Tuesday, August 31, 2010

Nothing, really

Every single thing we do changes us. Every step that we take, until we're so far away from the origin that we can't remember how we started, what we were then.

I was at my father's house recently for a week of semi-vacation, and my sister had unearthed a lot of the things that my late mother had kept. Things of my childhood, but mostly things from high school. Some things that just made me shake my head and wonder why on earth she'd saved these things (like letters I'd written to her during fights. I threw those away unread.), but mostly things that took me back to a past that I'd mostly forgotten. I still can't remember who she was, the girl who thought she could make music, the girl who was confident and brave even in the face of a lot of reasons not to be. The girl who had never been told that she couldn't achieve anything that she wanted to.

And I look back at that now, and part of me just wants to cringe. How could I have been so young, so naïve, so laughably confident when others must have known that the things that I wanted to do were nothing but fantasy? Another part of me, the part that I'm finding just as I write this, is angry for her, angry and sad and defensive, and mostly I just wonder what happened to her? Where did I go from that kind of confidence to what I am now? When did I stop being brave in that young and foolish way?

These days, I feel like everything is just eroding me, wearing me away until there's little left. I think often that I should just end this blog; it's lost its original purpose, and there's little left but these constant futile musings. And my sadness, which isn't exactly helping anyone else.

Thursday, August 5, 2010

A Failure to Fly

Sometimes I can perform that magic act, walk high on that high wire, see myself for a moment as the person I want to be. And I have this illusion that I'm getting better at it.

And then something happens, and I fall… Icarus flying to close to the sun, all the wax melting and dripping, and I fall hard and fast, and I forget that I could fly.

Things have been close to good lately. Really so close that I could touch them. Michael has mostly been feeling ok, and we've been working on the weight, and I've had the energy to work on getting the house organized… it's been wonderful getting the newly-repaired living room and dining room back to something civilized. Everything seemed… all right. Pretty good. Possible.

And then yesterday… Michael was ok; he said he was feeling happy. But I was low and sad; something set me off, and I would have been ok in a while, but right at that moment… not happy. But I forgot that I'm not allowed to be sad. I forgot that I'm supposed to be the cheerleader, the happy person all the time. I let myself be sad… and I let myself have a glass of wine while I was making dinner, too, and that's always and inevitably a problem, especially if things are already tense. And it all went to hell, quick and fast and hysterically, and you could just smell the wax and burning feathers.

I blame myself, although I'm certainly not the only person at fault. But I know that I need to keep these things to myself. I just couldn't manage it yesterday.

Worse, last night and today, I'm trying to cajole him into some kind of happy, and it's not working, and it's making me feel a thousand times worse. I thought that the balance had tipped for a moment, but it didn't… or something else set him off, and like the marble, I couldn't quite get escape velocity, couldn't quite get him out of the bowl. And so here we are, back in the bottom, clinking against each other, unable to get any kind of momentum up.

I can't bear it. It's stupid and foolish, but it just makes me want to crawl into a hole and die. I need to separate myself from all this, but I don't know how. I don't know how to do anything like take care of myself without doing the things that would sever the bonds entirely, things that truly would be a betrayal. There is nothing that I can do or say that would not make this worse, and trying is ripping my heart out.

And it's two days later now, and things are better on the surface, but they are really no better in reality. I am filled with despair, which sounds melodramatic and pathetic. But I can't find other words.



Monday, August 2, 2010


It's hard to know how to feel about anything these days.

On the one hand, Michael has been well, in a certain sense, for more than six months now. It's the end (maybe) to those years of mysterious disease, of him sleeping most of the time, the weakness, the delirium… all the symptoms of undiagnosed porphyria. On the other hand… we still are only fractionally closer to a way of eating that will allow him to lose weight without losing his mind… in this case, quite literally. And as a result, his weight has ballooned, in every sense of the word. He's about 160 lbs. above his lowest weight, and all of that in the last eight months. It is staggering. In every sense of the word.

Our latest attempt to level things out is working, in some sense… he is eating every 2-3 hours, small meals… and when he does that, exactly that, plus stays pretty gluten-free, his weight starts to go down. But it doesn't take anything much to screw it up. Yesterday, we went to the movies, shared a medium popcorn between three of us and then went out for some Indian food… and today, his weight is 5 lbs. higher. Sure, that's illusory and water and day-to-day fluctuations. But it is still really depressing. Plus the constant, constant, constant degree of vigilance required…any sort of relaxation and fun, and we're back to square one.

But what can you do, really? Except try another day.

Try another day.

It's a summer night, and I want to be outdoors, in a field, listening to a band, drinking a beer, and dancing.

I don't think that this will ever happen in my life again.

I am too old and too young all at once.

Sunday, July 25, 2010

Escape Velocity

Another restless night. Michael didn't sleep well; did back bothers him all the time since he's regained so much weight. Plus the two new kittens, who are living in the bedroom… unbelievably adorable, but wanting to play at the wrong times. Of course. Fortunately they're still so tiny and totally cute that no one minds too much. But Michael got up early, and then I got up, and he wanted to go back to bed… and I feel lousy, so I tried, but my head was just spinning into a thousand unhappinesses and resentments, nowhere good. So I got up and made a cup of tea, and ate some cottage cheese and dried apricots, a combination that doesn't fit into any eating plan that I know of.

And thought and thought and thought. About escape velocity, about that analogy that always hits for me, of a marble being spun in a bowl, never quite getting up enough speed to make it out, always falling back to the center. It's what I feel like… I have a few good days, a few days when the past doesn't seem so real, or I can visit the happy parts, when I get things done here, and it all seems possible and manageable. When it seems likely that Michael will get truly well again, and we'll have a real life, and I'll lose weight, and it will all be… I don't know. Perfect and wonderful, and we will live happily ever after. And then there's a day like yesterday, a morning like this one, when it's all too much. When I see how little things change, and I hit that sure marker of depression for me, that counting of how many days I have left. I want to talk to someone about this. I want to talk to my mother, to say, how do you cope with this, what do you do? But even if it were possible, the words would stick in my throat, and I wouldn't ask for help. I never do. I never have.

In a way, the worst part of all of this is that I feel so stuck. I feel like I'm in this rut, and it's more about the psychology of it all than about the actual physical constraints. I am learning nothing from this; I am feeling nothing but pain. I don't know where to go with it. Other things… I can see how much better I'm getting at some kinds of things, about letting things go, not needing a resolution to every little quarrel, at just existing on my own, not so attached to everything. All the years of not-exactly-regular meditation practice, of breathing and metta prayers has done something for my ability to coast through the day to day without getting so hung up into it.

But instead, I get caught in the past and the future, two meaningless places to be. I run the movies of the past in my head, and sometimes they're entertainment, a connection to a different world, sometimes a way of understanding. But there are deep, dark traps, and there's nothing good once you hit them. They're all about resentment and anger and loss, and it's hard to remember a time when my life wasn't about those things, on some level. And the future… well, who knows? I don't think I have the energy to speculate.

I'm just tired. Really tired.

Saturday, July 24, 2010

Light of Heart

I went last night to see a musical with a friend of mine. The play was called Girls Night Out; I think it's touring this summer, and it was very fun if not exactly a masterpiece of the theater. The plot is basically an excuse for the women to sing a lot of classic songs, I Will Survive, At Seventeen, Cry Me a River… great songs to just belt out. The loose plot is about four women and their dead friend and how their lives have evolved over the last 22 years… which really makes it sound a billion times more serious than it actually was, especially since really they could have just skipped the plot and sang and it would have been equally good. But anyway, there's Kate, the nerdy, gawky kid, and Anita, the depressed one, and Lisa, the insecure one, and Carol, the party girl who never shows her friends the pain inside. And at intermission, my friend asked which of those people I'd been in high school. And really, the answer was, none of those people. I mean, I'm the most like Carol, but I never in my life have had the ability to just be fun, to be a party girl, to cut loose like that. Even with alcohol, I'm mostly morose, and everything I do, everything I am, seems to be about this relentless seriousness.

And I've always been like this. Always too serious as a child, always the one at college parties who'd just be lost and bored, and would go home and read. A little less so in grad school, which was filled with people Just Like Me. And now… well, still that way, no knack for small talk, no knack for chit chat, not good at lightness.

I've been musing about this post for days… started Thursday, and it's now Saturday, and I'm betting on Sunday before I finish.

And it's Saturday again.

And all this time, I've been trying to think of what I mean, about this lightness thing. I don't really know. I just feel so sad all the time, and worried, and when I'm not sad and worried, I just feel overwhelmed. This house, the garden, the pool, my job, the eBay business, my consulting work… and then the things that really come first, Michael and my son, and the day-to-day stuff. Just making it through the next day. You can't lose weight by thinking about losing weight. I mean, it doesn't hurt, and usually there has to be some thought in there somewhere, but ultimately you have to actually DO something. And it's the same thing with everything else. I look around me, and I think, tomorrow I will do this, tomorrow I will clean all this up and finish my work and finish knitting this sweater, and I will be beautiful and strong and dance and laugh. And the next day is the same as this day.

So usually at this point, I do the pep talk thing… how tomorrow really will be different, how I will try harder, how it will be ok. But I don't feel like that today. I feel like curling up and crying and wanting someone to fix it all for me. I want my mother… the mother that my mother should have been, if her life wasn't a lot like this, too. I want a thousand things that I can't have, and today… it all seems too much to even try.

But I will.


Saturday, July 10, 2010


Yesterday was another busy day, and a terrible food day… I was off for most of the day with my knitting friends, came back to find Michael in a foul mood, long story short, didn't get to thinking about dinner until about 9, so we went to Applebees, ate far too much food, drank yummy lemon drop martinis (me, not him), and generally had a nice time… and then of course, I came home and felt like death.

And so of course, this morning, I'm thinking and trying to figure out how to get back on track and STAY that way. Plus there's the endless problem of diet and Michael… and I'm not talking about the constant weight gain he's experiencing now so much as the problem of porphyria and what might have an influence on it. In the porphyria group that I've been reading a lot of lately, there's a lot of discussion about eliminating anything that's processed plus wheat and so forth. And anything synthesized, like vitamins and drugs. I'm not so sure that a lot of that is possible… and I'm hoping that if we can ever try the heme therapy, this all may not be go necessary… but it would be interesting to see what kind of an effect eliminating all of this, plus all spicy food and so on, would have. If he could tolerate the boredom, which is the biggest issue, I think. It's particularly hard for him to eliminate wheat, just in terms of it getting rid of so many of the things that he likes (and are good carb sources, too). But I've long said that he's wheat-intolerant. I just didn't know why.

I don't know. I'm buried in work, and everything seems to require a kind of attention that I can't work up. I'm tired all the time. I'm way, way too fat. I'm out of shape, more than I've been in a long time, and my hip is mostly bothering me again. The house is a danger zone, pretty much. And where do I go from here?

I think for today, I'd be happy if I just got my book reviews written and a little cleaning done, and the plants that I haven't planted actually in the ground. That would be kind of a lot. And eat reasonably. And write it down.


Thursday, July 8, 2010

Musings du jour

I keep musing about this "who do I want to be" thing. I've had a lot of musing time lately… we had another long day, doctor and then oncologist this morning, then hanging around all day in Rochester killing time until therapist appointments this evening. With the amount that we've been out lately, you'd think that we were actually having an interesting life.

So… when I was 18, this is who I wanted to be

Kelly Capwell. Actually Robin Wright, playing Kelly Capwell on the now-dead soap opera, Santa Barbara. I thought she was the most beautiful thing that I'd ever seen, and I still kind of think that…you know, in that sense of, if you could pick exactly who you wanted to look like, I'd look precisely like that. Tall and thin with long, straight blonde hair. And Kelly's storyline in the beginning of the show (I actually watched this soap opera from the very beginning, and I'm sure that I'm just trashing all my seriousness cred by even talking about this. But I was about 18, ok?) was that she was the very sheltered innocent daughter of this mega-millionaire, something-else Capwell, and she was madly in love with some poor but gorgeous guy who was trying to win the approval of Daddy Capwell, whatever his name was. Yeah, it's an old, old, old and really trite story. But still a good one. And that's who I wanted to be, the fairy princess. Robin Wright was that, too, in The Princess Bride.

I wanted to be the princess, or the ballerina (we were watching a documentary on Russian ballerinas the other night, and Michael said, I didn't think you were interested in this. But of course. When I was 6, I was desperate to be a ballerina and have pointe shoes and a pink tutu. Unfortunately, I was also chubby and uncoordinated, and they don't start you out with the tutu and toe shoes.)

That was before the days of the Disney Princess franchise, and these days, it sounds beyond silly to say that you wanted to be a princess… and it probably did then, too. And I turned out to be the ogre princess, anyway, like Fiona in Shrek. The trouble is, I've never given up wanting to be that princess. Beautiful and thin and blonde and cherished and taken care of. I think because I never had that… a child with too much adulthood too early, a father never really there, a mother occupied with other things, no one to trust or look out for me. Not a sob story there, just a description of reality. So you long for what you don't have.

But here I am. And in some ways, my cherished dream is not any different from what it was when I was 18, although I would never have admitted it, then or now.

So what do you do next when you wanted to be a princess? There's not a lot of alternate dream choices for "failed princess."

Nobody Loves a Fairy When She's Forty.