With No Cure For ALS She Chose To HEAL

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I'm very excited to introduce this episode to you.

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I'm going to talk to you today I'm going to talk with Terry Dillion. Terry and I have been friends on Facebook for quite a while. And I knew that she had a serious illness. I knew it was some sort of a neurological disease. But I didn't know exactly what it was. And I didn't realize it was ALS. And I asked her be to be on my podcast, because I've been so impressed by her Wit and Wisdom, over the years that I've known her. And I only learned she had als when learned she was writing her memoir, and I'm going to talk about that. So we're going to talk about today is her memoir. And she's asking for input on the on the cover the title for her book, and for the cover. So Terry was actually in her mid 30s. And she was recently married when she was diagnosed with ALS. If you don't know what ALS is, is a my atrophic lateral sclerosis. And it's maybe the number one disease that we all dread. It's otherwise known as Lou Gehrig's disease. And many people heard of it during the ALS challenge a few years ago. It's a disease that eventually leaves you paralyzed, and Terry is paralyzed now. So the way that we did his interview was really crazy use of technology, Terry actually types with her eyes. So she has a device that can sense her eyes movements, and she types one character at a time by using her eyes. So we did the questions back and forth over the course of a couple of years.

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So the voice you'll hear will be Terry's voice actually computerized. So she makes it an attack, and then the computer reads it for but I just finished reading. I've just finished reading Terry's book. And I have to admit, I shed more than one tear. I'm really impressed by Terry, not just by her whip because she's extremely funny.

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But by also by her grit. She's a tough woman, and the story of how she and her husband john have handled the diagnosis. And the progression of her illness is just truly inspiring. Terry also comes into this with the background of being a Buddhist and a professional therapist. So she's got a really interesting background going into this and to the situation she's gone into. I have to say, this is truly one of the best books I've ever read. And I don't usually overstate things, but this is one of the best books I've ever read. And I'm going to go out in the limit put it up there with Victor Frankel's Man's Search for Meaning. If you've read that book, you know, it's a very deep book, some really great insights, but Terry's book to me is much more accessible, and her story is much more relatable.

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And her wit combined with her wisdom, make this very difficult subject palatable. Her book is titled no pressure, no diamonds, and is by Terry t ri, di LL. io n. Terry delian. It's available on Amazon, I got the Kindle version. And I listened to the book as I was taking my morning walks. I feel so fortunate to have known Terry and have gotten to know her better through the reading every book, and I am humbled and honored that she chose to do this interview with me. I want to make one more comment, and then we'll get into the questions. I love the introduction, the book as much as anything. Terry begins by talking about two illnesses, the first being the illness as she was diagnosed with ALS, the one that's changing her body, but the other illness is the illness of tidy answers. We're going through challenges well meaning people will inundate us with tidy answers, tidy answers.

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They'll tell us to pray more.

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Eat this, don't eat that it's your karma. You must have done something deserve this have more faith. Terry heard it all, and many of us do when we're grieving as well. And I love that the book doesn't try to provide any tiny answers. It's raw, and it's real. So let's get into the questions. The first question I have for you, Terry is this. You mentioned you fancy yourself as somewhat of a master of manifestation. You and john were recently married, we began to experience symptoms and were diagnosed, you were living in extremely healthy lifestyle.

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Yet, at a retreat, you're asked to pick a human archetype that you've been that you'd like to be. And you chose for Stephanie, the Greek goddess who was kidnapped and taken to the underworld, and eventually became the connection between the underworld and the, quote, land of the living. You had a meditation where you started howling, and collapsed to the floor and recognize you were in grief, even though at the time, nothing extensively was wrong.

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This was before your diagnosis.

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Do you think you knew on a soul level? What was coming up for you?

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Brian, I do. On one level, I knew something was very wrong with my body. And I sense that the strength I was losing in my hand was never coming back. I would have these flashes of doom which were somatic in nature. My body knew something my mind did not. And I believe in many ways, the body is the record of the subconscious. But I had no conscious awareness of the threat I was facing, because I had no cognitive map for understanding how my weakening could be happening. And I knew very little about neurodegenerative disease.

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And then I had all these mysterious longings for big change in my life, which I knew made little sense because my life was really working and I was sad. So to speak with my fulfilling career with a happy new marriage with our new house.

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By all outer appearances, I shouldn't have been hungry for life changing adventure. But I believe that's the thing with the soul. It knows what it knows and wants what it wants. And unfortunately, or fortunately, depending on which perspective we're taking, it doesn't always play well with our ego, or with rationality. Actually, I would like to circle back to this later in the conversation, because I believe this tension between destiny and reason is very important to explore, especially for those of us fortunate enough to have the opportunity and language to explore questions of a spiritual nature. Because here I was with this beautiful, functional, privileged life, not yet consciously aware of the deep trouble my body was already in yet fantasizing about becoming an archetype and during an impossible existence between worlds. And now here I am nearly five years later, having been in hospice for nearly 18 months, straddling the land of the living and the dead and giving interviews no less. How could anyone argue I wasn't tapping into a soul destiny or a path of some level before I even knew I was sick. I could talk about this all day.

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Yeah, you know, I found that quite often children who passed away early, and even adults give us a foreshadowing of their impending deaths that we don't recognize until later.

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My daughter was a healthy 15 year old and about six weeks before she passed, she told my other daughter and her cousins how she wanted to be cremated, and her ashes scattered under a tree. I didn't know about this until after she had passed, we were making her funeral arrangements. I've wondered if maybe they know on a soul level, but not on a conscious level.

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When we are left behind here that we plan this the natural first reaction is, there is no way in hell, I would have planned this. So what are your thoughts on the soul or higher self and its desires versus what our egos want? Well, first off, that's a striking story about her daughter. What little I know about her. She sounds like an incredible being with a strong sense of purpose. And,

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you know, I wish I could say I have well developed thoughts on the question of soul. I have a lot of questions.

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And I have some hunches, informed in part by the type of experiences people like those featured on your podcast have had and I haven't told this story to more than a handful of people.

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But soon after I was diagnosed with ALS, I visited a local intuitive who herself discovered her abilities after a serious illness. And she had a different approach than a medical intuitive I wrote about in the book and I was hoping I could find some deeper answers about what was happening for me on a soul level, and how I could alter my fate. And after a few days of meetings and calls, she ended up inviting me to coffee to discuss what she found. And after we sat down, she took a deep breath and said, Terry, this has been the weirdest thing. For the first time in the 15 years, my spirit guide has been communicating with me. He said something I've never heard him say before. He keeps telling me no matter how many times I've asked him that there's literally nothing you can do to change having this disease or to stop its progression. And he keeps insisting sometimes these things just need to happen. And the intuitive was very kind and apologetic and knew how devastating this message was for me. She even refused to accept payment for the time she spent on my behalf and we parted amicably. But I was so disturbed by this. If there was some licensing board for psychics, I probably would have filed a complaint against her, and maybe her spirit guide as well. And it's funny now, but I really was that unhinged at the time, this dot was not the answer I wanted to hear. And I wanted hope. It hammered another nail in the coffin of my trust in the spirit world. And it's taken years of perspective to try to pry those nails back out. As you know, in my book, I play with the idea of Earth being a school of pain.

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And I playfully referenced the idea that as souls hoping to grow, we are willing to endure any sort of hardship because we know pain and adversity provide the necessary friction for us to learn about how to live and love. But of course, once we're embodied in the thick of our legitimate suffering, it's not so fun. No parent would ever want to endure the loss of a child. And no person would ever want to endure the debilitation of a paralyzing disease. And if I'm honest, that's still a work in progress for me to identify what it is I trust about the spirit world and the afterlife and I don't have the answers and my own beliefs are still evolving, but as the acute grief about that My disablement wears down. And I continue to grow and harvest gifts of perspective due to my illness. I'm trusting more and more that beautiful growth can arise from circumstances and losses no one would ever choose.

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So if nothing else, I can admit that though we can't see the big picture from ground level, perhaps our souls or higher selves can and if we learn how to listen, they may just be sending us hints all the time.

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This idea is comforting to me.

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Next question I have for you, Terry, is you were an accomplished Buddhist and psychotherapists, and you even joked about becoming a master of manifestation. So how did this background impact you as you dealt with the diagnosis and the progression of the illness?

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Well, I believe if anyone at my 30 something age was prepared to handle such a prognosis based on their training and prior life experience, I was the type of Buddhism I studied and practiced there ion of Buddhism is really all about sitting in the fire.

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And it's about learning how to ride out and stay present to intense experience, and developing confidence in your inner resources to be able to regard any challenge as a teaching. Along with mindfulness straining, my training as a psycho therapist taught me how to watch my thoughts, not only to observe the content of my thoughts, but additionally to notice how certain thought patterns affected me emotionally. And even though it's possible to be a trained therapist who doesn't practice what you preach about emotional regulation and distress tolerance. My skills of talking myself down from emotional ledges have been intact throughout this disease process, which I'm incredibly grateful for. But my pride in my ability to manifest really ended up being a double edged sword. On one hand, I was inspired by the opportunity to somehow change my fate. And I knew if I managed to reverse a disease that was considered nearly 100% fatal, I'd truly be a manifestation, Rockstar with an incredible story to tell. And yet the flip side of that equation was quite negative and twofold. One, what would it mean about me if I couldn't, in fact, create a better reality when it most mattered, and to what did it mean that I had manifested a paralyzing disease at all in the first place, and it felt so bad and was filled with such shame and self blame, which, of course, is where the law of attraction narratives become so problematic. And that's why it was so important for me in the book to poke holes and the whole idea that we create our own realities. This idea deserves much more nuance than it's usually given in prosperity, gospel and New Age thinking.

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You know, we all have expectations of life. And I noticed you and john were relatively young and newly married, you were younger than john, and I was struck by what a healthy lifestyle you guys were living, it had to be jarring and hard to accept your diagnosis.

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Did you and john ever discuss how unfair this all seemed?

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I'm not sure john and i have explicitly discussed the unfairness in detail. But that idea is implicit in much of our process, and it taps into the kind of universal questions we humans tend to have about why bad things happen to good people. Many of us have strong defenses against contemplating our own vulnerability, we tend to think if we do everything right, we'll be protected from misfortune because God, the universe, or our own good karma will be on our side. And so when we suddenly learn firsthand that reality isn't so simple and transactional, it can send us into cynicism, or spiritual crisis. But I think this is just a process in developing maturity and a more humbled and complex perspective on how life works, we are presented the opportunity to believe we haven't created our reality. But we are empowered to choose how we respond and make sense of it.

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While I totally agree with that, I thought it was interesting when you spoke about your Buddhist training, warning you about the trap of spiritual materialism, the idea that we can reach these, these states of mind that can prevent us from having to suffer, do you think you fell into that trap?

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Anyway,

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Brian, I totally did fall into that trap. And I realized now that I carried a kind of spiritual arrogance about my path, and I thought I was special to be doing the practices I was doing. And to have the philosophical framework I had, I thought it all meant that I was favored by the fates, like I just mentioned. So my new reality was certainly a rude wake up call. And it's worth mentioning this type of arrogance can show up in many different ways. And sometimes we think our intelligence will save us or our incredible drive or our good faith or the cleverness of our prayers, especially if we carry an abundance of social privileges like I have. It's easy to overestimate our abilities to affect outcomes in our own favor. But that works only until the day it suddenly doesn't. And then we're forced to question the narratives We've been living by without realizing it.

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Yeah, Terry, I totally agree with that. We don't know how much control we have over our certain circumstances, in terms of our minds being able to influence the outside world. But we do know that we can control our responses. And I love the way that you put that I love the way you talked about how the message that would have been more helpful to you is that you have influence over your well being.

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But it may not, it may or may not be possible for you to physically recover, but we do have a choice in how we respond to it. So I just wanted to emphasize a point, I think it's a very, very important one. And we don't always know what's best for us. So I've come across the same thing myself some of the worst things I thought in my life, that happened to me turned out to be some of the best things once I got down the road a little bit. So thanks again for that. I next question is, I think the eye the New Age idea of manifestation, the prosperity, gospel, etc. I think they're dangerous doctrines in the wrong hand. This has basically been talking about some of the law of karma. It's easy to believe that we're doing a great job of manifesting while things are going great. But as you pointed out, the flip side of that is ugly. I remember as a kid being totally confused by the book of Job in the Bible.

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The guy Job had everything taken from him and his friends kept looking for simple answers, which job wasn't buying. In the end, God, God basically says, shit happens, or this stuff is so complex, you can't even begin to comprehend it. The idea that we think we know it's best for us, it's completely natural. But I'm beginning to think that our human part is almost taught toddler like our higher self or source, our soul knows what is best for us in the long term.

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And I think like a loving parent sometimes gives us what we don't think we want.

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I believe those of us who have fancied ourselves as spiritual, or even just cutting edge in our alternative beliefs on health and well being need to be extra careful with this because we are especially susceptible to a subtle form of narcissism. And we like to think that we have an advantage over quote, normal people and power over quote, normal misfortune.

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And these kinds of beliefs can be very quiet. And often it's impossible to know how much we carry them until something happens that we never expected and struggle to make sense of.

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And I think this is one reason why we're seeing so many spiritual people falling prey to conspiracy theories about the Coronavirus right now is because in the West and I should also add in the global north, many of us have carried a sense of exceptionalism for a long time and we've gotten away with assuming technology, access to resources, and our own smarts will protect us. So when we are seeing these astronomical death counts, and the lockdowns are disrupting all our lives, many would rather cry foul, or blame the mortality rate on the victims poor health or maintain it's simply the flu even when all legitimate data proves otherwise. I believe one reason for these behaviors is that many people simply don't want to feel vulnerable to this tragic circumstance, and setting themselves apart with views that distance them from reality helps them feel safe and superior.

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But, of course, this collective dissociation comes at a collective price.

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Terry, in the book, you talk about a spiritual retreat, went on to Peru where you did Iosco and a couple of the people there Gabrielle and Pablo, some of the leaders try to blame your illness on you.

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Gabriella basically told you to just get over it, and public kept trying to give you that you are getting stronger while you are actually getting weaker. How do people trying to blame your illness on you make you feel,

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in my mind, I had strong reactions, it felt bad, and ties in with what we've been talking about the myth that we have ultimate control over our fate, as opposed to having control over our responses to what happens to us. It's easy as an outsider to try and coach someone into the idea that enough faith can heal anything, but it's an entirely different experience to be living in a rapidly declining body with a terrible prognosis. For this reason, I think we need to be careful about what messages we give each other about serious illness. Because the idea that if we fail to recover, it's only our fault can be very harmful, and nobody needs that additional stress and outsized responsibility for a difficult circumstance. It's not healing and a more helpful message for me was you have influence over your well being, which may or may not make it possible for you to physically recover. But the more you can allow yourself to relax into unconditional joy, pleasure and trust in possibility, the more you invite miracles to the table. This makes sense to me too. There have been many times I thought I knew what was best for my life, only to later find The so called disaster I didn't want to happen taught me an important lesson I needed to learn.

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Target I wasco retreat I Alaska showed you that we don't die, that we just change form, which is the first time you realize this. And what were your beliefs in an afterlife prior to this experience?

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Well, prior to this, I believed we have an ongoing journey as souls, I was very much on board with a Buddhist notions of reincarnation. But these were more conceptual beliefs. As I had never personally experienced that continuity of consciousness firsthand, at least not that I have remembered, I imagine io rasika gave me the closest thing to a near death experience that anyone can have without actually being near death. And it's hard to describe what took place, because reality just became so altered. But sure enough, in that timeless state, it became crystal clear that something within us the most vital part of us, in fact, endures outside of a body. And I can't really capture how enthralling this was to see, in that moment, my fears toward death just evaporated, and it was so liberating and relieving. And

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really, this is more of an observation and a question. It was right after the Iosco experience when you had this realization about the eternal nature of life, that you slipped and you suffered major trauma to your head. I loved how in the book, you kept the back and forth between the physical world that we all inhabit, and our true nature that you were discovering, there were no tidy answers was back and forth.

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Right after having this amazing realization, you have this accident. In the book, you keep this all very real, and you keep reminding us that there are no tidy answers.

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Yes, I can't say that was intentional for me to be weaving back and forth between ultimate and relative reality. But it did end up being a big theme of the book. Perhaps it's fitting in a book tracing a perception a narrative between worlds. And I believe the question of how we relate to limitations in 3d reality is so important. Because while it's alluring to want to bliss out on oneness, the great perfection, universal love, yada, yada.

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Meanwhile, day to day reality on Earth has some mighty sharp edges. We're still tossed around by our HMOs and struggle to understand our income taxes and need to investigate whether or not our cats daily vomiting could be a sign of pancreatitis.

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And don't get me started with climate change and systemic racism and how there are still questions for some folks whether or not this pandemic is real and poses a serious threat to public health. I mean, these times aren't for the faint of heart, and no amount of spiritual realization makes the difficult stuff go away. There really aren't any tidy answers. And I believe it's an imperative for all of us to deeply inspect what it means to live Love and Light instead of just using it as a trendy hashtag. It seems to me that true spiritual maturity has to do with growing our morality, ethics and tolerance for complexity. That Yes, for any number of reasons, we may have trust in the whole cosmic shebang. But that doesn't mean we shouldn't stop evolving our engagement with an understanding of relative reality. I think we don't get to stop asking what compassion and loving kindness actually look like in practice, whether for others or ourselves.

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Terry, one point you follow Joe dispenza, and even attended one of his retreats. Now, Dr. dispenza, famously claimed that he held a spinal cord injury by using the proper meditation technique. As you're going through that the quote in your book is, even if humans don't create objective realities, I know we can create or at least heavily influence our subjective realities through our outlooks. I loved your take on this. I'm frankly a little skeptical these people that say that we can change the rally around us or heal anything through our minds. So as after you follow Joe dispenza. What did you take away from his retreat and from his techniques, and would you recommend others?

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What Joe dispenza has done, as far as I can tell, is graphed a very alluring mashup of law of attraction concepts, visualization, mental rehearsal, hypnotic technique, and cherry picked, and sometimes controversial, scientific research into a saleable and actionable package for creating one's own destiny, and people hungry for change, go absolutely nuts for it. I know his work has helped many people improve their lives in all kinds of ways, and in many cases improve their health. You can find hundreds of glowing testimonials from students online, and I met many people at his retreat who reported significant changes for the better through engaging his system for life transformation.

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I'll admit, his whole approach held my attention for almost a year and undeniably improved my subjective outlook during that time. I felt hopeful about the creative possibilities my future could offer when I was heavily engaged in his lectures and meditations and very open, and I totally get why people get excited about it. I mean, who among us doesn't want more influence in how our lives unfold? If it only requires an hour or two of meditation every day, and consistent attention to our thoughts, it seems like a screaming deal. But as I hinted at in the book, there's a shadow side to the narrative that anything is achievable with enough belief and effort. This worldview conveniently overlooks the fact that we are not living in vacuums somehow divorced from larger forces beyond our own minds. And we are living in relationship to environments, lineages, systems, and other beings, all with their own histories, force and momentum.

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And we're all living from unique social locations with bodies that have sprung from our ancestors and the genes, grid, and traumas they carried. And we all eat plants and animals that carry their own histories of nurture or neglect. And there's an ongoing reciprocity happening on material and energetic realms, the full measure of which is impossible to quantify.

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This means when we buy into the idea of our own omnipotence, we either become delusional in our grandiosity or are setting ourselves up for a painful reality check, or both. When I bring up these sorts of ideas in Dr. Joe's online groups, they usually get challenged fairly quickly. And sometimes I was told I just needed to meditate more. The one time I dared to suggest that Dr. Joe wasn't God, and that it's okay to question what he says not only did my post get deleted, but other students told me to just leave already. Funny thing happened though, because enough people saw my provocative post in that brief time to start messaging me their stories of how they were hurt, or gas lit, or increasingly disillusioned after engaging heavily in the community. They just didn't know how to talk about it. And my questioning had given them permission. And it's worth noting that I think any charismatic teacher or spiritual community runs the risk of becoming cult like if you're expected to be all in and leave your doubts and questions at the door in order to benefit and for a while I went through a period of extreme wariness of any spiritual narratives or teaching scenarios that can be used to Gaslight people. Now I see that a lot of beautiful teachings can coexist with harmful teachings.

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And the figures offering the teachings can simply have legitimate blind spots like all of us, or they might be engaging in a ruthless ego and power grab. It's up to us to learn how to spot the difference and help each other do the same. And from there, we can take what we like and leave the rest.

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Just take what you like and leave the rest. I like that. I remember when I was a little kid in Sunday school, and they were being taught Christianity, at least their version of Christianity. And one thing they told us is you couldn't do it like a smorgasbord. You had to take the whole thing, whatever they taught us, whatever the Bible said, whatever. And I will never do that. Again. I will never take what anybody says wholeheartedly without questioning anything, and I can take what they like or what I like and leave the rest. So I just want to kind of echo that point. I really enjoyed the scene in the book. Were you in john a role playing being in the spirit world and planning this life? You guys didn't have really great time together and like the scene where you're just planning these crazy challenges you would take on here and doing it kind of a joking fashion.

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Reminds me of the scene and Natalie Sutton's near death experience, where she and her guides are planning which injuries Natalie will be left with after injuring an IED explosion, and how that they could be cool to liver blind or with one leg? What are your thoughts on soul planning? Do you think this was planned? And do you know for what purpose?

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Gosh, Brian, I really don't know. I certainly love the thought of a soul plan because it could explain the unexplainable and who doesn't want that.

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And here's what I do know.

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One, the synchronicity is pulling john and i into a partnership or remarkable. I know it sounds cliche, but I believe we were meant to be together on some deep level. In retrospect, seeing how much we've grown together through this experience. It makes sense that this incredible challenge was meant to be and we needed each other to get through it. To all the little things that I've said before I knew I was carrying a terminal illness were truly uncanny. I mean, who wants to be per Stephanie? I somehow knew some soul challenge was coming.

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Is it possible something and me remembered the plan. And three, I always want it to be a writer and I always loved writing and occasionally felt I could barely wait until I gave myself Self over to it completely. But it never seemed like a practical enough way to spend my time. So I was always engaged elsewhere.

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Until that is, all of my other practical abilities were stripped of me by paralysis. And despite how difficult my day to day reality is, I'm deeply fulfilled by the practice of putting thoughts and feelings into words, and feel like I have something of value to share with the world. And though I still grieve everything I've lost, I feel I'm completing my mission as much as anyone can claim to be. Now, I suppose it's possible that it's all just random and unplanned. And I'm only seeing meaningful patterns for my life.

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In retrospect, we humans are storytelling creatures. But at a certain point of denying overwhelming evidence of synchronicity, we're not being clever or critical minded. We're simply being stubborn in our marriage to scientism. And so right now, I'm leaning towards the likelihood of a meaningful desygner, at least broad outline for my life scores.

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It sounds kind of like you do that back and forth that I do, Terry, the wanting to believe that there's some purpose and design and that it's magical, as magical as it seems, but also being pulled back by the world telling us that, you know, it's all just materialized. It's all just random. But I have to say, in my own life, it's just been the evidence you said has been overwhelming, the synchronicities that have happened. And I've I've finally given into that, and what I've found is the more I give into that the more I give it to that the more I seem to see the patterns playing out. So yeah, that's that's a really interesting answer. In the book you mentioned Nina murjani. And her indie and and how after her in the her newfound outlook on life, actually ledger cancer being completely cured, and I've fuddled Amina murjani. And I've read her book. But this seems like a kind of a tidy answer to me, that if we just have the right believes about ourselves, that we can cure anything, and I know that you were probably told us at some point, or you were told at some point during your journey. So what are your thoughts about this idea?

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For all I know, Anita moorjani was correct that her forgiveness healed her of cancer, I have no good reason to doubt her, or to doubt the many other people throughout time who argue their shift of heart initiated unlikely, and sometimes profound physical healings. I do know some of the insights and healing as I've experienced, often in altered states could be explained away by skeptics, even if I know in my heart What happened, science is still learning about how our psycho emotional outlooks have significant impacts on our immune systems. But can we cure ourselves of anything? And I find that hard to believe, especially for the majority of us mortals who don't happen to be Jesus of Nazareth? And I think a good question in response to this idea is, are we always meant to physically recover his perfect health, or living the longest possible life, always the highest goal is, what happens if we're more served by learning to live with limitations, or by learning how to trust and surrendering the outcome. And I'm also answering this with a critical light towards ablest beliefs which say disability is unacceptable, as if a failure of some sort.

00:33:21.630 --> 00:33:30.720
Sometimes limitation or difference helps us learn or create or serve in ways we never would otherwise.

00:33:31.588 --> 00:33:36.808
Yeah, Terry, I love that answer. And I love that's why I love the book, because it's full of wisdom like that.

00:33:37.318 --> 00:33:47.278
As I've grown older, the idea of manifestation of material goods or even physical health, maybe that's not what we're meant to manifest, maybe we can manifest.

00:33:43.528 --> 00:34:06.298
But we don't really know what's in our highest interest at any moment in time. And maybe what it is, which is desire is to manifest peace, to manifest acceptance, to manifest joy in every circumstance, whatever circumstances we happen to find ourselves in, that I believe we can manifest. And as far as manifesting external things, I think the jury's still out on that a little bit.

00:34:06.630 --> 00:34:10.110
Yes, I believe so.

00:34:06.630 --> 00:34:55.230
This is where the established wisdom traditions and lineages, like many within Buddhism often show more nuance and maturity than new agent New Thought philosophies allow for if your happiness is dependent on manifesting material success, power, or physical recovery, for example, that satisfaction is really conditional. And real life doesn't work like that. We never just expand our greatness forever, or can avoid heartbreak forever. And ultimately, we're all headed to the same place, no matter how special or enlightened we feel we are. If, on the other hand, you can develop an unwavering sense of well being and workability despite external circumstances, then you are truly wealthy.

00:34:55.769 --> 00:35:15.900
So the next question I have for you, I wonder, as a Buddhist, I think you're trained that one of the things Just really supposed to get is that we are not our bodies as we as we meditate on that. So yet in our Western culture, that's a trap that most of us fall into. We think we are our bodies. Does your Buddhist training help you making this differentiation? And what is your relationship with your body like now?

00:35:16.500 --> 00:36:12.539
I may have a unique approach to this question because my experience of Buddhist practice springs from a specific lineage and teacher and I certainly can't claim to speak for Buddhism as a whole. And I have ongoing questions about where my former teacher pulled together his unique canon of teachings and practices. And that's a larger discussion for another day. But I can say that I was taught to really inhabit my felt experience in an intimate, immediate way. And through 1000s of hours of body focused meditation, I've learned to stay home, so to speak with sensations and feelings that arise in my summer, I've learned that so much of the emotional and somatic experiences we humans want to hide from can be made more workable by locating where in our body they reside, and breathing increased space into that area. This has been deeply helpful to me as I endure a difficult physical experience.

00:36:12.659 --> 00:36:47.369
And I'm grateful to have this training and mostly now I feel a real appreciation for and tenderness towards my body. It's a true Marvel, and somehow keeps on trucking despite its major malfunctions. It's funny, because I was temporarily thrown off course when my palliative care doctor told me I definitely had less than six months to live and I forgot to ask my body what was true. And here I am. 16 months later, only slightly weaker, yet feeling vibrant.

00:36:43.289 --> 00:39:19.769
Internally, it's been a great reminder that I have to keep checking in with myself about my health, and whether or not to swallow a given prognosis. I should admit, though, that after working so hard for years to manage my health through a squeaky clean diet and exercise, it's been quite liberating to let out the reins. Since entering hospice, I've really relaxed my highfalutin expectations for how to relate to my body. This means I now eat chocolate whenever I please. And I'm not above having say tater tots with dinner. I'm sure many nutritionists would screech on this. But I believe I've earned the right to relax the health rules and I still listen to what my body needs. I still eat my brussels sprouts. But I try to also honor what my playful, comfort loving Spirit wants to and it's been so satisfying. And my body seems to be handling the indulgence is just fine. A lack of shame or anxiety about my environment, and my desire helps. Who knew the life lessons apparently never end. Now, having said that, I've also found it useful to purposely shift focus when being and my body feels claustrophobic. And one of the techniques I learned early when meditating, which is also used in painting, dance, and martial arts was softening the gaze. Contrary to focusing on visual stimuli, we may hold more of an evenly hovering awareness which receives our environment in a more muted, gentle way, when our awareness springs forth from the back of our body as opposed to the easily distracted sense of visual sight. This facilitates relaxation and helps build an intuitive sensing function. All of the senses become more evenly engaged, which ideally encourages more presence and equanimity. And when this teaching is more fully mastered as an inner posture or attitude, we can bring it to other parts of our lives as we lose some of the grip on our habitual ways of viewing things. It naturally tight rates physical or emotional intensity. For example, instead of focusing on how embarrassing it is to have my husband bathe me, I can tap into everything that feels workable in the moment. The bathroom is warm, the light is soft, my energy is holding steady, his energy is gentle. In this way. I remember I can healthily dissociate from unhelpful conclusions and from unnecessary suffering.

00:39:21.719 --> 00:39:38.400
You talk about how often the battle metaphors use when we're fighting illnesses, oh, my God, terror. Did you fight the good fight? You travel? You tried all sorts of cures, you did these things. You did nutritional cures, you went on retreat, you went to different treatment centers. You talked about support groups.

00:39:35.820 --> 00:39:45.539
Also people are encouraged to keep fighting and they keep fighting and keep fighting. Do you think there's a time to surrender and what is surrender do for us? a

00:39:45.809 --> 00:40:26.849
drastic prognosis of ALS. One of my friends who is very active in her advocacy for the ALS community asked after reading my book if I think patients should fight so hard to try to Beat the disease when there are really no medically sound interventions. Because, believe it or not, I'm not unique in my extraordinary fight against this illness, quite a lot of us throw absolutely everything we can get in an effort to accomplish the impossible. I told her I think the decision to surrender or not surrender should primarily be driven by patients themselves.

00:40:22.920 --> 00:40:26.849
Only we know what we're up for.

00:40:26.969 --> 00:40:43.079
And when it's time to let go, or shift goals. And I'm betting those patients who ended up reversing the disease were mighty grateful, they kept pushing, despite all the logical reasons to surrender earlier.

00:40:37.349 --> 00:40:56.489
But I realized now, if I would have devoted more effort early on towards accepting the likelihood that I would not be able to fully recover, and working to integrate the grief and devastation of that I might have found a more measured and workable goal to work toward.

00:40:56.489 --> 00:41:23.369
And, for example, I could have simply work toward improving my quality of life for however long I might have left, and maximizing my well being for the long run of living with a progressive disability. As it was, I was in a frantic black and white dash to fix myself fully to return my life to a state I considered acceptable in terms of phases of grief, I was lingering in denial and bargaining for quite a while.

00:41:23.369 --> 00:41:28.650
And, of course, this was not a mind state conducive to healing.

00:41:28.980 --> 00:42:11.909
As I've learned, healing often requires a healthy dose of relaxation. And interestingly, letting go. By the time I was ready to accept the reality of having a terminal condition. I was emotionally, spiritually and physically exhausted, and I had no energy left to fight. And my surrender, therefore came as a merciful relief. And it's like, I gave up on the enormous effort of paddling upstream, and just decided to let the river Take me, I could cry, I could breathe, and I could let myself be carried by this force much bigger than me. And I found that letting myself be carried downstream met, I could finally notice the scenery around me.

00:42:08.130 --> 00:42:16.440
And what do you know, there was still a ton of beauty in it.

00:42:11.909 --> 00:42:57.210
This decision to let go was healing in and of itself. And the trick, as I see it, is to continuously turn over the outcome of our efforts. This is why having a relationship to a personal higher power is so helpful for surviving ordeals, and building resilience. It doesn't matter who are what that power is defined. As for us, as long as we have some way to put our life and its figurative hands. At a certain point, we need to be able to say yes, this is not the same as agreeing or liking, but it is necessary for accepting reality. And once we accept, we have all sorts of choices and possibilities for moving forward with grace.

00:42:58.139 --> 00:43:16.860
You talk about life as a series of many deaths or losses, setting us up for the final loss of death. I thought it was a great observation. And it's one Frankly, I'm only now coming to everything is impermanent and all throughout our lives, we're constantly letting go of something or being forced to let go of something, something's taken away from us.

00:43:17.280 --> 00:43:27.869
But you don't end it there. You observe that after the quote loss, we always move on to something else. And you question why we think this ends at the death of our bodies. Could you expand on that?

00:43:28.440 --> 00:45:01.590
I'm not sure I could say much more, because you just nailed it. And, of course, this perspective of death being another transition among a lifetime of transitions rests on the premise that consciousness survives physical death. And if we didn't share that perspective, to begin with, this would be a much trickier point for me to argue. But let's assume your listeners are more or less open to the idea to foremost, most of our lives, we are in a transition of one type or another. We travel through life stages, identities and roles. We change schools, jobs, careers, and if we're able, we have the choice to retire, we gain and lose beloved pets, family members, and friends as our bodies change, sometimes slowly and sometimes in an instant. And you could argue that we are always between worlds in a way and have to grapple with all the feelings that come up while straddling multiple realities. And the only thing we don't have his guarantees, except, of course, the inevitability of our own death. And I believe what makes physical death more monumental than other transitions is how it's also a shedding of the ego, the part of us which identifies as a solid, continuous self with boundaries we need to defend, but from what I understand, when we shed the ego in such a way, we also shed our fear and our perspective suddenly expands. I have Feeling that we will know.

00:45:01.679 --> 00:45:09.059
Or I should say something in us knows how to navigate that transition more than we realize.

00:45:06.090 --> 00:45:09.059
And I like

00:45:09.059 --> 00:45:56.280
to go back to where your book begins with the no tidy answers lessons. Your book is titled no pressure, no diamonds, and people could maybe think this is a spiritual bypassing book, we're just like, we're going to say that, you know, it's all good because we the pressure produces the diamonds, but I love the balance you have in your book. And you say the idea of finding diamonds deserves care and nuance. And it's probably up to each survivor to decide how much and when if ever, it's worth embracing, you say that the loss itself is not a gift, the loss is just lost. In the military, they use the phrase embrace the suck is just embracing where we are, and just dealing with the circumstances that we find ourselves in. So how does one find that balance between fighting and surrender between trying to see the bigger picture and acknowledging that life isn't always the way we want it to be?

00:45:57.360 --> 00:46:32.969
Here's how I see it. Man, I swear. We all know shit happens. Sometimes, unbelievably ugly shit happens often at the worst possible times, we rarely see it coming either. No amount of piety or cleverness on our parts can fully prevent this reality from touching us at some point in our lives. And we may never be able to make sense of why certain painful things have happened, and whether we could have altered the outcome somehow. And we may not ever believe whatever good things arise in the wake of last may get a worthy trade off.

00:46:34.590 --> 00:46:45.510
But we always have the choice to mine. Whatever lessons we can from it. The process of mining meaning can be a part of the healing. David Kessler, who worked closely with Dr.

00:46:45.510 --> 00:47:25.650
Elisabeth Kubler Ross recently wrote a book identifying, finding meaning as the sixth stage of grief. And the good news is, we all get to choose how we go about making meaning of the painful parts of our lives. And often it comes through in a service for others, a work of art, a new sense of purpose, or a worthy fight for humane legislation. On the day, a young woman who was recently diagnosed with ALS wrote me to say my book helped her trust she could get through the future she now faces, I cried with enormous gratitude and relief. And suddenly, I knew beyond a doubt that all my effort was worth it.

00:47:25.800 --> 00:47:37.650
And my pain had been transmuted into an important gift for someone. And we all carry the potential to offer of ourselves whatever we can for the benefit of others, which I believe is a beautiful thing.

00:47:38.670 --> 00:47:46.500
Terry, as I got to the end of the book, I realized I wanted to hear from john I was pleasantly surprised to find out that he wrote the afterword.

00:47:43.619 --> 00:47:59.130
Now, I'm sure you've been told many times before the john is a hero, and he is for taking this journey with you. I'm sure you've also been told how brave you are. And you are for enduring what you've endured and for sharing it with the world.

00:47:56.039 --> 00:48:01.500
So what do you want to say to us about you and john as compared to ordinary people?

00:48:02.460 --> 00:48:42.420
I believe it's true that john is doing 1000 heroic acts every day, and deserves real accolades for that, it's quite monumental, as does my mother, Debbie, who generously upended her life to move to snowy Colorado to help us and for that matter, so does every other devoted caregiver to a loved one carrying a heavily compromised body or mind. Anyone who chooses day after day, moment after moment to show up for another person's care and well being in such an encompassing way, no less is truly manifesting the energy of a bodhisattva. But I believe this is not so uncommon.

00:48:42.539 --> 00:48:50.190
Actually. When you put ordinary people into extraordinary pickles, they often become extraordinary out of necessity.

00:48:50.519 --> 00:48:58.260
I mean, look at what frontline health care workers are doing across the country right now.

00:48:54.150 --> 00:49:41.880
It's incredible. And ALS patients, on the whole, along with many other people bearing significant disability are true warriors of determination and courage. It's not that those of us showing up each day to meet our uncommonly challenging lives wouldn't choose an easier softer way if we could. It's just that loss and adversity can change us in ways we'd never expect and clarify our motivation and commitment. They can polish our hearts if we allow them to. And I believe the more we can allow what's painful in our lives to enlarge our vision and our empathy, the more our challenges inspire us towards fighting the good fight for other beings, then the more likely we can help ourselves and each other survive our dark nights.

00:49:42.750 --> 00:50:03.059
Terry, as you know, my podcast is called grief to growth and people are inspired by stories like Anita moorjani, as we mentioned earlier, they end up with the miraculous physical healing, a cure of the illness that is ravaging the physical body. But we know that's not always a path for everyone. Can there be a healing without a cure for the illness, can there be any Healing without a healing of the body. And what is that healing?

00:50:03.539 --> 00:50:17.849
Yes, it's such a great question. And I think that this is difficult to answer because the word healing is used interchangeably in physical, relational, and emotional contexts where the aims and end points might be quite different.

00:50:17.849 --> 00:50:36.090
And generally, we could define healing as a move towards greater wholeness and integration, or even a transmutation of past wounds or weaknesses. But even this definition is tricky. Because when do we ever stop learning, integrating and evolving?

00:50:32.190 --> 00:51:59.730
There's always more shadow work to do and more reparations and amends to be made. And can we say we are fully healed while living on a polluted planet with a distribution of resources benefiting the few at the expense of the money? And these questions are far beyond the scope of this discussion, of course, but I think you can understand my point. But if we're going to limit this discussion to the mind body connection, which is a more manageable subject, I'll still go out on a limb and propose something that will be unpopular to many spiritual seekers. And I say this as a lifelong seeker with impressive credentials in everything commonly considered woowoo. I believe the mind body connection, as popularly conceived in the New Age, heart is largely overblown, or at the very least, it's poorly understood. And unfortunately, this misunderstanding gets used as a weapon against people who are struggling with a health issue. And yes, it's true that our mindsets affect our immune systems. And yes, forgiveness and self love can have remarkable impacts on our well being. And yet, the notion that a healed spirit will always lead to a healed body strikes me as simply delusional. You can live to a ripe old age with a lot of hardness and fear in your heart.

00:51:55.409 --> 00:54:29.369
You can also fancy yourself as a guru of alternative health, while spouting a ton of contempt and judgment for those who, for one reason or another, can't simply manifest a conventionally acceptable body. And we're actually seeing this a ton right now with popular wellness influencers who are revolting against common sense public health measures. And neither of these scenarios to me express health or wellness. And yet, you also see so many children with cancer, or other life altering illnesses and conditions, who are straight up warriors of empathy and gentleness, you can find people in bodies of every shape, size, ability, and precarity, teaching us all how to love and how to forgive. And so to me, it's not always a straightforward equation that our bodies are a reflection of our spirits. scars, for example, are conventionally considered ugly, yet they also provide evidence of regeneration and adaptation and their strength and beauty and scars. Regarding my own healing, I wouldn't say I'm healed, because I don't believe there's an easily identifiable end point to the journeys we are on. But I would say I feel satisfied in the healing I've done throughout this slow dance with terminal illness, even though it never manifested a recovered body. I think whenever we choose to grow in our willingness to course correct and admit our mistakes, we are healing and whenever we slow down enough to allow our own heartbreak and grief to be fully met and honored, we are healing and it's healing to self define what wellness means to us to identify where beauty and empowerment and choice always exist in our lives. And we can just keep doing our best to allow what feels ugly and unresolved in our lives to open us up to possibility and division instead of shutting us down. And we can keep learning how to ask for help earlier and practice forgiving ourselves and each other when we inevitably stumble. And eventually we can become quiet enough to recognize and soon act upon our deepest knowing for what unique offerings we are summoned to bring to this world. And in this way, we embody vitality, we manifest wholeness, despite being in perpetual flux. I believe there's powerful medicine in such growth for our own spirits and those whose lives we touch. And perhaps that's all we ever need to live a beautiful and meaningful life.

00:54:27.510 --> 00:54:29.369
And

00:54:30.360 --> 00:54:40.829
while Terry, I'm not even quite sure how to wrap this up, I'm not sure how to put it in the words that would do justice to how fortunate I feel to have had the opportunity to have had this conversation and to put it out into the world.

00:54:41.369 --> 00:54:54.570
I've had a lot of books that have impacted me a lot that I've actually forgotten that I've even read. Your book is one that had an immediate impact on me and will never be forgotten. And I'll never forget this conversation either. So I'm truly honored to have been able to do this with you.

00:54:55.260 --> 00:54:57.989
Thank you, Brian.

00:54:55.260 --> 00:55:12.900
You've asked wonderful questions. So this has been a very enjoyable discussion for me too. It's an honor to be featured on your podcast. So thank you for giving me a voice here. And thank you for your great work. I know you are helping so many people

With No Cure For ALS She Chose To HEAL

Teri Dillion

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