Episode 130: No Stress MS Creator Damian Washington

Episode 130: No Stress MS Creator Damian Washington

Overview

Damian Washington is an actor who’s done 30+ commercials for brands like Fruit of the Loom, Realtor.com, and the NFL. Originally hailing from NYC, he attended the prestigious LaGuardia High School for the Performing Arts (Fame, anyone?!). A few years ago, he was diagnosed with multiple sclerosis (MS)…and soon discovered that developing an MS community is the best way to share his light with the world. Damian’s weekly YouTube channel has several thousand engaged subscribers; he sits on Genentech's Patient Advisory Board and the MS Focus Patient Advisory Group; and he makes content for MS Views & News. He’s also been featured by the National MS Society and Shift.MS. Damian was the winner of the WEGO Health Award for Best in Show: YouTube in 2020. Some say they find the silver lining in the dark MS cloud, but Damian says he’s turning poop into flowers…and that the engaged community that's developed out of his shares is one of the best things to come from this horrible disease.

Takeaway

Sponsors

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Transcript

Damian Washington No Stress MS multiple sclerosis WEGO Health Awards YouTube Uninvisible Pod MS

Lauren: All right, guys, thank you so much for joining us. I am here today with the wonderful, the warm, the delightful Damian Washington. I wish who you could all see him right now. He's having a little dance party in his heart! He's throwin’ out his arms to you! Damian is an actor. He is the host of the YouTube channel, No Stress MS. He lives with MS, multiple sclerosis. He has quite a story to tell. And I'm just so thrilled to be able to have you on the show. Damian, welcome.

Damian: Lauren Freedman I'm elated at being in your company and the recipient of such an illustrious introduction. 

Lauren: (laughs) You deserve it. As you said earlier, I threw in everything but your Social Security number, right? 

Damian: Basically. And my zipcode.

Lauren: So for those who are familiar with the show, we love to start at the top of the story, and your MS story is fairly recent. So can you tell us when and how you first realized that you were sick? And what steps you've taken to control your help since then?

Damian: It’s strange, because my wife, the lady who I'd been with at the time 16 some odd years, currently 20, she knew something was off. Because she's been with me all of this life, right. And she’s, like, “You hold me differently when you walk down the street. I don't know what it is. Something is wrong with you, man.” And when I couldn't do my usual high energy, performance, like I normally did … that's when I was able to really reconcile those two notions.

Something's wrong with me, and I have to figure it out. And luckily, it only took three months. Some people have 10 years!

Lauren: That’s exceptional.

Damian: That’s what I’m sayin’. I have seen people go into the doctor's office and come out with an MS diagnosis. I have heard that. Oh chil, that was super quick! Because people live this experience … it’s 10 years, it's five years. It's what I did for three-and-a-half years. And I didn't really know what was wrong with me. Or they misdiagnosed me. So I was doing all this  —or the wrong stuff. I'm here now. 

Lauren: This happens all the time.

Damian: Oh my God. Just figure it out now.

Lauren: Yeah, but for you, three months. 

Damian: Yeah, but for me three months. From understanding what I was dealing with … I think this is kind of why I'm in this space even talking to you. Because before I had a diagnosis, I didn't know what the heck was going on. But once I was able to put a face and put a name to the face … And everything that brings us here together in this shared space is what I am, knowing that I have to deal with that.

Lauren: So the diagnosis was a validation in a sense.

Damian: A validation with a refreshing relief. And as someone who’s from the theater, someone who performs for a living, repetition’s my jam. Jam Jam. So once I was, like, okay, multiple sclerosis, I now have a thing to go into repetition … find all the things and then do those things repeatedly.

Lauren: I'm curious. When your wife first said to you, something's different … was there a process of, sort of animosity, at all? Did you go, “What do you mean, something’s different?” A grieving? I mean, you talk about grief, for sure. You've been pretty public about that process, what it's like to accept your body now, post-diagnosis. So I'm just curious to know … did you come up against any pushback with your wife's feedback and the investigation into the diagnosis? What was that like emotionally?

Damian: Nah, it's simple to be, like, yeah, yeah, right. That's like the the gut level instinct. But because we've been doing this for quite some time and are still doing this, we got the receipts. She's right more than me! 

Lauren: Happy wife, happy life, they say!

Damian: I have enough self-awareness, even in blind spots, to look at the receipts throughout life. And not knowing what's up or knowing something's off is one thing. But knowing my friend … we’ve been going together since college. Currently, the longest Angela and I have been apart is 12 days. We built this thing. This is it.

And having the perspective of someone who is here, and you know that they are presenting their observations. And like it or not, this person gives good data …

Lauren: So it sounds like your wife advocated for you before you knew you needed an advocate in the healthcare space. Has she become your advocate? Have you stepped up as an advocate, too? What’s that dynamic been like for your relationship?

Damian: Once we’ve pretty much known what the heck is wrong, it’s, like, okay, great. Knock yourself out, DW.

Lauren: It’s all you. So, what does a typical day look like for you? How are you balancing the demands of work and life as you are managing potential flares and symptoms — because you're living with relapsing remitting MS.

Damian: Yeah. She comes and she goes!

Lauren: What does that look like for you? Whether it’s medication and infusions, but also holistic methods … what's Damian's daily toolkit look like?

Damian: My daily toolkit is whatever the hell that I can find/come across. And you take what you take, and you leave what you leave.

Lauren: You try everything, it sounds like.

Damian: I do what I can.

You walk around with an open, accepting heart, and no matter who is saying what in front of you, you can take it or you can leave it.

I’m just aiming to take it as much as I can. That's the point. If it doesn't resonate with you, leave it. If it does, take it. So if it doesn't resonate with me, I'll leave it. But if it does, I take it and frickin’ send it to the moon!

Lauren: This is something that you and I were talking about before we started the interview, right? We're both from New York, we grew up in a culture where you get up and you go, go, go, go, go. And meditation has taken on a huge role in your life, right?

Damian: Yeah, it's strange how that has sort of popped up. Because yeah, you live your go go go but I have cultivated the habit of be be be. I'm a 1980s Harlem kid, okay. You know how to make the moves. I was in college, and I already had my minor in Eastern Asian religions. I read the syllabus and was, like, oh, that's cool. And then went to classes and started hanging out with all the people in the classes and reading all the books and acing all the papers. After that happened a couple of times, it was, like, oh, you can get a minor. And so I actively took a couple more classes and sort of had this vast learned knowledge of the history of and practice of Buddhists. And when I moved to LA, another actress friend of mine, my homie … another in the trenches gal, me her … I was like staying on her couch as I was figuring out New York, LA. And I would notice that every day, morning and evening, she would go inside this closet that only had a few jackets and stuff in it. What's going on? This happens a few times and I’m, like, “Girl, you goin’ in your little prayer closet? What's goin’ on?” She and I, we have made magic together on stage before. And she’s, like, “Damian, if you don't have some sort of practice out here, you will lose your mind.” I was, like, well, TM costs $1,000. I've read enough books to know that I could do this for free. So I'm gonna figure this out. 

Lauren: TM is Transcendental Meditation for those who don’t know. This is something that just pre-dated your diagnosis. So you were already actively meditating because of life in LA and being an actor.

Damian: Yep, and I think that this shakiness is sort of me developing the habit. And now as this is all coming together, it's like: now it’s steady. I walk better when I'm sitting for a half-hour. That's enough for me to be, like … all right, now what time is it? When’s the last time I sat? You know what, bye! Or, I’m gonna fix this dinner and then I'm gonna be gone for a half-hour. Knowing how to manage that is really how that habit has come up in my life.

Lauren: And would you say … I mean, you're doing that every day. That’s sort of the placeholder for the beginning and the end of your day now, too, like your friends.

Damian: Great teamwork! And I’m even hesitant to say that, because the practice nerd in me is, like … you know, you're not always on your practice. Sometimes you miss the day or you miss the night or you miss a couple of days of a couple of nights or whatever. 

Lauren: That’s life. 

Damian: That’s life.

But when I'm dialed in and I'm legit, boom!

Sometimes the half-hour seems like a half-hour; sometimes the hour goes like that! I’m, like, there's value in this.

Lauren: I'm wondering about your experience of being dismissed. We're people who believed each other. You got your diagnosis pretty quickly. Have you ever been in situations where you've been confronted and forced to validate your diagnosis to people who didn't get it, because they couldn't see it?

Damian: No. And as a force, I've just been, like, make sure you keep that out here. Cuz whomever trips on that, bro, they don't need all of you, my guy. Nah, don't do that!

Lauren: Right. So you try to protect yourself from having interactions like that?

Damian: I’m trying to protect other motherf*ckers! Yo, bro, you don't even know. 

Lauren: You haven't experienced that kind of prejudice yet from the public. Have you experienced that within the healthcare system — any prejudice and or privilege as a Black man walking into the US healthcare system? I'm wondering how your identity on the outside has influenced your experiences, if at all. Can you see your circumstances maybe being different if you were female? Or if you were white? It’s loaded!

Damian: I know I would be different if I was a lady.

Lauren:  Well, part of me wonders if these experiences that you're talking about, that you haven't had yet … maybe because you're male?

Damian: Come on out. Okay, talk about it. You're just gonna have to say some shit to that Black man over there. It's not on the surface. But it’s here so what's up? 

Lauren: But then what about that with doctors? 

Damian: People don't want that piece that they would bite off when dealing with the Black man. 

Lauren: So you're like … what are you … 6’1”, 6’2”?

Damian: 6’2”. But I'm not wide. I'm 135. And that’s another thing …I have weighed as much as 160, 170 lbs. But my current jam is 135. 

Lauren: So you're imposing in height, vertical wise! 

Damian: Yeah, you’re not gonna really feel larger than me —unless you're larger than me! And that's something else. 

Lauren: So there's almost an imposing physical … 

Damian: That's what I'm sayin'. You won't really come over and say that shit. That's privilege.

Lauren: And presenting as a heteronormative male.

Damian: Everyone has their own set of privilege … their own set of hindrances because of their thing and their own set of privileges because of their thing.

I’m a man, so there's the privileges and the hindrances associated with that.

I'm Black. I'm a man, over 6’1”.  You ain't gonna try to rock that boat, fam. You’re just not. And those that are willing to rock that boat? Trust me. Once they start rockin’ that boat, they’re, like, oh, I shouldn't have rocked that. Been there.

Lauren: The thing is, we also know, statistically, race alone within the health care system …

Damian: African-Americans have a disproportionate level of disease progression and severity. Just on numbers alone. 

Lauren: It’s because of systemic racism. 

Damian: You play the cards you’re dealt. No matter what it is. So you get the diagnosis. And now you’ve got these costs. So you’ve got to play these costs. Just my going to Middlebury College, and having a partner with me in that experience, who went to Middlebury as well, is helping my way forward.

Lauren: Helping you navigate, I guess heretofore unfamiliar territory?

It's like that code switching that we brought up earlier, that switching, that cultural shifting … that there's some some dodging and bobbing here.

Damian: Code switching is certainly what it is. When you live with having a code with which to switch, you are even a touch more removed from the code situation. And in a lot of ways you do it because there's going to be some trigger-y shit out here. And if you get triggered how it's normal in your environment to respond, it might be outsized! Even if it's rude, even if it's f*cking petty.

Lauren: Even if they're wrong.

Damian: That little old lady was down here from Pasadena, looking at you in some kind of way cuz you parked in a handicapped spot. And right now you're trying to just get in and out of the spot right and she says some shit to you? Please don't bring the Uptown Dude to work. Please don’t. So you work to manage your way through that. And I can say, luckily, I have not needed to have had to manage my reactions.

Lauren: But what you are calling to attention here, though, is the fact that anyone who is a person of color or a body of culture, right … what we were talking about earlier … who lives outside of the accepted norm, if you will … it's not norm, but the accepted cultural  what is accepted as the main thing — which is white, white, white. 

Damian: The status quo.

Lauren: So anyone who deviates from that view — with gender, with race, with sexuality, with any kind of, signifier, identifier. You are always dealing with a level of self-management in order not to have an outsize emotional reaction to other people's ignorance.

Damian: To protect ourselves, protect ourselves, protect them. They did not know that they stepped on that landmine. They know that they stepped on you. And that's a whole ‘nother matter. But now this thing has been triggered.

And boy, if you move, you do the wrong thing, that's gonna be one of the last moves you made today!

That balance, that dance was what it is. And you managing your own jam. Frickin’ people, frickin’ your family, frickin’ whatever … when that stuff’s comin’ at you, you’ve got to learn how to manage it. And even me right here in the past few days, the past week or so, I'll just be, like, you know, what? I'm gonna assert certain things. And having that way forward, you could just only hope that someone who was dealing with something health-related can grab onto.

Lauren: Would you say that these inequities … I mean, we're experiencing them all over the culture. But we know that statistically, of course, they happen in the healthcare system at enough of a rate that we have data to support the fact that there are occurring. Would you say that racial inequity, gender inequity, in the health care system is a public health crisis of its own?

Damian: Absolutely. A lot of what we consider modern medicine miracles have come from nightmares of Black people. 

Lauren: So let's let's round out this conversation about the health care system. In what ways, from your experience as a patient, are you seeing the system work for patients here in the US? And in what ways is the system falling short? In what ways does it require improvement?

Damian: It requires improvement just in the fact that it should not be 12 grand to go to the doctor — if you're lucky. 

Lauren: So no more GoFundMes for medical payments.

Damian: Managing this stuff, calling in the prescription, the specialty pharmacy and the facility and the doctor's office and the health plan.

Lauren: You’re sick. You're working. You do not need an extra job making phone calls.

Damian: I have an extra job just so that I can get the medicine to alleviate the body eating its brain and its spine. Every six months. 

Lauren: For anyone who's confused by that, it’s your infusion. You're getting an infusion twice a year. You're talking about the myelination, but what you're also talking about is being able to access your own infusions, which are helping stave off further damage to the myelin.

Damian: I’ve had Cadillac health insurance so speak for quite some time, and recently that's been shaken, and as I've managed to settle that … forget disparities, man … forget racial disparities, bro. If you’re lucky to have the 12 grand bill a year; yeah, if you’re lucky you have coverage in this country. So that's got to get shaken out, man. Like, come on, man. That's half a year at McDonald’s, flipping burgers.

Lauren: Is it half a year? It might be a whole year. Your average person cannot access health care, financially. That’s the problem.

Damian: I can access all his air and I can access all his water. But if I fall down, or if something’s not going right with me, what we got going on right now is, like, give me this 14 grand. Also, I might hit you back 30% on your deductibles? And that's a whole ‘nother set as well.

Lauren: It’s January, I just hit my deductible. How quickly are you doing that? Are there any things that are working? We know that the role of private interests in healthcare isdriving up prices. That's a problem. But are there any things about the health care system here in the US that, as a chronic illness patient, you are, like, yeah, that works. You're allowed to say nothing.

Damian: The good thing is this space, this space that you make, the space where people watch me every effing week … it’s specifically American, man.

Lauren: Yeah. This space for free content creation. And free speech.

Damian: It’s speech and dynamism. You know what, I'm going to make an Instagram account about healthy meals!

Lauren: #wellness! Let's talk about that. Why don't you talk to us about NoStressMS. You mentioned earlier in the interview that you are already creating content on YouTube. And when you got your diagnosis, you weren't really getting a lot of traction. You got your diagnosis, and you were, like, I'm just gonna start talking about what's actually happening with me. And now you're a WEGO Health Award winner.

Damian: So running around Hollywood, and I’ve done almost 40 commercials, and with voiceovers under my belt — you can pay the rent on that. I could not get on TV longer than 30 seconds. And knowing that that's my life, and that's my world, and I'm part of an ensemble. And I'm running and gunning for that. One of my homies from the old school got one of his shows picked up on Netflix. And that’s running right now. So years ago, well before this, he was, like, “Yo, I got this YouTube damn jam poppin’. It's cool and strong. And I like it. And it's fun. Also, you need to do this. I don't know what it is you’ve got to talk about, I don't know what it is you want to do, dog …” 

Lauren: But you got a personality, 

Damian: “Put the camera on and talk, dude. Now.” When I was on bed rest from the spinal tap that did not properly heal, and only looking at the ceiling or the bathroom wall for 12 days … my wife says 14, but who's counting. Bottom line, if all you can do is pee and sleep for weeks, you’re runnin’ that mind. And I just hit my man, like, “Yo, dude, you’ve got to start making YouTube videos.” And I was, like, I don't know what it'll look like, I don't know what it's gonna be. But when I get out of this bed, I'm gonna make YouTube videos. And it wasn't until about seven months of creating every week, it wasn’t until me going to get an infusion, and thousands of people watched it … and you make all your other stuff and six people watch it … and you make some other random follow-up video to that infusion thing, thousands of people watch it.

Lauren: This is not the first time we've heard a story like this. There’s that wake-up call, that people are responding to the real shit.

Damian: ...

As much as I didn't want to be the MS guy, you’ve got to give the people what they want.

I’m the MS guy. 

Lauren: Are you glad you give the people what they want? 

Damian: Glad is not even it. It’s more like you step into the room that is you. You run around Hollywood trying to distill you or put you in the scripts as boxes. And I’m good at that. But me talking about my MS, or this thing that I've read, it's turned into this thing.

Lauren: But it's the thing that is good for you. I like that you say it's like opening the room to yourself, opening the door to yourself, because it sounds like that work, which has served so many other people, has also enabled you to step more fully into yourself. 

Damian: There’s no words on there. You've got to let that breathe. That’s real.

Lauren: Yeah, and something that that also came up for us … because you and I are always chattin’, before we started the interview, was also this idea of creating to heal. Using your creative work, that it's something that has not only opened the door to who you really are, but has also given you the opportunity to find some healing in the midst of the madness that is living with a chronic illness or disability. That there's some healing in that community.

Damian: ...

The community is the healing.

The space that one finds in making messages for community, it's not even that it's a humbling space. It's one of these … don’t nobody know about yo jam. Like even if me and him or me and her, we’re from totally different places or cultures or whatever … she’s Black so we got some shit in common, homie. It doesn't matter what the shit is, if me and you got MS, we got some shit in common, homie.

Lauren: Well, and that's what's so beautiful, too, is that these different layers of identity that you're talking about, that you're able to commune with people about … they also transcend some of these other forms of identity. Talking to people who have MS or to people who have chronic illness, you and I are able to connect on that experience. But we have different gender experiences, different racial experiences, probably different religious experiences. Okay. We can also connect on growing up in New York, but we have different experiences of New York, too. It's being able to bridge so many gaps in finding community. Damian's pointing at me so much, so I think I'm onto something. (Laughs) I love it. Damian accesses very deep listening by closing his eyes, which I think is a really beautiful thing.

Damian: I'm listening the whole time, of course, but then as the deeper we get it’s, like, oh, no, shut it all down and just hear these words, man. 

Lauren: Just don't do it while you're driving. 

Damian: Just don't do it while you're driving. That's not a good look. There's not many people better at hitting marks and saying lines than me. If there are, they’re household names. So that skeleton propping up the meat that is MS has continued to unfold into some extraordinary things. That are really wonderful.

Lauren: So, here's what I'm wondering. You are an experienced, well-versed patient. You talked to people in this patient advocacy space all day, this is what you do. Do you have tips to share for people who are tuning into this episode. Maybe someone suspects something's off, maybe their wife has told them something's off. Maybe they're diagnosed with MS. Maybe they're five years into diagnosis like you. What are your Top Three Tips for finding ways to thrive?

Damian: Step one, whatever is stopping you, stop it. If it's the small voice, if it’s … I don't know what it is. If it's the ‘maybe I don't know about that,’ or, ‘no, I'll start tomorrow.’ Whatever the hell you want is on the other side of that.

Wade through it, you’ve got to crunch through it and keep going.

And then you will find you’re, like, oh, this is what I wanted way back then! That’s the only thing that I can say  — because everyone, everything is individual. And so my meditation habit could be quite helpful to you, but it might not be as helpful to you as it is to me — and vice versa. This is not pedestal placing, it's the other ring that goes on in … hey, this person has this thing, but they don't seem to have what I have, or they don't seem to have it as bad as I have it. And that person’s other than me. So I either watch the show to see what the other half is doing, or I see myself in them. Whatever. So having the experience of … not even, it's more than othering. It's saying that is worse than this. And that is the most misplaced notion.

Lauren: That it's okay to stay in that fear place, or it's okay to stay in that lack of growth place. That's not right.

Damian: The only way you're not going to be dealing with trash that's in front of you, is if you embrace this thought that you shut down, if you embrace this habit that you shut down. It’s the only way.

Lauren: Is it: The only way out is through? 

Damian: The only way out is through.

Lauren: You’re talking about very specifically a commitment to self, and to growth.

Damian: This is getting back to a theater thing. There's something about going into that box and knowing a connection between you and the people who are watching in that box. It’s repetition. It’s the only f*cking thing.

Lauren: And repeating what's successful, right?

Damian: Right. And growing on that. You repeat that script a bajillion times. You repeat that blocking a bajillion times. So you can just be, and the other person will be, and magic happens. 

Lauren: So the only way out is through. Keep going, keep repeating, and grow on successes. 

Damian: Like you say, the only way out is through. Whatever the hell it is you want it is on the other side of something you do not want to do. With all of my credits and all of my other stuff, I was loathe to put out a video every week. Over half-of-a-year. But the goal. So, whatever you're dealing with … family, whatever issue it is, whatever health thing, maybe you don't even know what it is yet. That's why you have to do whatever, and stick to it, and then be, like, okay, I don't do this anymore.

But whatever the hell it is you want is all deep on the other side of what you don't want.

Lauren: So I'm wondering … this is my favorite question, especially because you're such a firework burst of a human being! What are Three Things in your life that give you unbridled joy? You’ve obviously had to make some compromises on your lifestyle, be it diet or exercise or whatever, because of your diagnosis. So what are Three Things that you turn to that you refuse to compromise on? That give you joy, that light you up?

Damian: Take in the stillness. You will always feel better, and you will never regret meditating, ever. Having the time and then being in the body after you’ve had a half-hour of just sitting there. My walk is different, my knees don't hurt as much, my balance is better. There's function that I get out of it. It sounds like a simple thing to say, but if I'm gonna do it, I'm gonna do my joy and not compromise, girl. 5:30am, I'm here. Before the sun is set, I'm here. As the sun is setting, I’m here.  I'm less of a person when I don't. That's not a slight on me. That's just knowing I'm not setting myself up to be all that I can be. 

Lauren: Anything else? 

Damian: No, that's it. That's real. I take what I want. This is the second damn time this has come up … I was talking to somebody … there's a Sam & Dave song, “I Take What I Want”! I've always been that way. When I was younger, and hearing older Black men sing that song, it’s engraved.

Lauren: Yeah, it's empowering. 

Damian: I’m a bad go-getter.

Lauren: And you can also leave ‘em behind. That's a freedom.

Damian: Learning to let go. And learning to let go again, when it comes back. Because if the habitual nature of it all has caused it to come back, it’s cool. Let it go again. It doesn’t matter if you've been letting this go three weeks … you've got to let it go three-and-a-half weeks.

Lauren: It’s that commitment and that discipline that you talked about in your tips for people, in general.

Damian: It's baked in in me. And I think that's why I find success.

I’m not looking for it, but the things that make you successful in this realm are baked in.

And extraordinary. Massively disproportionate to what is generally available. 

Lauren: Absolutely. So okay, what is your ask for listeners who are tuning into this episode, who are getting a taste of DW? What can they do to support you?

Damian: You can go to youtube.com/NoStressMS if you want to keep up with that. There's DamianWashington.com if you want to keep up with your DW news. What can you do? You can do the thing you don't want to do today, even if it's two minutes of it, even if it's a paragraph of you supposed to be reading 10 pages a day, read one page. Whatever the hell it is you don't want to do, please, I implore you, do it. 

Lauren: Challenge yourself. 

Damian: Now. And do it again. How am I going to be whole? I'm not saying you have to pull it together. That's not that's not what I'm saying. It's just … learn from enough repetition. What you want is on the other side of what you don't want to do.

Lauren: So what is next? What's next for you in your advocacy work and for your own health?

Damian: I got an infusion in another couple of weeks! I’m on the phone …

Lauren: Keep gettin’ those infusions! We keep that myelin where it is.

Damian: ...

I'm really aiming to be as creative as I can and pump out as much content and do as much cool stuff with as many cool people as I can.

That's what's next for me, Lauren Freedman, being happy to be in company with people like yourself and swimming in all that goodness. And seeing where it takes me!

Lauren: And we will link to all of your wonderful content on the web page for this episode. Damian, you are a joy to behold, you are extraordinary. Thank you so much for your time today, your presence in the moment and for leading by example, and showing us how we can find that equilibrium and find that center again when we move through it. And for that I am very grateful for you.

Damian: I appreciate that sentiment from you. Respect. Thank you. Thank you.

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