June 17th, 2013 § 2 Comments
Here it is, less than a week since I turned 49 and I'm already plotting my 50th birthday and attendant parties. And I've figured out a way to pay for whatever I want to do (leaning towards a pizza party, wherein I close my favorite local pizza joint for a private party, or a fancy dinner somewhere nice for a smaller group; a trip to New Zealand or Ireland isn't out of the running).
For several years I have saved $25 a month in an online savings account. I don't check on it very often, and usually have to call the bank to get new log-in information because I forget my username and password in the lengthy intervals between peeks. By not keeping track of how to get into the account or how much it is, I keep it out of mind. Last I checked (a year ago? two years?), I had about $1400 in it. I want to double those funds and figured out that if, every week, I put away a progressively larger amount of money, I could end up with about $3000 to spend on my half century celebrations: this week I save $1, next week $2 and so on until that last week I save $52.
Even $3000 won't get me as much as I want. My dream would be to have a huge weekend party with all the people I love most, preferably at Sleeping Lady where the sheets are soft, the nights dark and quiet, and the food as spectacular as the scenery. Also, other people clean up. I won't be able to cover that with $3,000, though.
Yeah, I know. How much I have and how big a party I throw doesn't matter as much as having the people you love around. Blah blah blah. I want a party (said in the same tone of voice some girls say, "I want a pony!"), and I'm determined to find a way to pay for as big a bash as I can.
What about you? How do you celebrate important birthdays? Do you think I'm silly for making so much out of my 50th circuit around the sun? Would you feel differently if I invited you to my party?
June 16th, 2013 § Leave a Comment
I fulfilled a dream of many years yesterday and saw Garrison Keillor and his cohorts perform A Prairie Home Companion for NPR. I've loved Keillor as a writer since I was in college in the 1980s. I didn't get into the show until later. Some of my friends find it too slow and languorous. Maybe that's what I like about it.
I bought five tickets because I had friends who said they'd go. One of my rabbis and her rabbi husband (aside: if the wife of a rabbi is a rebbitzen, what's the husband of a rabbi called? Seriously; I want to know) are fans. The other couple? Their plans changed, and I ended up with a couple spares. So I asked a friend of Mr. Right Now, Emily. She was excited because she and her grandpa had bonded over the show. So she loaded up grandpa and his wheelchair and we were off to Chateau Ste. Michelle winery in Redmond on a glorious sunny June day to see a man we all admired.
When I bought the seats, all I cared about was that they were reserved and actual chairs, not festival seating on the lawn. I'm not good on the ground. And Grandpa John might have found it difficult, too. Lucky us: We had chairs. Three rows back. If I yelled my love, Keillor would have heard me. And when Emily opened a can of soda? I bet it was heard nationwide on the radio broadcast.
The musical guests delighted: Seattle-based pianist Fred Kronacher, and Canadian duo Pharis and Jason Romero (from Horsefly, BC, where denizens are called Horseflinians, when we all know they should be called Horseflies) -- I'll probably buy the latter's latest disc. It was fascinating watching the Prairie Home players make the sound effects that punctuate the Guy Noir stories and Ketchup Board commercials. It changed the experience for me. I'm sure I missed out on plot points during the "Fiction is Action!" skit while watching Fred Newman (with Tim Russell and Sue Scott) create the sound of a sperm whale in heat.
Nicest of all was spending time talking to Grandpa John. I'm not usually good with new people -- the the point that I avoid situations where I know I'll have to meet new people. But he was funny, engaging, and had great stories to tell about a life lived in three countries, on two continents. I'll make it a point to hang out with him again.
As for Garrison and his crew? I was happy to learn that he is rethinking his decision to retire after this season. I'll see him again next year if he comes. Maybe Grandpa John will be my date.
Interested in Garrison Keillor the writer? You can't go wrong starting with Lake Woebegone Days, but Leaving Home and We Are Still Married are also great.
Any of his books with the word "Woebegone" in it are good bets. Any of his books are good bets. Pick anything on this page.
June 15th, 2013 § 1 Comment
In my 49 years, I have gained some wisdom. Some, like don't touch fire, came easily, if painfully. Others, such as daring the universe to laugh at you by speaking aloud the Always and Nevers of your belief system, I have learned only slowly and with much pain.
For example, about 12 years ago, I was interviewing the chairman and CEO of the Arthritis Foundation about the new treatments coming on line for Rheumatoid Arthritis, and I had the temerity to say out loud that if you have to get an autoimmune disease, well, that was the one to get. I was speaking from the perspective of knowing my mom's autoimmune history includes two rare diseases -- autoimmune hepatitis and primary biliary cirrhosis -- which have little research funding and few treatment options. Less than a year later, I was diagnosed with RA. Haha, says the universe.
There are other occasions, times I've said, "I will never do" this or "I could handle that better than her" and fate has contrived to test my mettle. It occurs to me that when I said I would consider risking my life for a bone marrow transplant, that I may have inadvertently dared the world to find a reason for me to need one. I've decided I need to change some of the things I say out loud and hope the gods in charge react in the same perverse way as they have in the past.
- I would never date George Clooney.
- If I won the lotto or came into a huge hunk of money, it wouldn't make me crazy.
- I couldn't handle a well-behaved dog.
- I'm glad I have a son who feels comfortable enough to keep his room in its "natural" messy state; if it was clean, I would wonder what was wrong with him.
- I will never gloat on social media if books I write make it to the best sellers lists and are made into hugely successful films.
- I have no idea what I'd write about if I suddenly was cured of RA.
The ball is in your court universe. I await your responses with interest.
What would you tell the universe in hopes that the opposite happened? What has happened when you have dared fate?
June 14th, 2013 § 1 Comment
This is Mia and her brand spankin' new fiance John. It's her birthday today. One of those that ends in a zero. If you see her around, tell her happy birthday. If you see John, tell him he caught a good one. If you see them together, wish them joy. Heck, buy them a drink. they deserve it1
June 13th, 2013 § Leave a Comment
I know some of you are probably hurting for ideas of what to get your dad for Father's Day on Sunday. I'm here to help. In case you didn't know, I like to read. So I've culled through the books I've read in the last few months for five that might be good options to get for reading dads.
Hank Greenberg: Hero of Heroes by John Rosengren -- Full disclosure: John is one of my virtual writer friends. But the book is worthy regardless. Hank Greenberg has long been known in baseball circles for his skills with a bat -- his nicknames included Hankus Spankus, Hammerin' Hank, and (as one of the few elite Jewish athletes) the Hebrew Hammer. This book fleshes him out. He's more than the guy who wouldn't play on Yom Kippur. If you're dad is a baseball fan of a certain age, pick up this book.
Canada by Richard Ford -- What happens after the crime? What becomes of children when their parents go to jail? Beautifully written, the tale is told through the eyes of a son, who with his sister are somehow forgotten in the aftermath of an ill-conceived robbery and the subsequent arrest of his parents. Ford tells of the boy's unexpected journey to Canada and his experience of a stark landscape and difficult life, his yearning for family and education, and how he makes sense of the idiocy of those who should have taken care of him. The language is sublime. There's plot, too, which I know some readers crave.
It's not a new book, but my son just read The Yiddish Policeman's Union by Michael Chabon and I was reminded of what a delightful novel it is. Even if you don't know a lot about Jewish life or Yiddish language, it's funny, engaging, and full of the twists and turns you expect from a good mystery. If you have knowledge of those things, you'll probably laugh harder. The premise: what if Israel wasn't the home of the Jews, but Alaska was? This is something actually proposed by Roosevelt at the end of World War II. It was the book that got me started on alternative histories, which led to 11/22/63 by Stephen King. I don't read King, usually, but this imagining of what might happen if you found a way to stop one of the most unforgettable events of the last century caught me from the start. King is a wonderful writer, even if you don't like his usual horror-type genre fiction. I couldn't read fast enough. Haruki Murakami's 1Q84 isn't as fast paced and deals less with alternative history than with a sudden shift in reality. Are there infinite time lines that we live? What if you slipped between them and the world you entered was just slightly different, events skewed at some time in the past by some event that didn't happen in your time line? The story revolves around an unlikely assassin, an escapee from a cult, and a frustrated writer. Not for everyone, but for the literary reader a good choice.
If your dad likes funny, consider David Sedaris' last two books. Squirrel Seeks Chipmunk and the newly released Let's Explore Diabetes With Owls are filled with the same charming wit and simple joy that marks most Sedaris essays. If you guffawed through the Santaland Diaries, giggled through Naked, and woke your spouse with Me Talk Pretty One Day, pick up one or both of these for Dad. If he hasn't read any and he was a totally awesome father, buy them all. He totally deserves it.
June 12th, 2013 § Leave a Comment
This picture of me and my mom and her hairpiece? I was as close to birth when that was taken as I am now to being 50. And I'm totally cool with getting old because the alternative to aging isn't really something I'm anxious to experience. So happy birthday to me. Go out and have a cupcake.
June 11th, 2013 § 6 Comments
Every year during the Blogathon get to explore the word stylings of writers I've never read. In some lights, this could be a burden: I have limited time and so many good words to read. But in another light -- the one I use to illuminate my life -- there can't be enough good writing in the world, and if I die not having read all of it, well, at least I will have given it a good college try.
So here are five blogs about writing I discovered through this year's blogathon. These are habits in the making.
I read Jennifer Willis blog for the first time a few days ago. She commented on my blog post about RA and what I'm willing to risk to get rid of it. I clicked on her name and came to this post about her writing goals and how they intersect with her health. That's all it took to hook me. I've had fun browsing around her site. She's a fine writer. She should be really famous.
Janine Robinson's Essay Hell hits close to home. Darling Son is 16 in a couple weeks. College applications are fast approaching, and while my son is a good writer -- how gratifying to me! -- he'll need help with his college application essays and he won't take it from me. From Janine? Maybe not. But from a website with a swear word in its title? You bet.
Jean Gogolin's Writer's Clinic blog is engaging. There's always a question asked, a thought to ponder. It's not just opining about writing, but asking for the reader to consider some aspect of the craft -- humor, the merits of outlining for a big project, blood and gore.
For some of us, writing daily requires a prompt. And blogathons, writing challenges like NaNoWriMo, and contests are one way of doing that. Rosanna Rogacion's Writing on the Pages of Life got me interested in her blog through a post that had a list of other writing events. It just takes a good post to get me interested enough in your site to start paging through. Good job, Rosanna! You caught me!
Marial Shea's Marial Writes is a new favorite. Whether she's pointing you to a great site like 750 Words or admitting her own fears about blogging (hey Marial! Look at the post I highlighted on Writing the Pages of Life -- more prompts to making writing a habit.), she writes entertainingly. And you know me, I like a good read.
I still regularly read Michelle Rafter's Wordcount and Jennie Phipps' Freelance Success blog, and there are others I read occasionally when someone points me to a particularly interesting post. But I'm open to reading other writing blogs regularly.
Do you have a suggestion? Leave a comment: I'd rather have too much too read than too little.
June 10th, 2013 § 2 Comments
Ruby is a giant dog. She seems to be smart -- she learns quickly, and loves to work for food. Her trainer Ali at Kinship Dog Training says she's not stupid. But the things this girl is afraid of, even after nearly three years with us, never ceases to amaze me. Consider her top 10 list of things to stay away from (and by stay away I mean drag whoever is on the other end of the leash as far as she can away from the thing, as fast as she can, regardless of whether that means into traffic):
1. Fountains, but only when running. They're fine if they're dry.
2. Our screen door. She'll go out through it, but not in. It's partly come loose from the frame, so she can go out without us opening it. She learned that from Mr. Right Now's dog Claudia. She can't figure out how Claudia gets back in without coming into contact with the scary screen door. So she sits out there and whines.
3. Garbage cans, particularly if they are being rolled up and/or down the driveway by neighbors. She goes ballistic. If she's being walked and one happens to be in her line of sight, she'll drag the leash holder by quickly. Similarly, moving garbage truck arms are frightening, but not the trucks themselves.
4. Those air-powered tubular waving men that businesses use to attract attention. She's rather be hit by a bus than go near one.
5. Sprinklers of any kind. And hoses. Hoses lying on the ground and not hung up are also scary.
6. Big bodies of water. On hot days I take her to the dog park at Luther Burbank Park on Lake Washington. She will play with her doggy friends and get close to the water. She may even get up to her ankles or even knees. But one small little wavelet and she's out of there, ducking behind my legs like a shy toddler.
7. Coughs and sneezes delivered by any person in a bed on which she is sleeping. If she's in a place that's not great for my comfort, a fake sneeze will send her running. It's a convenient fear which I'm happy to cultivate.
8. Rakes and other garden implements when leaning up against a fence or other vertical object. I think she thinks they're very skinny menacing people.
9. Strollers, wagons, tricycles and other vehicles that hold small children. This is an approach avoidance thing. She loves the idea of children. She's not so sure about the things on or in which they ride. Usually, the potential to have a lick at the food residue on a small child wins out.
10. My personal favorite is one that I'm not sure still holds, but I'll add it anyway, because it's just as likely that she'd be scared as not: bags hanging on fences near bus stops. The school puts these up for the teens in hopes that they'll toss stuff in them rather than around them. Ruby has been known to run all the way home upon seeing one of these.
My dog weighs nearly 75 pounds. She's got a bark that will probably lead to early hearing loss for everyone in the household. She's scary. But I guess more than that she's scared. Mostly it's funny. But the not getting in the lake on a hot day? I'm determined to have that fear conquered this summer. We've tossed food in the shallows, and she'll do a lot for food. But not water. Any ideas?
June 9th, 2013 § 6 Comments
I lost Saturday. I went to bed on Friday night, and when I couldn't sleep, I read into the wee hours. I fell asleep at about 5:30 a.m. My intention was to get up around noon. When I first awoke, it was late afternoon, and I wasn't able to get up. Darling Son always asks, "what bad thing would happen" if I did get up when I say I can't. It's not that simple, I explain. I just couldn't get up. I suppose if there was a fire and I had to leave to save my life I could. But if I had an appointment, a meeting, a plan for the day, I would have cancelled. In the past, I have done just that. Over and over again. So I slept until 9:30 p.m. and finally felt human. But I didn't get up then because that would start a cycle of me being unable to sleep at night, only for a different reason. So I stayed in bed and dozed on and off until Sunday morning.
This happens to me about once a week now. It used to happen just around the time I get my infusion of Actemra, a biologic drug used to treat Rheumatoid Arthritis. I'd sleep for 30-48 hours. That it's happening more often means it's probably time to change meds again. I take 32 prescription pills per day, plus about 14 supplements -- turmeric, fish oil, green coffee extract and others that have some science indicating they might have anti-inflammatory properties. The co-payments for my prescription medications, not counting the monthly infusion, run around $1,400 per year with my current insurance. I am on a program for my infusion that for the time being covers the $400 per month co-pay for that treatment. I'm not complaining about the cost here. But keep in mind the financial cost.
In the 11 years since I was diagnosed, I have never been in remission. I have bounced from one biologic drug to another. I may start to feel better, but then some reaction to one of my drugs will kick in, or something will be recalled. Then I have to claw my way back to par. Or just below whatever par was before my meds changed. I'm tired of being ill, of losing days. People who hear me say I have to take a nap or have a rest often comment on how lucky I am and how much they wish they could have a rest in the middle of every day.
When I was in college, I lived for a time across the way from a quadriplegic man and his wife/caregiver. One hot day -- I went to UC Davis, where temperatures spring quarter could reach triple digits -- I saw her riding the back of his chair as he tooled across campus. "I'd love to have a ride on a day like this," I said, mostly to her. He looked at me and said, "It's the one benefit of being stuck in a chair." Color me red. And suddenly aware of how little we know of other people's plight, pain, and hardships. (As an aside, I have a handicap parking permit. It's my one benefit of being ill.)
The thought returned to me a decade ago when I walked by a house I'd walked by a hundred times before, usually with some disdain. It has worn paint, grass grown knee high and full of weeds. Often there is a lawn mower left mid-lawn. There are old cars that don't run, dusty toys, a falling fence. It's on a nice street, so I was usually very judgy about it. Then I got sick and my own home and yard suffered from neglect. What did I know about the lives led by the people who lived in that house? For all I knew someone who was ill lived there, someone with severe depression, someone wounded in a war, someone cared for by his or her children, rather than caring for those children as a parent should.
So, yes, I nap. But don't be envious.
I wish there was a cure on the horizon. But there isn't. And jaded as I am, I think there probably isn't a lot of interest in finding one, at least not by the drug companies. If my biologic treatments alone run around $30,000 per year or more, why would they want to find something that would turn off that spigot of revenue? In 11 years, my various insurers have paid out well over a half a million dollars in drugs and physician fees. It's lucrative to Big Pharma. I'm lucrative to Big Pharma.
I've been telling people I'd like to crowd source the funding for a bone marrow transplant. They think I'm joking. I told my doc I was serious, but she said no, it was too dangerous. I sent an email a few weeks back to a doctor who does a lot of research into RA and other inflammatory auto-immune diseases. Is anyone working on a cure? And is anyone looking at completely resetting the immune setting with bone marrow or stem cell transplants?
This was her response -- some of it is heavy on the science side, but I've left it intact:
"You are correct that the cause of RA is still not understood, although some progress has been made based on the understanding that induction of inflammation by environmental factors (such as smoking) can trigger production of enzymes (PADI) that citrullinate proteins and in an individual with the susceptible MHC class II allele those citrullinated peptides can activate a self-targeted immune response. There is research focused on the synovial fibroblast and its special destructive properties, but the whole story of RA pathogenesis requires further study. A number of academic centers do study the underlying mechanisms of disease. I can't say to what extent biotech and pharmaceutical companies investigate the cause of RA, but companies such as Genentech do collaborate with academic investigators to study synovial tissue from patients to understand the basis of responsiveness to the various drugs. Current NIH grant support is terrible, and research in most areas of biomedical science is suffering. So you are certainly correct that more research should be done.
"Regarding bone marrow or stem cell transplant - it is being done in some centers but more for diseases that have greater mortality - such as scleroderma or lupus...(B)ut I don't know anyone who would recommend this for a patient with RA."
She didn't really answer my questions, did she? And the last part? Well it ticked me off. Greater mortality doesn't mean squat if life comes to a halt, if there is no quality to that life, right? No one would recommend this to an RA patient but an RA patient. It bugs the shit out of me that some doc who doesn't lose days to this disease, who doesn't know what it's like to not be able to sleep but is exhausted says this to me. She doesn't know what it's like to not be able to work out, to not be able to work enough to take care of her family. She can't comprehend what it's like to never be able to keep up with her life in any meaningful way. In the 1,500 cases where someone with an autoimmune disease has had a transplant (for whatever reason), there have been deaths in 17% of cases, most of those in the earlier part of the 15 year period in which they took place. About a third of the patients experienced complete remission. That doesn't sound like great odds to most people, but to me it sounds almost worth it.
Maybe I'll have to find a doc in Germany or Korea or China or somewhere else where they are looking for a cure, where corporate drug giants decide how much they can get for the privilege of patients feeling a little better. Sometimes. For a while. It would be worth it to me.
June 8th, 2013 § Leave a Comment
I have a problem with books in that I read a lot of them and will forgo sleep to keep turning the pages of a good one. And I invariably pick good books. For the last week or so, I've been plowing through the trilogy on which the PBS series Call the Midwife is based. Written by Jennifer Worth some 50 years after she stopped working with a group of nuns as a nurse among the poor in the slums of the East End of London, the books are finely written. If she didn't have a ghost writer or endure heavy editing, Worth was not only a fine nurse (and a musician later in life), but had a great gift for story telling.
The first book, Call the Midwife: A True Story of the East End in the 1950s, is almost a twin of the television series. It was gratifying that there wasn't a lot of difference between book and film (is there anything worse than reading a book and finding the film version wanting? Except maybe seeing the film version and finding the books completely different?). I know that Hollywood-types take liberties with the print version in the name of visuals or what some guy holding the wallet thinks will sell better. That doesn't seem to have happened. A couple characters from the books didn't make it into the first or second series, and there are few stories from the series that aren't in the books at all.
The tone of the writing is nostalgic, and I kept thinking of the scalloped edges of black and white pictures from the time. It made me wish there was some illustration in the books. Worth used pseudonyms for characters and made up a name for the convent out of which she worked. Obviously privacy was important to her -- of her patients and her peers. But still: I'm sure there must have been pictures available of Worth herself in her Poplar surroundings, or at the very least that showed us the post-World War II landscape in which she worked.
Volume 2, Shadows of the Workhouse tells the stories of patients who had been impacted by life in the workhouse at the turn of the 20th century. The stories are invariably sad and angry-making. You want to rant and rage against a system that to our modern sensibilities is nothing but cruel. But Worth reminds us in the body of the book as well as in the appendix which explains the workhouse system, that this was something awful that developed out of noble ideas of helping people who had no other assistance. It was, she says, the beginning of the modern welfare state. One of Worth's strengths as a writer is that she always brings us back to the point of view of the characters and the time in which they lived. There was no such thing as women's lib or birth control or abortion. Domestic violence was rife and expected by both women and children. That a group of women carved out a career for themselves and were living lives independent of fathers or husbands is something utterly amazing to the Jenny of the stories, and the author lets that amazement shine through.
The final book in the trilogy is Farewell to the East End which tells some of the best stories. How Chummy fell in love and married, as well as the amazing story of a man who married identical twins (and strange ones at that), are included here. There is information that goes beyond what I watched on TV, which is gratifying. But as I finished the books I was sad that one of my favorite story lines, the tale of Sister Bernadette falling in love with the doctor, wasn't in the books. I'm guessing that means it wasn't true and was added for dramatic value. Other missing stories in the books that showed up in the series covered issues like date rape, abortion, and birth control. The series was made after the author died in 2011, and I'm guessing she would have included such material in her books if it had, indeed, happened.
One thing irked me throughout the books: how could she know what some characters said and did in her absence? There has been a lot of discussion in the last few years about how true a memoir needs to be -- Greg Mortenson's Three Cups of Tea, A Million Little Pieces by James Frey, and even David Sedaris' essays have come under fire for doing everything from mucking with time and creating composite characters, to outright lying. I think there has to be an assumption of truth if you call something memoir. I have recommended the Worth books to others -- I sent my mom copies because she loved the show and will enjoy the books, too. And that wouldn't change if they were published as fiction based on a true story. Given the popularity of the trilogy -- in the top 100 on Amazon.com -- and the wild audience response to the series (a third set of eight shows and a Christmas special was just ordered, and individual episodes outperformed Downton Abbey), I'm guessing others wouldn't mind, either, if it was noted that not everything written in the books was precisely true.
As I write my own story I struggle with issues of memory and how what I recall may differ from others' experience. But I promise you this: If I publish a book called memoir, it will be truth -- my truth and how I remember what happened. It won't be be fictionalized. If I have to do that, well, I'll publish it as fiction. And that's what Jennifer Worth should have done, too.