Thursday, September 19, 2019
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Thoughts and Prayers

I’ve prayed for a lot of things in my life that range from trivial to weighty: great friends in college, health for my family, a functional soft-serve ice cream machine in the dining hall, a grade on a test, a sunny day, rest in my soul. There is one thing I have never prayed for, however, and that is a cure for my disease.

I realized this recently, when I was faced with the opportunity to participate in a clinical trial for a possible treatment for Spinal Muscular Atrophy – the disease that makes me delbasid. After giving it much thought, I decided to participate, when I found out the trial had been put on hold. I wasn’t devastated, as I had been a bit skeptical about participating in the first place – I wasn’t sure if it would be too overwhelming to handle on top of school and a social life. Still, I found myself a bit disappointed – I had mentally prepared myself to participate and had begun to hope that the treatment might just work, only to discover I wouldn’t be getting the drug after all, at least for now.

I prayed about it, and came to the conclusion that it was probably for the best – perhaps the trial had been postponed for a reason. As I was praying on the topic of my disease and a possible treatment, it occurred to me that I have never in my life explicitly prayed for a cure.

Why not? That is the question I’ve been trying to tackle since I had this realization. It’s not necessarily that I don’t want a cure – a huge part of my life has been helping raise funds and awareness for this disease. And as I wrote about in my previous post, having SMA can suck sometimes, and I won’t deny that. Still, I have never externally said or thought the words, “Dear God, please cure SMA.”

I think the fact that I have never prayed for a cure serves partly as an indication of how blessed I am – I am truly content with my life the way it is, which is wholly attributed to my amazing friends, incredible family, and supporting environment. I mean this absolutely, and I am sure that I will live a happy, complete life without a cure. In this sense, I have never thought of a cure as something I needed desperately, and that is an amazing testament to God.

On the other hand, I also think the fact that I have never prayed for a cure serves as an indication of the weakness of my faith. A cure for SMA seems too out there, too impossible to me (though research really does show it is near). I think that it would never actually happen – that I already know the answer to that prayer – so I don’t even bother praying for it.

Essentially, I am undermining God’s immeasurable strength and power, while simultaneously accrediting it for the contentedness that I feel with my life as it is. I think about this, and I don’t really know what to do with it, how to reconcile it. And then I realize I can’t. And that’s okay.

I’m currently taking a class called ‘Major Modernists’ – studying the great works of Woolf, Joyce, Mansfield, and Eliot. In modernism, more questions are posed than answers given – this is done on purpose in an attempt to portray the thoughts and state of humanity as realistically as possible. The class has taught me that it is impossible for us to answer every question the world throws at us.

I’ve been posed with many questions recently, both by others and from myself: Why don’t I pray for a cure? If given a cure instantly, would I take it, or would a cure take away from who I am? Are delbasidness and disease things that should be “fixed” or is that an “ableist” viewpoint?  

I’ve tried to answer these questions, and I can’t. I think that a disease is objectively bad, yet life with a disease isn’t. Again, I am left wondering how to reconcile those two schools of thought, or if they even need to be reconciled. For now, I will just give praise for the good in the world, and pray for more good in the world – whatever that entails. In the spirit of modernism, I will ask questions that I can’t answer and write down thoughts that I can’t explain. I will continue to live fully, embracing the complexities of being delbasid. And I will apologize for being annoyingly philosophical throughout this post. You can blame my modernism class.

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