Nov 23 2012 in Caring for Partners by ejourneys
Today one of Jane’s Facebook posts (one in a terrific series she’s doing for PH Awareness Month) inspired me to do some Web sleuthing. I found a support group for people with MS and for their families that meets just a few miles from where we live.
I am so there!
My partner was asleep when I learned about it. I bit my tongue when she awoke, telling myself, Wait until she’s had enough food. Wait until she’s comfortable. Wait until all her basic needs are met.
For one thing, I had no idea how she would respond, given the way she views her diagnosis (i.e., as something that had been deliberately done to her through “brain surgery” and as a cover-up by the AMA). She had dismissed my suggestion that she could contact MS support groups online.
I had no idea how she would respond to the thought of my going to a meeting, with or without her. Three years ago, when one of her therapists suggested we watch the show Hoarders, I jumped at the chance. I wanted to understand my partner’s behavior better. She, on the other hand, not only didn’t want to watch the show, she didn’t want me to watch it, either. During the one show that she did watch, she had defended the hoarder.
Indeed, I had learned things.
Likewise, for over a year now she has bandied about the recommendation, made by three therapists, that she go to our local ICCD Clubhouse. She leans away from the idea, then leans toward it, back and forth. Currently she is dealing with her fear that if she goes to the Clubhouse they will find a way to force her back into the hospital and force meds and more “brain surgery” on her.
When she leans toward the idea, she views the Clubhouse as a kind of Soteria and as a way for her to get a job.
Then she says she would have a limited choice of jobs, and that they’re not meant to be permanent positions, so why try?
It all has taught me to support her by being her sounding board and by offering the occasional bit of information, since the Clubhouse is a gathering place. If people just want to hang out there, they can. But I have learned not to become emotionally invested in what she says. For me, her monologues are like volcanoes. They have periods of quiet and periods of eruption, but they are just what one sees on the surface.
The real action takes place in the tectonic shifts far below, where no one can see them — not me, not her therapists, and probably not her, either. Over the past year especially, I have focused on giving her the time and a safe space to let those shifts occur.
After she was awake for a while this afternoon, I told her to let me know when she was well fed and comfy. She had already started eating and wanted to know what I wanted to say. I told her it might be a bit emotionally intense for her.
She asked me if her mother had died.
“No,” I said. “This is good news.”
She wanted to know, so I told her about the MS support group.
To my surprise and delight, she said she wants to go! Yay! At least, as of the late afternoon on Friday, November 23, 2012.
I got a mental image of her lecturing everyone there about the big AMA cover-up of its MS “brain surgery.” I tell myself, It doesn’t matter. Live in the moment. As with the Clubhouse, my partner’s views of the MS support group could shift back and forth. Or not.
“In a minute there is time / For decisions and revisions which a minute will reverse.” — T.S. Eliot, in his poem “The Love Song of J. Alfred Prufrock.” Fits my partner to a T.
I was also cautious because of her sensitivities on Thanksgiving. I know not to speak when I enter the room she’s in, but to knock softly on our storage system’s PVC pipe to let her know I’m there. This gets more complicated if she’s wearing earplugs, which she does when she doesn’t want to hear any traffic sounds from outside the house. It can also be complicated if she’s positioned, as she often is, in front of the entrance to the kitchen.
When I knocked this time, she growled and flailed, kicking against the carpet. She was very upset with me. She had just taken a mouthful of an energy bar, which she eats with oat bran. She scolded me that she could have spewed the oat bran all over the carpet (she sits or lies down on the floor, since she doesn’t like chairs) and that it would be a mess to clean up.
I never know what her sensitivity level will be, day to day. This particular response was new. She seems much better today.
What I do know is that, barring any unforeseen complications, I’m going to the MS support group meeting. The group meets the first Saturday of the month. I’ve marked my calendar and will call the coordinator.
A great part of my joy and relief comes from the hope that I can speak openly within our community and bond in person with people who are in a similar position to ours — and maybe ease our isolation just a bit. The more I can speak without fear of betraying my partner, the more I can get involved.
I feel a little like this Great Egret, which I photographed two years ago.