Transcription of ALS #137
Dr. Lisa: This is Dr. Lisa Belisle and you are listening to the Dr. Lisa Radio Hour and Podcast show #137, ALS, airing for the first time on Sunday, April 27th 2014. Today’s guests include Kate Gawler, Roy Bouchard, and Ron Hoffman.
Amyotrophic lateral sclerosis is a disease of the nervous system that causes problems with muscle control and function, also called Lou Gehrig’s disease. It is considered a rare disease by national standards but is nonetheless thought impact 30,000 Americans at any given time. It is invariably fatal.
In the May issue of Maine Magazine, I wrote about artist Jon Imber and the challenges he has faced as a result of his ALS diagnosis. Today, we speak with Kate Gawler and Roy Bouchard, family members of Sue Gawler, the individual with ALS, and with Ron Hoffman of Compassionate Care ALS.
We hope our conversation gives you insight into what it means to be impacted by this disease and how we might use this lens when thinking about wellness in our own lives. Thank you for joining us.
I had the good fortune to spend time with Jill Hoy and Jon Imber in their home in Massachusetts and observe what Jon was going through in his relatively recent diagnosis of ALS. Today, I am with Kate Gawler and Roy Bouchard who have been dealing with ALS in the family since 2010. Kate Gawler is the sister and Roy Bouchard is the husband of Sue Gawler. Sue has been living with ALS herself since 2010.
Kate is a nurse working in women’s health at Maine Family Planning in Augusta. She and her husband Stew have three grown daughters. Roy is a lake biologist, now retired from the Department of Environmental Protection and is Sue’s main caregiver. He spent decades working all over Maine, monitoring and improving water quality. He and Sue have a son and a daughter in their early 20s. The two families have lived next door to one another for more than 30 years.
Thanks so much for coming in and talking to me today.
Kate: Thanks, Dr. Lisa.
Dr. Lisa: I know it was an effort for you to come in because taking care of Sue and working with Sue it’s a very collaborative process in your family.
Kate: It is. It largely and Roy is by far the main caregiver, but to come here today a lot of pieces had to be put together by Roy.
Roy: I think one of the things that you rapidly learn is that the value of friends and family is paramount. In speaking with ALS patients that don’t have that kind of support network in the community or in their family realize how fortunate you are because they are truly dire straits dealing with it sometimes. I have a lot of supports.
Dr. Lisa: It helps also to have a family that was close before the diagnosis took place, which sounds like you must have been if you live next door to each other for this amount of time.
Kate: Yes and brother lives next door to me so there are three families all in one place spread out over top of a hill. We’ve all made our homes there, raised our kids there. The kids all grew up together and so they’re closest cousins. Before Sue’s diagnosis, it might have been weeks between seeing each other but if anything happened and any of us needed anything, we would just pick up the phone and the rest of us would be right there, so we are really [tight bunch 00:05:40].
Roy: A testament to that is the fact that her three grown daughters come back all the time, brother John’s daughters come back all the time and our kids are usually in and out. We see the rest of the extended family and cousins and everything else on a regular basis, which is really important, too.
Dr. Lisa: Kate, your daughter Emily works here as the assistant publisher of Maine Magazine, Maine Home Design. When she heard that we were doing an ALS show, she said, “You really should talk to my family because my Aunt Sue has had this for several years.” It’s been an interesting experience from what I hear, because ALS is not a disease that we have a cure for yet.
Kate: No and I’m not sure I would use the term interesting in the sense of something that you would want to find out more about. I wish nobody had to learn anything about this disease. Not only do we not have a cure but they don’t even really know, understand what the mechanisms are for this disease.
Indeed, it may be a constellation of diseases. It may not be just one disease. It’s a neurodegenerative disease that’s progressive and they’ve found the genetic component, but that only affects about 5% of people with ALS. The research is active but they’re so far to go in the understanding. We really don’t understand what this disease mechanism is yet.
Roy: There’s a lot of effort in trying to find biological markers in blood serum or proteins or whatever, or common environmental cues that might trigger the expression of disease. As Kate said, if it truly is a constellation of diseases or causes that end up at more or less the same endpoint, then we’re really dealing with a multiply-driven situation where the disease or the research is much more difficult. There’s a lot of emphasis on epidemiology looking at the population, the distribution, common factors that relate to the onset of disease and only now that they’re starting to statistically tease out some possible things like geographic location that might contribute to some cases.
We’re really early in that kind of investigation and the understanding of physiology which is key to developing any kind of treatments let alone a cure is hardly in its infancy yet so it’s a long ways to go unlike many other degenerative diseases where there’s really some understanding of the basic mechanism. It’s pretty opaque right now.
Dr. Lisa: It’s thought of as a rare disease, but I don’t really think it is. I think at any one time there may be a fewer number of people with ALS than with other neurodegenerative diseases like Parkinson’s, but that’s largely because people with ALS don’t have a very long life expectancy. In talking with people, I know an awful lot of people who know somebody in their life who has been affected by this disease. The ramifications of family member with this disease are so enormous and I have never even been able to really imagine what Sue is actually going through. It’s profound.
Roy: The expression of this is you have not just the person with the disease that’s affected. Anyone who has a serious ongoing disease, there’s a ripple effect. It spreads first to the families and then it spreads to the community and then to the economics and ALS is particularly this way. Again, the short duration of the disease, the average life expectancy is three to five years and that’s an average.
The point is that the person’s influence in the community is reflected by their response to that person no longer being around to do what he or she did. You start to see the value of people in the community as persons, the interconnectedness and the ties and the friendships. The huge cost to society of a disease like this it can’t be ameliorated. People not only lose opportunities for themselves but the community is impoverished by this.
It’s a huge drain and you don’t really appreciate it until you have to live with it in the family, for example. Our community has come forth with a lot of love and kindness and response to her, missing her everyday presence, the volunteer work that she did and the like. I think the thing … I’m rambling on, but the thing that really we’ve all missed the most is her voice. We can’t hear her on a daily basis and she can’t express herself and sing like she used to. It’s a very quiet household now.
Dr. Lisa: Here on the Dr. Lisa Radio Hour and Podcast, we’ve long recognized the link between health and wealth. Here to speak more on the topic is Tom Shepard of Shepard Financial.
Tom: Sometimes I meet with married or partnered clients and when we get to talking about their financial lives, a cultural divide bubbles to the surface. One person feels one way about their money and the other seems to be on their own financial island where the set of beliefs and rules that have created unnecessary borders and boundaries. It’s not an uncommon thing. When I hit those situations, I do my best to help both people understand that neither it’s 100% right or wrong that they simply have to take a step back and look at their own financial life and a new light.
It is also true in politics and economics what we need to do is see money as a living thing that can be used to grow our lives together without disagreement or so-called border issues. It’s a great feeling for me. It’s like I’m helping people negotiate peace treaties with their money.
Be in touch if you want to know more Tom at Shepard Financial Maine. We’ll help you evolve with your money.
Male: Security is offered through LPL Financial. Member FINRA/SIPC. Investment advice is offered through Flagship Harbor Advisors, a registered investment advisor. Flagship Harbor Advisors and Shepard Financial are separate entities from LPL Financial.
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Dr. Lisa: This person that you’re describing still is with you.
Kate: Absolutely.
Roy: 100% she’s still with us.
Dr. Lisa: She’s just with you on a different way.
Kate: She cannot move her muscles but she is totally there. That’s one of the most compelling things about this condition, is that although it eventually leads to paralysis the mind is not affected and is exactly as sharp and acute as ever. In Sue’s case that is means of the high order and sense of humor is intact and Roy was saying how she can take a ribbing but she could also give it back and so her mind is very entirely sharp and unchanged. The personality is unchanged.
Roy: The personality is unchanged. The outward manifestations are really not … and that teaches other things about value of outward manifestations and actions and things that what we normally take is the outer shell that’s really not what’s going on. The inner shell or the nuance and the glint in the eyes and things like that make a difference.
What she has done with this, as Kate has alluded to, is quite amazing. I have seen other people with other diseases that have given up and she decided that literally, “I’m not going to give up. I know I can’t be cured. I know this thing is going to kill me eventually.”
She’s a statistician among other things, not just the bell curve but this is few distributions as people on the low end of the life expectancy, high end of the life expectancy. She says, “I’m going to do whatever I need to, to keep a high quality of life and be on the outer into the bell curve. I’m going to beat the odds for a while but I know it’s going to get me.”
That’s the same attitude of persistence and planning, thinking ahead and always trying not to be a burden on other people and has kept her going. She’s extensive of adventure. Just the last two weekends, we went up to Sugarloaf and she slid in the Maine Adaptive Ski Program.
Dr. Lisa: What ski?
Roy: She went skiing. They put her in the sit-sled, especially designed. They put her in a leash. [Ever thought 00:16:04] see Susan on the leash and skid her down the mountain at Sugarloaf. There are amazing volunteers, wonderful people, but they just love to hover there because she got down the end freezing cold just spray all over her face and just frost and she was just grinning.
Kate: Grinning from ear to ear, yeah.
Dr. Lisa: When I was writing the story about Jill Hoy and Jon Imber and I spent time with Jon and with their family and he’s an artist from Maine and this is in an upcoming issue of Maine Magazine. I also spoke with the wife of Dr. Bruce Churchill …
Roy: Who?
Kate: Cindy?
Dr. Lisa: Cindy. He was one of my teachers. He passed away of ALS. It was a really different thing for me to do and I’ve been a writer a long time. I’ve been doctor quite a while. It was really difficult because it’s this place of groundlessness. There are no answers. As a doctor, there’s nothing I can do. It just brought up all these feelings for me.
I imagined that if you have this network of people in the community who are coming in to help with Sue, I imagined that you and Sue have had to deal with other people and their own stuff around ALS. How is that then for you?
Kate: I think that because of who Sue is it’s been a journey that everybody is willing to go on. It does have an element of not surrender but you do have to let go of … Roy and I both [cited this 00:18:01] to Sue, of course, so trying to understand it when there really isn’t. You can only understand a little tiny piece of it that can be frustrating and, of course, the initial impulse is the one actually do something when there isn’t really anything you can do, but people have just hung in there.
Roy: It’s interesting because people initially will have a difficult time dealing with someone in a situation like this. They’re very hesitant because it’s almost like you think of yourself in the community and seeing up persons visually impaired in the street. You don’t know how to help them across the street. You don’t know if they’re sensitive to being helped and the like and what’s the proper way to do it because you don’t deal with folks every day like that.
When someone has got a serious illness, folks have a hesitancy. They’re worried about making a mistake when they care for them. They’re worried about saying the wrong thing and bringing up images that will make them feel depressed or whatever. That’s the brilliance of many of the people I’ve seen with ALS when I’ve had the chance to run into them, say in conferences and like that.
They’re the people who haven’t given up. They’re the people who are still engaged and they exude this way of making you feel comfortable with them that they’ve accepted their lot to some extent and their businesses to have something resembling a good time when they can and sees opportunities.
It gives you a sense of perspective I your own life when your much more petty problems are seemingly knock on you door every day and say, “This is nothing. I can work through this in five minutes rather than taking five days [to maul or rip 00:19:48],” because they saw problems all the time, just trying to figure out how to keep your head from flopping over. It’s a big deal.
Kate: I used to love to complain, but boy all the joy has gone out of complaining for me. I really can’t do it anymore.
Dr. Lisa: I’m glad.
Roy: I’m glad you can’t do it.
Kate: I still do it but it doesn’t take me long to get a reality check and remind myself of what my perspective is.
Roy: It takes a lot of inner strength for people in a situation like that. It doesn’t matter if you got other disease like Parkinson’s or ALS or whatever. It takes a lot of inner strength to keep hold of a joy in life.
We were joking in Sugarloaf when the skier that was going to guide her down the mountain says, “Conditions are really icy today so I hope you avoid any trees.” I look at her and I said, “What are you going to say?” She says, “When we take the bark out of my teeth, I’ll be able to identify which tree it was that you hit.” There you have it.
Dr. Lisa: Every day she is looking for something to find to enjoy?
Roy: One of the things with ALS it’s important to recognize is that because there’s no cure, there’s no real treatment, a lot of energy goes into palliative work just trying to keep people together, keep them comfortable, keep their mental energy up and in the case of folks with a lot of support network, try to get the basics, just the basics there so you can have a wheelchair you needed. You have the caregivers you need and so a lot of energy goes into that.
Right now that’s where the ALS community is focused. They do focus with the national community working a lot on advocacy and research. The local community is really focused on quality of life issues for the family and friend for the people with ALS, their pals, or patients with ALS. They are not just subjects.
Dr. Lisa: I believe there’s an ALS Walk that takes place every year?
Roy: Right. In Portland, it’s September the 6th and in Bangor I think it’s the 23rd of August and both are really successful. I don’t know much about the one in Bangor. A friend of ours who was organizing her team up there just passed away from a different disease, but I know it’s very active. We have relatives that have actually walked in it, but the one down here is a big deal, overrun Marginal …
Kate: Back Bay.
Roy: … Back Bay, yeah.
Kate: Sue’s team was called the Subaru Group Kicks ALS. We were the top fundraising team for two years. We got eked out last year but Sue is the top individual fundraiser for three years in a row. She didn’t know. She has a natural competitive streak so it’s a good fit.
Roy: Yeah, tell me about it. What it does is it draws the larger community like the Chamberlains or the Churchills rather, excuse me. The Churchill family it’s huge. They got a huge following. They raise a lot of money, people show up, and they reaffirm each other’s friendship and kinship. It’s a big deal and so that’s extended network that’s managed to draw in a lot of funding for … a lot of it some goes to research, a lot of it to things like getting wheelchairs for people that don’t have medical support, things like that. Just getting counseling and having people around that can connect to what you need.
These walks are really big and they’re good occasion. We have like over 600 people, right?
Kate: Yeah. You feel like you’re actually doing something. You are doing something. You’re showing up, you’re walking so you’re actually physically doing something and it helps stave off that feeling of helplessness.
Roy: 90% of life is showing up.
Kate: That’s right.
Roy: It’s a good way to do it. It really is.
Dr. Lisa: How can people find out more about the ALS Walk and about Sue’s team/
Roy: If one just simply searches for ALS Walk Maine, they’ll get right to a link that takes them to the Maine Portland Walk and also the Maine New England Chapter for the ALS societies has got a really nice website. It’s got a lot of information, links to as deeply as you want to go into the current research and the thinking about how this works, so it’s a good place to start.
Kate: I think the national website is alsa.org and then our section is ALSA Northern New England. It’s a great organization. Sue and Roy had the opportunity to go to DC a few years ago sponsored by this organization and do some efficacy down there. We would love people to go and check out our team or start your own team or beat all the different teams and pick one you like. It’s a really good effort.
Dr. Lisa: I appreciate you both coming in and talking to us today and I appreciate Sue being with us. I think she is here. This is a tough disease and I give you a lot of credit for I guess doing what you just have to do you just have to do it. I hope the people who are listening who might have a family member who has ALS or someone in their lives that has ALS, I hope people will take the time to look more into these organizations you’re talking about, maybe get involve in the ALS Walk and just be present. Show up as you’ve described it and I think that’s a very valuable thing.
We’ve been speaking with Kate Gawler and with Roy Bouchard and indirectly through both of them with Sue Gawler. Thank you for coming in today.
Roy: You’re welcome. We appreciate it.
Kate: Yeah.
Dr. Lisa: As a physician and small business owner, I rely on Marci Booth from Booth Maine to help me with my own business and to help me live my own life fully. Here are a few thoughts from Marci.
Marci: I feel very fortunate to be a business owner in Maine. Unlike any other place I can think of, Maine is truly a community of connected people in businesses who really want to see each other succeed. If my company can play even the smallest part in creating success for my clients, I am very grateful. That’s what gets us excited at Booth, helping people see their vision become a reality.
I’m Marci Booth. Let’s talk about the changes you need, boothmaine.com.
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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.
Ted: From time to time, I get calls from people I know or former clients and they let me on what’s going on around them. One lady called recently about a letter written in 1956 to Kenneth Roberts and talked about a woman who wanted some dowsing done. Kenneth Roberts did a lot of work with Henry Gross and she knew that I did dowsing. She remembers when I went out to dowse her property this woman that called me. She said the end of the dowsing rod flew off at the time I was doing the dowsing work.
A lot of times I do work on land and detects subtle energies and a lot of times things show up on the land in vortices and things of that nature that really speak to the properties of that land through the subtle energies. It’s amazing how intuitive we are in nature and how nature speaks to us in very subtle ways. Ashes on properties are easily detected. Pets and people ashes I’ve time and time again detected where people are buried.
For instance, some people are always amazed saying, “Oh that’s the place where my husband was buried.” I said, “We should honor this place,” and she said, “I did. I planted this tree here.” I said, “We can have another little ceremony or something.” It’s always important to realize that there’s much more there’s going beyond the scenes and behind the scenes that we can’t see on your landscape in your land.
I’m Ted Carter and if you’d like to contact me, I can be reached at tedcarterdesign.com.
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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.org, 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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This is Dr. Lisa Belisle. I hope you have enjoyed our ALS show. Thank you for allowing me to be a part of your day. May you have a bountiful life.
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