Keeping Chronic Illness Real: Augustus Waters and I Share a Thought

Just in case you’re not a teenage girl- Augustus Waters is a fictional creation from John Green’s The Fault in Our Stars. It’s a somewhat cliché story of two teenagers dying from cancer who fall in love, but I must admit I actually own both the book and the movie. I liked that Green at least made an effort to make it real–some of the thoughts and feelings his young characters express were very, very real to me. I’m not sure why but this morning I was thinking about the one sentence from that book that has stayed with me for the two years since I read it–a three word phrase that Augustus tearfully repeats over and over again when the weight of his illness is simply too much.

“I hate myself.”

“I hate myself I hate myself.” He says. He is upset because he wanted to do just one thing for himself and he couldn’t. He realizes his illness has taken his independence–has taken over his entire life.

I remember once thinking those exact words. I was in the shower, crying. I’d just had a wonderful day–I got to go on multiple walks in the beautiful spring weather and I’d gotten to eat lots of yummy food. I had done normal people stuff and at the time that still wasn’t normal to me. It was a month or two after I had started being able to eat solid food again–I know I haven’t really told that story yet, I will sometime–suffice it to say I had been very sick for about a year. At the point I found myself crying in the shower I had been getting better for a couple months. I’d just had a great day and I was miserable. It all still seemed too good to be true–a normal day, the possibility of a normal life again. Every day, every second, I was terrified that it would all disappear–that I would get sick again. I was so angry at myself that I couldn’t just enjoy it all, that I was so afraid all the time. I felt so small. I thought those three poisonous little words again and again as I sobbed.

The truth is I don’t hate myself. Sometimes I hate being me. Sometimes I’m disappointed that I can’t be stronger, braver or more patient. But I don’t hate myself.

When people tell me they admire how I handle my illness I shudder inside. I think of all the moments when I have been so small, angrily crying “not fair;” I think of all the times I have looked around at my peers with envy and bitterness that I cannot do what they can do, that I will never be one of them. I try to be positive and do my best with what I have, but I’m human. Sometimes I get so tired; I become a small, weak shadow that the better part of me loathes, but here’s the kicker: that’s okay.

It’s okay to get mad, to break down, to be small.

Moments like those, they always pass. They pass for me and they will pass for you too. Once they do we pick up, we go on. Some days that’s the best we’ve got. Why should we feel bad about not being perfectly strong or patient or whatever? We’re all just lost boys and girls, trying to present our best, bravest face as we look around hoping that someone else knows what to do.

We’re all a little lost.

There was a girl I knew at school. She had to use canes to help her walk and had a hard time speaking clearly. One day in church we were talking about gratitude and the teacher asked for examples of things we are grateful for. This girl raised her hand and said “I’m grateful for my disability. I can help other people like me. I can help people better because of my disability.”

Later that week I had one of my “when it’s all too much” breakdowns. My sister saw that I was crying and gently coaxed me until I haltingly choked out what was strangling me inside, “I just can’t do it anymore. I’m so tired of being in so much pain. I can’t be like Melba. I can’t be grateful for this.”

I can’t be grateful for my illness.

Look at that, I’m no angel. I used to hate myself for it, but what good does that do? Does it help me handle my illness better? No. It makes me feel depressed. It makes me feel like it’s all for nothing–all the struggle and pain. Well if it was my choice I wouldn’t choose it–life with a body constantly breaking down–but I do know it’s not all for nothing.

What’s it all for then you may ask? Well geez I’m just a lost kid like the rest of you, how’d you expect me to know? I’m just running on faith–faith in a God who loves me and knows what’s best for me–knows what all this is for.




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