Friday, February 20, 2009

The Thing with Feathers or the H Word

I was taking a walk with the walker across the room using the arm splints I got from Michelle (my gorgeous PT) to hold myself up. Natta walked behind me to brace me. It was an exhausting and shaky little walk, but it felt great too. I walked past Ronald’s cage and she freaked out. She forgot that her wings are clipped and she kept trying to fly only to fall rather unceremoniously. I said to Natta “She sees me walking so she thinks – well hell, if she can walk, I must be able to fly. We laughed until I almost lost my balance.

Hope is the thing with feathers.

I’ve been thinking and talking a lot about hope lately. With Kaila and her friends, with my doctor and with Jason. With all due respect to President Obama, I’m not a fan of hope. Hope is a kind of passive emotion. We hear about hopes smashed, hopes thwarted but we never say someone made their hope come true. Hope is vague just as luck is indiscriminate. Hope waits around. Hope gets disappointed.

I hate it when people tell me not to give up hope. Of course I won’t – I never had any to begin with. What I have is belief: belief in the science that says for now ALS is incurable and belief that I can have a good life despite this fact. My outlook may not seem optimistic but I am an optimist. My good attitude is not contingent on the medical cavalry rescuing me at the 11th hour. It is unconditional and un-tethered by heavy hope.

The stakes are high. I don’t have time to dick around with hope or despair. Those twin time suckers hang out together all the time. I have time for laughter and joy and sex and music and work and play and children and birds. I have time for water and movies and family and poems and tears. I have time for girlfriends and butterflies and brandy and practical jokes and the internet. There’s simply no time for hope.

Jason was talking about one interpretation of hope – I think it was Jung’s but I’m often wrong – involving Pandora’s Box. All of the evils of the world are unleashed but the box is slammed shut before hope escapes. “Think about it,” he said. “That means hope was one of the evils.”


On another note, my pal Gina is throwing a benefit for me next Friday at The College of Marin. For info call 415-485-9555. Laughs are guaranteed.

On yet another note, I want to be the face for Thick-it ! I fucking love this stuff! It’s a water thickener that makes water nectar consistency but it still tastes JUST like water. When your larynx says “stick it” just try Thick-it. I think I’ll do my own commercial so stay tuned.


Anonymous said...
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Anonymous said...

Your blog today reminds me of my old friend Paul Anderson who used to say hope is dope. It sure is in many ways. What you seem to be having in great gulps is joy. Something a lot more tangible than hope and a lot more real. J

Anonymous said...

i am hoping that you continue this blog
so that all of us
can share in your

i will hold on to that hope
hope that's OK
and i do understand what you
say about

love, love, love from one of your fans

Anonymous said...

CARLA, can you replace my first entry with this one? I fixed some spelling errors. Thanks.

Dear Carla,

You have time to touch many of us. Touch us with moments that can last lifetimes. It is a beauty few people have. You can write something that make us laugh, makes us cry, makes us angry, makes us FEEL. Real living is feeling, whether you are in a wheelchair, ice skates or comfy slippers.

One of the many gifts you give us is when you hit the PUBLISH button on your blog or YouTube. It takes a fraction of a second to click and it give those of use reading a lifetime of feeling love with you.

I have said it have taught me you can love someone that doesn't know can gift people with something as beautiful as words.

Whether you are in your chair, walker or perhaps dreaming of dancing, your spirit travels so much farther than I suspect you imagine.

Thanks you beautiful one for your spending time ANYWAY you wish.

From one of your many "lovers" :-)

Anonymous said...

Love this blog, and glad you like the thick-it! Love, E

Lindsay Meisel said...

Wow. This is great. Reminds me of my favorite professor in college, who used to rant against both hope and happiness as negative, life-denying emotions, because they're contingent upon some external outcome. we're happy because of something, hopeful for something, not experiencing an autopoietic sort of joy in our own being. You're clearly doing the latter, and it's inspiring.

Anonymous said...

Rock on with your walking self!

And Go, Ronald!

Makes me think of that story in "Animals in Translation" about the horse that freaked out when cowboys were on foot because he was only accustomed to seeing cowboys on horseback. The writer compared this to a human seeing someone standing on their hands. She said, (I'm paraphrasing) It's not weird to see someone standing on their hands, but how would you feel if you looked out your window and saw someone walking up your front walk on them?

I love you, Carla. Think about you every single day. Every single day!

Anonymous said...

Carla is in the consciousness of hundreds, perhaps thousands of folks. We don't know. What we do know is she is affecting the lives of many people in ways we may imagine and can safely assume are LIFE AFFIRMING. Carla is a gift to us all.Carla is life.

Anonymous said...

Believing in yourself is the strongest medicine of all.

Anonymous said...

I so happy you enjoyed Frostie dancing! Here is another video that should make you smile! Don't give up hope! Love, Karla and Frostie XOXOXOX