Trey's 6th Birthday Letter

My sweet Trey,
Happy 6th Birthday, buddy. I marvel that it's been that long, because the years have flown by, not giving me enough time to let the time fully sink in so I can capture it. I look at you and see everything, all wrapped up in one body -- I see you learning to walk, talk, your laugh, pushing your stroller....and the boy you are growing up to be. I love your obsession with Dr.Seuss books, and how you will ask me to read you a story before bed. Our trips to B&N are things I treasure more than you can ever know.  Your thoughtfulness and sensitivity will make you a wonderful big brother, and your sister will have you as a role model. When I first held you six years ago, I had no idea the extent to which you would change me or my life -- I can't remember life without you, buddy -- and I was just learning what it was to love someone I'd just met, more than I loved anyone in the world. For no reason other than instinct. As you get older, I have this urge to protect you more and more, maybe because I am scared of what this world is becoming and want to shield you from hurt and harm. But I know I can't. I know you will get hurt at times in your life, and I already ache, thinking about that. But the thing is, you are resilient. Your heart is like a starfish -- it regenerates and heals itself. Your unguarded, hopeful love is perhaps one of the most beautiful things about you. Hold onto that as long as you can, even though this doesn't make much sense to you now. And know that there are so many of us around you who love and support you, T-man.
When you started kindergarten this year, your bravery amazed me. You went on a bus and went to a big school. I didn't do that at your age -- it was scary enough for me to do that in high school. But you did it, and when I visited your classroom in January, you were doing wonderfully. You are like your daddy in that way -- with some things, necessary things, you leap, and throw yourself into life. I admire that.
Your life is going to change when your little sister comes, buddy, but you're gonna be great. I know you'll be a huge help, and we'll still do the things we always do -- no babies allowed. :)  Being nervous or scared is normal, but trust me, you will be the best big brother ever. I know it.
Trey, six years ago I became your aunt, and have treasured that role ever since. You've changed me in ways I can't even describe, but I'm grateful. Grateful for all the lessons you've taught me without even knowing it. Grateful for the love you've brought into everyone's life. I can't believe it's been six years already. I love you, Trey, and am so, so happy to be your aunt.
Love,
Aunt JJ

faking it until I'm making it - again.

For as long as I can remember, I've laid my clothes out for the next day, the night before. It saves time in the morning, and in my half-sleep daze, I can just pull whatever on. For some reason, tomorrow I have the urge to wear the craziest thing -- black Under Armour nylon exercise pants, aqua Nike dri-fit v-neck, and my black Ironman thin lycra zip up that says "140.6 Miles of Awesome" on the back. That was my goal. I wanted to do a 70.3 before my 35th birthday. Maybe that's still possible, I don't know. Last year I let my Triathlete and Runner's World subscriptions expire. I just didn't have the time. I'm glad I did. Ever since the beginning of these tremors, I haven't picked up either of those magazines. No, that's a lie. I did flip through a Triathlete, and it made me too sad. I think getting out of the city will help. Once I'm back in Chapel Hill, I can go back to the Wellness Center, start swimming, biking, and walking again, and build my strength up in a place that is familiar and medically safe.

Right now, I feel like a phony even putting on a sports bra. It's hard to believe, to remember those days where I would voluntarily wake up at 4:30am, go swim laps, get dressed for the day, go to A&P lab, do freelance work, then go to class. I remember every day and night, that feeling of calm that swept over me the minute I entered the Wellness Center. Like I belonged. The smell of chlorine and sweat and muscle cream. I remember the first time hearing my knees crackle as I walked down my steps. I had to buy joint salve, the tingly kind. No one warned me that I shouldn't shave before I put it on. So not only did I smell like a pine foresty old man, but my knee areas were pretty much on fire that first night I used it.

I wore my rubber Ironman watch 24/7 - no need to take it off. My RoadID was right above it. The constant chlorine smell of my hair was comforting. Slowly, I forged tentative friendships with older people at the gym who were also in the tri club. They helped draw me out of my shyness. I had a place there.

All this is to say that wearing simple nylon sportswear is like, a big deal for me for some reason. I haven't worn any really, since the tremors started. But I miss the girl who did. I miss the girl who went running in the woods with her running group twice a week. I miss the girl who watched old Kona Ironman specials and got chills every single time. I miss the girl who, even when exercising or doing sports, coordinated her Nike outfits and preferred running skirts to shorts. I miss the sound of ground and leaves crunching under my feet as I run on the trails. I miss my running coach, Mimi, who made me think I was a runner. I miss the girl who actually, seriously considered entering the Kona lottery but didn't have the extra money to spare to sign up. I think she's still in there. I just have to find her and get her stronger. No, I know she's still in there. Because I haven't yet heard the words shouted over the loudspeaker, "Jaime, YOU are an Ironman!" But I will. If I have to crawl to and across the finish line like Julie Moss did in 1982, I will.

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?

everyone's a Napoleon.

wow. It's been a while. The last semester has been very busy, and I've taken some time to take care of myself. I've applied for a teaching fellowship here but am still applying to other jobs here and in NC, because I honestly don't know if staying in NY would be the best - or healthiest - option for me. I applied for a job at The Strand - and the rumors are true. There is a goddamn literary quiz on the application. A pretentious, obscure, eye-roll worthy lit quiz where you match up authors with their books. Authors like Gogol and Naipaul and McCullers and Ibsen. I think I got most of them, but really? You have got to be kidding me. THIS is what you are weeding us out with? There is a sign that says if they don't call you within a week of your application, there's not a spot for you there. Obviously, it's been like, three weeks, so the Strand evidently does not want me. FINE. I DIDN'T WANT YOU EITHER, SURLY BOOKSHOP PEOPLE. I like to smile at people and talk with customers, not act like I'm too cool for you and unless you're reading something totally obscure, can't give you the time of day.......like many people there seem to be. But I still go there, because the $1.99 ARCs are just unbeatable and the creaky wood floors and the smell of musty old paper makes me feel less alone and like I've found a home of sorts in this city of misery. Lately I have preferred books to people, because books don't form cliques and forget about you. Books don't act like assholes. I honestly think that even in a grad school environment, there is something about it that for some people, makes them revert back to middle school and it's like Mean Girls, redux. Using people when it's convenient for them, then casting them aside when they feel they've "moved up" in the social ranks. Fuck that, I'm not playing your game. Over it. Sometimes it is all I can do to go to class and smile and not breathe again until I go back to my apartment.

Great Expectations.

Before I start writing this, let me put a pre-emptive statement out there - especially for my anonymous friend who writes such heartfelt comments - I'd really love to address you by name one day. This is not a "poor me" pity post. Far from it. It's an "I'm kind of struggling right now with everyone else along in my cohort but that's where we're supposed to be maybe...." I'm not quite sure what it is, but it's not a pity party. That I know for sure.

Walking in the halls and sitting in the classrooms of the writing program, there are framed posters of collages of book covers of books published by graduates of the program. Seventies, eighties, nineties. Who knew that the Jennifer Aniston movie "The Object of My Affection" was based on a book from an alum? Not me. "Clockers?" Nope. Then there's the more literary ones, like the one about Rwanda, "We Wish to Inform you that Tomorrow We will Be Killed With Our Families." Then there are the quiet ones I've read and loved: "Ithaka," "The Cure for Grief," "Atmospheric Disturbances," and Alexandra Styron's book about her father. Depending on the mood I'm in, these can be either inspiring and reassuring, or they can be mocking and pressuring.
To whom much is given, much is expected. I know this well. And I usually don't disappoint. I have faith - ridiculous, blind, wondrous, childlike, full-fledged faith - that this decision was a good one. This was actually maybe the first decision in my entire life that I made completely on blind faith. And the first day I hold a review copy of my book in my hands, I'll run my fingers over the cover and remember the anguish and nervousness of finally accepting the ofer and the naysayers telling me it was a mistake. If it's a JK Rowling blockbuster, awesome. If it's a quieter, cult-like followed book, great. But no one can take it away from me. Even if one person reads it.

It's just hard to remember that when you're in the muck of reading 3 books this week that you haven't even looked at, critiquing workshop pieces and getting yours ready, figuring out what your thesis is really going to look like, applying for jobs and summer writing conferences, paying medical bills, and dealing with this damn tremor. I just have to *breathe.* In. Out. In. Out. Repeat on a continuous basis.

20 Under 40, live.

I'm taking a science writing class this semester, which I am very excited about. Each week we read a book, talk about it for the first hour, and then the second hour, the author comes and we get to ask him/her questions about writing the book, the book itself, the process, etc. Our first author came today. The book was on superstring theory and hidden dimensions and it all went over my head, but Rivka assured me this was the hardest book we'd read all semester.

Rivka is our teacher. She is one of the reasons I am so excited about the class. Besides her artist-hipster clothes that would look ridiculous on me but somehow fit together perfectly on her, she was picked as one of the The New Yorker's "20 Under 40" in 2010. Other people picked were Chris Adrian, Tea Obrecht, Nell Freudenberger, ZZ Packer, Karen Russell, Sarah Shun-lien Bynum, Dinaw Mengestu, and Wells Tower. Columbia MFA graduates accounted for a fifth of the people chosen, only surpassed by Iowa. I remember reading about Rivka in Time Out New York - she caught my eye because something about her father being Israeli maybe? I don't remember, but I do remember reading that not only did she have her MFA, but also her MD. Turns out she didn't really like medicine, but that's not my story to tell. I know they're all fiction writers, and they don't really do things like this for nonfiction writers, but goddamn, what an accomplishment, no? I remember getting off the phone with the person who called me to let me know I got into Columbia, running upstairs, and picking the book of the 20 Under 40 and thinking, holyshitholyshitholyshit. But anyway. Let me just say this: she is down to earth, very cool, but not untouchable cool. She was in school with Nellie, which is also neat. She is just one of those people whom I want to sit down and ask, how do you get this way? How do you pick out your clothes and combine them? Because I don't think I could pull it off. Her book is called Atmospheric Disturbances, and I know I read it years ago, but I need a refresher. I always like reading books that my teachers have written so I get a better sense of them.

For next week we have to read a graphic novel about Marie Curie, which should be very awesome. This is one of those classes where I realize how lucky and blessed I am, and how thankful I took this risk to be here.

shakin' it up.

I just saw the Parkinson's/Movement Disorder specialist yesterday, after months of seeing the MS doctor (who is wonderful), and they basically came to the same conclusion: it's Essential Tremor, or ET. It's getting a little worse. It's spread to my legs, which is rare in ET, but can happen. Sometimes I feel my lips tremble but I'm not sure if it's in my head. ET typically strikes the hands, then moves up to arms, head, mouth, and voice. ET is a progressive neurological conditon, and usually strikes those 65 and older, although - surprise - young people can get it, too. There is no cure. Usually it runs in families, but not in mine. Doctors are very candid with patients - tremor is the hardest thing to treat. It usually isn't effective.
The top line medicines for it are the beta-blocker propranolol and the drug primidone, both of which did not help. Now we are on gabapentin (Neurontin) three times a day, with klonopin twice a day, and we are slowly upping the Neurontin to see if that works. After that, there's only Topamax. There IS one doctor in the city, at Mt.Sinai, who can prescribe an experimental drug - Xyrem - and its active ingredient is GHB. Yes, you read that right. GHB, the date rape drug. Roofies. In small doses, apparently it calms tremors. But because it is so tightly federally controlled, only certain doctors running the program can prescribe it. I looked it up - first of all, it's over $2,000 a month. Second, the side effects don't seem worh it. So I'm not considering that as an option.

I'm not going to lie. Everyone's like, oh, thank goodness it's not PD or MS. Well, I appreciate the sentiment, I really do - but if it were one of those, at least we'd have a treatment plan. With this, we're just like, okay, up the meds, see if it works, if we add Topamax and it still fails, you're shit outta luck. At least for now.
If I sound bitter or angry, I am. Two years ago I was training for a triathlon, and now I can't even run up and down steps. I am the girl everyone goes around when walking down subway steps, because I am the one holding onto the railing and taking each step slowly. I've learned to wait until the crowd subsides and then walk down. I'm tired all the time. I can't write longhand, which I love. I mean, I can, but it tires me out and it looks like chicken scratch, which only angers me more.

So with the help of Pura Vida bracelets, I am making a custom bracelet whose proceeds will be given to the NYU MS center, the NYU Center for Parkinson's and Movement Disorders, and the International Essential Tremor Foundation. They'll be coming in in a few weeks, and if you're interested, let me know. I'll be selling them for $5 and all proceeds go to the organizations. The string colors will be purple, white, black, lime green, and gray.

Yesterday, after my appointment, I felt hopeless. Like I only had a few more chances to deal with this tremor that has hijacked my life. I went to Brother Jimmy's BBQ (which claims to be Carolina BBQ)  and ordered a beer and a Cheerwine float, along with hush puppies and pulled BBQ chicken with cornbread and fries. And another beer. And then I came home and went to the store and got Mike's Hard Lemonade. I drank three and proceeded to pass out on my bed. This is not typical behavior,  but really, what are you supposed to do? I wallowed in it for one day and now I'm taking action.

I am a person who has been athletic all her life. This has seriously impacted me. It's also impacted my cognitive abilities a tiny bit to the point where I need to take notes when I read to remember things, and whereas it used to take me a day or two to finish a book, I need all week. It is incredibly disheartening. It used to be called "benign essential tremor," but they realized that it was anything but benign. So Google it, ask me questions, buy a bracelet.....millions of people suffeer from ET, and we deserve a cure just like any of the cancers. Or at least more medication options.

Shabbat musings

Today I had a visit at NYU's Multiple Sclerosis Center. I've been going for a few months, because of this tremor and associated symptoms. I have a clean MRI but was diagnosed with an Essential Tremor. But there are symptoms he can't explain, so he is sending me to a movement disorder/Parkinsons specialist, whom I see next month.
So I'm walking to the Shuttle to get back to Times Square, and I had just cried openly on the streets of NYC on the phone to both my mother and my father, because I'm hoping this med combo decreases them and because they are REALLY bad. It's noticeable. Anyway, I'm walking and I'm sure I didn't look super happy, and I saw the Chabad people and somehow got into a conversation with one. He asked if I was Jewish and I said yes - I'm not going to lie - and we got to talking. He asked me if I light the Sabbath (Shabbos) candles and I said no, so he pressed some into my hand and asked me to light them tonight, because it's a mitzvah. He also gave me the parsha of the week. For some reason, I am taking this as a sign. I usually ignore those people. but I cannot lie if I'm asked my religion - I can't, I won't - and somehow I was reminded today of the simple joy of lighting Shabbat candles. So at 4:46pm, I will be saying the Sabbath blessing and having some challah.

Sometimes I do miss being "more Jewish." I miss not going to synagogue, and I really should read the portion of the week. There are some Orthodox traditions that are beautiful. I went to an Orthodox kindergarten and Conservative day school until high school. We welcomed the Sabbath every friday at the end of the day. I understand the modesty traditions of the more Orthodox; when I was in Israel I didn't hesitate to pull on the long gauzy skirt I bought for the occasion over my shorts, and take one of the shawls to cover my shoulders and arms. That was at the Kotel.

For some reason, I am taking this as a sign. A sign to hold onto hope and faith, and not get too discouraged. And maybe stop and light she Shabbos candles every week.

headin' back

Headed back to the city tomorrow. Mixed feelings. All I really want to do is go back to North Carolina, and I am hoping a job comes through. I can't see myself in NYC much longer - it is killing my spirit inside and out, and taking a toll on my body. I'm looking forward to classes - I have some awesome teachers, including Sheila Heti and Honor Moore. It's a full load, so it's gonna be nonstop. And then "fake" graduation and then thesis time and job time. good times. :)

And you know, people can say what they want, but I have had two years to do what I love - read and write - with the added bonus of a hefty fellowship covering much of tuition. I have talked with some of the brightest and most interesting people to me, and I wouldn't trade that for the world. Yes, the MPH was practical.....but this, the MFA....this was my heart. And it has filled me with such joy, that even during frustrating or angering times, I am always glad I took this chance. Even when the thought of the new student loan payments hits me, I try to achieve a Zen state and think everything will work out. Karma, you know?

home stretch.

Classes start Monday and already I have to finish a book for Wednesday. I would expect nothing less from this program. I'm excited for this semester - Mary Karr is coming to speak, I'm applying for fellowships and jobs, it might mean my time in the city is coming to an end......the possibilities are endless! Last semester was disillusioning for many reasons, and maybe it was my own naivete and foolishness that added to it. I had assumed simple manners; apparently that's optional nowadays. I haven't read nearly as much as I've wanted to, nor have I writtten....almost at all. here's to hoping I kick it into high gear.