I’m twelve, and money is tight. Dad’s in seminary and working maintenance part-time. There’s no such thing as frivolous spending.
We only get presents on our birthday, Christmas, and Easter, so imagine my terror when Dad comes home on a random day with a smiling porcelain dog. He saw it and thought of me.
Why would he buy me this knick-knack?
Obviously, because I’m dying and he just doesn’t want to tell me.
I’ve already seen all the doctors who couldn’t help me. I’ve already taken all the pills that didn’t work. The migraines keep coming. When a migraine isn’t there, my stomach still rejects any food I manage to get down. I’m too thin. Too sick.
But the neurologist said it probably isn’t a brain tumor. Not definitely. Just probably.
It’ll always be with me. This idea that I’m dying. That I don’t have enough time.
Over the next few months, I improve. I stop vomiting every morning. I go weeks without a migraine. Then months.
It’s done some damage, though. They say my growth was stunted. My little sister’s taller than I am now, and I’ll never catch up.
We move to Oklahoma. I ride my bike around our neighborhood. I make friends. We find a church we like.
Mom gets the flu, and it never goes away.
We don’t know what’s wrong with her. We don’t know if she’ll get better. We don’t know if she’s dying. We don’t know if it’s genetic.
Turns out, it’s genetic.
Fourteen is old enough to walk down to Burger King with your sister to get dinner. Fourteen is old enough to take care of yourself after school. Make your own snacks. Do your homework without being told. Vacuum the living room floor. Wash the dishes. Get to bed and wake up on time. Operate without direct supervision.
But don’t try watering the plants above the sink with the sprayer. You think you’re being efficient and Dad will applaud your genius move and give you a high-five, but you’ll just get everything on the shelf wet and he’ll yell at you and say, “You’re smarter than that!”
Because we’re all too stressed out for a wet shelf.
Who’s going to clean up this mess? Mom can’t. Dad’s working.
It’s you. You are going to clean up this mess.
Sometimes Angela and I sit outside in Dad’s Subaru. I pretend to turn the locked steering wheel. “Where to, Miss?”
I “drive,” so Angela gets to pick where we go. She usually wants to go to Wal-Mart, but sometimes we go to Indiana. We have adventures.
I talk about getting my driver’s license in two years. Driving means driving away.
Nobody’s home when we get off the bus. Dad has taken Mom to another doctor.
We move both couches to the edge of the living room and do cartwheels across the room. We turn the TV up louder than it should go. I crank up my Tom Petty CD and finish my Algebra homework.
When they get home, we can’t be loud. Don’t slam cabinet doors. Don’t turn the TV up. Don’t knock on the bedroom door when Mom’s in there. And she’s almost always in there.
Friends and co-workers will complain about how quietly I walk when I grow up. I sneak up and scare them, but I don’t mean to.
“Dammit, Kristy! I didn’t even know you were there.”
Dad has a good job, but he has a pastoral call he’s not following. If he was a pastor, his schedule would be more flexible. He could take up the slack. We don’t understand what a time suck needy church members are.
We move to Arkansas.
A doctor listens to Mom talk about all the pain she’s in and prescribes watching funny movies.
Mom’s trying a lot of things to get better. Not the funny movies, though. We already watch funny movies.
Dad’s working two jobs because the church position is technically part-time.
Angela and I watch PBS at night because it’s the only station that comes in.
We pray for Mom, but it doesn’t work.
We pray harder.
Sometimes she has a few good days in a row. She tells us God has finally answered our prayers and healed her.
She’s back down in a week.
I think God might want something in return. I scrub the bathtub with a toothbrush as a sign of my devotion and pray again.
It doesn’t work.
I stop praying for her.
Someone from our new church ties a bag of vegetables to our front door.
Someone else drives us to school in the morning and home in the afternoon.
Someone else asks me how school’s going.
Someone else tells me to go first in the potluck line.
Someone else makes an extra plate for me so I can have dinner with their family.
Someone else invites me on her family’s outings.
Someone else takes me to see a movie.
Someone else gives me money to go on a mission trip.
Someone else signs a birthday card with her name and “mom” right behind it.
Mom’s up. Mom’s down.
She drives us to the mall one day, then she’s down for two weeks to recover.
For a couple of weeks, I see her every day when I come home.
For a couple of months, I only see her long enough to say five words.
She’s usually up when I’m not home or when I’m asleep. Our schedules seldom overlap.
Bills have to be paid. The house has to be cleaned. We have to eat.
Angela takes over the checkbook.
I take over grocery shopping and cooking, even though I can’t cook. We eat a lot of ravioli.
I dust the coffee table by swiping a throw pillow across it. I’m found out when one of my friends jokingly throws that pillow at another friend and creates a cloud of dust upon impact.
When I need to talk, someone’s always around for that. A friend. A boyfriend. A church member.
When kids ask, I tell them my mom’s sick and leave it at that. It’s too complicated to explain. I can’t tell them what she has because we don’t know. I can’t tell them she’s dying or she’ll be OK because we don’t know. I can’t tell them our life is always this way because it isn’t. Sometimes she’s mostly OK. Sometimes Dad has to carry her across the hall to the bathroom because her legs won’t work.
We see that, and we’re expected to ignore it and get our homework done.
Angela gets her homework done. I don’t always.
I’m seventeen. Mom knocks on my bedroom door. She tries to lecture me. I tell her I’ve done just fine without a mother for three years and I don’t need one now. She can’t just be sick for so long and then think she can tell me what to do when she happens to be up for a few days. I know I’m being meaner than I need to be, but I don’t think it’s fair I’m expected to adjust back and forth between being independent and being told what to do, based on how she’s feeling that day.
We both know grounding me won’t work. How could they enforce it? It didn’t work well when they tried it with my sister. Dad’s always gone. We just wait for Mom to take a nap and come back before Dad gets home. Nobody knows where we go or what we do unless we want them to know.
But we’re good kids. We’re not sneaking out to party. We just want to be out. We just want to be not here.
Usually, we go to my sister’s boyfriend’s house. We make macaroni and cheese, drink Pepsi, and watch R-rated movies. I’m the rebel of the group because I don’t measure milk when making our dinner. I just eyeball it, and that drives everyone else crazy. They officially ban me from making mac and cheese.
I write a research paper about chronic pain because I want to understand.
I get an A. I tear it up and throw it away.
One morning, I get out of bed and I don’t feel right. The world doesn’t seem real. I can’t tell if I’m awake or asleep and that scares me.
I walk down the hall and into my parent’s room to tell Dad I think I should stay home.
He’s just starting to yell at me about how much school I miss when I pass out and hit the box fan on their floor.
My heart races when it shouldn’t. It flutters. I pass out sometimes.
Mom passes out sometimes too.
My doctor straps me to a heart monitor. Mom lets me stay home that day and we go shopping for my prom dress. I try on dresses over the wires. We laugh about it.
My heart doesn’t do anything strange that day.
I never see a cardiologist. My doctor thinks I’m just stressed out because it’s my senior year, but I’m not stressed out. I’m happy. Everything’s working out.
I’ve finally let go of this idea that I’m going to die young. I’m going to have a long, normal, happy life. I’m almost free.
Then a man decides I am going to die young and everything falls apart.
For a while, I don’t care if I die, but it passes.
I start bonding with some girls in my dorm when I ask one of them to cut my hair. We’re having a good time until I pass out and scare them. They don’t want to hang out with me after that.
A boy gets in my way and everything falls apart again.
I triple-dog-dare death.
I get married.
I have a baby. She has some problems.
Our electricity gets knocked out when she’s a few weeks old, so we head to a hotel. She has a check-up scheduled, so I’m bathing her in the hotel room sink. I accidentally hit the lever on the facet and splash her with cold water. She startles, but doesn’t cry. She just looks up at me like, “Well, that wasn’t pleasant, but I’m sure you had a good reason for it.”
I won’t die.
I have another baby.
I won’t stop bleeding.
They inject me with something.
I won’t stop bleeding.
They’re pushing on my stomach.
I won’t stop bleeding.
They look worried.
I’m about to pass out.
I will not pass out. I will not.
I will not die.
The next day, my doctor sighs in relief when I tell him we don’t plan on having more children.
Something is wrong with me.
The migraines return, but I don’t have time for that because my daughter’s heart surgery is coming up.
I work all day, then come home and take care of the girls. After dinner, I disappear for an hour to do homework. After the kids are in bed, I do the rest of it. Then I stay up most of the night reading about my daughter’s heart condition.
I keep seeing it mentioned alongside connective tissue disorders.
I look at the list of symptoms. My daughter matches enough of them for a diagnosis.
So do I.
I’m 29 and it’s the first time I’ve heard of Ehlers-Danlos Syndrome.
We see two geneticists. My daughters have it. I have it.
Both of my parents have it, though my dad isn’t affected by it much. Women tend to get the short end of that stick.
Mom is diagnosed 20 years after she first got sick.
Mom was 33 when she got “the flu” and went down.
I’m 32 when my migraines and joint issues get so bad I have to quit my job.
I try not to talk about it in front of my kids, but I can’t hide it when I’m throwing up all day. It scares them.
I run the water in the bathroom so they won’t hear me throwing up, but they still hear me.
My daughters ask if they have what I have. I say, “Don’t worry about it.”
I don’t know how much I should tell them. I don’t want them to be scared.
I know what it’s like to have a parent with a chronic illness. I know what it’s like to see your mother in pain and not be able to do anything about it. I know what it’s like to resent her, and then feel guilty about it, and then emotionally detach because you don’t know what else to do.
I know what it’s like to lose your mother without losing her.
How do you mourn someone who isn’t dead?
I overcompensate. My kids don’t do as much for themselves as they should. I don’t want them to be independent too early.
I’m not down as often as my mom was, but I’m down too much. It’s hard to be a consistent parent when you never know how you’ll be feeling the next day. I don’t make promises. I say, “We’ll try to…”
I’m hopeful my girls won’t have these “down days” as adults. There are some new treatments on the horizon that might even put me back in the game in the next couple of years.
I don’t pray for healing. I don’t bargain with God by scrubbing bathtubs.
When something important is coming up, I pray I can hold it together long enough to get through the event. Sometimes I can. Sometimes I can’t.
I don’t know if I should hate EDS or not.
I was running at full speed. If you run at full speed, you don’t have time to deal with any of your issues. Survival mode can be addictive.
EDS forced me to slow down and catch up with myself.
I want to throat punch all migraines. I hate them. I hate how often they creep up on me. I hate that they force me to live day-to-day without making long-term plans.
I hate that I can’t do all the things I want to do. I hate that I go to sleep every night not knowing what I’ll be able to do the next day.
But I feel more like myself now than I have in a long time.
I wouldn’t have written Act Normal if I was still working a traditional job. I never would have made the time or risked my professional reputation on something like that.
My body has freed me as much as it’s caged me.
Having an invisible, rare genetic disorder is complicated.
Being raised by a parent with a chronic illness is complicated.
Parenting with a chronic illness is complicated.
Parenting children with the same condition you have is complicated.
My bad days are really bad, but I’m more at peace with myself on the good days.
Honestly, I don’t know if it’s worth the trade-off.
Image: Joseph King (Creative Commons)