biked the Portola Loop today!

It's nothing much, about 20 miles of gently rolling hills, but the Portola Loop is one of my favorite short rides--and I haven't been able to ride it for a LOOONG time on account of my knee injury. So it's wonderful to know I can bike it again.

It's all part of a campaign to get back into shape. It's been really depressing watching the fat build up and the muscle wither because of the knee problem, so I'm trying to add more exercise into my day--CAREFULLY. It's hard because my "normal" activity level would trounce the knee instantly, so I have to keep reminding myself to go slooooow. I know exactly what I need to do to get back into shape, and I'd really love doing it--I just CAN'T.

Well, there are worse frustrations.

The Pride Parade: I didn't get to see as much of it as I would have liked. In fact, I didn't get to see much of it at all. I'd forgotten one of the basic truths about being five feet tall, which is that it's darned hard to see anything unless you're in FRONT. We got there too late to get a prime position, so outside of the little I could see while craning my neck on tiptoe, I mostly missed it.

That being said, I still had a HUGE amount of fun--half the fun in this is people-watching, and boy, were there people to watch! Not as outre as Folsom Street Fair (the leather festival), but lots of drag queens, people decked out in rainbow this-n-that (I bought a fabulous rainbow hat for the occasion), and costumes galore.

(By the way, did I mention that a photo of me from last year's parade is on the SF Pride homepage? Go look at it quick--I imagine they'll take it down soon. I'm the one in the rainbow outfit just to the left of "Monitors Wanted". A friend pointed it out to me. I'm also in the SF Pride 2005 magazine, in a photo collage--I got three copies of the magazine to send to mom and friends.)

I also bought two SF Pride T-shirts while I was there (to tie-dye), and briefly considered a SF Chronicle commemorative T-shirt ("We come out every day.") Lots of other stalls selling stuff, and of course the AIDS Lifecycle booth--plenty to see and do.

After that I went off to the tie-dye party and proceeded to dye two T-shirts and one bathrobe. The T-shirts came out astonishingly well--one was a spiral design, one came out as an eight-fold symmetric starburst--but I'm less happy with the bathrobe. I'd forgotten how much dye terry cloth absorbs, and ran out of dye, so it came out with big blotches of white. I'm considering donating it to a friend who likes tie-dyed bathrobes, and trying again with a new robe. I have an idea for how to dye it that should look just fantastic--stripes of color running up and down the robe, rather than a spiral as I was attempting.

Life is too damn short. I want to try everything.

I've started a new piece of knitted lace

This one is my "mindless" piece: it's a commercially spun laceweight alpaca yarn (Misti Alpaca) that I'm knitting up out of a Japanese pattern. It's a pentagonal shawl, with a pentagonal peony repeated six times (one center motif and five pentagons surrounding it). I may knit the whole shawl, or I may just knit the first motif. Or I may knit the first motif straight out of the book, then try my own variations for the others. Haven't decided.

I'm not especially interested in coming out with the world's most beautiful shawl--I want to understand Japanese knitting and I want to see how one knits a pentagon. If I can figure those out, I'll be happy even if the shawl itself is a mangled mess. :-)

I've also decided that I will probably restart my "tiger lily" shawl in a commercial yarn...the space-dyed-roving stripes are coming out beautifully, but they are so strong visually that they are going to overwhelm the knitting pattern, I think. So I think I will redo it with white silk yarn, then handpaint it once it's finished. I'd handspin all the white yarn except that I really don't have time to do that, work, and the book project...so I may wind up sticking with commercially spun stuff. (I wish I could find a small spinning mill capable of spinning super-laceweight yarn. Unfortunately the finest they spin seems to be about 3000 yards per pound, which is really quite thick for my tastes.)

Finally, I've started transcribing tapes again for the book on Lifecycle. I bought one of those little transcription machines with a foot pedal, and it's made transcription SO much easier...to the point where it's almost relaxing. I had been typing furiously trying to keep up with the tape (and always failing, of course)--now it's easy to back up, rewind, pause, etc.

Still, it's very slow going. I type at 110 words per minute, which is pretty darned fast, but it's still taking over three hours to transcribe one hour of tape. With 80 hours of interviews, I may be at this for awhile.

Pride tomorrow. I have to be out of the house by 8am to make it up to my friend's place in time: they want to see Dykes on Bikes, the butch leather dykes on motorcycles--but since Dykes on Bikes traditionally leads the parade, that means getting up early. I'm not complaining--AIDS Lifecycle is traditionally third in the parade (after Dykes on Bikes and Mikes on Bikes (the gay answer to Dykes on Bikes), so it means I'll get a chance to see ALC. :-)

I'm really looking forward to it--Pride is probably the biggest event in SF all year, and it is damn impressive. The entire city turns out for it.

I've given up on the Hawaiian orchid origami (the instructions are abysmal), but am trying to fold a lobster and a squid (cuttlefish).

Tien

Strawberries, balsamic vinegar, and purple basil...

...make a really ROCKIN' jam. The balsamic vinegar adds depth and the basil a hint of spiciness, enhancing the strawberry-ness of it all. (Don't use much of either--a tablespoon or two of the balsamic vinegar, and one or two small sprigs of basil. Take out the basil as soon as you think it might be enough--it has a strong flavor and you can't get it out.)

I also made a batch of honey-strawberry jam, but don't like it nearly as much--the honey interferes with the strawberry flavor, IMO.

Nothing much going on today...nice quiet day before the Pride Parade and the tie-dye party tomorrow. I may sit down and try to fold an origami orchid--got a book on origami while I was in Hawaii for the cacao symposium.

Tien

I joined the Human Rights Campaign today...

...it's one of the oldest and biggest gay-rights organizations. I'd been thinking of joining for years but never quite got around to it, so when the earnest young man turned up on my doorstep with a clipboard, I signed up immediately. And took one of their bumper stickers (dark blue with a yellow = on it) to put on my car.

It's Pride Week, of course, with the SF Pride Parade on Sunday. This will be the first time in three years that I haven't been riding as part of the AIDS Lifecycle contingent, and I find myself with curiously mixed feelings. I'm sorry I won't be riding, because it's tremendous fun (especially with the crowd cheering for us), but it's also my first chance to see the Pride Parade in all its glory--when you're in the parade, you don't get to see all the floats go by. So I'm really looking forward to it.

And joining the HRC seems like one of the best possible ways to celebrate Pride. So many of my friends (and mentors!) are gay and lesbian--I should have done this years before. Gay rights are very important to me, it's about getting fundamental human rights for my friends and (chosen) family.

I have now decided that I don't really like the color combinations on the tiger shawl I've been handspinning--the color striping is great, but it takes away from the lily design. So I'm seriously considering shifting to a white silk yarn and handpainting the shawl afterwards. I'm knitting test swatches in a 20/2 machine-spun silk yarn. If that works, I may knit the tiger shawl in machine-spun yarn rather than handspun...mostly for time reasons. If I weren't working on the book, I could afford the time to handspin it, but I do want to finish it in a year or two.

Still musing over it, though.

I am also fairly happy today. I spent an hour talking to the VP whose group I'll wind up in post-reorg, and upon delicately inquiring what layoffs were going to be involved, he said, "Let's just say that you and I wouldn't be having this conversation if I thought you wouldn't be here in two weeks." Whew. I'm not on the list. Major relief.

I am, however, not happy about the constriction of my role, and I plan to talk to my coach/career counselor about it next week. Hugh has been incredibly good at helping me get my life back together (because the whole thing exploded messily about two years ago and it's nowhere near back to normal yet) and also at giving me advice on corporate maneuvering. Oddly, he was the guy who got me back to dating. (All these wonderful gay men in my life have been trying to get me back to dating--which is very sweet of them, since there's absolutely NOTHING in it for them.) I had been waxing morose over the fact that I really wanted to date a pair of bi guys, but where on earth was I going to find them, and he said, "I know just the place!" and pointed me at Craigslist. Lo and behold, there they were.

Anyway, a lot of what he's doing centers around work-life balance, or more accurately, reminding me that there is such a thing as fun. The last couple years have been so difficult that there hasn't been much room for fun--mostly just a desperate struggle to survive. So he keeps reminding me to do things like go out for movies and such. Hopefully at some point I'll start enjoying living again.

(One of the reasons I am pessimistic about my chances of reaching sixty is that it isn't just a matter of a single crisis; it's a year or two of acute suffering, and then two or three years of slowly rebuilding my life from ground zero. Then I get four or five good years before my life crashes again. Makes you wonder if it's worth it, it really does.)

Tomorrow I'm going up to the farmer's market, and then I may continue on to Dharma Trading Company in San Rafael. A friend is having a tie-dye party on Sunday (after the Pride Parade) and I want to see if they have anything interesting to dye...also, I want to see if they have any 20/2 silk yarn, or reeled silk yarn, or something I can knit with.

I did get a nice white cotton bathrobe already, though, and I plan to tie-dye that. I bought a wonderful fluffy white bathrobe while I was in college, and had it tie dyed--it's gorgeous and I love it, but it's also 16 years old and threadbare. So I'm going to try dyeing myself a new one. If the first attempt doesn't work, I'll just overdye it black, and discharge-dye it.

And if I have time, I'm going to try that strawberry-balsamic-vinegar-purple-basil jam I've been wanting to try. Life is pretty short, though.

Tien

Thanks, Suz.

It's nice to hear from someone else who's bipolar--at least now I know I'm not crazy. (LOL) It's nice to know other people are going through the same things, too...even though I wish you didn't have to deal with it, either.

I'm a little luckier than you are in choice of geography--California doesn't allow insurance companies to exclude pre-existing conditions, so if I can buy insurance at all, it will cover bipolar disorder. Equally fortunately, I'm eligible for membership in IEEE--and if you've belonged for two years or more, you can buy their group health insurance. Hot dog. I can get insurance.

But the frustration for me has been having to struggle with this all by myself. I'm thinking of joining a support group, at least temporarily.

Along happier lines, this has been a really productive week for me--I just started a new medication (Abilify) that has FINALLY got me back to something like my previous self, energy-wise. (Not to mention allowing me to sleep--the previous med gave me such bad insomnia I turned into a zombie.) So it has been a productive week, and the best news is that I'm un-stuck on the book! I've started transcribing interviews and am feeling thoroughly un-guilty about starting back to work on it. (I had been consumed with guilt for not having gotten it done yet--ridiculous, I know, especially since I've been contending with severe bipolar attacks the last two years--but if you're pretending to the entire universe that you don't have an illness, then you can hardly make allowances for it, can you?)

I've also made two batches of apricot jam, one regular apricot-orange-blossom-honey and one with a vanilla bean thrown in, and some vanilla yogurt. (I'm lactose-intolerant, so I have to make my own yogurt.) If you're detecting a vanilla theme here, you're right. When I was at the cacao symposium, one of the stops was at a vanilla growing farm. We got to see vanilla orchids growing in pots, with green vanilla beans sprouting off the vines, and they served us lunch with vanilla in almost everything. The vanilla lemonade was FANTASTIC!

Anyway, they suggested trying vanilla in lots of different dishes, and since the price of vanilla is going down (it was at $160/lb wholesale for awhile--and not even for the good stuff!), I figured I'd try using some of my carefully hoarded stock. I had bought a pound of Tahitian vanilla beans back when they were still cheap, and my, they're heavenly.

So now I'm experimenting with vanilla in lots of different things.

I'm also considering making my own chocolate! I had thought you needed lots of really expensive equipment to make your own chocolate, but it turns out that for about $1000 you can get a complete setup for making your own chocolate. See Chocolate Alchemy for details.

Now, $1000 is still a sizable chunk of money, but having looked at their stuff I think the only thing you *really* need is the Santha Wet Grinder, to conch the chocolate, and that's only about $250. I have a few sources for raw cacao beans (not least of which is the 2-3 lbs I brought back from Belize), so now, hmm...

I'm seriously thinking about it. I can't afford it for another month or two at least, and I have no delusions about being able to create the next Valrhona ('tis blasphemy even to suggest!), but I've always wanted to try making my own chocolate. I also think it would be interesting to try flavored chocolates--for example, one can add vanilla to chocolate simply by adding chopped-up vanilla beans during the conching process, and letting the grinders break it down into the chocolate. What if you did the same thing with dried sour cherries? (Drying it down really dry beforehand, so it didn't introduce excess moisture.) Hazelnuts?

At the very least it would be fun to experiment with different roasts, varieties, etc. of chocolate And I could make my own milk chocolate! I have found a source of non-deodorized cocoa butter, so I could make my own version of El Rey's Icoa (white chocolate). It's just too bad I can't think of a way to get lactose-free milk powder. (I can only dream.)

So that's the creative stuff for the week, and I might add, that is the upside of the bipolar disorder--when I'm my regular self, I'm slightly hypomanic and I get a lot of stuff done. It's just the rest of the time that's the pits.

Life is pretty stressful this week as work is preparing for a massive reorg accompanied with mass layoffs--if the rumors are accurate, about 20% of the company is going to go. I'm pretty nervous about whether I'll be one of them--I know, I know, they just rehired me, but things have changed again.

I'm not sure it matters, though, as I've been pretty unhappy with the new structure and am seriously considering bailing on the company. Of course, a lot of other people are in exactly the same boat. I just wish they'd get their reorg-and-layoff done with, so we can all go back to work (or jobhunting).

Tien

Hmm.

It occurs to me (somewhat belatedly) that I might have worried some people with my last post. No, I'm not suicidal at the moment, and things are more or less under control. It's not that I *want* to die; I simply recognize the likelihood that at some point I'll choose death as preferable to living with uncontrollable cycling. I believe very strongly in life, but not at all costs.

As for the taboo on suicide...that's a longer discussion, which I will skip for now. I have thought it through pretty carefully, though.

I'm also still working with various medications...we might find something. I don't expect much, but you never know.

The good news, however, is that I am now un-stuck on the book, and can move forward.

I don't mean to be morbid about all of this, honestly. I think the message to be gotten out of all this is not one of despair, but one of hope--because it is not how long you live that is important, but how you live. I am pretty satisfied with my life to date, because it has been lived intensely, and with few regrets. And the fact is that we all die. I'd like to live longer, but I feel that I've been living like this:

All my life I have wanted to say:
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

Living under the shadow of death makes you love life like nobody's business, and teaches you not to waste time. I'm not saying I wouldn't get rid of the bipolar disorder tomorrow (I would get rid of it ten years ago if I could), but it has taught me a great deal about life, not least of which is to value every moment that you have. By doing so, I think I am living more, in a shorter time, than people who live longer but who take it for granted.

If I could say just one thing to people, it is this: You will die. Don't take life for granted; live every moment that you have.

Tien

Coming out

I went to the Opening Ceremonies for AIDS Lifecycle 4 last week, hoping to find inspiration there. (I've been stuck on the book for quite some time now.) I found them hauntingly poignant. During the ceremony, the Positive Pedalers, a group of riders living with HIV, march solemnly down the hall, escorting a riderless bicycle that symbolizes everyone lost to AIDS. They carry white spirit flags, which will be inscribed with dedications from all the riders during the journey. But they themselves are the human face of AIDS: on this one week, they have deliberately chosen to make themselves visible, to let people know they are out here, and to cut away the stigma of AIDS.

Watching the blank white dedication flags go by, I realized why I hadn't been writing the book: it is impossible to write about someone else's courage and openness when you yourself are hiding.

So I have been thinking about it most of the week since, and have decided it's time for me to come out. I'm bipolar.

I have been bipolar since my early teens, although I didn't have a name for it until a year ago. All I knew was that I kept having short, painful depressions--emotional migraines, accompanied by horrible visual images of being tortured--knife thrust between the bones of my forearms, arms chopped off, skinned alive. Some days I couldn't deal with people at all. Some days I couldn't eat. I learned not to even think about some things because it might trigger episodes; I did stress management classes, and developed ways of identifying when a cycle was likely to start. I shaped my life around staying stable, adjusting my activities around these cycles--and still every ten years or so things would get out of hand, throwing me into a descending spiral of agonizing emotional pain.

Twice in my life I've decided, after months of torture, that life was simply not worth living. I have twice been saved by minor miracles, and the kindness of compassionate strangers. I don't expect this to keep happening, and I'm not sure I would want it to. I feel such pain in the bottom of severe down-cycles that death would honestly be a mercy. And I will be living with it for the rest of my life. Bipolar disorder is incurable, and mine has been (thus far) untreatable.

I was thinking about all this while I watched the Poz Peds passing...they too have faced huge challenges with HIV, and yet they are still here. One of the Positive Pedalers committed suicide last year--the pain in his feet was so bad, and so untreatable, that he decided it was time to go. And yet he conquered. He spoke out about AIDS, he raised money, he made himself the public face of the disease so that others might live better--and he had lived. His life meant something.

I have said very little about being bipolar, even after being diagnosed a year and a half ago, because bipolar disorder is not something you talk about. My family still does not know how to discuss it; they want to be supportive, but it is awkward. How do you talk to a loved one about their being crazy?

The truth is that mental illness is not about being crazy, at least not for me. Stereotypes: irrational, delusional, potentially violent, excuse-makers, child-like--incapable of making good decisions. I'm none of that. I have periods of extreme emotional pain, but I'm always intellectually aware of what is happening, and am no more irrational than, say, someone who is angry (or in love, politically delusional, etc.). But it is very difficult to explain this to people, because they are so uncomfortable with the idea that they avoid the topic entirely. It's like my experience in working with the Support Network for Battered Women: we'd go to health fairs, people would be laughing and walking among the booths, and as soon as they saw our booth they'd go quiet, look to the other side, and stride right on by without looking at us. People don't want to think about it; it frightens them.

I have been told by psychiatrists to pay cash and lie. "You don't want this in your medical record--you don't know who might have access to it." "You'll never be able to buy insurance again, if they catch the slightest whiff of it."

I have never even thought about bringing it up at work, even though bipolar disorder is a federally protected disability. Can you imagine telling your boss you have a mental illness? I can't think of any quicker way to end a career.

I have thought very long and very hard about this, because you cannot put the genie back into the bottle. But in the end, you have to live your life, and you can't do it if you're hiding. The Poz Peds get out there and bike with their little flags because they believe in being open, in showing the human face of AIDS, in getting out there and telling the world that people can live with HIV. I believe that's a healthier way to live than continuing to struggle alone.

For me there is also another aspect: I want my life to mean something. I expect to die by suicide, and I expect to die young. It is important to me that I do something valuable in between. This is why I live so intensely, why I seek out new experiences, and why I try to practice compassion--because it is very, very possible that I may not come this way again. I don't want my life to be short and full of regrets; I want to live before I die. And to me, much of living means being transparent and open about myself, and helping others. I can't do that while hiding.

I hope my decision to step forward helps someone, someday. I don't know if I'll be active in the bipolar community (my volunteer work with AIDS Lifecycle comes first), but I hope that other bipolar people will read this and realize that they are not alone. I hope people who are not bipolar will read this and realize that they do know someone with bipolar disorder, and have known them all along, without realizing it. I hope some good comes of it.

I plan to write more about this later, but for the moment, I'll leave it there. For the record, I have ultra-rapid-cycling Type II NOS bipolar disorder--and I'll stand by it.