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.