Last fall, my partner called me to come take a picture.
She had captured a small snake in the room she uses as her office. To get there, I navigated the narrow walkway between piles of her hoarded paper, boxes of books on the floor, scattered folders, and food wrappers she insisted on licking clean before they got recycled.
(The therapist she had seen several years ago had recommended that we both watch the A&E show Hoarders. It enlightened me. My partner didn’t want to watch it, and she didn’t want me to watch it either, because she had seen it as another form of nagging. Another form of pressure, another thing to stress her out. She had managed to view a couple of episodes, and in one case had staunchly defended the hoarder.)
The snake was a tiny thing, and it was fast. But so was my partner. I was ready with my camera when she lifted one of the many plastic take-out containers she’d saved. The snake ribboned across 31-year-old carpeting that used to be green, but sunlight had bleached the carpet to yellow-orange. She recaptured the snake before it vanished inside a pile of clutter.
(No sunlight bleaches the visible carpet further, because she has covered up all the windows.)
She held the container against cardboard while I moved aside a contraption she had made of a wood board, a crutch, and a blanket that she uses to block the front door. She wants to block any airflow that can come through the cracks. The crutch must face a certain way; she has indicated how by attaching the sheet from an old calendar — a beautiful picture of a canyon — on the side she wants facing out from the blanket.
She gets upset whenever I leave the blanket off the door. She does not realize that it could hinder our escape in case of fire, yet she is very conscientious about our smoke alarm. Is it blinking the way it should? Does the battery need replacing?
During one of her hospitalizations in 2009 I had cleared the space by the front door of metal, wood, and other debris that she had picked up off the street. She kept insisting she would find a use for them. So far, at least, the space by the front door has remained clear.
After I got the front door open, she freed the snake into our hedge.
She eagerly waited, field guide in hand as I downloaded my shots. This is a joy that we can still share, one of the few times that she does not feel stressed out. Between the field guide and the Web, we learned that our visitor was probably a Brahminy Blind Snake, also called a Flower Pot Snake.
We enjoyed a happy voyage of mutual discovery as we learned about the species. The hoarding that I find unacceptable but that I live with anyway didn’t disappear. My partner’s brain damage didn’t go away, or my confusion as to how to deal with it.
All that complication vanished, at least for a little while, as we admired the Flower Pot Snake. We could share the same kind of mutual fascination that had drawn us together in the first place. That part of her was still her.
“Just clean the house up!” her GP had told her three years ago, while my partner’s therapist (three therapists ago) had encouraged her to write a letter confronting her childhood abuser, as a way to unblock her so that she could declutter. That’s when my partner had been diagnosed with OCD. The inspector from DCF had said, “If there were any children living here, they would be taken away.”
The therapist two therapists ago, the one who had diagnosed my partner with schizophrenia, had compared the clutter to my partner’s memories — as though all the information that she might ever need to access had burst out of her head and now lay scattered around us. My partner’s test results suggested dementia. My partner insisted she would have done better on the tests if she’d gotten more sleep, but sleep disturbance is part of her disorder.
Gradually, she has filled a box with items for a thrift store that takes just about anything. For a hoarder this is huge, even though for people like me it’s a drop in the bucket. I tell myself to respect the drop. I delivered the items last week, and now the box is ready to be filled again, at whatever pace.
It’s taken her three years to write and send the letter to her abuser. She had written it after she had been maxed out from therapy. On top of everything else, she’s been doing a lot of hard emotional work. Much of her progress there has to do with her feeling better physically, thanks to treating her Vitamin D deficiency and to surgery last October to remove a toenail and its decades-old fungal infection.
Recently, following her latest diagnosis, my partner has been insisting that she has traumatic brain injury rather than MS. She doesn’t like the fact that MS is a “mysterious illness.” The specialist we saw in December had said she has MS that acts like traumatic brain injury, which is why he had recommended literature on TBI.
My partner had “remembered” him saying that she could have TBI masquerading as MS instead, even though his notes (which she’s read) say otherwise.
She further theorized that her regular neurologist and the specialist were playing good cop/bad cop for her benefit. She said that the neurologist had talked about the scarier (to her) MS, then sent her to the specialist so he could “let her down easy” with a diagnosis of TBI. And that when the specialist had to break similar news to his own patients, he sent them to the neurologist. That the two of them had this kind of mutual arrangement going on.
(At times like these I just tell her, “I don’t know.” And she answers, “Well, it’s a theory.”)
Yet last month, when books on TBI had arrived several weeks after I’d ordered them (I’d ordered them around the busy Christmas season), my partner said, “Everyone’s talking about traumatic brain injury now. It’s the thing to do, with MS.” She said that the delay in the books getting here was probably due to all the orders now being placed for them.
I said, “I doubt that.” For one thing, I said, her presentation of MS is very atypical, not typical. For another, those books are written for practitioners, and the authors had been recommended to us specifically by the specialist.
She said, “Well, it’s a theory.”
Yesterday we saw her regular neurologist. I watched as she tried to convince him that she has TBI, not MS. She insisted the specialist had told her she could have TBI. She had laboriously gone and listed every single time she hit her head that she could think of, including an incident where her parents had not remembered which child had fallen. My partner is convinced it was her “because no one else has had an MRI.” (I didn’t point out that she rarely communicates with her family.)
The neurologist said that in order to have TBI, she would have had to sustain an injury that put her in a coma for six months, plus there were no micro-hemorrhages in her scans that would have suggested TBI.
She’s since tried equating all her falls over her life to a six-month coma. Or the months when she had worked two jobs in the mid-90s, because that had felt like a coma to her.
The neurologist is a blessing. I see how patient he is, and good-natured. She was putting words in his mouth even as we sat in the examining room, “quoting” things back to him that he wasn’t saying.
We were given literature to review of possible therapies, though we were also told that any effectiveness they might have is limited. I told my partner that I support whatever she decides. I think she is slowly getting used to the idea of MS (or getting used to it again? I’m not entirely sure), especially since she also has a choice of whether or not to try the therapies. Having a choice reduces her stress level. When her stress level is reduced, she functions better.
Psychosis is one of the possible (though less common) side effects of MS treatment. But psychotic episodes have also resulted from my partner’s brain damage. The neurologist agreed with my guess that one could be confused with the other — that we’d be unable to tell side effect psychosis from brain damage psychosis.
After the appointment, my partner and I stepped outside the clinic and she pointed to the sky. A tropicbird flew overhead, its ribbon-like tail streaming behind it. It was too fast for the camera I carry with me. My camera serves as my own form of stress relief.
From the car my partner spotted mallards and Muscovy ducks in a waterhole. The birds made our day. So, too, the moon that I was able to photograph, and which was rising by the time we reached home.
As I write this, she is sleeping on the cluttered floor in her office, which is where I found her after I awoke. She sees her new psychotherapist in a few hours, and I’ll wake her soon.
I had met privately with the therapist during our last appointment, to let her know what was going on. When I showed her pictures of the house, she asked me, “How can you live like this?”
It’s part of a larger question that I struggle with daily. Am I enabling? Or am I empowering, giving my partner the space and time she needs to progress at her own pace? So many of her issues jockey for position. I have to choose which battles to fight, see what I can negotiate, and try to decide which compromises could help both of us in the long run.







You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 




Kristin
Ejourneys, those are tough questions, and it must be excruciatingly difficult to even figure out what you can affect and what is too compulsion-driven make a dent in. I guess this is a good place to try to work these things out. I think you are just amazing.
I have to say (and I’m sorry but I can’t let this pass, as an advocate of TBI victims for years and as one who has spent years studying TBI0, that your partner’s neurologist may be a blessing in one sense, in that he is patient and kind, but his definition of TBI is, to put it kindly, a little strange. TBI is not determined by micro-hemmhorages or length of time in a coma. There doesn’t even need to be a coma. Just ask all the football players who are dealing with TBI and resulting dementia following repeated concussions that resulted in no coma. Many TBIs are the result of shearing of axons, disrupting brain function. These do not show up on any scans (except possibly PET scans). This is one thing that makes it so difficult for TBI sufferers to get services and/compensation.
I am wondering if the neurologist just said what he did, sort of exaggerating what is necessary to prove TBI, in order to get your partner to cease thinking in that direction and to focus on MS as the primary diagnosis.
Anyway, keep up the battle and keep us posted. Yours in a difficult journey.
ejourneys
Kristin, thanks so much for your TBI info, and for your advocacy. I think the neurologist was referring to what the scans showed and the type of damage seen on the MRI (as in, for TBI to show that type of extensive damage, one had to have been in a six-month coma, etc.). But you make an important point that actual TBI might also exist, in addition to the MS, in ways that don’t show up on the scans.
Right now our main challenge is the paperwork for Social Security — getting my partner to focus on that, especially on questions I can’t answer (and that, in certain ways, she can’t answer, either).
Denise
Wow. You are such a beautiful writer. Thank you.
Your last paragraph says so much. How much do you do (or accept or put up with) on behalf of another? And, when do you draw the line? Such a tough question and yet you truly are the only one who can answer. These are your boundaries, which can be as fluid and fixed as you’d like.
You both see nature in its grandness. What a wonderful passion to share.
Trish
Ejourneys, It’s interesting to read about your visits with the neurologist. As my brother has had a lifetime of intractable epilepsy, loads of anti-seizure medication as well as two brain surgeries, we’ve had our share of neurologists. One thing I have found is they each have their “specialty” — in fact, one of the recent neurologists Robert saw hadn’t heard of SUDEP (sudden unexplained death from epilepsy). Like I said, each has their own “specialty.” It’s great you have the love of nature to share with your partner and that brings you both stress relief. We all need something like that. Good luck with your Social Security challenge!