They Found It and Stopped Looking

I was born with optic nerve hypoplasia. It’s the reason I’m blind.

They found it early. That’s the problem.

Finding the optic nerve thing gave everyone an answer, and an answer is the most dangerous thing you can hand a doctor, because once they have one, they stop looking. My blindness was explained. So everything else got folded into the same story. She’s blind. That’s the picture they settled for.

The symptoms that had no name #

I was thirsty my entire life. I was always thirsty. Nobody thought much of it. Thirst isn’t a symptom worth chasing when you already have an explanation for what’s wrong with the child.

I stopped growing at twelve. I’m four foot ten. That was just how tall I was going to be. Some people are short.

My periods were irregular from the moment they started, and they started at eight, which is early. Some bodies just do that.

I couldn’t handle heat. My mom learned to leave me home on hot days, to sneak off with my sisters to birthday parties and leave me with my dad, because she knew I’d get sick in the sun. At Sea World, when I was twelve, it was 110 degrees with the heat index. I started to itch, the way overheating always started for me, uncontrollable, the kind where you tear your own skin if nobody grabs your hands. We tried to watch Shamu and couldn’t, because the shaded seats were gone and I couldn’t sit out in the sun. Later I sat on a bench while my sisters played on the climbing net I’d always liked, and I started to pass out. My mom caught me as I fell forward. The rest of the day was first aid.

I remember the tests they ran on my heart. It was lowest when I lay down. Higher sitting. Worse standing. Worse again when they made me walk.

That pattern has a name. Orthostatic intolerance. My body couldn’t keep my blood pressure up when I stood, and my heart raced trying to compensate. It was a measurable sign of dysautonomia. And the first aid staff looked at it, and the doctors after looked at it, and none of them asked why a twelve-year-old’s heart did that.

I couldn’t feel full. I had no idea what a portion size was. I’d eat what was in front of me and never get the signal that said stop. That got me in trouble more than once. It got me called greedy, thoughtless, lacking self-control.

I was tired, always. Low energy, brain fog, a body that never had enough behind it. That was just how I was.

None of these were separate problems. Every single one was the same thing, showing up in a different part of my body at a different age. And every single one got explained away.

Lanie Complainy #

My dad had everyone convinced I was a hypochondriac.

I complained about my body a lot. That part was true. The explanation was wrong. I complained because my body hurt, because it failed me, because it did things that didn’t make sense. I complained because I was a kid trying to tell the adults around me that something was wrong, and I had no other way to say it.

He turned that into a joke. Lanie Complainy. Before that, it was little miss talk-too-much, because I talked early and I had a lot to say.

He had his whole family convinced. He had school staff convinced. He had my mom convinced for several years, though she hated both nicknames. She couldn’t say much. He was controlling.

My mom went my entire childhood thinking I was just blind. No other disabilities. She had the signs in front of her the whole time and no framework to read them. She’d had to give me enemas and a special soy formula. When she tried to breastfeed me, I always seemed hungry, and I hurt her badly enough that she described her breasts as looking like hamburger meat. She thought it was colic.

There were signs of autism too, and of me not being comfortable in my own body. I talked early but walked late. I crawled and walked the same day, when I was two. My mom thought it was because I couldn’t see what I wanted to go for, so she’d line Oreo cookies along the side of the couch to lure me. I cried unless I was in the swing with the vacuum running. Or on top of the washer while it was going. Or being held while my dad drove me around, so my mom could sleep.

Those weren’t quirks. That was a nervous system asking for what it needed, years before anyone had a name for it.

The word that connected everything #

It was only a year or two ago that a neurologist said septo-optic dysplasia.

I’d begun to suspect it already. The endocrine signs, the autism, the other things that fit SOD better than plain optic nerve hypoplasia. But hearing it from a doctor was different.

Septo-optic dysplasia means the optic nerve and the pituitary and the hypothalamus all developed together, wrong, from the start. The blindness and everything else were never separate. They were one thing, present since before I was born, that nobody had the full name for.

The neurologist found it. And this time, for the first time, someone kept going.

The labs #

This week, for the first time in my life, someone ordered the right blood work.

Cortisol low. Prolactin high. Growth hormone, measured as IGF-1, at 26 with a Z-score of negative six. DHEA-S at 14, when normal starts at 99.

Four separate values, all abnormal, all pointing at the same gland. The pituitary doesn’t make enough. That’s hypopituitarism.

The thirst was diabetes insipidus, or something very like it, a pituitary problem with a name and a treatment. The height was growth hormone deficiency. So was the weight I could never keep off, even without overeating, a body holding fat and losing muscle because its metabolism never got the hormone it needed. The periods that started at eight and never settled came from high prolactin and a hypothalamus that couldn’t time puberty.

The heat intolerance was low cortisol. The heart racing when I stood up was adrenal insufficiency and dysautonomia. The fatigue and brain fog that never let up came from the same two missing hormones.

I sat with the results and I started to cry.

Not because it was new information. I’d known something endocrine was wrong for years. I’d known the hypochondriac label was a lie. But knowing it in my head and seeing it in a lab result are two different things. The numbers made it real in a way my own certainty never could, because for thirty-four years I’d been taught that my certainty didn’t count.

I cried because the child who kept saying something is wrong, who got called Lanie Complainy for it, was right. The whole time. Every symptom I ever reported, every time I swallowed the doubt and stayed quiet, the blood work just came back and said she was telling the truth.

What I should have had #

I should have had an endocrinologist growing up. I should have had neurology. I should have had a team that saw the optic nerve and asked what else develops next to it.

Instead I got a diagnosis that explained the part people could see, and silence on everything else. The IIH only forced neurology into the picture because the headaches got so bad they couldn’t be ignored anymore. I had to get sick enough to be unignorable before anyone looked at the rest of me.

There’s a kind of grief in that. Not just for me. For my mom, who spent thirty-four years thinking she was raising a child who was just blind, when she was actually raising a multiply disabled child with no map and no help. She did it alone, and she did it with love, and she never got the diagnosis that would have told her she wasn’t imagining things.

The difference an answer makes #

I have an appointment with an endocrinologist in December. It’s the right place for all of this, finally. There’s a path now. A name, a specialist, treatments that might actually help.

It won’t undo the thirty-four years. But it’s a direction.

I spent my whole life being told, in one way or another, that these things were just part of me. The thirst. The tiredness. The periods that never behaved. The heat that made me pass out. The body that never quite felt like mine.

They were a pituitary that never worked right, showing up in my bones, my skin, my heart, my hunger, my growth, my blood.

And the person who knew that all along, the person everyone said was lying, was me.