as small as a world and as large as alone, I went to see The Fault In Our Stars! My...

11:12pm June 18, 2014

I went to see The Fault In Our Stars! My nighttime staff person dropped me off at the movie theater, I watched the movie, and I walked home.

I was self-conscious about all the crap I was lugging with me: oxygen tubes, feeding tubes with Osmolite backpack, drainage bag with actual blood coming out of it for some reason. I was afraid people would assume I had cancer, when I don’t. (I have bronchiectasis, gastroparesis, and adrenal insufficiency, among other things. No cancer.) So I sort of slunk down the aisle and found a seat in the corner and ignored everyone.

But really that wasn’t a big deal. Until my feeding tube alarm started going off in the middle of the previews and I had to keep troubleshooting it. Feeding tube alarms are loud in small, uncrowded theaters. That was embarrassing. But I did fix it. I just had to stop wearing it on my back, and balanced it on the seat next to me for easy access. No more alarms.

First three photos are in the car, I’m excited to be going to a movie for the first time in what seems like years. Next one is in the movie theater while I’m trying to get arranged in my seat. Final one is on the walk home.

I walked home.

I had no trouble walking home.

Okay I had some trouble walking home. This is why I have a cane. My physical therapist says that my estimate of my own balance skills is much higher than my actual balance skills. So I used the cane to balance and I only fell over once.

All the way from the movie theater to my apartment, using stairs, not the elevator.

This is an accomplishment.

This is also why I insisted on bringing oxygen despite fears of people assuming either cancer or cosplaying. (I figure the fact that I look in no way like either of the main characters would make it clear I wasn’t cosplaying, but who knows.) The oxygen helped on the long downhills. (It’s a laketown, everything is uphill or downhill.)

So.. the movie. Spoilers ahead for people who haven’t read the book or seen the movie. Also I’m going to talk about my dad some because my dad’s dying of cancer.

The book has a special place in my heart. When I was dying of undiagnosed adrenal insufficiency, I read it, and it said things to me that nobody could say to me because I couldn’t talk to anyone about what I was feeling. It meant a great deal to me then, and it still does now.

The movie was good. It was not great, it was not outstanding, but it was good, and I enjoyed going it, and I do not regret going. I do not regret going even though my father is dying of cancer. I thought it would be too much. It wasn’t. It was just like one more piece of the tapestry that terminal illness creates in our lives, and it may have helped in some ways that I can’t put words to. Especially the family scenes.

I was really, really happy for Hazel when she found out that her mother had plans for after she died. There was a time I was planning for my parents to outlive me, which should never ever happen but it does. And if I’d known they had plans, they had a life planned, things they were going to do, even things to make their experience with me into something that could help others, that would have comforted me immensely as I was dying. Luckily they diagnosed and treated me and I didn’t die. But one day I will die, and I will still have loved ones, and I will still care what happens to them afterwards.

I still find the part interesting where Hazel realizes that funerals are for the living, and says a lot of bullshit she doesn’t even believe, because she knows it’s the right thing to say, rather than tell the truth at that point. I’ve been thinking a lot about things like that. I’ve been thinking a lot about when to tell the truth, and when to tell people what they need to hear right then, whether it’s 100% true or not. My father’s situation is a crash course in what to say, to who, and when, and why.

Mostly I find myself trying to emphasize love, because I know it’s the only thing in all this that will work, that will help, that will help either the living or the dying. But sometimes I’m irritated or angry and it’s hard to be loving. Sometimes I’m scared and it’s hard to be loving. Sometimes I’m numb and it’s hard to be loving. Maybe those are the times it’s most important to at least try to be loving. Just like a friend once told me, about prayer, that the dark night of the soul is the time when God values your prayers most. Maybe love is more valuable when you have to fight your way through all the machinations of your ego, to express it. Maybe I’ll have to keep that in mind the next time my ego gets the better of me.

Anyway this has veered way out of the bounds of the movie, so I’m gonna send it for now. Suffice to say, I saw a movie, I walked home, on foot, all the way, and I’m not even tired beyond my usual tired! This is amazing. My only mistake was not to inform the people who supervise me at night, so they were kind of frantic and looking for me by the time I got home. I have to remember to alert them before I go someplace after a certain hour, or they worry that I’m missing.

ETA: my neck got really really tired and sore during the movie, so not everything was perfect. And my head kept flopping over.