Transcription of Ron Hoffman for the show ALS #137
Dr. Lisa: ALS is a disease that I think as a healthcare provider I struggle with and I know most of my fellow healthcare providers also struggle with, because it’s something that we have yet to cure and aren’t even necessarily completely certain how to deal with it on a day-to-day basis.
Today, we have with us Ron Hoffman of Compassionate Care ALS. Ron is an individual who does deal with this on a day-to-day basis. Ron Hoffman founded Compassionate Care ALS and has served as executive director for the past 10 years. He helped support people living with ALS by coordinating needs evaluations and instructing on ALS disease progression and end-of-life care. He facilitates and guides intimate discussions with ALS patients and their families who are nearing death or actively dying. Ron is also the author of Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill and is in the process of building an education and retreat center.
Ron, thanks so much for coming in.
Ron: Thank you for having me.
Dr. Lisa: We’re very fortunate to have you because I know that you go all over the country with the work that you do and you actually live in Massachusetts.
Ron: Yeah. I’ve been in Falmouth since 1997 on a full-time basis. I do.
Dr. Lisa: We came to know you … I know you’ve done work with families in Maine, but we came to know you through Jill Hoy and Jon Imber and in article that we have been writing about them and Jon Imber struggled with ALS for Maine Magazine. When I went to visit them in their Massachusetts winter home, they handed me a company of Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill. The person I was with, Kevin Thomas, who publishes Maine Magazine, he said, “Why is there a bullet? What’s the relationship between the bullet and what Ron Hoffman does?” I’ve read your book so I know the answer, but why you … tell our listeners.
Ron: One way of describing the bullet will be oftentimes metaphorically speaking. In the world of ALS or any fatal or terminal illness, I think sometimes people are looking for that silver bullet and for me one piece about Sacred Bullet is just that it is a sacred bullet. Obviously, there’s a part of story and I’m not going to share a whole lot of it with you, but as a child I had an unfortunate experience with the shooting, which pretty much permeated my life until I was willing to really take a look at it. This is something I live with my whole life.
Part of the book, obviously, was about that. The book is a memoir. It’s about my life. It’s about the work that I do. The book is in four sections. The first one is called showing up. In my experience and the things I’ve learned in the last 10, 11 years and I have been doing this work since 1997 when I was a carrier for Gordon, but what I’ve learned is the importance of showing up.
Then, of course, the book takes you from there to doing one’s mending or what we will call mending, which is about my own inner work, my own tending to myself, if you will, and then it goes into the next chapter called tending and then, of course, overcoming so showing up, mending, tending, overcoming. In my experience in all of the years, I look at our healthcare system and I look at our physicians. There are some incredible physicians and there are some wonderful components of our healthcare system.
In my experience, the institutionalization of our healthcare gets in the way of our healthcare. From perspective, they can certainly put lots of money into it. From where I sit and what I view is our system isn’t going to change. Healthcare is not going to change unless we’re willing to bring the right type of support for the people who are in healthcare, the people doing the work. I sat for three or four years on the Palliative Care and Hospice Federation Board in Massachusetts so I got to learn a lot huge proponents, huge fan of the world of hospice, the world of VNA.
A question that I often asked individuals and I love speaking with nursing students and medical students, I’m really passionate about that because that’s where thing will change. The question I asked them, the question that I asked neurologists, the question I put out there is, are you willing to do the work necessary on yourself in order to better tend to the people that you’re serving? Sometimes people look at me like I have horns. They’re not quite getting it. Just put in other way, are you willing to do your own inquiry? Are you willing to address your own healing work?
I firmly have a hunch that we all have trauma that resides in our own bodies. It doesn’t have to be to the extent of the traumas that I experienced as a child and other parts of my life and get hit in the head with a hammer and have trauma in your body unless we’re willing to pay attention to it, work with people in order to release it, so bringing that forth to healthcare. If you’re not willing to do the work necessary on yourself truly, how can you show up for people in catastrophic circumstances?
That’s what my work is about, showing up, being present and listening, bearing witness to those, not only willing to do the work on ourselves but are we willing to go out there after we get our degrees, which is don’t have from school and continue that work, continue that education because there’s extraordinary people in the world, extraordinary programs in the world that are available.
One other piece is organizations, from my perspective, are only as innovative as its leadership allows them to be. For me, it’s … I’ve gotten in trouble in before because along the way there are people in healthcare didn’t quite understand what I was doing, who is this guy out there or who does he think he is. Some of my families would go in and share with them, “Ron Hoffman says.” Who is this guy?
Again, there’s extraordinary physicians and doctors in the world and there are some wonderful components of healthcare but unless we’re really, really serious bringing education intending to the people who were doing the work, especially in the world of hospice because in the world of hospice … My book is also about a great deal about end of life. I’ve seen too many times all hospices were not created equal. For me, it’s who’s walking in the door and what are they bringing with them.
Dr. Lisa: Tell me about Compassionate Care ALS. What does this organization do?
Ron: What I don’t do and this is relevant to what I was just saying before. What I don’t do is walk in and tell the family or individuals everything they don’t want to know and it happens far too frequently from healthcare. What I don’t do is go in and tell in people everything I think they should know. I’ve learned to leave my baggage at the door so the things I don’t do or the things that we do do. I think what that allows to happen is somebody who’s walking in the door who is just authentic and he’s not here to give me advice and to tell me what to do.
What we do do is bring physical, emotional and spiritual care to the table, which can look very different from one family to the next what we’ve created over the years. I will give credit to a chaplain named John Sharon, who worked for me some time ago. He said, “Ron, what you’ve created here is a relational model and it’s beautiful.” “Okay. Yes, that’s exactly what’s been created.” Everyone is uniquely different and until healthcare learns that, there can be difficulties.
When I was taking care of Gordon back in ’97 and ’98, what we learned together and what I learned is there was an incredible lack of support for individuals living with ALS. I even at that time didn’t know what all that look like or what it meant. I just knew something needed to be different. As I honed my skills, because in the beginning I really didn’t know what I was doing, the seeds have been planted and I knew there needed be a different way or there’s just some lacking.
I learned as I went and I learned that there was equipment out there that it makes sense for us to buy, because insurance certainly wouldn’t cover it. Insurance coverage are basics. If we can contribute some of what we bring and put into equipment just high end uniquely different, things will bring quality and dignity in the people’s lives.
Dr. Lisa: Some of these things are may be thing like lifts that unable people will get.
Ron: Lift as a lift is not a lift. It’s not a traditional Hoyer lift. That’s what our system gives their manual and oftentimes in the world avail us the person doing the tending to, the caregiver is incredibly exhausted. Here you have this manual lift from our healthcare system that, one, it’s very generic. It takes a lot of work and it takes a lot of effort. That said, some people make it happened and it works.
Dr. Lisa: This is something that lifts an individual from the bed to chair.
Ron: From the bed to the chair, from the chair to the bed. It allows someone rather than to physically lift someone with a bear hug or under their arms, it’s an assist. Rather than bringing the traditional lift, over the years I found some really high-end pieces, some high-end lifts if you will. We have what we call a medicine bag, which just has a lot some really nice little items in there that make for really wonderful assists and, again, bringing dignity to people’s lives.
Oftentimes, people don’t know where the stuff comes from. They don’t even know it exists. One of the downsides to the upside is over the years my friends in the world of hospice he get all these calls, “Do you have this? Do you have this? Do you have this?” Let’s take a deep breath and say, “Wow, okay. We’ll do our best.” All of these items that are out there but rather than people having to pay for it, we’ve learned along the way. We can assist them in that, not always but it can look different ways for different families. It’s really dependent upon people’s circumstances.
Dr. Lisa: You’ve mentioned Gordon’s name and Gordon was I believe the first person that you cared for who had ALS.
Ron: Right.
Dr. Lisa: It was his wife Betsy that you approached when you said, “I think we can do something bigger here.”
Ron: What happened was about a month before Gordon passed, I sat down with him and Betsy came in on the conversation with the idea of why don’t we do a fund in your name because just along the way, we saw how difficult it was for other families. They said, “Yeah,” and so away. I said, “Do you want to support research or do you want to help families?”
They talked about it and then Gordon can speak so we talk without his words. Finally, they say, “Let’s help families,” which I was grateful for because had they said research I wouldn’t be here.
Dr. Lisa: The goal of the Dr. Lisa Radio Hour is to help make connections between the health of the individual and the health of the community. The goal of Ted Carter Inspired Landscapes is to deepen our appreciation for the natural world. Here to speak with us today is Ted Carter.
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Dr. Lisa: You’ve also been doing your own work and I know that you’ve worked with Roshi Joan Halifax and you’ve worked with actually quite a large community across the country of people who are really interested in the personal narrative and how their own need for healing impacts how they deal with the world. I’d like to read this. This is from your book from the mythologist and storyteller Michael Meade.
“When you step further into the story [you can 00:45:05] to live, not only does the mythic territory open but the deep self moves and world of imagination and meaning comes toward you. When we’re oriented to the core imaginations you did in our souls, we can find meaning again. Even our worse experiences can become revelatory and healing rather than traumatizing and alienating.”
This really it’s very central to what you do. Its helping people move towards to that core of themselves.
Ron: I couldn’t do that if I hadn’t done my own work, what I’ve learned about myself and I still have a lot of work to do. I don’t think we ever healed. There’s always more to be done, more to be paid attention to, more tending of ourselves to be done. If I have an awareness of what’s going on in my own body, if I can really truly pay attention to what I’m feeling at any moment, not just when I’m not with my families but when I’m with my families, then I’m able to know when something is missed.
If I’m paying attention and I have that in that moment of knowing I just said something I shouldn’t have said, my body is going to tell me that, opposed to as I was early speaking with someone about. I think with Jon and Jill in my experience that’s the ultimate relationship for me, that’s the ultimate example of a relational model.
The first time I met Jon, we just dropped into this extraordinary place where all the masks and all the layers for the most part were enough where things were just peeled away. It was an incredible, authentic sharing of words and sharing of silence and just an eye-to-eye contact we just dropped into this extraordinary place. Since that time, an incredibly, beautiful relationship has unfolded with Jon, Jill, their son Gabe, and myself.
I think in some level that’s what Michael Meade is speaking to, but we have to be willing to pay attention to ourselves. We have to be willing to setting out fire and feel whatever it is we need to feel attend to, attend to ourselves, attend to the shadow, attend to the darkness, attend to the uncertainties and it doesn’t mean I mastered that far from it. I continually learn to ask for that assistance, to ask for that help if I can remember to do that more often whether it’s asking God for help or my ancestors for help.
I know when I can do that I’m not walking alone and oftentimes I’ll think of my other families when I’m walking in to see another family. I’m walking side by side with people in order to truly show up and to continue to do. In fact, I was speaking with someone earlier in your office and I was reminded I often get questioned, “How do you keep doing what you’re doing?” Not long ago, I was like, “I ask for that assistance be it from God and my ancestors.” The ancestral piece is really big for me.
Also the connection I have, the relationships I sometimes have with some of my families like Jon, like Jill, it’s like a mutual sharing and in that sharing there’s a feeding. There’s a nurturing going on. It’s giving and it’s receiving in a very beautiful, appropriate place. Just out in your office, I realized that’s how I keep doing what I’m doing because it can’t get incredibly hard.
Families are very, very different. Some have a little need and some have many needs. It’s not so much whether it’s little or small, it’s about the unfolding in that relationship and that unveiling of what’s coming forth from that.
Dr. Lisa: It is one of the more difficult things to do, remaining present, being fully present with another human being and whether you’re doing it as a doctor, as I am or whether you’re doing it as a care provider as you have been. Why is it so difficult to get into that space with someone who even if they’re not going through something significant like ALS?
Ron: I think in the world of our healthcare … I was visiting a friend of mine, an elder. Her name is Janet and she’s 83 I think. She’s in the hospital. This is yesterday and she’s a dear friend. Her son has been living with ALS for a long, long time and quite frankly in a pretty good place. I found out she was in the hospital so I went to go see her and it was one of the large hospitals in Boston. I got there and it was just huge. I hadn’t been in this hospital.
Corridor after corridor I got up to her room and her daughter was speaking to one of the doctors I think. I was just watching people come and go, come and go, come and go. I was thinking of the doctor. I was thinking of the nurse who is paying attention to them. They’re so I would say overworked. I saw this doctor really listening to the daughter. I was really touched and it was a beautiful thing to see.
Again, it gets back to the institutionalization of our healthcare system. There’s just not enough heart, there’s not enough time. You have all of your forms to fill out. In my world, I don’t do paper. I really try not to. We have maybe one form and that’s [the same as bow 00:51:27] in a vehicle, because I remember what that was like for Gordon in clinic one day and this is in ’97, ’98. How many times are you all going to ask this man the same questions one after the next, after the next? I knew there could be a different way.
I understand it needs to be done, but it gets back to are we willing to attend to ourselves, are we willing to do the work necessary on ourselves, and will the system allow the institutions to do that to support the individuals. My hunch is if you’re a doctor that really shows up for her people, I don’t like to hear patients. That’s what I know about you and I see that with others. Oftentimes those that don’t and it’s not that they don’t wish to or don’t want to, I’m not sure they know how to.
I know Roshi Joan Halifax, who I met long ago, does some incredible programs that you probably want in particular being with dying. You can’t get in it now because it’s filled with doctors and nurse practitioners. She’s had too over the years because they’re calling for it now. When they leave there, there’s another whole sense of what it means to be present, what it means to show up and there’s a lot of that work going on. Until we really come to a place that we understand that, it’s hard.
Another question that I asked, because I hear this from my families once often when they receive a diagnosis and certainly not all the time. Oftentimes we see ALS diagnosis and I would certainly assume other fatal diagnoses. It’s not an easy thing certainly to hear, but I know that it’s not an easy thing for a physician to give and I hear that from families.
Oftentimes I asked and yet I have some families their doctors are hugely important and they put them on this pedestal and it’s like, “Go for it. I hear you.” I honor that. A question I’ll sometimes ask another question is truly what qualifies a physician to talk end of life and that should they teach in schools. It gets back to the same thing. Unless a doctor or physician is willing to do their own inner work, review their own terrain about what it means to die, how can we truly have that conversation? It’s just a question and it’s a way to inquire.
In my perfect world, everyone in healthcare we go to the desert for two or three weeks and that’s what we support. I support that work for healthcare professionals. I support that work for our families to bring in the resources that I know we’re in the world. They can really have a profound influence and sharing a really beautiful way. Other ways of living in this world that I really believe we know that’s engrained in us.
It’s just culturally we’re not used to killing the [layers away 00:55:07] or are we willing to crack open a little bit, open up our heart where we can wallow on the floor for a little bit and cry with no one having to pick us up, but for someone to be there to support us.
Dr. Lisa: Ron, I know this is just the beginning of ongoing conversation on this subject and one that I hope that people will find thought-provoking. I hope the people who are listening will spend some time thinking about not just ALS but their own experience with end-of-life issues and their own need for mending and tending.
How can people reach you? What is the website for Compassionate Care ALS?
Ron: Our website is ccals.org; C as in compassion, C as in care, ALS dot org. That’s our website.
Dr. Lisa: You’re going to this process of your early on the process of building this education and retreat center and I imagine you’ll keep people updated through the website?
Ron: Yes. It is a reality. It has become a reality. This has been a dream of mine for many, many, many years and many, many years ago it was a reality but I locked away from it for many reasons. It’s come back several times over the years and now it came back to us again and so we’re doing it. We’ll keep you posted on that for sure. You can go to the website the next coming weeks and there’ll be some information on there that’s happening.
Dr. Lisa: People can also find your book, Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill, I imagine through …
Ron: Same website, ccals, and the website should be up shortly sacredbullet.com.
Dr. Lisa: I feel like after leaving this conversation I just need to go sit somewhere and think because there’s a lot of things that just bubble up and there are a lot of things that we didn’t even have a chance to talk about in the book. I do encourage people to visit your website to read the book, to learn more about what you’re doing. I appreciate all of the things that you’re offering to people around, really around the country but also in the state of Maine, patients and families with ALS and others.
We’ve been speaking with Ron Hoffman of Compassionate Care ALS and author of Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill. Thank you so much, Ron.
Ron: Thank you for having me.
Dr. Lisa: You’ve been listening to the Dr. Lisa Radio Hour and Podcast, show number 137, ALS. Our guests have included Kate Gawler, Roy Bouchard, and Ron Hoffman. For more information on our guests and extended interviews, visit D-O-C-T-O-R Lisa dot org. The Dr. Lisa Radio Hour and Podcast is downloadable for free on iTunes.
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