What I remember most about my childhood are the bells that would ring every Sunday morning. I could never quite make out what hymn they were playing, or recall the name of it I mean, but I could hum the entire song while they chimed. Blame that on the hymn book being beaten into my memory since I was barely old enough to mutter a gurgled “Jesus Loves Me.” But I remember walking to church, humming. Sitting in the pews, humming, because I was too embarrassed to sing. Always, humming, never singing. I wish now that I had sang.
I ring the bell and hear the answering sigh from the other room. That’s about the only conversation I get from my family anymore. Sighs and groans of frustration and a couple eye rolls thrown in here and there. They all mock me, mimicking my hums in high pitched tones. Just because I can’t talk anymore, they think I’m too dumb to realize when they do it. And just because I can’t walk, I get treated like I’m a chore. When my daughter walks in the room rolling her eyes, I want to roll my eyes back at her and tell her I just need the freaking fan turned up a little. I catch myself though before I do and realize that adults probably shouldn’t do that. So I barely stick my tongue out at her instead, which, I guess, I’m too old to be doing too. But I push that thought aside as the scowl that’s almost always on her face disappears as she lets out a lighthearted laugh. For a few seconds, I get my little girl back.
“What did you need?” When she asks me that, I almost can’t make myself point to the fan. I hate the act of just jabbing my finger towards what I need like I’m some sort of overgrown toddler demanding a sippy cup or a stuffed animal or an overdose of attention. But I point anyways and she simply turns the fan up before leaving the room again. I glance at the worn wheelchair, that is doing me absolutely no good sitting on the other side of the room. It’s sad that I can’t even walk a few inches to turn up the fan.
I keep working on my computer for another half hour, typing up a poem I know that I will never show anyone. My daughters always ask why all my poems are about God and I told them that just in case I die soon, I want to make sure I’ve built up plenty of points with him. Really though, I keep writing because it is the closest that I will probably ever be to words again.
When I am finished with my poem– more like when I’ve gotten too angry at it to mess with it anymore– I look up how to say ‘fan’ in sign language and I’m surprised with how simple that sign is. Yes, this is one I can remember. Rare, since my mind has been betraying me lately too. All you have to do is hold up your pointer finger and spin it in a circle above your head. Even though it’s easy, I try it a few times, spinning my finger in time to the video on the screen. I laugh a little at how much that sign represents my life right now. The daily cycle of waking up, eating, sitting, typing, and sleeping is enough to drive anyone crazy. But that is the cycle I am stuck in right now, which might be why I can’t control the laughing once it starts.
How did I get to this point? Like, what decided my fate would be getting stuck in a wheelchair starting at the age of thirty-five? What, after I go on vacation and I’m the one a random bacteria decides to infect? Me out of everyone else? What decided that I would lose my ability to speak at the age of forty-one? Why, just why… I think I ask that more than the people that dare to come up to me in public and ask what happened. All I know is I didn’t get a say-so in the matter.
It all started in 2011, after returning home from a vacation to Walt Disney World. One morning I woke up and tried to get up out of bed, expecting to just walk to the restroom as usual. Instead, I found myself face down on the floor as soon as I pushed off of the bed. My legs wouldn’t move, not even the slightest twitch. It’s like my brain didn’t understand that I was asking it to move my legs. That was the most terrifying moment of my life, because I didn’t know what was going on or where to go from there. Or how to go. How to go was the hardest question to answer. I had lost my voice that week and was unable to tell anyone I needed help up, that I needed to go to the restroom. So, until someone finally woke up, I was forced to lay in the floor. Sadly, by the time they did, there was no reason to go to the bathroom anymore. It was that way for the next few days. Each morning, I would try to stand up, only to fall again. My family begged to take me to the hospital but I have always been stubborn, so I kept refusing. I told them I was fine, that I was probably just over exhausted from our vacation and that I just needed rest. After all, this wasn’t the first time this sort of thing had happened.
Three days later, after laying in my own feces and urine every morning and being unable to stand to take a shower, I had a whole new perspective on what it must feel like to be in a nursing home, only being able to wait until someone noticed you needed help. After the third day, I couldn’t take it anymore and went to the hospital. Nothing was concluded. They couldn’t figure anything out. I prayed to God every day after that, asking him what was happening to me, what I did to deserve this, why he hated me. I always took that last part back every time. Growing up in a southern church, you didn’t ask why God hated you. You just assumed you deserved what you got and repented of sins you weren’t even sure you had committed. So that’s what I did.
The next week, I somehow recovered, if only slightly. Enough to use a walker instead of a wheelchair. This was a big accomplishment and I truly thought I had been right and I had just needed more rest than usual. A few months of using a walker allowed me to attend my mother’s funeral and walk up to her casket to stand by her side. She had been in wheelchair most of her life. I stood there weeping.
By the next week, I was back to not being able to stand at all. After that I spent months in and out of doctor’s appointments, trying to figure out what had happened and by the end of the year, they had figured it out. At this point when people ask what happened, I don’t have to use up the extra brain power to explain, because I have the script memorized as well as I have had the Lord’s Prayer beaten into my memory. A virus attacked my nervous system, leaving me paralyzed from the waist down. I have been unable to walk for nearly seven years, confined to my mom’s old wheelchair. More recently, when I lost my voice, I went through the same process of waiting to find something out, only to find out that once again, my nervous system had been attacked by a virus and that they were ninety-nine percent sure that I would never speak again.
So far, they have been right.
Now I struggle for words, but it’s not that I don’t know what they are. It’s just. Nothing. Comes. Out. Since I have never had the need before to learn sign language, I am only learning one phrase at a time and only as I need them. When I go out now, I can’t say the script I memorized because no sound comes out. I have no way of communicating my feelings or needs, and let’s face it. People are pretty much awful at reading lips. So when I say “can I go” and it sounds like “tomato”, things can get very odd. It all gets very frustrating.
When I can’t even do simple things, like turn a fan up, it is pretty hard to stay positive. But all I can do is take a breath and think of my mom, how she was unable to walk for the majority of her life. Yet she still managed to live a full life. So I stay as positive as I can. At home it still isn’t easy, but my family and I are slowly adapting and developing our own language, a mix of signs and reading lips and random hand gestures that would probably quickly earn us a trip to get a mental evaluation if someone saw us repeating them in public. Despite getting frustrated sometimes, I like our odd language and I like learning new signs. The first two I learned were “bacon” and “Jesus.” My daughter likes to joke with me and say she can see what my priorities are. She doesn’t realize yet that I just liked the flow of those signs, the act of making them, the fluid motions. It’s almost like speaking and having the words roll off of your tongue. And when you watch a professional sign things? My god, it is possibly one of the most beautiful languages that exist.
When I first lost my voice and my ability to walk, everything felt so hopeless. Sometimes it still is and it seems like I’ll never be the same. But maybe that’s okay. Most of the time though, I feel like losing these abilities doesn’t mean I have to lose myself. This just gives me the opportunity to find different ways to express what I need and what I am feeling. Signing can be just like speaking and stillness can be a wonderful thing. I am going to be able to do this. I can find my words again. Most days, I am hopeful of this. Today is one of those days. So when my husband walks into the room a little later and sees me, I sign the first full sentence I ever learned in sign language to him. I love you. And when he smiles and signs it back, I am able to see the world as one of possibilities. I can do this. I know I can.