second semester art school rambling

I am listening to a Spotify mix called "sunshine", which includes "Walking on Sunshine," "Brown Eyed Girl," "Bette Davis Eyes," "Heaven is a Place on Earth," "I Can See Clearly Now," and "Build Me Up Buttercup." I need this today. It's just been a shitty, shitty week. Second year is kicking everyone's ass, and yesterday one of my guy friends who's really funny - after our reading at an art gallery last semester we wound up at a pizza place at like one in the morning - he was like, "You look really, really tired today. Like especially. I'm worried." And I started crying (damn Topamax, plus the neurologist's appt), and he was like, "Want some candy?" And that solved it.

So yeah, I saw the movement disorder doctor yesterday. It was a weird visit. I went with the intention of going off all medication. The other day I was talking about it with my therapist, and I showed her my hands, and she was honest, and said she didn't see a difference. I'm glad she was honest, I don't want to be lied to. I thought there was, but that's probably just hopeful thinking. My legs shake terribly though, now, I've noticed. In the bookstore today, they were horrible. I felt like everyone could see them. Nothing helps those tremors. Anyway, she did the standard exam, she wants me to see a GI dr since I seem to have a problem with B12, so she wants to rule out celiac (although I was tested a few years ago) or Crohns. Then - THEN - she turns and looks at me and says, you know, nitrous oxide can cause low B12. I'm like, okay....She says, "Nitrous oxide is like the stuff the dentist gives you, it's in aerosol cans, stuff like that." And it slowly hit me that she was ASKING ME IF I WAS HUFFING. I was stunned. Because the Topamax makes me cry at anything, I started tearing up and said, "Are you asking me if I huff? I don't even know HOW that works. I'm 32. I'm in grad school. I don't use drugs. If I huffed I wouldn't be here trying to stop this." She said she had to ask, and on some level, I know, but still. Jesus. Fucking huffing. Seriously, I don't even know how that works. Then she says, "You might want to see a psychiatrist," because I was still crying. I looked at her, and said, "I see a therapist, but I think my reactions are normal for a 32 year old who's been diagnosed with a progressive neurological disorder. I don't think they're pathological or problematic."
She referred to the tremor as benign essential tremor and I actually interrupted her (I was in no mood yesterday) and said it's not benign for the person who has it, not at all. It was a really odd visit. I think they don't know what to do with me. I asked about deep brain stimulation (DBS), and she laughed. She gave me the name of the NYU surgeons, but I want to check out Hopkins, who like, pioneered it. It has an 80-90% success rate. They put electrodes into your brain and a pacemaker-like thing near your collarbone that sends messages to the electrodes that help stop the tremors.

You KNOW that when someone is practically begging for brain surgery, they're hanging on by only a few threads.

Right now, those threads are my family, especially my wondrous nephew and my niece who will join us in July. Those threads are friends who text me at just the right times. Those threads are books. Those threads are songs like those on the playlist "sunshine."

Nine years ago, a former therapist/now a mentor was diagnosed with breast cancer. I was devastated and felt incredibly helpless. But I didn't get that feeling from her. She said something to me that I repeated to myself during her treatment (and she is now in remission, thank G-d). She said, "I can't control what happens to me. But I can control how I react to it." Amen.

So. This situation sucks. I've cried almost every day about it. I'm frustrated over simple things and feel like a freak sometimes if I'm handing money over to a clerk and it's shaking like I have Parkinson's. But I had bracelets made. I'm selling them. I'm raising money for research. I'm taking control of my own treatment plan. But it's hard, I'm not going to lie. It's frustrating. Dr.Jimmie Holland, a psycho-onocologist from Sloan-Kettering (and my idol) talked about the "tyranny of positive thinking," - that if you had any negative thoughts, you were a "bad" patient. I think it's all part of the process. Like the cycle Kubler-Ross developed. Because a part of you, a part of your life has died. So I am controlling how I react to the things in my life.

Anyway, it's the final stretch and I can't believe it's over. I did it. Well, not yet. Thesis looms, and I have 3 years to do it. I hope i get the teaching fellowship. Then I can get my MFA - Mother Fucking Artist. No, it's really Master of Fine Arts. But I like mine better. I never thought I would call myself an artist. Or see myself as an artist.

And you know what? For all the debt I have - and it's six figures worth of debt, just like everyone else in my cohort - I don't regret it. I got to talk to Mary Karr last night. I talked with Oliver Sacks. Margo Jefferson was my workshop instructor. I went to a lecture by Zadie Smith. Deborah Eisenberg and Richard Ford are common sightings in the office. And they're friendly, normal people.
On my deathbed, I won't regret a thing. So for the anonymous person who writes mean-spirited comments which is why I had to moderate them, I am living my life to the fullest. Trying not to have regrets. Checking off my bucket list. All the things I've tried and failed and loved and hated have brought me to where I am now and made me who I am. And I'm happy with that. Can you say the same?