mayfire productions

I’ve been feeling shy about blogging lately. With all the My Leaky Body shows and workshops for healthcare professionals it seemed unwise. I kept telling myself, “Julie, write like no one’s reading” and then realizing that that would be pretty illegible and doesn’t actually work as a principle applied to text. And there were incidents. There was the excited young healthcare professional who said excitedly in a conference call planning my trip to their conference,

“And I’ve read all your blogs, too!”

Which was a bit horrifying at the time because I was trying to keep pinkojulie in the closet. Albeit, a pretty transparent closet that was still accessible by google, but you know. Within a week, his superior who I was in direct contact with completely changed her attitude with me and did everything she could to sabotage my trip. “Forgot” to book my hotel room. Called and yelled at B. one day when she thought I was supposed to have done something that I hadn’t. And I blame pinko julie.

The play itself is pretty provocative, in fact, that’s pretty much the whole point. But somehow, the fact that I’m performing on Thursday for the last time until October makes me feel like blogging again.

So here’s my Neil Gaiman dream from this past weekend:

B. and I are living in a giant apartment on the top-floor of a schmancy low-rise building. We’re either having a party or moving & in moments possibly both. When we walk downstairs we realize that the lower hallway is the one from our first apartment. The 400 square ft. first floor place that we actually really lived for 3 years. And I’ve been having fond memories of this apartment lately. The garden deck, the way the sun shone in the evening. The pregnant cat moving in and having kittens, and most significantly, my major turning point between being mostly-sick to mostly-healthy. So the hallway is exactly the same, dimly lit, smelling of mothballs, puke yellow walls.

I comment that I never knew how awesome the upstairs was before. We let people in the front door, maybe they have boxes. My high-school best friend and her husband arrive and they want us to  go somewhere else. I don’t want to go so I think they’re mad at me. But I’m probably just being neurotic. When we get back upstairs the party’s really rocking.

Neil Gaiman is there, hanging out over our breakfast bar (yes, we have a breakfast bar). I tell him,

“I’m really sorry to go on about this but I just finished reading Coraline…” Which is true, B. gave it to me for Valentine’s and I put off reading it because I was worried it was going to be scary, but it wasn’t. It was incredible.

Anyway, he looks back at me with this wide-open vulnerable face and asks,

“Did you like it?”

And I’m shocked, because really, why would Neil Gaiman even care what I thought of his book. I answer completely honestly.

“I loved it. It was completely brilliant. I don’t even know where it came from but it was transporting, other-worldly.”

His eyes fill up with tears and he hugs me over the breakfast bar and I say ominously into his ear,

“It’s like you were a channel… for something.”

He nods and trembles then disappears. Not like dramatically with a woosh and a pow or anything, just like I got distracted with something else, like the party, or moving, or something.

Downstairs, Gracie, our new adopted dog, is waiting outside the door. People let her out when taking boxes in or out and forgot. Who knows how long she’s been there. Matted fur, looking wretched. And it’s 18th Century London outside. Literally, up and down the streets, old, 250 years ago type thing.

Then I wake up. Find Gracie and give her a giant hug. I go downstairs to say hello to the cats (B. is still sleeping). I take Gracie outside but all she wants to do is hug. She puts her arms around my waist and burrows her face into me. And it’s not until I’ve completely emptied the first cup of Yerba Mate tea that it occurs to me that maybe I didn’t hang out with Neil Gaiman the night before. And then I thought, “Pish posh Julie” (cuz that’s how I talk to myself in my head). “It was just me n’ Neil hangin’ out with the Dream King.”

“Oh God this is going to be in Act 3 now isn’t it?”

Kay grins at me as she tightens the tourniquet. Then she puts on her best “Julie” voice and mimics,

“I have to put my own intravenous in while the Ontario Healthcare system collapses all around me.”

Which to be fair, gentle readers, wasn’t actually happening. After the constant sagas of nurses and lab technicians ravaging me with needles and unsuccessfully digging for veins, I was quizzing Kay, who has never missed once in 4 years, as to what her secrets are.

She turns to another nurse, “I’m always worried now that I’m going to end up in Act 3.”

I smile, “you might. I think I’ll call you Kay. Like k-a-y. Do you like that?”

She does. Then obliges me in continuing our lesson and giving me homework on vein-spotting. For the rest of the afternoon she narrates everything she does in the 3rd person.

“Then Kay folds up a blanket to prop up my arm because the Ontario Healthcare System doesn’t provide pillows.”

and…

“While Kay prepares my iron she talks over my head to another nurse about another patient’s chemo.”

Which left me wondering if Kay should have her own play. Or if in fact she does and she performs in it every day administering iron and chemo in the hospital clinic. We’re certainly entertained.  I’m not even sure how I could imitate Kay in the clinic imitating me on stage imitating her. You know? 

They’re sprucing up the waiting room. So now there’s art, with, wait for it, actual colours. Hanging on the walls. Like bright colours. And the book shelf has a new addition. A whole row of blank notebooks wrapped in shiny plastic. I didn’t take one because I always have notebooks with me and I’m going to write anyway, but I had this beautiful vision of stories springing like cartoon flowers from their pages… patients and health care providers, friends, parents, kids, partners… writing about their healthcare encounters. Writing about all the dirty secrets of pain and shame and frustration, of process and the real moments of empowerment, of connection. Laying to rest all the commercial accounts of person-is-befallen-with-dreadful-illness, medical-saviour-comes-to-rescue, everyone-lives-happily-ever-after. And as much as I’m addicted to TV medical dramas, their accounts are just so far removed from how things go down.

And today my news is good. I had fun in the clinic. I’m chock full of fresh iron, and the blood results are happy happy. But it didn’t happen overnight. I still get emails from people who are in that middle-place, in pain, uncertain, stuck at home, no end in sight. I wonder, if we could somehow make that agony more visible, if we could develop strategies to support people through those dark places? Not just in moments of critical, acute care but through the chronic, the boring, the endless moments of illness. That place that our current social support doesn’t even touch.

It’s been snowing, the economy is crashing, the government is falling,  Paris Hilton *finally* selected her new BFF and I’m seeing Martha Wainwright on Saturday. I can’t really talk about the political situation because every time someone disagrees with me I hear my colon twitching in it’s jar in some medical lab somewhere and causing phantom pains to resound through my abdomen. Damn phantom colon.

So I’ll just say this. Traveling the country over the course of this year, from Moncton to Victoria, health care professionals have reflected the same things: the health care system is massively under-resourced and was in crisis long before the stock market. Paramadics, technologists, nurses, medical residents, students, doctors and surgeons work in this environment every single day. And every single resident of Canada is impacted. In our most vulnerable states, when we need to access health care services, we are met with a system that has been under major catastrophic stress since the 1990’s when massive cuts from the federal government were exacted on our bodies by provincial governments who were often ideologically driven.

And it’s not just about being ill. As much as this clearly impacts any of us who have either been through the system or love someone who has (ie. pretty much everyone), other socio-economic factors also loom large. Every time social programs are forcibly weakened by government, more and more vulnerable members of society access Emerge waiting rooms for a warm place to sleep instead of safe shelters and affordable housing. As economic conditions worsen, so do working conditions, with employer’s pressuring employees into unsafe practices, risking their well-being to save time and money. And health care professionals themselves are increasingly prone to long-term health conditions from working in a thread-bare system. As more money is funneled into the military and fighting wars, the scale of the war inside the healthcare system heightens. 

So in discussions of economic stimulus, falling governments and expert advice on how to save the stock market, let’s not forget the bodies. The ones that work to create the wealth, the bodies that are being brought home in bags, the bodies that are over-stretched and ailing from working in our clinics and hospitals, and the bodies of the people who are sleeping in the streets this winter. 

It’s 6:20 pm. I’m walking back into the hospital where I hit rock-bottom. Several times. And the really odd thing, is that I feel perfectly at ease. I’m not nervous at all. It’s getting dark outside and lights are twinkling. I turn to B.

“I feel like I’ve never been here at this time before, but I guess I would have been… just upstairs in a bed.”

I see a young doctor at the coffee stand and think, (deciding not to share this particular thought with B.)

“I feel like I’m in Grey’s Anatomy.”

Ok, which is weird and pretty random. But it kind of makes sense. Granted, I’m not a dazzling young intern imminently about to bed someone in the on-call room. But I’m feeling healthy. Dressed in my own clothes. Wearing make-up. And most importantly, not physically bound to the space by needing their services. I’m working today. And it feels most natural to be doing exactly the work I dreamed up from bed within these walls.

When I get upstairs I find out that one of the organizers of my event is the fabulous social worker I saw when I was admitted with a horrifying and agonizing bowel blockage 3 weeks before starting my second MA 4 years ago. I excitedly tell her how lovely she was. She doesn’t remember but is clearly pleased. Then I say,

“I really wanted to see you as an out-patient but I was only allowed to see psych when I got discharged. And they assigned me some resident who was like, 12. He was so not helpful.” (As an aside, in his defense, he did have access to some wicked meds which did go some way in making up for his emotional incompetence).

She apologizes and explains that she would like to see things set up differently.

And then it’s time to perform. I lead with some words about how there’s so much focus on what’s wrong with us all the time, and so little on what needs to be done in the social world to accommodate our leaky bodies. Charles Darwin had a chronic illness. He did a lot of work from the bath. But who even knows this? It’s not even relevant to the significance of his work. I so could have finished my first MA from the bath. 

So I take them to Vancouver, to the scene where I am denied re-entry into my program, to the operating theatre, and out through the recovery room.

The questions and discussion goes on and on. Everyone from doctors to friends, to family to naturopathic and spiritual people seem to focus on how we got sick and what we need to do to get better. But the only way I made my major shifts into wellness is when I stopped doing anything. Anything other than exactly what was right for me in the moment. When the balance moved from being sick more than not, to being well most of the time (!) <– this still deserves exclamation.

And myself care does involve cooking organic foods and avoiding certain things. It includes yoga and meditation. But it also involves TV. And Facebook. And vegging out with my cats, my partner, with friends. Predominantly it  means trusting and honouring my body and my desires for space and fun and relaxation, rather than succumbing to pressure to do what anyone else suggests I should. 

So my message last night was predominantly non-judgment. Guilt, shame, blame and social stigma suck. Watch DVDs to heal. The TV series are best because that can go on for days. Novels. The more ridiculous the better. And with all the questions from patients, mothers, partners, my answer is always the same. My illness was a social disease. I didn’t “eat the wrong things”, or “make the wrong choices”.  Self-care for me begins with the belief that I can just be. I don’t have to prove the I have a right to exist by constantly doing and achieving things. 

I have five performances in six days next week. Starting Monday at Mount Sinai in Toronto, then Tuesday at Grand River in Kitchener. Wednesday I’m doing a lunch-time teleclass for the Quality Health Network, where hospitals from across the country phone in with lunchrooms of healthcare professionals to listen. Then I fly to Alberta where I’m performing and doing workshops (mock clinical encounters that I’ve created!) for doctors, nurses and managers in the health region in Red Deer. Then finally driving up to Edmonton on Saturday for the Alberta Interdisciplinary Conference put on and attended by Health Sciences Students from across Western Canada.

I like to customize my work to better address different audiences and generally as this happens I start writing up recent clinical encounters. So here’s the latest:

It started before my run in the SummerWorks Festival this August. A post-surgical issue that has been chronically present for about 2 and half years, flared up in a serious and painful way. I was already panicking about the show, then completely debilitated by pain and then nausea from the pain.  And the last thing I wanted to do was deal with a medical issue.

The office staff working at my GP’s office fitted me in right away for an “urgent” appointment. When I arrived, my GP was really behind so a staff member came out and asked,

“Would you mind seeing a resident?”

“Um, only if I can see my GP afterwards if it doesn’t work out.”

(smiles) “Yes, she’ll be totally supervised, she can’t do anything without Dr. Qs ok”.

So I go in to meet the resident.

“Hi, I’m Dr. X.”

She goes on to ask me about my work. I laugh, explaining what I do, and give her a postcard for the SummerWorks run.

“Wow this looks really great, I’m going to come to this.”

I believe that she intends to come, but not really that she will, lots of people make such promises. I tell her how great my GP is and how she’s a great person to be studying with. How proactive she’s been about advocating for me among all of my specialists and around different treatments and procedures. And Dr. X the resident says,

“That’s what I really need to learn more, how to be a good advocate for patients.”

And it’s weird, I don’t know her, but I feel like a proud parent. She really means it. I tell her about my current “leaky” issue, and she asks if she can look.

So I tell her, “You can look, but you can’t touch. If you need to see something, ask, and I’ll use my hand.”

She stretches on the infamous latex glove. 

 Snap!

I automatically cringe at the sound.

She says,  “I’m only putting the glove on because it’s protocol, not because I’m going to touch you.”

I almost burst into tears at the unexpected respect coming my way. She proceeds to look very carefully and listens when I explain to her what treatments have worked in the past.

She leaves and returns with my GP, the 3 of us joke about them appearing in my next production with badly disguised rhyming names. I take my prescription and leave.

When I return for a check-up with my GP she tells me that Dr. X the resident actually came to my SummerWorks show and brought her boyfriend. Apparently she loved the show and they went out afterwards and discussed it at length. I tell her how great my appointment was with Dr. X and that I told everyone before my show,

“I just had such a fabulous clinical encounter… with a resident. I think it bodes well for the run!”

read it here!

So it’s early. Like 5 am early. And B. brings me a cup of tea because this is the time B. always gets up, which somehow makes it less traumatic. I need to wake up at this time to prepare for my performance for the  Perioperative Nurses’ Association. And getting to the airport district hotel where they’re meeting for 7:30 am seems like it should be hard. But today it’s alright. I’m excited because the nurse who invited me called from the recent Star article. She was really nice and very excited on the phone, so I already know it’s going to be a good gig.

I’ve also shared some profoundly sacred moments with Operating Room (OR) nurses who have reached through the chaos and trauma and connected with me. So a whole group of them witnessing my performance sounds like a great way to spend the morning. I do my usual bit, put my music on, change into my gown, open my chart and begin depicting those scenes as I experienced them at the time.

And I can feel them with me, transported back to the OR as they experience the challenges, the connections, the tragedies and the victories they work with everyday. They join me in the infamous tampon-scope scene (that’s just a teaser, you’ll have to see the play) and laugh in horror. They egg me on in my final escape, many wiping tears from their eyes.

And then, the discussion. We have a fantastic discussion afterwards about the ways in which healthcare professionals are constrained from doing the things they actually would like to do to support patients, and also the ways in which nurses are constantly mediating the medical experience for patients. We talk about different places they think this work needs to be seen, as patient support, in medical rounds. They ask thoughtful questions about how I would like to see things change. And we strategize, brainstorm possibilities. These groups of nurses remind me of the compassion and commitment that draws people into the healthcare field. They remind me how vulnerable professionals are in clinical interactions where they are not being adequately supported and not given sufficient resources to give the care they want to give. Most of all, they reminded me why I do this work. Thank you nurses!

Hello my pretties, how I have neglected you over the last two weeks. I’ve been keeping a log of travel stories so that in the landlocked days of July when I have time to write I’ll have things to write about. I’m still on my travels, heading home this weekend.

I met up with one of my medical professional friends in Montreal yesterday, and we exchanged some stories about a recent trend in medical conferences. The Canadian military has been attending conferences of various disciplines all across the country, recruiting for Afghanistan.

In one presentation that I saw, very intimate and graphic medical pictures are shown of civilian children, men and women from Afghanistan. Many images are quite horrific. One military official comments that no matter how often he saw these images he still gets choked up. *Then* he goes on to say,

“As you’ve seen from these images, this really is the gold standard of trauma. A lot of professionals want to go over there to get these experiences. Because you don’t get this in Montreal, in Toronto. I mean, you might get a few cases. But in Afghanistan, you see this every day, all the time.”

Now, if I were to show those images, it would be a cautionary tale about how military operations with guns and bombs actually cannot achieve humanitarian ends. It would be to motivate people to act for peace. And, I would have the full, informed consent of all those photographed. It would not be to attract professionals who want experience with vulnerable populations whose brutal pain is described as, “the gold standard of trauma”.

My performance immediately follows their presentation. So as they disembark from the stage the slide goes up of me standing in my hospital gown in front of a bed with the words “My Leaky Body” next to me. I am still standing at the back of the room, so when the fully uniformed officer passes me he doesn’t realize that I am the woman on the screen.

He looks at me, shudders, and says, “My Leaky Body, Eeeeeiiihhh, I don’t want to see that.”

I issued this call on my facebook page earlier in the week, but still haven’t had any takers, so I’m trying it out here:

“You know, the one where you’re just lying there thinking, if I wasn’t in so much pain I’d seriously be laughing. This needs to go into a play (or maybe that’s just me). I’m soliciting here. Give us your worst.”

So mulling this over this week I thought of two that are as yet unwritten–

1) Glenn and Glenda

So I arrive the Emergency Department severely dehydrated. This is kind of a theme with bowel diseases. By the time I present in Emerge, veins are very flat and IV is very difficult to start. I get a stretcher almost immediately. A nurse called Glenda comes over and starts searching my inner arms for a viable vein. She fails and so calls another nurse over.

Nurse Glenda: “Glenn! I need some help here!”"

Julie’s Leaky Body [lying flat on her back]: “Seriously? Glenn and Glenda? Seriously??”

Glenn: “By the time you get your meds you’ll think you hallucinated us, we’re like a circus act, Glenn and Glenda” [he dances about cheerfully]

[JLB is so dehydrated, sleep-deprived and in so much pain that she starts believing she’s already taken the path less travelled out of the constraints of Enlightenment-era constructs of reason and rationality and into a fluffly pink land with fairies and elves]

Glenn: Sorry, is this hurting? It’s the only way I’m going to find a vein.

JLB [jolted back into Emerge by Glenn smacking the inside of her arm] : Actually, it’s a pleasant distraction from the pain in my abdomen.

[Glenn, buoyed by receiving JLB’s permission starts smacking harder and looking gleeful when another nurse appears looking horrified}

Other Nurse: Stop it! You’re hurting her! [he grabs hold of Glenn] 

JLB: I’m not kidding, it actually feels kind of nice.

[All three nurses find a vein and start JLB’s Demoral and Gravol at which point she travels back to the happy fluffy pink land of elves and fairies]

***

The second story I’ll call

2) “Right there…” or “The Ultimate Lie Detector test 

But I’ve run out steam now so you’ll have to wait to read Story # 2, and the weather’s nice. And the cats want me to sit outside with them. And I have 12 million emails to answer. I’ve read them all by the way and thank you, and I will respond in time.

But now it’s time for you to answer the call… give us your worst. I’m interested equally in physician/nurse stories as I am in patient ones. Don’t be shy. You can be totally anonymous on the blog.

It’s my birthday!  I woke up this morning and went downstairs. B. left my present on the stove before going to work (at 5:15 am). I didn’t notice it at first because I was busy dancing to Bjork. Because it’s my birthday. And that’s what I do on my birthday. The cats were pretty alarmed with all the flailing (I never claimed to dance well), and yet accepting, we’ve acclimatized the cats to all manner of weirdness over the last 5 years.

Right, so the present. Well, it was wrapped in a Silver Snail bag which was unusual because B. is often more elaborate in the wrapping. But the card was hand-made, and very clever. A cut out 29 that opens into a heart. Lovely. So I open the bag and find… a stethoscope! Not just any stethoscope, a model SP 12/ SP 16 *deluxe* stethoscope. I have no idea what that means. What I do know is that I now have a prop for when I’m recounting doctor stories from my stretcher on stage.  And what lurked beneath the stethoscope? Tales of the Slayers by Joss Whedon. Oh, young love. And what a witty combination. Slaying and stethoscopes. I love my birthday. And Buffy. It was watching the slaying that supported my healing process. Really. Every time I had to lie in bed retaining steroid enemas what else could I do to satiate my desire to be *anywhere* else, but watch a hammer-and-sickle-wielding Buffy leading the street kids out of the evil life-sucking factory? You know how that goes.

Since the Star Article on Saturday I’ve been getting lots of lovely letters in my Inbox and on Facebook. Some from friends and lots from people I don’t know. Which is wonderful. I love hearing people’s healing stories, and how they relate to mine. I also appreciate all the questions and will answer every single one. I’m going to establish a FAQs page on here over the course of the week too.

Happy Julie’s Birthday everyone!