Oct 26 2012 in Caring for Partners by ejourneys
“It’s important for me to go on this journey.”
That’s what my partner told me on Thursday night. I agree with her. I also know that it’s a journey for her alone to take. I can be with her — to assist her in her daily living, be her sounding board, be her emotional support, and (on good days) share the joys we used to share.
Otherwise, I just need to step back and let her navigate her scattered reasoning.
She had her dental appointment on Monday. I spent an hour in the waiting room, noting how the faux brick walls had been stripped down of all but the room’s basic design essentials: a couple of generic seafaring plaques, large and prettily-painted iguana and frog, and one newspaper article about the dental practice. All the other, more personal details, like thank-yous from clients and children’s drawings, had been taken down.
Instead, the practice had added a large TV perpetually tuned to the news, like so many other establishments here. I took out my journal notebook and my MP3 player and retreated from that world for a while.
After her appointment, my partner told me that she had told the dental hygienist about her “brain surgery” MS. (This seems to now be her main topic of conversation.) Not surprisingly, the dental hygienist said she had never heard of such a thing.
“She used to be a nurse,” my partner told me. (I don’t know if this is true.) Therefore, my partner reasons, as a nurse the dental hygienist had “been in on the secret” use of brain surgery to create MS in people.
On Wednesday I called the neurologist’s office, since we still need to get his office notes from three past appointments. My partner got on the other phone and added that she wanted copies of all the phone notes, too, so that she can see what the office staff wrote down based on what she’s been telling them.
And, she said, she wanted the notes of her encounter in the hallway with “Amanda.” Whom she thinks is the neurologist’s daughter.
For months my partner has insisted to me that a woman named Amanda had run up to her in the hallway (while I was in the examining room) to tell her, “Something happened to you early in your childhood.”
The assistant on the phone said, “There’s no one here by that name.” She proceeded to list the names of the people who worked there.
My partner went on to say that the action of “Amanda” — whom she now refers to as “Ms. X” — had been deliberate. That “Ms. X” had wanted to talk to her away from me, so that my partner would feel free to speak up in case I had been abusing her in some way. My partner praised this tactic, which she had seen as being protective toward her.
The assistant said that no one in the office would ever do such a thing.
After the call, my partner told me with a big grin, “Plausible deniability.” Meaning that she still believes the encounter had happened, but that no one in the office would admit to it.
When we had first seen the neurologist in April 2011, he had started by asking my partner questions, and he held up his hand when I tried to clarify something. He had wanted to hear everything from my partner first, from her perspective. Only then did he ask me to tell him my perspective, which in some cases differed considerably from my partner’s. I like that approach very much. He treats both my partner and me with respect.
To my knowledge, the only time my partner was out in the hallway while I stayed behind in the exam room had been while the neurologist studied her gait.
Her latest conclusion is that the hospital where she had stayed in 1982 had not only performed brain surgery on her, but had also performed eye surgery on her.
She had experienced some eye problems (along with shingles) several months prior to her hospitalization then. After her hospitalization, her eyesight had actually improved from her baseline. She had told me this back when we had first gotten together in the mid-90s.
Now she says that she had received eye surgery to help her cry. That her lachrymal glands/tear ducts had to be balanced out with her cerebral spinal fluid. She has decided that her “brain surgery” had not been performed for the purpose of “behavior modification,” as she had been claiming (to help her fit better in society; see this entry), but for the purpose of “cranial hydraulics.”
She reasons that this is why she had been placed in a room with bars on the windows. The bars on the windows had made her cry. That had informed the doctors that their surgery had worked.
Earlier tonight she asked me to look at her eyelid because she wanted to show me the “scar” left over from her “eye surgery.”
She pointed out where it was. I said it looked to me like a regular eyelid wrinkle.
“That’s what they do with cosmetic surgery,” she said. “They make it look like a wrinkle.”
She added she thought that we were fighting now, because I refused to believe what she was telling me.
I asked her, keeping my tone as neutral as I could, “Have I been raising my voice?”
I asked, “Have I been challenging your beliefs?”
I said, “I happen to not believe that the Earth is carried on the back of a giant turtle, but that does not mean I am fighting with people who do believe that.”
She decided then that we were not fighting — but she wanted me to believe her because it would help her write her letter to the hospital asking for all of their records (beyond the 300+ pages we already have from them) and “the truth” as she sees it.
I said I couldn’t do that.
She read a passage to me from Nicola Griffith’s novel Slow River, something about a character being dragged where the character didn’t want to go. She’s been reading Griffith’s books because Griffith has MS.
She asked me if I felt I was being dragged to places where I didn’t want to go.
I said I have learned to live one minute at a time, and that the only thing I can control is my reaction to events, including events over which I have no control.
She asked me to dictate my answer to her, so that she could write it down on an index card. I wrote it down on the card instead.
If her current theory is anything like her obsession with the effects of the Haldol she had received in the hospital (which she had blamed for her MS months ago), it will run its course until her next theory pops up. Then again, that could take years. The way I see it, it’s not the theories themselves but what’s behind the theories that she’s grappling with. To me that means her emotional upheavals combined with her cognitive dysfunction.
She saw the podiatrist this afternoon. He has her back on oral antibiotics because her toe is not drying out properly. I suspect that has much to do with how she’s been bandaging it. She’s been using extra tape to make up for the less-than-perfect (in her eyes) band-aids she had finally decided on, after spending a half hour or more in the band-aid aisle last Sunday.
I told the podiatrist I thought maybe the wound wasn’t able to breathe as it should. He agreed with me. My partner argued that the tape she used was breathable tape.
We’re now back to using gauze.
I have yet to take photos, but depending on how her muscles feel, my partner is now alternating between using her cut-up toe separator (a real toe separator, bought at the big mall after her dental appointment) and a rock set in the saline solution. The rock (used for years as a paperweight) now gets heated up with the water.
Mixing in the salt and stirring until it dissolves around the rock in the Pyrex dish gives the whole procedure the feel of a Zen garden.
My partner is still using her fifth burner, blocks of stabilizing wood, and Pyrex dish (now with rock!) because she didn’t like any of the four foot baths we looked at when we were in the big mall. None of them lets her regulate the heat of the water; she can only turn heat on or off. Big Kudos to the store manager who was very, very patient with us and who truly went above and beyond the call of duty.
I’ve been catching up on sleep, but I’m now also dealing with a fullblown head cold. It adds an extra layer of numbness to dealing with what I’ve come to think of as the alternate universe my partner lives in.