The Dialysis Project: Portrait of a Chronic Illness

Leah Lewis:
My bloods have high, severely high levels of antibodies, which makes it difficult for me to be matched for a kidney transplant. So my case in particular makes me very difficult to match. So I'm on multiple lists. The reality being, given the state of organ donation in our country, is the likelihood that I will receive a match, while it isn't impossible, it's quite unlikely. So what that has done to sort my existential reflection has kind of forced me to accept the possibility that dialysis will be my companion for the rest of my life, for the rest of my living life.

Joeita Gupta:
I'm Joeita Gupta and this is The Pulse. How often do you think about dialysis? Dialysis is a life-maintaining process and it is prevalent in our communities. However, few people know much, if anything, about the process or its impact on patients. It can be deeply isolating living with a chronic illness and dealing with a medical process that can take up a lot of time and energy. Despite advancements in treating kidney disease, the number of Canadians receiving dialysis has nearly doubled in the last 20 years. And for each person who goes to a hospital for dialysis treatment or administers a procedure themselves at home, there is an individual story of grief, resilience and confronting the odds. Today we discuss The Dialysis Project. It's time to put your finger on the pulse.

Joeita Gupta:
Hello and welcome to The Pulse on AMI audio. I'm Joeita Gupta. I'm the host of your program. I'm joining you today from the Accessible Media Studios in downtown Toronto. Today I'm in a gray and black sweater with a round neck and I am sitting in front of a white background. We're talking about something called The Dialysis Project, which is a one woman, which is one woman's account of administering dialysis procedures at home. I'm joined today by a researcher at Memorial University and the co-creator of The Dialysis Project, Leah Lewis. Leah, hello and welcome to the program. Thank you so much for joining us today.

Leah Lewis:
Hello Joeita. It's a pleasure to be here. Thank you for having me.

Joeita Gupta:
I know I can't do The Dialysis Project justice through any description that I might offer. So why don't you start out by telling me a little bit about what it actually is?

Leah Lewis:
Okay. The Dialysis Project is a project that has developed over a very long time with my creative collaborators, Evalyn Parry and Robert Chafe. And it grew out of a desire to gain agency and engagement from my own lived experience of being a dialysis patient myself, now in my 13th year. And I've been self-administering dialysis for 11 of those 13 years in my own home. And it's definitely an experience that shapes identity and how we engage with the world and our relationships in the world, as it has done with my co-creators. So the seed of. The Dialysis Project was planted many years ago and it's been in development over years and was produced last spring digitally online through a live performance from my home, from my own personal home where I administer my treatments. So the audience were able to witness that. And the reason for engaging in it was kind of twofold.

Leah Lewis:
One, really it was my own process to kind of integrate and explore my own lived experience of grief and loss as it relates to my own illness and health. But also as a scholar in health research, I was very interested in giving a louder voice to patients, in terms of just kind of creating research that privileges patient voice of lived experience of complex chronic conditions like kidney disease and dialysis procedure and just really honouring the value and the knowledge that comes from that site of knowledge that is different from many forms of health-based research. Or I think it adds to the conversation in important ways. So that was another reason to really create a scholarship of lived experience about chronic illness and dialysis.

Joeita Gupta:
If someone were to tune into your performance of The Dialysis Project, in a nutshell, what would they see?

Leah Lewis:
Well, first and foremost, they would witness a live performed procedure of hemodialysis, which is one of two forms of dialysis. Hemodialysis is the one that's known mostly, I think, through public knowledge, which is the form of dialysis that is a blood cleansing that involves a filtering and cleaning of the blood. And so the performance itself, it demonstrates that, in that I do administer a treatment during the performance. I start my treatment at the top of the performance and then the treatment continues beyond the end of the performance because my treatments are three to three and a half hours long and I'm not going to ask an audience to sit with me for that long. That's the first and foremost what the performance depicts. And then the narrative of the performance is monologues that really depict identity-forming themes through the lens of chronic illness.

Joeita Gupta:
And this is not a how-to. It's not a demonstration of dialysis. It really goes beyond that.

Leah Lewis:
No, it's not.

Joeita Gupta:
Right.

Leah Lewis:
It does. Yeah, it certainly does. I mean, we certainly, for the sake of the audience and knowing what the audience needs to know about what's happening in real time, there's definitely an explanation of what is happening that's embedded in the narrative. But the majority of what's shared in the performance is personal auto-ethnographic stories that have evolved from my lived experience of dialysis and really meant to kind of depict one example of what many dialysis patients live through.

Leah Lewis:
So it's kind of meant to shed light on just the sheer kind of invisibility of dialysis in terms of, regardless of whether patients are attending an outpatient unit or whether they're completing their completing home-based treatments, it's an unknown. Despite how prolific it is in Canada and in Newfoundland and Labrador where I live, it's an unknown condition. People don't understand the complexity and the sheer amount of time that people who are on dialysis dedicate to maintaining their health and well-being via a machine, a medical machine, for that procedure. So there are pieces of information that we wanted to mobilize into the public sphere so folks could really engage more with the reality of what it means to live as a patient on dialysis.

Joeita Gupta:
I don't know if you heard, but I let out a little gasp there in the middle of your answer. And the reason for that is you basically read my mind and I said, "Wow, she's got superpowers. She can read minds." I wanted to ask you why it is that... Because we know that dialysis is prevalent in our communities, it happens to a lot of people. Why is it that dialysis patients remain so invisible and why is so little known about the process?

Leah Lewis:
Well, I have my own opinions, based on my understanding and knowledge of the condition. I think it is a complex chronic condition that most folks, especially folks like myself, who in a way, my case is a bit of an outlier. Many patients who develop end-stage renal disease, they develop it secondarily to conditions like diabetes, which is often a precursor to renal disease. I would be an outlier because I don't have diabetes and my renal failure occurred in infancy.

Leah Lewis:
But I guess what we all kind of experience as dialysis patients is it's a chronic condition where health and lifestyle is maintained according to our dialysis treatments and dietary restrictions. And it's been around for so long and it's not a terminal illness per se, even though it does kind of significantly shorten longevity. And there are folks who are quite sick on dialysis and are not able to last. And folks who are on dialysis have a shorter life length than folks who do receive a kidney transplant. And I'm not sure why, maybe it's less drama in a chronic condition that is maintained, but I'm not sure why the invisibility is there. But it certainly is a condition that is not widely understood, the same way other conditions exists more in the public sphere.

Joeita Gupta:
Like cancer, for example. I mean, there's a lot of fundraising that happens and a lot of visibility for cancer treatments. Not that one is worse or better than the other, but it certainly-

Leah Lewis:
Yeah, certainly not.

Joeita Gupta:
... it doesn't have the same public profile. You mentioned earlier that each of your dialysis treatments takes about three and a half hours and you wouldn't ask an audience to stay with you for three and a half hours. But perhaps you would want to maybe take the next few minutes to give us an idea about how in-home dialysis procedures impact your day-to-day life.

Leah Lewis:
Right. Well, the first statement I can make is they are completely and utterly time-consuming, necessarily so, of course. As a home patient, I actually perform more actual procedural treatments that a patient who would attend an outpatient unit. And in some ways, that's one of the advantages of being able to self-administer because I get a few more treatments per month than a unit treatment and as a result, I feel better. And my day-to-day functioning increases. But in terms of time, if I'm completing a three to a three-and-a-half-hour treatment every other day, when you calculate in the prep time and the dismantling time, it really is about five hours per treatment. If you multiply that by four per week, 20 hours of my week is dedicated to dialysis.

Leah Lewis:
And that's my case. Other patients actually, their prescription is for a longer treatment or more frequent treatments. Some patients that are utilizing the same device that I use have to do five or six treatments a week in order to maintain the level of clearance or health in terms of blood levels that I would require. I just happen to be a small person. So the amount of dialysis that I require versus somebody who might be larger than me and require more is every other day. Whereas others may have to do six days a week.

Leah Lewis:
So the time consumption differs from case to case, but it certainly is something that you have no choice but to incorporate into your weekly schedule. For folks who go to a unit, they have a much more rigid schedule to stick by. Their dialysis happens when it happens and they have to show up. I have a little bit of flexibility whereby I can do my treatment earlier in the day or I can do two consecutive treatments so that I can go away for a weekend. So I have a little bit of flexibility and more autonomy than patients who attend outpatient units. And I think folks who decide to train to self-administer their treatments, that's the big reason why, to regain back personal time and to increase their sense of agency and autonomy over their illness. I think it does achieve that to the best it's able to.

Joeita Gupta:
Earlier in our conversation, you mentioned that it's not a terminal disease, but many kidney diseases do shorten your lifespan. What has your experience of dialysis and living with a chronic health condition done in terms of your thoughts about mortality, grief around end of life, coming to terms with a changed circumstances? Have you had a chance to think through some of those ideas?

Leah Lewis:
Not only have I had a chance to, but my doctoral dissertation is dedicated to the notion of grief as it relates to transplant loss and engaging with dialysis, as a patient who is what is called hypersensitized, which means that my blood levels, because I have had a transplant previously, because I've had kidney disease since infancy, my bloods have severely high levels of antibodies, which makes it difficult for me to be matched for kidney transplant. So my case in particular makes me very difficult to match. So I'm on multiple lists and the reality being, given the state of organ donation in our country, is the likelihood that I will receive a match, while it isn't impossible, is quite unlikely.

Leah Lewis:
So what that has done to my existential reflection has kind of forced me to accept the possibility that dialysis will be my companion for the rest of my life, for the rest of my living life. So I've certainly had to come up against reflections around mortality and life meaning as a result of that journey. And my doctoral film really looks at meaning, just the concept of how do you engage with life meaning in the face of complex chronic illness. And in my case, because I've been on dialysis for so long, one of the issues that I face, and I'm not alone in this, lots of dialysis patients face the issue of struggling to maintain their dialysis site.

Leah Lewis:
So being able to access hemodialysis is not something that can happen overnight. There has to be a surgically formulated site, either through a port in the neck or something called a graft or a fistula, which requires vascular surgery in order to create a robust flow of blood, enough to sustain the dialysis treatments so that it could be effective and have the clearance outcomes that patients need in order to live their lives.

Leah Lewis:
But the thing about these dialysis sites is they have to be well cared for, but they don't last forever. And typically they will have a span of three to five years. And in my case in particular, which to be fair is unusual, I'm on my second last site because I've used up all of my dialysis sites over time for a number of reasons. I'm a small person, I have low blood pressure, There's a number of variables that contribute to that. So that's another kind of issue that I've had to come up against and just accept as the unknowns that come with these kinds of unexpected and uncertainties that are part of complex chronic illness such as dialysis. You can't really access dialysis with good outcomes without a healthy dialysis site, right, in your arm or in your leg or in your chest.

Leah Lewis:
And in Canada, the site of choice is a fistula in the arm because it's less likely to produce infection. There are folks whose fistulas don't last and they're relatively young like myself. And then we end up facing these kinds of complex decisions with our care teams to figure out how to extend the access to dialysis. Right? So these are some of the issues that I've had to face that have really challenged my existential reflection and how I create meaning in my day-to-day, my limited freedom, which is I think a major theme for a lot of dialysis patients.

Leah Lewis:
Travel is complex, it's a clunky process and it's expensive because you got to pay for treatments in other countries if you want to travel overseas. And the hospitals across Canada are often at capacity. So if you want to travel to another unit in Canada, there's often no room because dialysis is such a prolific condition in this country. So travel is limited and it's a difficult and challenging process for many of us. So for me, I've chosen to travel very little, if at all, and instead kind of keep my travel within the bounds of my province until such a time that it gets a little bit easier. So these are all kind of facing the limitations of your life, but also getting the most out of it in terms of meaning and relationship. I think those have been the kind of tensions that I've faced.

Joeita Gupta:
And you've got all this life experience to distill into a performance, which could be an hour, it could be an hour and a half. How did the act of compressing or trying to tell a story about dialysis to an audience that had no prior experience? Because I mean, the assumption is that some people will know about it, but the majority will not.

Leah Lewis:
That's right, yeah.

Joeita Gupta:
How did that process help you make meaning of dialysis?

Leah Lewis:
I think part of it was the team. So Robert Chafe, who is a Canadian playwright and dramaturg based out of Newfoundland, is a dear friend and colleague. We've known one another a very long time. We met as teenagers and have been close friends ever since. And Evalyn Parry, who's also a theatre practitioner, really engages in critical forms of performance, anti-racist and feminist styles of performance. And she was the artistic director at Buddies in Bad Times for some time. She and I did our theatre training together and are also both friends and colleagues. So the team coming together, we were invested on multiple levels. First and foremost, create an engaging and innovative and provocative piece of theatre, but also to respect and honour the process of creating a piece of theatre that was incorporating a medical procedure, which to our knowledge, had never happened before.

Leah Lewis:
Of course, there were many challenges that occurred throughout the years and it took years to formulate the piece. The reason it took so long is my illness narrative shifted and changed over time. So what I just shared about the caveats that I've been facing with my dialysis site, that issue surfaced after the earlier stages of the project. So it did inform the writing and the stakes that we wanted to highlight through the show. So there was a fluidity and flexibility that became necessary over time, as we began to identify and select the narratives that I was writing. And there was loads and pages and pages and pages of writing that we started with and what was curated and selected to be part of the piece were a selection of narratives that really came together to highlight the lived experience in the most evocative and honest way we chose, but also incorporated the stakes that come along with dealing with repeated urgent visits due to site blockages and a dialysis site not working for somebody like me who's relatively young when compared to the rest of the dialysis population.

Leah Lewis:
So it kind of took time for the pieces to fall into place and it took time also for the creative roles to fall into place. We started out as kind of being independent. I was going to write the piece, Evalyn was going to direct it and Robert was going to facilitate through his dramaturgical consultations. And where we ended up was we co-wrote the piece. And so we really are a co-creative team, from concept to the narratives that were utilized, to how dialysis is represented in the piece, to how dialysis is explained in the piece.

Leah Lewis:
That took a lot of time and energy deciding what needed to be there, in terms of what the audience needed for explanation and what didn't need to be there because we didn't want to muddy the waters in terms of what our goals were for the piece. So it took much longer. I mean, I think our first meeting workshop for the piece was in 2016, and then it was in May of 2021 that we ran the piece and my colleagues at Memorial and I are still collecting data and screening the piece for patients and nurses. So it's been a long journey and probably will continue to evolve.

Joeita Gupta:
It only seems fair that in the last few minutes that we have left that you share a bit of an excerpt from The Dialysis Project. What would you like to share with us with today?

Leah Lewis:
Well, I've selected a piece that is really about kind of hopes and dreams connected to the limited freedom that comes with the experience of dialysis, and it's a monologue about a flying dream.

Leah Lewis:
Sometimes I dream impossible things, a dream that's come and gone since I was four. I can fly, eyes closed, one, two, three. I fill my lungs, they fill with ease and they send a shot of energy through my body. I move my arms and my strength lifts my weight, and I can, yes, I can, I can. With a running start, I leap and I'm airborne and with only my will, I begin to float. A shriek of laughter. I'm surprised at my strength. My muscles are alive, my legs could work hard, I can rise higher and to a higher point out the door, down the street, zipping past my pacing neighbour and local tomcat perched on the fence.

Leah Lewis:
I whir past Holy Heart School and the skating arena with its year-round snow hill. I smile and I wave. "What a beautiful day, isn't it?" The wind is cold on my face, but the sun is warm on my body. I don't need a sweater or a jacket. The higher I climb, the stronger I feel. I fly downtown and [inaudible 00:26:55] Robert's store. "Come out, come fly with me." We make our way up Signal Hill. I show him how. The fall colours are glowing. We drop by Flora's house and we pull her out too. I make my rounds and I grab everyone and I make them float too because my power is so strong, I can just give it away.

Leah Lewis:
Willow and Dave and Roxy, Diana, Danielle, I gather them all and we go. We take flight together. We rise above the clouds and we laugh out loud at the vastness of it all. The treetops over Bannerman and Bowring Parks, the rocky barrens, the berry pickers, the harsh vastness of the Northern Peninsula. We drop down and we pick up DeeDee. The island of Newfoundland grows small and it falls away as we again gain a tremendous height. We fly to Montreal and to Toronto. We collect Evelyn and Caroline and Gerard, Melissa and Sherry. We head to New York and we perch on the crown of the Statue of Liberty. We sip on Americanos and nibble on soft pretzels. Then we had over to San Francisco and we visit the Golden Gate Bridge. We go to the Grand Canyon, the Great Wall of China, the pyramids, and I feel the crisp wind against my cheeks.

Joeita Gupta:
That is so powerful. I love the line about having so much power and giving it away, but it's especially poignant in light of your preceding discussion about some of the challenges around travelling. If anyone wanted to be a part of the audience and watch an upcoming performance of The Dialysis Project, how do they do that?

Leah Lewis:
Well, the performances now exist in a recorded format, which can be forwarded for folks' viewing pleasure. It is a closed YouTube link that can only be accessed through invitation. So due to the complexity of what it takes to perform The Dialysis Project, not that it'll never be performed again, but at the moment, the way it can be viewed is through an accessible recorded link. And if folks are interested, they can contact me at my Memorial email.

Joeita Gupta:
Mm-hmm.

Leah Lewis:
Can I provide that online? It's Leah dot Lewis. L-E-A-H, dot L-E-W-I-S at mun dot C-A. That's M-U-N dot C-A.

Joeita Gupta:
Leah, thank you so much for speaking to me about this. I have really learned a lot from our conversation, and I appreciate your candour and your willingness to talk about something that we don't really think about a lot.

Leah Lewis:
Yeah.

Joeita Gupta:
So thank you very much for being on the program.

Leah Lewis:
Thank you for having me. It was a real pleasure.

Joeita Gupta:
Leah Lewis is the co-creator of The Dialysis Project and a researcher at Memorial University. We'll put Leah's Memorial University email address in the description, so you can contact her if you'd like to access the YouTube recording of The Dialysis Project. That's all the time we have for today. Our videographer has been Matthew McGuirk. Our technical producer is Marco [inaudible 00:29:59]. And Andy Frank is the manager for AMI-audio. If you'd like to provide any feedback, you can write to us at feedback@ami.ca. Find us on Twitter at @AMIaudio. Use the hashtag #pulseAMI, or give us a call and leave a voicemail at 1-866-509-4545. That's 1-866-509-4545. And please don't forget to leave your permission to play the audio on the program. Thanks a lot for listening. Enjoy the rest of your day.