Saturday, April 18, 2009

Ac-cen-tu-ate the Positive

Dear Friends,

I can’t sing. My speech isn’t clear enough to do any kind of reliable performing. I can’t walk across the room or do a Rockette dance kick and my “jazz hands” are a disgrace to performers everywhere. I used to be a performer and now it taxes me to sit in the audience for a whole show. It’s hard as hell to write even this much.

Here is how you can help: Open your arms wide and breathe in the beautiful fucking miracle of your brief existence here alongside the hummingbirds, the butterflies and Johnny Depp. Let your life be the raucous party it wants to be and don’t worry about god calling the cops. I still refuse to believe any god worth a damn is a buzz kill. Stand on your fabulous legs and give your ass a sassy wiggle. Dance, sing, laugh and make-out frequently.

I will join you, and as you can see from the video below, I’ll do the best with what I’ve got. This video, by the way, is a gift from me to you with much, much love.


P.S. Listen carefully to the lyrics, sung by my gal, Aretha.

Wednesday, April 15, 2009

Happy Birthday Jack Smith

Today my Dad turns 70 and this is all I can think to give him – a public tribute to a private guy who ALWAYS puts himself before others. The other day, my son had moist eyes as he talked about his “Papa.” He talked about how sad he was that the kindest and most decent man he knew had lost his Mother as a teen and now soon will lose his daughter and watch his grandson repeat history. ”He deserves better,” said Mac.

Yes he does.

My Dad was my hero. I would walk to his bus in the evening for the great joy of being able to hold his hand and tell him about school that day. From him I learned the secret to making your child feel safe you: always and without exception be patient and kind to the best of your ability. Remember that you’re the parent and as such your needs are not supposed to come first – your kids’ needs do. Accept the kid you have and don’t criticize or try to change them into your fantasy child.

I lived with my Dad when my parents split. When it was time for college, my Dad girded his loins and told me I should get a birth control device for the dorm. Months later on a visit when having a quiet moment after being introduced to my new boyfriend, my Dad asked me :”So, are you using that gizmo?” meaning my diaghragm. I adored him at that moment. He was the parent so he met me where I was at, in the best way he knew how. As you can see from the intoxicated picture below, this wasn't always easy.

At age 11, I watched in terror as my dad ran towards a stranger’s rolled car which could have burst into flames at any moment and pulled all the passengers to safety. The other Dad in our party went to a nearby house to call for help but not before telling me “Your Dad is crazy, that thing could blow.” We left the accident once the people were safe but they never forgot him and years later tracked him down to say thanks.

Outside the audition room at New England Conservatory where my dad had brought me, I cried as I listened to the other singers who I deemed far better, thus making our trip a waste of time and money. Dad said to me “ You have a problem. All these schools are going to want you and you’re going to have to pick.” I nailed the audition and got into one of the best music schools in the country.

As a toddler, and later as a child, I would pad into my parents’ room at night after a bad dream, a sore tummy or growing pains and my mother would mutter through closed eyes “Talk to your father.” And he would always get up, never complain, rub my cramped legs or stay with me until I fell asleep. Soon I learned to go directly to him. Some nights I would wake up sobbing from nightmares that he had died – the most unthinkable thing in my young life.

There are too many stories - buying the world’s ugliest sofa at a fundraising auction then upon seeing it saying “ hmmm, I must have been drunker than I thought,” shortcuts on hikes that ended up being all day Bataan death marches, post-its on my pillow reading “Goodnight Sweet Princess,” endless hours on the beach turning rocks over, impersonating Donald Sutherland – I could go on but I am typing this with one loving finger.

My Dad was playing basketball with a grandson when a bear ambled by. “What do we do?” asked the boy. “Nothing” said my Dad. “He’s not interested in us.” Then my Dad’s dog Bailey appeared and my Dad ran over and swooped the dog up into his arms and to safety. When he was understandably questioned about his priorities, my Dad said “Well, I have 10 grandchildren, but I only have one dog.”

I only have one Dad – a man of integrity, kindness and humor. A man who is willing to give anything and everything – even mortgage his house if it comes to that – to help me. A man who would gladly trade places with me. A man who loves me more than anyone else ever has.

Happy Birthday Dad. I’m so damned proud to be your daughter.

Monday, April 13, 2009

Overdue blog about a lot of stuff

My new strategy with writing this blog is to train the voice recognition software before every attempt to use it. So far, the downside is that it is still only about 50% accurate and by the time I start the blog, I am already out of breath and mushy-tongued.

This blog is my lifeline, and you, dear Muselings, the rescue team holding the rope. I pledge to write at least two blogs, per month while I can, more if I can figure out a way.

I confirmed today that thanks to Wendy, I will see my brother, sister-in-love and the two adorables next month. I leave on the day Mac finds out if he got into Berkeley so pray for good news. That kid is due something good.

I was talking to Edith about anger. I have been finding myself irritated by a lot of seemingly unimportant things, which, if you are in my situation are actually not at all unimportant. For example: if someone puts my breathing machine together incorrectly, it fucks up my nap. If someone puts something away out of my reach, I can’t get it. If someone opens a window and forgets to close it, I am cold. A simple solution might be to have someone here every hour of the day to take care of those things, but I cling to my last bits of solitude and I won't let go of them until this cocksucking disease forces my feeble hand.

Edith wondered aloud if perhaps I was not angry at these things, but at ALS. I thought she might be right for about three days, but the more I think about it the more I feel that anger is not the right word for what I’m feeling. It's grief. I am finally at a point where I can no longer console myself by saying "oh well, I can’t (insert activity here) but I can still (insert activity here). Truthfully, I can’t do shit.

But I’m not angry. I have no need for that. I’m grief-stricken, but not just for me. Now and then, I correspond with other people who have ALS. People dealing with worse financial worries. People with more advanced symptoms. People more accomplished (no really) and who have contributed more in their field. None of us were chosen for this for any particular reason, we just drew the short straw. I grieve the losses we’ve all sustained but free floating anger is not the answer. It can’t be. I’ve sat and sat with this and I believe it. Anger can’t be the answer.

The thing is, I’m alive and I laugh every day. A guy I knew died yesterday of lung cancer. His name was Ron Stallings and he was this radiant, gentle soul who could always make you feel like the only person in the room. He played tenor sax and he played it well. He played it warmly and full of love and when he played I marveled that his horn sounded like an expression of his deep, sweet brown eyes. We didn’t get to play much together since I was, for a long time, married to another tenor player, but when I saw him, or heard him play, I felt good. Although he was ill, he was one of the many lovely musicians who donated their time for one of my benefits. Another musician I know once said of the passing of his mom “ I feel like there’s one less color in the world.” That’s how Ron’s passing feels.

So it’s hard to be angry, you see, because I’m still here. That being said, I want shit done right, get pissed off when it isn’t and get terrified for the future when I can’t speak or type my needs and preferences. And sometimes this all just sucks too hard.

And then other times it’s too much fun and I laugh until I gasp for breath like when Kris came up with the concept for “ALS Barbie.’ Think of all the accessories! I imagine pulling a string on her back and hearing a slurring voice say “ I hope I can poop today!” or “Silly me, I dropped my fork again!” or "Just my luck - Nurse Ken is gay!" The voice could slur worse each time you pulled the string. And I won’t even tell you the lyrics to ALS Barbie’s theme song. Somebody call Mattel!

But back to anger. (What?! You think there’s anger in those jokes???) In the last year or so I’ve had some amazing moments with amazing friends and some of the most intense and real of those moments have been with Edith (or “Central Control” as Linda calls her) performing her emotional angioplasty on my heart. I’m truly grateful that she helps me “go there.”

Words will never convey how much I adore her.

The other half of Central Control is Kathy, whose fierce love knows no (sane) boundaries. Even on her birthday, she is shopping for me and hand-grinding vitamins for fear I might choke on them. Kathy is the modern day Cassandra – who was cursed by Apollo with the gift of dire predictions that no one believed. She can foresee such horrible things, they should give her prognostications their own word like: “Kathastrophy” or “Kathamity.” When Kathy gives a disapproving glance I’m proud of myself for not wetting my pants in fear, though I’m sure many have felt that warm liquid sloshing in their shoes after crossing her. If they are lucky, they’ve also experienced her delicately chopped fruit festively displayed on a tie-died napkin, her willingness to brush someone else’s teeth, her gentle touch as she administers a hand massage or her determination to befriend a one-woman bird.

My son marvels at her with a grin on his face when she shows up with a funny t-shirt and sushi for him right before her birthday. She (and the other generals) are generosity incarnate.

Kathy’s birthday was this past Friday - finally, I understand why they call it Good.

Saturday, April 04, 2009

Centraal Station Antwerpen gaat uit zijn dak!

From my friend Joanna :
This overwhelmed me - watch it all the way- it made me cry just knowing how we all want to be joyful and shed these technology--numbed skins.