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.