My brain is not my friend.
. . .
When things are really bad, the best thing to do is to stay awake, and the best way to stay awake is to keep busy. So I stay awake until my eyes itch, I scrub the grout around the toilet with an old toothbrush, I make a pot of coffee, and I don’t sit down. I go outside where the air is cold and I can hear the creek and see the stars. I chop wood. It’s almost morning. I can tell by the position of the moon. Time to get Little Harold out of bed and give him some breakfast. I can hold on. I can get a handle on it.
The minister who preached at my little sister’s funeral screwed up her name.
The mistake is completely understandable.
We don’t go to church. We just hired some guy to talk that day, I guess. Why would he have known?
It still gravels my dad, though. Sometimes I hear him saying under his breath, “Her name is Asta, Asta Sollilja. Not Ashley.”
I thought of that at Esther’s funeral.
Mostly, I try not to think about Asta. It’ll never heal if you pick at it. That’s what I think. But it was unavoidable today. There were too many memory triggers.
. . .
Esther’s funeral was held in the same place as Asta’s. I think the same dust was on the woodwork. The same air was in the room. Last winter we sat in a little, secret space near the front. We were very near the shiny, white box where Asta was hidden. It was just the four of us in that little space. Now Esther’s family was sitting there, behind a sheer, dark curtain that kept them separate. The curtain hides them from prying eyes. It’s a trick of light—or something about the angle of vision. I didn’t know we were hidden when I was sitting there myself. It never occurred to me.
But now I’m outside. I understand that it has a purpose. The rest of the funeral audience can’t see through that curtain. In that little room, you can have your grief in private, as long as you are quiet.
. . .
It surprises me to hear the minister at Esther’s funeral say he didn’t know her, since that family is religious. I wonder if they just picked his name out of the phone book. That’s how we did it. Found a minister, I mean. I guess they are like gyppo loggers, just waiting for the chance to work.
However it happened, the guy talking today admits he didn’t know Esther.
Then he launches into his stuff about how unprepared we are for someone so young to die. I give him some points for honesty, though not many. I felt like he was suggesting that it would have been easier if death was a scheduled event. Speaking from experience, sometimes we do expect someone young to die. Sometimes we have years of preparation. And it still hurts.
I give him some points for style. He tosses in a couple of nice metaphors, I notice. But he probably isn’t sticking to the Bible as much as Esther’s dad would like.
Esther’s dad is a minister. His whole congregation is made up of his family. I haven’t heard him preach, but he is known to be a strictly By-The-Book kind of guy.
It was impossible to know if he is angry with the pinch hitter at the pulpit. The sheer curtain—it really works. When you sit back there, you can see out. Things look a little gray, but you can see everything. From out here, nothing.
. . .
I wear the same dress for Esther’s funeral that I wore when we buried Asta. The black wool sleeves are so tight I can’t bend my arms. I shook it out before I put it on, but it still smells like the dust in my closet. The thread in the seams is stiff and pokes me up both sides and makes my armpits red and rashy. It fit better when I wore it that winter, but it was never comfortable.
It is a perfect dress for the job. It puts me in the right frame of mind, almost. It makes me uncomfortable enough that I look like I am sad.
. . .
Reba is here for the funeral too. She waves, but I don’t wave back. I hope she figures out that it isn’t personal. It’s not like we are at the mall or something—waving at a funeral is just a little wonky.
Reba isn’t wearing the right kind of clothes. She’s got on a black dress too, but it’s an LBD with sheer black sleeves and glittering beads that would attract magpies if she stood by the side of the highway.
Two things attract magpies: sparkly stuff and road-kill. This particular funeral is a jackpot for magpies. I can’t share that with Reba.
A funeral is not a social event. A funeral is not a place for jokes.
Besides, my parents aren’t letting me mingle and talk to anyone, much less Reba. The three of us just sit in the back row of chairs. We aren’t close friends or family of the deceased. We are just here to pay our respects.
After the funeral, we don’t go to the cemetery for the actual part, the part where there is a hole in the ground.My parents and a bunch of other people who are paying their respects clump together in the parking lot of the funeral home.
“. . . the flowers—a little over the top. The florist probably gave them the hard sell. The kind of people who will take advantage of grief.”
“. . . and it’s terrible, just terrible.”
“The driver is off the hook. It was a blind curve. He admitted he’d had a beer, but he wasn’t going fast and the blood alcohol was way below the limit . . .”
“. . . just ran into the road in front of him.”
Somebody had heard from somebody who knew somebody at the hospital who overheard that she was about eleven weeks pregnant.
“That family . . .”
“If she was pregnant, that’d explain it.”
“Still, it’s tragic, just tragic. And your heart goes out to that family . . .”
“That family . . .”
. . .
I don’t like the thought that someone can go rummaging around in a body and tell all its secrets.
I know it happens.
I don’t like to think about it.
I don’t want to know if they did that to Asta.
All she had left was her little body.
Her little red hands with the scars where she chewed on them.
She didn’t know they were her hands.
Or maybe she did.
Maybe it was just another sheer black curtain, and she could see out, but we couldn’t see in so we didn’t know she was there.
I want to believe she was gone way before the end.
I hope she was never really in the hospital. I hope she never felt the infection around the feeding port where we could squirt the food right into her stomach after she forgot how to swallow.
I hope when she mewed and mewed after we brought her home, it was just something her body was doing and it wasn’t Asta.
I hope she wasn’t scared or hurt when her heart stopped.
Please, please, please, it wasn’t Asta anymore.
. . .
I saw Esther’s family get into a big black car to go to the cemetery.
There were a lot of them. Her mother, her father. It was hard to tell which of them was the strong one and which one was blind with crying and ready to fall down. Then the kids like stairsteps: Faith, Abel, the missing step in the family where Esther used to be, Naomi, Ruth, Hope, and Gloria. There were even Faith’s two kids: a toddler and a little blanket-wrapped bundle. There were enough to fill that big black car.
There weren’t so many of us. The day of Asta’s funeral, it was just Mom, Dad, Little Harold, and me in the shiny black car following the hearse. Little Harold was kind of big for it, but Mom pulled him onto her lap and cried in his hair. Little Harold was crying too. I think he was just upset that Mom was crying, but he might have been starting to understand what was happening. He was only seven then, but he’s a smart kid, Little Harold.
. . .
Mom was pregnant with him when we started to lose Asta. We didn’t know that then. She was disappearing from the inside out. We thought we were all good. When Little Harold was born, Asta was in the world. By the time he could talk, we knew she never would. His world has changed more than all of ours.
I think I might be the on
ly one who can even think that Little Harold’s world might have changed in a good way.
. . .
Asta was such a good baby. It wasn’t just that she was pretty. Lots of little girls are pretty. She lived up to the name Dad found for her in a story he was reading—Asta Sollilja. It means “pretty sun lily.”
She was a sunny baby. Complete strangers would stop what they were doing to watch her smile. As for me, I was desperately proud of her. She was my Asta too.
She didn’t like her toys so much. That was all.
She was still warm and round, and I loved it when she would hold onto my thumb or finger.
I got to take care of her quite a bit after Little Harold was born. She was my living doll. I loved to dress her and fuss around with her hair. She never tried to get away from me. Now we know that might have been a sign, but we didn’t know then.
Then one day, Mom took her along on a well-baby appointment for Little Harold. Little Harold was doing great, getting bigger and stronger every day. He was hitting every one of those “Your baby should be able to . . .” checkpoints.
For Asta, though, things looked a little different.
It is odd she stopped crawling.
Nothing big. Nothing to worry about yet.
It is odd she won’t look the doctor in the eye.
Nothing big. Nothing to worry about yet.
It is odd she won’t reach for the little flashlight.
Nothing to worry about yet.
Wait until the tests come back.
It is probably nothing.
Every baby has her own schedule.
What a pretty smile.
The doctor didn’t even tell my mom what she was looking for when she ordered the tests. The doctor didn’t tell my mom because she didn’t want to find the little messed-up genes hiding in Asta’s blood sample.
Doctors have to do a lot of things that are terrible.
When the nightmares started, my parents said they would pass. Everyone has bad dreams. By April, though, my parents thought it might not be passing. My screaming in the night was making everybody edgy. So I started going to grief counseling at the clinic.
It was useful. The first day I went in, my mom made sure everyone was clear on the project. The insurance would pay for six visits. The plan was to get me fixed up in six hours or, if that wasn’t quite possible, to make me stop screaming in the night.
. . .
The first visit I learned that there are some responses to grief that are pretty common: Denial, Anger, Bargaining, Depression, Acceptance.
It isn’t like baking a cake where you follow the recipe and get it done:
1) Heat the oven to Denial
2) Prepare the pan with a spray of Anger
3) Mix in two medium-size Bargains with The Bony Guy
4) Add 1/3 cup of Depression (tears will do if you want low fat)
5) Bake for 35 minutes, or until you can jab a toothpick in your arm and it seems Acceptable.
It isn’t a recipe. Some people only experience a couple of those things. It isn’t a recipe, but it worries me.
The way I see it, we were in denial for years. The clock started when we got the diagnosis: Rett syndrome.
It’s a genetic mutation.
If genes are the assembly manual for a person, there were pages missing from Asta’s book. While she was a baby, we were still in the earliest pages, the first little modules were in place, and everything seemed fine. Then, when it was time to bring more of the assembled pieces together, some important pages were missing. Without those pages, things start to fall apart. She stopped trying to stand up. She stopped crawling.
The doctors told us what to expect: Her body will grow, but it will never be hers. She will not walk. She will not talk. She will always wear diapers. It may become harder and harder for her to swallow.
It doesn’t matter. She is still our Asta. We know how to take care of our baby. And we are going to do whatever it takes as long as it takes.
And maybe science will catch up. If we can only hold on long enough, the missing pages might be found. And we can help her start over again.
But science didn’t catch up.
. . .
After all those years of fighting hard, we lost. Now we get drunk. We hit each other. When the truck won’t start, we punch the windshield so hard the shatterproof glass breaks. Is this depression or anger? Are we going to spend ten years or twenty doing this shit?
And what about bargaining? Did we just miss that part? Or maybe Mom and Dad were striking bargains all the time with The Bony Guy. Then, finally, they were all out of chips. Asta died. The Bony Guy always wins. He doesn’t even cheat. Nothing up his sleeve but his radius, ulna, and humerus. Nothing funny about that, ba-dum-bump.
. . .
On the second visit to the grief clinic, I talked about a dream:
I’m at the grade school and there is a dance in the room where we had rummage sales and showed movies and played dodgeball. The lights and windows have wire cages over them so when we throw balls at each other with lethal force we won’t break any glass.
But we aren’t playing dodgeball in the dream. It is a dance. Or maybe it is more of a cakewalk to raise money for the school. There is a circle of chairs, and they are all empty. The music starts and there are only two of us—just me and The Bony Guy dancing to the music.
It must be Halloween, because I am wearing a mask. So is The Bony Guy. He is a good dancer. He is a better dancer than I am and I’m going to lose the cakewalk. It is inevitable.
The music hasn’t stopped, but I sneak out into the hall and then I push through the door into the playground. The moon is shining on the chains of the swings. I run across the road as fast as I can. The Bony Guy is smart and he will notice that I’m gone soon.
I cross a little creek. There is a board over it to make it easy. I could go to a house but I am sure The Bony Guy would know to look in there so I keep running. But then I see Asta. My dream-Asta is sitting by the water washing carrots. She looks like Little Red Riding Hood. I guess that is her Halloween costume. I try to tell her to run. The Bony Guy is coming. She has to run. Doesn’t she see? She just keeps washing the carrots.
I give up and run away but I don’t run far. There is a barn, a big old barn made out of squared logs with little tiny windows. There is a buffalo skull hanging over the door. I think it is hopeless to hide. The Bony Guy can find me if I hide. I need to keep running.
I know all that but I pull the door open and I try to hide in the barn. I find a window where I can watch Asta by the water. I see her. Then I blink, and she is gone.
The next time I blink The Bony Guy is standing beside me. I’m not scared. I’m just so tired.
And when I woke up, I was still tired.
It isn’t the sort of dream people have when they finally get to magic-happy-acceptance land.
. . .
My very favorite thing I learned during counseling happened during my fourth session.
I was talking about my dog, Ket. I don’t know why. Maybe the clinic counselor liked dogs, and I saw a little flicker of happiness on her face when I mentioned mine. Counselors don’t tell you much about themselves. That is part of the therapy bargain.
Ket was great. He used to sit by Asta and just let her crazy hands do whatever they had to do. Sometimes her hands would go bonk-bonk-bonk on the top of his head. Sometimes her hands would pull out some hair. That dog was always patient and let it happen. Ket was such a good dog.
On winter nights, Ket would manage to get us all in one corner of the living room. He would just kind of lean against your legs until you budged. He was so patient. First, he would budge one of us in the right direction, then another of us. When he was done, we would all be together. Asta would be in the middle, and we would all be together. Then Ket would sort of flop on the floor and grunt like it had been hard work but worth it.
“Border collie personality disorder!” the counselor giggled. “You have b
order collie personality disorder! God! Don’t tell anyone I said that!”
I wouldn’t have told, but it is true. I do have border collie personality disorder. I would like to get everyone into one corner where I could keep an eye on them and then I could take care of them.
I’m not proud of it. It is a mental disease.
. . .
I give the clinic counselors credit for doing what could be done. They let me know it wasn’t the end of the world. They told me I could work through it. They gave me what I needed—like a sleep guard to protect my teeth so I didn’t grind them into bits. They taught me how to watch out for triggers—like the smell of Betadine. Then, when the six weeks were up, I said I was better. They did their best. I did mine. They said I should keep talking. They said that writing was also good, if I didn’t have anyone to talk to. It didn’t have to make sense, they told me. Just write like you are talking to someone who wants to listen. They told me to get lots of exercise. Finally, they offered me a prescription for antianxiety meds, but my mom said no to that.
I don’t scream in the middle of the night.
I’m not sure that the clinic counselors would approve of my methods, but I don’t scream in the night. I get exercise and I am writing, like they told me. But I do some other things too. When I have to, I stay awake all night and clean the bathroom grout.
And when I can get my hands on it, I drink. It sort of shuts things down, but it takes some care to reach the perfect level without getting sick. Then, when the depressing effects of the alcohol wear off, I wake up in the middle of the night, and it’s almost impossible to get to sleep again. It isn’t always easy to get anything to drink, so it is only an occasional solution. It’s nothing I can rely on.
The Freak Observer Page 3