Reading at my local independent bookstore. Faces of friends smiling kindly at me, with an occasional stranger there as well. I begin hesitant. Unsure. I have never done a reading of my own material before. But as I read I gain confidence. My characters take over. It is their experience that I am sharing. Soon I hit my stride, explaining, exhorting, extolling. This is the story of the women’s movement that I lived and I am proud to share it. This is also the story of inequities addressed, and it is the inequities that stir me. I say, “Look at what we accomplished! Title IX and the result of thousands of girls yelling ‘yee-haw’ as they burst onto the field. Sexual harassment no longer okay. Fathers able to carry their children about without inviting scorn. And on and on and on.” And then I pause. Wait. This work is so far from done. I read statistics about inequities in pay. I read statistics about maternal deaths and infant mortality rates and how we still are not fairly represented in our Congress or in our statehouses or how our children still don’t have affordable care. My passion rises. I am loving this work. The bookstore sells every copy of TAKE ME TO MERCY that they have on hand. I stumble home through the night on my husbands’ arm. Content.
There came a morning when I couldn’t walk up the hill. Standing outside the door, looking up towards the place where the car was parked, I knew that I simply could not do it. I’d felt sore and stiff in the joints all week; after all, I’d done the 5K walk through Medford just the last week-end (and why do they say it is “For Breast Cancer” when in fact it is because we are against breast cancer). Anyway, feeling virtuous but tired, I’d expected some sore muscles… but nothing like this. My body would not move – my 5’2 frame suddenly became the bearer of the weight of 10 elephants, my weariness became so profound that I could not drag my feet.
I sat down on the sidewalk and started to cry.
Scooping me up, my family took me to the doc, who smiled indulgently and said, “oh for goodness sakes, its only arthritis. My mother has arthritis and she takes her pills and doesn’t complain. So, just go home and take mega doses of aspirin and you’ll be fine.”
And so I did. Here I was, not even 50 years old, and I had arthritis. It appeared to be a simple fact. It was time to just suck it up and take care of it. Obediently, I took three aspirin every morning, and another at lunch, and two at night. I did that for about two weeks, until the bruises on my legs and the queasiness in my stomach gave me pause. I mean, what the hell? Was I supposed to trade in my stomach and my vanity for my joints? That didn’t seem right to me.
I went to another doctor. This time, on the advice of a physician friend, I went to a rheumatologist. I went to the best rheumatology practice in our area. Everybody said so. I was given an appointment three weeks away. I waited, waking every morning to painfully swollen knees and feet, heat radiating off my hips, pursing my lips, gritting my teeth and making myself move.
Finally, it was time for the appointment. The doctor gently manipulated each of my joints, clucking over the limited range of motion. She listened to my litany of aches and pains. She took my family history (carefully noting that my paternal grandmother had rheumatoid arthritis, a fact that had been told and retold to me for years). She ordered a few blood tests. She guessed that it was probably not just regular old arthritis, but my grandmother’s RA. She wrote me a prescription for a powerful NSAID, sent me to the office down the hall to be fitted with orthotics for my shoes; gave me exercises and stretches to do, and made an appointment for me to come back in 30 days.
I cried with relief. Finally, a serious and careful response to what had become a major crisis in my life. I really needed to be able to move my body. I had children at home. I had a full-time job that required my ability to move about the theater’s large campus. I had a garden. I was filled with hope.
Jump ahead about two months. The tests came back saying that, yes, RA was “indicated” – no RA factor, but lots of inflammation indicated by a nasty SED rate. The bruising had stopped when I stopped taking the aspirin. The nausea and stomach upset had continued, however, and although my pain was considerably less, it was still and all – present.
All of my research said that RA was not curable; that it was likely to be progressive (another one of those misnomers – I mean, there’s nothing progressive or positive about becoming increasingly crippled – seems they should say that it was like to be regressive). I read about people with hands so bent they couldn’t feed themselves. I read about people in wheelchairs. I read about terrible pain. Weight loss. Misery.
One of my mother’s closest friends, a world-famous poet, had suffered with RA since she was a young woman. I called her. Instead of receiving the loving tenderness I expected, she delivered a swift and stern lecture. “This is big time, Kathie. Take your medicine. Do your exercises. Don’t complain. Don’t become ‘an arthritic’ – it cannot be allowed to define you. Simply do what you have to do and learn some stoicism. It is what it is. Accept it, and go on.”
By this time, I was walking with a cane, dealing with pitying stares and people suddenly speaking louder (as if I was deaf for god’s sakes!). We lived in a house with an upstairs, and I would holler up instead of walking up (feeling like a shrew). I wasn’t going to have it. I figured that if western medicine couldn’t cure it, maybe some other medicine from some other culture could cure it. Arthritis is, after all, one of the oldest diseases known – the earliest homo sapiens had it. So somewhere along the way, somebody had to have figured out how to cure the damned illness!
I decided to go on a hunt. Calling upon every resource I could find, I set up a series of appointments. I visited with a naturopath, a shaman, a chiropractor, an acupuncturist (an old man in a small office upstairs above a restaurant in San Francisco’s Chinatown), an Alexander Technique teacher, an osteopath, a neurologist, a yoga instructor, a masseuse. They all said that they could help me, offering up various things to ease my symptoms, but agreeing with the basic premise that arthritis was not curable, was progressive, and all I could do was slow it down and make it a bit easier.
A friend made me a beautiful hand-rubbed and molded cane out of a pear-tree branch. My good hearted husband filled in for me when I couldn’t move about. Everybody was quite indulgent.
Me? I was miserable. I hated being in pain. I hated being hemmed in by my own body. I was not being a good sport at all.
Still nauseated, I stopped taking the NSAID’s, except when I was in real trouble. Instead, I concocted my own therapies, taking a bit from each of the experts I’d consulted. I had regular massages, I worked with an Alexander teacher to help me learn how best to align my head with my neck with my spine, and most importantly, how to respond to pain by relaxing my muscles instead of clenching them. I did some yoga stretching every morning, I forced myself to walk every day. The rheumatologist had taught me some hand exercises and I did them religiously (I still do -- I spend a lot of time at the computer, sew, paint, and play the piano and I am terrified of losing my hands). In spite of advice to the contrary, I found that hot baths helped to ease pain. I took fish oil capsules twice a day. I tried not to be grumpy. My rheumatologist was tolerant of my fumbling about; my regular physician was haughty and dismissive. My family continued to be supportive.
Life went on.
I don’t know if it was the therapies or the smiles of my children or simple dumb luck that made for a remission, but I finally got one. Eventually, I returned the cane to the creator, allowing her to hand it on to someone else in need. I continued with the morning stretches to deal with the stiffness that came with the break of each day. I continued with the daily walking, the hot baths in the evenings, occasional doses of Ibuprofen when I really needed it. But I was, truly, better.
Jump ahead a few years, and I again began to have what I called hot hips and hotter knees. Pain was pretty limited to the waist down – my hips, my knees, my feet. The rheumatologist I had seen in the early days was no longer in practice locally. I went to another rheumatologist for advice. When I got to his office, they escorted me down the hall to an x-ray lab, x-rayed not my feet or my knees or my hips, but my hands. I then sat and waited. Forty-five minutes later, he burst into the room, flapped his hands at me and said, “you don’t have rheumatoid arthritis; I don’t know what you’re up to, but you should not be here.” Stunned, I tried to talk, “Wait! What?! Wait!….” But he was already gone.
Then my cousin, a physician, told me that he didn’t think that our grandmother (long since dead) ever had RA. He thought she had some other auto-immune illness.
I went back to Square One. I began to do the exercises in earnest again. I had another round with a masseuse. I swallowed more Ibuprofen than I probably should have. I forced myself to walk harder and longer. Sometimes I wore a brace to give my back some support. I simply did not know what else to do.
And so that is where I still am – 24 years after that first episode of whatever you call it, whatever it is. My hands are still pretty much okay, although the little finger on my right hand is bent, and several other fingers are beginning to knob up. My hips are sometimes hot and painful; likewise my knees and my feet, but mostly, I’m okay as long as I walk every day, and pay attention to fatigue and to the lessons from the Alexander teacher. Most people who know me, haven’t a clue. If they see me mindlessly massaging my sore knees, or stretching out my back after a long sit, I simply explain it away as “old-timers stuff.” I don’t talk about arthritis with my family any more. I don’t complain. I’m a stoic. I’ve accepted my little carcass with all its aches and pains and coping abilities, and thank my lucky stars that whatever it is that I have is mild enough that I can be stoic.
I don’t know if I really ever did have RA. I didn’t ever have that explicit factor in my blood – but blood work still shows inflammation (my SED rates are sometimes pretty alarming), and those old hot hips and sore feet and knees still sometimes whisper nastily “psst, nah-nah-nah-nah-nah-nah, you’ve got arthritis!” The GP I switched to years back put me on statins for a while, thinking that they’d help to reduce inflammation, but then the statins made me exhausted, so we’ve stopped that. We are still trying to figure things out. But mostly, I think that I’ve been lucky lucky lucky.
My advice to anybody dealing with this is a softer version of what the arthritic friend told me lo these many years ago: Take your medicine. Figure out which exercise eases your pain (swimming? Walking? Yoga?), and then do it every day!. Don’t mess around, take this seriously. Demand that others give you support. Make yourself move (the more you move, the less you hurt). And when you hurt too much, rest! But also, don’t let it define who you are. You are not “an arthritic.” You are not hobbled. You’ve just got some shit to deal with.
Be brave. Take care of yourself. Carry on.
A warm and sunny day in San Francisco. Days like this happen more than people think, particularly in this neighborhood (Noe Valey), and it’s glorious. I know. I grew up here. Right up that hill. I went to the elementary school around the corner, trudging to and fro down and up the steep hill with my metal lunch box and papers and books clutched in my chubby arms in those pre-backpack days, tough little legs unaware that someday I’d consider that climb something to crow about.
It’s odd to be back in the old haunts – not that the neighborhood is really the same. The windows of what had been corner grocery stores – and there were many then – are now covered with beautiful drapes pulled back to reveal chic tea shops or coffeehouses. The places where janitors and waitresses raised their families are now filled with 30-something techies who have lots of money and have raised rates to the point where no ordinary working stiff could possibly afford to live here. But many of the houses have the same bay windows, the J-Church streetcar still clangs by, and on a sunny day like today it still feels good to be here. I find myself looking carefully at the faces of old people walking by. Did I know them back in the day? Would they recognize the names of me or my parents or my sisters?
The shape of the hills is still in my bones. Walking the dog this morning past the house where I lived from the time I was three until I was 14, I was caught by the sight of nasturtiums growing in the garden. Could they be the great-great-great-great-great-great-great-grandchildren of those my Mom planted?
On this sunny morning, I see ghosts from my childhood. All those life loving people who are now dead and gone: My parents who had the wisdom to bring us to this place; Lois Kramer and her plaid wallpaper and placemats and infectious Irish laugh; Bill Bergeron and his cement mixer which he ran at 6AM one day making my normally cheerful dad yell; Doug Cline and his parrot Monty and priceless collections that the Smithsonian took when he died; Margaret dePatta and beautiful tiny home she designed and built with her Bauhaus artists eye; the Wertheimers who lost their baby to crib death; Rebecca White-Eagle who developed breasts too early; Leola King the Barbeque Queen and the husband who served her coffee in bed; my friend Pete’s Mom who worked as a waitress behind the counter at Woolworths; Dorothy T’s Mom who beat Dorothy with a belt; the crazy old skinny woman who lived two doors away and came and ironed for my Mom sometimes just because Mama felt sorry for her.
I am overwhelmed with gratitude and longing.
In the writer’s world there is thing called “process.” Everybody talks about it. Everybody tries to develop their own. There are conferences held, classes given. And, of course, there are books written about it. We are told that everybody needs a “process.” I know what they mean – you have to have a way to make yourself produce.
I’ve always been put off by that word. Seems to me that if you’ve got something to say, you should sit down and say it. If you don’t have something to say, you should be quiet. But I also know that it is way too easy to shut yourself up when you shouldn’t. And I also absolutely know that we all have stories to tell and wisdom to share and that these go along with a terrible human tendency to fill time with what is easy and avoid anything that is difficult.
I’ve heard that the folk singer Malvina Reynolds wrote a song every day. Her theory was that if you did that, sooner or later one of the songs would be pretty good. Using that theory, I tried writing a poem a day. I did that for about six months. That worked, after a fashion – one or two decent poems resulted. But I soon tired of it and went back to scrubbing the sink and reading library books and watching the birds at the bird feeder.
To be honest, finding my way through life itself has lacked “process.” I’ve never been very good at it. I’ve stumbled along, and been incredibly lucky most of the time, bumping into some pretty wonderful walls that turned into doors. But this life has seldom been intentional.
Don’t get me wrong – I actually decided to marry Charley. I actually decided to have each of my children. I actually decided to move from one town to another and from one job to another. But my decisions were so tied to a serendipitous goddess of sorts. This goddess laid juicy choices at my feet; I didn’t go out and create them. I never sat down and made a life plan. Self-help books put me to sleep.
Somewhere along the line, though, I did actually decide that I wanted to write. Or, to be precise, I figured out that I felt better when I wrote, and then had the happy discovery that people liked to read what I wrote. The problem with writing, however, is that you have to decide a lot of things. First, you have to take the time to write. It doesn’t just happen. So you have to decide to carve out the time from other things. Then, you have to decide on where to write (the table? the coffee shop? which coffee shop? The desk that I set up so hopefully and have never used?). You have to decide (and here’s the really hard part) what to write. I’m pretty good once I’ve decided on the “what.” But it is that beginning, that setting of the path, that vexes.
I am in a writer’s group. We’ve been meeting for many years. I love this group. They are smart, jolly, honest women. They’re people who take writing seriously. We meet every week, rotating as readers, each one of us sharing our writing about every six weeks. But here’s my ugly secret about this writer’s group: Aside from some good heart/soul/friendship energy, the biggest thing that I get from the group is a deadline. A big clunky in-my-face-I’d-better-get- it-together deadline. When it’s my turn to read, I’d better have something to read. So then I have to write. And as often as not, you’ll find me crazily writing on the morning of the group meeting, trying to create something worth presenting.
This keeps my toes to the fire. It isn’t a process, that’s for sure. But it’s a way to keep my fingers on the keyboard and the words coming out. Better than a kick in the head.
This post is taken from a column I wrote in 1996 for Ashland, Oregon's Lithiagraph newspaper.
I was raised to be a patriot, in the deepest sense of the term -- I was taught to love my country.
My father was a Russian immigrant, who came here with his parents when he was one year old. My mother, one of six children, also came from a Russian Jewish immigrant family. Both sets of grandparents held organized religion in contempt, so neither of my parents were raised in the Jewish faith. Nonetheless, they had a different kind of faith. They fervently believed that those who raised the food and tended the soil should own that soil and its harvest. They had faith in the glory of the working person. It was early in the last century, and all around them industrialism was rearing its mighty head, and factories and mills were filled with thousands of working men, women, and children. It seemed only logical that what held true for the tenders of the soil should also hold true for the workers in the factories.
They believed, then, that working people were heroes. They believed that the work done by honest labor was glorious. It was in this context that both my parents became communists in the 1930's. They truly believed that communism would help to make this country even greater.
In the 1940's my Daddy went to war. Serving on the front lines in France and Germany, as a member of the infantry, Daddy fought the hardest fight against fascism, leaving behind my mother and three little daughters. He didn't come home until I was almost four years old. Mama spent the war years helping to raise money for the war effort, and taking care of us girls as best she could.
When Daddy came home, it was to a country getting ready to launch a fierce anti-communist period which came to be known as "McCarthyism." He and Mom were about to be outsiders. I was always aware that we were of Jewish heritage, in a time of the Holocaust. I was also aware of their radicalism in a time when this wasn’t okay. As McCarthyism raised its ugly head, it would have been so easy for our parents to allow us to be afraid and ashamed. But it didn't happen that way. Not for us. My folks wouldn’t let it be that way.
Our parents taught us, every day, that the American people were good. That the American worker had built an endless array of wonders -- like the Golden Gate Bridge and the Washington Monument and the highway to our grandparents home, and on and on. They taught us that all the people of the world cared about their children and laughed and sang their own songs that were as fun for them as ours were for us. They sang us lullabies from many lands. They read us fables from all over the world. They gave us a context for hope. They knew to their toes that good would find a way.
When I was in the third grade, they took us by train to Washington, D.C.. All the way across this beautiful land, they pointed out how people lived, and what they had built. All the way they told us stories from history, including those about the slaughter of the Native Americans, right along with those about the bravery of the families who made that arduous, hopeful, trip out west. The contradictions weren't confusing -- they simply were the truth.
When we got to Washington, the cab driver insisted on driving us through a black slum neighborhood, and spouted racist untruths loudly. We were horrified. My parents made us listen. It was part of the truth of our country that racism existed, and that there were people who could look at such misery and not "get it" that it was wrong for human beings to have to live in that kind of poverty. Our parents wanted us to love our country, but they also wanted us to know what ailed it and what had to get fixed.
When we actually got in to see the Constitution and the Bill of Rights, my mother cried with joy. For sourvenirs of the trip, we reverently purchased copies of the Bill of Rights in the gift shop, printed on paper made to look like ancient parchment.
Oh yes. I love my country. I may rage at what ails it, but I celebrate what is truly great about it. I'm still a patriot in that way. Happy Fourth of July.
Working on the site. Spreading the word about the book, inch by inch. I've sold almost 50 copies! Tomorrow I drop off five copies at our local bookstore for them to, hopefully, sell. I'm learning how to do this self-publishing thing bit by bit. Hopeful!
After a lifetime of writing, at 70 I've finally published my first novel. This website, and this blog, is me trying to take myself seriously as a writer, and me trying to get people to read the book. The book is a love story -- about a couple, sure -- but also about love of place, and a group of women who changed each others' lives. It deserves to be read. With this blog, I'll let you know how the book is faring. I'll also let you know what I'm learning as a self-published author. And I'll probably also comment on the world every once in a while.