Monthly Archives: June 2015

Drawing Board


I learned to sew as an adult and as a result I carry no hang-ups about it. I don’t worry that I’m not good enough or that I’m doing it “wrong” or wasting my time. My father started trying to teach me drawing when I was six. He started with vanishing point perspective.

It was all downhill from there.

I internalized all kinds of criticism and hang ups and insecurities about drawing. I’ve talked about a lot of that already here, so it’s not necessary to rehash it. As aware as I am, though, of how wrong most of those notions are, I am still constrained by it. So, this summer, in between major medical bullshit and the like, I’m doing some drawing. Just drawing, just whatever I want, no rules.

Here’s the first three:

6 22 2015 6 24 2015 6 25 2015

I like them–and that’s the only thing that matters.

It Was Bound To Happen


I’ve been free of prescription meds (with the exception of my asthma inhaler) since last summer’s drug debacles. I’ve not been in physical therapy, I’ve not seen my former rheumatologist, I’ve not seen my PCP for anything EDS-related except to get a referral to a doc in another city (who can’t see me until September and who might not take my insurance, anyway). I’ve stuck with the Shrink and massage and wine.

My shoulder pain, by yesterday, had gotten to where I felt short of breath. Yesterday morning, as I sat at the table drinking my coffee and wasting my life online, everything went black. I had a second before my face would’ve hit the keyboard to take a really deep breath, and the mist gradually cleared. This has happened once or twice before, but usually with warning. My heart will suddenly flop, or whomp against my chest, and I know to take a really deep breath. It’s never been that it was suddenly lights out, no warning.

I checked my blood pressure and pulse and they were both high. I worried that I was having a heart attack, or that my lung had collapsed, etc. I called my mother to consult (I am the best unlicensed physician you ever met, but self-diagnosis requires a consult with the second-best unlicensed physician). She agreed that I needed to call my PCP. Also, she said, I shouldn’t drive myself to the appointment.

I called the office and the assistant gave me a 2:00 pm appointment. I texted my PCP. As an aside, let me note that I loathe my PCP’s office, which is crappy. I find his staff generally unprofessional, inefficient and sometimes stupid. He is in a practice with his father, so his mother is the office manager and my, that was a bad idea. There is even less than the standard of zero confidentiality that exists in this town. I stay with them only because my PCP is really smart and good at what he does, and because we are friends and I can text him.

I texted the details to him and he replied: two options, a) see (asshole cardiologist) or b) I’ll do an ekg in the office. I picked the EKG. My husband took the afternoon off to drive me to the appointment. The EKG was normal enough. The symptoms (including a migraine-esque headache) were all clearly of the autonomic/P.O.T.S. variety. We have already tried the benzodiazapines, the SSRIs with no success. That leaves beta blockers, so I now get to take Propanolol. He gave me a tiny dose–10 mg twice a day. I suppressed my standard objections–they’ll make me tired (he had predicted that and suggested this was least likely to drag me out), I don’t want to take medicine (then don’t go to the doctor), etc.

He felt my shoulder/neck pain was coincidental. The other reason I stay with him is that he’s a nurse practitioner and a chiropractor. He said that people don’t realize that we have ribs going all the way up the spine, and he felt that one or two of mine were out of place. He adjusted my neck and shifted the rib back in place. It may have been subluxed by massage, but who knows?

This morning I am worrying about taking a new drug and what it might do to the delicate balance that is my gut, and frustrated because my shoulder still hurts. I’m back on the medical merry-go-round, and while I know this past year was borrowed time, I’m unhappy about having to get back on that ride.

It’s Always Something


When I started massage therapy last year, it was miraculous. All summer I had complained to any provider who would listen (or couldn’t help hearing me even if they weren’t really listening) about my shoulders. My rock hard, painful, clicking, popping, crunchy shoulders that felt like they wanted to tear themselves away from my neck altogether. After a couple of weeks of once-a-week, hour-long massage, I realized–my shoulders didn’t hurt anymore. I was converted, and made clear to all concerned (family, work, friends) that on Fridays at 11:00 am I have a massage, and nothing; not tech week, not socializing, not anything, was to get in the way of that.

About two or three months ago, my mother offered to pay the difference for ten 90-minute sessions. When I completed the tenth, I knew there was no going back, so now I have a weekly 90-minute massage that sets me back $95 per visit. But if it helps, then, it’s completely worth it. Right now, that’s the problem. Lately it doesn’t help, or if it does help its for a day or two, but doesn’t carry me through the week.

On Friday I went, as usual. My shoulders were lousy. She had trouble getting them relaxed enough to even work on them. It’s funny, too, that when my body is resisting it’s framed in terms of me not letting go enough. I wondered if maybe it’s not “me” per se, but that my body is so jacked up it can’t release itself (what? Not my fault? Not because I am just not good at this? Whatchu talkin’ ’bout, Willis?). We did a couple different things.

Friday night was opening night of Chicago, the celebratory presentation of our collaborative effort to make theatrical art. That meant that Saturday? Saturday was the beginning of my actual summer break. I got up yesterday with so much pain in my left shoulder/neck that I couldn’t look over that shoulder, I couldn’t not think about the pain, I could hardly interact with any success because the pain alarm system was just jangling away, louder than anything else. I was driving to take Ibuprofen, I took a warm shower, I laid on the heating pad, I iced it, I heated it, I took a hot bath with epsom salts. I sat outside under the misters and drank two hard ciders mid-afternoon, I took a short nap, I rubbed in that rip-off Blue Emu shit I bought (oh, we the chronic pain types, we can be parted from our money so many different ways).

I endeavored to distract myself all day. I tried as hard as I could to not berate myself or engage in internal whining about losing this First Day, I tried to deal with now, not, “What if now that I’m off I feel like shit for the WHOLE SUMMER?” etc. I would say I was 75-80% successful. I resisted the desire to tell my shoulder, “Fuck you, I’m going to sew/draw/work anyway!”

This morning? My left shoulder is much, much better–down to its normal 2-3 pain level. Ready for the kicker?

My right shoulder is extremely unhappy–from the base of my skull to my arm to my rib cage. Like a 5 or 6 level pain.

I was willing to give it one day. I can hardly cope with the idea of giving it another one. In a minute I’ll consume my chia seed breakfast (which has restored almost normal function to my gut, so there’s that….), take more Ibuprofen (and pray that doesn’t lead to a night of Gnawing Stomach), take a hot shower, put on the rip-off snake  emu oil bullshit, and see if I get to have any of the things I wanted for this day.

Then I have to decide; go back to massage? Call it quits? It’s hard to let go of something that I perceive as being The Only Thing That Helps. Even if right now, it isn’t. Because then I’m back to There’s Nothing That Helps.

Not my favorite place to be.

What Time Off?


I was asked to make a Day of the Dead-themed Victorian walking suit for a show that will spend two years traveling to various museums. For the first time in my artistic life, I have not only failed to submit my piece early, I have missed the initial deadlines. Inspiration showed up late in this case, but I think it was worth it. Initially I made a Victorian-esque skirt from some of my extensive collection of Our Lady of Guadalupe fabrics. Then it all ground to halt. Digging around in a cedar chest filled with -Ray’s things for a class I was teaching on the topic of DIY-clothing (upcycling, transforming, etc) I found a jacket that I had made for her from two vintage blouses that featured an appliqued skull on the back.

In looking at that, and some other things I had made for her, I realized I was ready to let these things out of the silent tomb of the cedar chest. I wanted to transform them, then release the back into the world. I took the tshirt she sent me with the logo of their band, which I designed, and cut the logo out, hand colored it, and hand appliqued it onto the skull jacket:

Victorian Altar Process 1Victorian Altar Process 2Victorian Altar Process 3

Then I appliqued elements from a gorgeous quilter cotton that was full of Mexican folk symbols (and some skull fabric leftover from my purse-making days) as well as drawing root elements by hand with alcohol-based markers and a Tee Juice marker.

Victorian Altar Process 5Victorian Altar Process 4

Next, I drew in a cat skull with bony wing elements and painted them gold.

Victorian Altar Process 7

Then I decided that everything needed embroidery. Everything.

Victorian Altar Process 8Victorian Altar Process 9Victorian Altar Process 10Victorian Altar Process 11

Next  came the bustle. I used as the bottom layer a capelet I had made for -Ray from a vintage apron, that included hand made flowers and a portrait I drew of her sewn into the pocket. Over that are layers of a vintage linen with crocheted corners, and the top layer is a rotten Victorian collar. For height I made two sort of bum rolls out of related fabrics. Then I drew, appliqued, embroidered and painted everything.

Victorian Altar Process 13Victorian Altar Process 14

I will save the rest of the photos for a second post.


Since that’s not enough to do, I am also volunteering as the Costume Designer for a production of Chicago that a good friend and co-worker is co-directing. The concept is that the show is being put on by a group of convicts in a modern-day women’s prison (shades of OITNB). Thus, they are all dressed in gray prison clothing which the actors have to try to make look sexy without a lot of options to remake things. If you doubt this possibility, think back to being in high school and shortening your skirt by rolling the waistband after you went to school, or tying your shirt so that some midriff showed. It’s working quite well. Also, though, a lot of their costume elements need to look like they made them from a limited amount of available materials, so I have now gotten very good at making fedoras and boaters that look like they are made from food wrappers and boxes:


There’s also a derby hat covered in Dum-Dum wrappers for Amos as well as a bow tie and lapel flower of the same. The third boater, not pictured, is a Cheese-Its theme.

We go into Tech this week, and then, possibly, I will reclaim my summer break and actually get to relax and enjoy some of it.

Famous last words, that.

Like The Star Wars Trash Compactor


I am having a hard time with having lost Boris (our small Mexican dog with the big Eastern European name) and doubting my choice to let him go. Not in any rational sense; on paper, logically, I know I did the right thing. But in my heart, I feel sorry and sad. I hope he understands; but maybe not–I’d love a world where animals had the same treatment as people, but would I love that because no one would get euthanized for having run out of quality time, or because people wouldn’t have to suffer for so long, either?

I just know that I really, really miss that little guy, and I am responsible for his absence.


The trip to Chicago was really emotionally hard, and the key piece of that was understanding that I can’t depend on my spouse to advocate effectively for me when he is in his place of origin. On one level, I get it–he reverts to his kid role, he’s overwhelmed, they are extremely difficult. On the other hand, I’m angry and disappointed. I really am on my own, and since that is true, I will never go back with him to visit them unless something is really wrong on a deathbed sort of level. I can’t put myself through that. If they come here, as they have threatened, I will go out of town. I’ve given a lot to them over the years, and they’ve taken a lot more than they’ve given back, and their son can’t set good boundaries with them. So, I will have to set boundaries to take care of myself.


Long after I am gone, I am sure medical science and genetics will evolve to determine how mental illness–or at least the propensity for it–is passed down. Borderline personality disorder runs in my family, and while I am sure the process is somewhat akin to alchemy more than straight genetics, it means that right now there are two Borderlines running about– each from a different generation. That’s just my mom’s side, too–there’s also depression, anxiety, alcoholism, sociopaths, suicide, self injury and drug problems coming from both sides. The question maybe is how do any of us make it out alive? When you know that someone is ill, and you’ve proven to yourself that you cannot help them, you have to detach and protect yourself. Sure, their behavior isn’t personal, it’s pathology, and yes, they are in tremendous pain, but that doesn’t mean you should allow them to hurt you. The moat is in place, the drawbridge is up. All signs say, “Go away.”

You’ve reached the boundary, you’ll need to turn back.


One of my tenants called me today, in tears. One of the roommates’ mother had committed suicide last night. Walked out of the room from an argument with her kids and killed herself. The tenant who called me kept saying she was sorry for burdening me and I told her she wasn’t, I care about her, it’s a horrible thing. I reminded her to take care of herself so that she can keep on being a good friend to her roommate. I told her that her grief is valid, and doesn’t need to be measured against the roommate’s. Gosh, there’s enough grief to go around, really–you won’t run out, or take someone else’s, go ahead and grieve. I suggested that she not judge anyone for how they act right now; grief does strange things to a person, and suicide is like knowing an asteroid is coming to vaporize you–maybe then it might seem rational to ask about how much the house is worth or what should be done with the cars–those are solvable problems, whereas the asteroid is just this terrible thing hovering above your head. Maybe it’s not possible to look right at it; at least not at first. I told her we’d cover the rent if it was late, not to worry.

I revisited, for a moment, Ray and Ruby and John. But then I let them go back to their places. You never get over it, I told my tenant, but you learn to live with it. It takes a long, long time.


The theme is who do I have to take care of, and how much? I have to take care of myself. I have to take care of my child. For ten minutes on the phone I can take care of my tenant. I do not have to take care of people whose mental illness could cause them to harm me. I do not have to take care of people who have no space in their lives for me. I do not have to take care of people who aren’t doing their work.

The shrink said that when we’re about to refine something, or pass to another level of understanding, just before we get there it feels like the walls are closing in, and the problem is everywhere. All around me demands are being made for my attention and energy. People want me to put them ahead of myself. So each time I say no, I’m moving forward. No, you cannot come to my house and ring my doorbell a million times and pound on the door. No, I won’t go on a trip where I will be lonely and ignored and pushed beyond my limits. No, I will not act as a buffer for you to avoid your family.

She also suggested that I probably need a really good cry. This is also true, but a far more elusive beast.