Tremé

In the ten years between 2010 and 2020, the “oldest Black neighborhood in America” went from being roughly 95% Black to being about 55% Black. The white population went from 5% to about 36%.

I am white and my family is old New Orleans French, Spanish and maybe passé blanc Creole but we aren’t entirely sure. In other words, we are like a lot of locals who can trace our roots back a long ways here. So I have stake in the game from one viewpoint- I love my city and have strong feelings about preserving the culture. On the other hand, much of this culture is something that I get to love and respect but not from inside… I enjoy it as a guest even though I am local, because I am not Black and my heritage is local but not the same exact type of local. I think most New Orleanians whose families have been here a long time would understand what I mean.

That being said, there is an old saying that someone coined and put on a t-shirt that I love… “everything you love about New Orleans comes from Black people”. It’s meant to remind the racists and carpetbaggers that they need to take their nonsense elsewhere. Clearly it’s only like 97.8% true… but regardless it is true enough that the things I grew up loving in the French Quarter have diminished over time, but I have found them again in Tremé. However, they are dying off there too.

On this French Quarter Fest Saturday I did not take my usual route to Cabrini park on my Saturday walk. I went instead down Governor Nicholls to Henriette Delille (Mother Henriette Delille pray for us that we may be a holy family) and then wandered my way back to Rampart. I passed St Augustine Church and the Tomb of the Unknown Slave. St Aug is still saying mass in the parish hall. Hey, archdiocese – that’s shameful. Ida was 3 years ago and that parish is over 180 years of the Catholic Black community. Help fix it already. If you can pay the pedophiles’ legal bills, you can help fix that church. Sorry, I digress.

As I walked past the church, and sweet talked the two little squirrels playing in the oak tree outside, I listened to two bike tours and one walking tour pass me. Not one mentioned that church. They talked about the depths of the houses across and didn’t use the term Creole Cottage where it was appropriate. They talked about spiritualism and voodoo but forgot that all of Faubourg Tremé is basically sacred ground as the memorial plaque at the church reminds us. I heard a white voice tell a white story to white tourists in a hurry to get their pink hurricanes and green hand grenades.

I walked back by way of Barracks. There was a reggae band practicing behind a high wood fence near Barracks and Rampart. I found two puppies sitting on a front porch with an older Black lady having her morning coffee in the shade. The street was cool and breezy and I could smell food that clearly wasn’t vegan. This (this small block) was home.

Off my chest, onto yours

I have this thing that I feel a need to share. I can’t go telling the people I know, beyond family and close friends, because it would be an inappropriate sympathy grab and it isn’t even really my story to tell. It is my son’s. My heart hurts so bad right now though.

So he’s autistic and a sensory seeker, so he needs sports, but he’s hypermobile. I have him on a mile-long waiting list at an EDS clinic. He was officially diagnosed with BJHS a long time ago, but that’s a BS diagnosis; the disease doesn’t officially exist anymore, and it hasn’t since before he was diagnosed. It’s like Asperger’s. Don’t @ me.

Anyway. The doctor said sports were fine. I said no football. Dad said let him, and I lost.

We had a series of bad sprains, but he played through them. His pain tolerance is crazy high. Last year, first scrimmage of the season, he broke a bone. Hypermobility actually made the break not as bad as it could’ve been, but he healed slow, and he was out the whole season, and soccer was rough too. His PT didn’t even really start till soccer was underway, and one leg was atrophied. He got winded easily, and he just generally didn’t have a good season. That was junior year.

This year, he was recruited for a military academy. He should not have been, since he’s autistic, and I think at some point they would have cut him loose, but he was hopeful and pushing through the process. He was excited. And he was playing football, and strongly believed he’d be the captain of his soccer team. He has been playing on this team since he was in 8th grade, and he’s the leader, both in skill and knowledge, and in heart.

Then, last week, in the first game of the regular football season, he dislocated his elbow. They reduced it at the game in the locker room with no anesthesia. He’s a trooper. No tears, just some groans. It was the hardest thing I’ve ever witnessed as a parent, and I’ve witnessed a lot. I have two kids with chronic illness. I can’t even be mad about football, because he could’ve dislocated it riding a bike. He fell on his hand – it wasn’t a tackle or anything.

He thought it was just a sprain – high pain tolerance, remember? We got xrays, they said no biggie, you’ll be back in a week. But the trainer wanted an MRI done because it started swelling badly.

Every ligament except one is fully torn. One fully torn and 2 partially torn tendons. 2 fully torn muscles. 2 damaged nerves. And a small fracture.

He’s done. Military academy is out for sure, now. Football is done. Coaches had emotional conversations with him about how coachable he was and how much heart he had. The soccer roster came out, and he isn’t on it. My heart hurts for him. We’ve cried together three nights in a row. He doesn’t cry often. He just stands there and holds me and I hold him and we cry. This is his senior year… and it will be nothing that he dreamed or hoped for. And I feel like his teammates have moved on. I mean, why wouldn’t they? They have games to win. I get it, but it hurts me so bad to see him hurting.

Parenting is hard, man.

Not today

Today is not a good day. Nor was yesterday, or the day before. I am lonely. I feel bitter and frightened and alone, and no, that is not redundant. You can be alone without being lonely, and you can be lonely without being alone.

My husband is out of a job, and this is the second time in three years. The first time felt scary, but looking back it wasn’t so bad. He got a strong severance package, and we were fine. He was employed again in three months in a job that made him reasonably happy. This time, we had six months of expenses liquid. I guess we can cash out retirement money if we have to, but we’d rather not. We’re three months in. But that six months of expenses didn’t include the AC having to be replaced, the car needing $2,000 in repairs, increased school fees, food costs skyrocketing, insane medical bills because the marketplace insurance SUCKS… you name it. So we really have three months of mortgage, and everything else is mine to cover. I’m drowning, choking… I can’t breathe. I feel like I have never been more alone, because I can’t even talk to my husband. He’s as stressed as I am if not more.

I don’t know what to say beyond this. I just had to say it to someone who wasn’t myself. The words have been circling in my head, over and over. I am crying for no reason, and I have to bring my daughter back to the doctor in the morning and to therapy tomorrow and my son needs a haircut, and this is a run-on of costs. I could go on all day.

All the things I don’t know about everything

I know how to make it look right, but I don’t know why it works.

I know it needs water. Not sure how much, or how often.

I couldn’t tell you what a comma splice is. I’m actually pretty sure my grammar isn’t perfect, but I think I avoid major errors. I avoid them mainly because I know what feels wrong.

I can barely remember debits and credits, and I do this crap for a living. (Increase an asset with a debit. Increase an expense with a debit. Increase a liability or revenue with a credit. There… I did it).

I wish I could remember how to do a 4:3 polyrhythm right. I could join a tiktok trend. No clue, though. I can tell you when all the others do it wrong… syncopation is NOT the same thing as a 4:3 polyrhythm. But I can’t do it myself. And yes, I recognize that the grammar is wrong in both this sentence and the one directly preceding it.

The only thing that I am sure of is that I am generally able to keep the civilized veneer of lies in place, so people think I know things. I fool them. Silly them.

Vigil

I dropped my daughter off at school this morning, and as I headed back towards the river, I passed underneath the bridge and through a homeless encampment. It looks like all of the people there got their tents from the same place. They were different colors and slightly different sizes, but they all had the same primary color bottoms and grey swooping overhangs. They were neatly lined up in rows with an occasional shopping cart or tethered dogs to break the line.

That part of the city always makes me feel guilty. I wasn’t raised Catholic, but I’m a convert. Either I acquired the guilt as an adult, or I converted because I had inherited the guilt from distant Catholics ancestors, passed down as a genetic trait, like my brown eyes or my bendy joints.

I feel guilty because of the culture that was destroyed when the interstate was put in place. That interstate makes my life easier, and it destroyed the neighborhood. I feel guilty because I can’t feed everyone who lives there, and I can’t bring their dogs to the vet, even though they clearly need it. I wear guilt around me like a cloak; it weighs me down and makes my steps heavy. Guilt for things that I can impact and guilt for things that I will never touch.

I leave the tents behind and cross the river, still misty in the morning fog. On the Gretna side, there is a hospital, suburban and squat and plain. As hospitals go, it is small. I had a minor surgery done there last year and there was a roach in my room. It smells more like a vet clinic than a medical facility for humans, and some of the equipment is literally fastened to the wall with duct tape. The people are kind though, and efficient. My father-in-law’s needs are met and they are running the right tests.

It is amazing to me how many different blood tests can be done from just a few vials per day. I guess it doesn’t take that much blood to see a microscopic protein or count how many red blood cells are in a square inch on a smear if that’s how they do it. I’m not entirely sure, since I do money, not blood components.

He is alone when I get there — my husband left ten minutes before to catch a quick shower before work. We overlap when we can, but sometimes it is impossible. The room is quiet and the machines hooked up to every inch of his frail chest and arms are unavoidably loud. They beep, hum, vibrate, all to different rhythms, closing my chest and throat as I feel little flutters of panic to the uneven beat. I breathe in, count, breathe out, and sip my coffee. He opens his eyes and sees me, and we commune in peace, breathing gently together.

Riverbend

I’m sitting in a fellowship hall of a Presbyterian church in Riverbend, listening. There’s a horn player practicing outside (alto sax if I’m not mistaken) and about twenty treble voices rehearsing for the children’s chorus in the opera upstairs. The piano plays the same lilting romantic leading tune over and over, punching slightly on the notes the children are supposed to come in on. One other parent sits with me, at the other end of the room. His YouTube video is loud in his earphones and I wince when the music clashes.

A tree branch is scraping against the window, and the director upstairs thumps time with her foot. The rain on the pavement shushes beneath the tires outside, and the young sopranos sing too loud on the b flat.

I can smell my own perfume slightly sweet, mixed with the hundred year old church smell of hymnals and spilled coffee and new carpet. The thumping has stopped, but I still feel it in my skin, which feels tight in time to the piano’s emphasis doo DOO doo DOO doo DOO OOO OOO. My turtleneck is stretched and slightly scratchy, and I can feel the chill of autumn on the edges of my ears where they rest in the cold above the collar. I try to sink down further but it is futile; my neck won’t become shorter.

My right ankle hurts like it needs to pop, all the time, and I rotate it in time too the music, pop rest rest rest pop rest rest rest. A mosquito hawk follows the movement languidly, moving slow in the chill air. The fluorescent lights are glaring, and the other parent chuckles at a funny moment in his video. The fake ficus tree needs to be fluffed and stretched so the leaves look like they seek the sun. Nineteen minutes left, and I can’t read. My brain is too busy.

Now eighteen, and the door to the street squeaks and slams. Another parent to invade my silent reverie.

The observable you

Dear Sana,

You asked me to tell you what I see — what the outside vision of you is. However, to be honest, I am not sure how to do that. I am not outside. We sit on the same sofa, you borrow my shoes and I wear your earrings. My perspective will not be the same as your doctor’s or your teacher’s or your friend’s. For your sake though, I will try.

You are both fragile and indomitable. You grit your teeth and raise your chin, waiting for the cross to follow the jab. You even do that when you are singing.

I can see how tense you are, all the time. Your shoulders are stiff with waiting, and even when you sleep you hold yourself still, almost rigid, waiting for the dizziness, anticipating a fall, flinching against the noises that might send you into nausea again.

You are pale with black caverns for eyes, or expertly made up with a hint of pain and wariness beneath the perfectly blended eye shadow.

You are angry and brittle with the softest lilting voice to belie your rage.

When you are dizzy, you lurch through the room like a car being driven by a child. Your limbs flail and you careen into walls and sofas, holding yourself up by stretching your arms till you reach the next milestone. Your arms carry your legs.

Sometimes you curse and keen, when the pain is bad. It used to be that you only cried for the little hurts. Now everything is a little hurt and you save the tears for the moments that you feel you can’t go on.

But, my love, you always go. You go on. You breathe through the fears and fight the chaos in your head. You persevere.

Love, Mom.

Navigation for a novice

It’s funny how the story looks different from the inside.

I have one child who is autistic and has Hypermobility Spectrum Disorder. I think it may be more than that, but my diagnosis doesn’t count, and at the end of the day, we treat a wide variety of issues as best we can, and worry about diagnosis on another day,

I have another child diagnosed OCD with a wide variety of health issues that were difficult in the moment but have eased up.

In each flare up for each child, or in the moments when I am fighting for accommodations at school, I actively seek information. That means I follow #activelyautistic Twitter and #neisvoid, EDS blogs and mental health and neurodiversity activists. And when we are in the moment, I want to share, but then the moment passes. The dislocation heals, we pass that particular math class, we figure out what allergy is causing the skin issues, and we move on.

When I am not in the moment, I watch and learn and listen and feel so lucky that our moments pass. That sounds unfair. I hate comparisons and I hate feeling blessed because “others have it worse”. That’s sick and twisted and I struggle to not feel complacent- to keep my empathy at full capacity when things are easy.

But today, I think I realized that child 2 has finally hit a diagnosis that will never ease for long. It will be medications and diets and restrictions for the rest of her life, and all of that to hope that she can still continue to pursue her passion. That’s overwhelming. We had a bad six weeks, got a diagnosis and a treatment plan, had a good four weeks, and got comfortable again. Then she went to a dance at school, or her hormone levels changed, or she got too excited on a phone call. Something triggered a flare, and we don’t know what. The doctor said this will be her future. Good times following the rules, and bad times despite following the rules.

She cried tonight. Her words… it is so hard to only have my own body to be angry with. No one to blame but being betrayed by my body.

What do I say to that? It’s gonna be ok… (maybe). I get it… (I do and I don’t). Just stick with it and things will get better… (we hope). The meds are making it better… (are they?). I can’t sleep. I hate not being able to fix it, not having answers. I feel like I’m failing.

Truly silenced, but maybe heard

It’s ironic that my last post was about being silenced, about the unheard voice crying out for help.

Sana is a musician. She’s only 13, so it is premature to pin hopes on her talent, but she’s got a voice, a big one. She’s been studying classical voice since she was old enough, and before that did Children’s choirs. She plays flute and piano, but singing is her first love. This year she auditioned and won a place in a well-respected arts academy for high school to train. She works hard and loves her craft.

The final stop in the doctor rounds was ENT. She went through three days of testing there, scans, pressure tests, eyes, ears, balance, you name it. We finally received a diagnosis, sort of. It’s a nebulous thing, loose and unclear to me, with no easy resolution.

She meets the criteria for Ménière’s syndrome, which is the same criteria as Ménière’s disease. However, the don’t move it to the “disease” line until it becomes idiopathic, meaning they don’t know what’s causing it.

Her official diagnosis at this point is “third mobile window” meaning that somewhere in the inner ear there is a gap in a place that should be closed, causing a pressure imbalance which causes the vertigo and nausea. There are some hearing related symptoms too – loud noises make her dizzy, she can hear her pulse inside her head, and sometimes her own voice makes her dizzy. She has tinnitus and a feeling of “fullness” in the ear, and feels like she can’t distinguish words even though her audiograms are good.

The scans showed two places that are possible issues – the bone above the superior semicircular canal, and (hoping I have this part right because it’s a blur in my head) a bone between the craniofacial nerve and the cochlea. Or maybe it’s something else there he saw… I have written possible craniofacial dehiscence in my little notebook.

There’s surgery for all this. Bone putty and plugs, peeling back portions of the brain or going in blind with laparoscopy. I’m not sure how it all works, except that different doctors use different methods, but our doctor is trying a conservative approach first. He’s treating as though it is Ménière’s or perilymph fistula, with diuretics and diet and strict behavioral modifications. One of those modifications is no singing for 6 weeks (and no flute). She is lost and voiceless, wandering through her world like a ghost.

So, TL/DR, it’s ironic that I talked about being silenced metaphorically, and now she literally is.

The fear of being silenced

Many years ago, Sana got sick. I think she had mono. I’ve heard the tests most doctor’s offices use are inaccurate. She was tested, and it was negative, but so was flu and strep. She had fever and sore throat and swollen glands and a god-awful post viral inflammation response.

She was tiny – six when she first got sick, and it came on suddenly. Her teacher was so scared of her fever that she actually snuck her Tylenol at school, against all the rules, since I was half an hour away. It was about 104, and she was in pain. I brought her to urgent care, and they sent me to emergency. They got the fever down to about 100, and it stayed there for almost six months. (Yes, I know that isn’t TECHNICALLY a fever. Yes, the doctor told me to stop taking her temperature. I didn’t stop.)

Her skin was pale, huge dark circles under her eyes, and rashes around her nose and mouth and on her cheeks. Her knee was in pain constantly, and it was red and hot and swollen. She complained of abdominal pain, crying for hours on end. She had mouth ulcers, strange skin reactions to the sun, unexplained rashes, and the constant non-fever slightly elevated body temperature.

Doctor after doctor ran tests. Her ANA titer test was positive (inflammation marker, basically – sometimes auto-immune but sometimes not. Post-viral can cause it but they didn’t tell me that at the time). LDH was high, bilirubin high, white count high, slightly anemic… we took so much blood, and we waited almost a year to see the single rheumatologist available in the city.

During that year, she complained about the knee pain so much, she eventually refused to walk on it. Her doctor suggested crutches, and life sort of normalized. We went into the rheumatologist’s office with her on crutches and a binder full of test results and photos of rashes. The doctor spent three minutes in the room, diagnosed her with a somatoform disorder, and told me to get her mental help. We repeated the ANA test and it was normal, so we packed away the crutches and convinced her that she was fine without them.

I brought her to a psychologist who diagnosed a generalized anxiety disorder and OCD, but they were doubtful about the somatoform diagnosis. It didn’t matter. We were done with doctors. Sana agreed. CBT was good for her, and after two years of working extensively on managing anxiety, she declared herself graduated. Her psychologist agreed, and pulled me aside at the end of her last session. “I think it’s time for you to consider that the Illness caused the anxiety. I don’t believe the anxiety was the source of the Illness.” It didn’t matter. We were done with doctors. Sana agreed.

She’s thirteen now. This school year, she started complaining of dizziness. I’d experienced a lot of fainting as a child. I have a hypermobility spectrum disorder, and nowadays I think they’d call what I had POTS but at the time they just gave me fluids and salt and told me to stand up slowly, so I didn’t stress over her dizziness. I’d gotten better once I had my first child, so I figured it was a normal girl development thing and I blew it off.

She had COVID in December. In January, she had a couple of scary blood pressure drops and unexplained rashes. I was worried about heart complications so I called her doctor. I couldn’t bring her in though; I was still COVID positive myself and pretty ill. The dizziness grew worse, and the blood pressure thing repeated a few times. We kept an eye on fluids and reminded her to stand slowly, but it wasn’t enough.

About three weeks ago, she started vomiting almost every time she stood or moved around. We thought it was a bug, but after several days it became clear that it was related to the dizziness. I did a lying/standing blood pressure and pulse test and it showed a significant rise in pulse and drop in pressure. I made an appointment with cardio to get it checked, but it was about two weeks out. In the meantime, she fell at home and at school on the stairs, and hit her head. I brought her to the ER and they setup appointments with immunology and neuro also, and we scheduled with an ENT who specializes in balance.

Immunology and neuro definitely felt that it was orthostatic. Cardio on the other hand was very wishy-washy. Both Sana and I walked out feeling dismissed. They prescribed meds and recommended “lifestyle changes” but it still just felt like a pacifier.

I don’t know that it’s orthostatic, since they couldn’t recreate the heart spike in the doctor’s office. But on the other hand, the machines weren’t working right. Everything was manual and it was weird and half-assed. Her left ventricle mass is low compared to the rest of the heart. According to the cardiologist that doesn’t matter. I don’t know. I hope the ENT has answers. I hope it is something simple like an ear infection – give her antibiotics and it’s all better.

I think we both have PTSD though. I know people use that term lightly. I’m not. I can’t sleep. I feel sick and scared and have nightmares that we get told it’s all in her head. She’s exhausted and drained. We dread (DREAD) doctor visits. We hate this so very much. I’m crying every day, hating myself for looking for symptoms of psychiatric issues. I don’t see them, honestly. I see a child in distress. She’s walking into walls, stumbling, vomiting, sheet white. And I am questioning my child, who needs me to fight for her.