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.

Wednesday, July 7, 2010

Who do you want to be?

It's been a really tedious day... ALL day sitting at the car dealership waiting for tons of things to be done to the car... about 10 a.m. to 6 p.m. Michael came with me, which was sweet but unnecessary, really. And we sat, and drank coffee, and did computer things, and chatted with an interesting and nice guy who used to work for Microsoft and just happened to break down near here, and listened to an endless conversation about duplicate bridge... and I like bridge, but eek... and all and all, it went on too long.

But I had lots of time to think. This is what I've been randomly thinking about lately: who do I want to be? And shouldn't I know that by now?

My almost-16 year old niece was here a couple of weeks ago, and I took her to the spa, and we had our toes done, and some other things, and then we went to the mall, and I bought her some clothes, and then we went to Sephora, the make-up/perfume place. And she said, "I'm the kind of person who wears a different perfume every day." I thought... (1) I've always been the kind of person who wears a single, signature perfume, and (2) maybe I'd like to be the kind of person who wears a different perfume every day? And then I thought, ok, this is a trivial thing, but this kid knows more about who she is and who she wants to be than I do, and I'm more than three times her age. And then I thought... sometimes this seems like everything that's wrong with my life, this not knowing what I want to be, or how to be it. Wrapping myself around the latest thing that attracts me. Finding my own identity in these things.

This bothers me, and leaves me uncertain, and makes me wonder when, if ever, I'll get to be who I really am... not the person that the people around me shape me into. Because I am not loving that person all that much these days....

Tuesday, July 6, 2010


The Northeast heat wave continues... 93 at the moment, and humid, and really, really tiresome. I just don't want to do anything. Trying to plod along getting something done. Mostly just knitting and watching stupid TV on Hulu in lieu of actually moving and sweating.

Michael's porphyria attack is worse today... bad neuropathy yesterday, and he woke up this morning and seriously didn't recognize me for a moment. This is scary, really scary. Shades of his last hospitalizations, plus a sign that the neurological symptoms are worsening. And his weight was up, despite having a reasonable food day yesterday. So... we see the doctor as planned on Thursday, and push hard for the Mayo referral, see what we can do to get that in the works. I don't know what else to do.

It's all pretty tiresome. I was thinking yesterday... the greatest truth, in a lot of ways, is that youth is wasted on the young. I've been watching the past series of Greek... if you haven't watched this, it's a pretty formulaic but sort of charming ABC series on fraternity/sorority life at an Ohio university. And I will never, ever admit to enjoying this kind of show.... but ok, I do; it's a weird guilty pleasure. But it's also my childhood and my college days, in a way, or what they might have been if I'd known what I had when I had it. I remember back to that time, and it was so... carefree, although I would never have thought it at the time. That self-absorption of youth, and all the things that hadn't happened yet, and the future holding limitless possibility. And one day, you wake up, and the horizons aren't like that any more, and people around you are aging and dying, and everything is about health and problems and worries. We ought to live backwards, like Benjamin Button (not that I either read the story or saw the movie), living in reverse, having things become better rather than cruelly worse. Yeah, I know, it's all a little melodramatic... but it's hard to keep putting a positive spin on things. Yes, they are better than they were a year ago. But it's a long, long way to something that feels like a normal life.

And I so long for that.

Monday, July 5, 2010

One of those days

I didn't feel like this yesterday. I probably won't feel like this tomorrow. But today, everything is a little bit much.

Michael slept badly and has been feeling bad all day. I'm sure it's another low-grade porphyria attack... because his weight was actually lower yesterday and the day before. And this is starting to be the pattern, with a nauseating, horrible regularity. As soon as he cuts food enough that he starts to lose any weight, this happens. And what then? No alternative except to carb load, and it's always quick carbs, and the worst things for him, and I have no idea what this is doing to his blood sugar. It makes me cringe. It makes me sad and angry all at once. And the ugly part is that it makes me resentful as hell on a petty, stupid level, too.

Because I'd like to have a legit reason to go have a Whopper and fries and a chocolate shake. (Actually, none of those things appeal to me at all, but it's the idea...) The unpleasant fact, for me, is that in order to lose weight, I have to be eating less. A lot less. On a low-carb diet, I maintain. If I add any real carbs at all, I then start gaining, and that's exactly what's happened over the last year or so. To actually lose weight, I have to watch every calorie. And get the exercise that I'm not getting. The ugly truth is that you can lose weight on low carb pretty easily if you're young, and you haven't done it before, and your metabolism isn't already screwed up. For the rest of us... it's different. It's not so easy.

And I have no choice. I have to be well enough to take care of both of us. There isn't another choice, and that means getting this weight off, so that my hip doesn't hurt all the time, so that I'm not so tired all the time, so that everything is not sure a huge deal all the time. I have to do this.

But I'm hungry. And I hate it, and it's hard for me to be hungry and not be resentful. At least some of the time.

Sunday, July 4, 2010

The 4th of July

It was broiling hot here by yesterday afternoon, and we were both having a pretty bad mindset day... me because I just couldn't work up the motivation for anything, and Michael because he gets up in the morning and feels ok, but by evening, he just feels terrible, and everything is such an effort. So we went out to a movie... the two really good things that have happened, in terms of quality of life in the last few months are that Michael's started driving again (YES! I can sit and knit, plus I really think it makes his mood better, though he says no.), and he's been willing to go to the theater. So we went to see Toy Story in 3-D... FUN movie, nearly as good as the first one, I thought, plus there's a Totoro toy which won my heart. Ate some movie popcorn because we hadn't had time for dinner before this idea, and regretted it... but not a ton of popcorn, so ok.

Anyway... I got out of the theater, and went right back into that wretched headspace that plagues me these days, where everything is about sadness and loss and regret. It was a beautiful night, warm and clear, and you can almost touch what it felt like to be 16 and have all the promise and infinite possibility ahead of you, and these days for me, that's a combination of joy and deep, deep bitterness. It takes me back to missing my mother, to missing someone I loved and lost, to feeling like my whole life has taken these unexpected and awful directions. And it just feel bad. I am working very hard these days on trying to keep myself present, to stay in TODAY and not the infinite past.

I was doing just that leaving the grocery store, chanting to myself, "stay present, stay present...", and I stepped outside, and there were fireworks everywhere. So we sat in the grocery store parking lot, and watched the fireworks, and it was... if not magic, at least it was here and now.

So that's the task for today. Stay present.

Weight the same as yesterday, not surprising with popcorn and late dinner. Michael actually down a little, which is very good.

Saturday, July 3, 2010

Summer Saturday

I miss you, too, lovely anon person. It means a lot that you're thinking of me.

I keep trying to write, but I don't know what to say these days. I don't know where to start, don't know how to focus. So much has happened over the last few years, over the last few months, over the last few weeks... and yet it's all the same as when I started, in a way. I don't know where to start. And really, I think what I need to do is just start over.

When I started this blog, Michael and I had just started on low carb. And in the two plus years since then... well, he lost a lot of weight, I gained a little weight, my mother died, Michael came close to dying, and in the process, he finally got accurately diagnosed with what was really wrong, hereditary coproporphyria. Making him genuinely rare, explaining a hell of a lot of his life story, and, ironically, making him one of the very, very few people in the entire world who really can't eat a low carb diet. Sometimes you just have to laugh. Or put your head through a wall, I guess.

And so since then... we've been trying to adjust. And it has not been easy. There's a lot more to it, and I'll write about it eventually, but the very short version is that he's gained a lot of weight and continues to gain weight, and is, I think, usually having low-grade porphyria symptoms of one kind or another. But not the scary stuff; that's the good part. So he's better, really better... but at the same time, we have to find a way of stopping the escalating weight. We're trying to get a referral to the Mayo Clinic; they have a porphyria clinic, and maybe they can help us. It's hard to know what to do. I've never felt quite so much at a loss about what to do.

Then there's me. The carb-fest that's resulted from Michael needing to eat a high carb diet has not been good for me. It is much more difficult for me to skip this stuff when it's around all the time. Yes, I've gained, and I feel like hell, and I'm not getting any exercise... and all these things aside, it's just been a really, really rough spring. I've been sick and exhausted, and I feel like all the stress of the last couple of years has all sort of exploded... everything I just sat on while I had to be the strong person who coped. And it's taken a long time to get anything like equilibrium back. I feel like I'm just starting to edge there.

So... I don't know where to go. I don't want to spend this blog whining about how crappy everything is... especially because it's not quite so much, these days. But somewhere this stuff needs to be said, and it can't be at home, most of the time, for so many reasons. I'm going to try to be back here.

And on the weight front... I'm trying for compromise. Trying to keep the mostly low-carb, which makes me feel better. But back to food diary, to writing everything down again. It's good for Michael. And it's ok for me, although when I gave up charting food years ago, it made me REALLY happy. It was much easier for me to not be so obsessive about food. But it's what we have to do to try to get back on some kind of track.

We'll see what happens.