Today is officially Rare Disease Day.
Hmm. The experience might be (literally) a pain in the ass, but it is true – while isolated within our own category, we do have each other!
And the only way to gain personal autonomy, political progress, and assure our continuing survival is to recognize the need for solidarity and collective action. Cheers to all of the other freaky kids out there!
Every last one of my misbehaving chromosomes salutes you.
This morning I masterfully started an engine assorted experts agreed was dead – ha!
Then I scampered down the street to begin my tedious cancer tests. Today they just wanted vials of blood, so I rolled up my sleeve. Then I watched with detached bemusement as the phlebotomist, after touching several doors in the reception room and hallway, after handling the paperwork I’ve dragged who knows where, after typing on her computer, after fiddling around with equipment, stuck a needle in my arm.
Neglecting to use gloves or wash her hands.
Did she disinfect the puncture site? Heck no!
Yes, I knew this would happen – and I let it. I suppose I was wondering if last time was just a fluke, but no. This is the hygiene standard. In a medical system that cannot account for the massive damage caused by MSRA.
Perhaps a good scrub might help?
Awhile ago Iain asked how much longer I will live in Cambridge. The answer is simple – if my kid wishes to continue his education, five to seven years.
Iain marveled People serve less time for armed robbery!
Today he took the train from London to hang out with me in what he refers to as your prison city. He has written two whole books defining the parameters of British life… yet he has never attended the Bumps. Clearly this had to be addressed.
Eventually we made it to the river where we stared at the end of a race, athletic and anonymous girls either frowning or literally wreathed with success.
It didn’t seem that important to walk all the way to the head to catch the start of a set.
Instead we retired to the Green Dragon for more talking over a couple of pints, then a festive dinner to round out the day. This meant he was able to witness the …. shall we say enthusiastic attentions I receive at a certain local restaurant. Iain suggested the waiter in question probably has a secret livejournal documenting our encounters. I hope not!
Iain is excessively hilarious; eight hours in his company was a pure delight. Also, to reiterate earlier observations, we winter babies are sneaky bastards prone to making enormous life changes without, you know, talking. We just issue memorandum.
Living in Cambridge does feel like a state of confinement but in the spring the place is a sheer marvel – the daffodils are blooming, the baby animals arrive soon, and there are good friends nearby. It has really been far too long since we had a chance to spend so much time together – it was simply lovely to catch up.
I fly all the time but never ever collect miles. Unless my mother reminds me. Which is only about a twice per year experience (during which she also prompts me to accommodate daylight savings, and have my teeth cleaned).
Imagine my surprise to realize then that I have finally, for the first time in my entire life, earned a free ticket. How amazing!
I’m almost like a real grown-up now!
I’ve spent most of the week attempting to schedule boat maintenance, tearing around looking for critical lost paperwork and royalty checks, and and and…..
Given that I was freaked half out of my mind, what did I do to calm myself? Hmm. How about open all the scary ignored mail from the research hospital and then dutifully write to all five (yes, five) specialty clinics I need to visit.
Including, woe is me, appointments for horrible invasive tests. Pelvic ultrasound, here I come! In some remote part of my brain I know that I am lucky to skip the queue and be treated with such devotion. But mostly I remain annoyed with this tiresome genetic disorder and all the maintenance it requires. Last year was all about decadence. The theme of this year is repairs.
It has been nearly two months since I gave up sparkling water. Success? Why yes, thank you! I’ve accepted the very occasional offer of a glass, but no more than three or four times total. It hasn’t even been hard – now when I drink the stuff my tummy feels strange! Though as predicted, I have not been able to keep up my four liter per day water intake without the bubbles. My feet have thus, of course, been bleeding. Poor treacherous feet. They really ought to get over it. Oh, and the broken toe also. That incident happened a year ago! Pain begone!
Hmm. Know any immigrants? How about… me. Josh, Don, Byron, and three-quarters of the high tech workers and research scientists I know. Peter, Hong-Seok, Jean, Barbara – in fact, most of the professional academics of my acquaintance. The entire East London Massive, a group renowned for cutting edge computer science research.
Children and the elderly charged more? Parents punished if children commit crimes? This is not the vision of a society I want to live in, or a government I would support if I had the right to vote.
Making a distinction between asylum seekers, migrant workers, and professionals is both reprehensible and a logical fallacy – any one of us could make a fortune or end up in a coma. We all pay taxes.
The only real difference between the groups is that those of us with resources can elect to live elsewhere – and obviously, we choose according to the standard of life. The main advantage of the UK is equality of access to the social safety network. I don’t know anyone who moved to this country for the food.
The journey was quite arduous but I am now back in the UK.
What happened in my absence? Break-ups, make-ups, and scandal beyond reason. I missed it all!
What else can I say about Pittsburgh? So much I hardly know how to provide a summary.
There were more excellent meals with Sallyann and Dan, a Valentine gift of time from Lli, hanging out with a wounded Opal, coffee with the irrepressible Kim and her adorable infant (and Lli, and Opal…).
During one brunch I met the Third Termite people for the first time and then realized every single person at the table was friends with Moe and Dwayne, setting off a wave of homesickness along with an unexpected jolt of infatuation for this new city.
It was delightful to be able to talk about the Chicken House and the old neighborhood with people who have walked down the same streets.
We went to Homestead, converted from steel mill to mall, and I muttered Curse the Pinkertons – though none of my charming companions wished to hear further history lectures.
We did as much Mister Rogers’ tourism as possible, including a visit to the Children’s Museum Land of Make-Believe, and drive-by glimpses of his old apartment, the seminary where he studied, and a convenience store where Sallyann once watched him buy cookies.
My kid sat on the same bench at the National Aviary where Mister Rogers’ learned about birds, then he fed the lories:
And I rode both of the funiculars to admire the views of a gorgeous postindustrial city:
I wasn’t joking when I said that curling is my favorite sport. Much to my surprise, some people share this opinion… in fact, local friends even belong to a league. Last night I turned out to cheer Vince, Daphne, and Dan as they swished their way to victory. I love this town!
Last night we arranged to meet friends to go bowling. They were late so we started a game, occasionally joking and laughing with two dads and assorted children in the lane next to us. When Sallyann arrived she exclaimed with surprise and embraced the friendly strangers – they were old friends. Later I whispered an enquiry and she nodded at one of the men and said That is Kim’s ex-brother-in-law.
Moe dated Eric when she was still called Lara, before he married Kim, before she hooked up with Dishwasher Pete. The stranger from the next lane knows a whole cast of characters from my life.
Sallyann and her partner certainly do, spanning inexplicable decades, states, continents. Another woman who joined us is also friends with Amy Joy and Pete, though she lives in upstate New York and they are of course in Amsterdam.
Later I realized that Dan grew up in Erie and asked if he knows MV Moorhead, a journalist friend in Arizona. He looked puzzled for a second then asked He wrote for the paper?
Yes, indeed. What a small world we live in! And the bowling was of course awesome:
If thou must love me, let it be for nought Except for love’s sake only. -Elizabeth Barrett Browning
During one of my previous lives I had a habit of memorizing poetry, the more epic the better. On occasion this surfaces as an impromptu recitation of Die Lorelei (in German, though that is all I retain from high school language classes). I can also sometimes be tempted to do American revolutionary war poems (many, many war poems), or <a href=””>Evangeline</a>, and on rare sad days even Lacplesis.
For the most part though the poems have faded away, along with all the trivia acquired as a history student, accessed only when confronted with a reminder. The other day I was wandering around Pittsburgh when I spotted a memorial plaque marking the exact spot where the local incarnation of the Great Railroad Strike of 1877 happened, with deaths on both sides, and a conflagration that burned the depot. Of course, I cried.
Despite my choice to leave the country, I am in fact hopelessly in love with my homeland, the political process, the history and future of this messy nation. Today is Valentine’s Day, a false, commercial, and insipid day set aside from all the rest without rational reason, and my unravelling issues as a citizen expat are identical to those I’ve encountered in my romantic adventures.
My objection to the day is simple: love should be an operating principle, true love a substantial daily experience. Roses and candy and fancy dinners are all well and good, but distract from the hard work of real love. Just like election year debates act as a smokescreen rather than helping identify the most worthy candidates. Do I care who has good television presence? No. I care about voting records and other tangible proof of political courage. Full stop.
During one of our entertaining phone conversations last year Gordon asserted some point about my tendency to date thugs and I replied indignantly I feel quite cordial toward all of my exes – even the serial rapist!
He laughed and pointed out that would be a good title for another book, but I think it rather unwieldy. The point is valid though. When I love people, I love them for exactly who they are, not some projection of need or desire. Wherever I have encountered love it has been a fundamental truth, something precious and real.
In my life inconvenient facts like geographic distance or murder arraignments have never mattered much because I have found that love is viscous, inescapable. Love does not evaporate when you realize the other person is difficult, contrary, annoying, or has poor laundry habits. Love is not predicated on preference, but rather on something deeper.
Infatuation and romance last a year, maybe two – if you are lucky. The more sustainable variety of regard is quiet, kind, and enduring. Infatuation drives people to distraction. Love gives rides to the emergency room, year after year, without fail.
I mostly hang out with writers, musicians, artists, logicians, and other varieties of professional liars. This makes it very difficult to know what is true, and what is just a story. But love transcends rational thought and outlives passion.
Love is love, something found, not chosen – though we each make our own choices to accept or decline, to nurture or sabotage. True love does not die but remains, either a continuing gift or a grievous loss. People can be stupid, careless, mean.
From my observation most people (myself included) just flail along without a master plan – hurting each other all the time, whether accidentally, through good intent, or by malicious design. I work hard to be attentive but tend to be more analytical than emotional, which can sometimes feel quite cold and cruel.
Over the last year many friends my age have fallen prey to nostalgia and started to look up lost friends, old acquaintances, made plans to attend reunions. I have very little interest in such actions because the people I care most about have generally remained in my life. The only exception is of course abandoned lovers – specifically the very few I did not allow to become part of my extended chosen family. I do not think of them often, but when I do I wonder what they remember, how they account for whatever happened.
If etiquette allowed I would be keen to inquire. This would not be wise; James correctly advises that I really ought not talk to anyone who has threatened to take my life or kidnap my child. Fair enough – though none of these people scare me, I respect the fact that we acted as incendiary devices in each others lives.
Over the winter holiday Ana Erotica asked if my heart has ever been broken and I answered No, without elaborating. .
This was a prevarication of sorts, because the organ in question was in fact literally smashed during the car accident. I have also experienced woeful sadness over the deaths of loved ones. But she was asking about romantic love, and I have in fact never had my heart broken in that cliched way. Why?
I have certainly loved deeply, and been loved in return. I have also lost more than I can calculate. But, critically, I have never chosen who to love, only who to talk to. When I walk away it is an act of preservation. I am a strictly disciplined person, it is true – but I also retain an innocent faith in both electoral politics and true love. Even though I have fled my country of origin. Even though I have engaged in bloody battles. Even though much of my life has been an illustration of loss and grief and pain.
I still love my children, my husband, my mother, my friends, and everyone who has ever sincerely loved me. I still vote, and think, and act out of a principled regard for other people. I maintain a simple conviction that this story has a happy ending.
Today on Mister Rogers the characters in the Land of Make Believe discussed their particular and various definitions of love. There was no consensus, except Lady Elaine’s comment You know the feeling when you find it.
Happy Valentine’s Day.
Last year I developed a fantasy (some of you may recall I have no imagination, so please translate this as plan) to acquire an apartment building and install all of my favorite people. So the dear would be near…. but in charge of their own chores.
Of course no such scheme could come to fruition in my favorite cities; they’re all way too expensive. But various people are trying to convince me to move to Pittsburgh and a large part of the pitch has been house porn.
Advance intelligence was correct – you can in fact buy whole city blocks for chump change! I’ve met punks who put grand houses on throwaway credit cards!
The other night Gordon texted to ask if I’ve bought one yet and I excitedly replied No, but I almost bought two adjoining apartment buildings! Wanna be my tenant?
He wisely did not reply.
One small hitch is the fact that Josh, Marcus, and MV are the only elsewhere friends who voluntarily wander through Pennsylvania – not exactly a high percentage in the friend category (though they are of course high quality). And then there is the pesky lack of an international hub airport. Still, a girl can dream!
The first time we met eleven or so years ago Lli was wearing a leopard print skirt, some kind of military surplus jacket, and lots of wild half-dreaded hair. My sartorial choices would have been much less ambitious – I was likely drifting around in a tattered old Smithfield t-shirt, and my hair was almost certainly bobbed and dyed black. Spectacles? I think I had on the pair I wore at seventeen… all of this, of course, a by-product of poverty so severe I could not even afford to go to the thrift store.
She was holding a beautiful blonde baby, and I was clutching one also. Those two infants could not walk or talk when they first met, but they remained friends as they grew and grew, consistently the tallest in their social scene. We all moved away from Portland on the same day five and a half years ago – Lli and her daughter to Pittsburgh, my small family to Seattle, then Europe.
In the years since we have met up again back in the old neighborhood, in NYC, and even in London. We’ve all changed substantially, growing independently into various careers, educations, styles, lives.
The incredibly fascinating thing is the fact that the children pick up the friendship without even a seconds pause. They still share the same attitude, interests, sense of humor, even matching winter coats… and of course, excessive height.
The girl is taller than her mother, and me, and my boy is only half an inch behind! It is truly a gift to have this continuity between a life I loved and abandoned, and a new life that continues to amaze. Kids at the Warhol Museum:
I’m sitting around in my knickers waiting to go out on an epic quest to see the city Mister Rogers called home.
During the layover in Chicago I texted various people to let them know I was back in the states and headed to Pennsylvania. Jody replied Pittsburgh? Awesome! I love Pittsburgh!
I was mildly baffled and asked Have you been there?
He answered Of course! I used to work for the AFL-CIO!
Oh yeah – I always forget. Since he is a man of leisure now it is hard to imagine but he was once a union operative… and very good at disrupting shareholder meetings, I am sure!
I asked for tips on things to do in the city and he replied Walk the picket line?
I pointed out that it is too cold and he answered Beat up scabs to stay warm!
Hmm. I think that I will go ride the funicular instead!
When informed of my geographic location Mark Mitchell imperiously demanded my presence in Seattle. Oh, if only I could go! It often feels like my heart has been cut up in little pieces and deposited in bloody parcels all over the world.
I would not trade my peripatetic and erratic travels for a false sense of stability – or anything else. These years on the road have been the most difficult, confusing, strange, enchanting, and amazing – out of a whole lifetime of adventure. After all, would I have met these people if I had just remained quietly at home?