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.