Book Review: Jen Calonita's "Side Effects"

I was lucky enough to get a review copy of Jen Calonita's upcoming book "Side Effects." Full disclosure: I met Jen last year, when she came to the bookstore I worked at, to do a reading. She was so incredibly nice and friendly, and her YA books are fun to read, and well-written. "Side Effects" is about this 15 year old, Whitney, and her 4 siblings. Their mother died a year or two before, and their father disappeared a few months ago, which is when her brother came home from med school to help take care of his younger siblings. Whitney is on medication (as anyone would likely be, after that), but her medication has an odd side effect….it produces musical hallucinations, making a situation turn into a music video, almost. This got a little confusing in the beginning, and actually, I think the book would have been good without that. The storyline and characters were so well-developed that that element wasn't necessary. It added whimsy, but I think it would have worked regardless. The chapters are told from different viewpoints of the siblings, which gives the reader a really good idea of the environment and the dynamic in the family. I finished this in a day, because it was suspenseful, engrossing, and the characters were so real.

If you like this book, her other ones are just as great: the Belles series, and the Secrets of my Hollywood Life series are my favorites.

surgery plans

So we finally have a plan for surgery. I met with the doctor and the rest of the orthopedic team on Thursday. By far, this will be the worst one yet. The fusion didn't take. So they will be shortening the second and third metatarsals and putting in screws in those bones, to hold them in place. They will also be removing all the hardware that is currently in my foot - a plate and 6 (broken) screws. Because there's an excellent chance of not having much bone left after that, I will give consent for them to take bone from my left hip. The other option is a cadaver bone - which we did last time and it didn't work. It is much more likely to take, if it is my own cells and bone. After that, he will re-do the fusion, putting in a larger plate and "as many screws as he can fit," as he said (somewhat jokingly…I hope). I will then have a cast (my first one EVER) for 2 months, and absolutely no weight-bearing for that long. Which is significantly different than my last 3 foot surgeries. He wants to make sure this works, and works well. After 2 months, I guess I graduate to a boot. So the recovery process is going to be loooooong. He was straight with me; he said it will be painful, both the foot and the hip, but I will be given analgesics, obviously.
I'd be lying if I said I wasn't nervous. Or upset. Or scared, a little. I know how bad the pain is with bunion surgeries. The last surgery was especially painful, and this one will be a lot worse. This will be challenging, to say the least.
The one bright spot is that at least I can work from home. I can write and edit anywhere I have an internet connection. That is the only bright spot right now.

white coat envy, again.

I went to the Strand last night to see Atul Gawande speak and read from his new book, Being Mortal: Medicine and What Matters in the End. Simply put, he single-handedly reignited my white coat envy. I have read all of his books, and like Jerome Groopman, he is one of those physician-writers whom I love, the kind of doctor I had envisioned I would be one day. Needless to say, my life took some detours and my path ended up different. Gawande has his MD and MPH, and is so down-to-earth. I got to ask him a question during the Q and A, and asked about his thoughts on the Death With Dignity Act. He gave a thoughtful, thorough answer, looking at me, making eye contact, and talking to me like it was just the two of us, he was that focused. I could see why patients would love him.

One thing gave me pause, though. Someone asked how he balanced everything - being a top surgeon, a nationally known writer, a New Yorker staff writer, public health, etc. He looked down, and said, "If you want to make a difference in the world, or be really really really good at something, you have to accept that it's going to suck up an incredible amount of time." He went on to say that he "steals" time to write, to plan, to do things. He also said he's probably not always the best husband, and that he's probably a "B" father, not an "A" father. "For instance, I'm missing my daughter's recital right now," he said. I appreciated his candor, and felt both admiration and sadness. I was glad to see he wasn't promoting the idea that yes! you can have it all! Because the sad thing is, you can't. Especially if you're a woman, it feels like. But I was sad because his book is about dying. He talked about how you want to live. And I wondered if, on his deathbed, he'll wish that he spent more time on book tours and writing, or that he went to more of his children's recitals. Will he wish he had sacrificed some media exposure to be an "A" dad, especially when his children are young? That's for him to decide. And maybe he won't, maybe he will be completely satisfied with his life decisions. That's not for me to judge. I know how important a career - especially one you love and are passionate about - can be a huge part of someone's life, someone's identity. But then I also wondered what would have happened if a woman had said what he said. What if a female physician had said to a crowd that she sacrifices part of her motherhood for her career, that she knows she's a "B" mother? I think she would be excoriated. She would be raked over the coals, torn down as a mother, seen as "cold" or unwomanly, bitchy, or unnatural.
I was told today that Helen Gurley Brown did not mention motherhood at all in her book "Having it All." Just something to ponder.

I am so thankful that I got the chance to see Dr. Gawande. His book is smartly written, the parts that I've read, and his storytelling draws you in because of his way of writing directly to the reader.

So many good books lately. I've been on a Virginia Woolf kick, and I'm trying to read the "classics" that I missed (and somehow, I've missed A LOT of them. Like, an embarrassing amount). But I haven't had much time to read, between writing for several websites, tutoring, and working for a writing/editing company. Which is good, but still. I guess when I'm recovering from foot surgery and still on pain meds (aka, not able to write coherently) I will get to read a lot. I'm being presented at Grand Rounds on thursday to the orthopedic team, since this surgery will be a doozy. Awesome.

Things I am Loving Lately

Life has been hectic. Between my internship ending, getting more freelance work, looking for a full-time position while juggling part-time jobs/projects….never enough time in the day. But I do have a few things I am loving right now, which help me relax and give me some much needed enjoyment.

1. The Rockabye Baby CD series. Lisa Roth, David Lee Roth's sister, created this group of CDs, a lullaby version of rock songs. I am listening to the Rolling Stones one as I write this, and am loving it. Other great ones are Michael Jackson, Eminem, and the White Stripes. I am jonesing for the Madonna one, Bob Marley, Nirvana, Journey, and of course, Van Halen (hey, they have Jamie's Cryin'!). Check out their website, and if you head on over to New York Family Magazine's website, I interviewed Lisa, who was fabulous and so great to chat with.

2. Virginia Woolf's "A Writer's Diary." Finally getting to this. I love reading that she also had doubts about her writing, and enjoying the glimpse I am getting into her life.

3. My Intuitive Doula training. It's going slow, but I am loving the reading and the Facebook student group page - great comments and discussions, and it's really making me happy. I'm glad I went with a distance option because I can do it on my own time, around my writing projects, while still getting support when needed.

4. My niece and nephew, of course.

5. CocoProtein coconut water with added protein. The vanilla and chocolate ones are fabulous, and for vegetarians, they have protein and vitamins.

I'm so glad the weather is turning cooler. Fall is my favorite season. Bring on the hot apple cider!

I'm back!

Alright! I'm back! Things were super crazy for a while. Moving, not sure if I was staying in NYC, not wanting to stay in NYC (still not wanting to stay in NYC), job searching, etc etc. Right now I am writing for a magazine, doing freelance writing/editing, working as a research assistant for two writers, and will be teaching a writing workshop in the fall.
Trying to keep NC homesickness at bay, can you tell?

Oh - and perhaps the thing I am most excited about, I am studying to get my doula certification. I'm going through Intuitive Doula. (NOT Intuitive Childbirth, which is a scam). I liked ID because you get trained as both a birth and postpartum doula, and the wide range of books that are required reading is much better than the narrower focus of some other programs. I like the holistic approach they take. It's distance, but it looks hard and intense already! Looking forward to it though.

So I'm very busy, but trying to stay afloat in the big dirty city. I can't believe summer is halfway over!

Things I'm Reading:
Infinite Jest - DFW
More, Now, Again - Elizabeth Wurtzel
Spiritual Midwifery - Ina May Gaskin

THREE YEARS

DUDE. Things have been crazy busy. BUT - thesis is turned in. And ironically, three years ago today, I got the phone call that I was accepted into Columbia's MFA program. OH THE IRONY. Job interviews are happening. Life is happening. Editing gigs are happening. So keep your fingers crossed that things are panning out. And if I happen to (gulp) happen to stay in the Empire State, so be it. But at least I will earn enough money to visit my peeps in Chapel Hill often. :) The weather has been completely shitty. My LLBean boots have been getting so much use, not to mention my pink Dora Docs. Last friday I found a pair of red shiny Doc Martens on sale at Harry's Shoes for $29!!! You can bet I scooped those babies up. It made me so so so happy.

I spent a large chunk of change on an online class through LitReactor to take a class with Lidia Yuknavitch, but I can honestly say it's been worth every penny so far. It's a 6 or 7 week class, and when I say I've never been challenged like this before, I mean NEVER. EVen at Columbia, I have never had such thought-provoking, soul-searching, earnest lectures like the ones Lidia gives, not to mention the homework she assigns us. It's a real challenge. You can't bullshit your way though it. And my peers in the class? I am astounded by their graciousness, their sensitivity, and their tact on critiquing when something needs work. No egos here. No bloodbath like in an MFA classroom. Makes me wonder if I could have saved thousands of dollars and just taken class after class on LitReactor for two years and put together my own reading list during that time. But, what's done is done. I don't regret spending the money. And If - when - I get a full time job - I want to continue taking these online writing classes to keep my writing sharp. I didn't get to take fiction and poetry classes at Columbia, so these are a great way to expose myself to them. I am a lucky girl. And very thankful. Of course, I'm hoping my tax refund covers what I spend (and then some, which would be nice).

I've been loving my tote bags lately. I got a Strand x Kate Spade one. But I often find them a little too small. Maybe because I carry a ton of shit with me. Especially since I decided to start the behemoth of a book Infinite Jest. I mean, 1079 pages? Come on, DFW. I need two bookmarks for this bitch of a book - one for the story, one for the footnotes. It better be good. I have stacks of books waiting to be read. PLus job searching and apps, getting my manuscript written and finished for Rhonda, figuring out what I want to do with my life, hoping I don't become infertile in the next few years, you know, the usual.

Latest obsessions: tote bags, Alex & Ani bangles, bullet earrings, scarves, Docs, Our Lady of Guadelupe bracelets (and I'm Jewish, go figure), Kanken backpacks, naps, bracelets, Reading Rainbow

New Year.

Wow, it's been a while. I've been busy and stressed. I managed to read 318 books in 2013, which could either mean I'm a really fast, amazing reader, or I have no life. You choose. Winter break was good, I got to spend time in North Carolina and Chapel Hill, and as usual, I'm missing it like crazy.

There's less than two months until my thesis is due, and I've been busy doing some freelance editing, tutoring, book reviewing, and applying for jobs. Oh yeah, and reading, of course. :)  Something tells me that with all the work I have to do, and all the anxiety I have, that I won't be getting much sleep in the next two months. Or really, until I get a job. But, in the wise words of Scarlett O'Hara, "I won't think of it now. I'll think of it when I can stand it."

I read The Goldfinch at the end of last year, and loved it - I don't think there's any way the story could have been shorter, and still be that amazing. I'm reading Lee Smith's "Guests on Earth" right now, and though she can basically do no wrong, this book is especially wonderful. Set at Highland Hospital in Asheville, NC in the 1930s and 40s, it is a historical fiction hybrid, telling the story of a girl named Evaline who befriends Zelda Fitzgerald, who later died in the fire at the hospital. She also examines how, even back then, women who didn't conform - who were just too MUCH of anything - were seen as ill and needing to be reformed. I'm really loving it. I've also been reading a lot of the classics I missed out on - Brave New World, Lord of the Flies, etc. And I'm pretty much loving everything on Hawthorne Books' website.

So yeah. I'm still alive, sluggin' it out in NYC.

book review: The Mary Smokes Boys

So. It's been quite a while. I've been busy writing, fighting off colds and the general malaise that comes with turning the clocks back, etc. I've been reading a lot, too - my goal is to break 400 books by the end of the year, and I have a little more than 100 books to go.....

One of my favorite publishers is Hawthorne Books. Their books are a distinct rectangular shape, with heavy, thick, beautifully done covers with inside flaps, and they always smell good. Oh, come on - if you're a booknerd you KNOW you smell new books. But more than that, I can honestly say I have yet to read a Hawthorne book I don't like. The thoughtfulness with which they are chosen is clear. The writing is intelligent and fierce, the characters are vibrant, the memoirs are heartbreakingly beautiful. Really looking forward to allll the books coming out, especially "I loved you more" and Ariel Gore's memoir. I want to read ALL THE BOOKS.

I was lucky enough to get an advance copy of the book The Mary Smokes Boys, by Patrick Holland, which comes out early next year. The first thing I noticed about the writing is how lyric, how poetic it is. The prose dances on the page: "...He watched wet oats and feathertop glinting in the broken light..." This is a story about a brother and sister, Grey North and Irene North. Their mother died in childbirth and their father comes and goes and is a drunk. Mary Smokes is a small town, with many people working with horses. The book unfolds over years, following both Grey and Irene as they navigate growing up, and watching Grey protect his sister because there is no one else to do so. Each character in the book is so richly drawn that the layers of stories never feel confusing or like too much; rather, they pull the reader in and demand you become part of them. Without giving anything away, I can say that I was devastated at the end of the book. I did not see that plot twist coming, and had to put down the book for a minute because it was so unnerving. I wanted to stay with the Norths forever.

the ugly side of smart.

(Identifying details have been changed, just so you know). Oh, you Manhatannites. Why do you make this so easy for me? Seriously. Tonight, at work, this older couple comes in. The woman looks high-maintenance, wears her sunglasses inside (maybe she doesn't know the sun's going down and um, we're inside), and they explain they came here this weekend and bought their 5-year old grandson 2 Diary of a Wimpy Kid books, but he already has them. And you know, the grandmother informs me, he's been reading since he's 2 -- self-taught, no less -- and he understands everything, so nothing is too hard for him. The grandfather was more realistic and realized that, hello, the kid is still five and not 15. As they're checking out, my coworker was talking with them, and the grandmother goes, "I just don't understand it. He got a 99 percent on standardized tests, not 100. His best friend -- who I don't think is really as smart as he is -- got a 98 and got into Collegiate, and he didn't. How could he not have gotten 100? Is that what they want?" My coworker explained that with standardized testing, a 99 percentile score means he did better than 99 percent of kids taking the same test, and it's not really feasible to get 100. Then the grandmother starts talking about how smart the grandson is -- did she mention he taught himself to read at only two years old -- and she just really wants to find out why he didn't get into Collegiate but got into Hunter, but of course they won't tell you, and she doesn't think they ask about reading because if they did, he would be in for sure. At this point, I believe my blood pressure was probably somewhere near 200/150 and I don't know what my face must have looked like. I couldn't actually believe what I was hearing. Remember -- THIS IS FOR KINDERGARTEN. They're talking about Kindergarten, and the gifted and talented programs for kindergarten. Can you imagine what these grandparents would be like about COLLEGE admissions? *shudder* I SO wanted to tell them that there's different kinds of intelligence, that the kid is only 5, for Christs' sake, that it's KINDERGARTEN, no one really cares where you go for it. And gifted and talented kindergarten? We've had this conversation before. Get over yourself. (The snark in me was all, yeah, well if he's so smart, why didn't he start kindergarten at 4, like me? BAM. kidding. I don't really care. Just being obnoxious to meet them at their level.). Eventually, they left the store, with the grandmother still talking her husband's ear off about how she really wants to find out why their grandson didn't get accepted to certain schools, and I'm sure he was tuning her out by then. I just turned and looked at my coworker, speechless. I literally could not believe what had just happened, that people like that actually exist. It was like The Devil Reads Scholastic. I hope this child has more supportive parents, healthier parents. My Lord.
She's going around dogging his best friend, saying he's not as smart as he is - when, clearly, he is - geez, woman. The kid is five. If someone ever disparaged my nephew over his struggles with reading, I would throw down in a hot minute.
This woman doesn't know the courage it can take for a kid to open a book.

I miss being with my nephew even more on days like this. When I talk to him on the phone and he tells me he wants me to come home so we can get another cat in the hat book, and then I have an interaction like this one -- such a stark contrast makes me so grateful for my life and my nephew. My nephew might not be reading fluently, but he has found a niche he enjoys, and I cannot tell you how happy it makes me when he asks if it's okay to read in bed. Or when he excitedly tells me he has a diary. Or when he wants to go to the "liberry." He has a heart of pure joy and happiness, and draws in everyone who meets him with his infectious lovingkindness. You can't learn that. And that's more important than any G&T program or standardized test.

Bram Stoker must have known Manhattan parents.

Today was Lindsay's memorial service. I didn't/couldn't go. I had work and didn't plan ahead to ask off and carpool up to Buffalo. Things have just been crazy insane, it feels like, between work, reading, writing, endless fatigue and daily life chores. It's hard to explain. It's been busy.

Manhattan parents, as always, have been a source of astonishment/frustration/disgust/and then some. Can someone, PLEASE tell me the point of smash cakes? They're exactly what they sound like. For a child's first birthday, it's a small cake the child SMASHES and mashes into their face and outfit, while everyone cooes over how cute they are. And people pay top dollar to have custom-made, expensive smash cakes. Then, a dad came into the store with a bag full of Eleni's cupcakes, all frosted and sparkly and personalized Happy Birthday-ed out -- at nearly $50 for a dozen, he had at least two dozen. And he picks up a picture book for the kid. I get that you want a memorable birthday. But if you're giving your daughter a picture book, do you think she gives a shit if her cupcakes are from Eleni's? Save yourself some money and go to Magnolia Bakery. Or - gasp - just get store-bought ones. Whole Foods actually has really nice ones. If you REALLY feel like roughing it, you could make them YOURSELF. Or have the nanny do it. Sigh. I just don't get it. And you - yeah, you, the mother who loads up on workbooks for her daughter so she "has an edge" on the other kids come September? Buying books that are a grade ahead to give her that "edge?" You keep going, and she's gonna fall off that edge. Take my word for it. Or not. But it won't be pretty.
And the babies and toddlers learning Mandarin. Another thing I don't get. Is this to trot them out as shoe ponies, showing how smart they are, that they are learning a super hard, culturally sophisticated language? Wouldn't, say, Spanish, be more useful? Hell, I wish I knew Spanish.
Then -- then -- I almost lost it this morning. This morning! Early! I hear banging and smearing on the front window - these kids are jumping and then smearing their hands down the front windows, and their parents are standing RIGHT THERE, looking at them, talking to them, seemingly having a normal conversation. Honestly, I was thisclose to walking outside and asking them to control their children. I just think that's complete disregard for other's property and outright disrespect. My parents would not have tolerated that behavior with my brother and I - we don't tolerate that behavior NOW, with Trey -- and he would never even think to DO that. I just am amazed at the entitled behavior of these little monsters sometimes. Really. It's like The Nanny Diaries, but multiplied a thousand times.

Then there are the sweet grandmothers who come in and I help them find books for their granddaughters, or we talk about the original Nancy Drew mysteries, and I tell them that I read them from my grandmother. Or the kids who are so genuinely mannerly and thankful for your help.....these are the rare ones. But it's nice when it happens.

I still really don't understand the need for multiple books about giving up pacifiers or diapers. I'm not sure how I feel about the AIDS books for kids in the "special topics" section. (when did we become a society that even needs a special topics section? My favorite title in this section is "No one wants a nuclear war." NO. SHIT.). Kid, you shouldn't even know what nuclear war IS.

But there are mixed messages. We do carry the Magic Fairies series, which is cute, I admit. There's a bunch - the Weather Fairy series, the Music Fairy series, the Sports Fairy series, the Color Fairy series. All is well and good until the fucking FASHION FAIRY series. Really? Do we really have to carry this? The Accessory Fairy? The BEAUTY Fairy? If you're going to tell me that it's so important to be progressive and have Meaningful Picture Books downstairs with Deep Messages, why do we have the Fashion Fairies? This causes way more anger than it really should.
Deep breath. I just figure my kid will get stuck with Madeline, Paddington, Corduroy, Dr. Seuss, PD Eastman, Berenstein Bears, Curious George, Eric Carle books, Beatrix Potter....classics. I don't need witty "word play" books or gender-neutral characters or whatever. If you do, more power to you.

They're kind of like vampires, Manhattan parents. They suck the life and energy right out of you. And most of my college classmates are these people. Lord help me.

Lindsay (1987 - 2013)

I write this blog post not even really believing what I'm writing. My dear friend Lindsay passed away today. She had alveolar soft-part sarcoma, a very rare sarcoma that has an extremely poor prognosis. But Lindsay had such a positive attitude. She did chemo, radiation, spinal surgery, craniotomy, rehab, OT, PT -- she did what needed to be done, with a smile on her face and a belief that she would beat this. She did yoga, was into nutrition -- she did everything she could to be healthy.We either met through LiveStrong or the "crazysexycancer" nutrition message boards; I can't remember which, to be honest. For over 5 years we emailed, Facebooked, texted -- while I was in NC, she was in NY, and we vowed that if I were to move back to NYC, we'd have to get together for cupcakes. And after I moved here, she relocated to MD to be near Hopkins for her treatment. She was there so often anyway. She loved the OBX, and shared my enthusiasm for pinkberry, Sperry Top-Siders, plaid shirts, the Rolling Stones, and the South.
After her two strokes earlier this year, I knew that wasn't good, but this was Lindsay: if anyone could overcome this, it was her. Capturing the whole thing on Instagram as she went along. When I wanted DBS (deep brain stimulation) for the tremors, I had planned on going to Hopkins -- I told her this, and she was so excited that we'd finally get to meet - under less than ideal circumstances, but if anyone could put a positive spin on things, it was her. We were both sad when it turned out I probably wasn't going to go for consultations about the surgery.

And today, scrolling down my Facebook newsfeed, I see that one of our mutual friends left her a message about how she "will be missed." My breath caught in my throat and I said out loud, NONONONONO. I immediately went to Lindsay's page. It was true. She had passed away earlier today. I'm stunned. I feel like this must have been sudden, because she was doing so well. I just don't understand the Universe.
I can't even believe this is true. Sending prayers and good thoughts to her parents and two brothers.

again, people.

For the love of G-d. I just keep reminding myself to take deep breaths. Manhattan parents, I just cannot even. There was a father today with a little girl - she couldn't have been more more than four, five at the very, very most - and he asked for suggestions. So naturally, I suggested Fancy Nancy or Pinkalicious. Apparently she has all the Pinkalicious books already, and after looking at the glittery Fancy Nancy book, he said he doesn't want her to read more of "this stuff." Okay. I suggested Clifford, the big red dog. Nope, she has read ALL of those. How about Dr.Seuss? Yup, she's gone through those. All of them. Every single one. I suggested the Curious George series. The genius has read all of those. She's also read "The Velveteen Rabbit," every Madeline book, dad voted down "The Giant Dance Party" without even looking at it...get the hell out of here. If she's read every single one, get this girl a goddamn medal. He just wanted to get something so he could feel morally and intellectually superior so he wasn't buying a book about Caillou from Canada or a big red dog. The little girl would have been happy with anything. Although, really, she seemed pretty passive and didn't show attraction to anything but Pinkalicious when it was mentioned. What these parents don't seem to get is that no reading is in vain. You don't get  it, do you, people? Foster your child's interest. Make it fun. If they show an attraction to a book, take a look at it - don't dismiss it because it's not "intellectual" - if you show disdain, your kid will subconsciously pick up on that. Every time. Believe me. Even if they don't quite know what that feeling is.

There were maybe 3 or 4 kids who actually thanked their parents when they bought the books for them. It's sad when that's an anomaly. There were the few kids who were very sweet and said please and thank you and they were a joy, as were their parents. I wish there were more of them.

I know I sound crotchety and old, but seriously, the entitlement is just way too much. It's not even that - it's lack of basic manners and social skills. But what should I expect when parents actually don't even let the person in front of them put their change in their wallet before putting their own purchases in front of the person, practically forcing them out of the way. There are the parents who come up to the side of the desk while I am still helping the person in front of them - and they'll shove their stuff onto the table! Basic line etiquette, people. I thought we learned that in preschool, no? Or did we have to go to the gifted and talented preschool for that? Oh, snap. 

I also think maybe the whole competitive, driven academic thing is nagging me. I have been a gunner my entire life. Meaning I have been competitive in classes. Always doing the readings. Raising my hand. Honors classes. Honor Roll. Everything depended on it. And then in grad school, at UNC, everything depended on getting into a PhD program. And when I didn't, my entire world as I knew it dissolved. I had no idea who I was. I worked freelance and nannied for 2 years, and then applied to the MFA programs. At 30, I finally let go of the need to try and be the best. (and yes, I get the irony that I wound up at Columbia).  Maybe I've failed. Maybe I haven't. It's all in who's seeing the picture, I guess.

Another thing I don't get is this phenomenon of parents buying a gift for a child on the way to said child's birthday party. They have waited until they are en route to the party to get a gift. Making it essential that they get out of the store quickly. With the present wrapped. In the good ole' days, we used to go ahead of time and pick out a present, really take time with the decision, and then wrap it at home. I just don't understand this. Does this happen everywhere or just here? Is it a generational thing?

If I sound cranky, I am. I'm tired. I'm still not physically 100%. I have made absolutely no progress on my thesis because I'm always so tired or blah. My tremors are especially pronounced lately. My next appt is at the end of June, but what's the movement disorder dr going to do? There is no more medication to try. Klonopin dulls the tremors a little, but to see any real improvement, I have to take a full pill, which knocks me out, which does not bode well for taking it during the day. And it has a long half-life, so even if I take it at night, I have that "hung-over" and super tired feeling the next day, which is a bummer. And people, benzos are addictive substances. As Nancy Reagan taught me, "Just say no to drugs."

But parents, here's a gifted kid pro-tip: In the real world, people don't really give a shit if you're "gifted" or not. So along with buying whatever book you're buying, teach your child to say please and thank you. And I promise - promise - your child will not disintegrate if you tell her "no" to something. Hard as it may be to believe, it is, in fact, true. If you don't feel comfortable trying it at home, do it in a public place first, just in case.

what a day.

So.....staying in NY. Working (at a job I love, a kids/YA/teacher/parent bookstore), trying to write my thesis, reading a lot. My paternal grandmother passed away, making that three family members I have lost in less that a year and a half. Trying to find an angle into an essay on that. Still on one medication for tremors, at the lowest possible dose. I'm trying not to let the tremors interfere too much, but sometimes scanning things or in stressful situations they get bad. At least they did today.

Manhattan parenting....yeah. Getting an inside view. It's stressing me out, and I'm not even the kid. I don't know. I could never raise a child here. Parents are buying $50 books to get their children ready to take tests to get into Gifted and Talented Kindergarten. What could you possibly do in GAT kindergarten? Learn relaxation techniques during nap time? Meditate? And really, will that make a difference in your child's educational career path? I would wager a guess and say probably not. And honestly, if you keep pushing and pushing and pushing.....have you ever seen the movie "Little Man Tate?" Great example. A kid needs to know they're not *just* their achievements. They need to be allowed to screw up and read silly things and do messy projects and sometimes do things below their age level that they just love. A kid can only take so much pushing. Really. Because eventually, they'll internalize it and do it themselves, thankyouverymuch, and though this is good to an extent, if your self-esteem and identity is built around it, this can be not so great. Drive is wonderful, huge fear of failure is not.

Not every book has to Have a Message. Sometimes it can just be fun, like Pinkalicious. It's just important to instill a love of reading in the kid. Give the Intellectual Stimulation a break.
I read Madeline as a child and was not traumatized because she was an orphan.
I read Clifford the Big Red Dog and am not dumb because it's more "commercial."
I read the Berenstein Bears and am not morally deficient because they "don't always send the right message."
Christ, I read about Rainbow Brite and Strawberry Shortcake and My Little Ponies. I think I turned out okay. People are amazed at how much I read. This is why. Because I learned to love it at an early age. And, I happened to be good at it. It was/is My Thing.

If reading isn't your kid's thing or doesn't come easily, that's okay - my brother was/is an excellent artist and great with putting things back together. Not to mention he's much more logical than I am. Being smart manifests in all different kinds of ways. I wish I could remind some of these parents of that.

NY under water.

Water. New York City. Jaime. Which of these is not like the others and does not belong? That's right!!!! Jaime!!!!! I am especially bitter today because it has been a *very* rainy day, and I hate when it rains in the city. But I had been running errands/getting prescriptions filled/etc when it started to thunder, and I just had to pick up a few things at the market....I figured I'd beat the rain home. Now, West Side Market on a GOOD day makes me lose faith in humanity. Try getting stuck inside with a horde of other people, including people who have run in off the sidewalk to escape the apocalyptic rainstorm. After about 20 minutes, when it seemed to be easing up a little, I opened my umbrella, slid my bag of overpriced groceries onto my wrist, and held the umbrella directly in front of my chest, since that seemed to provide the most protection with this rain. The whole walk home you can imagine what I was muttering.

Then I decided to do laundry. I put my clothes in a washer, add soap, pay for it, and then a guy tells me he just washed his in that washer, but it didn't wring out all the water so he has to rewash them. Since I already paid for it, I was like, okay, I'll take my chances. Well, whaddaya know? Same thing. I have the brilliant idea of bringing it upstairs to dry on the drying rack. Do you KNOW how heavy a load of wet laundry is? So I'm hanging stuff on the rack, thinking, this might work, when I realize there is a small ocean under the drying rack, and my clothes are saturated. I grabbed towels, wiped the whole mess up, threw the clothes in the bag, and went back DOWN to the laundry room to rewash my clothes. I pay for this privilege.

You know, if I had been stuck somewhere down South, people would have started talking with each other. Here? Nope, everyone's glued to their iPhones, posting updates and texting and talking to people.  People are pushing each other aside to get a little more room for themselves and their bags. Everyone on their own little island. Sometimes in situations like that, I find myself almost starting a conversation with someone - and then I realize it would be weird here. Sigh.

wrinkles in time.

I am sitting here on my bed, listening to Birdy, Ke$ha, and James Taylor on my iPhone, surrounded by books - ARCs, school books for the make-up classes I have next week, and books on childhood literature. There's also one I bought today that I keep picking up, running my hands over the shiny cover, and hesitate to actually start reading. The book is the 50th anniversary edition of Madeleine L'Engle's A Wrinkle in Time. I vaguely remember reading this as a young girl, and loving it -- yet I hesitate to start it again, as if by opening its pages, I'll open up a tesseract of my own. What is it about these books we love from our childhood that stay with us all these years? I remember wanting to sleep over in the museum after reading From the Mixed-Up Files of Mrs. Basil E. Frankweiler. I wasn't a huge fan of The Phantom Tollbooth, sad to say. I loved Scott O'Dell's Island of the Blue Dolphins. But what is it about L'Engle's book that is giving me such pause? It's just a book, Jaime, not a magical portal. I wonder if it will come back to me once I start reading it. This is the magic of books. This is why I want to be a writer.

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.

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.