Wakil
Welcome to this episode of End of Life Conversations. I'm Reverend Wakill David Mathews.
Annalouiza
And I'm the Reverend Mother Annalouiza Armendariz.
Wakil
In this episode, we are very excited to introduce my good friend, Ayah Shakur.
Annalouiza
The Reverend Ayah Shakur Seivini has been studying and practicing what he calls applied mysticism for over 30 years. He is ordained as a healing and life transitions minister in the Iñayatí Sufi spiritual order. He works as an inpatient palliative care chaplain at a large inner city hospital in Seattle, Washington, and for over 20 years has maintained a spiritual and bereavement care practice with home-based hospice programs in Washington, Oregon, and Ohio.
Wakil
And I just want to add that I had the wonderful opportunity to work side-by-side with Ayah for nearly a year as a hospice chaplain. He demonstrated a deep attunement to the mystical path, a profound level of compassion, caring, and wisdom. I will just always treasure that time we had together. So Ayah, welcome. It's good to have you here.
We're going to ask a bunch of questions, so let's start with this one. When did you first become aware of death?
Ayah
Well, thank you so much for having me on your podcast, Wakil and Annalouiza. I understand this is the first guest appearance you've had on your show. Yeah. I feel very blessed to be here. It tells me that this is an opportunity for me to bless you and this endeavor that you've joined up together to initiate for the service of those interested in this work.
Annalouiza
Thank you so much.
Wakil
Wonderful.
Ayah
What an interesting question, which I don't often think about these days, which is, you know, when did I first become aware of death? I grew up in a Scotch-Irish culture on the far eastern seaboard of Canada in the maritime provinces on Cape Brighton Island in Nova Scotia. and practice of the wake, the kind of Irish wake cultural practice. And so from a pretty early age, when there would be a death in our small community, we would go as a whole family to the wake and we would pass through the funeral home and visit with the person, whether or not we knew them really well.
So I have memories of going to church, having a mass said for a person, having an open casket, which was very common in those days, even in the worship service, as I recall. And we would all pay our respects to the person, to the soul. We would see the body.
And I was very curious about what I was seeing and kind of scared and didn't quite know what I thought about it.
I later remember when a pet died and I started to ask questions then about where was my pet going? Do pets go to heaven? Do dogs go to heaven? And I was always kind of asking theological questions as a young person. So it's not just one, I think, death experience that got me thinking about this.
As I thought about this question, I've had some conflicting experiences with death and dying that really made me need to question my thoughts and beliefs around death and dying.
One of them was watching an episode of a soap opera. I'll never forget this. There was a dead body on, it was General Hospital or something like that. I grew up in the 1980s. There was an image of this body. I'll just never forget. And for whatever reason, there were several episodes that two or three or four days in a row where this body was sort of like part of the show, but no one was moving it. And it was just sort of like there, and it was kind of creating this tension in the TV show.
And... to this day, I don't know why, but it terrified me, absolutely terrified me. The idea that maybe no one was attending to it in a sacred way, maybe it's the idea that it was such a different treatment of death than what I had seen when we went to mass and when we went to the funeral home. There were no, the body was kind of gazed upon and I think it was sort of decomposing for some reason. Like maybe it was just like.
Annalouiza
Wait, it was decomposing on the show?
Ayah
I think so. I think people were sort of, they don't know what, you know, what are we gonna do with this body? And it was just sort of there. But as a six, seven year old, it struck fear in me. I began to have panic around it.
Over time, I really, really struggled with death. And I think that experience of having a body unattended to for some reason, outside of sort of a cultural care practice, deeply disturbed me as a young person. And that's why I wanted to kind of give it a little bit of time as we get started. I think it has affected me.
Annalouiza
Now I'm really curious what you were watching in the 80s and why they did it that way. I mean, maybe they were trying to replicate a wake of some sort, some kind of...
Ayah
No, I think it was a crime. I mean, or they found someone dead and they... would have been implications if they touched it or something, left it alone in someone's office or something. I think it was just like that.
Wakil
Wow. Great story.
Annalouiza
It speaks to your heart too, though, that you cared about this, the body, the house of a spirit, right? Like it bothered you. You were on a path already.
So now, all these years later, you're a hospice chaplain. And so tell me more about your day-to-day doing that then tie it into how this whole journey has evolved.
Ayah
There was an in-between place between then and now, which really catalyzed things for me, and that was the AIDS crisis of the 1980s and nineties.
And I came of age in the mid-1990s. And I also came out in the early to mid-1990s and just kind of before the kind of cocktail medicines were working to make AIDS or HIV a more chronic illness.
So by the time I had graduated college, almost everyone who had HIV was dying still. It was, as we all know, quite a crisis for many people, but particularly for the LGBTQ community at that time.
And I felt a deep calling to participate. and kind of both serve my community, but also to like understand, you know, what's going on here and what's my part in all of this? How do I become an adult in a moment when my community is experiencing a pandemic? What does it mean for me to start a career and look after myself when people with my identity, cultural identity markers, my people are struggling and being very, very sick.
So. I decided after college that before really pursuing a career, I would want to be a volunteer for AIDS Community Service Center in Ohio, where I was living at the time.
And that is where I started to experience more frequent death. Started out with, you know, giving some groceries to people and I would accompany people on doctor's appointments as a new volunteer. But soon as I got more comfortable with the program and maybe the volunteer manager saw some of my skills and some, you know, my heart was sort of becoming known, I was asked to sit with people in the hospice setting.
So do like overnight shifts in the hospice and kind of be paired up with people for longer terms as like a companion partner volunteer. And then I became the hospital sitter too. So someone would be admitted it to hospital and I would go visit with them.
Annalouiza
That’s so beautiful
Ayah
Yeah, it was beautiful. It was eye opening. I mean, it was heartbreaking. It was all the things that AIDS brings. And in those days, I was acutely aware of those who showed compassion for the people that were in the hospice setting, really paying attention to the qualities of the nurse that was visiting, the chaplain that would come in and check in. So I could see that there could be a career where someone might provide this kind of like healthcare support, but with a deeply compassionate presence and awareness about them and even a sense of spirituality.
As we know, death and dying are intricately linked with our understandings of spirit because we are saying goodbye to our bodies and are experiencing transcendence in so many different ways, right?
The dying process disavows a person of their sense of complete individualization, if that's a word.
Annalouiza
It is now.
Ayah
The challenges of being sick and the challenges of dying almost always include like losing your complete sense of independence, if you had that at all in the first place. You need to rely on other people. You need to be relying on your values, your beliefs, right? And all of those experiences that come with the pressures and the suffering and the tearing down of autonomy, which would be one way you could think about what it means to die.
It includes the possibility of transcendence because you must move beyond yourself. You must allow other people to help you. You don't have to, but the invitation is there.
Wakil
Right.
Ayah
So I think there's this invitation for transcendence that present and that's externally, but then there's an invitation to transcendence that starts to come, I believe internally as the stages of illness progress. So I don't know if I'm moving too fast with philosophy on end of life.
Wakil
That's perfect. Yeah. Keep going. Thank you.
Annalouiza
Yeah. Well, and because of what you just said though, not everybody who shows up hospice setting will have this awareness for themselves, right? They won't know they're just like, culturally, people tend to want to fight death and stick around for a lot longer, you know, unless they have this other awareness, but do you, what is a challenge then to meet people's needs at the end of life when your philosophy is one way and in general, maybe others aren't.
Ayah
One thing that I've, you learn the hard way when you start to do a lot of caregiving. I think any kind of caregiving, but in this case, end-of-life care is that you just don't get your way.
One needs to know like one's own self as a, as a chaplain, as a spiritual caregiver or provider, but your patients and your families are always going to be telling you who they are and what they need.
And the way that I look at having a philosophy. I hold philosophy very lightly, and this might be part of my training as a Sufi.
One way I would describe what it means to have a practice in mysticism is that mysticism is about curiosity, and it is about the art of living into ultimate reality, and it's almost always exploration. It's almost always learning and openness. The divine, God, the universe, whatever name we ascribe to the oneness, the holy of holies is always revealing themselves, itself.
So if you have, I choose to hold any kind of philosophy I have about what it's supposed to look like or what I think happens at the end of life. It's very, very light. I don't have a heavy hand with it. And so that's one way that it's kind of easy in a way, to show up with people who are dying because I'm not that attached to the outcome. I'm curious. They are the teachers.
And so if I have any philosophy, it's a philosophy of what I've learned from others. It's not an intellectual philosophy that I'm trying to defend. So it's a very different stance, I think, than your sort of kind of textbook theology school kind of stance. This is, and this is why I think I use that term applied mysticism, because I'm not coming at this practice with a sense of knowing, I'm coming with a sense of wanting to know.
Wakil
What do you think in that work, or as you're doing that work, well, and hospice work in general, what kind of things are the most challenging looking at the day-to-day work, and you're doing palliative care now at a hospital, so maybe you could reflect a little more about how that's different from when you were working in hospice too.
Ayah
This might be very like practical stuff.
Wakil
Yeah, yeah. Or it could be, I mean, it could be spiritual as well. There, I'm certain, I mean, you've kind of spoken to, I love what you said about just being open and curious and willing to be listening and living in the unknowing, this mysticism. That's the way of dealing or working through those challenges. But yeah, on the practical side, maybe, maybe you could talk a little more about some of the practical challenges.
Ayah
Well, so after the volunteer work that I did with David's house in Ohio, a few years after that is when I started working with hospice and one of the challenges I found with home hospice care, and I did that for 20 years is the fact that it takes a toll on sort of the body of the practitioner because you have to drive to where the person lives.
Annalouiza
Yeah.
Ayah
And there are a lot of challenges with that. Holding your concentration between patients, being alone, maybe is one of the harder challenges, I would say, over time, is that you're, you know, I was driving from place to place to place to place, visiting with people, and I may be tired, I may be sick of being in the car, I may be distracted, and then I'm alone. I don't really have a team or companions that are... that are with me throughout the day.
My day might start not at an office, but just from home and then it ends at home. It may not even include seeing other colleagues in the day. So there can be a little bit of loneliness or isolation, I think, that comes up with home hospice care.
Then the other thing that occurred to me over time is that the volume, the immediacy and connection is challenging in home hospice care because you can only get to so many people in a day. It might be three, it might be four. Can be more than that, but I live in a very big county with lots of rural spaces as well as, it can be an hour between two patients.
Wakil can attest, because he was our driver, bless his heart, when he interned with me.
Wakil
I was gonna say, what I remember about that was that it was special to be in the car together, to have that time together as we were driving. Sometimes, like you said, a whole hour between places. But to have that time together to really reflect on what was happening, what was about to happen or what had just happened and to share your incredible wisdom and compassion. I really enjoyed that. Yeah, I miss it. I'd like to do it again.
Ayah
Yeah. And me too. I mean, so that's why I didn't want to let you go because it really helps to have companionship on the path. And those are, I use those words very specifically because those are very Sufi words actually.
We talk about, Rumi says, keep your companions close. Stick close to those who understand, who support, who carry that light. That's very important. So I eventually over the last couple of years have kind of explored my way into inpatient care, which was one of my dreams really all along.
As we know, many hospice programs started as inpatient centers. Christopher house and the hospice in Connecticut. So most, most of the hospices started as inpatient units and they were collectives.
And I do think there's something that is maintained, supported, nurtured when there's a collective of people with a shared intention, physically close together, working together, both to care for the patients and their families. and also to receive the blessings of that work through that relationship, right? Because end-of-life work is extremely reciprocal. There's very little one-way dynamic except for maybe like skills and function.
In terms of like the spirituality, the emotionality, the humanness of this work, it's happening in both directions.
Annalouiza
That's why it's an honor to walk with people too, right? Like it's an honor to be in those. places because you are both teaching and learning from each other.
Ayah
Yes, absolutely. And like I said, the expertise in hospice, the expertise in end of life can be nurtured through our spiritual practices, but there's no substitution, I don't think, for the direct experience of being with someone who's dying.
Wakil
Yeah. I remember one of the big challenges, and you kind of spoke to this a bit, was the model, trying to mix the corporate model with the compassion of hospice, right? And I think that was always a difficulty. And I also realized that, and what I learned with working with you, was how important it was to keep that compassion, to keep that, to hold that with not just the people we were working with, but with the community of the hospice workers. And that was one of the things that again, you demonstrated so beautifully for me is how you carried the rest of the folks in the office basically, in a beautiful, beautiful way.
Ayah
I think that is very true. There is a business model to the way that end-of-life care is organized now. It's a Medicare benefit. And I don't like to say this, but it's true. It's become somewhat of a business.
There's non-for-profits and profit-based organizations that I think benefit from that business side. I'm not one to, I'll put it this way, I'm not one to think that people that work for the for-profit agencies are somehow less devoted to the work, but it does make the work difficult at times with frequency needs.
In other words, your success can be measured by how many miles you drove, how many people you saw. You know, so there can be pressure on lowering your time in the home so that you can kind of go to the next place or seeing so many people that you don't have time to in-service yourself on new best practices or have continuing education, all of those sorts of things. So the pressures of the business model, you're right, Wakil, was something we talked quite a bit about. It was untenable for me in the end.
And the other piece of it is what I was trying to get to before is that because of this business model, because of the way reimbursement happens, those small inpatient units have more or less gone away.
So... You may notice in your community there aren't a plethora of inpatient units for end-of-life care. And the reason is they're not financially sustainable, quote unquote.
Annalouiza
Wow.
Ayah
There was one in Portland, for example, that the company, the agency closed it after some time. And it was a group of physicians recently that started, I think, a not-for-profit organization and kind of resurrected it so that there would be one in the Portland area.
Otherwise, people are in the if they need intensified end-of-life care, or they can be in a nursing home. There is something called general inpatient level of care, GIP, level of hospice, that can happen in a nursing home.
And I will say a lot of, there are things called adult family homes or adult foster homes, or even assisted livings that do wonderful work at end-of-life. However, they're not dedicated end-of-life spaces with staff that are only doing that. And so the vibration is a little bit different. It's a more community setting.
So you're one person dying while something else is happening next door. So the intention, the vibe is just very different.
And I had always wanted to experience that kind of inpatient, dedicated setting. And that's sort of how I've moved into this new phase of my work.
One of the most inspirational settings for me has been the San Francisco Zen hospice project and you may know of them and I think they've recently actually closed their doors.
Annalouiza
What? I didn't know this.
Ayah
I think so. At least the inpatient home has closed. But I did get a chance to visit it and feel for myself what it means to create an environment where end of life care is prioritized and centralized. It's a beautiful thing.
Wakil
Really? Yeah.
Ayah
What I did in the last couple of years that is now found my way to working in palliative care, which includes all of the hospice patients, you know, hospice like we call it comfort care in the hospital. But and there's also GIP, there's also that hospices will sometimes work in hospitals.
But as the palliative care chaplain, I would still see everybody who's known to be dying in the hospital. And I just love it for the sense that I have quick access to people, you know. really given me a new lease on life.
Annalouiza
Excitement.
Ayah
Yeah, you know, I kind of came back to life that I can see multiple people in a day. I can run back and see someone if their condition changes. I have a team of people that I work with who I can speak to immediately about different issues, get support if I need it, and just be present in the hospital.
So like in the hospital. sometimes it's those sidebar moments that can be very neat people, right? So you meet someone in an elevator, a loved one who's going home to get some something, and you can have these little moments with people. And it's a way of sort of expanding your role from just being like present for like formal visits, to sort of being present in the community of life that's happening around this person and their family who are going through something very challenging. out, if that makes sense?
Wakil
Yeah. Yeah, sweet, sweet.
Ayah
So I love those kind of moments that happen in the hospital.
Wakil
Yeah.
Annalouiza
Grateful they have you.
Ayah
Yeah. To cherish those sweet moments.
Wakil
Yeah. We're getting close to the end of our time. This has been an amazing time to talk to you. I really am so happy that we got to do this. Is there anything that you wish we had asked you?
Ayah
One thing I do want to mention is that maybe to give folks some resources or to share what resources have really helped me kind of formed me as a spiritual caregiver and being invited to talk with you both made me think about my foundational books and recent experiences.
I had a wonderful evening last night just sort of recollecting some of those things.
Annalouiza
Wonderful.
Ayah
And so one of them would be the Zen Hospice Project.
Annalouiza
Yep, I looked it up and you know, it's still here. It just got renamed. Because I think it's now the Zen Caregiving Project. Yeah. Right? And it's still here.
Ayah
It is here, but I think it's less of an actual inpatient unit. And now it's more of, which is a wonderful thing, but it's teaching caregivers skills, spiritual practices around what it means to be a caregiver to someone who is seriously ill or dying.
And so that would be a website. I would absolutely recommend people check out anywhere. It has influenced many, many caregivers, I think, from a variety of different traditions. There are teachers, you know, like Joan Halifax and Frank Ostrouski, who's, I think, the founder of the Zen Hospice Project, and many, many others that I think you could kind of link to through that.
The other one I would, if someone would ask me to choose one book that was my centerpiece of information and knowledge, it would be Kathleen Dowling Singh's book, The Grace in Dying, and I bought the Kindle last night and started to look at it.
It's absolutely a marvelous end of life book because what she does is creates a whole cartography of all the different sort of stages of the mystical journey and overlays them with the stages of dying and how they may be invitations to overlap one another.
Can I end with a poem?
Annalouiza
Yes.
Wakil
Yeah, actually, we usually do. So I will just say one more thing real quickly that we will link to any of those things that you've mentioned. And if you have other resources, you'd like us to put in the links for the program notes, please send those ahead. Yeah, we always like to end with a poem. And so we would, we would, since you've got one, it'd be perfect if you if you did the poem.
Ayah
Okay, so I found this poem last night reviewing The Grace in Dying, and this is mentioned, I think, in the prologue of the book.
It's a poem by the Zen master Hong Chi, and it is thus.
Silently and serenely, one forgets all words.
Clearly and vividly, that appears.
When one realizes it, it is vast and without limits.
In its essence, it is pure awareness,
full of wonder in this pure reflection.
Infinite wonder permeates this serenity.
In this illumination, all intentional efforts vanish.
Silence is the final word.
Reflection is the response to all manifestation.
Devoid of any effort this response is natural and spontaneous.
The truth of silent illumination
is perfect and complete.
So this would be a poem I would leave as a meditation on contemplating death.
Annalouiza
Thank you so much.
Wakil
Yeah, send that to me so that I can put that in our notes as well. That was very beautiful. Very beautiful. Thank you. Can you read just the last two lines again?
Ayah
Oh, sure.
The truth of silent illumination
is perfect and complete.
Wakil
Yeah, may it be so.
Annalouiza
Thank you so much for sharing yourself and your journey.
Ayah
You're welcome. It was an absolute pleasure to be invited into this conversation. I really appreciate it. Appreciate you both.
Wakil
Yeah, thank you so much. And to our listeners, we thank you for listening and please subscribe, tell your friends. follow us on social media, consider supporting us through Patreon. All that's in the notes. We want to acknowledge that the music we're using was composed and produced by Charles Hiestand.
Annalouiza
Thank you for all my crew who's supporting me and giving us endeavor. I love these conversations, so I'm grateful that you said yes and that you're here with us. And I appreciate all the listeners and I want questions and I want stories.
Wakil
Yeah, so please send your stories and your ideas and your questions to the endoflifeconvo. That's all one word at gmail.com and we' may call you up and say, come and do an interview with us.
Annalouiza
That's right.
Wakil
And we just want to also let you know that our next episode's guest will be Bodie B, probably the only owner of a nonprofit funeral home in the country. We're looking forward to that. See you all next time!
Annalouiza
Adios!