Escaping The Pain Box – John Shines Bright Against RA Adversity
You’re about to learn:
– How John was diagnosed with RA at aged 8
– How loneliness and ‘being in the Pain Box’ took it’s toll
– Using food as comfort from the pain and struggle
– How to love ourselves as an adult the way we loved ourselves as a child
– How a restricted diet is not as hard as having endless pain
– How the gut drives RA
– How education is everything in disease management
– How John and Clint will build a friendship and a plan in the Paddison Program Support Forum
Disclaimer -the information on this site is not medical advice. Before making any changes to your lifestyle, diet, exercise, drug or supplement routines you must first discuss the changes with a licensed professional.
Clint: Thanks for joining us today on the Paddison Podcast. Today we’ve got John on this episode and we’re going to look at his situation and break it down and find out where he’s got some of the current challenges and then I’m going to talk about what I would do if I was in John’s situation. So, thanks very much for joining me, John.
John: All right, thanks for having me.
Clint: So, mate, I got a few notes that you sent through beforehand. I believe you’ve had inflammatory problems for a very long time, so why don’t you give us a quick summary and then, once we’ve had that, you can throw me some challenges that you’re currently going through.
John: Okay. Wonderful. Yeah, I’m 39 years old and I was diagnosed 31 years ago, seemingly overnight, honestly. I recall going to bed and waking… going to bed, nothing. Waking up and not noticing anything until I walked down to see where my family was and the first thing my mother said was, “What is wrong with your knee?” I didn’t even notice it myself.
Next thing I remember I was in the emergency room and the doctors were taking samples and then physical therapy was a part of my life for the next, I don’t know, eight, nine years and basically really not knowing what was going on. The doctors were speaking over my head to my parents. I wasn’t in… an overwhelming sense of being out of control, being in a lot of pain. I’d say the most acute years were the first… probably until I was about 15, so I’d say the first seven years. Lots and lots of oral medications and medications to stop the side effects and moved on to some gold treatments and to… we eventually… so, I always had anti-inflammatories and then some sort of stomach coating things because I had a lot of stomach ulcers early on.
Clint: Yeah, I’m not surprised. If you were taking a lot of nonsteroidal anti-inflammatory drugs and things like that, just general painkillers.
Clint: What were you taking? Just for my listeners who’d be interested, me as well. What were you taking to try and offset the stomach ulcers that all those nonsteroidal drugs were giving you?
John: Honestly, it’s so long ago now. The only one I remember was Tagamet, liquid.
Clint: Right, okay, okay. And were they effective? When you had these stomach ulcers, did it mean that then you had to go off the painkillers for a period of time and doctors would say you can’t take them and so forth?
John: Let’s see what I recall and I’m sure my memory is quite… is not completely accurate. I don’t remember having to get off of them. I should ask my… my mother was running the show. Would you like me to go ask her quickly?
Clint: Look, I don’t think it’s that critical, no.
Clint: Let’s move along and I didn’t mean to put you in that position. It’s just I thought if you did know, it would be kind of useful but there’s going to be so much other stuff that’s going to be really interesting to folks.
John: So I think… I just remember knowing what the sensations were. I remember telling people, “Here comes a stomach ulcer.”
John: And they would change a protocol and then we’d get back on but it was a cycle, for sure. Once methotrexate came into the picture around 15, my lab reports came… they started to normalize, at least get into the range that the doctors were telling me they wanted. The only thing I remember was sed rate, the sed rate levels, finally. It was a huge deal and we got to celebrate…
John: … healthy sed rate level and methotrexate kept me in a pretty good way until my doctor switched me over to Enbrel.
Clint: Okay, at what age was that?
John: That was probably… I think… it was as soon as it came to market.
John: Maybe ’98.
John: I’ve been on it for…
Clint: On it a lot of time, yeah.
John: … a long time now and for many of those years, I’d say until about 2006, I was also taking oral medications. A partner of mine at the time, she was actually studying Chinese medicine. I grew up in Mississippi, which is a very conservative part of the United States and much more religious than scientific, I’d say by and large… at least a science… or maybe it’s religious and scientific but it’s definitely not alternative, so everything in the middle, I wasn’t really exposed to until I got out to Portland, Oregon where I lived for the next 16 years. It was out there I got exposed to a brand new world and, truthfully, it was even more overwhelming. It was much simpler when it was either “Take this medication and say your prayers.”
Clint: Yeah, for sure.
John: Once I got exposed to the… once the world opened up and all the options came, it actually got a bit more challenging.
Clint: Just as a little comment. My wife’s told me that Portland is a fabulous place.
John: It sure is. Yeah, it sure is.
Clint: I believe it’s very, very open minded to change and forward thinking and technologically advanced and all sorts of wonderful things happening.
Clint: Yeah, so I didn’t…
John: It was a big education.
Clint: Yeah, I didn’t realize that until it was brought to my attention about a year ago. My wife was raving on about it.
John: It’s a gem. It’s a gem. It’s booming.
Clint: Yeah, right, yeah.
John: A lot of people moving there. So, I got off the anti-inflammatory or the oral medications in about 2006 and didn’t really notice much of anything.
Clint: And what was that? Sorry. Those oral meds. What did you then come back down to? Just the Enbrel?
John: Just the Enbrel.
Clint: Okay, okay.
John: Yeah, just the Enbrel. I also had a lot of chronic anxiety that I was also being medicated for over the years. I don’t know if there’s a big correlation between anxiety, especially with children raised with… growing up and developing with chronic illness or not but that was a massive part of my experience and at least in my inner world, I felt like I was handling the two things and they often felt very connected to me.
Clint: Oh, I can only imagine. I mean, I know what it’s like to go through it as an adult and anxiety, I think, is something that would adequately describe the adult experience as well, so I can only imagine as a child, where you don’t have an understanding of why this is happening to your body and you don’t have an ability to research it and to find out more, that it would very much feel like you were being led into a path of unknown and that causes anxiety for everyone. Meanwhile, being in excruciating pain the whole time, I mean, it’s totally normal to feel a high degree of anxiety under those conditions for anybody, I’d imagine.
John: Yeah. Yeah, yeah. Well, the reason I ask that is I had been put on Prozac as well since I was probably 17 when my anxiety and panic attacks got to a pretty severe level. So, 2006, I come off of the oral anti-inflammatory, left with Enbrel and some stuff for the anxiety and a lot of marijuana, actually.
Clint: Okay, yeah, yeah.
John: That’s something that I… it actually was probably the biggest relief for me, certainly, for the anxiety but it eventually became very problematic and these days I’m on… I’ve been able to… through a final breakdown when I was about 35… it led me much deeper into a spiritual path and I’ve gotten off of the all the Prozac and the Celexa which I had been on at that point since I was 17 and no more marijuana. I actually felt quite addicted to it. That’s become… growing up with a high pain level, I didn’t know it wasn’t normal and so my relationship to pain… I don’t know what normal is, quite honestly, and where I’m going with a lot of this is I’m plenty educated about… I’ve heard, actually, every opinion possible from medical doctors saying, “You’re going to have this for the rest of your life, no ifs, ands or buts,” to various faith healers saying, “You need to access rage,” and everything in between, to the point where I’m dizzy. So, it’s not even about… for me, it’s not about knowledge. It’s more about the inner game. It’s more about being able to regulate and cope and stay in my body because I’ve had so long… It’s even emotional just to say it. For so long I’ve been trying to get out of my body.
John: And just staying in my body, it’s a full-time job.
John: And then… so, food was my earliest coping mechanism. It was my earliest way. When I would leave doctors’ appointments early on and I’d be scared, I’d be asking my mom, on some degree, “Am I going to die?” What would make me feel better was a treat at the store after… or maybe the disappointment of another bad blood work I got.
So, varying ways of coping mechanisms. I’m trying to unroll them back, food being my oldest one and I’m finding it very, very, very difficult to let go of food as comfort and so I’ve read all kinds of things about the anti-inflammatory diet and I even feel like I understand that, at some degree, it’s… there’s no cure. It’s a body-by-body scenario and you need to do an elimination diet to give your gut a chance and I haven’t found myself able to do that, sadly enough, either for willpower or an inability just to stay calm and, most importantly, being alone, feeling very alone because I’m not connected with other people sharing my experience.
In fact, it wasn’t until I volunteered for… the Portland Arthritis Foundation is really wonderful and they have a wonderful summer camp for children and their families and those are for 300 people and about 80 children. It wasn’t until I volunteered there three years ago that I met another person with my condition.
John: So, this whole time I’ve just been flying solo, trying to fit in and, in fact, I think when I was… once methotrexate brought my symptoms down, I remember telling myself, “This isn’t a big deal. You have no reason to really… this isn’t a problem. This isn’t a serious condition. It’s not cancer. It’s not AIDS.” So, I was really setting myself up for… giving myself a… it was hard to give myself a break.
John: Meanwhile, these last three years have kind of just been dissolving and realizing it’s a huge deal, these medications are a huge deal and I’m stuck. I feel stuck.
Clint: Okay. Okay.
John: So, there’s about 31 years in a few minutes, so I hope that came through clearly.
Clint: And thank you for being so transparent about all of that and putting all of that information out there because these things are so, so intertwined with our emotion and our identity of who we are and how we feel about ourselves as a person and sharing these things, it’s not easy. It’s not easy to talk about these things and so I’m really grateful that you gave me all that information and I’ve taken some notes here and I want to… I’ve put little boxes around some things that you touched upon that I want to talk about in response.
So, first of all, I’m going to try and go through the simplest, quickest ones first because that way… I just find that easier, the way that my brain works. So, first of all, you mentioned the feeling of being alone and the feeling of having this disease and not having someone to talk to about it and I’m going to be straight up here. For a long time, I did not want to speak to anyone else with this condition nor my family about this condition. In fact, if I could’ve went through life without anyone knowing that I had it and without me ever having to say the word rheumatoid or arthritis ever again, I would’ve preferred that. I did not identify with the disease and I just wanted it out of me more than words could ever express.
Okay, so, you said how you went all the way until you basically got back just to the Enbrel and I think you said 2006 or maybe three years ago, so let’s call it 2009. No, sorry. What are we? 2016? So, 2013 is when you actually did the volunteering, met some other people with the condition and so forth. So, I had the condition right through… it was only when I was off my medications and started to become an ambassador for Arthritis New South Wales here in Australia did I meet anyone else with the disease.
Clint: I was not…
John: I used to say I was just in a pain room by myself. I actually had a phrase for it.
Clint: A pain room. Yeah, yeah. Yeah, that’s right. You go into your room…
John: Some sort of psych ward where there’s no windows or something like that, all white walls.
Clint: Yeah, yeah. You feel like punching the walls. You just get so frustrated on the inside, you just feel like… I used to sometimes just roar like a wild animal in anger and frustration just because the sensation that the attack is coming from your own body. So, it’s so torturous because it’s not like someone’s doing it and you can separate them from you and you feel safe. It’s that it’s from the inside and that is something more sinister than, I think, we’re normally meant to be able to tolerate. It’s really… yeah.
So, with that in mind, that was one of the reasons that I set up my online coaching and community forum because I realized everyone was exactly like me. Everyone was living in these isolated pain rooms, as you refer to it, and no one was talking to each other but all the science shows that if you communicate about this disease on a regular basis, you clinically do better than people who do not communicate about it. So, in that sense, it’s counterintuitive and so…
Anyway, I want to invite you… I’m going to give you a copy of our Advanced Healing Package which is all our materials that help to reverse the condition from a dietary, exercise, meditation and supplementation point of view and also invite you to spend some time with us in our community forum, which, at your own discretion, you can either use or you might just want to use it like a supermarket. You might want to go in, get some information on a particular topic, like get a few grocery items, and then leave again. Other people go in and they spend hours and hours and hours in the supermarket and they read and read and read and read and they spend their days in there and I help both the brief shoppers and also the dwellers and so…
Clint: Okay? So, look, I’m going to hook you up with both those things because I want to try and help you however I can because you’ve been through so much already that you don’t need another day without the right information.
Let’s move across to my response or comments on a couple of other things. First of all, JIA, man, I mean, this is one heck of a thing to get when you are eight years old. So, I encourage you to watch one of our podcasts which went out and it was with a lady called Christine. She has a son called Cole and he was only five when he got diagnosed with JIA and then he was put on, through his mum, our program, which, as a footnote, is not designed for children. It’s designed for adults but under the right conditions, the right changes that I, at the moment, only release to parents upon request… it’s not… I don’t want parents grabbing our program and doing it for kids without my “Hey, these are the things I want you to know first.” But she followed all of those modifications, she followed the program with him and now she’s on Instagram and sharing all of his amazing progress that he’s made. So, he’s now on no drugs and he’s running around doing kickboxing and he’s in, basically, perfect condition.
So, I want to add a second footnote to that to say that you should not feel that your parents made any wrong choices with your situation or that they were naïve. I mean, even with the right information, the pressures on parents with children with JIA is astronomical because it’s not them and, as parents, we become hypersensitive and hyper over-caring to our children’s situation. We always err on the side of caution and so I find myself thinking these ways and can relate to parents with JIA who would be in an extrapolated version of this but when the doctor says, “You really need to get those immunizations because of this, this and this,” or, “You really should take antibiotics because of this, this and this.” And actually, thankfully, our daughter, who’s two and a half, has never had antibiotics, never needed to but you can feel yourself thinking, “You know what? It’s my child. I’ve just got to listen to the authorities.” And, look, that’s why they’re there and that’s great.
So, the pressure when there’s a child with JIA on the parents is so enormous that doing something that’s outside of the conventional treatment, even if it is only in parallel to the medical drug approach, seems risky and it… that’s… so, I just wanted to make that comment as well because I know we have listeners who have kids with JIA and it is a big challenge. It’s even bigger than when you’ve got it yourself.
John: Absolutely. No, absolutely. I really appreciate you bringing that point up too because all things considered, I mean, there is no shortage of love from both the doctors and the parents. That is so clear.
Clint: Yeah, absolutely. Everyone wants the absolute greatest outcome for the child and everyone’s doing their best. So, I feel that I can speak with you on more than just the… like on a spiritual level, let go of any… and I don’t think you have any of this but I think your parents did the absolutely greatest job that they could’ve done.
John: Well, I really appreciate that. I will definitely hug them.
Clint: Yeah, give them a hug. Now, I’m going to come to food right at the end. We’re going to talk about that last. Something that I would do and, again, listening to the way you described where you’re at right now, if you haven’t already done this or I might even be preaching to the converted, so to speak… something that I did… because I’m into personal development and I’m into self-improvement… I like that stuff. I like to kind of feel that I’m always learning and I’m always bettering myself so that I can be of more use to others. I’ve done a lot of different personal development courses. Everything from Anthony Robbins and John Demartini through to something that I’m about to talk about now that I’ve not talked about in years, let alone on a public forum like a podcast.
I did something called Discovering Your Inner Child and what it was is a… it was started on a Friday afternoon and it finished on a Sunday night and what we had to do for that entire period of time was to revisit what it was like as a child and to forgive parts of our childhood and it’s very emotional for me to talk about because the impact that that had on me was profound even though I had a nice upbringing. I didn’t have the upbringing that you described before. I didn’t have an upbringing that had physical pain and, in fact, I didn’t really have any emotional pain either. Our family unit was very tight and the love between my mum and dad, myself and my sister was strong by any kind of standards but when I went through this process, I found that there were parts of my childhood that were very traumatic at the time even though they might seem small.
For instance, one time, as a teenager, I would’ve only been about 12 or 13 but I had a cousin come from a big city and he was all into guns and stuff and he was years older than me and he wanted to go around and shoot things as you do because we grew up on a farm. We had 2500 acres. There’s things to shoot everywhere, right. Kangaroos were pests. He wants to try and shoot kangaroos and stuff and for me it’s like living on the farm. The appeal wasn’t there as much but he’s the big cousin. He wants… he’s exciting, you know? So, we went and did some things that I feel really remorseful for, which, again, don’t sound that big a deal but there were some old antique cars on the farm that my grandfather had kept for years because they were becoming collectors’ items and they didn’t have an engine, they were up on blocks with no wheels and he thought, “Let’s go shoot the windows of that thing. They’re just chassis. There’s nothing… that’s not even a car. It’s just chassis.”
So, we went about target practice and we shot all the windows in all of those cars and my father and my granddad, when they found out that we’d done that, it really upset them and I hadn’t upset my granddad that much. He was such a gentle man that… I don’t know. There was a part of that that never sat well with me and so when I went through this process, things like that and other things that I’d done and just little things but at the time were a big deal, I was able to find a way of loving myself today the way that we used to love ourselves when we were little and that was powerful for me… because one of the most profound exercises throughout the weekend, we had to take a picture of ourselves when we were a little guy and we had to look at the picture of ourselves and feel the innocence and love that we had in us when we were that age and then work out how to bring that into our body and love ourselves the same today as what we did back then.
John: Yeah, yeah.
Clint: And, so, for what it’s worth, I think that whilst you’re on this spiritual path and if you haven’t already done a lot of work on healing the inner child – the look in your eye tells me you have – I found it really, really powerful and for someone who’s been through so much as you have, I think there’s a lot of reward in doing that.
John: Right, yeah. I appreciate it all. Just being here with you and talking to somebody who’s actually had the shared inner experience… and while I also know there’s diversity within this group, no two experiences are exactly the same, I just have even a lot of relief here in contact with you. Yeah, in the last three years in particular, I’ve had, actually, scenes and memories come up that were long gone, specifically around early physical therapy, and that work, I think, is really part and parcel for me at this point just as much changing my relationship with food. Yeah, so…
Clint: Yeah, yeah.
John: I couldn’t agree any more.
Clint: Yeah, awesome, awesome. Well, let’s now talk about the food. The food’s actually one of the easiest things, actually. Now, the reason… yeah.
John: I like that.
Clint: Yeah, it’s easy. I mean, people make it sound like it’s extraordinarily complicated and, I guess, like the Rubik’s Cube is until you work out how to actually fix the Rubik’s Cube and get all the colors lined up, which I’ve now forgotten how to do and I don’t think I could do it again without the little cheat guide, but I used to be able to and it was impossible for me for the longest time and then someone gave me some tips. A bigger kid at school showed me, “Oh, no, you’ve got to do this and this and this.” And then I’m like, “Okay, now I know that.” It’s easy to put it together because you know the formula. You know the system.
So, our listeners have heard me talk about this topic a lot. The food side of things, I will save for conversations once you’ve come up to speed with all the materials that I’ll send you. I don’t need to explain stuff now in five minutes that took me a 200-page e-book and 8 hours of training videos to explain. You know what I mean? But let’s talk about motivating you to actually make changes to your diet so that you can embrace this next phase because the way I look at the actual condition of having the autoimmune disease, whether it be an original JIA and now just rheumatoid or whether it be one of the 80-odd other names that we give various autoimmune diseases, I believe all of it comes back to the gut. All of it reverts back to a problem where undigested proteins are getting into the bloodstream and they are being seen as an antigen (or an enemy) by the immune system and the body creates an antibody and attaches itself to the antigen and then that little complex floats around the blood and can get trapped in the capillaries of our joints in the case of arthritis, inflammatory arthritis. The process of actually stopping the eating… so, I don’t know if you’ve ever done a two-day juice fast or a… right, not many people have.
John: I’ve tried. I’ve tried in the past but I feel much more capable now.
Clint: Okay, okay.
Clint: So, what happens is about 95% of people with inflammatory arthritis, if they stop eating for two days, virtually all the pain is gone within two days and so that’s why the first two days of my program is a two-day cleanse because it’s kind of an epiphany when people get that experience because none of us have really skipped more than one meal throughout our life, normally. We get so hungry if we skip a meal that we even double up on the next meal that follows and so we never really go through life and separate ourselves from food for a period of time because we don’t need to. We always have food available at the store and our body tells us that we want to eat, so why would we ever do it?
But actually intervening and having the experience of not eating and how that translates to virtually zero pain and the only time it’s not zero is because maybe it takes a little longer for all the food to clear out through the intestines. So, after five, six, seven days, if people under a supervised condition remain on just a water fast or something, then it is a complete removal of all pain. The reason I said 95% is there is a 5% of people with whom the leaky gut is so significant that they’re also reacting to the proteins that are in the lining of the bacteria that are leaking from their intestines into their blood stream but that is only a small percentage of people and after two days, most people can tell if they’re in the 95% or the 5% and I explain in my program how to address each of those different scenarios.
Now, the second thing people think is, “Oh, it’s all too hard. I love eating this, that and the other and I’m going to be deprived,” and so forth. There’s actually… I guess there’s two things in there. First of all, nothing is harder than having inflammatory arthritis and having a challenge in your life of that degree and being on very heavy medications and being susceptible to picking up other contagious conditions because of having a suppressed immune system and feeling that you might have this for the rest of your life and that you’re not good enough or worthy, all these emotional things that come with that because we’re in a state of physical challenge. I think that’s much harder than reaching across and eating some sweet potato or a bean burrito, right?
So, for me, it’s simple. The feeling of going deprived, we have addressed as much as we possibly can by putting together foods that are not only nutritious but delicious. So, in the first period of time, it is an elimination diet. That’s not designed to be delicious. It’s designed to be nutritious and to be healing but with time, you can’t believe how good an orange tastes when you haven’t had fruit for a couple of weeks. You can’t believe how good it is to taste papaya or mango. I mean, they just burst with flavor in your mouth.
Once you’ve eliminated the body’s current desires to eat junk food or high fat foods and all the foods that have not been supporting you in your efforts to get well, as your gut bacteria receive different foods from the foods that you put into your body, they change in their portfolio because if you’ve got 10 different animals and only 3 of them live off food A and 3 live off food B and you only eat food A, all the food B eaters are going to die and that’s what happens. So, then you have only the guys who live off the food that you feed them or, not only, they dominate and these dominating bacteria group are the ones that support you and help make good decisions in terms of sending signals to your brain and creating desires through your taste buds and influencing your moods and everything.
So, they’re the most common objections. It’s the thinking of not going to get all your nutrients and protein and all that. That’s all hogwash. It’s all there and, in fact, in excess. There’s no depravity and it’s not as hard as having the condition.
John: Wow, okay. Yeah. This is… since I only know having the condition, I look forward to being able to first-hand agree with you.
Clint: Yeah. And when I say… so, the goal should be… if it were me, right? And this is the whole purpose of this chat, other than having a great time chatting with you. I think that if I was as in your situation, given that you’ve been through this for many, many years and you’re a veteran of having pain and you know all about it, I think that what I would do is I would look at the stuff that I send you, have a think about it, look at the Recipe Book for Optimal Health that I send… that comes as part of the Advanced Package. Have a look at that and you might like to transition slowly across from your current food choices and you might like to say, “Well, over the next two months, I’m going to introduce some of these optimal health recipes into my evening meals, say, two or three times a week and I’m going to get used to how these make me feel and find ones that I enjoy.”
And then after a month or two, you might find that each of your evening meals are plant-based meals but you haven’t yet done the elimination diet, right? You’re still just eating what I call at the end of the program. The optimal health guide is kind of the maintenance stage. That’s where you go to when you’ve reintroduced a ton of foods and you’re cruising. That’s, for instance, how I eat right now, all the foods in the optimal health, we have all eaten as our family over the last few years. They’re things that we have actually eaten and enjoyed. So, that could be one way, rather than the kind of hit the brick wall suddenly in terms of the rapid change between your current way and the way that I recommend.
And so, doing that as well doesn’t disrupt the family eating and plans too much. It’s kind of like, “Oh, we’re going to change one meal this week, are we?” And everyone can um and ah about that and they’re like, “Oh, we don’t mind this,” and then, “Oh, I slept better last night. Well, okay. Well, maybe we’ll do that again, the same meal next Monday. Why don’t we try another one of these recipes?” Over a couple of months, it can really… even those meals themselves can make you notice some differences and maybe get you on board completely to then take it to the next level and do the elimination phase and then the reintroduction process because it’s when you’re getting to that that you’ll see big changes.
John: Okay. Yeah, yeah.
Clint: And if you want to ever have the discussion around lowering Enbrel doses, then that’s something we can talk about offline here because that’s a longer conversation and it would depend on what your current levels of sed rate and ESR, of course, and C-reactive protein and how your current symptoms are and how your energy levels are and all sorts of things, so obviously that’s a conversation that you tie in with your rheumatologist and there’s hurdles to overcome there with regards to not wanting to go down on medication if you’ve failed other drugs so that you need to know that there’s backup plans. There’s a whole lot to think about.
Clint: But, yeah, I think you’re at a nice sort of fork in the road here where, yeah, it’s a good time to start to look at what’s next and how you can do more now that you have access to all this information and now you’re ready.
John: Yeah. Yeah, absolutely. Wow.
Clint: Yeah, man.
John: Yeah, I think words don’t do justice to what I’m feeling, again, being connected to you. It’s been a long time out here.
John: And I’m beyond grateful for how connected you feel to serving other people and the rest of us that are still active in the condition but I’m also blown away at your own personal ability to “figure it out.” It’s almost like figuring your way out of just a massive hall of mirrors and for me, in some ways, I feel like I’m three decades in and, I mean, it is just… there are no words for what I can say about my admiration and bewilderment at the work you’ve done just to get space from your own experience and to be able to make your body and to have the presence to stick with it and experiment. It’s just wow. Wow.
Clint: Oh, thanks, man.
John: I’m just feeling a whole lot.
Clint: Yeah, that’s lovely. Those words mean a lot to me because it is exactly like that and to stick with your metaphor of the hall of mirrors, man, the number of times I must’ve smashed into a mirror and bled from my forehead, it would’ve been hundreds.
I mean, Melissa and I were just talking the other day, my wife. We used to… we actually made some of our… that’s right. I’d forgotten this. I was going to write an email out to my database and tell them another story because I like keeping everyone up to date when I recall new things and share new things and some of the greatest discoveries that we made were through reading books. I just love to consume content and books were great for us when we were on… what we reflect upon as holidays but they’re actually working holidays for us. So, I used to go on cruise ships all the time as an entertainer. It was the way that I could help support my family and Melissa would sometimes come with me and on a cruise ship as a performer, you only work once or twice out of nine days and the rest of the time you’re on the ship like a passenger with nothing to do.
And so, we used to use that vast amount of time and just read book after book and we would read it out loud to each other and sometimes we would read things out and I’d be reading from the page and it was like I was seeing the light: “That’s what we need to be doing,” and, “Oh, we’ve been doing that wrong.” And we would get some of those experiences from… almost every book that we would read, we would find a page where there’d be something like that or there’d be… I would sometimes buy a book just because it had one line item in the menu when you looked at “View inside this book” on Amazon. One line item on one thing, maybe one supplement that I wanted to know about and I would spend all my money on trying to get well because it was just… just became the most, single most important thing to me ever and it is so much harder when you can’t commit the amount of time that I committed to it and because I had to commit… I committed every living moment to it when I wasn’t performing on stage and I used to only… I still only gig once or twice a week, right? Okay. So, most of my work, 75% of my work, is in Sydney here where we live and so I’m within an hour or about an hour and a half of any job that I need to do and I can sometimes go and knock out half an hour and then come home again and I’m done. I have been doing this for 16 years and last 10 years… no, last 10 or 12 years as a corporate entertainer so that I get corporate wage from doing 30 minutes a week. Do you know what I mean? That’s good.
John: Yeah, yeah. Congratulations.
Clint: Oh, thanks, man. Because of that, it allowed us to have all this time and time was just what I just needed so much to not just do the research but also to experiment with my -foods – and, again, I want to reiterate to people, we haven’t touched upon it in this episode – but to exercise and I used to have to go to Bikram yoga every single day of my life just so that I could walk. If I didn’t go, I could barely walk and so I would skip… if I skipped one day, that next day I should have been on crutches and if I had not gone another day, I wouldn’t have been able to walk and so, I had to go just to walk. So, the level of commitment is, yeah, is nothing short of phenomenal and it’s nice to… for you to be able to see that as well because every now and then… like on… every now and then, there are some free support groups that exist online where people all get together and they talk about their illnesses and they talk about the medications they’re on and it generally turns into everyone just complaining and whinging and stuff, right, online.
Clint: A lot of these exist and sometimes I’ll just… someone will bring to my attention some nasty comments or something that are posted on one of these forums and I’ll look at that and it’s like, “Oh, he mustn’t have even had rheumatoid arthritis or something,” and it’s just… oh, man. These things are unsettling, even from strangers and people who don’t know. So, it’s nice to hear nice things, which, of course, I do get a lot but I feel connected with you and coming from you, it’s really nice.
John: Well, happy to help you, man.
John: Absolutely. Yeah, I would like to continue talking to you off the record. There’s a lot of else… this has brought me very deep into many, many levels that probably aren’t completely relevant just to somebody maybe just beginning this or who was diagnosed this year or something like that and also I feel like my life’s work is building on this experience with which this is a part. I’m very interested in not only chronic illness in the body but chronic illness in all systems at all levels, so the idea of a body or even a society attacking itself, and I have a bunch of ideas that I’d like to parlay and take this experience. Just like you, I think it’s going somewhere.
Clint: Yeah, fantastic. Yep.
John: And so yeah.
Clint: Good place to start. A lot of our listeners like going on Instagram and following a lot of our podcast guests. I think that if you were to set up some kind of social media account or if you have a website, if you have some kind of GoFundMe or some kind of initiative that people can access from anywhere in the world via the internet and you put that in place before we go live on this episode, then I’m very, very happy to drive traffic to that because you’re very much like-minded with our listeners and I’m sure a lot of people would be keen to see what you’ve got going on there and I am as well.
John: Happily. It’s actually in the process. I do have a domain but it’s only a blog and it’s been inactive for a year but the last 18 months or so of my life have been very, very interesting, lots of world travel, lots of deep exploration into just various things, rescuing myself in a way, amending to myself and to my family and there’s one blog post in particular that I think actually it would be interesting maybe for somebody in this experience that I can certainly share – and I think I wrote it down on the form beforehand – called Growing Up in Black and White.
John: And yeah. Yeah, it definitely ties… it talks a lot about my inner world and the outer world and how I was making sense of it all growing up in Mississippi and with a chronic illness.
Clint: Right, right, yeah. All right. Well, make sure we get the right URL for that – John’s Blog Here – and I’ll add it to the show notes of this podcast. So, we planned to do about 20 minutes and we’ve taken it to a whole new level.
Clint: But I’m sure listeners are not upset by that because I’ve certainly got a lot out of chatting with you and I hope that other people have as well hearing what your story has been and also what you’re going to be up to in the future.
So, thanks a lot, John, and we’ll be in touch offline.
John: Wow. Thank you for that. I really appreciate it.
Clint: Okay, man. I’ll talk to you again soon.
John: All right.
Clint: Bye bye.
John: Thanks. Bye.