I don’t have a lot to say, and I have too much to say, and I’m sick, and I’m sick of myself – and so very tired of this messed up year. There’s no news about Jonah’s move. We don’t even have a transition plan yet, or a caseworker. At least Andy and I were able to tour the house and see Jonah’s bedroom and the space where he’ll be living. A month ago they told us the house would be open in 6 weeks but I’m not sure what that means for Boo. We wanted him to be one of the first to move in and I need to contact OPWDD to ask for an update. Life keeps getting in the way, though, with challenges and unrelenting loss and sadness.
One bright spot was the annual Dutchess County Fair; for the third year in a row, I met Jonah, his friends, and the staff to enjoy the rides and animals and food. This year we were even able to visit the cows without embarrassing incident. Jonah was content to have his picture taken next to them and mooooove on.
Also, it was a blessedly cool day and we stayed with the group, which made it a lot easier and less stressful. I wish I hadn’t persuaded him to get on the rides, though. As soon as we were settled on the Ferris wheel, he grabbed each of my hands in his and told me “it’s okay. It’s okay. It’s okay.” I smiled at him and said “yes, bunny, it IS okay” – but I felt bad. He bravely endured the brief spin, but after that I didn’t encourage him to ride anything else.
The only ride he seemed to truly enjoy was the bumper cars, both of us in one car so I could brake and help him steer. It will probably be the last time we go to the Dutchess County Fair together. Maybe the Saratoga County Fair next year? We won’t have a group of caregivers to help us, so it may not be possible.
I don’t know what, exactly, will be possible for Boo in this new house, in this new life. He’ll be losing so many people, so many things.
I’ve lost so many people this year, too – and am about to lose yet another, my friend Laurie, who has been through so much suffering and is now nearing the end of her life. I want to call Father Noone to talk about it. I want to call my sister. Ironically, the people I most want to talk to about it are the ones who are dead. I even want to call my mother, now two years gone – “mommy,” I want to cry, like a lost little girl. It’s hard not to keep everyone left at arm’s length in an attempt to prevent the pain of more loss, though I know that’s not the solution.
I think of this poem I read in class during my days as an English major at SUNY Oneonta.
One Art
By Elizabeth Bishop
The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.
I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.
—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.
It does look like disaster right now, and yet I understand what she is saying. I understand it so much more from the perspective of middle age than I did at 20. You reach a point where it all becomes a normalcy. I lost the ability to eat what I want without consequence, then to look 10 years younger without even trying…to look around me and see the same loved ones at every holiday gathering, to count on friends and family being there year after year. To enjoy a certain level of wellness, to depend on an easy bounce-back from injury or illness or sleepless night.
There is no longer the comfortable assumption of a generation between myself and death. Relativity is real, and everything speeds up in direct proportion to one’s age. It’s a humbling thing. My father will be 87 this year, and when I talk to him every morning he tells these truths as well. Most of the friends and relatives from his “silent” generation are gone. He seems to have mastered the art of losing, though I know there are days he struggles to accept it.
As for Boo, I will fight the losing. He’s just 23, a young man with a future I can attempt to fill with all the things he loves. I can do my best to make his life a little better at every turn and through every change. In the meantime I can practice, like Elizabeth Bishop says, “losing farther, losing faster: places and names” – for it won’t let up, not for any of us, and we have to carry on.
I can remove my focus from the losing and place it on gratitude for all the things and people I still have. I can join Rock Voices again, and even though I won’t have my friend Laurie with me, I know she’ll somehow be there with me anyway. I’ll hear her singing and laughing next to me. I know I can. I’ve got to. The alternative is sinking into depression, and that, my friends, is something I really do not want to do.
Have a blessed, beautiful beginning of autumn, everyone. I’ll be back soon!
The Never Normal 