Chapter 7: Tonia Sina is already the stuff of myths and legends

I heard about Tonia several years before I officially met her over skype as she's been revolutionizing the theatre industry in Canada, the States and elsewhere with the Intimacy Choreography movement (listen and she'll explain). Living in Oklahoma City, she's a powerhouse for change and empowerment and a champion for women's physical and mental health in an industry where so much shady behaviour (we've all heard of the infamous casting couch) and harrassment is just shrugged off as part of the norm.  If she wasn't so generous and honest, I'd be very intimidated by her - her power and sense of purpose is palpable. A power and energy that seems impossible and in direct contrast to the purpose of our chat: talking about living with chronic illness, dealing with failing health, and how her quest continues to find a third kidney transplant match and running a not-for-profit org from her bed while she's on dialysis.  I don't know how to introduce this conversation and THE Tonia Sina in a way that does her justice. She is already the stuff of myths and legends (which of course means she is a perfect match for this project).

"Okay, you want to change the world but you also have a chronic illness, 
so the sicker I get, I feel like the more successful I am. 
It has this weird balance."

I interviewed Tonia when she was at her lowest - feeling captive in her house because of her health and reeling from the disappointment of a last-minute cancellation of a third transplant surgery. Several months have passed since and when she recently re-listened to our conversation, she was shocked at how depressed and anxious she was back then. But what I hear is amazing strength and fortitude and sheer moxy. I am so in awe.  And she's feeling much better and working again (seriously, how does she do so much?!) so her spirits are much improved, she is happy to report. 

I have spent a lot of time this summer reflecting on this specific conversation, pulling inspiration from it and it is still settling into my bones. We talk about being artists, intimacy choreography, changing the world, transplants, sickness, purpose, how we create a legacy, how we protect our own, systems that need to be dismantled, choosing to survive, kidney disease as a classist disease, anxiety, grief, being a woman in this world, mothers, fathers, husbands, donors, dancing, sarcifice, survival, and the effort it takes to do "the work" while life kicks you around. And we talked about gratitude, bravery, and, of course, worthiness. 

"In my case, the people who have stepped forward [to be a donor], to offer or even just say 'You can take mine', even just casually, are generally people who.. - Cause some people have been close to me and a lot aren't always close. Sometimes they just want to be part of keeping me here longer, which is a very humbling experience, you know.  Knowing how fragile human life is and for somebody to be willing to sacrifice their own health (essentially), to possibly shorten their life to lengthen yours - or even just increase the quality of your life so that you can accomplish things - is a very emotionally overwhelming experience. I think it takes bravery, but I don't think that's the thing. I think it's more... umm. I think it takes a person who - of course they have to love you but that's not always the case - it's someone who wants to contribute to the cause, whatever your cause is. 

Everybody has a different cause. Other people with transplants have their own causes. Sometimes they have kids they need to raise and other people want to contribute to that cause. I have a lot of transplanted friends with this disease who don't have careers, they have kids and so their energy is going into that. They are no less worthy of living a long life. I think everybody is worthy of that. But people who try to get transplanted - because transplants aren't just something that fall in your lap; transplants are something you actively have to fight to get. You gotta go research it. You gotta find a transplant centre. You gotta sell yourself. In that transplant evaluation you have to say 'This is what I'm doing in society and this is why I am worthy of having a transplant.' You literally have to say those things in the office and this last time I found myself, you know, going: 'I'm the Executive Director of a not-for-profit. I'm writing a book. I'm trying to stop abuse and harrassment in the arts, and look at all the things I'm trying to do...' You know, it felt like I was selling myself in a weird commercial of 'Please save me! I'm worth it!' And I feel like no one should have to do that. Everybody should be worthy of trying to extend their life, but when you've had to sell your life, it makes you want to beef up your resume."

- Excerpt from our interview

As Tonia is in Oklahoma and I am in Toronto, we met on skype in April 2018 so this is just a audio recording really. You can listen without watching the screen.

TONIA SINA

Tonia Sina is the founder and Executive Director of Intimacy Directors International (along with co founders, Alicia Rodis and Siobhan Richardson). Most recently, she presented at Sacred Fools Theatre Company in Hollywood and Great River Shakespeare Festival’s Front Porch Series. She was the Intimacy Choreographer for the production of The Bakkhai at the Stratford Festival in Ontario, Canada, as well as being an international sexual harassment prevention advisor for theatre and film. Recently featured in The NY Times, American Theatre Magazine, CBC Radio, Huffington Post, BBC Radio, and many other publications and radio interviews, she is the former Artistic Director of Reduxion Theatre Company in Oklahoma City, and an international Intimacy for the Stage workshop teacher and choreographer. Tonia has been studying Intimacy for the Stage and Sexual Harassment in the industry since she began research for her Master’s thesis in 2004 when she created the term, Intimacy Choreography. IDI’s Pillars for Safe Intimacy Direction are the culmination of her professional work. Originally an actress and stunt woman, after eight years in academia as a movement professor, Tonia wrote the article: Safe Sex: A Look at the Intimacy Choreographer for the Fight Master periodical, and is continuing to publish her work in the form of a book. She has taught Intimacy at several SAFD regional workshops including MACE's Winter Wonderland, The Tourist Trap, The Lonestar Smash, and the Louisiana Tech Stage Combat Workshop, and the 2018 advanced actor combatant workshop). Tonia also advises Universities on their curricula to help avoid harassment and abuse in academia. Also a director, playwright, model, and performer, Tonia is a soon to be triple kidney transplant recipient and rare and chronic disease patient advocate and national motivational speaker. An alumnus of Niagara University’s BFA in theatre performance program, and Virginia Commonwealth University where she studied movement under Fight Master David Leong and Certified Teacher and Fight Director, Aaron Anderson, and earned her MFA in Movement Pedagogy with a specialty in Intimacy for the Stage.

"The disease made me really focus. Procrastinate less.
It made me go.. - it makes you find your own doors to walk through
instead of waiting for them to come to you."

Kidneys and Pin-ups

Before our skype chat, Tonia sent me a few things to give me some history on her journey including a blog project she started called Kidneys and Pin-ups. Even on her worst day, she is all kinds of awesome. I highly recommend taking a look - she hasn't updated it recently, but the pics while on dialysis are fantastic, and the read is worthwhile. http://kidneysandpinups.blogspot.com/

p.s. HAPPY BIRTHDAY TONIA!!

"I was living scared each day to be who I want to be since Matthew’s kidney started to fail, waiting for Tonia version 5.0. I stopped posting pictures, I turned inward, and I listened to all the nasty voices telling me my body was something I should hide because of my particular packaging, age, size, voice, specialty, or genitalia. I was shunned from so many communities for THIS VERY PICTURE (among others). But 5.0 is my choice. It’s not a new kidney, not what others have told me I should be, not what abusers have molded me into throughout the years. I only have a few years left of my thirties, and I plan on enjoying myself while I’m here. Welcome to version 5.0. She’s just now starting to emerge, and a new kidney will only be the tip of this iceberg. Photo part of a nutty hospital series by Chelsea Carter! #watchmesurvive " 
- Tonia, Aug 19, 2018

Chapter 6: It takes a village - Interview with Gail and Barry Russell

“You do what you do, because of love, and because you can.”

— Gail Russell, April 2018

My dad, Randy, was one of seven kids and my mom, Heather, was one of four sisters which means we have a lot of family and we grew up with close relationships with most of them.

Cousins at a Ringette tournament. Left to right (back) Scott, Jennifer, Lindsey, Katie (front) Ashleigh, Travis.

Of all those extended family members, our family was closest (literally and figuratively) to the Russells, Dad's next-in-line sister Gail, her husband Barry (not to be confused with Randy and Gail's brother Barry Leamen) and their 3 kids who age-wise lined up pretty well with us: Jennifer (same age as my sister Lindsey), Scott (year older than me), and Ashleigh (year younger than my brother Travis). We've always done lots of things with the Russells. Many memories and stories from my youth involve their family, their van, March break excursions, scout camps, ringette tournaments, family gatherings, and an especially memorable group trip to the Dominican. 

The Leamen siblings with their mom, Thanksgiving 2016: clockwise starting with Randy (mustache), Martha/Grandma, Eddie, Barry L, Lynne, Cheryl, and Gail.

Over the last year especially as dialysis became a part of our family's life again triggering old memories and then around Dad's funeral, I started hearing more stories from before my memory of how Dad's kidney health shaped that bond. As much as Dad's kidney disease dramatically impacted his life and our immediate family, the effect was also profound on our extended family.  It's an old African proverb that says "It takes a village to raise a child" and this was very true for us. I asked Aunt Gail and Uncle Barry to share some of their memories because this story belongs to them too. We meander topics a bit as that is how reminiscing works, but there is a lot of history covered over these 4 videos.

*It should be noted that Gail and Barry have always gone above and beyond to support every member of the Leamen and Russell families and that what they did for our family is just one chapter in a long history of being generous hearts. I am incredibly grateful for them and their willingness to share these memories first with me, and then with you. 

PART 1

Katie chats with her Aunt Gail and Uncle Barry Russell (Randy's sister and brother-in-law) about their memories of Randy's diagnosis and subsequent move from the Northwest Territories back to Ontario. 

PART 2

In this second segment, Gail and Barry reminisce about life for the whole extended family as Randy's kidney function declined: pulling together, flexibility, cheese, trying to adapt to new routines with kids and work, orange hair and orange fluid, feelings of worth and survivor guilt.

PART 3

Anecdotal evidence that despite disease, dialysis or transplant, as long as life goes on we go with it the best we can: hot and sour soup adventures, Lions' Camp Dorset, and home hemodialysis. (Guest appearance by Seraphina the cat) 

PART 4

Waiting for "The Call" and Gail and Barry's first memory of Randy after his kidney transplant: pagers and pepperoni pizza. 

Chapter 5: "Take Nothing for Granted" Interview with Heather Hobbs: PART 1

Heather, Tundra and Randy in Alberta (1981)

I asked Mom if we could record an interview on Dad's birthday. It seemed fitting on the first occasion of us acknowledging the birthday he didn't get, that we reflect on the kidney that gave him an extra 27 years of very happy birthdays. It was a good plan, though daunting, which on the day made us change our minds and push back filming a couple days. 

As I mentioned in Chapter 4, these interviews are quite challenging: painful memories tied in with current grief, re-living secondary trauma for Mom, trying to stick to a sequential narrative that follows a logical timeline, opening private memories to public interpretation, etc. The camera died which means we ended rather abruptly at the transplant, which was actually very fortuitous as Mom needed some more time to think about what she wants to say about life after the transplant.  Also, when I played her this video for her approval a couple weeks later, she took a lot of notes of things it reminded her she wants to say so this is the first of what will probably be several interviews. It's just too hard to pack an entire complex life of experiences into one conversation.

Randy's wife/Katie's mom Heather talks about the all encompassing impact of dialysis on their lives, including Randy's self-image, mood and the structure of daily life. From pre-dialysis through to the kidney transplant, Heather ponders the theme of "Take Nothing for Granted" - even the ability to pee (a definite indicator of kidney function).

Chapter 4: Is the artistic end-goal worthy of the painful process?

It is one thing to decide as an artist that I want to conduct interviews and share them publicly for artistic reasons - especially when I as the artist do not have the hardest part of this arrangement. It is another thing for someone else to say yes to that and do the difficult thing of re-living painful memories, knowing that the private place where these memories reside is being opened up for the world to see and judge. Why should they say yes to that?

Last month I recorded a couple interviews with my mom, Aunt Gail and Uncle Barry. I really enjoyed hearing the stories and doing the interviews, even though Mom thought I looked horrified at what I was hearing. To be honest, I don't think I was horrified, but my heart was breaking and bursting with love for the young couple my parents were and what they went through.  I shared a lot of laughs with Aunt Gail and Uncle Barry over a very enjoyable four hours on a Saturday afternoon. But a week later, I felt emotionally destroyed by the act of interviewing/empathizing and a little guilty that I was putting loved ones in a similar position. Is it worth it? Is the artistic end-goal worthy of the painful process? While I as the playwright can believe it, does that make it true for other people as well? 

We will be sharing those interviews soon, but before we do, here is me debating with myself whether I as the playwright am worthy of the stories I'm asking people to share with me. 

Before we start sharing very personal stories as interviews, Katie re-examines why it is important to her that these personal stories are shared publicly and asks the question "Why should people trust me with their stories? What makes me worthy of them as a playwright?"

*Note: I filmed while still a little sick and that clearly affected my words a bit as I said April 6, 1888, and I really meant 1988. Only a hundred years off the mark...

Chapter 3: Setting a Baseline for Worthy Research

They thought they were coming over for some grantwriting help and birthday cake, but No Porpoise frequent collaborators Lynne Griffin and Sean Sullivan also got this surprise interview on their knowledge and experience with kidney disease, organ donation and trying to define "Worthy". No advance prep time was given, so this is a first attempt at setting a baseline for what might be "common" knowledge or attitudes towards organ donation.