July 2006 -- Happy
Interdependence Day!
I had such a wonderful Double Nickel Birthday Giglet at ArtZ Rib House
last week that I'm extra glad I was born and have been waking up for
over 20,000 days. Thanks so much to those of you who came and
sang and danced and shook along.
I haven't used the Smile On A Stick in so long I'm not even sure where
it is.
In the last three months I've been busy with
Out Youth. This queer youth
group I co-founded in 1990 fell on hard times so I joined the board and
have just applied for the job of Clinical Director. Keep your
fingers crossed.
Maurine and I are going to take the critters over the Travis Heights to
see if we can catch the neighborhood parade. If so, photos to
follow.
March Fo(u)rth, 2006
(a.k.a. Command Day)
Thanks to a nudge from poet pal
Maggie Jochild I
requested my files from the FBI. The
People for the American Way
have simplified the
Freedom of
Information Act request. It's easy. Go for it.
That People for the American Way web site has some frightening links
about
Anti-Gay
Politics and the Religious Right. Make sure your stomach is
good and strong before you click on that one.
I just scheduled a Therapy Sisters gig for my double nickle birthday at
ArtZ Rib House June 30. My eighty-something mother's birthday is
three days earlier and I'll try to get her to come down from Dallas and
be feted with us.
3/3/06
Speaking of an attitude of gratitude, see if this doesn't lift you up.
~~~~~~~~~~~~~~~~~~~~
Dear Friends,
A profound assurance that beneath the visible messiness of current life
there are deeper layers still at work.
If you read the front page story of the SF Chronicle on Thursday, Dec
14, 2005, you would have read about a female humpback whale who had
become entangled in a spider web of crab traps and lines. She was
weighted down by hundreds of pounds of traps that caused her to
struggle to stay afloat. She also had hundreds of yards of line rope
wrapped around her body -- her tail, her torso, a line tugging in her
mouth.
A fisherman spotted her just east of the Farralone Islands
(outside the Golden Gate) and radioed an environmental group for
help. Within a few hours, the rescue team arrived and determined that
she was so bad off, the only way to save her was to dive in and
untangle her -- a very dangerous proposition. One slap of the
tail could kill a rescuer. They worked for hours with curved knives and
eventually freed her.
When she was free, the divers say she swam in what seemed like joyous
circles. She then came back to each and every diver, one at a time, and
nudged them, pushed them gently around. She thanked them. Some said it
was the most incredibly beautiful experience of their lives. The
guy who cut the rope out of her mouth says her eye was following him
the whole time, and he will never be the same.
May you, and all those you love, be so blessed and fortunate to be
surrounded by people who will help you get untangled from the things
that are binding you. And may you always know the joy of giving and
receiving gratitude.
I pass this on to you in the same spirit.
3/1/06
Happy Women's
History Month
2/25/06
Therapy Sisters Emeritus,
Marilyn
Rucker, has been podcast by our pal
Jeff Tveraas who does such
things at
www.austinconnection.net.
Marilyn says she included two never before performed songs: "Ten Stupid
Things Dr. Laura Says To Screw Up People's Lives," and "La Niña
de Bien," lyrics by Maurine McLean and her pals.
My sister-in-law and colleagues performed "Life's Too Short" at their
school's staff meeting last week. Several of them wore
I helped Lisa lose her sense of tumor
t-shirts. That was a wonderfully cheap vicarious thrill.
Thanks, Barb.
Hey, did you hear? In an effort to get on top of this bird flu
thing, Bush bombed the Canary Islands.
2/1/06
I continue to heal. Thanks in no small part to Linda the amazing
acupuncturist for an on-going jab well done.
Happy Groundhog Day. Thanks to Air America for pointing out the
ironic juxtaposition with the state of the union. One is a ritual
where we turn to a creature of little intelligence for
prognostication. The other involves a groundhog. We're all
in a Bill Murray movie.
1/31/06
I can't believe we're enduring another state of the union. If
only I were giving it, the whole thing -- applause and all -- wouldn't
be more than five minutes and everybody could sing along on the
chorus. I'm wearing my PROUD TO BE AN AMERICAN; ASHAMED OF MY
GOVERNMENT button.
From the laughing just to keep from crying department, Rep. Charles
Rangel helped kick off Black History Month. He was asked what he
thought of the prez and said, "Well, he shatters the myth of white
supremacy once and for all." Nuf said.
1/30/06
We just had a lovely visit
with Connecticut pal SJ.
SJ brought her constant
companion and tree climbing hound Livingston.
Livingston and Biscuit became
fast friends and played 'til they collapsed by the back door.
Livingston left some toys which Biscuit has found and taken outside to
Livingston's favorite tree. Fortunately, SJ plans to move to
Austin so these pals will be reunited.
Sharon was also here for the past week or so.
Sharon's the one who gave me the amazing
Strumstick. She works with
SJ at
Artreach in Norwich,
CT. As luck would have it, she'll be moving to Austin too.
1/3/06
Hats off to last year and to everyone who made it the best yet. I
don't really know how this next year could top the last one for love,
adventure, and amazement, but it'll certainly be newer. My OKC
friend Batch was right. Geopolitically speaking, if 2005 had been
a fish, we'd've thrown it back. But personally, since my years
seem to just keep getting better, I can't even imagine what 2006 has in
store. Or maybe it's time for a reframe. Maybe that's too
passive. Maybe it's the year for me to have something in store
for it. If I only had a brain. . .
My incision has been coming to life with sporadic small sharp shooting
pains. Linda The Wonder Acupuncturist suggests that's a sign of
life and renewal of nerves. Hmmm. Folksinger Gets Her Nerve
Back.
Biscuit got spayed yesterday. The vet thinks she probably had
puppies. How cute must they have been! She's having
post-morphine effects. Been there. Done that. Got the
t-shirt.
Okay, those of you to whom my many hats are off, let me know how I can
make it up to you this year. I better live a mighty long
time.
12/19/05
My hat is off to you. You are the seasoning in the season.
So, here's my seasonings greeting:
If you
have to lose your hearing, and it’s gradual and slow
May
your friends all speak so clearly that you hardly even know
If you
find you have a tumor, make it tiny and benign
If
your friends are talking loud enough they’ll never hear you whine
If the
tumor’s gonna kill you, go ahead and get it out
Just
make sure of your decision so you’re left without a doubt
May
your surgeon’s hands be steady, and for your recovery
May
your nurses be angelic and your meds be heavenly
As you
heal at home in pjs, may you find you set a trend
When
the love of friends and family makes the hole in your head mend
As
your income seems to dwindle and your bills somehow accrue
May
those loved ones gather round and keep you saying,
“Wow, thank YOU!”
Biscuit is still the big
news. And great big therapy.
Speaking of therapy, that
amazing gal who's giving me acpuncture is working wonders. She
wants no glory, but if you're looking for a good one, let me know and
I'll sing her praises and her name. People who haven't seen me
for a few weeks tell me I don't look so much like I need a smile
on a stick.
Also therapeutic was opening for The Austin Lounge Lizards with Maurine
on bass, WendySue Rosloff on bucket and spoons, and Purly Gates on
harmonica, bamboo sax, percussion, and whatever else. Last week I
went with Purly to the Wimberly Elementary School to record the kids
singing with Purly. All that and a wonder dog, too. Make
that an additional wonder dog.
12/1/05
I've been so grateful since Thanksgiving that I haven't had time to
reflect on my gratitude. And now I have even more to be thankful
for. Our family has grown by one shaggy and the human society has
room for one more. Meet Biscuit McRogers.
I know it's not all that
uncommon to have an acoustic neuroma, but this is like when you learn a
new word and suddenly you hear it everywhere. What are the
odds? Well, they're supposed to be one in 100,000. But I've
already met or talked to or heard about eight folks in Austin who've
had them and I just heard from another one! Six months ago I'd
never heard of it and now we could have a support group. So, have
your hearing checked!
11/17/05
Since my acoustic nerve was messed with when they removed the tumor, I
look like I could only afford half a face of botox. Some folks
call it my Patricia Neal imitation. The doc says six to nine
months and I should be reasonably symmetrical again. In the
meantime, my eye doesn't blink so I do drops and wear a clear patch by
day to keep it from drying out. At night, I tape it shut.
Maurine has a wonderful sense of humor. This card came in the
mail today.
It was from "Los tuertos del mundo."
Polly and Debra, that goes for you, too.
11/12/05
When when I'm through being alive, I'll be privileged to have been
alive. And the longer I'm alive, the faster life seems to
be. Life After Tumor Eviction (LATE) is so much faster than
LABE. I wonder if that's due to the chip they left in
there. Or somethiing they took out.
And I want it to have been worth all the space I took up, all the time
and effort and energy it took to feed and clothe me, all the breath it
took for people to speak to me, all the strings I broke, all the
computers I went through, all the ink I used up writing letters to the
editor, all the toast I burned, all the water I wasted as I made up
songs in the shower, all the loved ones I inadvertently hurt, all the
panhandlers I passed by, all the pennies on the ground I was too rich
to pick up, all the prayers I said I'd pray, all the food I wasted, all
the books I haven't read yet, all the bloggings I clogged up the
internet with.
A week has sped by since I was blessed with the benefit of another
benefit. Joette Pelliccia hosted a Wimberly Homestead House
Concert last Sunday afternoon at which
Christy Claxton,
Jenny Reynolds, and
Sharon Bousquet played their
hearts out. A very sweet day. Thanks.
Cheryl Wheeler has a
wonderfully funny song called
"Unworthy."
My internal jukebox plays it constantly.
11/4/05
I am privileged to be alive.
Dustan Levenstein,
whose mother Ruth hosted a house concert for us, chose to use The
Therapy Sisters anthem,
Do Something,
for an English assignment. He has a
very cool web page with lots of
samples of his excellent writing. Dunstan suggested I add a link
to the lyrics, so I did and included the mp3.
Do Something. This guy
really knows how to make a recovering humdinger folksinger's day.
Dustan
Levenstein
11/1/05 • Per. 4
Do
Something
The Therapy Sisters
This song
appealed to me because it is a very funny and a more general call to
action: if something wrong happens, Do Something! The central
message is, if something goes wrong, do something. It repeats
this after each and every line. There’s one literary
device: repetition. You get ‘Do something’ engrained into your
head, and by the end you would ideally decide that it may be a good
idea to do something. Another device used is indirect
allusion. The funniest case of this is “When the Supreme Court
says, ‘Here’s your new president,’” a very humorous way of referencing
their hatred for President Bush. It says “hey, don’t forget to Do
Something about our sorry political state!” Repeated several
times in the song is something along the lines of “get up and go.” For
example “When your get up and go got up and went.” And later:
“When your get up won’t get up and go.” This gives you a visual
way of thinking ‘Do Something!’
This song
uses Ethos – one aspect of emotions is humor, and this song has a lot
of that! This song is more of a general idea; the underlying
message is ‘if something goes wrong, Do Something!’ Often, we
fail to address our needs, communicate our opinions, and act on
them. This song has a very important message to convey for a
proposed amendment that would cause homosexuals (including the Therapy
Sisters) to lose their marriage rights because they no longer fit the
definition. So Do Something, that is, vote against it! Or
for minors? Spread the message. It’s wrong! This song has primarily
Lisa singing, who is very active and convincing. She really puts
the spirit into it.
~~~~~~~~~~~~~~~~~~~
Having said that, my good friend Sally and my long-time friend Shelley
both reminded me there are times when you need to not do something and
just sit there.
11/2/05
It's been a month. Time to start thinking about Life After Tumor
Eviction. It's never too L.A.T.E. That's at least as
frightening as the surgery. But on good days, it's more
exciting.
Went to the doc today. He said I can drive around the
block. Slowly. I asked about the blinkless eye that's
driving me crazy. He said, "Sorry. Come back in two
months." I'll see the hearing device specialist next week.
My fulltime job now is to figure out how to be a patient patient.
I need to emphasize the part where I'm grateful to be alive and humbled
by the support I've gotten, while I downplay the part where I whine
about not being able to read or smile or stop napping. A very
small price to pay for the privilege of breathing this side of the
sod. Symmetry is overrated. Now that the adrenaline rush
has worn off and I'm wondering how I came down with narcoleptic
exhaustion, I need to figure out how to continue to experience this
corporeal adventure, and not wish it all away to the future when I've
been assured that my body will again do more or less what I ask of
it.
While I try not to feel like a slug, more friends have come down with
more "tumors" in the form of dying loved ones. I hope to pass on
to them the love that so many people have showered me with so
freely.
From page 126 of Pronoia by Rob
Brezsny
"Chiaroscurofy" is a word
that means "to find a comfortable place where you are partially in
darkness and partially illuminated, or half in shadow and half in
sunlight." You may actually do this some day.
10/31/05
From page 58 of Pronoia by Rob Brezsny
Here's a message from our
sponsor, Tatsuya Ishida at www.sinfest.com: "All I ever wanted in
life was to make a difference, be worshiped like a god, conquer the
universe, travel the world, meet interesting people, find the missing
link, fight the good fight, live for the moment, seize each day, make a
fortune, vanquish the dragon, be super popular but too cool to care, be
master of my own fate, embrace my destiny, feel as much as I can feel,
give too much, and love everything." Tatsuy says it's fine if you
want to say that this is what you feel, too.
10/29/05
Blessings abound.
Maurine gave me some new big fun pjs. Monkeys this time. It
was all I could do to get them off the gorilla.
In case you can't see, there's monkeys on TV, monkeys holding
hands, monkey in a hammock with a coconut drink and flies, monkey
slipping on a banana peel, monkey barbecuing, monkey in a recliner,
monkey bowling, and a monkey taking a trip to San Simian. If only
George were so curious.
And then Candice and Klaus blessed me with a care package from North
Carolina. It came with entertaining notes on all the wrapped
goodies. I love the windup frog, the Budda finger puppet,
the nasal pencil sharpener, and the unstressing Martian. But my
favorite is the National Embarrassmints from
www.philosophersguild.com.
Mostly because the back of the tin says "Fight errorism: Boot
Bush."
Right before surgery, Nancy Scott was in Tennessee and sent us a box of
beautiful
lucky
buckeyes. Then Toni and Karen gave us the perfect container
for the buckeyes -- a gorgeous gourd.
But wait! There's more. Our Chilean pals, Loreto and Chico
and Ximena, brought us a beautiful Chilean arpillera. We use it
here as a backdrop for a couple of other new blessed treasures.
From page 78 of Pronoia by Rob Brezsny
Prediction: As an aspiring
lover of pronoia, you will have a growing knack for gravitating toward
wilder, wetter, more interesting problems. More and more, you
will be drawn to the kind of gain that doesn't require pain.
You'll be so alive and awake that you'll cheerfully push yourself out
of your comfort zone in the direction of your personal frontier well
before you're forced to do so by divine kicks in the ass.
10/28/05
Here's more evidence that the universe and great friends and loved ones
are all
conspiring to shower me with blessings:
Maurine came home last night from a conference in Denver.
Sweet Steve Kubenka brought me lunch AND stamps!
Linda the
angelic acupuncturist came back.
Sharon
and Heidi in Connecticut sent me a strumstick.
It's a
very cool
3-stringed instrument that resembles a dulcimer but you play it like a
guitar. Pretty much no wrong notes. Sweet. It's great
to sit around and play since I still can't really read for any length
of time. If there weren't so many compensatory blessings, I
might be tempted to whine about that. But there are.
So I'm not.
Sharon is with the
Second
Step Players whose annual O'Neill show we were so sorry to have
missed recently. But sweet S.J. and Becca and Sharon sent us a
DVD of the show so we can enjoy it. Check out this
Connecticut-based theater troupe of amazing mental health consumers and
volunteers who've been described as "One Flew Over the Cuckoo's Nest
meets Saturday Night Live." The Therapy Sisters have enjoyed
knowing and sometimes working and often playing with these folks.
A perfect fit!
Also this week, Marilyn Levin
sent a care package.
Marilyn is the pal from Wisconsin who spent the night at the Erwin
Center with me to get tickets to see the Dali Lama for my new acoustic
neuroma pal, Polly. Marilyn gave me her tickets so Maurine and I
could see His Holiness, and then Marilyn went off
with
Mobile Loaves and Fishes to
help Louisiana Katrina neighbors. Among other goodies, she sent a
magic wand, clown noses, Wisconsin leaves, some CDs about
The Soul of Money by Lynne Twist,
and a beautiful but surprisingly loud instrument from her trip to
Bali.
Click on the Bali instrumenet to hear what it sounds like. And be
amazed.
As if all that weren't
enough, my little sister Mimi sent a book on CD read
by Barbara Rosenblatt, my favorite reader of books, and two very
talented
hand puppets. The duck quacks and the dog barks -- three
songs each. Mimi said if I don't feel like chatting or
being
nice, I can let the critters quack and bark for me. Click
on the puppet picture to hear them sing a duet.
You know, everybody has
their "tumor." It may take the form of a
breakup, a dying parent, a lost job, an indictment, a frightening
diagnosis, or a stolen car. I just wish everyone could feel
as
supported and blessed in their "tumors" as I have felt in
mine.
I'm slowly getting around to a month's worth of emails. Thanks so
much to everyone who wrote with prayers and well-wishes and white light
and tumor jokes.
10/24/05
Hard to believe my father died 25 years ago today. Needless to
say, I thought about him and other long-lost loved ones when I counted
backward from 100 in the hospital three weeks ago. I knew on the
other side of surgery I'd see loved ones. Just didn't know which
ones. That was very comforting.
This just in from Nancy Nesser and friends in OKC:
No
fear said the queer who can hear in one ear - steer clear of the beer
til the blur disappears - be of good cheer - no tears will appear -
relax, recoop, re-appear.
I love it that my health care challenge
is inspiring such creativity!
10/22/05
This just in from WendySue
Rosloff.
Scroll down to see what else this amazing goofball sent me -- besides
cookies.
A
Tale of a Head
she went to the doctor her head feeling sore
the doctors then told her, "well, you have two more"
she said "you never told me the first thing i had"
it might be my hearing, so, "oops it's my bad"
Doc said "you hear fine but you're right on one thing
You heard me say two more that we need to zing."
"maurine would you tell me again what he said
I thought he said that i had two more in my head".
Well fast forward now those "two more" s
in the past
the two more they're no more
and now with some rast (all right, rest)
our lisa'll be singing and smiling like new
And spreading her beautiful spirit to you!
In addition to peace frog
pjs, Shelley also sent me an antique Therapy Sisters t-shirt.
Years ago we hand-painted these shirts with an Emily Kaitz design while
we sat around watching probably something like Thirtysomething.
This one still has the glitter. Amazing.
Shelley also sent a jigsaw puzzle get well card.
Speaking of thirtysomething, it
was about that many years ago that I lived in Houston. I was
having a bad day on the freeway when a car cut in front of
me. Before I could honk at it, I noticed its license plate:
GO LR. Shelley lived in Houston then and she promptly made me a
banjo strap with that phrase written on it. Happily, she reminds
me from time to time.
Yesterday sweet Glynda Cox brought me ArtZ Rib House roasted garlic
soup and spent the afternoon just hanging. She's one of the many
people Maurine has enlisted to help me learn the art of just
hanging. And catching up with folks.
Then the amazing mysterious Nancy Hoffman brought an entire picnic
cooler of dinner treats including tomato bisque soup into which Glynda
and I mixed the mashed potatoes for an unforgettable taste treat.
And I'm still wrapping my mouth around the frozen desserts.
Maurine was at a workshop all day, so this morning Megan Seaholm gave
me a long overdue lesson in hanging and catching up. I tell you
what, this is one tumor with many silver linings. Megan also
brought me a Halloween basket which included a perfect mask which goes
perfectly with my smile on a stick.
The afternoon brought Marta and Michael Blumenthal, who brought juice
and some healing Colombian chicken soup and a great attitude.
Bless their hearts, they spent the rest of the day giving me TLC and
waiting to pass me off to Maurine.
Maurine is still trying to remember which is my "good" ear. To
that end, she gave me a milagro of an ear. Little bitty thing
which we'll turn into an earring. That way she'll know which side
to stand on and talk to. But then, also from the little bitty
thing department, yesterday I got a package from New Jersey.
Inside was a gold charm bracelet sized megaphone. And no
name. I was able to track the company down and find out it was
from WendySue Rosloff and I'm thinking it could double as an ear
trumpet. Maybe at a flea circus.
From page 88 of
Pronoia,
"The sky not only isn't falling -- it's rising. The top of the
troposphere, the atmosphere's lowest layer, is slowly ascending."
10/21/05
Lisa here
Maurine got some fashion-minded folks excited about seeing my new
pjs. So, here goes.
Here are some that my dear friend Shelley sent. I love the peace
frogs.
Here's a close-up of the frogs. A peaceful plague.
Then there's the famous fiesta ware pjs.
And the slippers complete the panda pj ensemble.
Yesterday Maurine and I went to
our chiropractor, Dr. Kimberly Heinrich. She spent tons of time
with me and then faxed me info about healing brains and nerves and
whatnot. Great stuff!
Then I went to the doc and got extra eye patches. We'll decorate
one for Halloween.
And then an angelic acupuncturist who wants to remain nameless made a
house call and needled me. And I napped. And healed.
And then, since Maurine's out of town, sweet Suze Miller brought dinner
and spent the night. Mmmmm, rice pudding!
See, the universe really is conspiring to shower me with
blessings. No question about that. The part I'm unsure of
is whether or not it's grandiose to assume that means I'm to put what's
left of my brain to really good use.
LeeAnn just called with the bumper sticker for the day: STOP
GLOBAL WHINING!
10/19/05 Lisa here
No complaints. Well, I wouldn't mind being in Ft. Worth this
weekend to hear Emily and The Lizards. And I can't wait 'til my
right eye can blink again and I eat solids safely and read for
hours. But it seems a fair trade for a tumor. And I figure
if only one side of my face is working, it's fitting that it should be
the left. And if I'm going to be President, I should practice
just talking out of one side of my mouth. Every tumor's got a
silver lining.
Spent a lovely day with Patti and Richard Herndon. I fed them
pancakes; they took me erranding and I got the story of Patti's
life. Seemed another fair trade.
Maurine's work is taking her out of town for much of the next week and
she's lined up people to spend the night and take me to the
store. But I'm really quite fine. When folks come to
visit/sit with/take care of me, I ask them read to me from
Rob Brezsny's Pronoia.
Thanks to Sally McIntosh for turning me on to it. Pronoia is the
belief that the whole world is conspiring to shower you with
blessings. I'm living proof.
10/16/05 Maurine reporting in.
Last night Lisa went to the neighbors' house for dinner and a hot tub,
along with her international attendants, Valeria from Argentina and
Fede from Italy. That was great therapy for her back after so
much time in bed. Scintillating company with the Edwards family and
pals. And she very carefully ate a hamburger without the bun. Eating is
a challenge due to temporary paralysis of half her mouth, lips, and
swallowing apparatus. So small bites and sippy straws have been the way
to go. It will be months before she regains function in the right
half of her face, so it's quite the exercise in patience. One eye
is patched or taped shut to keep it from drying out, so her depth
perception is off. Yet Lisa's energy is so strong that it's hard to
convince her to rest, to go slow, to be careful...that's just not the
kind of hairpin she is.
I was in the presence of greatness last night, at the Cactus Cafe
listening to funny man Frank Meyer and then the Austin Lounge
Lizards. The Lizards were in great form and the place was packed
with people sore from laughing. Next Saturday the Lizards will play a
benefit for Lisa in Fort Worth at the Jefferson Freedom Cafe, with
Emily Kaitz opening. Sure to be a hilarious time--catch them if you
can: www.jeffersonfreedomcafe.org or www.austinloungelizards.com.
This morning Lisa ventures out to church for 2 hours, with orders to
take it easy, which she will ignore. Meanwhile I'm catching up on
translations. More photos of pajamas to come.
10/14/05
Maurine here. Today Lisa had 20 staples removed from her head. She can
finally wash her hair and sit in a hot tub. She also got another model
of eye patch. The eye is the biggest complaint lately. The right side
of her face has sensation but not function. So she can't close her
eyelid all the way. In order to keep that eye from drying out, she has
to put drops in constantly, and tape the eyelid shut at night. She got
a transparent eye patch today from the doc, which looks like half a
pair of swimmer's goggles. The doc makes no guarantees on the
speed with which she will recover the facial nerve, but his guess
is between 6 and 9 months. That's a lot of eyedrops.
This afternoon she is parked in an easy chair in the back yard, under a
tree and under a sun hat with her ukelele in her lap. Lenore, a pal
from San Antonio, is reading to her. The mail came and she got
more new pajamas from my mom and stepdad in New Mexico. We'll have to
post photos of her pajama wardrobe.
Big thanks to all Lisa's sitters. That allows me to work a bit. I have
plenty of translations and the last week of the month I'll interpret a
conference in Denver, so thanks in advance to the round the clock
sitters for that week.
10/13/05
Lisa here.
The latest Tumorick. This one sent from Peg Miller and thunk up
by Glynda Cox:
When we heard of Lisa's tumor
It gave us quite a start! Not to
hear?
"Oh, my dear! Never fear, it's just an ear!"
We reminded her with humor -
"You have ALWAYS used your heart!"
Peg was in the waiting room all day entertaining folks and keeping
their minds off my brain. Anyone who knows anything about Peg's
health will recognize that as a sacrifice second in endurance only to
that of the scrub techs. And they were getting paid! Anyone
who knows anything about Peg will know that she would have had to have
a grand opening in the surgical theater herself in order to have been
anywhere else. Glynda's own health issues prevented her from
being there all day. But even though their doc, David Wright,
came to explain Glynda's absence, they both appeared like visions later
in the day. Many years ago, Peg and Glynda started Chicago House
and went on to give many artists their start -- including The
Sissies. Thanks, gals.
Going to the surgeon's office tomorrow to maybe get staples out and
hopefully get told to go soak my head.
One night in ICU I had two nurses. One named Angelica and one
named Angel. Doesn't get any better than that.
10/12/05 That scoundrel Lisa! While I was in the shower this
morning, she snuck into the kitchen and did the dishes! Then I
had to talk her out of walking the dog. I'm trying hard to make her
nap, but she's getting feisty already. Today's highlight in the mail
was a box of Wendy Sue's cookies all the way from California. We opened
a fresh carton of milk and dug in. Lisa's appetite has increased from
one thimble to two thimbles, while mine is measured in dumpster sized
portions. No telling where she gets her energy with so few calories.
Bob, Cindy, and Rachael Edwards brought over shepherd's pie for
dinner--fabulous homemade comfort food, and since Marilyn Rucker had
supplied us with Blue Bell Homemade Vanilla, our meal was complete. Why
is this entry all about food? I'm going back for more cookies.
Lisa continues to surprise and amaze and wheedle about going to church
this Sunday. Please send handcuffs!
10/10/05
9 p.m. Here are photos as promised! Lisa's scar reflects the subcranial
route the surgeons took. This was a last minute change. They originally
planned a translabyrinth surgery that would drill through the mastoid
process and the cochlea in order to reach the tumor. That means they
were going to drill right up close behind her ear and her jaw would be
sore for chewing, yawning, talking et al. But after consulting their
GPS devices, and the latest MRI, they entered farther back and
retracted the brain to reach the tumor. So Lisa can chew normally now,
albeit with half her mouth. She just has to be careful how she
lies on her pillow. There are at least 20 staples.
Lisa is up for an hour at a
time, receiving visitors in the living room in her finery.
Here Manito is finding a place
to sign the quilt that Amy Flinn made for Lisa. The other side is denim
patches and jeans pockets for storing supplies that would otherwise get
lost in the covers--chapstick, radio, pack of cards. A work of art and
full of love! Manito signed: Heal, girl, heal!
Lisa is amazing us all with her bouts of energy between naps. I'm
reading emails aloud to her, since it's a strain to read so far, and
she is dictating replies.
10/10/05 Sorry to keep you waiting--I took Sunday off from the
computer. Yesterday Lisa had her first bath since the hospital, which
was glorious. She got powdered and lotioned up and put on her new polka
dot pajamas. She feels great! She received a few visitors and is
eating well thanks to our chefs, Vicky Goff, Gail March and Lisa
Scheps. More pals brought by protein powders to put a punch in every
juice she downs. Thanks so much to the aftercare team! If you have
emailed offering to help, I will phone you soon. Still catching up on
that.
A word about hemiparesis. No, half a word. One side effect of the
acoustic neuroma surgery is temporary facial paralysis. So Lisa no
longer has the use of her right ear (permanently) and for a few months
she's down to half a mouth and one eye. The eye part has nothing to do
with vision--that's fine. But she can't blink effectively, so she
either fills the right eye with 30 weight lubricating goop or tapes it
shut so it won't dry out. Therefore you really have to "get on her good
side" to be perceived. So she's not reading or doing email yet.
She is enjoying books on tape and lots of naps. My goal for today
is to take some photos to post this evening. You must see this
impressive scar! And the famous polka dot pajamas, of course.
10/8/05 Lisa came home this afternoon and is now resting in bed
with Manito, our Shih Tzu, who is an attentive nurse. Thanks to all her
transport team: Gail March, Toni & Karen, Bob Edwards, Flash, and
Jan Dawes. The battery died in our van, so we had to make alternate
arrangements quick to get her home. Everyone pulled together to help
with her check out and transport, stay with her while I filled
prescriptions, and get her settled and unpacked. Vicky Goff came by
with phenomenal soup and Nancy brought bags of surprises and
entertainment. Tomorrow we are just going to stay home and rest. Feel
free to call. If she gets too tired from phone calls, I'll just let the
machine pick up, so know that you're not bothering us if we answer.
We talked to the surgeon this morning and he confirmed that the tumor
had grown about another centimeter since the MRI posted on this web
page. It was big and bad, but they were able to get it all. Lisa will
need a number of months to get all her energy back and recover function
in her right facial nerve. We will look into gadgets that make the
house lights flash when the doorbell rings to help deal with the
hearing loss.
I will catch up with emails tomorrow--thanks so much for the continued
support. Hope to post photos soon of her impressive head incision full
of industrial staples. Just in time for Halloween.
10/7/05 3:00 p.m. Lisa is now in Room 942 at Brackenridge. If she
can walk several times today and keep down solid food, they will send
her home tomorrow, Saturday. Thanks so much to all who helped
with hospital shifts, bringing food and supplies (Jack and Jill Nokes),
and helping us figure out how to work the system. Special thanks to
Lisa's mom and sister Mimi, who were always at the ready. Peg and
Glynda, Bonnie and Kathy gave us invaluable insiders tips about bribing
the nurses with new pens and CD's. Worked like a charm. Thanks to the
dog care team of Lisa Scheps and Sheri Pate. And to Lee Ann Newcomb,
for being my right arm despite having both hands full and working her
butt off. Toni and Karen were with us all the way, with ample common
sense and staying power.
We need more people to help with aftercare. Lisa will be homebound for
at least a month, and I don't want to leave her alone on days I have to
leave the house. No medical care involved, just entertain yourself and
bring her drinks/food and chart when she takes meds. We have wireless
internet if you want to bring a laptop and, thanks to Gail March, we
have an extensive DVD collection. I have the next 2 weeks fairly
covered, but send me email (BiLingo@aol.com) if you can take a
shift during the last week of October, either 4 hours in the morning or
4 in the afternoon. Gracias! If you live far from us, all funny cards
and goofy gifts are greatly appreciated. Lisa will be back on the
Internet when the double vision settles down, but till then I'm reading
her mail to her.
Lisa's main complaint is still nausea, followed by double vision,
dizziness, facial paralysis, and pain. But she is able to sleep and the
symptoms are slowly receding. She can tolerate a brief visit, or you
may want to wait one more day and see her at home, 2505 Princeton
Drive, where you are welcome and we don't charge for parking. Lisa has
progressed from jello to smoothies with protein powder and blended
soups (Thanks, Elaine!). She eats very small amounts, but what goes
down has not come up, to misquote Newton.
OK, back to the hospital
now,
and the next entry will be about Lisa's triumphant return to her very
own bed. I am ironing some panda bear pajamas (with matching slippers)
to put on her pillow.
10/6/05 3:00 p.m. Today Lisa will be transferred to a room on the 9th
floor. Medically she is progressing. However, she has nausea and double
vision, so please don't visit till tomorrow. She's trying valiantly to
keep her jello down. As soon as the nausea passes, I'm sure
she'll be great. She hasn't eaten solids since Monday dinner, so she is
fairly weak, but very glad to still be here and looking forward to
feeling better. She has a cardboard smile on a stick to make up for the
facial semiparalysis. The tumor destroyed her hearing in her right ear
and that's not coming back, so we will look into different varieties of
hearing aids. I'm trying to convince her to wear an earring only on the
good ear and then people can remember to talk to the earring. I think
she'll practice walking again today. Once she can stand, walk, swallow
pills and keep solid food down, they will send her home. Looks like
Saturday.
10/5/05 EVENING Today Lisa was able to stand up and move to a
chair, then sit in that chair for about an hour, then get back into
bed. That was a major accomplishment, considering her dizziness and
nausea. The doc says she has small pockets of air in her head that
cause nausea and they will be reabsorbed in time. Until that happens,
she's fairly miserable and never far from a basin to puke in. That
being said, the medical staff are pleased with her progress and may
move her to a room if she can overcome the nausea. She is only
consuming clear liquids so far. She's napping as much as possible,
assisted by morphine. Seems the nausea is worse than the pain from the
hole in her head, so we're hoping tomorrow will be much better as the
anesthesia leaves her system. I returned a number of calls today
and will continue tomorrow. If you live in the Austin area, I may be
calling on you for help with aftercare. We need to keep this gal calm
and fairly housebound for a month and that could require some wrestling!
10/5/05 News for visitors: please wait till Friday. Lisa is in ICU for
2 more days for observation and tests. She is on morphine and
antinausea drugs and feels too puny for visitors yet, but she sends
lots of love and thanks. During the operation, the facial nerve was
stretched and pulled because it stood between the doc and the offending
tumor. As a result, Lisa has temporary facial hemiparesis, which means
she can't move the right side of her face for a while. Her speech is
hard to understand and she's using some sign language instead and even
that is groggy due to the morphine. All this is not to scare you,
because it is normal, but just to let you know she's not receiving
visitors till Friday, when she will be up to talking. Even in this
state, she is joking and wisecracking, but she is asleep more time than
she is awake. Her email is HiSissy@aol.com. Her mailing address for
greeting cards appears in the previous email. I slept by her bed last
night and helped Her Urpiness as needed. For example, at 4am they took
her away for a CAT scan. Be alert because they may sell it on ebay.
Thanks for your concern and phone messages. I am answering phone calls,
but only during breaks from taking care of Lisa, so please be patient.
As far as my needs, I'll need more help with Lisa aftercare once she is
home. If you are interested, email me at BiLingo@aol.com and I will let
you know what dates. She should be home and mostly in bed for a month.
Despite all these details, we are thrilled with her progress and
grateful for all your love!
10/4/05 Good news: successful surgery and recovery under way!
Lisa checked into the hospital at 5:30 a.m. and was wheeled away to
surgery by seven, after receiving a blessing from Revs. Bill and Amy
Adams. Her treatment team included a nurse who is a Therapy Sisters
fan, so she was in very loyal hands. We got a call with her progress
every hour and things went smoothly. The doctor had predicted a 10 hour
operation, but was finished in 8 hours--quick, huh? At 3 p.m. Lisa was
sent to ICU where she will spend the next two or three days under
observation. I left her at 6 p.m. when the doctors made their rounds.
She was able to sign, talk groggily a little bit, and could answer
questions, eat ice chips, and sip ginger ale. I'll return after
rounds and stay overnight with her. Thanks so much for all your
support. She floated on love and prayers all day. Big thanks to those
who kept me company in the waiting room: her mom and sister Mimi, Peg
Miller, Lee Ann Newcomb, Tere Gutierrez, Jill Nokes, Margaret Parker
and girlfriend, Silvia and George Kenig, Jan Dawes and Al
Lindsey. By Friday Lisa should be in a hospital room, out of ICU,
and she should go home this weekend. She has temporary facial paralysis
on the right side, which should fade over time. That makes it a little
hard to understand her speech, so I don't know if she will take phone
calls yet. Other than that, she looks good. Her color is normal, her
surgical scar is clean, and her sense of humor intact. She sends her
love and gratitude to all!
At least that's what it looked
like as of 6/3/05. You're seeing several images of an MRI. I know
it looks like I snorted a golf ball, but many people swear it's
the Incredible Shrinking Tumor. They say, in fact, that I am
losing my sense of tumor.
Here's the story:
If a folksinger who loses her nerve is gonna get a tumor in her head,
it would probably be called something like an acoustic neuroma.
The good news is that it's benign and slow-growing. The bad news
is that it's pretty good-sized and pushing up against my brain stem.
But actually, there's lots more good news.
Several years ago I started noticing hearing loss in my right
ear.
Maurine nagged me to get my ears checked, but could I hear her?
No! My
father had the same thing, so, having no health insurance, I figured,
oh, well. Within the last year I started noticing odd facial
tingling on the right side that felt like novocaine wearing off.
I finally put those two symptoms togther and Google diagnosed me as
having a probable acoustic neuroma. In June we were in Phoenix
visiting
our gal pals there, one of whom works at an imaging center.
Leeann got me right in for the MRI you see here.
Like most newly diagnosed folks who find a tumor in their head, I
time-travelled to the wreckage of the future. Thanks again to
Google, I didn't spend much time there. I found out these little
buggers are very common [1 in 100,000], and slow-growing [faster in
women, of course, cause we're such good nurturers], and unless ignored,
not fatal. Now that I have a clue, My Neuroma [sing it--sound
familiar?] seems more like an expensive surgical inconvenience.
And I feel incredibly lucky.
More good news: I'm not in pain. No tinnitus. No
balance problems to speak of. Actually, I'm relieved to return
from a trip to the future where I died a slow and agonizing death after
turning into a brain-tumored monster nobody recognized or could stand
to be around and I couldn't play guitar and, thanks to W, Maurine
wasn't even able to declare bankruptcy after staggering medical bills,
to a present where, well, I feel fine.
I've seen a couple of surgeons and I'm waiting for another
appointment before deciding what to do.
Wonderful news: I recently got myself enrolled in Austin's new
amazing healthcare program for poor musicians,
HAAM. Looks like the
hospital bill will be pretty well covered. We're still not sure
how much the
other medical bills will be or how long the recovery. But we'll
be playing some Tumor Removal Fund House Concerts in the next couple of
months, and maybe some after recovery, as we plan the Successful Tumor
Eviction Party. I hasten to add these may all be parties to
celebrate the successful shrinkage and disappearance of the tumor in
lieu of surgery.
Excellent news: One of the many ways people have shown their
support is by forwarding our emails to their email lists and pals and
far-flung cyber neighborhoods. As a result, I've made friends
with a
gal who has a similar little rascal and is having surgery in
September.
Maybe we'll start a support
group. Maybe start
one for our significant anxious others.
It's obviously not a secret. We're definitely welcoming all
prayers, well wishes, white light, positive energy, healing messages,
and of course, tumor jokes to help us through this adventure. Oh,
and I'll pay more attention when Maurine nags me.
Watch this space for updates. And get your hearing checked.
July 16, 2005
Acoustic
Neuroma -- The Basic Facts
With surgery on a tumor of this size (2.5 cm), I'll lose what's left of
my hearing, so I might be saving up for one of these attractive
bone conducting
hearing aids.
Currently, my favorite anagram for "Therapy Sisters" is "pithy ear
stress." [see below]
7/17/05
This just in from Tony Beckwith:
Is surgery good for
a tumor?
wondered Lisa, a cool baby boomer.
I need that, she said,
like a hole in the head,
better zap it with my sense of humor.
8/2/05
Though the surgeon may have a knife in my head, many people appear to
have a
stake in my health. I'm honored and flabbergasted and grateful at
the outpouring of love and support. So much so that I feel
compelled to give serious consideration to putting my future tumorless
head to good use. No surgery scheduled yet, but lots of house
concerts and other fundraising life-affirming events coming up in the
next couple of months. [See
www.thetherapysisters.com/schedule.html]
Point of clarification: An acoustic neuroma is not a brain tumor;
it's just a head tumor. For those of you who've never had
something growing in your head where it wasn't supposed to be, it's a
distinction without a difference. For those of you who've had a
brain tumor, I realize it's a significant difference. But those
of
you donating to the tumor removal fund are still welcome to think of it
as The Lisa Rogers Brain Trust. I know I do.
Maurine is nagging me again. I better listen. She's bugging
me to keep learning to be gracious and grateful and say thank you and
let people be generous. So we set up an account: Lisa Rogers
Special Account #111242 at PECU, 306 East 10th St, Austin, 78701.
8/11/05
Lots of people are praying for me. Including my nephew Mark who
said, "God, please let Auntie Lisa get a good doctor and not a crazy
one that would just make things worse." From his lips to God's
ears to the neurosurgeons hands.
I have an appointment with the
neurosurgeon
on August 24th.
Yesterday I had my
chakras
tuned. It gave a whole new meaning to "All night, all day,
angels watchin' over me, my Lord." I'm having a heavenly healing
adventure. Check out
Cindy
Shelton.
8/16/05
This just in from
Steve
Hopkins, my pal and neighbor and co-conspirator in the
Austin Conspiracy of
Performing Songwriters. Steve claims this is the result of
staying up late when nobody's watching.
By the date of your birth you're a
boomer.
Unless I miss my guess, a late bloomer.
Does having an acoustic neuroma
Count towards a folksinger diploma?
Who says there's no humor in tumor?
Then Steve stayed up even later
I have a good friend named Lisa Rogers
Her heart's so big it could take in lodgers
But in her head there's this rock
Not the kind played at Woodstock
When it's gone we'll do the "fish cheer" like old codgers.
and
decided to call them Tumoricks.
There's afine young [sic] folksinger I
know named Lisa
She's a bit "off balance" like that tower in Pisa
Her neuroma's acoustic
Which they'll fix with a glue stick
Then she'll be stuck singing songs to pay off Visa
Maurine's brother Pat sent
these tumerical offerings:
A fine lady as light as a fairy-o
was hearing no longer in stereo. :(
With some woop woop woop woops!
she gave frowns upward droops! :)
Like the humor of Moe Shemp & Larry-O
A folk singer with multiple psychoses
Experienced a limiting neuromis.
She’ll be famous like Bono.
But why can’t her mono-
Be as brief as mononucleosis?
8/232/05
I got to play at the Crawford rally last weekend. I'm going to
look back and realize that Cindy Sheehan, this 21st century non-profit
prophet, was just two hours away and I'm going to wish I'd sprung for a
couple more tanks of gas and gone up to marvel at the wonders she hath
wrought. Two minor wonders are the new songs she inspired in
me. I got to sing "George Don't Know Jack About Jesus" at the
rally. You can hear a rough version at our
soundclick.com
page. The other song is "Aren't You Curious, George?" I
hope to have that one recorded soon.
Our pal Gail March went with me to Crawford. She was wearing a
very photogenic flag shirt so the cameras followed us around.
Since I'd just finished "George Don't Know Jack" the night before and
hadn't quite learned it, Gail held the lyrics for me. We no
sooner got off stage than she looked down and found this:
I'll be damned if she didn't give it to me. (She
keeps giving me stuff.) Okay,
so I looked it up online and it has something to do with 9/11 and W and
nationalism. Creepy. Too bad. I changed its
meaning. Forever.
This last weekend Gail hosted a very cool tumor removal fund house
concert. Thanks, pal!
Thanks to my friend Jill Nokes for "Losing my sense of tumor." I
was looking for a good graphic for my t-shirt and found this cute
little open head.
The coolest part is the web page
where it lives. It's a UT page for kids about
Understanding,
Reducing, and Preventing Stereotypes and Prejudice.
8/28/05
I made a couple of pilgrimages to Crawford this past weekend. I
had to
experience the movement. The web is happily full of many versions
of the peace movement's rebirth at Camp Casey. I
could easily gush.
But I just put up
some photos. And they're taking the show on the road:
http://www.bringthemhomenowtour.org/
I was inspired to make up another song. This one about military
recruitment in high schools. They really do want to leave no
child behind. Folks have asked so I'm uploading the
latest lyrics.
9/10/05
Surgery scheduled for October 4th. That's St. Francis Day.
They say you got to walk that lonesome valley by yourself. But
I've never felt so accompanied on a journey. Thank you so much to
all my fellow travellers. I am the luckiest folksinger i
know.
Last night Maurine organized her interpreter and translator friends to
come over for a potluck and open mic. Our house was filled with
delicious food for the palette and for thought. Wonderful songs
and poetry and great friends.
Today is the 1st Annual Burleson Highs Music Festival and Benefit Bash
right down the street from us. Our amazing neighbors have been
planning this event from the moment they heard about my expensive
health care adventure. I need to haul the PA down the street and
start enjoying the day.
Last week I volunteered at
KatrinaHelpAustin.org.
This amazing bunch of South Austin volunteers is working to match
evacuees with housing possibilities. In the midst of Katrina's
chaos, they're doing such a good job that the Red Cross is referring to
them. Some of the funds from this weekend's house concerts will
turn into CVS gift cards for evacuees so they can buy their own shampoo
and toothbruth and nail clippers.
9/25/05
That was an astonishing Fest down the street. I'm still pinching
myself and writing thank yous and delivering silent auction
items. Tonight we're having the Burleson Highs Music Festival and
Benefit committee members over for dinner so we can celebrate and talk
about next year. In spite of a few dribbles of rain and the
threat of more, between two and three hundred people hung out in Vicki
and Monty's back yard and ate Bennie's fajitas and bid on a
jaw-dropping array of silent auction items and danced to a wide
assortment of great music.
Since then we've had three more heart-warming house concerts:
Ruth Levenstein's on 9/11, Zoe Irene and Stan Van Sandt's on
Constitution Day, and one this last weekend at Amy and Bill Adam's
house. Everyone has been flabbergastingly generous and loving and
supportive.
Here are a few examples:
Diana gave me this. It's for the
NAMI
walk in Austin 10/2, but it totally works for me!
LeeAnn gave me this healing
stone on a holy mountaintop in Arizona.
Zoe Irene sent me home with
this Zuni healing bear fetish.
Susan at
book•woman
put this madonna around my neck and told me the story of a miracle
involving converting a Republican nun.
I'm still the luckiest folksinger I know. Look below for more
evidence: Bulgarian kids singing God Bless the Planet
Earth.
