My Gideon seems to be a pretty deep 2 1/2-year-old.
A recent conversation:
GIDEON: My mouth feels sleepy. ME: Hmmm, I wonder what that might feel like… GIDEON: It feels sleepy. ME: I’ve never felt that before; is it a good feeling or a not-so-good feeling? GIDEON: It’s a different feeling.Crossposted to http://wonderboys.wordpress.com
In December of 2000, I started having strange and very unpleasant digestive symptoms, the details of which are better left unspecified. Several months later, after delightful (not!) medical testing and no small amount of misery, I received a diagnosis of ulcerative colitis. About a year and a half after that, having finally found the right gastroenterologist, the right medications, the right acupuncturist, etc. the disease went into remission and I started feeling well. There have been a few minor flare-ups since then, which were quickly brought into line. Since a few months before Gideon’s birth, I’d been coasting along very well indeed.
Then came the ear infection, the antibiotics, the loss of health insurance coverage and the attendant rationing of medication. The perfect storm.
We’re back on health insurance now (to the tune of $1100 a month) but that relatively short gap is the gift that keeps on giving, for I am once again in flare-up. The medicines that have been held in reserve to help with such situations are not (yet) helping. It’s been about a month. I saw my acupuncturist last week, and she hopes she can get it under control within 4-6 sessions.
Meanwhile I’m miserable, and stressed, and dealing with a new gastroenterologist (the old one no longer sees patients and is heading toward retirement) who is already talking about using a whole new scary category of medicine.
There’s a punch (in the gut) line with ulcerative colitis: after eight years with the disease, one is at increased risk of colon cancer. I’ve had it for ten years.
When I first got sick, I had just had a terrific year with my solo singing, and my career seemed finally to be on an actual trajectory. Although I eventually found another mode of expression (musical theatre) which suited me even better, the feeling of being cut down just as I was getting started was very difficult for me to cope with. I felt so much resentment and self-pity that the pond got drained, just as I’d finally gotten my ducks in a row.
I thought being sick at the beginning of my “real” career was hard. Being sick while taking care of two young children is harder. I’ve been preoccupied, grouchy, impatient, depressed, and downright horrible. And at the same time, I’ve been contemplating my own mortality and the possibility of not living long enough to see their weddings, or even their b’nei mitzvah. Morbid, yes? (No, I don’t actually have cancer. As far as I know. But I do feel like shit. No pun intended.)
The thing is, just because the doctor and acupuncturist team have always been able to get things under control in the past doesn’t mean they always will. Sooner or later the jig is going to be up.
My brother, although extravagantly talented, has not had an easy life. The intense focus on his amazing piano playing — both from our family and from our community — turned him into a bit of a circus freak. His first marriage was to a South African woman who was not warmly welcomed into our family. The transition out of that marriage into his second marriage was full of drama and difficulty, both emotional and financial.
Yet he has in the past few years undergone a kind of renaissance that warms my soul.
I often imagine what it must have been like for him at his first wedding, a formal church wedding in a faraway country, with nobody from his family present. When he married again a few years ago, it was in Ann Arbor, in a rented room at the J.C.C., with a reception at a local Chinese restaurant. The officiant was a Rabbi who has been a friend of our family for nearly half a century. (He’s the same Rabbi who performed my sisters’ marriages, and my own.) I sang “Widmung” with my dad accompanying, and when I looked over at Michael and Jamie after the song, I saw my brother exhale, possibly for the first time in his life. His eyes brimmed with tears, and I felt, profoundly, that he was at long last home.
These past few years, he has flowered in amazing ways.
In the old days, the two most common descriptions of him were probably grouchy and cheap. In fact, he used to take a lot of pride in being a skinflint. He subscribed to the Tightwad Gazette and made growling noises about any extravagance. He routinely asked, “How much did they rip you for that?” He was cheap.
Over the Martin Luther King Day weekend, he and his dear wife came to visit us, and we had a wonderful time. They played with the kids. They never let me near the kitchen. They played scrumptious four-hands piano. (Oh, how I envy that ability!) They came to synagogue with us. (My brother is not an organized religion kind of guy.)
Moreover, I was blown away by their generosity. Their company would have been enough, but their thoughtfulness in every respect made the visit extraordinary. They gave us money for dinner and a movie and watched the children while we went. They took us out to the coffee shop and somehow sneakily managed to purchase a gift card so that we could go back on our own. They stayed in a hotel and never arrived at our house without food — sometimes enough for a full dinner, which they cooked. They bought puzzles for the kids.
Then this afternoon I came home from picking up Akiva at school to find a box on the front porch. My formerly tightwad brother bought me a crock pot.
I am incredibly grateful, not just for the gifts and gestures, but (even more) for the opportunity to see my brother happy and at peace.
I’m realizing as we navigate this health insurance business that despite our run of bad luck, we are still incredibly privileged. I can’t imagine that a single mother working three shitty jobs would have access to such a plethora of doctors and lawyers and health care consultants, but we have been overwhelmed with friends’ offers of support and assistance with making sense of the bureaucracy. Just by having attained a certain level of education and wealth, we still have resources within the educated, wealthy world, even though we cannot (at the moment) afford to live in that world. It’s a very weird place to be — not belonging but not entirely not belonging — but the residue of having belonged is very helpful in many instances.
The week started out wonderfully. No, really. The trip to Michigan was such a pleasure, being together as a family was so refreshing — I started this week with a noticeable jolt of good feeling. Everyone was getting along really well, and we all felt renewed by the time off.
Then the bottom dropped out again.
The first inkling was difficulty in refilling a prescription. I’d gone to the pharmacy to get a refill of a medicine I’ve been using for the past 8 years for a chronic condition. I’d made all the necessary calls to get a new batch of refills approved, but when I went to pick it up, the pharmacist said the prescription was out of coverage. She said it happens a lot in January and is probably related to new insurance cards. Sure enough, when I got home, there was mail in Bill’s pile from Blue Cross/Blue Shield including new insurance cards. Back to the pharmacy I went, but when I proffered the new insurance card, the system was still showing the prescription as being out of coverage.
Bill called the insurance company and found out that we no longer have health insurance.
Bill had other business to address with the guys at the gym, and when he called in, he found out that there had been some problems with the person who was administrating the 401k and the insurance policies, and at present, they are not providing health insurance for anyone. Including us.
The courtesy of a warning phone call? Not so much.
The rest of the week has been a blur of scrambling to apply for MassHealth, canceling my therapy indefinitely (sob!), searching for a way to get an emergency supply of my medication, praying the children don’t get sick, and trying to figure out the thicket of bureaucracy around health insurance.
And a lot of crying. Both kinds.
Alongside the fear and disappointment, it’s also been a blur of hearing from friends in the medical and legal professions that they have our backs, getting invaluable help and direction from Julie (you’ve added her blog to your reading list, right?), and feeling an enormous wave of sympathy and support from friends and strangers near and far. (I really have to give a shout out to my gastroenterologist’s PA, who worked the phones to find someone with the drug company who could help.) With every crisis, there is this amazing flip side of kindness that is as uplifting as the crisis itself is discouraging.
Still it has not been my favorite week.
I’ve always had a high nostalgia quotient. Even as a teenager, I could work up a pretty good nostalgia trip, delicately seasoned with longing. For a kid who had not lived much at all, I had a surprising amount of such wistful, slightly-pretentious feeling.
I also like lists, and so I always enjoy the year-end pieces that start to crop up in newspapers — and now web sites — in December, reviewing the year’s events. It’s interesting to me to see how other people parse recent events and what gets considered important.
My own year in review I feel more ambivalent about. This has not been my favorite year. It’s been really difficult, actually, for all the reasons I’ve articulated over and over on this blog. Yet when I look back on the year I see things I didn’t realize were happening at the time, and I feel a lot of pride in how I’ve grown. Even grown up a bit.
One thing that characterized my first 16 years with Bill was the extent to which he took care of me. He made my life easy in every way he could — by cooking, by helping with child care, by having money to enable me to pursue my dreams, by being willing to be the one who went out in the snow to do errands or get some dessert. It sounds like an enviable situation and in many ways it was. And yet this year I have had to learn to take care of myself much more — and to take care of the children, and in so doing I have deepened my compassion for others and settled into a sense of myself as competent rather than dependent. While part of me would love to go back to before, I am glad for having developed the feeling of self-reliance.
So, while I’m glad to see 2009 go, I’m also glad for the lessons it’s taught me.
This weekend has been ever so much better than last. The good vibe began on Friday, when Timothy Jones, a friend from college days, came over to spend the afternoon and have dinner with us in advance of his performance as the baritone soloist in Handel’s Messiah with Boston Baroque. I’ve known Timothy for nearly two decades, and he holds a special place in my heart. We don’t see each other or speak often, but there is a rich vein of love and caring between us, and it was sheer delight to have him in our home and to introduce him to the boys. He arrived in the afternoon and kept us company, sang a little, accompanied me a little on the piano while I sang, and helped me cook dinner. Just at dinnertime, Bill arrived home, and we were joined by our friend Julia, for a tasty, festive Chanuka & Shabbat dinner.
Saturday morning the kids and I puttered around at home, making collages, playing in the living room, and listening to music, all with our particular flavor of chaos. (Just in case you were picturing an orderly progression of activity rather than a jumble of everything at once.) After I got Gideon to sleep (barely), my dear friend Jennifer came over with the intention of babysitting both kids so I could get a break. I had planned on having a bang trim and then going off on my own (where I don’t know) but at some point Friday it hit me that Akiva has not had an uninterrupted minute of my time for many months, and that maybe having a little one-on-one with his old lady might be good for him.
It turned out to be good for both of us. We went to the coffee shop, where I bought him a cookie. Miraculously I had credit for a free drink on my coffee card (from before) so I used it for a large steamed hazelnut soy milk. Akiva and I sat in the big comfy chairs and chatted about this & that. Once he finished his cookie, he looked a little sleepy, so I asked him if he wanted to snuggle with me on the coffee shop couch, which he did. There’s a little corner of children’s books at this lovely neighborhood coffee shop, and he grabbed a couple and snuggled in while I read to him. Although I might have liked to have that hour or so to myself, sharing it with Akiva really settled us both and renewed our closeness, which was somewhat frayed after last weekend’s drama.
We got back just in time to get dressed up and ready for our Temple’s Chanuka Dinner & Talent Show. The boys helped me reassemble the living room — jumping on the couch isn’t just for Tom Cruise, I’ll have you know — and we got ourselves out the door with a relative minimum of grousing and craziness. (Fine, the boys’ kippot were held on with butterfly clips. So sue me. They always take off their kippot within minutes of arriving at the synagogue anyway.) I managed to rehearse for the talent show portion of the evening without the kids getting into too much trouble, and then we hung out waiting for Bill to arrive.
The organized part of the evening began with Havdalah, followed by candle-lighting (everyone brought their own menorah), dinner, talent show, singalong, and schmoozing. Luckily I was first on the talent show, because the boys were starting to lose it. Bill took them home after I sang, and then I stayed out with the grownups till I bloody well felt like coming home! (I wanted to be sure the kids were tucked in so I didn’t undermine Bill’s autonomy. Yeah, that’s it.)
This morning, I had my church job and Bill had to work, so our wonderful friend Nancy came over to watch the boys for the duration of my church commitment. When I arrived home, they were well-fed, and Gideon was ready to go upstairs for a nap. Resourceful Akiva stayed downstairs and used his new paints and sketch pads.
Once Gidi was asleep, Akiva and I hit the kitchen where we/I made, over the course of the afternoon, two loaves of oatmeal bread, two dozen doughnuts (a Chanuka tradition, my first attempt), a huge pot of applesauce, baked sweet potato fries, cranberry sauce, and wide noodles. Most of which was served with the amazing brisket that Bill cooked up last night. (All I had to do was microwave the meat! What a husband!)
After we got the kids to bed tonight, I set to work packing up several cartons for my volunteer project, which this month included three boxes just of Christmas gifts and wrapping supplies. I was touched by how many people made contributions to the toy drive — this is the first year I attempted to organize it and I use the term “organize” only because I don’t know of a word for “slap together with barely a brain cell to spare” — including some folk from my church job. It’s good to know that even in hard times, people are still willing to share what they can.
I’ve been struggling lately with Shabbat. Bill has been working on Saturdays, in order to take advantage of increased foot traffic in the store. I can understand his desire to do this, but it has turned what’s supposed to be a day of rest and reconnection with family into something quite different and quite difficult. The main trouble, I’d say, is that Gideon has a hard time napping when Akiva is around, even when Akiva does his best to contribute to a restful atmosphere at tuck-in time. All it takes is one giggle, and the two boys get themselves and each other going.
This past Saturday was such an occasion, and I couldn’t get Gideon to sleep at midday, even though he (and I) badly needed that nap. When I realized it wasn’t going to happen, I asked them to give me a little space so I could take a break. I went downstairs and within the course of maybe ten minutes, they had emptied several file folders from my file drawer, scattered baby powder all over the bed, and torn pages from a beloved (out of print) book.
I lost it. Lost it.
In a moment (a long moment) of sheer insanity, I screamed at the kids in some horrendously foul language, shaking my fists at them and stalking them from room to room. I did not, thank G-d, touch them, but there was violence enough in my words and my feelings. The combination of circumstances awoke a boiling rage, the likes of which I don’t remember feeling in a long long time. Maybe ever.
In recounting this incident to other mothers, every single one — to a woman — has copped to doing the same thing. Although my remorse is strong, it helps to know that I’m not the crazy one. At least not the only crazy one.
I’ve never been a big fan of the so-called holiday season — which is really the Christmas season with also-rans Chanuka and Kwanzaa. I don’t like the commercialism, I don’t like the false equivalency of Chanuka with Christmas, and I could positively go bananas from the electronic wallpaper that takes Christmas carols (music I actually like) and makes it obnoxious both by its ubiquity and by some truly appalling arrangements.
I’m a little bit grinchy, I’m a little bit rock & roll.
I’m finding other triggers as well, unique to our new situation.
The other day, on what I look at as my last gasp of air before Bill hits the retail peak season, during which time he will be working much longer hours and more days per week, I took a long-neglected gift card from a silly store I’d never otherwise shop at and parlayed it into free Chanuka gifts for my kids. The bad news is that it required me to go to a ritzy Boston mall, something I haven’t done in — well, you know.
As I passed Neiman-Marcus, Jimmy Choo, Williams-Sonoma, and all the rest, I was struck by the notion that I may never again be able to make an impulse purchase, just for pleasure. I don’t think I was ever that consumerist, but I did like to wander among the kitchen gadgets and the leather boots. Now I don’t even take the kids to the coffee shop on a rainy day. I feel as if I live in a society I no longer belong to. I see people shopping — just looking at and buying stuff — and I feel alienated and resentful.
I shudder to think how much I must have given rise to that feeling in others, back when I could spend money freely.
There is a woman at my synagogue who, as far as I can tell, doesn’t work either for pay or for tikkun olam. She’s probably in her late 40s or early 50s and able-bodied. She plays guitar, keeps house, does crafts, and plays with model trains. I’m not kidding. She married (relatively) late in life — it’s a second marriage for her husband — a guy who is very well off. They go out to eat frequently, travel in luxury, and go to cultural or sports events every week. And she tells me about all of it. As in, “P— really outdid himself this time; we slummed it at the Ritz for the first night of our trip, then went to this luxury resort villa for a week, where all we did was eat great food and sit by the pool.” Sometimes I feel so dispirited in conversation with her; she seems immune to my hints that it’s not that pleasant for me to hear about her luxurious life. (I once referred to myself half-jokingly as Cinderella during one of her particularly ostentatious monologues.) Never once has she offered to come over and keep me company with the kids, or cook a meal for us, or help out in anyway. Not that I expect people to offer help as a matter of course, but I guess I resent both the insensitivity and the disparity that gives it life.
Same deal with another person I know who told me how her husband flew her to Portugal for their 7th anniversary, and oh, didn’t Bill and I have an anniversary recently? (Yes we did, and thanks to our lovely friend Jennifer, we went to the movies together on a Friday afternoon. Even had popcorn.)
I am definitely on the outside looking in a lot now. I wasn’t totally comfortable being on the inside, but I now must admit that the outside is worse. If I ever have the chance again, I will enjoy every trip to the coffee shop.
Yesterday I found myself lost. Not geographically but (ugh) existentially.
At my church job, I sat in the choir loft (alto section, hmpf) and listened to one of the more experienced priests — a man who every week brings deeper meaning to the word doddering — intone his homily, and I thought, Nope, this is not where I belong.
In the early afternoon, we were invited to a party at the home of some friends, a wonderful family. They always throw great parties with plentiful, delicious food and cheerful company. I was in a sour mood, disengaged, and I thought, Nope, this is not where I belong.
The Temple sisterhood organized an outing for a selection from the Boston Jewish Film Festival at a theatre close to my home, and I booked a ticket. Many of them were going to tea afterward at the Sri Lankan teahouse around the corner, but I didn’t even entertain the notion of dropping the eighteen bucks, on top of the price of the movie ticket. The movie, Camera Obscura, was stunning, but the theatre was already quite full when I arrived and I didn’t see anyone I knew. I ended up sitting alone, and while I thoroughly enjoyed the film itself, I thought, Nope, this is not where I belong.
I sometimes go through these periods where I feel like I’m not quite synching up with the world around me, like I’m waiting at the wrong track for my train and wondering why the hell it hasn’t arrived yet.
