Be careful with everyone's money

Never Done: Went to the Celiac Center

After months on the waiting list, I finally had my first appointment at the Celiac Center. My doctor was an hour late seeing me (I read the New Yorker cover to cover for the first time in months and once again realized how un-funny I find Patricia Marx) but the doctor was focused and attentive and kind when she did see me. She asked a bunch of questions, did a physical exam, and drew blood; I didn't learn much -- the real information will come once the lab results start to come back -- but I felt like I was in the good hands of someone who has a broad knowledge of celiac and also the potentially related issues (thyroid, iron) I'm trying to solve.

This week's mide (middah) is Frugality: Be careful with your money. When I got done with my appointment, Dr. Lewis asked me if my insurance requires that she send to a particular lab. I found her question unusually thoughtful for a New York doctor. When I didn't know the answer, she asked Yvonne, her administrator, to check for me. Then, when Yvonne was helping me make ancillary appointments (endocrinologist, bone density test) she called my insurance company back to make sure she was clear on what they would and wouldn't cover. This all made me think about frugality a little more broadly than the way the mide is framed, and I decided to re-write it: Be careful with everyone's money. Maybe the big banks could take a lesson from these two women who have their hands full with their patients' medical needs, but who still take the time to guard other people's money. And if the big banks won't, then I will.

Balance

Never Done: Celiac Center
Never Done: Knit on the subway
Never Done: S'menore

There are 13 mides (middot) but not one for what I need most right now: Balance.

Humility: seek wisdom from everybody
Patience: Do not aggravate a situation with wasted grief
Equanimity: Rise above events that are inconsequential
Truth: Say nothing unless you are 100% sure it is true
Decisiveness: When you have made a decision, act without hesitation
Cleanliness: Let no stain or ugliness on our self/space
Order: All actions and possessions should have a set place and time
Righteousness: What is hateful to you do not do to others
Frugality: Be careful with your money
Diligence: Always find something to do
Silence: Reflect before speaking
Calmness: Words of the wise are stated gently
Separation: Respect in sexual and intimate relationships

For the past month, I've been trying to squeeze balance into Patience, Equanimity, Truth, and Decisiveness, but really -- I need to meditate on a mide that would be something like: Balance: Do not let your board responsibilities screw your work life.

It feels vulnerable to write about this, but I think I should write about challenges that I am not overcoming easily with the use of Mussar, as well as the ones I am. As I've mentioned before, I am working on JFREJ's annual Marshall T. Meyer Risk Taker Awards, which are scheduled for tonight (and if you are in or near New York, you should come!) We hired Nikki to be our event coordinator, and she is doing a phenomenally wonderful job -- she is organized, effective, frugal, calm ... wait a second -- she pretty much embodies all the elements of the Mussar mides above! We also have a JFREJ staff administrator, Sarah, who has also been wonderful -- both in an ongoing way, and for the Meyer Awards. And we have a small, strong committee made up of member and board volunteers who have put in tons of effective, productive time -- to produce this event.

I'm not sure how everyone else who has been working so hard on the Meyer Awards feels, or how well they have been able to keep a balance of their commitments, but I've been wobbling for weeks, and I finally toppled over yesterday: I had a big grant deadline, and I did not make it because I gave too much of my time to JFREJ and not enough to my job.

People who know me know that this is not the first time I have had this kind of balance problem. It has gotten better, and then it sometimes gets worse. This time, I (along with the others) tried to address it from the start, by assessing capacity and planning the event to be manageable given our capacity. But somehow it grew, or we shrank. I can only speak for myself, but I ended up putting 20-30 hours a week into this event for the past weeks. This meant I stayed up way too late trying to squeeze everything in, an it also meant, eventually, that I just didn't get my own work done. I tried to be patient about it, and I tried to figure out what was consequential and not, and I tried to act decisively, and I looked ahead into the upcoming week's mides, and especially pulled on Order: all actions should have a set place and time. And still, I toppled.

So, there I was yesterday, at the moment when I realized it was no longer possible to complete the grant by deadline, and I felt shitty. I thought about going to the gym, which I hadn't done in 2 days, and I thought about sneaking around the corner to see the Harry Potter movie, which I haven't had time to do yet, and I thought about writing the essay part of my adoption application, which I need to do, and just then, my friend Michele sent me an email telling me about a roundtable discussion with the Director of the Celiac Center, way up on 168th Street at Columbia University Medical Center. I have been on the waiting list to see a doctor there since September, and my appointment is not until late January. In the meantime, I have been trying to figure out what I should be doing to get an accurate diagnosis. My doctor did genetic testing, and I did come up with one of two genes for celiac. That just means I'm pre-disposed; it doesn't mean I have it. She then asked me to go on a gluten-rich diet, and wanted to test my blood for antibodies to gluten after 4-6 weeks. All the reading I've done has shown me that the best diagnosis comes from 3 months on a gluten-rich diet, and an endoscopy. I've been calling the Celiac Center every week to see if they had any cancellations, and I've asked if someone could consult with me about this preparation for diagnosis process, but they have told me I had to wait til I see someone. Meanwhile, it is physically uncomfortably in a number of ways to be eating so much wheat, so I don't want to be doing this wrong.

So when I got the invitation to meet the director of the Celiac Center (and as it turned out, the geneticist and the nutritionist) and ask questions in an informal setting, I decided to ride an hour north. And it was completely worth it. There were about 10 people there, and we all got to ask the questions we needed to, and we all got the answers we wanted. (Except maybe the woman who was obsessing over whether wine has gluten in it, and after all three professionals told her no, she kept talking about the flour paste vintners wash the wooden barrels with, and the gluten fillers American winemakers put into wine...) I found out that I am not eating enough gluten to prepare for testing, that I do need to do it for 3 months, and that while a blood test can be interesting, it is completely inconclusive -- especially at the lab my doctor uses, which doesn't run a full antibody panel. I found out that I can put gluten powder in a smoothie (and that gluten powder even exists.) I found out that the gene I have is the more common of the two to have. And I found out that I am probably not going to get an appointment before my scheduled appointment, but now that I know how to be prepping, that seems OK with me. It turned out to be an excellent use of my time.

And to make it even more fruitful, I took the knitting project I pulled out during Crafternoon -- the long lacy scarf I found in my mom's knitting box -- and I started it on the subway. I have knit in a lot of places before -- classrooms, living rooms, planes. But I haven't knit since moving to NYC, so I have never knit on a subway. It turns out it's like an amulet. People leave the seat next to you free (so your arms can move freely?) and they smile at you. I am never riding the subway without my knitting again.

One more thing. Seventh night s'menore:

One in ten

Never Done: First gathering of the Brooklyn Soup Swap.

I made 8 quarts of Chestnut soup (I have also never made chestnut soup before) and then 6 people came over to each pick up a quart. (I just realized -- sorry to totally interrupt -- that I have not remembered to say a Shehekhianu since the walk over the Hudson. Oops.) The soup, anointed with clove, bay leave, nutmeg, and Madeira, turned out delicious, and even allowed me to try a new cooking technique: sweating the vegetables under a round of oiled parchment.

When it was done, the soup swappers came over in waves, each overlapping with at least one other person until the last two came and stayed, talking deeply, for a couple of hours. Which I loved. Is it too much of a cliché to write about how food brings people together? I guess I could started the Brooklyn Cigar Swap, and I could have sat together for hours talking about intergenerational dating, how to comfort a profoundly sad child, the best grass-fed burgers in Brooklyn, and the lighting in the movie the Social Network, and how it relates to language classes being held in the mornings and math classes in the afternoons -- while smoking hand-rolled cigars. But somehow I don't think it would have been the same. I think that the fact that I literally thought about everyone while I was cooking, and that everyone went home with a quart of cream of Chestnut soup, which they are going to heat up and eat over the next couple of days, actually nurtured the conversation, and is actually going to make us closer. I already feel closer, and profoundly appreciative for the deepening relationships. Not to mention the best joke I have heard in months:

What's the hardest thing about being gluten-free?

Telling your parents you're gay.

A Sense of Wonder

Never Done: Have genetic testing. My body doesn't store iron. I don't have any ferritin, which is (source: wikipedia) "a ubiquitous intracellular protein that stores iron and releases it in a controlled fashion. This protein is produced by almost all living organisms, including bacteria, algae, and higher plants, and animals. In animals, it acts as a bugger against iron deficiency and iron overload." We are supposed to have between 10 and 291 nanograms/mililiter of ferritin in our bloods, and I have 1 on a good day. It's been this way for many years. I have taken iron supplements, been injected with weekly B12 shots, cooked on an iron frying pan, eaten kale, spinach, molasses, raisins and apricots, and none of this had had an effect. Then earlier this summer I asked myself for the first time (shehekhianu) WHY I might have such low ferritin. And it turns out that the two most common links are thyroid disease and celiac disease.

I'll try to avoid going all too-much-information on you here. We did some blood tests, found I have thyroid problems, and I started treatment. Celiac is harder to test for because I've been on a wheat-free diet for 18 months (because I feel much better without it) and yet in order to test positive for celiac, I would have to eat gluten for many months, so we could find the enemy within. To get a read on things sooner, and to help assess whether it is worth it to submit me to all this, my doc ordered some genetic predisposition testing for celiac and we just found but that yes, I carry a gene variant associated with celiac disease. I've been gene-mapped! I can't believe I didn't ask her to test if I share an ancestor with Henry Louis Gates, Jr. and Mario Batali. (I still haven't watched Faces of America. I'll put it on my list.) (I also haven't eaten at Eataly.)

On the one hand, this news and this genetic testing technology don't seem like big deals. On the other hand, I am old enough to think like my parents thought, and can still be amazed with the advances in technology over their, and my, lifetimes. My father was born in 1918, and my mother in 1929 -- and I was born in 1963. Let's think about all the things we didn't have when I was growing up. ATM machines, personal computers, IVF, the internet, Dippin' Dots. And if I'm honest, I like that I still have this sense of wonder, when I walk down the street and see everyone talking on their cell phones -- and I think about how it was when I grew up, when I went into the bank to deposit money into our savings account, and I typed my papers on a manual typewriter, and people who were infertile adopted, and I did my research in the public library, and we made our own ice cream with a hand crank, and the phone was connected to the wall in in the kitchen. I'm not trying to go all sentimental retro here -- because I love my computer, and I am incredibly happy that my friends have been able to have their fantastic children with the help of IVF, and I talk on my cell phone all the time. (I hate Dippin' Dots. They are made of chemicals and taste bad. I love ice cream though, and still eat it every day.) So no, I am not trying to go all sentimental retro; I'm just trying to explain about my sense of wonder when I see this on my lab report: !HLA-DQ2(DQA*05/DQB1*02): Positive.