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To read my current
journal, please go to: windchime walker's
FRIDAY, FEBRUARY 25, 2000
Red letter day as I finally dare to take a bus after an almost two-year hiatus! Strange how I can seem fearless in so many ways, but the thought of using the wheelchair lift just about did me in. Not that I was nervous about feeling safe on it; more that I was uneasy "bothering" folks by taking extra time and space on San Francisco's crowded, rushed MUNI buses. Well, as so often happens, I had a perfectly wonderful experience.
Driver #2991, a graying African-American man, couldn't have been more patient and gracious. As though I were an honored guest in his home, this courtly gentleman talked me through the process inch-by-inch...and then celebrated when I shared that it was my first time on a bus in a couple of years. I'd imagined I would sit on my walker-seat as I was lifted, but found it worked fine standing and holding the handrails by the front door of the bus. It didn't even take much extra time. Then my concerns about taking up more than my "share" of space with the walker proved unfounded. A man in a wheelchair even managed to roll by me on his way disembarking.
Well, now I feel the city is again open to me anytime I feel like venturing out. No more having to wait for rides from friends, or worry about using up my precious disabled taxi script. The world's my oyster! So where will I go tomorrow...
How many times do we limit ourselves unnecessarily? Not just physically, but experientially, emotionally, intellectually, spiritually. Is it fear or pride or apathy or lack of vision and daring? Whatever the cause, the result is always the same: our lives are made smaller and our spirits cramped. As with this refusal to use the buses. I've always loved MUNI buses because it's the very best place to experience the rich diversity of people in this amazing city. I also like going places by myself because I'm more inclined to meet new people, some of whom might become dear and lasting friends (as has happened more than once).
I remember taking three buses each way to Golden Gate Park one sunny Sunday two years ago. At that time I was using windchime walker, but still able enough to fold and carry her on my arm as I climbed up the bus steps. Even then it was an effort, but often people offered to help. Gosh, now I'd put myself at great risk to fold her even for a minute! Anyway, that lovely day I sat on a park bench for an hour or so, enjoying the endless parade of runners, bikers, bladers, walkers, skate boarders. Families, lovers, hot shot teenagers, elderly folks, yuppies, the homeless, affluent middle-aged types, you name it. They were all out that sunny March day after the torrential El Niño winter rains had drenched our collective spirits. Everyone was smiling--many at me and windchime walker all colorful and decorated in her finest chimes and crystals! I've paid big bucks here in SF to see fabulous concerts, plays and such, but this day I remember as a highlight that cost me a grand total of 70 cents!
Oh, I'm SO glad I'm a
bus rider again!
SATURDAY, FEBRUARY 26, 2000
Whew! I must have been one tired puppy. Slept until noon today! Not just my usual waking/sleeping, either, but heavy dream-filled sleep. This is the part of my condition I'm apt to ignore--the fatigue factor. My dragging legs, sloppy feet, precarious balance and iffy hands are so in-my-face that I often think these positive manifestations of the MS are all I need to deal with. The hidden lack of stamina and energy can be easy to overlook...that is, until I've come to the end of my supply. And that's when I'm in danger of falling. The falls aren't too bad in and of themselves--maybe a gash here, a black eye there--but what can really try my spirit are the after-effects. Cracked ribs and such really deplete my enthusiasm and generally upbeat way of being in the world.
I was fortunate a couple
weeks ago. Nasty fall, yes--emergency room supergluing of the
cut above my eye and a humdinger of a black (actually purple)
eye--but no lasting painful injuries. Also the grace of having
M.R. and E.S. here in the garden to help me tend to the gash and
then accompany me to the emergency room. But, protected as I felt
by all the loving people and good medical care, I'd rather not
push that envelope again, thanks! So today, instead of trying
out my new-found bus wheelchair lift skills, I think I'll cuddle
up with a good book (Midnight in the Garden of Good and Evil),
a hot cup of tea (Bengal Spice) and soft jazz on the radio (San
Mateo's KCSM). Tonight's date to share middle eastern food and
a video at L.A. and P.A.'s will be very low-key, and then I'll
be rested for tomorrow's marathon of activities!
SUNDAY, FEBRUARY 27, 2000
What a gloriously demanding day! Two "gigs", the first with my Lesbian/Gay Chorus of San Francisco from 8:15 AM-1:00 PM, the second with my monthly women's circle from 1:30 PM-8:00 PM. Whew! Almost cancelled out of my afternoon engagement, but an Odwalla Super Protein juice and four breadsticks pumped me up enough to keep going. Glad I did. The women in this group are so lifegiving, each with unique stories to tell and wonderful listening ears with which to hear one another. B.D. who'd just returned yesterday from a six week trip to India on her own. D.W. giving us copies of her newly published first book of poetry (at age 71!). J.S.--at whose bright and beautiful apartment we met--facilitating meditation, music-making and a sweet "tapping" form of body work we each found rich and nurturing to give and receive. D.T., J.S.'s roommate, sharing stories of her '60s experiences as a Peace Corps volunteer in Afganistan. E.H., a homeopath, and her plans to move to a small island off the coast of Maine. H.C. and the challenging joys of balancing her needs for solitude with her deep love of her partner, with whom she now lives. All this was followed by a delicious Chinese dinner together at one of SF's finest reasonably priced restaurants just blocks from J.S. and D.T.'s apartment. Tiring, yes. Worth it, definitely!
The morning with my chorus offered a hodge-podge of sensations--laughter, sadness, the joy of singing, a strong sense of community, wonderful silliness, and an opportunity to get ever more comfortable with my body and how it works.
The Widow Norton's Annual Tribute to Emperor Joshua Norton at Colma Cemetery is an annual icon in the SF Gay/Les/Bi/Trans community calendar. Another of those "only in San Francisco" events! Drag queens (one ruining her toe shoes dancing on a terribly bumpy road), cemetery officials putting on a brunch and hovering to help, the SF Lesbian & Gay Freedom Marching Band, Tom Ammiano (President of SF's Board of Supervisors), our chorus, the Vestal Virgins of SF, old and new Empresses and Emperors of the Imperial Court...all presided over by the Widow Norton Empress Jose Norton I, (Jose Sarria, the grandmother/father of the gay movement in SF since the '40s). My only sadness was in hearing from a dear older gay man I've seen at these functions for years that he is suffering from three terminal illnesses and likely has very little time left. Yet his smile and presence were radiant as the sun that finally pushed the rain aside when we sang "Let the sunshine in" (from "The Age of Aquarius").
I was so slow pushing
windchime walker over that bumpy road to join the chorus singing--and
again returning to my seat after we'd completed our three songs--that
any discomfort I might have about "standing out" in
a crowd certainly had a chance to be triggered. There I was in
front of a couple hundred folks blocking their view of the "stage".
But I kept going at my own pace, by myself, somehow knowing it
just didn't matter. That is a true sign of growth for me. I guess
being differently-abled means getting used to the idea of being
MONDAY, FEBRUARY 28, 2000
The Airborne Express delivery just came at 3 PM today. I feel as though I've been holding my breath since 8:30 AM! On the first delivery attempt last Thursday, s/he'd mistakenly gone to my next door neighbor's apartment--thank goddess, it was someone I knew--and left the attempted delivery notice in S.K.'s mailbox (with my name misspelled as well!).Since then I've been anxious about receiving these airline tickets at all. My tickets to go back home for a few days next week and help celebrate E.D.'s 70th birthday...that sweet husband of mine who stays home in Detroit (by choice) while I migrate out here during the winter. Believe me, that man deserves to be celebrated!
My anxiety was heightened by the fact that if the delivery--that needed my signature--was not successful today, the airline tickets would automatically be returned to the online discount travel site from whom I'd bought them. Then what? Timing was going to be a factor. And my secondary nerves came from knowing how long it takes me to traverse the garden path to open the gate...and how short a time most delivery persons like to wait outside said gate before assuming no one is home. So I called Airborne Express this morning and asked them to tell the delivery person that I was disabled and would be slow opening the gate after s/he buzzed. Then I left a note on the door by the buzzer saying the same thing. The delivery man admitted it was a good thing I posted that note. Whew!
The time and effort it
takes getting from point A to point B is an unexpected zinger
in being mobility impaired. When I was able-bodied it never occurred
to me that simple things like getting to the door in time, or
crossing the street before the light turned, or walking on and
off stage could be such a BIG DEAL. Now my plans to do anything--even
go to the toilet--have to take into account how long it will take
me and how much energy will be needed to get there. For a naturally
spontaneous sort like me, this necessarily forward-thinking way
of being in the world has been a challenge. But as Jung always
said, the goal of the second half of life is to strengthen the
undeveloped side of one's personality. Becoming disabled is a
perfect Jungian self-help tool!
TUESDAY, FEBRUARY 29, 2000
The older I get, the less concerned I am with questions of "what?", "why?", "where?", even "how?"...and the more things hinge on "when?". Timing is everything. I can have a sense of what might be coming next, but if I try to force it to come when I want rather than when it wants, things go haywire.
Today was a perfect example. D.W. and I had a lunch date. The closer it came to our appointed time to meet, the sicker I felt. Headachy, body achy, just feeling pretty miserable. Like a bug coming on. So I called D.W. and regretfully cancelled. Then decided maybe some sun--finally a sunny February day!--would help. I went outside and sat on the bench in my garden. Luscious to feel warm sun after all this rain. As I sat there, my eyes were drawn to our neighbor's fern tree, lime-green branches finally unfurling in the warmth. I've watched this tree and its knobby-fisted new growth for weeks now. Today, the words rose unbidden in my mind, "tightly-held spiral fists". I recognized the contractions of a poem coming to birth. I came inside, sat at the computer and wrote a pantoum poem starting with the line, "Do I stand as the fern tree stands?" There was a flow to the process, as though words emerged fully formed from the womb of my experience. How strong is the force to create! Not even lunch plans can get in its way.
Do I stand as the fern tree stands?
Tightly-held spiral fists at my sides
Struggling against winter winds and rain
Nature's call to unfurl reluctantly skyward
Tightly-held spiral fists at my sides
Something unbidden pries knobby fingers open
Nature's call to unfurl reluctantly skyward
I resist the pull inch by painful inch
Something unbidden pries knobby fingers open
Arms stretch wings of fuzzy green branches
I resist the pull inch by painful inch
The pull to grow, to fly
Arms stretch wings of fuzzy green branches
Struggling against winter winds and rain
The pull to grow, to fly
Do I stand as the fern tree stands?
WEDNESDAY, MARCH 1, 2000
I wonder what it is about working in the Castro at Metropolitan Community Church's Simply Supper that feels so right to me. That hour is a highlight of my week. And now that I've been there a couple of months, the regulars are like friends to me. I care about them. For instance when P. didn't show up today carrying his rat, EJ, in the wire cage, I got concerned. Is he all right? Such a gentle-spirited man. And I know he's been fighting a cold in all this rain. When you live out on the streets, sleeping in doorways, how can you stay dry enough to get well? Today was the first of the month so our numbers were down--the day General Assistance checks are given out--but that's never kept P. away before. So where was he? I hope he's all right.
My husband says, "Now stop wearing your heart on your sleeve!" But my job encourages my connecting with the guests. I sit upstairs at the dining room door, taking the tickets S.W. and J. give out at the front door downstairs. I'm expected to keep track of the numbers of guests, making sure each person will have a chair to sit in. And then just schmooze. Perfect job for me!
We're small as soup kitchens go--48 chairs and usually 70-90 guests served in the hour between 4-5 PM Wednesdays and Fridays (S.W. and I only work Wednesdays). But we're known for having the best meals in town. I mean how many free dinners serve three different bowls of pasta with a choice of spicy or mild Italian sausage or tofu for vegetarians! This was the entree today plus the usual salad, vegetable, fruit, bread, dessert, juice, water and coffee. The desserts are donated by one of SF's favorite restaurants, Just Desserts, with breads from another SF best, the Noe Valley Bakery. The folks who organize this program cook, set tables, serve, wash up, give tickets, are kind, respectful and full of heart. No wonder G. said today that Simply Supper is the best of it's kind in the city!
My idea of volunteer work has changed so much over the past decades. I remember early on feeling pretty self-satisfied when I was "helping others". Yuck! Now I don't even look at my time spent at Simply Supper as volunteer anything. I am doing exactly what I want to be doing, spending an hour a week with people I like and respect. The folks in that line are truly real, and that counts for a lot. It is probably the most human of all environments in our culture today. Imagine being around people in whom there is little arrogance and greed. People who are looking to survive more than succeed. Very different energy from the norm. Maybe some are high on booze or drugs, but if so, it's right out there. It's refreshing to be in a group of people who just are who they are, with no attempts to be anything else.
I suspect that every Wednesday
I come away from MCC in the Castro better fed than any of our
THURSDAY, MARCH 2, 2000
The sound of rain pattering on my skylights during the night. I remember how enthralled I was with that sound when I first heard it in January. Well, after 21 days of rain in February, my feelings have changed a bit. Still sounds sweet, just not a sound I'm particularly fond of hearing!
Woke early to a glum gray day. Or was it I who was glum and gray? Nursing a cold and not feeling very well, I had trouble getting warm even with the heater kicked up full blast. So I cuddled up on the couch with my afghan and a cuppa hot ginger tea and almost finished reading Midnight in the Garden of Good and Evil. It certainly is, as they say, a good read. But it wasn't the book that made me feel better; it was two sources of energy outside of myself.
The first was my daily phone conversation with E.D., my sweetie. As he dithered on about his day, how he'd seen a "nice woman" at the clinic, a book he's reading on South Africa by a friend of ours, an invitation we received to a neighbor's engagement party, how he was too tired from tennis last night to do his sit-ups this morning, what he'd had for lunch, how he was going to call his friend J.L. to go out for dinner...I just started feeling better. Even the sore rib (another little fall today) subsided in intensity. Just as L.B. who worked with E.D. at Rehab Center all those years ago always said, "That man is a healer!" It's not so much what he does or doesn't do; it's his presence. Well, he did some healing today and I'm grateful. Whether I'm living in the same house with him in Detroit or by myself out here in SF, I feel so connected to E.D. Of course, a 33 year marriage has power of its own.
The second healer of the day was the sun! She finally started peeking her head out about 2 PM, transforming the garden into an inviting place to sit. So I bundled up and went outside. I sat on the bench for maybe a half hour. Plenty of time to enjoy the breeze tossing white plum blossoms at my feet, a magnolia petal dropping in the strawberry bed that I weeded yesterday, two pigeons flying overhead, flies buzzing around the lavender plant, a tightly furled calla lily towering above its brown-edged sister bent over with age, and children's playground screams from the school nearby.
Life is sweet. Even with
FRIDAY, MARCH 3, 2000
I guess maturity is being comfortable with dichotomies. This day certainly was a perfect example. Life and death. In particular, our power to choose between the two.
Helen Redman has obviously chosen life in its most vibrant, expanded form. D.W. and I went to her slide presentation at the University of San Francisco (USF) tonight based on her artistic body of work, "Birthing the Crone". Not only did Helen show slides of her own paintings, but a richly diverse selection of other artists' and photographers' depictions of the crone, all of which celebrated this final age of womanhood. Her energy, zest, humor and commitment were palpable! And the audience was filled with wonderfully creative women of age and beauty. Helen's response to the bodily losses associated with aging stand in stark contrast to my acquaintance/friend K.S.
Yesterday, K.S. succeeded in her second attempt to kill herself by overdosing on pills. She did so with the knowledge and support of those who loved her. K.S. was 35 years old, and had suffered with a virulent form of MS for the past five years. She no longer wanted to live in pain and increasing dependence on others.
As I was outside weeding the strawberry patch, I thought, "How can anyone choose to give all this up?" Even weeds are beautiful. It's hard for me to understand K.S.'s willingness to turn her back on sunlight filtering through a fern tree, black crows standing stark against blue skies, magnolia blossoms opening pink juicy mouths, a white butterfly poised motionless on a lavender plant.
May I never lose sight
of life's grace and beauty. May I not only accept but celebrate
the inevitable changes in my body.
SATURDAY, MARCH 4, 2000
Must be some serious water
energy around here today. Like the sudden downpour of rain this
afternoon and tonight, my cold has unexpectedly turned liquid.
Practically a one-box-of-tissue day already. Amazing how an active
cold can sap one's energy. After making a bowl of soup for supper,
I tried to situate myself on the couch to read. Couldn't even
get my legs up on the cushions, much less stretch them out. Time
to take this noodle-body to bed!
SUNDAY, MARCH 5, 2000
Gray overcast skies. Perfect day to stay inside and nurse a cold. An engaging book (Audrey Hepburn's Neck by Alan Brown), hot tea (Bengal Spice), mellow jazz (Larry Nozero's CD, "Warm"), my cozy afghan pulled around me and a box of tissues at my side. What more could one ask? Actually, I'd ask for my sweetie to be here with me. Funny how vulnerable one feels living alone while sick. Last night, especially, I really missed E.D.'s comforting presence.
This is such an unexpected way I've chosen to live: winter months on my own in San Francisco, and the rest of the year at home with E.D. in Detroit. If someone had told me even six years ago that I'd be living like this, I'd have laughed out loud. Impossible! And even more impossible that my husband and I would still be so close. Just goes to show one doesn't have a clue what's next.
Maybe that's part of my disappointment over K.S.'s decision to end her life at such a young age. How could she know what would come next? Probably because her MS had taken such a nasty turn, she imagined things would only get worse. And maybe they would have. But maybe not. We just don't know the future. It sounds so trite to write that, but it's true.
Here I am, 12 years after the fall that signaled the onset of MS. And, yes, the MS has certainly progressed. I've gone from being a runner and dancer to being a disabled person who can't take a step without the aid of a walker, cane or sturdy wall. Yet, look at my life! More options than ever. More friends. More creative opportunities. Living exactly as I choose to live.
I sometimes wonder if
the diminishment of my body has triggered an increase in the power
of my life force. And why might that be true for some and seemingly
not for others?
MONDAY, MARCH 6, 2000
I sit in my night-darkened cottage, single candle flickering, Japanese Cypress incense burning, one of San Francisco's public radio stations on the radio. Sweet Honey in the Rock sing of poverty, El Salvador, injustice. Other groups and artists from the '50s to the present sing of love, peace, bombs, African blues, money, tears.
The music calls forth memories so vivid I'm there.
At my first demonstration outside the Federal Building in the mid '80s. Nicaragua. I'm late after trying to find parking at noon in downtown Detroit. No familiar faces among this circle of perfectly choreographed protesters. I wonder where I fit in.
J.P. comes and sits beside me, midwife of the life I've crafted here in San Francisco. J.P. dead of AIDS at 35 in November 1994. J.P. whom I met on a train outside Albuquerque in April 1993. His legacy being this city, friends like S.W., P.O., J.G., and the Lesbian/Gay Chorus of SF. J.P.'s bright smile and sweet clear tenor voice singing, "I will survive!"
Sr. M-P makes her appearance. Sr. M-P, facilitator of the personal growth system I used in the '80s when midlife hit in full force. My introduction to journaling. Sr. M-P, accepting of everything but self-deception.
I'm dancing, arms around a faceless boy, bouncing up and down like we had a shared palsy. I forget what we called the dance, but I remember it was meant to be silly. And it was. The now-famous 1950s. A high school sock hop in the gym with pony-tails and flat-tops bobbing in perfect sync. A teenagerâs life as roller coaster.
I guess this is what music
therapy is all about!!
TUESDAY, MARCH 7, 2000
It'll be sweet indeed to be home in Detroit with my E.D. tomorrow night! Let's see, it's been about 10 weeks since he put me on that train going west early December 25, 1999. And now I'm returning by air for a few days to help celebrate his 70th birthday. Have decided to travel light--the 30 minute plane connection in St. Louis makes me a bit uneasy--so no laptop this time. Just an overnight bag and a good book.
So many birthdays together, starting with his 36th in 1966. I remember E.D. coming to my studio apartment for a day-after-birthday dinner. My grad school digs for which I paid an "outrageous" amount per month ($125 of my $180 monthly stipend!). Salvation Army bed-pretending-to-be-couch with forest green bolster cushions and corduroy spread, black metal TV tray as end table, pole lamp with 3 lights, small black-and-white-TV, gold-toned Woolworth's "painting" of an abstract skyline on the wall, big brown plastic radio on an Indian-bedspread-covered footlocker by the window, and a card table with two wooden folding chairs in my dining L.
I cooked him my only meal--broiled lobster tails with melted butter for dipping, frozen french fries (cooked, of course!), and coleslaw made from my Mom's Hellman's mayo and white vinegar recipe. For dessert I made meringues, filled them with vanilla ice cream covered with frozen strawberries (thawed), a squirt of canned whipped cream, topped by a maraschino cherry. Well, the lobster tails were dry and stringy, french fries a bit burnt, coleslaw fine, and the meringue suitable for holding back a shelf of books! But he married me anyway. Never was much of a cook!
This birthday our wonderful neighbors, the B.'s and M.'s, are putting on a dinner party to celebrate. Like E.D.'s 50th and 60th in a way. But those years I put on the parties--always as a surprise to E.D.--of course, never really taking into account that it was not E.D. who likes surprises, but me! I almost did it again when I was going to "surprise" him with this trip home. Fortunately, one sleepless night it came to me that E.D. doesn't like surprises because he likes to anticipate things. So I told him of my plans, and we've been looking forward to it together ever since. Maybe that's my best present to him...finally catching on to what that dear man actually prefers!
So this'll be my last
entry until Sunday, March 12. Have a good weekend, as will I!
MONDAY, MARCH 13, 2000
Yesterday I returned to San Francisco after spending three days and four nights with my sweetie in Detroit. What a surprising time! I did not expect to be so deeply happy being back in my own home with my own husband. I couldn't get enough of just looking at him, hearing his voice, listening to him play the piano, feeling his touch. Every moment so precious. It was VERY hard to leave him yesterday morning, even knowing my winter migration to SF will be completed in only six more weeks.
Our house as well. It was healing and empowering to be in a place surrounded by evidence of our life together downstairs, and my own life upstairs.
Sitting in the candle-lit upstairs front room the first night, pulling my space around me like a child's "blankey". The doll corner I set up after we dismantled our childhood home last summer. The sacred pipe bought at a Detroit Pow Wow attended with refugees from the shelter where S. and I used to facilitate weekly tell-your-story-in-art sessions. My sculpture of the clay-and-driftwood woman made soon after getting the diagnosis of MS. The varnished wood silhouette of my head at age 10 crafted by Dad and placed between my two sisters' silhouettes on the transom of our sailboat Harem. The basket of Sacred Stones created after my solitary train journey to the land of the Hopi and Navaho the spring of 1994. The pile of Great Lakes stones by the door, remnants of thousands gathered, painted and sold at psychic fairs and holistic conferences in the mid-90s. Shelves of journals detailing my journey since things went into high gear in 1984. The indefinable energy of all the women (and a couple men) who have shared stories and ritual in this upstairs room. The pain-filled weeks I lived alone and made art up here during the Gulf War, candles burning in the sand of my triple-bowled raku pot.
It felt like a journey to a sacred site. And it was.
Added to the sense of pilgrimage was an unexpected choice I made during my time home. I cut my hair. I guess for most people cutting their hair is no big deal, but for me? Well, the last time I'd had my hair cut was March 1991 immediately after the Gulf War. It had an air of finality, that last haircut. I then started letting it grow and grow and grow, until it reached below my waist. For 9 years my hair has carried deep meaning for me. My sense of inner power seemed to be held in its braided weight. Occasionally over the years I'd have nightmares about my hair being cut and my power taken away. I didn't know if I'd ever cut it again.
But lately all this hair had gotten to be a drag. My less-than-able hands could no longer braid or even pull its mass into a rubber band. This meant I was dependent on others to care for my hair. Believe me, during this rainy San Francisco winter, it was a real drag to have to get a cab, take a bus, or ask a friend to drive me to the only beautician I'd found whose braids stayed in long enough to make the trip and $$ worthwhile. Besides, years of tight braiding had begun to widen my part and hairline significantly! Definitely time for a change.
I had it cut in a longish buzz cut with one tiny long braid over my shoulder as a souvenir. And now my hair is almost totally white. T., who's washed and braided my hair for years, proceeded as an unselfconscious priestess, even giving me the long braid as ritual object when she was done.
So now I'm free. Free of unnecessary dependence on others. Free of the weight of all that hair. Free of at least one source of vanity (my-hair's-longer-than-your-hair kind of thing). Free to rub my head anytime I please (it feels SO good!). Free of a lot of baggage I've carried for the past 9 years.
My sense of power is no longer tied to anything material or outside of my inner self. I feel ready for a new cycle to unfold. And even San Francisco seems to have entered a new season, with spring sun carpeting the lush garden outside my window.
Isn't it odd how one can
make a plan for one reason and the Universe uses it for quite
another? Thus March 9 became a happy birthing-day celebration
for both E.D. and for me.
TUESDAY, MARCH 14, 2000
There is such an energy shift happening. It shows in the bright warm sunny days, in people's smiles and openness, in my own attitudes and feelings. A week ago it was still raining, I was sick, everything felt very very heavy. And now the world is light, bright and full of adventure.
My friend D.F. arrived from Detroit today, a friend whom I first met in 1972 when she was 12. She and C.S. were the advance scouts in our neighborhood, checking out these new folks on the block (E.D. and me). Within weeks we had become an unofficial youth center, and stayed so until the mid-80s when the final gang of kids went off to college. For a couple who loved children but never managed to have any of our own, this connection with the neighborhood kids--upwards of 150 over the years--fed and delighted us. When children give you their friendship it is privilege, for they see into the heart.
D.F. and I used this glorious spring day to the hilt. She wheeled me in my rainbow wheelchair down to the BART station, where the elevator was unexpectedly on the fritz. Without missing a beat, we hailed a cab to take us to the Ferry Building, boarded the Sausalito ferry and enjoyed the sun sparkling on wind-whipped waves, foggy fingers caressing the Golden Gate Bridge, and the most beautiful city in the world spread out behind us (sure I'm prejudiced!). A seafood dunch (dinner/lunch) on the porch of a bay-front restaurant, earrings (for me) and an artist-made clock (for D.F.) from a surprisingly untouristy Sausalito craft store, ice cream on the wharf, and a pink sunset-drenched ferry ride back to SF. As a cap to this perfect day, on the #14 bus going home, we met and talked with V., one of SF's wise gentle-spirited men, who spoke of electric-run buses, compassion for the homeless, and how good it is when folks "agree to disagree" (after a not-so-gentle-spirited man made some cruel comments about persons of the street).
Oh, life is so very good.
WEDNESDAY, MARCH 15, 2000
This was a day packed full of activities, from time spent with my friends D.F. and D.W. at Twin Peaks, Ocean Beach, Dolores Park Cafe and ACT Theater's play "2 Pianos, 4 Hands", to my weekly hour at MCC's Simply Supper. So much natural beauty, sensate enjoyment, creative excellence...but what will stay with me are the people.
E. the plumber this morning trying to find the tiny diamond stud earring I had dropped down the bathroom drain yesterday. After 20 minutes of utter silence, I heard, "Got the little bastard out!" Then his words, "A lot of plumbing is persistence. If it doesn't work and you say to yourself it'll never work, well, it probably won't. But if you keep saying this is going to work, then it usually does." The Tao of Plumbing.
The man at Simply Supper--I don't know his name, though he's a regular--with a guitar slung over his shoulder. When I asked if he'd play something for us, he replied, "I'll see." As he prepared to leave he knelt down and said, "I don't want to play for everyone, but I'll play this one song for you." What a gifted musician! He played with ease, skill, and obvious professionalism. When I commented on his gift, he smiled and said softly, "Well, I've been doing it for 33 years."
As we turned the corner of Geary and Mason after the play tonight, there was an older woman in a wheelchair holding out a cup for money. Most people walked by without seeming to notice her. What I noticed was her feet, one in a running shoe, the other in a slipper--and no socks on this rather cool night. As usual I introduced myself and asked her name. I gave her a dollar and we got to talking. When I mentioned my concern about her not wearing socks, R. admitted she can't reach down to put them on. She asked why I use the walker. I told her, MS. I then asked why she was in the wheelchair. A pinched nerve from a large stomach tumor. She raised her jacket so I could see its outline. And HIV+. "Don't give up!", she said to me with a smile. "Take care of yourself. Don't overdo." Then, "You know what bothers me the most? Those pitying looks. You know the ones." She continued, "I grew up with a cousin in a wheelchair and we never thought she was any different from us. Why don't people see us like that?" She finished with, "Stay positive, Patricia. That's the key."
The people--more than
the clear blue skies, bright warm sun, wildflowers on green velvet
hills, aqua ocean and dazzling white surf, tasty avocado veggie
sandwiches, engaging acting and music--it is definitely the people
I will remember from this day.
THURSDAY, MARCH 16, 2000
I feel so disconnected with my web host down. Not able to access my site. Not able to update the Journal page. How much this all means to me! And not just me, but anyone who tries to go to my site gets the "Connection Timed Out" message. Why can't they say, "Sorry, this web host server is temporarily down." Anyway, if it isn't up by tomorrow I'm going to see about changing from NT to Unix. Apparently it's the NT server that's having problems. Maybe it's time to change anyway. Unfortunately, when they originally asked me if I wanted Unix or NT I didn't know what they were talking about so I said NT because I'd at least heard of it. When will I learn to ask for explanations when I don't understand something? Maybe now.
Am I surprised at how much the web site means to me? In a way. But when I ask myself why I put it up, I guess its meaning becomes clear. For me, living through anything makes sense if I can somehow share the learnings or experience with others, particularly in a creative way. For 20 years visual and performance art satisfied this need to "universalize the personal." For awhile it was word and image, what I called Word Art. Other times, words alone were enough...in newspaper columns, personal essays, poetry, fables, storytelling. Each medium, though, had a limited audience. Sometimes I was the only member of the audience, kind of like one hand clapping.
Soon after discovering the world of computers, I knew this was a medium that could best express what I was learning from my unexpected teacher, MS. I especially wanted to share with others how to decorate walkers and canes, the physical manifestation of my journey into becoming "creatively disabled." The web world, I discovered, is ever changeable, organic, and capable of reaching persons around the world, especially differently abled folks who might now be homebound. It felt like a perfect fit! Within six months of walking into my first Computers Made Simple class, I had designed and put up Windchime Walker's Home Page. Since that day a little over a year ago, this web world has broadened my horizons and helped me find meaning in the day-to-day adventure of living with a disabling condition.
So let's get my web site
up and running again tomorrow. OK, webhost friends?
FRIDAY, MARCH 17, 2000
My friend D.W.'s 72nd birthday today. And another--7th in a row!--sunny warm day. We took a road trip 45 miles south along the coastal Hwy 1, down to Pescadero (20 minutes below Half Moon Bay). I drove D.W.'s car while she served as navigator.
What beauty! Hills so alluring I longed to run my hand over their fuzzy green heads. The ocean with endless white waves crashing against craggy cliffs and sandy beaches. Fields of orange California poppies mixed with the clover-leaved yellow flower natives call a weed and I call lovely. The sky so blue it hurt your eyes to look at it. Tightly curving sections of road that suddenly seemed to thrust you straight over the cliffs into the sea. Cypress, junipers, eucalyptus and other trees common to Northern California, this Mediterranean-like land.
We took a couple of the highway turnouts, stopped the car and just let the ocean's power wash over us. So beyond our human capacity to control! How deeply satisfying in that way. During one stop, we got out of the car and were nearly blown over by the strongly gusting winds off the water. For an air sign (Gemini) like me, it was invigorating and healing. Brought back memories of standing on the bow of our sailboat as a child, letting the winds blow through my cotton shorts and Mexican halter tops.
Living in a city, one can begin to imagine that we humans control most everything with our dot.coms, stock markets and interest rates. But once outside the city--beside open ocean waters, rocky cliffs, lush green hills and fields--it becomes so clear where we lie in the scheme of things. One among many, no more important than any other species. As D.W. says, we need to get out of the city in order to get our bearings.
Well, in this day filled
with nature's wonder, there was a human in a city someplace (Florida,
I think) whose wizardry got my web site up and running again.
A special thank you to T.D., the webhost support person who transferred
my site from NT to Unix. Yea Unix...whatever that means!
SATURDAY, MARCH 18, 2000
A lovely lazy morning. 11 AM and I'm still in my nightgown and robe. Another sunny day, warmer than ever. Sitting in the garden, I found myself moving from a sunny seat to one in the shade...and this before 11 AM! My windows and door are full open, allowing flying insects to come and go as they please. San Franciscans don't seem to be bothered about needing screens like midwesterners. Live and let live, I guess. And no mosquitoes--that I've seen anyway--certainly makes a difference!
I'm in the middle of reading
Ken Wilber's book, Grace and Grit, the story of his and
his wife's five years together after she was first diagnosed with
breast cancer. Its subtitle "Spirituality and Healing in
the Life and Death of Treya Killam Wilber" gives the focus.
It is an account of both their journeys, with Ken's narratives
and philosophical utterances interspersed with Treya's journal
entries. Compelling stuff. Particularly compelling is the transformation
Treya underwent personally and spiritually as the disease battered
her with recurrence after recurrence. Instead of staying in the
stuck place of letting the cancer determine her life, she managed
to move to a place of almost peaceful detachment even as she became
more involved in the world.
She was 41 when she died.
How to live within a body
that challenges all your assumptions of what it means to "have
a good life"? It seems to me that Treya struggled most mightily
with the task of finding meaning in her life as it was, not as
she wished it were. Especially, how to contribute something of
value before she left this life. She did contribute...by co-founding
the Cancer Support Community, facilitating groups for women with
cancer, and by artistic outpourings in stained glass, drawings
and words. But, to me, her most significant contribution was simply
the way she lived her life, grappling on deep levels with the
whole mix of what it means to be human. More and more, my "philosophy
of life" seems to have only one tenet: the need to become
fully human. Not good, or kind, or productive, or peace-filled,
or even enlightened ...simply to be human. Some task! Well, Treya
lived that philosophy in every fiber of her being. It's always
encouraging to find someone who has dared to travel that path
and come out on the other side.
SUNDAY, MARCH 19, 2000
I remember Sr. Calista having us pray for "pagan babies" back in St. James catechism class in the '40s. Who'd a thunk I'd be dancing with just such pagan babies in San Francisco's Golden Gate Park on a sunny Spring Equinox more than 50 years later!
My friends K.S., D.W. and I joined the Reclaiming Wiccan community at their Equinox celebration this noon in the Beltane Meadow. Reclaiming's ritual honors the children, who represent the newness of spring in our world. From the infant nursing at her mother's breast to youngsters of elementary school age, perhaps 20 children sat at the center of the circle. Priestesses called in the four directions, began chants, told the story of Demeter and Persephone, invited us to make a wish and then sent the children off on a colored egg hunt. This was obviously the highlight for the kids! They were instructed to gather eggs hidden among the trees at the edge of the grove, choose their favorite to keep, and then give one egg to each person in the circle. We were assured that when we received an egg, our wish would come true.
She changes everything She touches,
And everything She touches, changes.
The chanting began. I was in my rainbow decorated wheelchair at the edge of the circle. As the circle dancing started, a priestess in a "green man" hat pushed me into the center of the circle and danced my chair around, as we continued chanting. Bright smiling faces danced by. Tall eucalyptus trees held us safe. Blue skies and shining sun graced our gathering. Excited children ran around searching for eggs. Sweet place to be...especially when the little ones started returning with their baskets full of eggs. My priestess friend gave me a lovely purple egg, which I put in my jacket pocket for safe keeping.
I am now convinced that
my wish will come true. As I got out of K.S.'s car coming home,
I noticed my side felt wet. When I looked down, my lovely purple
jacket--luckily cotton--now had a yolk-covered pocket! My egg
was so "new" that it hadn't even been hardboiled. Now
if that isn't a sign of spring, I don't know what is!
MONDAY, MARCH 20, 2000
How close I feel to Treya Killam Wilber. It always surprises me when a book touches so deeply that its reality becomes my own. I know Ken Wilber is best known for his countless books on transpersonal psychology, a field of study in which he is considered an expert, but for me, Grace and Grit will always be his masterpiece. Letting us inside the world inhabited by Treya during her life and death with cancer is a priceless gift. And letting us inside his life as her support person, with its messy loose ends and vulnerability, is definitely part of the gift. Honest, searing, radiant, disturbing, spiritual, universal yet so deeply personal. A story that transforms even as it saddens.
I spent this sunny day in the garden, reading and reading and reading. After the sun set and the night air grew chill, I continued reading inside, stretched out on the couch with an afghan over my legs for warmth. I read in silence, as a sign of respect to Treya. No music to soften the blow of her death.
So much went through my heart and mind as I read. How strange that what we most struggle with in our lives is often the door to its meaning. That having a disease like cancer (or a condition like MS) is not our "choice", as the New Agers assert, rather how we respond is the choice we're given. And that choice, while certainly involving many decisions regarding treatments and such, is in essence a spiritual one.
Treya was a fighter for life even as she accepted life as it is. As she said, she lived with "passionate equanimity". What a paradox! Yet in her, action and acceptance came to exist in perfect harmony. But not without struggle. And it was this struggle that made her story so real and at the same time, enlightening. Treya stared death in the face for five years, all the while growing in joy and wisdom.Her passing was as she wanted it to be, at home surrounded by those she loved, especially her dear husband, Ken.
This book helps me see
that death is not the enemy; our fear of death is. Death, as Treya
experienced it, is the culmination of life, the final grace. And
grit? That is what we need to live more than to die!
TUESDAY, MARCH 21, 2000
Spirituality seems to be swirling around me of late. Finishing Treya and Ken Wilber's story in Grace and Grit yesterday. Andrew Harvey's talk and signing of his latest book, The Direct Path, at Stacey's Bookstore downtown today. Oddly enough, Andrew even mentioned Ken Wilber in his talk. They are both published by Shambhala Press. My Michigan friend P.K. introduced me to the Wilber book and sent me back to San Francisco last week with her copy. Then D.W. invited me to today's book signing by her dear friend, Andrew. Friends walking beside me on the path saying "Look over there. This might interest you." As though my spiritual life wanted a kick in the pants. As though this new cycle I started with my haircut on March 9 is primarily a spiritual one. Well, of course it is. Isn't everything?
Strange to remember how conscious a seeker I was back when I first awakened to this thing called spirituality. Reading everything I could get my hands on. Meditating hours every day. Following persons who set themselves up as spiritual/religious leaders. What followed was ecstasy--a real spiritual high--and an unimagined sense of community and shared purpose. And later the inevitable disillusionment and feelings of having been had. Then disengagement from gurus/systems. The loneliness of going it alone.
At what point did I become comfortable following my own path? When did I come to this experiential knowing that all is one and I am part of the whole? When did I stop searching and let myself be found?
My spiritual life now
is no longer something I think much about. It just is. Meditative
energy flows through me without conscious intent. I hear a bird
singing, or look up through magnolia flowers to the blue sky overhead,
or speak to a new friend on the street (like J. today), or sit
in the candle-lit dark of my cottage, or hear my friend D.W. read
her poetry to a group, or eat a piece of fresh pizza, or get teary-eyed
over S.S.'s oil pastel drawings, or see the raccoon's face at
my french doors, or crawl into bed after a long day. Each moment
offers a sense of the sacred. Each encounter shows another face
of the divine. Life is too precious to chop up into arbitrary
sections. It is a whole and deserves to experienced in its totality.
Body. Emotions. Mind. Spirit. All one, like a sneeze.
WEDNESDAY, MARCH 22, 2000
Lunch today at my friend, L.C.'s, in West Portal. Tomorrow is the third anniversary of our meeting. In 1997, L.C. was standing in front of me in the long line of folks waiting to attend San Francisco's first Commitment Ceremony for gay and straight domestic partners. That day, 200 couples were "married" by Mayor Willie Brown and members of the Board of Supervisors. I'd come with my friend, S.W., who was singing at the celebration. L.C. and I spent the hour in line discovering one another's stories. His included coming to the USA from his native Puerto Rico, and then settling in SF in the 1950s. As a gay man, he felt at home in this city in ways he had never felt at home before. We found we shared a Masters in Social Work, with L.C. now retired from teaching social work at UC Berkeley. That chance encounter marked the start of a lasting friendship.
Our lunch today included my friend, D.W., and I., a friend of L.C.'s. Both I. and D.W. are published authors and I thought they'd enjoy meeting one another. Conversation was brisk and stimulating. At one point, I. turned to me and asked, "So, Patricia, what do you do with yourself while you're out here? How do you spend your days?" This question from a 70 year old woman who constantly writes, swims every day, takes master piano lessons and practices religiously, paints and attends frequent artists workshops around North and South America, not to mention being a devoted mother and grandmother. A very busy, self-disciplined individual. I never know how to answer such questions anymore. "I live life!" doesn't seem to satisfy. So this time I smiled and said, "You know, much my time is spent being with wonderful people." And so it is.
Yesterday's visit with S.S. who brought over some of her astounding art/journal box constructions, and the oil pastel drawings she intends to turn into artist's books. Lunch with D.W., one of this place and time's most original spiritual poets, besides being my treasured friend. My daily phone conversation with my dear husband E.D., a medical philosopher who has devoted his professional life to wedding neurology and psychiatry in unique and totally unrecognized ways. Driving to and from Simply Supper today with S.W., one of the most generous-spirited persons imaginable. The men and women who come to work and to eat at Simply Supper, a gathering full of authenticity, truth, caring and wisdom.
And this only describes a portion of two days!
I used to do my best to
come up with relevant, significant answers to the question, "What
do you do?" Now, such answers have become as simple and unassuming
as my life. For some reason I no longer need to justify my existence
by "meaningful activities". Life is so very precious.
Living it fully is all we're asked to do. How long it takes to
learn that! And what a help disability is in coming to that knowing.
THURSDAY, MARCH 23, 2000
A lovely stay-at-home day...that is, stay-at-home until my Lesbian/Gay Chorus rehearsal in the Castro tonight at 7 PM.
Had much "homework" to keep me busy. Needed to learn the song "Bohemian Rhapsody" before our chorus performs at the Academy of Friends Benefit Oscar Party this Sunday night. Played my rehearsal tapes over and over as I took care of my other assignment--to create a flyer for my friend D.W.'s poetry reading at a San Francisco bookstore on April 4. I also needed to choose poems and practice reading them aloud. D.W. has asked J.S. and me to read with her at that event and at the poetry reading/book signing I'm having for her here at my cottage on Saturday afternoon, April 1.
It is deeply satisfying to hear poems read aloud--even in my own voice--from D.W.'s newly published book, Marrow of Flame: Poems of the Spiritual Journey. Though I feel I know each poem as an old friend (after helping her edit and choose poems for this book two years ago), they continue to grab me in unexpectedly tender places.
Singing all day. Playing
with my computer to create a flyer. Reading poems to the birds
and neighborhood cats outside in my sunny garden. And now preparing
to sing with my wonderful chorus for almost 3 hours. How could
a day be more perfect?
FRIDAY, MARCH 24, 2000
In San Francisco we don't have homing pigeons, we have listening pigeons! I just met one today. For the last hour and a half I've been practicing with the tape I made last night at chorus rehearsal. For the entire time, a pigeon sat in the apple tree by my open window, perhaps 10' away. S/he seemed to be resting, with occasional fluffing of feathers and nodding of head. When my tape clicked off, I heard strains of someone playing a banjo nearby. The pigeon immediately flew off. To find the banjo player? Her/His life must be just one listening gig after another!
I'm getting excited about our performance on Sunday. Itâs apparently the largest Oscar party outside of Los Angeles. Called The Academy of Friends, it is a benefit for Bay Area HIV/AIDS groups and organizations. Food catered by some of San Francisco's finest restaurants, celebrities, live performances, large screens on the walls showing the Academy Awards, dancing to a live band until midnight (on the West Coast, the TV extravaganza goes from 6-10 PM). Tickets are a minimum of $150 and it is strictly Black Tie. Whoopee!
We get to enjoy everything,
plus sing for two 10 minute sets on the Main Stage. The theme
is "TimeWalk" so our songs represent different eras
of music. We're singing: "You Are the Light" (1960 Olympic
fanfare) and Time Warp (1974) in the first set; "Bohemian
Rhapsody" (Queen's hit from the 70s) and "Aquarius/Let
the Sunshine In" (from "Hair" 1967) in the second
set...with "Begin the Beguine" (Cole Porter 1935) as
backup. Last night the drummer and guitarist who will accompany
us came to rehearsal. What a kick! Especially on "Aquarius/Let
the Sunshine In". There is no way anyone could sit still
©2000 Patricia Lay-Dorsey.
Please use with attribution.