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SE2EP5_Good Grief_04-29-2021: Otter Voice Meeting Notes

SE2EP5_Good Grief_04-29-2021

Positive Effect35min

James Watson

00:00

Today, you will hear the views and ideas of our pozcast guests. We are eager to showcase their expertise and provide a platform for their views, but they may not always reflect or align with the views of the Positive Effect, or the MAP Center for Urban Health Solutions. Welcome to the pozcast we are created by and for people living with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV-positive. If you're living with HIV, listen up.

Thomas Egdorf

00:37

The strong thing to do—the hard thing to do—is to face your emotions and lean into your emotions. It's much easier to just cut them off.

Thomas Egdorf

00:47

We have a great show for you. This is podcast.

James Watson

01:05

We are so fortunate in Ontario, Canada, to have an organization focused solely on the well being of our community, HIV organizations and frontline staff. The AIDS Bereavement and Resiliency Program of Ontario, or ABRPO, as is locally known, has been helping organizations to strengthen their resiliency in the face of such loss and grief and organizational transition since 1994. Well, it may be bound by its mandate geographically to Ontario, its tools and strategies no no such bounds. Anyone with an internet connection can tap into these great resources. Today I have the privilege of speaking with the ABRPO's Director, Thomas Egdorf. Thomas is living with HIV, and has been working in the HIV sector at a variety of local, provincial and national organizations for over 25 years. In 2010, Thomas was inducted into the prestigious Ontario AIDS Network honour roll and honoured for his work with the Leadership Award. Welcome, Thomas. It's wonderful to have you on the show.

Thomas Egdorf

02:10

Thank you, James. It's wonderful to be here.

James Watson

02:12

So let's dive right in. Now I'm a big fan of ABRPO. It's It's so unique to the sector, can you give us a high level picture of the sort of work you do as an organization?

Thomas Egdorf

02:23

So what we are in place to do is to support frontline HIV and harm reduction organizations in Ontario with ongoing multiple loss. So this is unique in grief work, most grief work is centered around a single loss, or a personal loss, and isn't really focused on work related losses, and certainly isn't focused on ongoing loss, and community devastation. So we're very unique in that, that we really focus on multiple loss within staff teams and communities.

James Watson

03:01

So when you're talking about loss, what's the most common reason organizations will call on you?

Thomas Egdorf

03:07

It can be a variety of things, it can be an accumulation of loss of clients, it could be a significant staff death, or a lot of agencies work with peers. And it could be a peer that was really well known in community are integral to the agency who died. So that's one type of loss. And certainly, loss due to death is the primary loss we deal with. But oftentimes, people don't really think about all the other losses in their life. And they don't necessarily relate the grief response with those losses. So if you think of the loss of a job, the loss of prestige, the loss of status, you know, it could be the loss of a co-worker who has now gone on to a really great job, and you're happy for them, but that's left a hole in the department or the staff team, and you might have a grief or loss related to that. So grief comes to the workplace in a variety of ways. And we try to work with the different agencies and staff teams to provide support and capacity building so that they can support themselves through the grief process.

James Watson

04:26

I see. So what like personally what has drawn you to this kind of work?

Thomas Egdorf

04:31

I have a lot of experience with grief and loss. And I've been living with HIV since 1993. And back then diagnosis to death was three to five years. So not only did I have to face my own mortality at the age of 27, but I was also seeing many, many community members and friends also dying and getting sick. So I began having an interest in processing my own feelings, and just stay well in the work for me and my colleagues. And then over the years, I touched with ABRPO. I've been working there for three years, full-time, but I've done partnership work with ABRPO for decades. And that really sort of helped to integrate me into the work and really understand what they do and how they do it. Because I'm a German boy, I grew up in a very German household where emotions weren't something that you expressed. And certainly feelings of grief, and having that open wasn't a part of my upbringing. So when I had the opportunity to learn—I'm a big believer in lifelong learning—and whenever I had the opportunity to work with ABRPO, I would take that and develop my own skills and bring my own sort of stuff to to the work, as well, and contribute in my own way.

James Watson

06:06

Right. Well, I certainly know about the not showing your emotions a bit coming from the Anglo Saxon world myself. I, you know, as I mentioned, I've been a fan for a long time, I've done a number of workshops around with peer researchers and people involved in the movement that way. And I find that it's, you know, it brings like this sort of official legitimacy to the workplace, to workplace emotional well being that isn't often raised in organizations. Often the onus is put on, like the busy employee to do some sort of self-care, which doesn't really take flight throughout the organization. You know, is there a reluctance from organizations, do you think, to participate in this kind of programming?

Thomas Egdorf

06:49

There's a reluctance from individuals, you know, there's some people in an organization that this work really fits for, and works really well for. And there's some people in organizations that—just like how I was brought up with not dealing with emotions, there's, there's many people in the field that aren't good with dealing with their own emotions or processing. So sometimes we have resistance. And sometimes we have agencies or particularly programs or managers that welcomed us with open arms, and we're able to work really well with them. But really, this you know, no one that I know, unless you're weird, like me, picks up a grief book and goes, "Oh, this should be really interesting to read." You know, I find the process of grief very interesting in the psychology behind it, but I recognize I'm an anomaly and not everyone does. So part of what we try to do is to develop processes, and then teach those to help people remain well in the work, because the death isn't going away.

James Watson

07:59

Right. HIV has changed over the years. And I'm wondering how has ABRPO had to adapt to that changing nature?

Thomas Egdorf

08:09

Well, it used to be diagnosis to death was three to five years around the time I was diagnosed when ABRPO was just sort of starting. And there was a lot of deaths due to AIDS. What's happened over time, is people are still dying—oftentimes, now people living with HIV die of something other than AIDS, although some would argue it's, it's all related. So we're seeing an increase in cardiovascular deaths, an increase in cancer deaths, and other related deaths. So some of our work has remained the same, because people, unfortunately, are still dying. But some of it has shifted, and we have a focus on resiliency. Because it's one thing to survive and live a long life, but it's quite another to have a quality of life or a high quality of life. And by maintaining resilience, that's one way to help ensure a thriving life.

James Watson

09:15

Right. So what is resiliency?

Thomas Egdorf

09:19

For me resiliency is the ability to bounce back, or to get up after a hit or a challenge or something like that. And resiliency is something that ebbs and flows. So it's not static. It's not, you know, sometimes I have super high resiliency to the point I joke, I could be hit by a bus and get up again and keep walking and everything's fine. And other times someone looks at me the wrong way, and I'm crying in a corner, because my resiliency is so low. So it's something that can ebb and flow and it's something that we can do—we can do things intentionally to help maintain our resilience or to even build our resiliency.

James Watson

10:01

and what would be some of those things that would help build our resiliency?

Thomas Egdorf

10:05

One of the main things is keeping connection. Grief work often has people isolate and can have people, especially with multiple loss, can have people feeling incompetent or strange or, you know, "Why am I dealing with this thing this way and other people seem to be fine?" So by bringing people together to have conversations, or to do what we call a holistic check-in, it really helps people see each other and hear each other and where we're at. Grief can often put our mind in a place that isn't logical. And we can go down a down downward spiral. By doing regular check-ins, it helps check some of those ideas that were formulating in our head or some of those attitudes, and it helps normalize the grief process.

James Watson

11:00

And how, you know, how would you know—do you always know if you're experiencing grief?

Thomas Egdorf

11:06

No, no, not at all. Sometimes it comes out as anger. And unless I'm grounded, unless I'm doing my work. For me, personally, when it comes out in anger, I tend to slam cupboard doors, or kick a photocopier or something like that out of frustration. And so I can tell when I'm doing those things, that my resiliency is low. And it's like, okay, Thomas, you're not really that upset at that cupboard door, what's really going on here, where's your anger coming from? And almost always, for me, it comes from a place of grief, or injustice, the constantly fighting societal structures that seem to be against the people I love and care about and work with. So by constantly doing work, well not constantly, but by doing my ongoing work, it helps me to stay resilient, to stay aware of what's going on for me. So another piece of that, that we always do before we do the check in is called grounding. And that's really just—grief can be really heavily emotional work. And oftentimes, when people are confronted with that kind of emotion, they kind of disassociate or they leave their body a bit. And what grounding does is it helps reintegrate ourselves with our bodies, or our emotional and spiritual self, back into our body. And we do that through doing some physical things, some breathing, making sure your feet are flat on the floor, that sort of thing that can help bring me back to presence. Because with grief work, it's very important for anyone supporting someone in grief to be present, because it can be hard stuff that the person is talking about. And the natural inclination is for people to do that disassociation thing. So even in the moment to help regain your focus, to do a quick grounding. And that can be just something as simple as putting your feet flat on the floor and twiddling your toes around to really notice and feel the floor under you—it's something solid to hold you. Sometimes I'll use, at my desk or around, I'll use different rocks as grounding stones, that I can simply place towards my heart, and just have there and it's just a way to help me feel grounded and present.

James Watson

13:49

Right. So it seems to me that you know, with grief work and this process towards resiliency, you really need to be very self-aware in order to articulate what's happening in you. And so how do you get to a place of like, self awareness like that?

Thomas Egdorf

14:08

It wasn't something I was born with, I can tell you that. I was I was very oblivious in my upbringing and part of the the trauma response I had in my upbringing, is to not be aware of some of—a lot of things going on for me. So over the years through regular practice, of doing those grounding, of doing those check-ins and really authentic check ins, not just "Hi, how are you great, how was your weekend?" But really what's going on for you and and at ABRPO. We use a four quadrant model for check-in. So it's physical, emotional, spiritual and mental. So it's really, "How are you doing in all four of those quadrants?" And we can do things to prompt people because oftentimes people don't think about oh, you know, I'm really every time I see one of those toilet paper commercials with a little puppy running, I burst into tears, which is not something that really should be happening. They're cute commercials, but they're not that cute. So when I know that I'm having that sort of a reaction, I know it's more than that cute commercial, that there's some stuff going on. It's like, Oh, so sometimes it'll catch me by surprise, and sometimes not. And it's about then, okay, I need to do some work, what do I need? Do I need to do debriefing? I'm very lucky in that in delivering the work that ABRPO does, I also get to process my own stuff. So I'm doing it through the work I do, as well as through intentional time. So our team comes together, as an example, once a week for a check-in. And there's no agenda, it's just we spend time together as human beings, looking at each other eyeball to eyeball as we do over zoom, and having an actual check-in and getting to know where people are. This also helps me to understand, you know, there's times at my staff as well or, you know, everyone working at ABRPO to have high resiliency and low resiliency. So when someone's at the high resiliency, that might be a time I can engage them in new projects, or something like that some new work. And if they're on a low resiliency, that's where I may offer a little bit more support, or suggest they take some time off, if that's a possibility, or something like that.

James Watson

16:34

Right. So you've just developed this great new check-in online, I'm just wondering—this module. And I'm just wondering if you could speak a little bit about that for the audience who might want to check it out?

Thomas Egdorf

16:44

Sure. And I hope everyone does get to check it out. One of the wonderful things about the internet is anyone around the world can access our site, everything's free, and people are free to use any of our materials and make them into their own. It's not about us owning it, it's about people being able to use it. With the holistic check in module, there's some theory pieces there on check in and the importance of check in, we go through what our model looks like—because it's one model—there's other models out there. And we have a few videos of people talking about the four quadrants and what check-in looks like for them in those four quadrants. And when they know they're doing well in that quadrant, when they're a little whack in that quadrant, or that quadrant's out of whack a little bit. And then there's also job aids for managers to help facilitate team check in which we strongly encourage at staff meetings and other times that teams come together to always start with a fulsome check in and then get into the business. But start by being human beings and connecting as human beings. That's more important during COVID than any other time in our history, I think, because we're not able to see each other in person. And so much grief work traditionally, is about coming together in person, hugging people, the funeral ritual and other rituals and gatherings to come together. And we're not able to do that right now. Really a lot of what ABRPO does, and how we do it is fundamentally shifted as a result of COVID.

James Watson

18:30

So in what way—like how are you compensating for that?

Thomas Egdorf

18:34

Well, one of the things, and we actually started this pre-COVID, but it's sped up a little bit, is our online presence. So we are currently revising our website that we hope to launch in late June. We're developing online modules—I mentioned that the holistic check-in—there's also the next one is grounding. And we're hoping about once a quarter to launch a new module. So there'll be more online learning that way. And doing group work online through platforms like Zoom or other meeting platforms. So that's changed—doing webinars instead of in person meetings. And some of its working and some of it, you know, we really miss that in person that eyeball to eyeball, you know, being in each other's energy and being able to really sit with one another and share meals together and commune together.

James Watson

19:32

Yeah, it's It sure is a challenge. I think we're all craving for for something other than this sort of staring at each other in one or two dimensions, whatever it is. So I wonder what your personal self care routine might look like, what we're about what's that look like for you?

Thomas Egdorf

19:53

There's a number of things I do. Some are sort of automatic and some I have to do intentionally. So as I've mentioned, connection is so important to maintaining resilience. And I make sure I connect with people on a daily basis—friends, colleagues, sometimes it's "I don't want to do it." And it's like, Thomas, you need to do this. You need to reach out to people and be engaged. I'm single and live alone. And I work from home. So I often the only people I see are people on zoom through my computer. So reaching out to connect with people is one way. Exercise is another way that I've started, I do morning walks, a little less successful as evening walks, because once the day's done, then I get changed into my jammies. It takes a lot from me to get out of that again.

James Watson

20:45

Yeah, me too.

Thomas Egdorf

20:46

I do a lot of grounding during the day to help me stay present. And there's a tool we developed, then part of that tool is a list of 50 really easy to do in the moment things to boost your resilience. And one of my favorites in that is a personal dance party. I will turn on the tunes, turn on my favorite dance music, and just dance like there's no tomorrow. And I love that because I'm not a good dancer. So I don't like dancing in public, but I do love to dance. I just can't keep a beat. It's really embarrassing. But when I'm home alone, and no one's looking at me, I don't care about that. And I do that and I laugh and have a good time. So that's one—another one is I use my humor a lot to maintain my resiliency. And I'm a big believer in laughing and trying to make things fun, because there's enough seriousness, and there's enough difficulty in this world, that I want to try to make sure I'm laughing on a daily basis. Ultimately, multiple times a day that I'm able to laugh because there's times with this work, as you know, where I don't want to laugh. So I try to do something or have a conversation—have a funny conversation with someone that makes me laugh.

James Watson

22:10

Right. So you mentioned before, you were talking about grief, we talked a little bit about trauma. Can you explain sort of the difference to me?

Thomas Egdorf

22:21

No [laughs].

James Watson

22:25

Okay, that's okay.

Thomas Egdorf

22:26

There are very definite differences. But I don't have the the definitions in front of me.

James Watson

22:32

That's okay.

Thomas Egdorf

22:33

One of the big key differences in dealing with grief versus trauma, is trauma, a lot of that is around the lack of safety. So if I was dealing with a group that had a lot of trauma history, I would spend a lot of time creating safety in that group. Because without that, nothing else is going to work. They are going to withdraw if they don't feel safe, or you'll have sabotaging behavior. And it's just not going to go well. So I would rather if I had an hour, even if it meant 40 minutes creating that safety, and then the 20 minutes, we actually do stuff. Versus five minutes creating safety and I didn't create it enough, because of the trauma history, and then either no one's participating or it falls flat. So sometimes—often, it's better to do that work upfront. It's like to say with with renovating a house with painting, you know, 80% of the work is actually the prep work and doing the taping and filling the holes and all of that, then the actual meeting goes really easy and really quickly. And in a way it's that way with trauma and grief work that setting the scene setting the stage creating that safety is so crucial because it's it's so often in our society that we don't have that safety to emote, to have strong emotions, whether that's anger or sadness or fear. Society teaches us—and that in its very gender-based—it's okay for women to cry, and guys have to really suck it up and be strong and that sort of thing, which is I always found very curious because to me being the strong thing to do, the hard thing to do, is to face your emotions and lean into your emotions. It's much easier to just cut them off.

James Watson

24:22

Right. Right. I guess that's why your check-ins are so—like real check-ins are so important—because it sort of allows for that kind of emotion to be present at the very beginning of a meeting or a workshop or something like that, you know?

Thomas Egdorf

24:38

Yeah. And we ask, the check-in question we ask is, "How are you doing, really?" Because very often, you know, how are you doing has become a greeting in our society. It's like, "Hey, how's it going? How you doing?" And you never expect a fulsome response. The response that is expected is: "Good, good. How are you?" And you keep walking or or whatever. And that's not a check in. No, that's, that's a Hello. A real check in a real "How are you doing, really?" takes time—takes intentionality to do. And really, it's so much better and so much more effective than those little "hi" and walk away, I'd rather not have those in a meeting, right? You're not going to do it check in then just greet everyone and get into the business. Yeah, but if you're going to do a check in, allow time for that check in.

James Watson

25:33

So what is the benefit? I mean, I guess, but what is the benefit to the organization of having people express themselves emotionally like that at the beginning of a meeting or whatever?

Thomas Egdorf

25:43

Well, what it can do is it can take that pressure cap off a little bit, so it can release some pressure that people are feeling. A check in isn't going to resolve all your grief issues, it's not gonna make you all better, but by doing it on a regular basis—on a daily basis, or a weekly basis—it helps to take the cork out of the kettle, if you will, or to release that steam, a little bit of that pressure build up. And that's what we're really hoping to do. So that people can stay well in the work. Because if you're not doing those check ins, the pressure, the grief, the hard emotions, the difficult emotions build up and build up and build up until certain behaviors can happen. And that can be things like increased absenteeism, as I mentioned before uncontrolled anger. So I used to kick photocopiers, which wasn't something I would recommend. But it was something at the time I was doing because I had ungrounded grief, and I didn't know what to do with it. Now I know a little bit better what to do with it.

James Watson

26:50

Right. And that, you know, during COVID right now, I would imagine that—I mean, there's so much transition going on, everybody's moving online, people aren't going into the office anymore. I mean, there's a lot that needs to be unpacked and talked about and I guess the check in can help facilitate.

Thomas Egdorf

27:11

Yes, absolutely. And part of the challenge is with people working from home, I don't know what your office environment was like, but at times when I needed to get up and move or I want to go grab a coffee or something like that I would make several pitstops along the way and check in with people and just "Hi, how's your day going?" And some really great conversation has happened through those casual interactions that doesn't exist during us all staying at home and work from home. So those casual interactions need to now be intentional because they don't happen casually anymore. One of the ways we can help that happen—we can help people maintain that connection—because those casual little chit chats helped us connect as human beings, and to see each other and to develop relationships. And if those don't exist in that way, we have to figure out ways to have those interactions differently now. So having those holistic check ins is one of those ways that we get to be human beings with one another first, before we go into our job titles or our tasks, or whatever that is.

James Watson

28:24

Yes, you know, there are some people on my team who I've never actually met, right? I've only ever met them through video conferencing, which is a very strange kind of way to relate, you know. And so, you know, check in is certainly a way of breaking that ice in a way.

Thomas Egdorf

28:41

Yes. And as you practice it, like with everything it, becomes more comfortable to use. The first few times I did a check in it was very robotic. It wasn't deep. It wasn't—I didn't know what to do or what the norms were. But it was through time in doing it over and over and over again, and getting feedback on how I'm doing it, that I was able to get to a level of where I can teach it where I can lead check in sessions very competently and confidently, so it didn't just happen with doing it once. And that's what I encourage anyone listening: these tools, at first, they may not feel comfortable, sometimes they do. The analogy I use sometimes I'll try on a tool and it will feel like my favorite pair of jeans that just fits perfectly. Sometimes I'll try on a tool and it'll feel like a new shirt that's been heavily starched, so it fits, it's okay, but it's not the best. And sometimes I'll try on a tool and it feels like that wool scratchy sweater your Nan knit for you when you were young. And it's like I put it on and I want to take it off right away. So those are the tools I don't focus on. I focus on the ones that feel like the jeans, or maybe the starch shirt a little bit, and maybe they'll get more comfortable to the starch shirt as time goes on. But the itchy sweater, I'm never going to like, so I'm not going to focus on that. And that's what I would encourage people to do is, try the tools on, try them a few times, you'll start to see what works for you and what doesn't, or maybe you have to adapt the tool little bit and that's okay, too. It's really about what works for you.

James Watson

30:31

Right. So what are some of the, what would you say are some of the personal qualities that enable one to thrive in the face of adversity?

Thomas Egdorf

30:43

Gosh, that's an interesting question, I think, really thriving, that's about resilience. So people that have the ability to maintain their resilience, and to keep bouncing back, are the ones that are going to thrive. So if you're not one of those people, look at what are some strategies you can do to build your resilience. As our website gets updated and stuff, we'll have more more information on that. I would encourage people to Google maintaining resilience or keeping up your resilience and what to do. Recognizing that it's a bunch of little tasks, it's not one thing. And also, I don't care how many bubble baths you've had, if you've experienced 50 deaths in the last year, those aren't going to help in and of themselves. They can be nice in the moment, but there's some other things to do, as well. Doing your grief work is really important. And that can look different for different people. There's two main types of grievers out there. There's intuitive grievers who in North America, we traditionally think of as the griever. So those are people that are outwardly crying that are sad. There might be outbursts of emotion and that sort of thing. So those grievers tend to get a lot of support in our society because there are people that look like they're in grief and look like they want support. The other type of griever we have is called an instrumental griever. And that's really if you think of the the physical or mental grievers, so the ones that aren't going to show outward emotion necessarily, that the physical grievers want to do or need to do something physical, so maybe that's going for a walk. For me, it's typically cleaning the house or going for a walk or doing something else really physical like that. It may be organizing the funeral ritual. But intuitive grievers generally need to be busy during times of grief and not stop. Also a lot of them, if you're more on the mental side of grieving, you're going to be someone that's going to be seeking grief theory and see where you fit within that theory and how to locate yourself. Whereas the traditional grievers, the traditional grieving methods, spiritual grievers, there's lots and lots of spiritual and religious rituals that are used to help with grief and loss. And emotional grievers, those are often people that will show up to support groups and other groups to come in and grieve communally.

James Watson

33:30

Right, okay. Well that's that's really helpful, Thomas. Thank you so much for being on the show. I want to end with five rapid fire questions. Okay, it's just a yes or no—well, not yes or no, but one of the other—you don't get to choose both.

Thomas Egdorf

33:48

Okay. I'll try.

James Watson

33:51

More time or more money?

Thomas Egdorf

33:53

Money.

James Watson

33:56

Travel alone or with others?

Thomas Egdorf

33:58

Alone.

James Watson

33:59

Joy or calm?

Thomas Egdorf

34:02

Joy.

James Watson

34:04

Judy Garland or Cher?

Thomas Egdorf

34:07

Judy Garland.

James Watson

34:09

The ability to fly or time travel?

Thomas Egdorf

34:13

Time travel.

James Watson

34:14

All right. That's good.

Thomas Egdorf

34:17

Hard.

James Watson

34:18

I know right? You're gonna have a lot of Cher fans pissed off you, but there you are.

Thomas Egdorf

34:25

Well I went for the classic. I'm older, so I went for, you know, the original-ish gay icon which is Judy Garland.

James Watson

34:32

Yes, absolutely.

Thomas Egdorf

34:34

But I love Cher, for the record.

James Watson

34:38

Well, on that note, thank you so much, Thomas.

Thomas Egdorf

34:40

Thank you so much for having me here, James.

James Watson

34:44

That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at pozcasts4u@gmail.com. That's the number four and the letter U. Pozcast is produced by The Positive Effect at the MAP Center for Urban Health Solutions. The Positive Effect is a facts-based lived experience movement powered by people living with HIV and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme podcasting company in Toronto.

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