Conversations on Cancer is a 6-part mini-series on the Relationship Matters podcast focusing on finding Right Relationship with life-threatening illness. Across the 6 episodes, Faith Fuller and Katie Churchman talk with survivors & caregivers from around the world about their relationship with life-threatening illness. In this epsiode, Faith and Katie are talking with Mish Middleman about right relationship with prostate cancer and male identity.
Mish Middelmann was the founding CEO of Praxis Computing, a hi-tech start-up in the 1990s, and then became a systems coach, brought ORSC to Africa in 2012 and is now a part of the CRR Global faculty, both leading ORSC courses and supervising certification students worldwide. Mish was an apparently very fit and healthy 61-year-old when he was lucky enough to be diagnosed with prostate cancer just before it spread beyond his prostate gland. After being bewildered by the complete absence of a roadmap for recovery from the side effects of his treatment, he created www.recoveringman.net, where he, his partner and many other prostate cancer survivors share their stories very frankly and intimately, as they unfold. This has also led to a global Recovering Men support group – a space of live conversation, vulnerable strength and openness.
KC – Katie Churchman
FF – Faith Fuller
MM - Mish Middelmann
[Musical intro 00:00 – 02:51]
FF – Welcome to Conversations on Cancer. My name is Faith Fuller and I’m one of the founders of CRR Global, along with Marita Frijon. The following is a season of podcasts with different cancer survivors about creating right relationship with a life threatening illness. We want to acknowledge right off the bat that this topic can naturally bring up a wide variety of feelings for all of us. For this reason we want to give a trigger warning about the content of these podcasts before you continue. We’re going to be presenting interviews with cancer survivors or their caretakers and each podcast is a very personal story about one journey with a life threatening illness. Everyone’s story is different and the speaker’s experience may be very dissimilar to any health journey of your own. In the spirit of deep democracy, please honor this person’s experience and also honor your own. Every voice is one voice of the system. Honor what right relationship with illness means to you. Medical disclaimer: these podcasts are meant to share the personal stories of cancer survivors. The stories are not intended to provide medical advice of any kind. Any questions regarding a user’s personal medical condition or their medical care should be directed to their medical care physician. Thank you.
KC – In this episode Faith Fuller and I talk with Mish Middelmann about prostate cancer and male identity. Mish was the founding CEO of Praxis Computing, a hi-tech start-up in the 1990s, and then became a systems coach, brought ORSC to Africa in 2012 and is now a part of the CRR Global faculty, both leading ORSC courses and supervising certification students worldwide. Mish was an apparently very fit and healthy 61-year-old when he was lucky enough to be diagnosed with prostate cancer just before it spread beyond his prostate gland. After being bewildered by the complete absence of a roadmap for recovery from the side effects of his treatment, he created www.recoveringman.net, where he, his partner and many other prostate cancer survivors share their stories very frankly and intimately, as they unfold. This has also led to a global Recovering Men support group – a space of live conversation, vulnerable strength and openness. My name is Katie Churchman and you’re listening to Conversations on Cancer.
KC – Mish, Faith, welcome to the Relationship Matters podcast. Faith, of course, welcome back, and Mish, welcome to this very special miniseries we’re hosting around conversations on cancer.
FF – Good to be here, thanks.
MM – Thank you.
KC – So, Mish, I wonder if you could start by telling us about your journey with cancer?
MM – So, just about, a little bit more than two years ago I was feeling completely fit and healthy and living what I thought was a healthy life and went to see a GP doctor about an unrelated matter and on a hunch she said when did you last have your prostate checked? I said oh no, I do that regularly, since I was 50 I have prostate scanning, she said well when was the last time? And I was like hum, not sure that but actually it might be a bit more than a year. Long story short, on a hunch she really pushed me to have a test there and then and she felt it and she said it doesn’t feel right and I had the blood tests and that’s it, it’s elevated but not much. The blood tests alone would not have been enough. So I went and talked to the urologist and scanned and all along believing this could have been me, but by December 2019 I knew I had prostate cancer and I had my prostate removed in February 2020.
KC – So that must have been quite a shock to the system I imagine Mish?
MM – It was. It was, like I was so sort of optimistic that I just sort of didn’t really believe all the warnings I was given. You know, the doctor said well we’ve got a good chance at catching the cancer, we’re in time, and you’ve got a good chance of having urine control and erectile dysfunction issues and I kind of went well I’ll be the lucky ones on the other side of the statistics, and honestly, so far, I have been lucky in terms of the cancer and two years later I still have the reading on that test that suggests the cancer’s undetectable. It can come back any time but it isn’t active at the moment. But, I have had erectile dysfunction for most of the last two years and that I didn’t expect. And that was very upsetting.
FF – I can imagine that’s a whole journey. I would love it if you could talk about what that journey was like.
MM – I mean it’s… first of all just to, before I get to the erection which you know, for me that’s the big story, right?
FF – Yeah.
MM – Actually the prostate is a bigger story than most men realize, most people realize. It’s one of the few bits of the body which is uniquely male. It’s far more important than we think. It’s tiny, it’s kind of like the DJ at a party. When the party’s going you don’t really notice the DJ, but if the DJ stops everyone turns around and says where is the DJ, and that was my experience with my prostate, it was just there, I didn’t particularly know about it, creates some pleasurable sensations but it wasn’t such a big deal. But when it was gone, since it’s been gone it’s not just the sexual functions which we’ll come back to, but also like in my yoga, the prostate is really at the root of the chakras. Everything feels different when it’s not there and the energy flow up and down my spine feels different since I haven’t got a prostate. It’s quite a big deal. It’s quite the core of my male body I think. And now there’s emptiness at the core and you know, maybe that’s a good thing having emptiness at the core.
FF – Could you say more about that? That’s fascinating to me, emptiness at the core.
MM – You know, I do yoga every morning and I feel this energy flow up my spine, I was trained in the kundalini yoga which is very much about energy flow. It starts sort of in the base, the moola bandha, where you tighten up all your anal, genital, naval muscles, you would think they’re all still there, it’ll be fine, but the honest truth is, and I can’t find anyone else who’ll talk to me about this, the honest truth is something at the center is missing. And after two years of it beginning to flow again fairly well, it doesn’t have that same sort of source, it feels like it sort of, maybe that’s a good thing, it just feel like it’s gathering the energy from the universe and channeling it up and it foes back up through the skull. But it feels, it feels bassy.
FF – You know, it’s interesting, if I tie in with that a little bit, you know, again, I had all my lady bits taken out, you know, when I got endometrial cancer, but I wouldn’t say, it’s a different thing, it’s not sort of at that root chakra place you were talking about, but I have been aware that things are just moving, that space needs to be filled. You know, things move around to find wherever they need to be, so there is a little bit of a sense of everybody being off balance a bit. As everything finds a new spot in the places that were taken out, the spaces.
MM – And coming back to the question you asked earlier that I may have appeared to dodge, about the erections, I would say that actually back in December 2019, the sort of mantra that has got me through all of this came to me then, before I had even had the treatment which was my sexuality is more than my erections and my libido is more than my sexuality. My manhood is more than my libido.
FF – Beautiful.
MM – At the time that was just like sound like a nice idea, I’d no idea how difficult it was actually going to be. And really having erections take away, it’s such a fundamental thing and it’s made me so much more appreciate this male body of mine, it’s kind of eagerness, when it was all working it’s a bit irritating when you’re young and it’s embarrassing because the eagerness is so obvious, you know, in men compared to women, it kind of sticks out all over the place. But man, do I miss it when it isn’t there. And it’s also, there’s no practical reason really why it needs to be there to make love with anybody, plenty of people do make love with each other and there’s no penises or erections to be seen, but when you’ve had it going for 50 years it’s also in the partnership, in a heterosexual partnership, well any partnership, if the me in the partnership has had erections for 50 years and then they suddenly go away, it freaks everyone out because also there’s no signal. And my partner found this, that like I was always obvious, right? You can tell if a man’s turned on.
FF – Yeah!
MM – It’s very easy to tell. And suddenly I’d be telling her that I’m turned on and she’d be looking at me and going I don’t believe you. And so for both of us it was rewiring ourselves to be loving and be sexual without this sort of convenient thing that we used to, you know, the convenient sex toy if you like. But it isn’t just a sex toy, it’s a part of my body. And it’s a huge loss and it feels odd and it feels lonely and scary and it feels like something really important about me has gone. The thing about prostate cancer care, unlike breast cancer care, is that it’s minimal. It’s like arriving at JFK, you know, you just get dished out onto the street. Have this thing cut out and now go home, and I asked the doctor what about my erections and he said wait 6-24 months, if they come back in that time you’re lucky, and if they don’t they probably won’t – that was it.
FF – That’s a two year wait, too.
MM – All they really prescribe is the little blue pill or one of those variants, and that didn’t work for me and it messed with my head so I had to research. So, long story short, lots of research on what to do and found lots of ways to help myself, take care of myself, and the first time I actually managed to with help of a one of these penile rehab things which I can tell you about if you’re interested, they’re all on my blog. With the help of one of these, when I first got an erection, like not really an actual one, it was like meeting an old friend. It was so cool. I was like so pleased to see you again, my buddy, you’ve been my friend and a source of joy and entertainment for 50 years and you’re back, ah, it’s so good to see you.
FF – That’s really touching, Mish, it really is.
MM - And it’s, for the last, for the next 18 months it’s been a very illusive friend, most of the time it’s been absent. But it’s like one of those friends during the pandemic, you’ll occasionally get to see them on zoom or occasionally they come and visit you. And now two years later it’s a little more like what would I say my chances are if there was any particular given sexual moment, probably about a 50% chance something might happen there, and other times it just won’t. It’s like ah…
FF – Oh well!
KC – I so appreciate you sharing this, Mish, because it’s such an important part of manhood I realize and yet not many people are talking about it, and yet when it’s suddenly gone it must be such a shock and then to feel, to your point, so alone in that, to not know who else is feeling that. Have you felt like the conversation itself has been healing?
MM – It has. I looked around, I complained that there’s no integrated care system for prostate cancer which there isn’t, there’s about two places in the whole world that offer that, none of them near me. And then I realized I’ve gotta do something so I did the research, I started getting the help from a wide range of care givers and then I realized I also need to talk to people and I have a wonderfully supportive partner who’s really made a huge difference, but then I realized I need to talk to other men. And again, couldn’t, you know, as somebody said, when you get a bunch of men together and something’s broken we all become mechanics. So a lot of the men’s care groups are very mechanical, or else they’re all about money, about insurance, like does your insurance cover this procedure? But slowly over a year I found somewhere people are actually talking about how they feel and eventually I started one up at a global group, now, that meets on Zoom once a month and really just sits in a circle and talks about what it’s like. So, what I’m sharing with you I’ve practiced with my brother survivors around the world! And that has been incredibly helpful, it really helps with the whole thing because it’s all about adapting to a new body, as you would know Faye. It’s just the body is different, I’m still here, how do I pick up and start my life with this new body?
FF – You know, I’m struck as you talk just a little bit that, and I have this experience but I know not everybody has, it sounds like you could move into curiosity about the new body. Did you go through depression? Any need to work through I’m not who I was or… I don’t know, I’m making it up.
MM – I mean what I remember particularly for the first six months, maybe nine months, was mostly being quite optimistic in the day times and mostly waking up in the middle of the night feeling terrified. And just not able to sleep and I got a wonderful healing practice from my coach and it comes from your part of the world, Faith, as in Vancouver island, and just a healing meditation breathing from my one hand to my other hand through the affected parts of my body. And I did that every night for about nine months, and I still do it when I wake up with that kind of thing so yes, I found it scary and depressing and I do believe one of my great blessings is that compared to some people I was less effected by that. I also see, you know, I talk to a lot of men about this because of my blog and support group. There are men who are deeply angry that whether they weren’t told or at least they don’t remember being told what the side effects would be, and they feel like somebody butchered me and took away my manhood. And people are angry and that’s my big sort of healing question, what enables people in general and in this case man in particular to adapt to our new bodies and to find, because the thing that we most of us complain about the most is the erectile dysfunction but the English word for what we want to do is making love. So making, making, I’m good at making things. Making doesn’t involve just having things come to you as a gift. Making involves making some kind of an effort and I want to say that I have myself and many other men that I’ve met, have found that our gender identity’s become more fluid. So, one of the most extreme cases, I know of a man who just said I really enjoyed not having an erection because my genitals felt more like a vulva and it feels really nice. And it’s really irritating having that thing sticking out again now. You know. For me it wasn’t so much that, because as I say, I do miss my friend the erection, but I’ve certainly found myself sensing my female body more. I’ve found other parts of my body much more sensitive that were not previously so sensitive, and I’ve found a sort of sexual attitude that I previously associated more with female people. It doesn’t mean that all women are like that but there’s a…. in common language people talk about softness as being more of a feminine characteristic. I don’t think it’s exclusive to any gender but I have become softer not just between my legs, and more fluid. So that’s all been sort of shaken up by the experience of not having this sort of obvious linear and very eager male body.
FF – Yeah. You know, I was thinking as you spoke I wish we could have more conversations about this just because, I’m not a typical situation in this because you know, I’m already 70. So I wouldn’t say that a lot of my identity is invested in my sexuality. Younger women, you know, it certainly can be, but it’s more diffused and I think for a lot of women when I talk to them about endometrial cancer, when they’ve had a hysterectomy, it’s more about who am I if I’m not a mother. If I’m not going to have babies. I think that is, I’m guessing, in part a very deep aspect of being a woman, sexuality too but it’s different I think. And I wonder whether that comes up with me, you know, fatherhood issues?
MM – Mmm. I mean, prostate cancer is quite rare in men under 40 so perhaps that’s why I haven’t heard men so much talk about fathering. Everything else that you said applies to men as well, and I do every now and again think of it but you know, I’ve got grown children so my fathering energies are deeply satisfied. So for me personally it hasn’t come up and I think just your age point is important because these things are being diagnosed earlier. It’s recommended that Black men are scanned for prostate cancer from the age of 40 and other men from the age of 50, but I still felt it a little bit that there was a little bit of a hangover of like oh you’re an old man, all the stuff about fathering and sex doesn’t really matter for you, does it? And I’m part of the new generation for whom it actually does matter. And I keep telling the doctors just wait, you’re going to get much more of that in the next 20 years than you’ve had in the last 20 years.
FF – It’s almost like agism is attached a bit.
MM – I think so. I think it is and I think it’s a problem in the medical system that sort of has a particular agist view. On the other hand, just to turn it around and make it more personal, what I think this whole experience needs is practice with age. And more fundamentally practice with change. I don’t know if you’ve been saying this but I’ve been saying that the number one metaskill for this decade at least, if not the century, is flexibility and adaptability.
FF – Yes.
MM – For me this was a gift to say start adapting in the most fundamental way to your own body and that might help to adapting to pandemics, that might help to adapting to aging and the ending of the body – that’s the gift of this for me. Is to still be compos mentis and still be fit and healthy, and to have key parts of my body just either malfunctioning or taken away from me.
KC – Yeah, I was just thinking about the idea of right relationship and it’s easy to hold that in terms of right relationship with nice things like love but it’s harder to have right relationship with things like this, and I think that that sounds like what you were leaning into, using this as the gift and what might it teach me.
MM – Yeah, there’s so many layers of relationship. I mean I think the very first one that Faith alluded too was relationship with the cancer, you know, and it was very important for me to first of all acknowledge that cancer is quite a random thing and it’s not my fault. Then to go one step further in the relationship and say I’m still not powerless, there are things I can do to help myself. But it’s not like because I didn’t do the right things therefore it’s my fault. So that, and I mean, the relationship with cancer is enormously complex and I don’t want to pretend that my brush with cancer is as deep as many people’s deeply painful and fatal experiences with cancer.
FF – Yeah. Did you think about Death at all Mish?
MM – You know, I do that anyway so… so yeah, I don’t think it amped that up particularly, it was more the disabilities than the death.
FF – Yeah, interesting.
MM - The next right relationship perhaps we’ve also been talking about is with self and this concept that when I started my blog I talked about my road map for recovering my manhood and a number of people said to me what’s this manhood thing? And I wrote back in December 2019, it’s really the end of the road in the world for a particular kind of manhood that sparks on command and control and toughness and being in control and everything being fixable, and so I think when I conceived of this as a recovery of manhood it wasn’t, it was a transformative recovery. That’s what I see as the right relationship and I read a wonderful book by Arthur Frank called The Wounded Storytellerwhere he contrasts stories of restoration with stories of transformation and I think, at first I thought I’d just want to get it back and I quickly realized I couldn’t have it back and that is a gift that I want to share with others, that you can’t have it back but you can go forward into something new.
FF – That’s so interesting. I just want to say that one of the images, and actually I was given an image after I had a bad car accident and had some brain damage, and the image was that somebody is standing at the bus stop waiting for the old bus to come by and you’re gonna get back on your how it’s been bus and you’ll stand at that bus stop for quite a longtime hoping for a bus to come along, you know, of how it was. And at some point you begin to realize this bus ‘aint coming. You know, but it takes a while standing at the bus stop wanting it to be the way that it was before you can move on.
MM – I agree. And I would say for me that was at least six months. And some things coming back, I mean the surgery’s miraculous, the surgery I had. So it’s the basic sort of gross motor functions, running, walking, eating, sleeping, came back amazingly fast. And I was kind of like well where are the other things, where are the other bits on the bus that I want? And it took quite a while to realize, I love your metaphor – that bus isn’t coming. But maybe there’s someone with a bicycle who can pop you on their carrier, maybe you can walk down the road or, you know, there’s other ways of travelling.
FF – Absolutely. And you have to give up grieving the old way before you can move onto the new, you know, and I think, what about grief? Does that resonate for you?
MM – Well, where that comes up for me is, you know, we often talk about how do you help a system to change and we often say well, help, we talk about the primaries, how things are now and the secondary is what’s emerging and how do you find that thing which is emerging, and we often say under the primary. And that, for me, broadly, grief is part of the primary I had to honor, but, and I think especially for men, you know, we’re not optimized for expressing our feelings or even noticing our feelings, it’s just kind of, part of that ego body that I was born with, someway it didn’t help me to learn much about feelings. So, for me, the pathway to finding this new bus was very much to find ways to acknowledge those feelings which were grief, they were anger, they were loss, they were a lot for me about confusion. And a sort of, I’m going to say floppiness but that may be after the fact because of the physical manifestation of that. You know, there’s something about my experience up till then that had quite a firmness and that just, that kind of left me in a way. And it was like well what’s that going to be like? And, yes, definitely the constant like well is this coming back? And every time I go for my next blood test it’s like well, what’s that result going to be? And imagining what it’s going to be like if and when it comes back, the cancer returning. And a good friend of mine in Tasmania just had that last week, you know, we’ve been on the same journey together and suddenly his has taken a different turn. It’s terrifying.
FF – And powerful. Yeah, powerful and terrifying, I can imagine. You know, I think there are have been times where I have what I would call rounding out. In other words, where I’ve been dumped into some deep, painful place but I haven’t been entirely clear what it’s about. It’s almost like there are too many different feelings and I blow a circuit breaker and I go into a realm of just needing to be with myself and quiet to allow the emergence of different feelings, you know? So I can identify with sometimes there are so many different things happening with a diagnosis that you can’t, it takes a while to sort them out, what is what.
MM – And thanks for sharing that Faith because I think what happened to me was similar but perhaps a little bit sort of different from what you said in the sense that I think what I needed was to really slow down. So where you experienced this realming out, what I experienced was letting go of my need to be in control and to have my shit together.
FF – I like your rephrasing, much better.
MM - Just, I’ve been working less, you know, and I’ve been saying this for years, I mean I sold my company 15 years ago or something and said I was retiring then but I kept getting busy again. What this has helped me to do is keep that promise much and to just not work all the time and not know… the not knowing about my cancer and my sexual health kind of helps me to not know about a lot of other things. I actually like myself better that way and also think I’m better set up for life in the 21stcentury with the not knowing.
FF – Well, it strikes me that I got a, there are indeed privileges associated with cancer, at least in my experience, and one of them is I had permission, everybody knew I was in chemo so people didn’t expect that I’d show up on a… you know, a week after chemo was my week, I mean I felt like crap, but I was down, you know what I mean? And so in a way as I completed chemo I had a sense of who am I now? I have to do another set of evaluations in terms of how much do I wanna work and the contributor in me feels like I may not have value if I don’t or I’m having to have that struggle which, of course, I didn’t anticipate. We should just be happy right, you’ve come through treatment and yeah, damn straight, I am. But there’s also the complexities of who am I now when you didn’t, all you had to think about was getting through the next chemo.
MM – Right. And that, what you just described, who am I now and the sort of open space, that to me is the bigger, you know, we’re facing the biggest open space of all when we die, so it’s like we’re all getting to practice with that.
FF – Yeah.
KC – There’s one emotion in particular Linda mentioned around shame, I wonder if shame was one of those emotions which hit you in that mix of things?
MM – I mean I would say I was very lucky with that, partly that I’ve always been a, maybe a bit of an exhibitionist so talked a bit more than most people about these things. The second thing I really want to acknowledge is having a loving partner. First of all, was completely accepting of me as I am now, and my new body, second of all was willing to be super inventive about, like I said, finding ways of making love with the new body that we found with us. But I think more deeply, this is, so I can’t comment on what other people said, but just as my experience as a man, there’s something about the experience of being a man which is of having a body that’s quite simple. And when it got unsimple I was pretty freaked out, so shame wasn’t perhaps the top emotion but I was pretty freaked out. What my wife was able to say was you know what? You’re beginning to have experience of what it’s like being a female in this world. She said I have been, have had people poking about inside me ever since I was young, whether it’s a boyfriend or a doctor or a nurse or somebody taking a pap smear. And she said you think some of these devices used for penile rehab are shameful or embarrassing and awkward, she reminded me that we used to use a diaphragm for birth control when we were young and that thing is just like these weird penile, erectile pump things that make a mess all over the place and are ungainly and awkward and messy. And so want to just acknowledge that for me as a man I’ve learnt so much from one particular woman but I think she taps into the experience of women in general with just life with a body that isn’t quite so sort of me entirely which I think my experience of my male body had been up until now.
FF – I was just going to check with you about if there were any, and there might be or there might not be, any particular ORSC tools that you used, your skills or approaches that you thought was helpful for the journey?
MM – You know, I think I’ve mentioned the main ones which have been the most important which is about honoring the primary, about the metaskills of flexibility and adaptability…
FF – Yeah.
MM - … and about, I don’t think this came from ORSC but ORSC simply amped it up for me, that space of the end of the road for being in control. That was a really deep understanding. But I think the other place it’s showing up is I do feel very blessed as a man to have both that sort of, have had various opportunities to develop a bit more tuning into my feelings but also incredibly loving support at home and access to community worldwide. And what I want to say there is that I’ve really put a lot of effort into building community worldwide amongst men, and there I really use my ORSC skills a lot. Because, as I said, what we are sort of taught as we grow up is that we should fix things. And when it’s unfixable it’s a little difficult and we sort of think we should download information but what I’ve been learning is a lot of information is not acquired by download, a lot of information is downloaded by sharing and chatting and that is not conventionally available to men. I learnt about that through the Man Kind project about three years ago, but then I learnt a whole next set of skills from ORSC about 10 years ago that have enabled me to run these local support groups where men do just sit in a circle and just chat. And it might be about oh, what’s the latest cock ring you’ve found that helps you get it up when you can’t get an erection? Or it might be how are you talking to your partner, male or female, about your sexual ability? How are you finding it dating when you know that hidden underneath your clothes is a non-standard body. What I’m seeing is that where those conversations are free of advice and free of experts, actually, even though the default is bring us an expert, if they’re free of experts and advice there is an opportunity for peer conversation where in fact far more information materializes and informants actually useful. Particularly for that bigger transformation of expressing our anger and our pain and our shame and our fear and finding something on the other side of that.
FF – I’m struck as you say that, I have also experienced in the infusion room, getting the chemo with other people that are getting chemo, curious intimacy. You have permission to talk about things that people don’t talk about generally. So I’m wondering whether it’s a feeling, is that a feeling of I do have something, a gateway into intimacy to talking about these things?
MM – I think so. I mean I’ve been experimenting with things because people, Faith I’m sure you get the same thing, people ask how are you and they want you to say I’m fine. I typically say well I’m fine but I’m still having trouble with erectile dysfunction you know, and that’s, you aren’t allowed to say that but it’s easier to say when it’s because of surgery and not just because of other natural processes.
FF – I could imagine that would clear the room!
MM – But what I certainly find in prostate cancer survivors circles is we can have this conversation. Every time a new man joins they say I’m astonished by how open everybody is, but actually it’s, actually it’s just like a couple of guys sitting at the bar and saying hey, can you pass me the peanuts at the other end of the bar there? And you’re just passing the peanuts. It just happens that this bowl of peanuts is like a sex cock ring or a story about what you said to the person you were dating last weekend. But suddenly the adaptability of human beings comes back to us when we talk, when we’re in community, and that, as you both know so well, takes on a lot of work from the emotional field, a lot of the right metaskills to create the right sort of field. For men to just do what’s naturally natural but most of us, sort of, I think that’s where the shame comes back Katie, that you can see the shame climbing over the wall from the neighboring garden, like I need to keep this secret because otherwise the shame’s going to come, people are going to find that I can’t get it up. People are going to find out that I’m wearing nappies. People are going to find out there’s that. The shame is wanting to grab it and I don’t think there’s much available to us other than community to help to push that wall of shame back.
FF – I think that’s beautifully said.
KC – Yeah, and I wonder then, have you found this to be a gateway into relationship at a deeper level with, I guess, a community you otherwise wouldn’t have maybe known.
MM – Definitely. I mean I’ve met the most fascinating people because you know anybody who was born with a prostate can get prostate cancer. So I’ve met people of all genders and sexual orientations in all parts of the world who have had prostate cancer and there is this connection and there is this ability to cut through the crap, basically, and get down to what really matters. And now I find I use it outside that community, I mean, it would make your hair curl, depending on how long your hair is – yours is probably a little short to curl right now Faith – it would make your hair curl if you knew what I was talking about to a co-leader on the last ORSC course, during a break.
FF – You have to tell us now!
KC – Yeah, you have to know, you can’t…
MM – Well it was a man and he was interested to know about my experiences of a vacuum erectile device and cock rings so we talked about it! You know, what’s wrong with that? How did you polish your nails, where did you get your hair done, what kind of shoes are you wearing, where did you buy your watch your wearing – it’s all just bodily functions as my sister in law says. It’s just a natural bodily function and why shouldn’t we talk about it? And particularly if we have the same kind of bodies, why shouldn’t we talk about how’s your body working and how’s my body working and what are we learning about our bodies? So it feels like it’s lowered, you know, it has the potential to put up those walls of shame but it has the potential to knock them down.
FF – Absolutely.
MM – And I’m, my big research interest is what enables people to shift into the positive quadrant and what locks people into the shame and anger quadrant, because I meet people like that and when I chat to them they’re usually able to look at it but they then go back into the anger quadrant and all I can say is there’s lots to be angry about so I’ll certainly give them that, there’s lots to be angry about.
FF – Yes. Well what I’m appreciating Mish is there’s a way you’re helping men to cross edges around their illness, to make new discoveries on the secondary side and also just to how to be with where they are when they’re in primary anger or shame or whatever it might be, but that the story doesn’t end there. There is an opportunity after time of grief or whatever to move on, to find out what’s in the new land. Did I get that right?
MM – You’ve got that absolutely right. I am, it’s very and it’s drawing me further into that work because it is such an opportunity and, again, as well all know, kind of one of the laws of the universe is you have to go, it’s, everything is you shaped. You have to go through something difficult to emerge on the other side, and so I wouldn’t wish this on anyone but there’s some adversity is needed for men as a group at large, that at large are a privileged group, to have a wakeup call about our own vulnerability. For me in some ways it has been a gift and a number of other men have said that. They’ve said I wish I hadn’t had prostate cancer and I wouldn’t wish it on anybody but if you gave me the choice I’d probably say give it to me again.
FF – Wow.
KC – Wow.
MM – I wouldn’t in any way compare that with some of the other cancers that are out there so please, I’m not an expert on this and I know there are much more nasty experiences out there.
KC – I’m thinking about this group of men and I’m imagining for some of them it’s probably the first time they’ve had this kind of conversation at that level.
MM – Well, I’ll do a plug for my blog, it’s www.recoveringman.net.
KC – Amazing.
MM – The vision of this was that somebody who hasn’t even discussed this with himself might sit down in the dead of night and log in to recoveringman.net, and be able to read real life stories of real ordinary people having a wide range of experiences, people of all different sexualities, different kinds of cancers, different kinds of treatment, different outcomes. As Chimamanda Adichie says beware of the single story. This is a website of many stories. So yeah. I think it is, for many men, the first time and I think the opportunity is to read stories, the opportunity is to get into really intimate communities and discussion groups and that can be life changing in a good way.
KC – Thank you Mish, this has been an incredible conversation, thank you so much for your vulnerability and openness, I know this is going to touch many people.
FF – And always good to sit in a common space with you Mish, deeply appreciate it, thank you so much for the work you’re doing to help others in this situation too.
MM – Thank you so much for sharing your journey, Faith, and Katie for holding this and, it’s a great opportunity and I’m happy to hear back from people who listen to this.
FF – Great.
KC – Thank you Mish.
FF – Ok, thanks everybody!
[Music outro begins 38:52]
FF - Thanks so much for listening to this episode of Conversations on Cancer. We hope you’re finding these talks as meaningful as we do and, because every individual is unique, we know that every cancer journey is different. These podcasts may or may not reflect your own experience. We encourage you to honor whatever your own journey is with illness in your life.