Wednesday, July 22, 2009

Check it out - 2 Blogs in 1 Week!

I thought I would be embarrassed the other day. I was wheeling around downtown Berkeley and suddenly and inexplicably I started to cry and I was seriously considering being embarrassed, but Harry Potter’s cloak of invisibility has nothing on a wheelchair. I swear, it’s amazing how nobody notices you if you’re a person alone in a wheelchair. So I just relaxed and let myself cry. It was a nice feeling.

One of the things that makes me luckier than most people is that I have a shitty memory for certain things. Like today, I couldn’t get my jeans button unbuttoned, and I was alone and I didn’t know how I was going to get my pants off, and I was trying to remember if I was ever able to use my left hand to unbutton my jeans, like ever in my life. And I could not visualize unbuttoning my jeans one-handed. I don’t know if that means that people don’t unbutton their jeans left-handed, or if I’ve just forgotten how to do these things so thoroughly. There are all kinds of things that I’ve forgotten, as though I was never able to do them, and I think that’s really a lucky thing. I don’t spend a lot of time bemoaning things that I’ve lost. OK, I spend a little time, but not that much.

On another note: I’m not one to brag, but I can now wipe my own ass. Just saying.

Poor Moira was typing blogs for me. She is so genteel and I am…not. I showed her my business card which I ordered to replace the one that said : Carla Zilbersmith – Good Singer. It made me too sad to give that one out so I got some saying: Carla Zilbersmith - Dying Woman. Moira who is far subtler than I said, “It should say Carla Zilbersmith – Femme Fatale.” Of course it should. That’s better on so many levels.

Moira is from another era. She arrived here in a time machine and I can only imagine that she switched places with some hapless soul born in 1962 who is stuck in the early 1900s, wondering when Twitter will be invented, why no one but Jack the Ripper will fuck her and what people have against the terms “douche bag” and “cock block.” Meanwhile, Moira wanders around the newsroom of her paper, armed only with a parasol, exclaiming “oh my” (and I’m pretty sure I heard a “my word”) while she wonders why her colleagues call her “dainty.”

I went to my friend Alison’s wedding last weekend, and she was a radiant and beautiful bride. Her hair looked great, her dress looked lovely, and I said a silent prayer of thanks to the gods that she heeded my advice and gotten a good bra, because it really made all the difference in the world to the dress. She has some big, beautiful girls and they deserve to be treated right! Her now-husband’s quiet, tender devotion to Alison made me cry. It was really lovely. [If you're reading this blog a second time, I have deleted an amusing story, in deference to a dear friend of mine. I don't regret telling the story, because that's what I do, but my friendship with this lovely woman is more important.]

Unfortunately I wasn’t able to handle staying for the wedding reception. I marvel at the fact that I, former wild woman/extrovert/party animal/big crowd lover, am almost paralyzed with anxiety when I’m in a big crowd. It becomes almost impossible to breathe. I start shaking. It’s crazy. But that’s how it is. And I have not got a bad enough memory to remember being the person that reveled in parties.

I was telling Barbara today that words have defined me -- either the written word or the spoken word -- for my entire life, and words are slowly being taken away from me. First I couldn’t act out words, then I couldn’t sing them. It’s harder and harder to type them, and late in the afternoon, difficult for people to understand me when I speak them. But I can still listen to them. And I’m hoping that I can reshape the way that I’m friends with people, so that they can feel comfortable just offering me their words or reading the words of others to me and not feel weird if I don’t reciprocate. Maybe I’ve talked so much in my lifetime that I used up all my words. (Moira, who is typing this, just said to me, “You don’t talk as much as some people.” Which could be interpreted as “You don’t smell as bad as some people.” OK. I concede that while I don’t hold the land speed record for talking, I love to talk. A whole fucking lot.)

I wonder if the reason I was crying as I wheeled around Berkeley was that I saw all the college students and I saw all the school supplies being sold, and I was reminded that Mac will be leaving soon. I fucking adore him. I know every parent goes through this, or, you know, most parents go through this (some parents probably wish they could go through this when their 40-year-old kids don’t move out, you know who you are, 40 yr old slacker.). But this feels a little more permanent. Mac and I will have our occasional weekends together and maybe a summer together, but not enough.

At least I will have left him lots and lots of words.


Anonymous said...

I feel for you as a mother whose child is going away to is a huge transition for both of you. Right now the transition may feel impossible to make: for you, to have him so far away, for him, to be on his own for the very first time. I went through this 2 years prepared, that last hug and goodbye as they go off into the collegiate sunset is a dramatic one. For you, a huge letting go lesson, probably the biggest one to date. For your son, the continuation of his brilliant life. It's a hard one, but you'll be okay as soon as you know he's okay. Our children are so strong and able. What a blessing to experience this wonderful event in life. Job well done for both of you. Stay strong and rejoice. P.S. I love your f-bombs, so colorful!

Anonymous said...

let moira keep typing
and you keep talking
it does us all real good..

Anonymous said...

you and Mac are two of the bravest souls I know.

Anonymous said...


When you cry we all cry...AND YET we all continue to love you with amazing qualities of energy.

BTW, I laugh when I think Mac is going off to uni. Even if you are in a look too young to have a college-age son!


Leah S. said...

OK I've now asked eleventy seven friends and no one can unbutton their jeans with one hand, myself included.
For your amusement: the guy who matched your description at my wedding ("short and not particularly attractive and much too old, but they still think they’ve got a crack at the younger cuties.")was my father. Divorced from Mom, both at the wedding.She and I and her plain clothes nurse came around the corner and there's Dad coming on to the beautiful redhaired young rabbi. Her Holiness handled it a hell of a lot better than me, Mom & the nurse.

Anonymous said...

Hi Sweet Girl,

Having gone through the college leave-taking you have my complete sympathy. When my oldest (it gets easier with the others) left to attend UCLA (2 hours from home)I cried all the way home and then on and off for the next two weeks. Finally, my youngest son looked at me and said, "He didn't die." It finally brought me around and I made it through the year. You will be surprised how quickly the year goes by. My daugther went next, also, to UCLA and that was much easier because her brother was there to watch out for her. When it was time for the "baby" he went off to Notre Dame alone, knowing no one and not ever having seen the campus. I was a mess again but it all turned out well and, though you will miss him, you will be fine too. Your bond is so secure that he will be with you each and every day. Remember I am here for him if he ever needs anything.

Love, Pat

Anonymous said...

Thank you, Carla, for helping Alison to choose a wedding dress that suited her so perfectly! Did you know that her (our) mother's wedding dress was the very same color? She wore it not only to her own wedding, but then to each of our first weddings, and to our brother's second wedding, which occurred just 2 weeks before her death.
And your suggestion of a good bra was seconded, I am certain, by our grandmother, from the bottom of her grave.
I am glad that you could be a part of Alison's very special day, and that I had the opportunity to meet you, if only briefly.
Emily (Alison's sister)

Anonymous said...

Dear Carla,
I loved hearing about Alison's wedding and the "frisky" rabbi portending for a lively sex life. However, I know that frisky rabbi pretty well, having worked closely with him for almost 10 years, and I can tell you with almost 100% certainty that he is happily partnered (with a wheelchair bound lovely woman) and does not possess the character or wherewithal to hit on young women attendees of weddings at which is officiating (or even not officiating). He is a sweetheart, quite humble, and quite unlikely to exhibit such behaviors.Perhaps you mistook his friendly nature for something other than what it was?
I love you, Carla, and forgive you for what may have been a misperception.

Carla Zilbersmith said...

Thanks for setting me straight, Sasha,
I did include myself among the frisky clergy but i can see how what I said could be misconstrued and I forgot that some of Ali's temple friends might read this. I only meant to share a chuckle over a funny scene and not to offend. i really do love men - excessively flirty, flirty or not. You express yourself with a level of diplomacy and grace I can only hope to attain in my next life.

Anonymous said...

hey c,
so as we spend our afternoons together, forgive me as I struggle to find the words to the stories of my life to report back to you instead - I'm so used to my role as listener/fellow conspirer/receptor of your funny stories & thoughts. honestly, just being with you is enough! see you soon! wen xo

Anonymous said...

Hey lady,
2 things:
1. In response to this piece, I've noticed that people in wheelchairs are no longer invisible to me (if they were, I don't know) -- I see them now, so just watch out! Because of us devoted Muselings, you may not be as invisible as you once thought. But we love your tears so don't stop on our account.

2. I'm having the same party experience as you are -- all of a sudden, I, Extrovert Central, completely and utterly (and not prettily) hit the wall and must leave right away. (Jason? He's always ready to go home!) Part of it's physical exhaustion for you and me, probably, but I'm wondering if it has to do with having such intense inner emotional experiences going on all the time with our diseases that it's hard to be in the world where people aren't having the same type of internal dialogues? I feel such a push=pull about groups and parties: I want to participate, but I can't handle it, and I think for me at least, this is the reason why. I look at all these "normal" people talking kindly, interestingly, funnily to me and with me and think to myself, "You probably haven't thought about cancer in the last 5 minutes while we're joking here, and yet, for me, it's never far from my mind..." Feels lonely, surreal, strange to live inside my head and outside in the world. I guess that's why it's such a strain.

Don't know, obviously, if its the same for you, but thanks for helping me figure this out.

Warren Schiffer said...

Hi Carla,
I am so glad that your friend Jeannine is close friends with Stephanie, whom I met on Thursday at 35,000 feet. It was that chance meeting that introduced me to you. My name is Warren and I have an intimacy with ALS that makes your words ring with the sound of a thousand giant bells. I hope you take some comfort in knowing that there are those of us out there who will not rest until this horrible disease is cured. Your movie is extraordinary, almost as much as you are. Your relationship with your son brings tears to my eyes, as it is so special, filled with love, humor, and respect. I will be thinking of you, as well as getting your blog and movie links out on twitter.
If you or Mac ever want to vent, talk, or connect, I would be honored to do so. wjschiffer (at) yahoo (dot) com. My name is linked to my site, which will answer any questions about my involvement with ALS.
Finally, you are a shining example of living with ALS, not dying from it.
All my best,

Anonymous said...

Anonymous said...

Crying people are invisible, too, so you had double the invisibility cloak.


Unknown said...

I believe you directed my daughter in Wizard of Oz at COM about 6 years ago. She was Dorothy. It was a wonderful show. But what you don't know is that she was going through some hard times then and this show was a god-send. So just want to say thank you for what you did for her. Love your blog and mostly your courage.

Anonymous said...

Time to say I send you love and strength...again and always


Anonymous said...

We have today if we are lucky. That is all we have. You have helped me stay in the present and realize what a gift that genuinely is. Joanna