I was getting off the bus this afternoon. The driver had parked by a steep driveway. The ramp is also steep. My chair got trapped in the valley between the two slopes. I am sitting at an angle for 20-25 minutes, unable to move up or down, in the cold. People get off the bus, pissed that I'm holding them up but not inclined to help. Finally I call Kathy who lives nearby and just hearing her voice makes the tears spring to my eyes and I have to blink hard to stop from making a spectacle of myself, plus I have trouble talking after I cry - I seem to literally drown in my own tears. SO my acupuncturist shows up at the same time as Kathy and her giant son Eric and they unwedge me and off I go to get needles stuck in me.
Watched Cadillac Records that night with Gerry and that's when the tears hit. My first music movie as a former singer. God I love singing and I used to be able to do everything Beyonce was doing vocally in that film. Now i hang on to a tune for dear life. I cried through the credits. I cried until the place was all clean for the next show. Gerry was a rock solid friend and just held me and let me cry. I told him that sometimes I don't feel big enough to hold all of this.
And now I avoid going to bed as long as I can because tomorrow I have to get up and start again, like Sisyphus rolling that damned rock up the hill, I have to find my way back to the place I love to be - the place of gratitude and acceptance of this cocksucking disease.
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About Me
- Carla Zilbersmith
- I used to be a solo performer, singer, writer, director, actor and college teacher. Now I have ALS so all that's left is writing. I'm curious. I have an amazing son named Mac who is 16 and wise beyond MY years and who tells me I'm good looking for someone who is dying and old which is worse than saying nothing but i still love it. I am playful and I love life more than I can express.
17 comments:
You deserve so much better and you deserve balance in your life.
Carla and accupuncture, it brings new meaning to the expression "pin-up girl."
Like all Muselings, I want so much for you Carla to have every ounce of independence possible and to receive every kindness imaginable. It is a bitter pill to be reminded there is in this world unnecessary rotteness mixed in with the grace, unbelieveable hard-heartedness mixed in with the compassion and generosity. As heart breaking as it is to read, thank you for being real with us. These last two entries are a huge eye opener about what it really means to try and move around and be safe in wheelchair. I think there may now be an army of angel Muselings on the lookout for the well being of people in wheelchairs.
Love,
stephanie
I don't get what is with these bus drivers - I find the problems you have had with the transit system is unforgiveable. All passengers in wheelchairs are supposed to be safely put onto the sidewalk before anyone else leaves the bus. San Fransico get with the rest of the world.
Huge hugs to you. Thank you for sharing your life with us. You open my eyes to realities I have been unconscious of...
xoxo
C
My mom dated a guy who would fall over in his wheelchair in restaurants when he was bored because he liked to watch people freak out. I think he had a couple other ways to entertain himself that utilized the discomfort able-bodied people feel around wheelchairs, but I can't think of them.
He also made a point to create an ENORMOUS scene when bathrooms weren't wheelchair accessible. Even if he didn't need to use one, he'd make sure they were accessible.
I was glad he was up for the fight, because most people aren't.
Carla,
I hope that you and Mac follow thru with a complaint with the transit system. There has to be a better way of taking care of people with additional needs in a much more professional way. Maybe they need to hire someone to assess how they handle these types of things and train the heck out of people.
Hang in there baby! We cry with you when things like this happen to you.
One of your Muselings
The image of you stuck and nobody even offering to help breaks my heart! When I used the red scooter at work last spring it was just enough to get a tiny taste of what it's like being below everyone else's line of sight and unable to do for myself. Only once did I venture out into the street and it was unnerving to feel so low and vulnerable and wonder if the cars would even see me crossing the street. It was a glimpse into a world I knew very little about, but appreciate so much more now.
All I can say is, you're due for one whopper of a loving positive experience to counteract the last couple of days. I know it's coming. I hope it's already arrived! KK
Hi Sweet Girl,
I can't imagine why you are having to face all this hardship in the past couple of days. I, being a Polly Ana type, think it must be to make your Muselings sit up and take notice so that we can "pay it forward." I know we will all be more aware of the handicapped and will make more of an effort to help those who are in need. What a blessing you are to all of us, what lessons we have learned, and what a gift it is to be able to read you and to laugh and cry with you and Maclen.
Love, Pat H
I am with Pat H on this one. I will pay it forward all I can.... my first reaction was to come down to the bay area and kick some transit butt...
I am sending light and kindness your way...I wish I could move mountains and worlds for you...and give you a river to skate away on.
your faithful museling,
maggie
Thank you soo much for being so real...I so admire your bravery for still being in the world showing us muselings that the disease is just your body and not you...I too will pay it forward from here on out. Wow thanks for the wake up call...Maureen
http://www.youtube.com/watch?v=6v8_BnZSBQo&feature=related
http://www.youtube.com/watch?v=n-3IT4TeSxY
http://www.youtube.com/watch?v=XLHRs4GsffI&feature=related
these are from that film "Young at Heart" about that chorus of seniors who travel around doing concerts. I don't know if you've seen the movie, but it's hugely rich and bittersweet. :(
I love you.
Kim
Carla - I'm so sorry this happened. I can't believe no one helped you. I think there should be a button on your chair that brings ass kicking to your side. Someone needs to invent a transporter; I would have transported to your side and helped you and snapped at all those idiots.
Also that feeling of Sisyphus - ah. How I wish that each of your friends could take on what you are going through, each of us one day out of the year (because I am sure you have at least 365 friends if not a ton more, or whatever the going rate is for how many days are in a year).
As I write this, there is a full moon outside (the biggest they say in 15 years), and I can hear the ocean thundering outside my window. Life has become for me about these moments; this moment, then the next moment, then the next moment. Like breathing. Appreciating every little moment. This is a gift you have helped give to me.
I hope that the next few days are wonderful ones for you, that give you your butterfly wings, so that it isn't about rolling that damn stone, but having some moments of happiness.
Laura D
When I was squiring my aunt around I too was appalled at "what it really means to try and move around and be safe in wheelchair". Even so-called 'accessible' bathrooms were often a joke, I needed six arms to manage door, chair, aunt, while still allowing her some measure of privacy and dignity. Thank you for bringing your joy and sass to each moment of life, even the heartbreaking ones. Echoing so many, we laugh and cry with you and love you to bits.
~ Francia
Carla,
I think it's worth publishing the date, time, and bus number so as many of us as possible can write and complain about the despicable behavior of 'our' service providers. It's time for a wake-up call! --And then there's all of the complacent passengers who need a V8 moment (the head slapping part at the very least). Letters to newspaper editors may reach some of them.
Peace!
--Linda
Sorry to be responding so late to this. One time when I went to hear Elisabeth Kubler-Ross speak she said that people had misinterpreted her stages of grief/death (denial, anger, bargaining, acceptance--I'm forgetting one) to mean that one goes through these stages in a linear fashion. Whereas she saw these stages as one's that one moves in and out of (more like a spiral and not "a to z"). My hope for you is to give yourself permission to feel whatever you feel and whenever even if it means that you do not always feel gratitude & acceptance.
Love, Billie
I suggest that the next time you are let off the bus in such a manner that you cannot actually safely exit the bus that you call 911 and ask to have the driver arrested.
I have a sister who uses a walker so accessability issues are paramount for us. She is also developmentally disabled so needs guidance in maneuvering. It is remarkable how different people can be -- some show great kindness, some not.
Just as your friends and care takers show great kindness, love, and humor to you, you share your kindness, love, and humor with them. We out here receive your kindness, love, and humor, as well. It is a gift and I thank you.
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