’t right. And it wasn’t just the stress of living in a very scary household. It was real. Like the time it took two weeks to get anyone to believe I had something in my eye and extract it. It was a microscopic sliver of wood from my bunk bed. When the opthamologist finally showed it to my mother, I wanted to frame the damn thing.

I came down with walking pneumonia the first day of Christmas break in sixth grade. My mother wouldn’t believe I was sick. It was the day of the Christmas parade and I begged my mom not to make me march with the band because I couldn’t keep up. I can’t remember if I did, only that we drove from downtown Nogales, where the parade was held, to my pediatrician’s office next to the hospital. It was a place I knew all too well.

He listened to my lungs and diagnosed me. My mom got me Long John Silver’s (a Nogales novelty at the time) while we waited for my prescription to get filled at Walgreens. I ate a bit at the dining room table. And then I went to bed and slept for the better part of a week. My mother told me she loved me while I was conscious sometime during that week. That I remember it, and she as well, tells you that it was a remarkable occurrence.

I’m conditioned to ignore what’s going on with my body. It’s all in my head. And I’m discredited, so I don’t even believe me.

Right now, I know something is wrong. Not wrong enough to land me in the hospital. Not a burst balloon that captures everyone’s attention. More like a slow leak.

Part of me has been ignoring it. Part of me has been terrified I can’t take care of myself. And part of me feels like I’m going insane and can’t trust myself. And part of me wants to give up so badly because I have very little objective proof to show how bad I feel. There’s no test anyone could give me that would show what it’s like to always feel like you’re drunk without the euphoria. Or like you’re on a tall mountain, gasping for air.

It’s not enough to call anyone’s attention. Just enough for me to suffer and feel unable to take care of myself well. So I look for answers. And I worry I’ll alienate myself from everyone because of the way I act when I’m sick. I worry that I will undermine everything I have worked towards for years. Any bit of dignity and respect I fought for could be gone. I’d be left with nothing.

The only thing I can do right now is tell myself that my brain is weak. And the thoughts that come might not be reliable. And as long as I know that, I can’t be lost completely to madness. But I wish I didn’t have to do it alone. I wish I could just take a back seat to my own care and let someone else call doctors and go to visits and read articles and order groceries and respond to voicemails and keep track of appointments and vitamins and medication and on and on.

But it’s mostly just me. Fighting not to lose me. The best parts of me. And any credibility I might have. I’ve seen how little my life is worth when the chips are down. I don’t want to end up in a home or a hospital. Dismissed and forgotten and collecting dust.

So I tell myself to rest. And wait. And pray. And hope. Because, really, there’s not much more I can do.

I don’t pity myself. I’m just angry. I have things to accomplish. People to help. I don’t have time or money to spend on this misadventure. This big, beautiful brain that is capable of so much. It just feels like such a waste.

Today I don’t feel like doing anything

I was listening to Talib Kweli’s podcast featuring Fat Joe yesterday. Fat Joe talked about having to sit in jail for four months and how it forced him to sit with his thoughts.

My inclination when something is wrong is to “do.”
Think my way out of a problem. Act. Shop. Build. Cook. Activity is my way of dealing with things. I look for solutions.

Sometimes there are no solutions though and I feel my brain trying to find them. Sometimes the answer is to wait, to observe, to be patient, to delay gratification (in the sense of a solution).

This is the lesson that is hardest to learn. Covid was all the more difficult for so many to bear because it stopped the grind and suddenly people had to sit with their thoughts. As the joke goes, they decided instead to make bread.

I kept busy in 2020. Tiny pulses. Lots of creative work. Learning was my “doing.” Writing too.

But what do you do when you’re dealing with illness that deprives you of mental faculties? Only then was I really presented with the challenge of not doing. I can’t fix everything. I just have to let the iron IVs do their jobs for now. Answers will come when they come.

Agitation and anger keep me alive. But they work against the greater purpose of thriving. How to strike a balance that lets me rest and heal? The answer might be found in silence and patience. A leap of faith. A test.

Oh Michael, You Devil.

What it actually feels like

About a year ago, in April, my period suddenly changed. Not that it’s ever been “normal.” When I was 18, I started bleeding for three weeks at a time until I couldn’t climb the stairs to get to my bedroom on the 3rd floor of the house my family was living in back in La Jolla. I started seeing stars and everything would go dark. But without any knowledge of human anatomy and what is “normal,” it took me a while to ask my mom for help.

She took my to a gynecologist. He put me on birth control and iron pills. My mom never mentioned the iron deficiency or asked me if I was ok. The only comment she did make was as we left the doctor’s office. She said, “You better not think this (the birth control) means you can start having sex.”

And thus began over 20 years of really bad times with my reproductive system.

Birth control never stabilized my cycles. It made me feel funny. And there was always pain. Not like, “Ooh, let me hold a pillow and watch Christian Slater movies” kind of period pain. More like blinding back spasms that took my breathe away for 3 days a month and then really bad cramps. I told my mother and she said that she’d never experienced anything like that and I must get it from my father’s side. Note: anything that came from my father’s side was inherently bad, shameful, peasant-like, and therefore not to be discussed. A lot of things about me came from “my father’s side” according to my mother.

I tried pills, depoprovera shots, Lunelle shots (which mostly worked and then got discontinued), patches, etc.

And then I tried getting pregnant at 26 and went off birth control altogether. This, whatever this perfect hormonal storm was, led to a psychotic breakdown four months down the road and a diagnosis of bipolar disorder.

I went back on birth control, now the Nuvaring. But now I was on a revolving door of psychopharmacological drugs that affected hormonal levels in ways that no one told me. Some of them affected my prolactin levels. And when combined, it caused (I believe) autoimmune disease like reactions. From the ages of about 30-34, I felt sick all the time. The symptoms could probably be most closely compared to lupus. Basically, I was miserable, couldn’t get off the couch, and not really a joy to be around. Everyone thought it was all in my head. Including me. I thought that, at my core, I was really a terrible person. And my world crumbling down around me only verified that.

I’m pretty sure Mother Teresa would have been called a cunt if she had been feeling what I had been feeling. As I am no Mother Teresa, I was more like the second coming of the Devil himself. I had zero energy and I was angry all the time.

I got off most of the drugs (suicide attempt in 2015 and subsequent drying out in the ICU will do that to you). My periods became normal or at least somewhat regular. The pain never got better though. Every month, lots of pain. And nothing I took helped. The anemia never lifted either and I spent my 30’s getting iron infusions at a doctor’s clinic in Tucson every few months. It wasn’t a big deal. I just incorporated it into my low energy lifestyle. My parents’ solution was to have me sell my house, give them them money and move in with them. Maybe become an elementary school teacher.

That’s probably the worst idea in the world for reasons I don’t need to go into right now or ever again.

My mood, on the other hand, got better with a lot of therapy and I started living life. I moved to NYC even and, remarkably, I was able to take care of myself.

So now we’re up to April 2020. The pandemic is raging, and I’m stuck in Tucson without any medical insurance. My period all of a sudden gets longer and I’m anemic. I go to my doc and get B shots but can’t get an infusion because I don’t have recent blood work.

I make it back to NYC and finally get into Planned Parenthood in September. When I ask the nurse practitioner what could possibly be going wrong, she says I’m too young for perimenopause. I ask a few more questions and she prints out five sheets from a computer that say, “It could be this but it could also be something else. Or it could be nothing. Ask your doctor.” Which is what I thought I had done. That appointment was so draining I didn’t talk for a couple days afterwards. I just rocked back and forth in bed and cried.

Things just stayed bad. Only now I was at the end of January 2021. My energy is low. My hair’s been falling out. My nails just break and my skin is dry like never before. The pain went from just the already horrible PMS to basically all month long. Sex just hurts. How can I tell the anemia is bad bad and not just “how Vene lives” bad? Because I don’t have the energy to put on clothes or dry my hair after I take a shower because the shower itself has tired me out.

I know things are bad bad bad when I start having heart palpitations and lower leg pain at night. I go to my PCP the first of February and meet with a nurse practitioner with a complaint of chest pain and no energy. I get blood work done. A Telehealth doctor tells me to take oral iron. Except that in my appointment, I told the nurse practitioner that I don’t absorb oral iron. Never have. And it only got worse with GERD because I had to take acid reducing medicine (HCL is helpful to iron absorption). What I don’t know at the time is that the medications I’ve been taking to control the GERD–proton pump inhibitors (Omeprazol), H2 blockers (Pepcid), and antacids–can also induce or worsen iron deficiency anemia. This I learn on my own just by reading. It’s how I learn a lot of things doctors never acknowledge or tell you themselves.

You know what I do get told by everyone? Do some stretches to help with the pain. Maybe yoga. And eat leafy greens. Like I’m an idiot. Also, this is just bad advice for my particular body. I need heme iron, which only comes from animal protein. And part of the pain I’m dealing with now constantly is that I’m too stretchy. I’d wake up in the morning and body parts would hurt like they’d been pressed out of joint by an unfriendly giant. Everything about me is too stretchy.

If you’re a guy, none of this might register with you. But I’m a 41-year old woman. And even most of us women don’t hear about the negative experiences other women go through related to their reproductive systems because it’s just not talked about. But I have three friends at this point who’ve had hysterectomies because the bleeding and pain were so bad (adenomyosis, endometriosis, fibroids). All their stories include suffering you can’t imagine. Not just the pain but the iron deficiency anemia that robbed them of normal lives.

And that’s where I’ve been for the better part of a year. What’s normal is debatable, especially in a pandemic. But I know my body. I know when something is wrong. And no one is listening. So…I go to Forward, a concierge-like doctor in Manhattan. They don’t do anything special except for one thing. They run a second blood panel on me. My CBC keeps coming back saying I have moderate anemia (my hemoglobin is at a 9). But when the second panel comes back (Iron, TIBC, Ferritin), it says my ferritin is at a 3.

Still, no help. Again I’m told to take oral iron. When I push back and say it doesn’t work and I need an infusion, I’m told that I’ll need to go to my PCP for a referral to a hematologist…whom I’ve already gone to. Only I’ve never met her. Just staff. And they wanted me on oral iron too. I’m taking the oral iron. I’m using a cast iron pan. I’m using a lucky iron fish to reinforce the iron in the water I’m drinking. Fun thing about it is that iron needs vitamin C for absorption, which means it exacerbates already bad GERD. The GERD only gets fixed one way…a revision of a surgery I had in 2012 for a hiatal hernia. The hernia was so bad, I’d wake up in the middle of the night choking on stomach acid and blowing it out my nose. Yeah. Fun times. I don’t want it to get bad again like that. But the proton pump inhibitors or H2 blockers or antacids that would help with the GERD only make the anemia worse.

I don’t want to eat anymore because everything just leads to esophageal pain at this point. All I can take is baking soda. Too much baking soda and you can trigger depression. Like that needs any more triggering.

Things are bad. Like I can’t take care of myself. I’m freezing because I don’t have ferritin to regulate my body temperature and mild cold feels like arctic cold to me. I don’t even shiver. Iron deficiency anemia can lead to hypothermia at warmer temperatures than normal. I’m not dying of cold because I’m always on my heating blanket in bed, but 60 degrees is cold enough to induce physical pain on its own.

My brain is deprived of oxygen. I can’t read or pay attention. I can’t clean my apartment or cook. I don’t leave my apartment because I don’t have energy and I’m afraid of breaking down somewhere far from home where I can’t get back. I have no one to rely on to help me do anything. I’m reading medical journals to figure out all this data I have that everyone is ignoring. I’m trying to get referrals to a hematologist and gynecologist and a urologist (because that’s a thing now too) though my PCP, but that means getting really lucky with the referrals office upstairs at the clinic.

And the worst part is…I can’t tell practically anybody. My friends’ problems are taking precedent. Even when I start to mention that I’ve been crying a lot or unable to do things or feeling horrible…it doesn’t register. So I just stop mentioning it. I start to lose touch with my body altogether. If I can just block out the pain, the cold, the weakness, the lack of oxygen, the lack of sleep, the ever present tiredness…and just pretend everything is fine, I don’t have to admit how scared and alone I feel…and how often I’m feeling it.

All these doctors and medical people I’ve gone to have said to go to the ER if things get bad. Which they do. I almost black out because I got up too fast, and fall down a flight of stairs onto my back. This, I figure, is enough to warrant a trip to the ER–a fancy one in downtown Brooklyn–where I am told that my anemia is only moderate and I should go home and talk to my PCP. Actually, they say they’ll get me in with a hematologist but that’s a lie because they know I have an HMO and they can’t refer me. But they want me off their service, so to home I go.

Finally, my sister (a gyn) listens and starts trying to get me help. Help is a visit with my actual PCP. And wouldn’t you know it, suddenly I get referrals. She gets on the phone herself while we’re in the office. Of course, it means a lot of work for me keeping all these appointments in order, the names of the doctors, the referral paperwork, all the test results, the travel, the waiting rooms, retelling my story over and over, the poking and prodding, and the blank stares of health care staff who are overworked.

The gynecologist cancels my appointment but my sister had already gotten me into a hospital at the far end of Queens in some town called Floral Park. They can fit me in same day if I can make it. It’s a schlep out there in the rain. A long visit in a freezing office. And a biopsy in which part of my uterus is just ripped off and I begin to bleed a little and cramp real bad. And then a long, cold train ride back to Brooklyn in which I cannot cry even though I want to because it will consume the rest of what little energy I have and I need to make it home from Barclays. Which I do. And then proceed to collapse in bed, on my heating blanket, and cry from the pain and exhaustion. Crying on my bed from pain an exhaustion is pretty much par for the course these days. Who knows this? Very few people. Not because I’m not sharing it. But because I might as well be saying it in Klingon.

Why the biopsy? Because I’ve had a transvaginal ultrasound, ordered by someone at my PCP’s office months back, and it shows a heterogenous uterine lining that is cause enough to warrant a biopsy. ONLY NO ONE’S EVER TOLD ME EVEN THOUGH THEY’VE SEEN THE REPORT. And no one has told me that, while a hemoglobin number of 9 is in fact moderate and not great, a ferritin level of 3 is fucking insane and actually severe (the minimum for normal is 12, but good is at least 40). It’s the secret part of the story that reveals that I don’t have moderate anemia. It’s really fucking bad.

Are you exhausted yet? Because I still don’t have answers and I’m really fucking exhausted. And I still have to advocate for myself and somehow take care of myself. So no, I don’t want to be friends with anyone right now. Not when my uterus feels like it’s getting kicked every five to 10 minutes, every day. Not when I can’t throw the trash downstairs without taking an hour to recuperate once I’ve come back up the stairs. And I’m leaving things in weird places. I’m unable to remember things. And I’m not eating because I can’t figure out how to make food, even with a stocked fridge and every food makes the esophageal pain worse.

How do you live independently in NYC when these are your limitations?

I get my first iron infusion on the 17th. But I’m far from an answer and a cure. Is it adenomyosis? Is it Ehlers-Danlos syndrome? Is the solution an IUD or is it a hysterectomy? Is the IUD only going to cause more problems? How will I respond to the iron? And when do I start feeling like a human being again? When does life start? Because it’s horrible right now and I’m barely able to take care of things as an autistic when I’m at 100%. There’s no one who’s going to take care of me if things get worse. There’s no home to go to. No parents who will buffer costs. No husband who will run errands. Nobody to help me recover here if I do need surgery. Everyone who does love me has stuff going on too.

And when I do have one good day out of five, it makes me believe that I’m making the whole thing up.

My 25% looks like most people’s 75%. When I feel like I’m drowning, I still look like I’m fine to everyone because I can handle a whole lot, my depression looks like agitation and anger and not moping around with a sad face, and I’m really good at faking being ok. Why? No one wants to hang out with someone who’s fragile or a burden.

I’m disappointed in one friend in particular and I don’t know what to do with him. Maybe he doesn’t get it because he’s a dude and young. Maybe no one can get this. Should I be disappointed? I don’t know. But I don’t know anything at this point because I’m so out of it. I just want that to register. I don’t want to be a burden. But some kindness would go a long way right now.

Am I a cunt again? Probably. I feel like I’m losing it.

I JUST WANT A HUG. That’s it. I don’t need anyone to understand it all. I just need someone to say, “I see it’s really hard for you right now. I know this isn’t you all the time. Here, take a breather. How can I help? I won’t demand anything of you. I won’t be disappointed in you if you can’t do fun things. I just want you to relax.”

I’m starting to demand it. Beg for it, really. And help has been coming. Small offerings from different quarters that together are keeping me from going off the deep end. But I need more. I need a village to raise this pale, weak child.

So yeah, it’s a bitch.

Oh, and I have an ant infestation that I have to deal with. So there’s that.