Yesterday was my one year wedding anniversary. And along with the expected celebration and love and reflections on a year together, our anniverary brought some unique introspection.
My husband has a genetic disease called fascioscapularhumeral muscular dystrophy. The crib notes version: his face, shoulder, abdominal, and some leg muscles are wasting away. There is no cure, no therapy, no way to halt or slow or change the destruction. The progression is different for everyone, does not proceed at a measured pace, and can accelerate at any time. He may stay as he is for years. He may suddenly lose his ability to grip objects, his ability to lift his arms, his capacity to walk up stairs. He has difficulty lifting his right arm above shoulder height. His diminished hamstrings make it difficult for him to lift his foot behind him, meaning stairs and hills can be challenges. He sleeps with his eyes open. His shoulder blades jut out at odd and unnatural looking angles. He stands with an obviously curved spine.
Living with and loving someone with a progressive disease is a strange experience. Even with the visual reminders of his physical state, it is surprisingly easy to selectively ignore it. It is possible to go long periods of time without the reality of the disease entering into my mind. And then. My eye catches him standing a certain way. I wake up in the middle of the night and see him with his eyes open, staring but not seeing. He catches his toes on a stair. Often this is a minor hitch in my chest, a small jolt of recognition. Sometimes the hit is so hard, so sharp, so bitter, I have to hide myself from him so he doesn't see the pain I feel for him.
Is it shallow that I often find myself worrying about the perceptions of other people? I worry that they are looking at me, wondering what I'm doing. Do other people married to someone who is disabled or impaired feel this way? It seems impossible not to.
Tuesday, February 2, 2010
When people find out that I'm not working right now, I generally get one of two responses. Either they exclaim "having time off must be great!", or they look at me skeptically and ask "so.... what do you DO?". And while that probably says a lot about Americans and our attitudes towards working, that's not where I'm going with this today. The thing is, not going to work every day is fantastic and awesome - and terrible and boring. As frustrating and soul sucking doing something I hated was, it also got me out of the house, gave me people to interact with, and provided some differences from day to day. In the house, time can stretch out, unchanging, for days. Job hunting is dull. No way around it. It is monotonous, it is boring, and it feels like you're getting absolutely nowhere (because you aren't). Add to that the fact that it is the dead of winter in Connecticut - and therefore a frozen wasteland outside - and you start to feel some extreme cabin fever.
So I went to Georgia to visit my parents. They are through and through Northeasterners who decided, upon retirement, to head south to a retirement community. And they have never been happier. They have friends and activities, and seem to fill their days with a mixture of relaxation and social events. Needless to say, I was extremely jealous. How I would love to have a community like that. Why do we wait until we're retired to fill our time with things we like doing? It was hard to come back up here and return to the solitude and isolation. Usually when I return home from a vacation, no matter how great it was, I feel at least some relief to be back. Not this time. This time I just felt down and tired.
A challenge was needed. Something to make me feel accomplished. Bread. But that almost seemed too risky, and in my state I wanted something I knew with some hard work would come out great. A little research and I had leads on two fronts: the no-knead bread published in the New York Times a while ago, which apparently everyone in NYC made and which is reportedly the most foolproof bread ever invented, and braised short ribs. Many, many people have posted about this bread, so another story isn't really needed, but let me just say this: make this bread. It is incredibly, almost alarmingly, easy. It came out of the oven looking like I had bought it from a fancy bakery, and it tasted wonderful. Just the sort of confidence boost I needed.
Short ribs were a safer choice, but I had been wanting to try my hand at them for ages. It is nearly impossible for beef braised in red wine and spices until it is so tender it falls apart into shreds at the lightest touch of your fork to be bad, and after a three hour braise in the oven these did not disappoint. And they made the house smell AMAZING. I think my husband thought he had died and gone to heaven when he walked in the door.
I still feel a bit lost, and bored, and isolated. Bread making success isn't going to solve that. But it did give me something to feel proud of, at least for a little bit.
Tuesday, January 12, 2010
Yeast bread seems like it involves a lot of standing back and crossing your fingers. Only having tried it a few times, it still feels like I'm holding my breath, hoping against hope that it will rise correctly. Over Christmas, I had great success making chocolate babka breads for myself and my family. But it's probably not too difficult to make something taste delicious when it's stuffed with chocolate and cinnamon. I wanted to try a more standard, basic bread, so I tried my hand at brioche. And, much to my delight, it rose! And it looked beautiful! And once I put it in the oven, it smelled AMAZING. Tortuously amazing. I could not wait to eat a piece. Out of the oven, it even looked terrific:
And then. The disappointment. The bread was dry. Really dry. Nowhere close to the lovely eggy-ness that brioche should be. After the rising success, and the salivating I did over the scent..... the disappointment was crushing. When I reread the recipe, it became clear what had happened: somehow my brain had misread 1 POUND of butter as 1 STICK of butter. That's right - I added half the amount of butter that I was supposed to. Sigh. A lot of work lost because I didn't read carefully. But at least a concrete reason for the failure! Which means this will be a try, try again recipe.
On the success side, last night I made amazing spicy curry coconut mussels with mango couscous. The recipe came from the Top Chef cookbook, and while I regularly watch Top Chef and drool over the deliciousness, I actually don't remember this recipe. Mussels - and shellfish in general - always seemed to me like one of those things that you only have in restaurants. Too pricey, too difficult. But they could not be simpler. Seriously, this recipe came together in 25 minutes - including prep time. And the mussels, bought from the this terrific fish market, were $2.99/pound, and very fresh. As for the sauce made to pour over them - I wanted to lick my bowl at the end, it was so good. This was a success in multiple ways - a great find of a simple, easy, quick recipe; a terrific alternative to the usual proteins; and a real confidence booster in my cooking quest.
One thing I am not great at it substitution. I go to the grocery store with a list, but if for some reason they don't stock one of the ingredients I need, I'm often at a loss as to what I could use as a substitute. I have the most difficulty with cuts of meat. Yesterday it was completely frustrating to go to the grocery store and not be able to find beef brisket. Not knowing what to do, I bought the only large cut of meat I could find: top round. When I got home and read up on it, it turned out that this was not a satisfactory substitute, as top round is far leaner than brisket, and will therefore be much less tender. As a novice, this drives me crazy. The supermarket I go to is quite large, and very busy. I don't live in a rural area. But I am often in search of an ingredient that they do not have. I realize that supermarkets offer a sacrifice of quality for convenience that's necessary today. If I was working, there's no way I'd have time to drive to multiple stores to complete my list. But it's frustrating to not have an alternative. And extra frustrating to have my Southwestern pulled brisket start out at a disadvantage. In the end, I made the recipe anyway - I'll update on how it went!
Thursday, January 7, 2010
Even as a biology major in college, my two favorite classes were "Modern Drama" and "Survey of the American Novel". They just didn't seem like work. No studying, no memorization, just sit down and read for a while. For someone so otherwise absorbed in facts and numbers and right and wrong answers, those classes were a welcome break.
Now, I go in and out of phases with reading, occasionally tearing through multiple books in a row, then reading nothing for a month. Others would probably call me a reader. But I find I don't often make much time for it. Until I'm really absorbed in a book, other things seem to get in the way of me just sitting and reading. I've tried joining book groups. But I don't really read the kinds of books favored by book clubs. I don't mean that in a mean way. Maybe I just haven't found the right group, but their reading lists all seem to be dictated by what bears an Oprah sticker - so many books about a woman overcoming a tragedy, or about finding your true self, or about female friendship. Not my thing.
So, much like my cooking class, I'll be undertaking a self directed book club. To begin, my selections will be taken from The Millions list of the best books of the last 10 years. As I read I'll update, give reviews, discuss (with myself, I suppose). A one woman book club, as it were.
Wednesday, January 6, 2010
I'll admit it. I'm married to someone who still goes to a store and buys CDs. Combined, we have hundreds. And I'm conflicted about what to do with them. Probably 3/4 of them are on our computer. So why keep the discs? Why not give them away, and free up the space? Well....because I'm old. Not really. But old enough to believe, somewhere in my head, that I need to hang onto those physical discs. So on shelves they sit, unopened, for weeks and months and years. I just can't seem to let them go.
I suspect that they may be something that, further into this project, I will revisit. But for now, after sitting and staring at them for a while, all I end up doing is culling, getting rid of 12 that I never listen to and don't like anymore.
This is, in essence, an exercise in exploring the hold that objects have over my life. I wish in this post I could announce that I ripped the remaining CDs and then got rid of them all. But I didn't. But sometimes journeys start small, right?
I never thought of myself as much of a cook. As a single girl out of college, I dabbled in cooking. The sort of things someone with a half size stove, no money, and limited cooking supplies could make. Stir fry. Pasta. Box brownies.
When I first moved into my house - with an actual (though still small) kitchen, at first I was thrilled with the possibilities. Homemade cakes! Roasts! Complex three course meals served to adoring friends! I'd be amazing.
But then, reality. As a grad student, I still hadn't solved that "no money" thing. But that can be worked with. The real problem, I found, is that cooking for one stinks. There are cookbooks and websites and blogs out there that will try to tell you that this isn't so. That cooking for one means creativity and freedom. Eat what YOU want! The truth is, though, most recipes don't scale down well to single size portions. Sure, a single chicken breast or a small piece of fish will work. But a stew, or a roast, or a dessert? Not so possible. My sister is one of those people who is content to make a big pot of something on Sunday, and then eat it all week. I am not that person. So I cooked here and there, but was more likely to sit down to a dinner of frozen pizza or bread with cheese and tomatoes. My forays into cooking were amateurish at best.
The feminist that lies within me hates to admit that my real desire to cook started with a man. It just seems so 1960s Betty Crocker. But there it was. He moved in, and dinner was no longer a random selection of things from the fridge eaten in front of the TV. It was a time to sit down - at an actual table - and talk to each other. So I started to cook real meals. And I made some good ones. And some flops. And a lot of mediocre fare.
Faced with an indeterminate amount of time off, I have recently decided to put myself through a sort of self directed cooking class. Not only to cull through the pile of recipes and find the good ones, but to really learn how to be a cook. How to chop an onion. How to cook a really great steak. Tackling things that I didn't have the time to do - pulled pork, braised lamb shanks - or that I was afraid to try - yeast breads, pastries, hollandaise sauce, poached eggs.
Since it brings some sense of progress and accomplishment to track these sorts of things, quest #2 will chronicle my successes and flops (hopefully with pictures) throughout the year.
Tuesday, January 5, 2010
Today's purged items: 3 biology textbooks from college.
I have moved these 4 times since college. Why? I can't remember the last time I opened one of them, and their position on a bottom shelf in a rarely used room - covered with a coating of dust - confirms this. And yet, I can remember looking at them every time I moved, considering throwing them out, and then deciding to keep them. Is it because they cost me so much back in the day that I feel strange about just throwing them out? They're hopelessly outdated, 14 years later, so I can't still think they'd be useful. Maybe I kept them because I was going to grad school, and I thought they'd come in handy?
Asking some other people about this, it seems a large number of people my age have a shelf full of textbooks gathering dust somewhere in their homes. Is it guilt over getting rid of them, and therefore some past part of our lives? Nobody seemed to have any explanation for why they kept them, but most had. Curious.