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.

it's wednesday.

So my tremor's gotten significantly worse, and I spoke to my movement d/o doctor today. She said that stress definitely can increase the tremors, but we need to see if the increase continues to determine whether this level of intensity is here to stay. She then told me that a colleague of hers told her about octanoic acid, or caprylic acid, which is thought to possibly mimic alcohol's effect on tremors (i.e., temporarily calm them). I found the study. It's a small study, like she told me. 19 people. The supplement started to work nearly three hours after taken. But it worked. For some. So I went to the Vitamin Shoppe and bought the stupid supplement. I don't even want to get my hopes up, because if it doesn't work, I'll be even more disappointed.

I thought I would be back in Chapel Hill. I thought that being down South would have a calming effect on my whole body, inside and out, my stress levels, my happiness, etc. -- which would translate into a reduction or disappearance of the tremors. I was kind of banking on North Carolina being the remedy. But obviously, I need to reframe. I'm trying to minimize my stress levels, but that hasn't really been working lately, obviously.

My grandparents bought me an air conditioner, which feels like a delicious luxury here in NYC. Makes me never want to leave the house even more.

thought for the day.

Carolina. That is all.

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.

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?