Monthly Archives: March 2014

On Golden (Green) Pond (Water)


One of the common co-morbidities of EDS is Irritable Bowel Syndrome (IBS). I have just come out of a long stretch of what, for lack of a better word, was a remission in that department. I was diligent and thanked the powers that be frequently for each day where I was not stressing out about my gut, and was careful to make no changes to what I ingested in order to keep the streak going.

This ended in Bisbee, AZ, at a little vegan coffee shop wherein we drank Chlorophyll water from a dodgy looking cooler. I drank very little, but it seemed to flip a switch that sent me into a 24-hour period of great unhappiness. No one else has apparently ever suffered this effect from drinking pond water (except my friend Dirty Sally, who did once drink actual pond water and paid dearly). Dr Google tells me this is possible, yet my traveling companions partook of the green water and did not suffer at all. I was the only person first vaguely nauseated and then up at 3:00 am with a gnawing stomach and undertaking a cleanse.

While most of that subsided, the delicate balance of the gastrointestinal universe was disrupted. This challenges my ability to avoid anxiety almost more than chronic pain. I have an instant catastrophizing mentality that kicks in with any minor disturbance. I worry that I have cancer (I do not, I’ve had that test). I worry that I have some sort of mutant parasite (no, I don’t). I worry that it will disrupt my life (no, there are handy pills for this). I worry that I can’t seem to just take the handy pills and drive on and stop thinking about it. 

There is an odd track that my brain settles in at times like these, whereby a sort of intense, internal dialogue begins that loops endlessly. Part of it starts to monitor every minor shift, change, gurgle, twinge or lack there of, keeping up a steady stream of information to clog up my thinking. Part of it tries to shush the first part by repeating, “There is nothing wrong. You took the pill. You can now go on with your life. Go on. GO ON ALREADY.” But the obsessive brain is not easily dissuaded.

With chronic conditions that tend to vary of their own accord, it’s hard not to be stuck in a reactionary state. I want to be able to just say to myself, okay, this is irritating or inconvenient but there are ways to minimize and this, too, shall pass (ha ha ha). It will not always be like this. Even as it worsens at times, at other times it gets better. Let it be. This is extremely difficult for me to do, but I can see the value of trying. I just don’t know what it will take to jolt me out of that neurological rut that my mind travels in. I’ve never been able to turn off my thoughts, despite knowing that the ability to do that would be a huge relief not only for me but for everyone who has to live with me.

There’s always work to do. Also, never drink the pond water at the hippie coffee place. This much I have learned.


Household Tensions


Another dog fight has occurred–although calling it a “fight” is a stretch. More realistically, the Pit has again attacked the Chihuahua. These two dogs have lived in happy cohabitation for all of the 5 year old Pit’s life, at least until about six weeks ago, when the first unprovoked attack happened. This one, yesterday, was shorter in duration but more damaging. I took the Chihuahua in to the vet to check on the bite wound. At 3:30 pm today we went back to the vet to collect him after his having been anesthetized in order to insert a drain.

We had no clue what we were getting into. We collected a terrified, shrieking dog that wrestled and thrashed  and screamed as I tried to hold him still and he scraped my neck and face with the wild flailing of the cone of shame. The drive home involved the same, with periods of him laying, rigid, in whatever grasp I was managing to hold him in, gasping and wailing until the next time he tried to get away. The drain is horrid looking, and there is no way I’m getting close enough to it to clean it tonight. He is still bug-eyed and terrified, periodically crying and fussing.

Now, everyone in the household has felt the stress of the situation, and we’re all mad at each other for some reason or another, and really what we all are is freaked out about how badly hurt the dog seems to be and how unsolvable the problem is. Ultimately, the issue is that unless we can manage to somehow keep two dogs that live together entirely separated for the rest of their lives, someone’s heading to the vet for one final trip. The Pit is the dog of my heart; I adore her, but I have to say that now I am feeling like I can’t trust her.

I suspect it is motivated by stress and by resource guarding. She was stressed by our absence and a new pet sitter. Our feeding schedule was restricted by nighttime pooping in the house, so she is stressed by that. Finally, she is deeply attached to me, to the exclusion (or sometimes grudging inclusion) of all others. Insecurity about my presence, territoriality and excitement led to striking out at the other dog. None of that is an excuse, nor do I find it easy to solve, since dogs don’t speak English. I can’t sit her down and explain to her that she is not to hurt the other dog.

I dread a sleepless night with the Chihuahua that will just set up a day of household unhappiness tomorrow. I see no real way of being able to keep them permanently separated in the same house. I also don’t feel ready to have my dog put down. It’s a shitty situation that makes everyone feel helpless, and therefore irritable. I don’t know what, if any, long term solution exists that doesn’t involve making a permanent, irreversible decision.

Fortunately there remains plenty of mundane issues to keep me focusing on that. Like,  I need to get the Chihuahua to drink some water and go outside so I can give him more medication. That will take some creativity and patience, but I think it can be solved. The bigger issues will have to wait at least until tomorrow.


Transformative Work


I shared a little meme with Xena today, because it summed up the place I am in and how I need to conceive of things in my mind. It said: Change Is: Hard at the beginning, Messy in the middle, Gorgeous at the end.

Please don’t unsubscribe because I’m getting sentimental and over-simplified. I promise I’m not going to get all foolish on you. I was trying to talk myself through a small panic attack. Tomorrow, someone with whom I work very closely will find out that change is afoot. I am trying not to be freaked out about that person being angry with me, so I’m telling myself that change is hard at the beginning, but it won’t be hard forever. The changes are necessary and fairer to me, and our boss will present them as diplomatically as possible, but it will be ugly for awhile.

That leads me to my other simple saying of the day, which I gleaned from the new shrink this morning. She said, “Resentment means that you have not kept good boundaries, and have allowed someone to encroach on your safety or comfort or welfare.” I’ve just had to say that to myself all day long, “Wow, resentment is caused by not keeping good boundaries! Fucking amazing!” I have not kept good boundaries at work, and that means that maybe some of what is currently kind of shitty about work is within my power to fix. I need to let go of trying to avoid conflict (If I let this person give me too much to do or boss me around and don’t complain, we won’t fight) and allow the change to happen that will be better for me. I can survive someone being mad at me if it results in change for the better, right? Theoretically, yes, I can.

At the same time, I’ve started a new drawing. I always start on cheap copy paper in pencil–there’s no pressure that way. This is how it began:



I struggled with the hands and arms, wandered off, came back, wandered off again, then figured out what I wanted to change. I got it far along enough to feel ready to ink it on the copy paper and erase all the extra lines:



I’m much happier with it. She’s more interesting and compelling in this contorted yet seemingly peaceful position. No, you don’t have to have a doctorate to grasp what story I’m telling with this, but that’s what art does for me, it tells me the story of my life at that time. I haven’t transferred her to good bristol board yet, but that’s the next step.

So those are today’s themes. Survive change, fix resentment with better fences and try to stay true to myself. Tomorrow I might be right back here saying, “Screw change! I should’ve shut up, this is awful!” Anything could happen.

Jaws of Life


In addition to seeing the new shrink yesterday, I went to the dentist. For the first time, my jaw felt really unstable when I opened it for the cleaning, and ached throughout–at one point I felt it start to slip, like it was going to slip out of place, but I caught it. I asked the dentist if I could switch to a 9-month recall instead of a 6-month recall to cut down on the mouth-opening.

Today it hurts to open my mouth all the way and both sides of my jaw, at the joints, are painful to the touch and aching. The right side makes a sound that is *exactly* like rotten elastic if I yawn or open it too wide. I have just finished icing each side for 15 minutes and am repeating a mantra, “No more chewing gum for me. No more chewing gum for me.”

I’ve heard of people whose jaws dislocate, and through what they say is blinding pain they are able to get them back in place themselves (can I have a hearty No, Thank You?). I’ve heard of people who have to have their food cut into tiny pieces for them so they can carefully chew it. Sometimes their wrists are bad too, so someone cuts their meat up for them. None of this bodes well, or contributes to a positive outlook.

Because I have this vivid imagination and thought process, as the hygienist was cleaning my teeth and my jaw was aching I was thinking, “But, what about blow jobs? Can I no longer give the man a blow job? What if my jaw dislocated during a blow job?” Dig further, and the question is the much bigger one: How do I maintain an intimate and sexual relationship with my partner if I am becoming less and less -abled? I have no interest in giving up my physical experience with my partner, but what happens as things turn into this sort of, “Oh, no, I can’t lay that way, no, wait, let me turn, no, shit, that hurts my hip….well, okay, just I can’t do this for very long.”

That’s lonely and isolating and gives rise to a lot of negative feelings on my part about my value as a person and my attractiveness and my “chances of dying alone”-ness. You probably don’t remember it, but in Terms of Endearment  there’s a scene between Debra Winger and the man she is thinking about cheating with, John Lithgow (seriously? but I digress). She asks him about his wife, do they have sex together? And he says no, “she has back problems.” And Debra, she says something like have they tried other positions and mimes I think, woman on top as an example. He says, profoundly sadly, “No. She won’t do anything like that.” So they have a little affair. Then she dies, which is what she deserves for screwing around with some poor woman’s husband while she laid at home on a heating pad.

Even then, and I was what, 13 or 14 or so when that movie came out; even then, I thought how much it must suck to be that wife, even as I thought what the system wants me to think, which was that she should have tried harder to keep her man! But how sad for her, was he only married for the sex? One of my deepest fears about all of this is that I’ll die alone. Sometimes I tell my husband, “Just divorce me now! Set me up in a little house and go on and get a healthy wife!”

This hurts his feelings because I’m being an asshole and doubting him but what I’m also doing is naming this tremendous fear I have, that we will not be partners and lovers and friends and the power dynamic will shift until I am just the pathetic patient. Just the sad, sick wife. That sort of outlook just makes me feel breathless and sad.

Fortunately, Debra Winger’s pretty old so she’s no longer a threat to wives whose backs hurt, but there’s probably more where she came from. And heaven knows, my back hurts.

It’s the Same Old Ride, But I Want Off


Recently someone manipulated me into making a decision I should have been allowed to make on my own. All my life, I’ve lived with someone who needs to overshadow me, talk over me, demand all the attention and find me deficient, not loving enough, not good enough—unable to meet the cavernous, vampiric need. I’ve worked, progressively, towards freeing myself of that yoke, each round of therapy I’ve had in my life has had as part of it the making of boundaries, the development of a self that is independent of another and detaching from unhealthy neediness.

Seeing the new shrink today, the next step is revealed: I must make a space for me, that is mine, that is sacred and that no one gets into without my permission. It’s funny that I just read this terrible book by Sarah Gran, Come Closer about demonic possession (and a serious rip-off—$10.99 for a 120 page book!)–where someone is forced to cave to the will of a demon–in some ways that’s what this relationship is like. When I had a teenage daughter, and now with a tween in the house, my husband and I often remind each other, “Don’t fear the fit.” Don’t let fear of the explosion hold you hostage and therefore cause you to fail to act the way you need to in order to shut this down.

The flip side of that is that I must also learn how to let the right people into that space that is me. The murder of my best friend coupled with the above relationship made me retreat far away from letting anyone new into the inner circle (I have a friend I’ve had since my kids were little, and while we’ve mostly emailed, she has stuck by me for years–like, 20 or more and we have been totally open to each other, we just don’t get to live near each other at the moment). When I met Xena, I found myself feeling the way I felt about Luray; interested, vulnerable, friendship-like. That scared the shit out of me initially, and even now I think I keep it at an odd arms-length much of the time. Yet I long for friendship, I long for someone I could be entirely real with, and who would like me anyway. I imagine people think that I am very on-again, off-again and don’t know that I’m, well, weird.

Maybe the big lesson is to a) create the inviolable space, and then b) choose, fully, to let some people in, and  c) choose, also fully, who to keep entirely out.

She gave me a lot to think about, but that’s what’s leaping to my mind at this moment. Making space but being in charge of the gate.

Reflecting On Nothing


I gave up and called a shrink this week, setting up an appointment for a week from tomorrow. We spoke briefly on the phone about the general whys and such. She mentioned that I will need to learn to stay, as much as possible, in the present. “Focusing on the future or the past will just make you nuttier,” she said. I found the -er in nuttier amusing; obviously I’m already nutty since I’m calling a shrink. I recognize that she is probably right, even as part of me suddenly feels protective of my anxiety and regret–a known devil and all that.

Today, as I do most weeks, I visited a friend who had brain surgery over a year ago and never really came back all the way. I try to visit for an hour most Sundays, mainly because it’s absolutely the only thing I can do about a situation that is tragic and destined for poor outcomes–those things I can’t do anything about, but maybe I can give my friend’s mom a 1-hour break, maybe my friend can enjoy visiting with someone to break up the monotony of sitting in the house all day, everyday, while her elderly parents try to raise her kids (one of whom is profoundly disabled) and take care of their daughter who will likely never be the same or fully independent again.

I’ve noticed that whatever bit of wiring was disrupted or bit of brain tissue scooped out seems to have created a state of being for her that is primarily present. She remembers everything about her life up until the period just before the surgery–with the notable exception that she doesn’t realize who she was in a way that allows her to differentiate what she is like now. She remembers nothing about the surgery, the stroke, the brain infection, the second surgery. Her short term memory is shot and she can’t keep current details in her mind. She’s always happy to see me, and always expresses that she “is never sure if you’re coming or not,” even though I always tell her and her mom that I’ll be back next week or that, on occasion, it will be two weeks before I return.

I have been very troubled that my friend is entirely unaware of her loss of self. She never says anything like, “I need to get better because I can’t live like this” or “I was an editor, I took care of my disabled child, look at me now!” She sometimes refers to “when I feel better” but never says anything like, “Remember when I could walk without a cane and my left hand worked?” She expresses no frustration or grief over this state she is in. Most of the time I think that’s awful–she’s in a permanent Groundhog Day, she’s unmoving as time and life move by her.

Today I wondered if that is what is meant by being in the present? I mean, not directly, I’m not an idiot; but is it good in some way that she can’t see that her commitment to heavy therapy for the disabled child has disappeared and her family is only able to do the bare minimum? Would it help if she were aware of her inability to do anything about that? I don’t know. It’s a train wreck either way; should I feel sorry for her that she can’t see it?

It’s like people who want to die in their sleep and people who find that idea horrifying because maybe they won’t “know” they’re dying. Typing that sentence makes me feel faint, by the way, but I am definitely not in the “in my sleep” camp. I fear loss of control, and more than that, I fear the loss of the illusion of control. I suspect that is what living “in the present” is going to mean. That sounds, to me, like a wild abandonment of all sense, the same way it bothers me that my friend has lost her life and inhabits it now as just a friendly ghost.

Also, there is the notion of acceptance. To me, acceptance is giving up. Acceptance is a state that makes things easier on everyone else because one stops raging and sobbing and surrenders, becoming a hell of a lot easier to live with and/or manage once they do. My friend is much easier to care for because she doesn’t seem angry or frustrated or sad. She doesn’t have the capacity to say that this is not acceptable; she is now in  sort of state of acceptance by default. I’ve already told the new therapist that I am not expecting to achieve acceptance.

Obviously, there is middle ground, and no one can exist without thinking of the past or the future entirely. Obviously I am anxious about going to therapy and to some degree fairly certain that it won’t work, since it won’t make me stop having EDS, or chronic pain, or anxiety or insomnia or POTS and it won’t stop the deterioration of my joints. I could just as easily say that my friend is the opposite of being in the present, since she can’t ever remember what’s happening now even as she is happy to talk about being in middle school for as long I want to entertain the repetition. I could say that she is not in a place of acceptance because she is not conscious of there being something to actually accept. Do I fear becoming “easy” to care for, and therefore less of a person? Yes. Even as I find myself impossible and don’t want to be the awful person my family has to live with.

I hope I’ve picked a good therapist, because she’s not going to be able to coast through this one.