Friday, December 17, 2010

How Did You Come to Vashon Island?


I had dreams about the island and Mt. Rainier all that summer.

I love to hear people tell how they stumbled on this island, and ended up living here. Here, I'll get the conversational ball rolling:
When I was going to school at Cal Poly in San Luis Obispo, California, back in the 60s, I was in a country-folk-rock band. The band consisted of Van, my sweetheart, on lead guitar, me as chick singer, Randy on rhythm guitar and dobro, Bruce as bass player, and a long line of drummers who came and went. That was when I learned that drummers as a rule are goofy, to put it mildly. I don't mean to impugn the whole class of percussionists, I'm just saying that rock drummers are predictably unpredictable.
Anyway – Randy met a married couple named Marc and Chrissie who were also old-timey musicians. Marc played wicked fiddle, Chrissie played banjo and guitar and autoharp and they both sang. We became friends and played music together, until Van and I moved to Los Angeles in 1969 to become rock stars.
Seriously. That was the plan.
After that Randy played gigs in San Luis Obispo with Marc and Chrissie. In 1971, just before I moved out of LA, I got a letter from Bruce the bass player. He said, "Bummer in the summer. Marc and Chrissie have moved to Seattle." Marc had apparently graduated from Cal Poly – who saw that coming? - and acquired a job up in Seattle.
Sometime around Christmas 1971 I received a letter from Marc. He and Chrissie had moved to an island, the letter said, and had met a couple of musicians who lived there. They were planning to build a concrete sailboat and sail around the world playing music, but they needed a singer. Marc invited me to visit. No one had ever literally invited me to sail off into the sunset before, so I quit my job, packed my '58 Chevy with a few necessary belongings, and drove up for a visit.
I arrived at the Fauntleroy ferry dock on April 16, 1972. Once on Vashon I followed the traffic up the highway, and it was right around the nursing home and the Episcopal Church that I knew: this is home.
I drove up to the main intersection, and using the pay phone there called my friends to let them know I had arrived. About 12 minutes later, up drove a VW beetle with a police car paint job - white doors, blue fenders, and eagle decals on the doors - with Chrissie waving at me over the shoulder of the young hippie driving. She jumped out of the car and introduced me to Rick Tuel. Yes, he was the very first person I met on the island, but we didn't get married until seven years later. Slow learners.
Now, there is quite a convoluted tale of that trip, but we'll skip that for now. I returned to California after a couple of weeks, but the island had taken hold in me. I had dreams about the island and Mt. Rainier all that summer.
In November of that year, I came back and decided I would move here. On January 4, 1973, I started driving north and arrived here on January 5 after driving all night through a snow storm. I had about $37 to my name. I moved into a house full of hippies, and stayed.
Interesting (to me) fact: my first son was born exactly nine years later on January 5, 1982, during a snow storm. Second interesting (to me) fact: my first boy friend on Vashon Island moved off the island after we broke up and went on to be Microsoft employee number 9.
A question I've never been able to answer is how Marc and Chrissie got here, because they soon got S-A-V-E-D and moved off the island to join a large evangelical church which later dissolved in lawsuits and acrimony. They got me here, though, and I never left.
So what's your island story?

Thursday, December 9, 2010

Eventually This Gets to John Browne

There was a column on my computer, almost ready to go. All I had to do was the final tweaking. I got up this morning, came in to finish the column, turned on the computer, and was greeted by a big red window telling me that my computer files were infected with a Trojan horse.
And that, my friends, was that. My computer was frozen solid. It would not work in my house, it would not work for the mouse. I did not like it.
I shut it down manually and unplugged all the peripherals. It's out in my car now, waiting to be transported to the computer hospital.
One of my first thoughts was, I haven't had this much trouble since I used Macs. I started out on Apple computers because I'd heard they were superior, more user-friendly, didn't get viruses, and didn't crash as often as PCs. Anti-virus sales people always tried to convince me to buy anti-virus programs for my Macs. I did that once. Put an anti-virus program on my Mac. The computer immediately crashed and had to be taken to the Apple computer hospital.
While Macs may be more immune to virus infections, what I found was that they “corrupted.” One little piece of data would mutate, and pretty soon the whole hard drive had a cascade of mutations and the computer would crash and have to be taken...well, you get the picture.
I know that Mac users are devoted to their computers and I'm not trying to argue with anyone. I'm only saying that my Macs crashed a lot more than my PCs. In eight years of using a PC, this is the first time one has contracted a virus. Apparently anti-virus software actually functions on PCs. Except this time. Oh well. Off to the computer hospital.
What am I writing this on? My Netbook, which runs on Linux, which is looking pretty good to me right now. Except all the games seem to involve penguins, for some reason.
Now, an explanatory note for those of you who do not live on the island and don't know what happened to John Browne: on November 22, there was a snow and wind storm that hit the island. A tree fell down across 111th Ave SW, down the hill from the home of John and Vicki Browne. John decided to go down the hill and clear the tree off of the road. He took his chainsaw and went to work. While he was working a driver came along, lost control, and hit the tree. The tree pushed the chainsaw handle into John's mid-section, damaging his small intestine, and bruising his liver, lungs and heart (so I heard - not too sure about injuries to those organs) and shattering his left elbow. He was taken to Tacoma General Hospital because the bridges from West Seattle to Seattle were closed that night with ice, and Coast Guard helicopters could not fly in the storm.
He had surgery to remove some of his small intestine and stitch it back together, and another surgery to put his elbow back together. He was in the ICU about a week then moved to another room, and I last heard that he was going to a recovery facility, or perhaps to one of his children's homes, or even home with Vicki. I don't know the whole straight story but the fact is that he's improving. Now he and Vicki need a little help.
There's a benefit for John Browne at the Red Bicycle on Saturday, December 18. Drop by and support John & Vicki. They have given the island the benefit of their good selves for many years; let's benefit them. Whether you come or not, you can send money to the fund for John Browne at US Bank, P O Box 428, Vashon WA 98070.
Factoid: the first time I met John Browne was when I picked him and another guy up hitch hiking at the intersection of Haight Street and Fillmore in 1966.
Final words for 2010: Merry Christmas, or Solstice, or Kwanzaa (Hannukah's already gone by), and stay warm with your loved ones, Islanders.

Saturday, November 27, 2010

How I Write a Blog


Photo: Blogger at work

A young friend who is a graduate student has asked me about the process of writing and posting a blog.
First: I need an idea. Sometimes ideas are handed to me, like “how I write a blog.” Thank you, Amelia.
Sometimes I am interested in something, and I do some research and write about that subject. Case in point: the recent series of columns on the pioneers who developed treatments for renal failure.
Those columns also tapped my personal experience. Personal experience is a rich source of material, and I've now lived long enough and done enough that I can tell stories until everyone in the room is asleep with their mouths open and drool running out.
Occasionally something will happen that catches my attention so vividly I write about it. Latest example: a few months ago President Obama was in town, and some poor guy in a private plane didn't know that the air space over Seattle was restricted during the President's visit. Two military jets scrambled from Portland and flew up here so fast that they caused a couple of sonic booms which (a) shook our whole house, and (b) scared the bewhatsis out of a lot of people in the Puget Sound, thereby causing the 911 system in Tacoma and other areas to crash from the call overload.
So, I get the idea and I start writing. My most used reference is my dictionary. That tells me if I'm using the exact word that conveys my meaning, and how it is spelled. Spell check can be helpful, but it will make suggestions like “collisions” when I really mean Colossians, a book of the Bible. Funny, but not helpful.
Online is my second go-to after the dictionary. I go to several different sites about any given subject because I've found they will say slightly different things and I'm looking for a consensus of information that will be as factual as I can make it.
The writing process is a combination of writing, tweaking what I've written, staring out the window without seeing anything, and looking things up.
I write a first draft that includes everything. Anne Lamott says, “Write a shitty first draft.” (Asterisks were supplied here in the printed version of this column in The Loop, in consideration of Loop readers' tender sensibilities) Anyway, Anne Lamott is right. I write a first draft, then I let that draft sit for an unspecified length of time, anywhere from long enough to eat breakfast to a couple of days. When I come back to it, the serious tweaking and cutting begin.
William F. Buckley said, “Be grateful for every word you cut.” I doubt if Bill and I agreed on much, but that is my number one rule as a writer.
So, I come back to the first draft with refreshed eyes, and cut, re-write, edit and proofread until I'm satisfied. That can take hours, or days.
Sometimes I'll write a whole piece, think about it, and throw it out. Oh well.
It is good to have a photo or illustration with a blog. I prefer to use a photo I have taken, or, if I'm lucky, a drawing my husband has done. Rick's cartoons always have humor, which can range from whimsical to perverse, and I have learned to trust his instincts for what a 'toon should be, even if I'm slightly horrified when he tells me what he's going to draw.
Now I'm going to go eat breakfast.
Okay, I'm back. When I think the piece is as succinct and clear as it is going to get, I post it. I go to my blog page, paste the copy in, upload images, and hit “Publish.” Then I read it and find the typos I couldn't see before. When I'm satisfied with the post, I send out a blog alert to an email list of people who might want to read it. Then I'm free for a while, until the need to write reasserts itself.
That's my process. The blog address is right here, if you're reading this. Thanks for asking.
Post Script: when this was published in The Loop, the caption of the photo said, "Bloger at work." I went back and checked my email from when I sent my column in, and I had typed "Blogger at work." So between my email and publication, the editor had dropped a "g" from the word "blogger." Now, if I had made the typo after writing about how I tried to catch all my typos, that would be ironic. If the editor of the paper, who is supposed to catch and correct mistakes, actually puts a mistake in, that's another kind of ironic, and completely out of my control. So it goes. Sigh.

Saturday, November 6, 2010

Kidney Transplants: Not a Cure



Rick Tuel: water worker, cartoonist, end stage renal disease patient, modern medical miracle. Photo by Mary

The first thing the Northwest Kidney Center tells you about having a kidney transplant is that it is not a cure; however, it is the most effective treatment for kidney failure we have at present.
The major obstacle to successful kidney transplants is the recipient's body's rejection of the new kidney as a foreign object. People who have kidney transplants must take anti-rejection drugs for the rest of their lives. That is why a transplant is not a cure.
When transplant surgery was new, it was only done from living donors, and between close matches such as identical twins. The development of anti-rejection protocols made it possible for kidneys to be taken from cadavers for transplantation, so now transplanted kidneys come from both living and deceased donors.
Kidneys from living donors tend to last longer than kidneys from deceased donors, but how long a kidney will last is an unknown. Kidneys from cadavers tend to last 15 to 20 years; kidneys from living donors tend to last longer, and there are people who have been going with a transplanted kidney for thirty and forty-plus years, but some kidneys fail immediately, or within a few years. You never know.
Sometimes living donors donate in a “chain.” Say your best friend Ralph needs a kidney, and you'd like to donate, but your blood and tissue don't match Ralph's. So you donate your kidney to someone who is your match, and a friend or relative of theirs donates a kidney to someone else who is their match, and so on, until some friend or relative of a kidney recipient is a match for Ralph, who finally gets a kidney.
Experience seems to indicate that the majority of kidney donors do fine with only one kidney, and both donors and recipients are required to go through rigorous testing and screening. It costs donors money to donate, by the way. That doesn't seem fair, but there it is.
Potential kidney recipients can be turned down for a variety of reasons. From what we heard at the Kidney Center, you have to be in the pink of health, except of course for your non-functioning kidneys. The committees that decide who will get a transplant do not want to “waste” a kidney when there are so many more people who need kidneys than there are kidneys to transplant. Many people who get on the waiting list for a kidney wait for years. Some don't live long enough to get a kidney.
The immune suppressant drugs recipients must take cause problems of their own: infections because the drugs suppress the immune system; sepsis; a form of post-transplant lymphoma (cancer); and side effects such as unwanted hair growth OR loss; obesity; acne; type 2 diabetes; etc.
A major problem with the immune suppressant drugs is that they are expensive. Not having adequate insurance to pay for immune suppressant drugs is a reason for being turned down for a kidney transplant in the United States. This will not seem important to you until you or someone you love needs a kidney.
My husband was diagnosed with end stage renal disease on October 5, 2009. In the last year he has had multiple surgeries and continual tweaking of drugs to keep him going, and he is now on peritoneal dialysis. Because he had cancer last year, he will not be considered for a kidney transplant until he has been cancer-free for two or more years.
It has been a hard year, friends, but we have been carried through it by you and other people as we adjusted to the new normal. Rick is starting to work again, gradually, just a little bit. If you see him out there spraying paint on the road to mark the location of an underground utility, give him a smile and a wave. He and everyone living with kidney disease is a modern medical miracle.

Friday, October 22, 2010

The Holy Halloween Candle Story



My cousin Charlotte called last night. She said she and Nancy were talking and she remembered the story of the holy Halloween candle, and the two of them decided that she should tell me. So she called, and here is the story, as close as I can make it to Charlotte's telling:
“I don't think you ever went to my house in Tracy. It's an ordinary three-bedroom one-story wood framed house, and it's on a tree-lined street. The whole street is lined with Modesto ash trees.
“Tracy was just a small town when I moved there back in 1977, only about twenty-five thousand people, but now it's grown so much, with condos and shopping malls. There are about 100,000 people there now.
“Around the corner from my house was the Parker Avenue Market, a little mom and pop store. When Nancy and I were kids visiting at Grandma's she'd give us each a nickel and we'd walk to a mom and pop store a couple of blocks from her house for a Popsicle, so we have good memories and we're so fond of mom and pop stores.
“The house had a small front porch, just the tiniest porch, and every Halloween I got the biggest pumpkin I could find and carved it and put it out on that porch where the kids came to trick or treat.
“Well, this one year I went and got this huge pumpkin and I got it all carved and put it out on the porch and then I went to get a candle, and I couldn't find one! So I went to the Parker Avenue Market for a candle.
Parker's Market had every little thing you might need – light bulbs and milk and everything else, but when I got there they only had one candle left, and you know what it was? It was a holy candle. One of the ones in the glass holder.
“Well, here I am, this Christian Baptist Catholic Pentecostal girl looking at this holy candle, and what am I going to do? This is the only candle Parker's has left. So I made the sign of the cross, and I said, “Oh, Lord, please forgive me for this sacrilege.” Then I bought the candle and went back home and put the holy candle inside the pumpkin.
“Pretty soon kids started coming for candy. The little ones came early with their parents, and then as time went on the older kids came. There were a lot of trick or treaters in those days. I think I had close to a hundred and fifty of them.
“It got later, after 8:30, and they weren't coming any more so I decided to turn off the porch light and close up shop. I was getting ready for bed when all of a sudden I remembered the candle.
“Now you know I'm very safety minded, and I was careful with candles because it was a wood frame house with a tree hanging over it, so I didn't want to leave that candle out. So I went out to get the candle to put it away, and it was gone! It had been stolen!
“I never figured out who stole it or why – was it kids being pranksters because it was Halloween? Did someone need a candle? Did they take it because they thought using it in the pumpkin was a sacrilege? Were they just thieves?”
Whatever the reason, that's the only candle that was ever stolen from one of Charlotte's Halloween pumpkins. We'll never know why.
So that, dear hearts, is the story of the holy Halloween candle. Wishing you all a good Halloween however you observe it, and a blessed All Saints' Day on November 1, when we remember all who have passed from us this year and in the years past.

Monday, October 11, 2010

Miracles Have Their Downsides



Photo: Rick at his first dialysis session one year ago. That's Jean, the RN, reading dialysis educational material to him. Jean experienced acute renal failure and was on dialysis herself a few years ago. She recovered. Many of the people who work with dialysis patients have experienced renal disease themselves or in loved ones.

It is miraculous what medical, scientific, and engineering geniuses have been able to do for people with kidney failure. Millions of lives have been saved by dialysis.
But what is it like to be saved? Fact is, the only reason anyone would do dialysis is to stay alive.
Think about it: your kidneys work every minute of your life, waking and sleeping, filtering out toxins, removing excess fluid (urine) from your body, keeping your body in chemical balance. Dialysis tries to do all that in 12 hours a week – three sessions of four hours each. Your blood gets sucked into tubes, run through filters, treated with various additives. You are tested to monitor blood composition and chemical balances so that kidney techs can do by hand what your kidneys used to do without you having to give it a thought. You have endless medical appointments, exams, tests, and surgical procedures. The medical community is constantly tweaking you, trying to keep you in balance and alive. Fistulas develop aneurysms; you get headaches; you pass out from low blood pressure (the Aid Car is called to the Kidney Center almost every day for a crashing patient); infection is a constant threat; your diet consists of chicken and white bread and not much else.
My husband Rick would go in for dialysis three days a week, and spend the other four days of the week exhausted and recovering from dialysis. When he went on Monday, Wednesday, and Friday, his favorite day of the week was Sunday. By then he was somewhat recovered from his Friday dialysis and he didn't have to go anywhere.
Like him, most people who are on dialysis are not able to work. Like him, most have to go on disability, or retire.
Sometimes the techs who hook you up to the dialysis machines don't hit your fistula on the first poke with the size 16 needles. Sometimes they get it wrong and cause an “infiltration” of blood into the tissues of your arm. This happened to Rick early in his dialysis experience, and his entire left forearm turned the color of a ripe plum. We have pictures.



Photo: Rick shows off his fistula


The dialysis techs work hard and have to move fast. They dismantle used tubing and filters after a dialysis session, clean the chair with antiseptic solution, and set up the new, clean, sterile filters, tubing, IV bags, iron and other supplements that are added to the patient's blood. They hook the patient up and monitor the patient – actually, they monitor several patients at a time - during dialysis. They are the foot troops in the battle against kidney failure. I read that they are paid on average $20 to 30 thousand dollars a year.
Have you tried to live on or raise a family on $20 to 30 thousand dollars a year lately? Granted it sounds like a lot of money to me right now, but that's from our perspective here in disability land. I'm saying that it's a shame that people who work so hard and are necessary for the survival of renal patients are paid so poorly. It's part of that inverse economic model we live in where the more important your work is, for example raising children, the less pay and respect you get.
Still, the techs do their jobs as quickly and efficiently as they can, while the patients sit in their individual worlds, reading, watching TV while wearing earphones, or sleeping, while time goes by in an eerie silence broken only by the alarms and beeps of the dialysis machines. Most patients are grateful to be alive. Patients are told that the more you dialyze, the longer you'll live. Dialysis is a miracle.
One day while Rick was waiting for his chair at the Kidney Center a frail lady in a wheel chair who had finished her dialysis was parked next to him. She reached a bony pale hand over and rested it on his arm. “How do you stand it?” she whispered to him. “How do you stand it?”
It's a valid question.
Maybe next time we'll talk about kidney transplants.

Thursday, September 30, 2010

Peritoneal Dialysis



Photo: our Ricky enjoys the overnight cycler. I was going to use this picture for the article in the newspaper, had it all cropped, formatted, and ready to go, then changed my mind because I spotted something in the picture that I didn't think we needed to put in the paper. See if you can spot what it is. Much more private posting the picture on the web, right?


Part three of a series on the treatment of renal failure. Why? Because a year ago my husband's kidneys blinked out like a couple of light bulbs, and renal failure has been the center of our lives since. Writers are always told to “write what you know,” so – renal failure. Part 3:
Peritoneal dialysis (PD) is a way of cleansing the renal patient's blood by putting dialysate, a fancy word for dextrose solution (sugar water), into the peritoneum of the renal patient, letting the solution sit there for a few hours (this is called the “dwell”) pulling toxins and extra fluid across the peritoneal membrane, and then draining the dialysate and putting in fresh dialysate and starting over. No bloodletting involved.
The peritoneum is the cavity in your torso where your vital organs and your intestines live. The cavity is lined by the peritoneal membrane, a sac that holds everything together and is rich in blood vessels.
The problem when PD was first used was that the abdomen had to be freshly punctured (this would be bloodletting) for each dialysis procedure, in effect putting the patient through surgery once or twice a week. Attempts to leave catheters in place were not successful because the site of the puncture or the peritoneum became infected.
PD was being used and improved during the same years as hemodialysis, starting before World War II, but was not used commonly until the 1980s. This was because Henry Tenckhoff designed a catheter that would not cause infection.
Dr. Henry Tenckhoff began working with Belding Scribner at the UW, that hotbed of dialysis research, in 1963. When Tenckhoff began working with PD patients, he had to go to their homes twice a week to perform the minor surgery of inserting a catheter into the patient's abdomen.
Dr. Tenckhoff observed that PD worked well and that PD patients did better in many ways than patients on hemodialysis. Eventually he developed what is now known as the Tenckhoff catheter, which could be placed into a patient's abdomen and left there, and with proper care would not become infected.
The Tenckhoff catheter is a piece of tubing which enters the patient's abdomen and has a coil inside the peritoneum. This inner bit has little holes in it, like drain field pipe on a much smaller scale. The holes facilitate the entry and exit of the dialysate. The outer bit of the catheter is a length of tubing with a connection on the end for attaching a tube to drain and fill the peritoneum.
Once patients have a Tenckhoff catheter placed in their abdomens and they have healed from the surgery, they are trained on how to do PD and then they do it at home, with frequent monitoring by a PD nurse. Testing is done frequently to monitor how the patient is doing and whether dialysis is working. Sterile dialysate is delivered to the patient's home about once a month.
There are two kinds of PD: manual, and machine assisted.
In the manual variety, the patient typically does four exchanges a day in which dialysate is drained from the peritoneum, and fresh dialysate is put in and left in – the “dwell” - for four hours or so, and then drained and replaced. An exchange takes 30 to 40 minutes.
In machine assisted PD, the patient hooks up to a cycler machine at night which does exchanges while the patient sleeps. Unfortunately the machines set off alarms if anything isn't quite right – not enough dialysate draining is the most frequent problem. So these patients might not get much sleep at night.
My husband started on manual PD, which turned out to be a full time job, but now he's on the overnight cycler machine. He feels and looks better than he has since he became ill over a year ago. We like PD, alarms and all.
Not everyone can do PD, but it's an excellent way to go if you can.
Next time: Kidney transplants

Monday, September 20, 2010

Hemodialysis Gets Serious







Photos, left to right: Dr. Belding Scribner, inventor of the shunt; Wayne Quinton, who built the first shunt; Dr. James Cimino, Dr.Kenneth Appell, and Dr. Michael Brescia, who pioneered the AV fistula which is used for hemodialysis today.

Dr. Willem Kolff built the first dialysis machines, but they were made practical for treating end stage renal failure by Dr. Belding Scribner at the UW.
Scribner grew up in Chicago, got his medical degree at Stanford and did his post-grad work at the Mayo Clinic. He joined the faculty of the School of Medicine at the UW in 1951. Like Dr. Kolff, he was deeply affected by the deaths of renal patients.
Dr. Kolff's dialysis machines could get acute renal failure patients through a crisis until their kidneys began to function again, but patients with end-stage renal disease could not be saved. Surgery to open up access to veins and arteries damaged blood vessels so that after a few treatments it became impossible for doctors to access a patient's blood.
Scribner said that one night in 1959 he woke up with the idea for a shunt in the patient's arm, using plastic tubes, one inserted into an artery and one into a vein, with the tubes connected by a piece of tubing in between dialysis sessions. He brought his idea for the shunt to Wayne Quinton.
Wayne Quinton was a medical engineer at the UW in charge of building, maintaining, and inventing medical instruments for the Medical School. Quinton figured out how to build the shunt Scribner had envisioned. Suddenly it was possible for people to have long-term dialysis, and end stage renal disease went from fatal to treatable.
Right: the Quinton-Scribner shunt

There were only six dialysis machines in Seattle, though, and there were more renal patients than could be treated. Scribner decided that he would not make the decision of who would get dialysis. A committee was formed to review cases and decide who would receive treatment. The formation of this committee is recognized as the beginning of bioethics. Such committees decide who will and will not receive organ transplants, for example.
Dr. Scribner worked with the King County Medical Society to found the Seattle Artificial Kidney Center, which became the Northwest Kidney Centers, in January, 1962. It was the first out-patient dialysis center, and was the model for how hemodialysis is done today. Currently any patient who needs dialysis gets dialysis.
Scribner and Quentin had revolutionized hemodialysis, but the shunt had problems – clots tended to form in the tubing, for example.
Comes now Dr. Kenneth Appell, who grew up in Queens, New York. After serving in the Navy in the South Pacific during World War II, he returned to New York to complete his medical and surgical training.
Dr. Appell installed many of the Scribner shunts, but was not happy with the problems they had, chiefly clotting in the tubing. He came to believe that it would be possible to create an arteriovenus (AV) fistula in a renal patient's arm. This means that an artery would be stitched together with a vein, with a hole (fistula) in between that would allow arterial blood to flow directly into the vein, thereby avoiding the problems of the shunts. Arterial pressure on the vein causes it to enlarge. It takes weeks to months for a fistula to “mature,” but then two needles can be inserted into the vein regularly to remove blood for dialysis and put the filtered blood back into the patient's body. This is the “gold standard” for hemodialysis today.
Two of Appel's interns, Drs. James Cimino and Michael Brescia, began doing Dr. Appell's AV fistula surgery in 1966.
Right: a drawing showing how an AV fistula is constructed within the arm


Since the 1960s, millions of lives have been saved by hemodialysis and the techniques developed by Drs. Scribner, Appell, Cimino, and Brescia and their teams.
As for Wayne Quinton – in 1959 he quit his job at the UW and started a business called Quinton Instruments to market his inventions which the UW declined to develop. Most famous of these were the Scribner shunt, and a treadmill he invented for cardiac stress tests. Every treadmill you see today can trace its history to the self-winding mind of Wayne Quinton.
Right: A drawing Rick made of his "wristula" in December, 2009, when he was healing from the surgery

Thursday, August 26, 2010

Rick, Meet Dr. Kolff



Photo: Dr. Willem Kolff, center, with two colleagues and an early dialysis machine

Last October my husband, Rick, was diagnosed with “end stage renal disease.” That diagnosis is every bit as serious as it sounds.
There are levels of renal (kidney) failure. There is “acute renal failure,” in which your kidneys may recover enough function to carry on. Rick had that in 1997, which left him with partial kidney function for 13 years.
“End stage renal disease” means that your kidneys are done. Period. When Rick was diagnosed, what had been our normal life came to a halt, and we began living a “new normal.”
You learn a lot when the earth moves under your feet in a bad way. One of the first things you learn is how gracious and generous people can be when they see a need, and people have supported us in every way since last October. There has been so much kindness, there have been so many prayers, and people forwarded money that helped us pay the bills. It is a cliché to say that if I tried to thank everybody by name, I would no doubt leave someone out, which would be a pity. Like most cliches this is true, so I will simply say: Thank you. You saved us. Yes, you. Please take our gratitude to heart.
Last October 5, when Rick received this diagnosis, we had no idea what was going to happen to him, and where it was leading. Where it led was to home dialysis. I could do a lecture on dialysis. In fact, I think I will.
There are two kinds of dialysis: hemodialysis, and peritoneal dialysis. Hemodialysis is the cleansing and filtering of blood. The idea was around for centuries, but the process as we know it was pioneered by Dr. Wilhelm Kolff in Holland during World War II.
Kolff was born on February 14, 1911, in Leiden, Netherlands. He became an MD in 1938, and one of his early cases was a 22-year-old man who died of renal failure. Dr. Kolff thought there ought to be a way to save such patients, and he put his considerable mind to the task. In his research he found an article by John Abel, a pharmacologist from John Hopkins University, who wrote in 1913 about experiments with dialysis in animals.
After the Nazis invaded Holland in 1940, Kolff persisted in figuring out hemodialysis despite the Nazi occupation. He and his family, friends, and colleagues risked their lives to invent a dialysis machine using what materials they had at hand, including cellophane sausage casings, a cooling system from an old Ford, parts from a crashed German fighter plane, and washing machine tubs. Kolff's original idea was to give compromised kidneys a break so they could rest and resume functioning, then dialysis would be discontinued.
The first dialysis machine was completed early in the war, but the first successful treatment of a renal patient by hemodialysis was not until 1945. This patient was a woman in a renal coma. She had been a Nazi collaborator, hated by the people in the town where Kolff lived. He believed he was a doctor, not a judge, and treated her. She awoke from her coma, said, “I am going to divorce my husband,” and lived another six years.
After that it was a process of refining and improving hemodialysis machines. He sent five of his hemodialysis machines to countries around the world, including the United States. The machines evolved from helping people in acute renal failure through a crisis into also keeping people with end stage renal disease alive.
In 1950 Dr. Kolff immigrated to the United States, and in 1956 he became an American citizen. In 1957 he went to the University of Utah and started a Division of Artificial Organs and spent the rest of his life researching and developing artificial organs, including the artificial heart. Robert Jarvik, one of Kolff's graduate students, was the project manager for the development of an artificial heart, and the Jarvik 7 heart currently is used in terminal cardiac patients as a bridge to heart transplantation.
Dr. Willem Kolff died last year, February 11, 2009, four days before his 98th birthday. All hemodialysis patients alive today, including my husband Rick, and patients with many other terminal conditions owe their continued existence to Dr. Kolff and his insatiable drive to invent and improve machines that saved lives.
Dialysis machines gradually were refined and improved, but one of the main problems – how do you get a person's blood out, cleansed, and then back into the person's body? - remained a challenge. This brings us to University of Washington professor Dr. Belding Scribner.


Next time: Dr. Belding Scribner, the fistula, and modern hemodialysis

Saturday, August 21, 2010

Boom! I say Boom!


Big excitement here last Tuesday - Obama came to town. That had all the news anchors twittering, but the real excitement was that some poor bozo who'd been away for a long weekend at Lake Chelan with his girl friend was flying back to Seattle and crossed temporarily restricted air space. Fighter jets scrambled out of Portland, Oregon, and about quarter to two it sounded like the whole world was exploding here: BOOM BOOM! The house shook, everything rattled - I couldn't imagine what it was - went to the kitchen door and again: BOOM BOOM! and again the house shook and everything rattled.
Very upsetting - we didn't know what was going on, and were looking for any sign of smoke, an explosion? Rick thought a neighbor was removing a stump. JD was in his room and thought a branch had fallen on the house. I didn't know what it was.
I drove up to town to pick up mail and looked for any sign of anything - nothing.
When Drew came home from work he solved the mystery for us: sonic booms, Obama in town, someone violated no fly space. Lordy. The guy in the float plane didn't know what was going on, landed at Lake Union and pulled in to Kenmore Air, the float plane base in Seattle, and he and his girl friend were in their car starting to drive away when someone stopped them and told him, Dude, you are in deep, deep kim chi.
The five o'clock news featured a video taken through a Kenmore office window of the guy (attired in a tank top, shorts, and sandals) having an extremely serious conversation with a Secret Service spook in dark suit & dark glasses. I'm told that Secret Service spooks have absolutely no sense of humor.
The girl friend was babbling to the TV interviewer: "We were clueless. We thought it was a quiet flight. We had no idea. I'm a hairdresser with a salon in Normandy Park!"
Just trying to distance herself from any ties to Al Qaeda, I imagine.
Meanwhile - the sonic booms scared the crap out of people all over Puget Sound, and crashed the 911 system in Tacoma. Among other things.
I guess Obama had a nice lunch at a bakery in Pioneer Square, and appeared at a fund raiser for Patty Murray, by the way. He was in town for four hours, and that was supposed to be the lead story on the five o'clock news, but the sonic booms came first.
I'll bet that pilot never makes that mistake again.

Tuesday, August 10, 2010

Letting My Freak Flag Fly



My goodness, it has been a long time since I've visited this space.
My friend, Susan, is recovering from her heart attack. She says she "died a little bit" that day. Scared the holy living crap out of everyone, too. But by the grace of God, rapid medical care, and a large dose of clot buster, she came back to the land of the living and I'm so grateful, as is her family, as are her friends. She is celebrating by doing more paintings (see above, "My First Self Portrait," which I really like)and by starting a new novel, which I wish she'd write more of so I could find out what happens to Martha, the protagonist.
So that's good news of a major kind.
The other major news, which you know if you read Rick's blog, is that Rick is now using the overnight cycler machine for dialysis. Yay! But - there's always a "but," isn't there? A qualified yay - the machine is finicky, persnickety, and a fussbudget. Rick has to watch it like a hawk to make sure it primes properly, and then if his first drain isn't large enough to suit the machine it starts giving alarms, and he ends up making phone calls to tech support, and to his PD nurse, Angela, who is a saint, really, at all hours of the night as the machine beeps and boops away. So he's still napping a lot during the day time to make up for the sleep he misses at night, and all is not bliss and happily-ever-after. Actually, when you have end stage renal disease, happily ever after is a pretty slim option, but damn it, you do the best you can, and the machine is both deliverance and pestilence at this point. More deliverance, so Rick is soldiering manfully onward as he and Angela and Baxter, the machine company, try to find the path where this method works best. It all takes time. It still beats going to Seattle three days a week for dialysis.
And it's kind of cool to see Rick walking around looking a little bemused because suddenly he doesn't have to go to Seattle, OR do manual exchanges during the day. Although he did do one today. Like I said, it's a time of tweaking the process.
People keep asking me how I am, how am I doing, what am I doing for ME. Um. Well. I'm somewhere between OK and ready to pop my cork. I could be either of those things, or both, at any given minute. Rick does not need physical care from me; he's fully functional. I hang around the house, do a little laundry, the dishes, sweep a floor occasionally, go out and pull a weed, and occasionally do paperwork like, oh, paying the bills. There are things I do not understand, like why his medical insurance through work paid for everything, and Medicare does not.
Also it seems that even though Swedish Hospital scans his medical insurance cards when he comes in for surgery, the information does not get passed along to the anesthetist or the radiologist, who send bills to his former insurance, which does not pay, and then we get these whopping bills in the mail and Mary starts to hyperventilate until I realize what's going on.
I still do not have medical insurance. I thought maybe I could get some once my Social Security started, but it started this month and I do not have enough money to get medical insurance. I am burning up brain cells, as usual, trying to think of ways to earn money. We'd like to do a Log of the Oatus book, and a Collected Spiritual Smart Aleck book, but these things never get much beyond the idea stage. Still thinking, still burning brain cells. We are going to declare bankruptcy, but, ironically, we haven't been able to afford it. Interesting.
One success: my hair is still growing. A pretty small thing, which requires very little effort on my part, but after two years it's getting long and it feels like an accomplishment. Ask anyone who has let their hair grow out - the accomplishment is getting through the middle stages. Originally I planned to let it get long enough to cut off and donate, but now that it is long, I'm not quite willing to let it go yet. Oh well. The longer I put off cutting it, the more there will be to donate, right?
And how pleasant it is to fuss about something as trivial as the length of my hair when there is so much to think about that is not trivial.
On that trivial note, I think I'll turn in. Blessings to you all. Thank you for all your prayers, good wishes, and material support. You have pulled us through so far, and we love you for it. Pleasant dreams.

Sunday, June 13, 2010

My Friend Had a Heart Attack


My friend Susan Bardwell, the painter of the picture in the previous post, had a heart attack today.
I've never met her in person.  She lives down near Houston, Texas, and is a funny writer/journalist as well as a talented artist. David and Jane Shepherd introduced us, via email, and we've had a daily correspondence for the last two (three?) years. Like me, she's a smart aleck; has two adult sons roughly the same age as our sons who live with her and her husband; and has a grandson who lives with them because his father (her older son) has custody, so she ends up being mommy most of the time. Our grand daughter lived with us for almost three years, age almost 2 to almost 5, so I got to be mommy again for a while, also. We relate.
She and her husband produce what she calls a "paperless," The Angleton Journal,an electronic web newspaper they put out every Monday, and she writes a humor column for it. I haven't written a humor column since Rick got sick, but know what it's like and commiserate with her on the misery of deadlines.
My favorite quote on deadlines, and I can't remember who said it, is: "I love deadlines. I love the wooshing sound they make as they go by."
Susan is NOT like me in that she is a pretty good judge of character. I tend to think that everyone's great, unless I take an immediate dislike to someone, and I've often been wrong in my first takes, mostly about that thinking everyone's great. Susan worked for years as a crime reporter for the Houston Chronicle. She certainly got well acquainted with the less attractive side of human character there, and minces no words when she expresses her opinion of same.
She's a fierce mama lion for her family, and loves her whole overextended family in a prodigal fashion.
We came up with the acronym FASTOB, which stands for, "fat, average, sarcastic, tough old broad." Our sisterhood.
Oh, carp, she's just a real great buddy, and I hate it that she had a heart attack. I know she had one, at least, before, in her early 40s, and had some stents put in, so I guess it's not totally out of the blue, but it stinks. It sounds like the EMTs and the local hospital got the clot buster (or whatever) into her before she was airlifted so the obstruction was removed - washed away - I don't know – soon, and by the time the helicopter has taken her to the big hospital in Houston (Herrmann, I think) she was feeling better.
Her husband said she was scared, but by the time they left her at the hospital in Houston this evening she was joking with them. She'll be in the hospital a couple of days at least.
I'm still praying, for her health, and in thanks for EMTs, techs, doctors, nurses, and hospitals. We've spent so much time in the precincts of these people the last year and a half, and have acquired such respect and appreciation for them.
I am hoping she continues recovering well, and after she's home I'm going to try giving her a call. We've never actually spoken to each other. I think it's time.

Wednesday, June 2, 2010

My Friend Paints; and Watch Out for That Tree


Greetings, Dear Hearts and Gentle People ~
Above you see a painting of a scene down at Tramp Harbor here on Vashon Island. You can see the mainland and a few pale peaks of the Cascades in the distance, off to the east. What's extraordinary about this painting to me is that it was painted by Susan Bardwell, my writer friend down in Texas, who has never been to Vashon Island, as far as I know. A couple of weeks ago when my friend Sonya was here to take care of me (us) when I had surgery, we went down to Tramp Harbor one day to commune with the water and the shore, and Sonya said, "Take some pictures to send to Susan to paint." So I did. I didn't know she'd paint something right away, but she did, and sent me the digital file, which you see here.
I really like it. A lot. Susan has started painting in the last few months, kind of to her own surprise. To hear her tell it she woke up one morning and decided it was time to do something different that was for her and for fun, and painting was it. She's been sharing some of her efforts since then.
In the foreground, the bottom left corner as you look at the painting, you can see the gabion cages, which are hefty wire netting that hold large rocks together to protect the beach and the road from erosion. That's one of the details of this painting that blows my mind. And one of the things you might look at and say, "What IS that?"
It's exciting to me. I am not a visual artist, but I love visual arts. When I try to draw, I can do okay, sorta - my best subjects have been sleeping dogs and cats, and chickens - but I've never been able to bring color into the mix. It is foreign territory. I'm a pencil and ink sketcher, and only every third or fourth year or so.
So watching Susan learn to use space and color and perspective the way she does - Rick says, "I wish I could paint like her. She's fearless!" - is an honor and a great pleasure.
And I'm hoping if I praise this painting highly enough she might send it to me for Christmas.

Watch out for that tree: It's a windy afternoon here on the island. I went out into the yard to whack a few weeds, and then sat in one of the old plastic Adirondack chairs that ornament our yard, and watched the tall trees that surround our house tossing in the gusts as they came and went. I like to sit out in the yard; it's peaceful, and because we are surrounded by trees and there is a circle of sky overhead, I can lay my head back and look at the clouds whizzing by and think about not much of anything.
That's what I was doing until I heard a crack. It was the crack of something in a tree breaking, some part of a large limb or trunk. When a tree goes down, or a big part of a tree, it starts with such a crack and then proceeds to make a lot of cracks which gather and multiply and crescendo until it sounds, I am told, like a barrage of small arms fire, and the noise goes on until the piece that is struggling lets go and falls free, plowing through the undergrowth with a sigh and a whoosh, taking a lot of smaller trees and bushes down with it.
In that undergrowth is exactly where you don't want to be when a tree lets go. Now, I am as foolish as the next person. I sometimes plan what I would do if I heard a tree begin to fall in my vicinity. My plan is to get to my feet and head for the house as fast as possible, on the assumption, perhaps mistaken, that the house would shelter me from the force of the blow. Unfortunately I have lived long enough to know that what I'd probably do is sit there frozen and hope that tree didn't fall on me. A tree went down about twenty feet from our bedroom during a night storm some years ago, and as I heard it go I did not move, just froze there in bed and waited for it to be over. It fell the other way, into the ravine. Lucky.
That is why when I heard that crack I decided to come inside. So I did. And that brings us up to date.

Monday, May 24, 2010

Good News Today


It is Monday, May 24, 2010, and today I went to see the surgeon who did my lumpectomy last week and got the news: NO CANCER.
Then Alice brought me home and we watched "Death at a Funeral" (British version).
It has been a very good day.

Friday, May 14, 2010

I Am No Longer Unemployed


Today was a milestone: I have been unemployed since the summer of 2007, but today that changed. Today I retired.
It wasn't as easy as they'd like to make you think when you go to the Social Security website. They have videos featuring Patty Duke and Chubby Checkers – talkin' about my g-g-generation – telling us how quick and easy it is to retire online. Do it now! It's easy!
It's easy if you aren't as easily confused as I am. I tried to retire last March, because I'd been told to apply a couple of months before I turned 62. Being the good girl I am, I went online and began the easy process.
It was easy right up until they asked, “Are you able to get a job?” I said, “No.”
Big mistake: suddenly I was off the mainline to Retirement City, and shunted onto the sidetrack of the 7% incline of applying for disability.
Why I said I was unable to get a job: first and foremost I have a full time job doing paperwork to make things happen for my husband.
Second, okay, so I can't walk or stand for long because of various accidents that have left me bunged up and arthritic, but I'm not entirely sure that counts because there are plenty of people who can't walk who are employed. In my present condition I admire them quite a lot for making the effort, because I now have an idea of what it takes, but my mind and my fingers still work – sporadically most days, but that's not uncommon at all at any age – and that's enough to work in this society. Except...
Third, I'm over 60. I'm not the employee most places want. It's hard to find a job at any age for most people right now, but more so for what my husband calls the nouveau elderly, and if you doubt me take a random poll of people over 60 looking for work.
So I didn't want to apply for disability, but suddenly I found I had. I screwed up, and I didn't fix it, because I didn't understand how badly I had screwed up. I might be able to get disability because I am kind of disabled, but it would mean more of the kind of paperwork I've been swamped with for the last six months, and I'm tired, and we're broke. I simply wish to retire.
Then, this morning I remembered that I had the number of the man at Social Security who processed my husband's disability claim (my husband qualified easily, and all I can tell you about that is that if you can qualify for disability easily, your life sucks and blows).
I tried calling that number, and the man answered, and I told him what I wanted to do, and he was kind and humorous and helpful and fifteen minutes later, I was retired.
My head's been spinning the rest of the day. My friend Sonya is here visiting and she's heard me say, “I'm not unemployed anymore! I'm retired!” so many times to so many people that I expect her to say, “Enough already!” but she's been a really good sport about it and says she's happy for me.
So if you're thinking of retirement and the Social Security website lures you in with their red, white and blue promises of how easy it is, go ahead and retire online, but be vewy, vewy careful (Elmer Fudd was big for my generation, also).
Be prepared, also: if you watch the cute Patty Duke video telling you how easy it is to retire, you might be walking around the next few months singing in your head, “Because they're cousins, identical cousins just the same...” And if you don't remember that, you might not be part of my g-g-generation.

Wednesday, May 12, 2010

The Grinding Wheel Grinds Slow But Small


Every year it seems that life has become so much more complicated that it couldn't possibly - watch out!
Know what I mean?
I learned today that I do not qualify for Medicaid because I am not blind, or 65, or disabled. Not being able to walk very well or to be able to stand up for long or to do much is not the same thing as being officially disabled. And even if I am, in fact, disabled, I still have trouble with the label, although I really appreciate my handicapped parking sticker on the days I really need it.
So I'm still uninsured, and I'm having surgery next Wednesday to remove the lump that probably isn't cancer but no one wants to take any chances. The good news: well, it probably isn't cancer, that's the good news. The other good news is that Swedish has a charity program that will take care of the costs of my surgery. So I'm told. This knowledge leaves me free to worry about the surgery itself, not paying for it.
It's enough to worry about.
I did qualify for a little food stamp credit, and that was good news, too.
We're reaching that point now, when most of our assets have been exhausted. The months of attrition are having their effect. Tomorrow I plan to cut off the cable and the land phone line. I will cling to internet a while longer, because I spend so much of my life on the internet, reading or answering emails, researching the odd questions that arise daily, looking up information which I have to save and print and pass along to other people - it is my connection to the outside world.
I was told to rest up before my surgery, so I would react to it better. I laughed. Rest up - yeah, that's a great idea. I must try that.
Seriously, I suppose I must. It won't be a great big surgery, but really, is there such a thing as "minor surgery?" Isn't having the body cut open and having a piece of it removed, doesn't that sound sort of "major?"
I am blessed in that my friend Sonya has agreed to drive me in to the hospital and back on the day. That was my biggest worry, truth to tell. I've done it so many times for Rick, but he's not healthy enough to do it for me - and he might have to do dialysis that day. So.
As a reward, Sonya will get to spend time with me after I have been given painkillers. I have been told I am quite amusing when stoned. Although I do tend to order things online and forget so I'm completely surprised when packages arrive. Oh well. That sort of mistake required credit. Remember credit?
Rick and I lay on the bed together tonight, holding hands, and talking about how strange it is that we cannot do everything for ourselves anymore. For so many years we took it for granted that what needed doing, we could do. No more. Suddenly we are, if not old, then unable. Disabled. Odious word, odious condition.
My beloved and beautiful cousin Nancy had her second round of chemo today. She said tonight she was tired. Some time soon, this summer or next, we'll go to the ocean together, and talk about our family, and how great life is, and how beautiful the ocean is, and how fortunate we have been to have one another.
How fortunate we all are to have one another. There, that's my profound statement du jour. Stick around. It's got to get better.

Friday, April 30, 2010

The Moon Is Bigger in New Mexico


My brother and sister-in-law, Allen and Barbara, have lived in New Mexico for many years. I've been there to visit twice, once back in 1993, when I took our sons, JD and Drew, on a train trip across the country to visit Rick's relatives in Ohio and to visit Allen and Barbara on the way home. It's very convenient to go by train, because the train stops in their town, Raton.
The second time, which I must have blocked from my memory when I first wrote this post, was three weeks before my mother's death, when she was staying with Allen and Barbara, in 2001. But that is a story for another time.
Their home is on a hill on the northwest side of town, where they have a view of the mesas in the distance where the interstate trails off to the south, to Las Vegas, and Pecos, Santa Fe, and Albuquerque. But from their house you see "miles and miles of nothing but miles and miles," sky and mesa and the land stretching out before you.
As perhaps you can see here.
My brother took this picture the other evening, and sent it out "with apologies to Ansel Adams." I told him that no apologies were necessary, and asked if I could share the image with people, and he said please do.
So here it is, Moonrise Over the Mesa, by my brother, Allen Litchfield.

Sunday, April 25, 2010

Thank You for Listening to Me Bitch

Sometimes a catch phrase catches on:
"You might be a redneck..."
"Here's your sign,"
"Would you believe?"
"Where's the beef?"
"Did I do that?"
And so on.
I have decided that my new catch phrase is, "Thank you for listening to me bitch." Last night I was talking to Rick, and every once in a while I would realize I was complaining or ranting about something, and I would say, "Thank you for listening to me bitch." He says it's OK, I do the same for him, and that's true.
It's not written into the wedding ceremony, or at least any ceremonies I've seen, but part of being married is listening to each other complain, gripe, whine, bitch - whatever you're calling it in your relationship. It's a loving thing we do for each other.
Some people will abuse the privilege. Our older son, JD, tends to rant, and as he rants he builds up a head of steam and starts pacing around the room, and after ranting and pacing for quite a while he paces right out the door, ranting over his shoulder as he goes, and you're left sitting there in the silence wondering what that was all about.
It was about bitching. I wish he'd learn to say, "Thank you for listening to me bitch." I'd feel better.
You know how it is - you marry someone, you figure you made a choice. While you may have chosen to give birth, you were only the passive container of these little aliens who became your children, and their personalities often have traits that if you'd had a choice, you'd have said, "No, thanks."
If they're 28 and living with you again and subjecting you to traits you wouldn't have chosen, like marathon pacing rants, you might wish for a little acknowledgment on the kid's part that you're doing something for him while he sputters, pops, whines, and disgorges his discontent.
Well, he doesn't acknowledge that we've done anything for him, but it's made me think that when I'm ranting about something I owe my listener a thanks, at least, and if it's my husband, I owe years of thanks for listening to me. So the least I can do is say it.
Thank you for listening to me bitch.

Thursday, April 22, 2010

Setback

My husband has had a setback in his dialysis progress, which you can read about on the other blog.
I am just tired. Today has been spent digging through papers, sorting, tossing, making phone calls, answering phone calls, doing over the phone an application I already did on paper wrong, so it had to be done over.
Rick and I are both feeling a little down over how things have gone. We felt he was so close to getting onto the overnight cycler machine, which, for him, meant he was close to going back to work. Now that hope is dashed, at least for the time being.
My own struggle is with paperwork. There is so much of it. And that's all I'm going to say about that.

Monday, April 12, 2010

My Special Peanut Butter and Jelly Sandwiches


Picture by Nancy Reeder

My cousin Nancy sent a nice big Easter package with gifts and games for our grand daughter, and there was also a sealed brown paper lunch sack for me. When I opened it, out came a mini-jar of jam and a single serving container of peanut butter, and a copy of this story:

My Special Peanut Butter and Jelly Sandwiches
As a young girl I took many family trips. I have many fond memories of these trips. But it is my own special little trips close to home that I cherish and remember the most.
There were days when I just couldn't deal with things and would want to "run away from home."
My beautiful loving mom would sense the need for me to follow through with my plans. I am sure she realized it was my way of coping with what ever was on my mind that day. I would say to her, "I think I'm going to run away today, Mom." With her sparkling green eyes and loving smile, she would reply, "I can help you pack if you want me to. Would you like me to make you a peanut butter and jelly sandwich?"
Together we would pack a brown paper sack with some clothes as well as make that peanut butter and jelly sandwich.
Mom would give me a big hug and kiss, then say, "I love you," and "You are always welcome to come home."
You have probably figured out by now that I only went to the end of the front porch. She was a very wise woman.
I am 62 years old and dealing with cancer. Yes, I feel like running away, but I think I will have a peanut butter and jelly sandwich instead.


*
You can stop reading this right there if that's enough for you.

I sent this story to several friends with this added message:
My cousin Nancy is fighting colon cancer now, and she knows that my husband and I are going through our own hard times, and she wanted to cheer us up by sending us this story and the peanut butter and jelly. She did.
Her wise, beautiful, mother was my father's sister, my aunt Vivian, whom everyone called Chick. Chick had multiple sclerosis and passed away at the age of 43. Chick was in a wheelchair all of Nancy's childhood, and I can see why Nancy might have wanted to run away sometimes.
As I thought about this, I thought, you know, this reminds me of the emails that come around on the internet, and, just for the fun of it, I'm going to put this out there, and ask the people to whom I send it to pass it on to people who might enjoy it, and then see how long it takes for it to come back to me from a complete stranger who has read it and been cheered by it. Then I can say to Nancy, "Look, your story has been cheering people up around the world." And that might cheer her up.
  Probably won't hurt peanut butter and jelly sales, either.
  Are you game? Two requests: send me an email saying "thank you, Nancy" at:
shipoftuels@hotmail.com,
 and I'll forward it to her, and then please pass it along. The thank yous will tell her what an important person she is, and passing it along - well, we'll see what that does! Thank you!
blessings, love, hugs
Mary
*
Well, I sent that out last night, and as of this morning I've had over 30 replies from people saying thank you to Nancy for this story. I started to forward them to Nancy, and then realized that I would be clogging up her email inbox, so I started copying and pasting replies into a word doc. Then I copied all of them (so far) and pasted them into one email to Nancy.
My cousin Nancy is an extraordinary person whom I have loved, admired, respected, and looked up to my whole life. She has tackled life with good humor against great odds and adversity, and she still keeps plugging away – even when she'd rather run away.
As I read people's replies to Nancy's story, I found myself tearing up. That's not unusual these days; my husband is ill and the challenges of getting along are sometimes dire. But the way people pull together to provide encouragement, inspiration, and love to one another in the hard times – man, that's almost enough to make me revise my occasional conclusion that people are no damn good.
Thank you, Nancy, thank you, everyone who is being touched by Nancy. Sometimes when you're somewhere past the end of your rope all it takes is one person to love you, understand how you feel, and make you realize you're not facing your troubles alone, to help you regain your grip.
So thank you.

Friday, February 26, 2010

The Constancy Waltz

Life is not offering much in the way of fun and encouragement these days, so the thing to do is sing. So here's one of my songs.
Once upon a time, a long time ago, someone said to me, "I'm making a list of people who I want to be in the nursing home with me, and you're on it." I thought this was a high compliment, and in the spirit of that compliment, I wrote this song.
It's as much about friendship as romantic love - it's about marriage, and other challenging relationships.
I made a video last night that I am replacing with a new one. In this one I remember all the words! Yay!

A brief word about my hair: this is how it looks right after I wash it these days. It has taken two years to get it this long. I had the idea that I could be this aging hippie woman with long flying frizzy gray locks. So far, so good. Then I thought I could let it get long, and then cut off the length and donate it to one of those organizations that make wigs for people who have lost their hair for medical reasons. It seemed like the most effortless way of doing good. What could be easier or cheaper than letting your hair grow? Well, for whatever reason, it's long and some days, like this morning, I want to grab hold of it and whack it off, but I haven't yet. One of the cool things about it - people don't recognize me with long hair. Kinda fun to walk through a small town where you've lived for decades and not be recognized.
Song: The Constancy Waltz, copyright 1987, 2010, Mary Litchfield Tuel. All rights reserved. video

Tuesday, February 23, 2010

Why Don't I Get a Job?


This question has been directed to me so many times lately that I thought I would address it.
Yes, we are in dire straits financially. Rick, my husband, who was our sole support, has been unable to work since last October 5. We have lived since then on the incredible kindness and generosity of friends and family, and what savings we had. It is truly mind-blowing, to use the idiom of my youth, how kind and generous people have been. Some have gone so far as to contribute more than once, which at this time, when we are in the gap between our resources and Rick's disability payments and my Social Security, means more than ever.
People who are not in a position to give money have given from their hearts – time and love and art and chocolate, gifts both tangible and intangible, which have carried us through.
The obvious question that occurs to many well-meaning (and perhaps some not so well-meaning, I'm not naming any names here) people, is, why don't I get a job?
The first time I was on the receiving end of this rather sharp question, I was flabbergasted. I muttered about how I couldn't work because of various physical disabilities – my crappy knee, my broken back, nerve damage, chronic fatigue, etc., none of which cut any ice with my interrogator. I should get a job sitting down. I should type envelopes at home.
“There, I fixed it.”
Now that I've been hit with the question a couple more times, I'm starting to get my smart ass together: “Oh, I dunno. I guess I'm just a slacker.”
Another answer might be to slap my head and say, “Why didn't I think of that? A job! Of course!”
Maybe as I get it more together I'll be able to put together a written response which I can print up and hand to people. This is a start on that response.
One friend suggested that I reply thus: “OK, you come over to my house and take over what I do. Fill out and copy and organize the paperwork for Social Security, DSHS, the Kidney Program, the hospital, the IRS, various doctors and utilities and whoever else is standing in line with a hand out for our identity, income, and intentions. Figure out how to pay the bills and balance the check book and buy the groceries on what money we have. Buy the groceries - make sure there's coffee and cheerios and toilet paper and paper towels - and the prescription drugs and other requirements of Rick's illness. Drive Rick to his various appointments, procedures, and surgeries. Wait while he's there, or run errands that need to be done. Cook meals, wash some dishes, keep laundry moving, sweep and vacuum floors now and then, pick up the mail, pay the taxes, licensing fees, insurance premiums, etc. Keep track of the paperwork and dates regarding the lawsuit that has been laid on us by the woman who fell off our porch and wants lots of money. Come on over and do this and whatever else that comes up – cleaning out the perennially clogged storm drain, feeding the dog, making copies and typing dictation for Rick – do all that for me, and by golly, I will go look for a job.”
Of course I am fat and 61 and half crippled and don't have a degree and don't know all the computer programs that are mentioned in the job advertisements, but what the hell, I can get some shit-paying clerical work I suppose. Maybe. I hear it's hard to find a job these days, but it's usually easier to find a shit job.
If all I had to do was go to work and come home, it would be a nice break. Unfortunately, if I had a job, I'd still have to do all that other stuff, and I'm already pretty tired.
So that's pretty much why I don't get a job.

Monday, January 18, 2010

How Can I Keep From Singing?

video
Women, Women & Song used to sing this song, in three-part harmony. We started our first concert with it, and we ended our last concert with it.
You might say the song resonated with me. I first heard it sung by Pete Seeger, long, long ago, and then by a lot of people, including me. I sang it during labor with my second son; I sang it in the ambulance on the way to the hospital after my car accident ten years ago. The singing seemed to ease the pain.
It's a great song, and I know that I am only one of many who love it.

Tuesday, January 5, 2010

Happy Birthday, JD




Photos: John Devon at age 6 days, January 11, 1982, and John Devon and his baby, Allysan, last March.
Our older son, John Devon, or JD as he goes, was born 28 years ago tomorrow morning. A friend told me the other day that she had found a 1982 journal which she never used, and hey, guess what? 1982 and 2010 are the same! So she's using her 1982 journal this year.
So it was on a rainy Monday night 28 years ago I was lying on the couch watching a PBS version of “The Elephant Man.” It was a play, I think – it was not the movie of the same name which starred John Hurt and was a big hit at the time. So I was lying on the couch when I felt a “woosh” of water coming out of me.
Oh great, I thought. I've finally lost complete control of my bladder.
So I went to empty out what was left in my bladder, I thought, and was most intrigued to see little white specks of something floating around in the urine. I called my midwife, Susan Anemone, to report this strange turn of events, and she said, “Oh! Your water's broken! You're going to go into labor!” She was very chipper about it. I was stunned.
You'd think that nine months would be enough to prepare for giving birth. That's what nature gives you, more or less, in the usual order of things. I had wallowed in being pregnant. Loved to go around telling people how much I was enjoying pregnancy, I felt great, and that was true. When I was pregnant, my migraines went away, for one thing, and that was like being let out of prison. So I loved it. I read books and waddled around with a big grin and generally acted and felt like I was the only woman who had ever conceived a child. So, hurray, pregnancy.
Of course there was that point about half way through when I sat down and sobbed because of the lonely truth that there was only one way that baby was coming out, and it wasn't going to feel good. I was scared of labor. I was even more scared of how my life would be after the baby came. I would never have a private moment again. My days of puttering around the quiet house with classical music playing in the background were going to be over. These are the fears of a person who had never had much to do with children. I was right about that loss of privacy and solitude, but oh well.
There was a huge storm that night of January 4-5. We were swamped with snow. Down in California the rains were torrential. Mudslides in the Santa Cruz Mountains killed people that night, and elsewhere Highway 101 was closed by slides. I've heard since that many babies are born on stormy nights. Something about the drop in the barometric pressure, or something, sets off labor.
We were snowed in and all the plumbing frozen for days after John Devon was born. I finally begged, nagged, and entreated Rick to make it possible for me to take a bath. He took pity and thawed out the plumbing. I showered and was so happy.
But that night, that snowy stormy night, there I was about to be a mother and not believing it. Could this really be happening? Proof was soon to strike in the form of labor.
The first contraction hit about ten to midnight, and hit is the right word. Holy gazoly. There was no gradual build-up in intensity, it was just bang, hard labor, right now. Contractions that knocked me down and took my wallet.
Rick timed the contractions and breathed with me, and after a while we thought we should call Susan and ask her to come. She lived two or three miles up the Westside Highway from us. She was one of the founders of the Seattle Midwifery School, and the plan was for one of her partners to catch a ferry and come over when I went into labor. Well, it was two in the morning and there was a raging blizzard. She realized that she was going to have to improvise.
Susan woke up her husband, Barry, bundled up their nine-week-old son, Gabriel, and they traveled the two or three miles to our house in the snow. It took them about 45 minutes.
By this time I was completely lost in labor. My leg muscles were quivering like jelly and I really didn't see how I was going to make it through, but somewhere in there I decided that since I'd made it this far, I might as well carry on. Nice when reason decides to defer to reality.
Susan put Gabriel to bed in the crib that was waiting for our baby, and she and Barry and Rick were my team, coaching me, encouraging me, telling me what a good job I was doing. About five in the morning she said I was ready to push, and I did, for about forty minutes, and then, at ten to six in the morning of January 5, 1982, almost exactly six hours after the first contraction, our baby boy came out to meet the outer world.
He was, of course, the most beautiful thing we'd ever seen. We were instantly in love, absolutely mad with adoration for this child. Barry and Rick pulled the labor sheets off the bed, and removed the plastic sheeting that had kept a set of sheets underneath clean, and baby John Devon and I crawled in to have a well-deserved rest, after first calling the relatives, of course. Susan and Barry took Gabriel (who had slept through the whole thing) home.
The world outside was a snowy wonderland, and the world inside was the world of baby love. We were well and truly besotted, as most new parents are, and so taken with this tiny miracle.
Another midwife had given me the lowdown on children when I was pregnant: “This kid is going to give you some knocks.” I'm not sure why she said it; maybe I was so naive that she felt the need to slap me around with a little reality. I was a little shocked, and a little hurt. My baby was an angel, my baby...
Well, 28 years on I'd say she had a good point, but I'm not sure I needed to hear it mid-pregnancy. The dashing of parental dreams happens in its own time, naturally. Babies turn out to be children, and children become teenagers, and teenagers become adults, and by that time a parent's innocent dreams of long ago are a dim memory. I know I had them. They have been overwritten by 28 years of days.
JD, it was a good day when you were born. We were so happy. We had never loved anybody like we loved you, and that memory is not dim at all. It is bright and I can feel that love all over again thinking about that time.
Happy 28th Birthday, kid.