Maria in Wonderland

A Sense Of Wonder

by Maria Moore Myrback

My chronic illness always gives me a real sense of wonder.

I wonder when my meds are going to kick in this morning. I wonder when I’m going to stop having seizures. I wonder if I’m going to have a good day or a bad day. And most of all, I wonder when I’m going to be better. Am I ever going to be better?

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Which medication will work? Trial and error is a process that is frustrating and miserable.

Having a chronic illness is exhausting. I wonder when I’m going to have enough energy to do some of the things I used to do. Like maybe leave the house for something besides doctor visits. I wonder if I’m ever going to get through an entire day without having to sleep so much because my meds make me feel drugged.

It's a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.
It’s a struggle to find just the right mix of medication and what works for us personally. This slow painful process is something no one is prepared for.

Then there’s the pain. I wonder when my skull will finally crack like the eggshell it seems to be. I wonder when the feeling of someone stabbing knitting needles into my brain will finally stop. I wonder if I’m going to continue having these debilitating headaches. And I wonder that if I do, am I going to have to change anticonvulsant medications. I understand from talking to others that I’ll have to be weaned off this med and then start the process of building up to the therapeutic dosage of the new medication. I’m really not looking forward to that. It seems like a form of slow torture. So I wonder if I’m ever going to get off this medication merry-go-round.

A not very fun ride, managing an illness that will never have a cure.
A not very fun ride, managing an illness that will never have a cure.

I wonder if I’m ever going to be me again. It’s frustrating as all Hell trying to figure out how to get back a sense of my normal self. I’m starting to lose hope that I will ever get back there. Three months is a long time for a newbie like me. But I know many others have been dealing with their illnesses much longer. I also know that I may never be back to my old self and it makes me sad. And angry.

Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones.  Guilt happens.
Being self centered is about survival, but almost everyone wishes to feel better so they can be better for their loved ones. Guilt happens.

I hate feeling self-centered. I get so blooming angry and my sense of wonder makes me think, “Why did this have to happen to me? I was doing so well.” I was following my dream of becoming a biologist. And now I wonder if I’m ever going to get that chance again. Sometimes I cry because I think my days of doing research with really big Burmese Pythons are probably over. And sometimes I get so angry that my jaws ache from gritting my teeth so hard. Once in a great while I even allow myself to scream out my frustration, sorrow and anger.

We all want to get off this ride....and showing our anger at times helps.
We all want to get off this ride….and showing our anger at times helps.

I wonder if I’m ever going to be able to drive again. Florida state law permits me to drive after six months of starting medication, but I’m a hazard to others. Ten seconds of having an absence seizure could kill someone. I won’t take the chance of harming others because the law permits me to drive. So there goes my dream car. I really wanted my next vehicle to be a full electric Kia Soul because I am environmentally conscious and climate change is a real thing that I don’t want to contribute to. Or should I say I didn’t want to contribute to? But on the plus side, I’m selling my beloved white Ford F150, Yeti, to my eldest son for a song. Well it’s a plus for him anyway.

Like I said, having a chronic illness gives me a real sense of wonder.

Yet again, thank you Maria for sharing what so many of us go through.  I think we wonder that so few people share what having a chronic illness feels like.  We seem to be a nation of “just suck it up”, and there is no way to “such up” such pain, both physical and emotional.  Just knowing, it’s not just me and I am not weak, I find is a help.  This is incredibly tough, and no one asks you before if you are brave or strong enough to handle it.  I hope, and I don’t wonder, that soon Maria will be feeling better.  Finding that Goldilocks medication zone takes a long time.   

Also huge thanks to Mark Roberts for the amazing photographs of Coney Island at the end of the season to accompany this article.  

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