I Don't Know How You Do It

A Father's Journey Living with Mito, Awareness Part 1 with Adam Johnson

September 19, 2023 Jessica Fein Season 1 Episode 35
A Father's Journey Living with Mito, Awareness Part 1 with Adam Johnson
I Don't Know How You Do It
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I Don't Know How You Do It
A Father's Journey Living with Mito, Awareness Part 1 with Adam Johnson
Sep 19, 2023 Season 1 Episode 35
Jessica Fein

Grief and hope. Courage and vulnerability. Becoming findable and maintaining privacy. Rare disease is full of paradoxes, as guest Adam Johnson explains. 

A man of remarkable fortitude and resilience, Adam faced a Mito diagnosis that led him to abandon a career he loved in education to become a dadvocate for mitochondrial disease. Adam’s resilience bloomed from his experiences with the disease; he knew staying silent was not an option if he could find connections and prevent others from enduring unnecessary periods of uncertainty, desperation, and loneliness. He ventured into unknown territory; creating a supportive community on social media, a platform through his website and blog, and even running a support group for fellow fathers in the Mito community.

This isn't the end of you. It's just moved and evolved to this point where I'm a little more comfortable in this skin that I have now. - Adam Johnson

In this episode, you'll learn:

  • Why it's worth putting yourself out there and becoming findable
  • How a diagnosis is not the end of you
  • Why there's no right or wrong way to proceed
  • How you might be helping someone you don't even know
  • How to make a difference even if you're still in Middle School
  • And so much more...

Learn More:

Adam's Website
Linked In
Emma's fundraising site
Adam's Parents As Rare series on MitoAction’s Energy In Action podcast:
Dalia's Wish
Megan Devine

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells

Show Notes Transcript

Grief and hope. Courage and vulnerability. Becoming findable and maintaining privacy. Rare disease is full of paradoxes, as guest Adam Johnson explains. 

A man of remarkable fortitude and resilience, Adam faced a Mito diagnosis that led him to abandon a career he loved in education to become a dadvocate for mitochondrial disease. Adam’s resilience bloomed from his experiences with the disease; he knew staying silent was not an option if he could find connections and prevent others from enduring unnecessary periods of uncertainty, desperation, and loneliness. He ventured into unknown territory; creating a supportive community on social media, a platform through his website and blog, and even running a support group for fellow fathers in the Mito community.

This isn't the end of you. It's just moved and evolved to this point where I'm a little more comfortable in this skin that I have now. - Adam Johnson

In this episode, you'll learn:

  • Why it's worth putting yourself out there and becoming findable
  • How a diagnosis is not the end of you
  • Why there's no right or wrong way to proceed
  • How you might be helping someone you don't even know
  • How to make a difference even if you're still in Middle School
  • And so much more...

Learn More:

Adam's Website
Linked In
Emma's fundraising site
Adam's Parents As Rare series on MitoAction’s Energy In Action podcast:
Dalia's Wish
Megan Devine

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells


Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey and I hope you enjoy the conversation. Welcome back to the show. This week is mitochondrial disease awareness week. If you've been listening to the show for a while, you probably know. that my daughter Dalia died last year, one week after her 17th birthday, from a form of mitochondrial disease called MERRF syndrome.

This week, I'm sharing two episodes of the podcast focusing on Mito, which is the shorthand for mitochondrial disease. Before we get into it, in the spirit of awareness, I want to explain that [00:01:00] mitochondria are the powerhouse of our cells, responsible for creating more than 90 percent of the energy needed to support growth.

Mito is a progressive disease that can have mild symptoms like exhaustion and weakness, or severe symptoms that lead to pain, seizures, vision loss, hearing loss, organ failure, and death. Approximately 1 in 4, 000 people have Mito, and there is no cure. 

Today's guest is someone I'm so fortunate to call a friend, Adam Johnson.

Adam is a rare disease patient and self proclaimed dadvocate. He's a lifelong educator who lost his career after receiving a Mito diagnosis in 2019. Feeling alone, afraid, and helpless, he sought connection with others and began advocating through social media, a website, and a blog. He also hosts a support group for men in the Mito community and a podcast series called Parents as Rare, part of Mitoaction’s [00:02:00] Energy in Action podcast. Adam's overall motivation stems from the goal to own his story while supporting others along the way, including his children, family, the rare disease community, and other parents facing similar challenges. It is my honor to introduce you to Adam Johnson.

Welcome, Adam. Thank you so much for being here with us today.

Adam Johnson: It's my pleasure, Jessie. Thanks for having me. I really appreciate it. 

Jessica Fein: Can you start by telling us a bit about yourself and your journey with Mito? 

Adam Johnson: Yeah, yes. Well, I guess if I kind of start back at the beginning before Mito came into my life, I would say that I'm a dad and a husband and I was an educator before all this really started happening.

I was traveling around the country when I was 35 years old, about four years ago, and I was teaching teachers all over the country. It was fantastic. I loved my work. Before that, I was teaching elementary school, second grade, fourth grade. I taught some grad school in the evenings. I [00:03:00] taught full time undergrad for a couple of years in the field of education.

I just loved it. I was just a teacher. From the moment I was young, I always wanted to be a teacher. And as I was traversing all the different areas and working with different school districts and principals and teachers, I started having some odd symptoms pop up. And you know, I was fairly young and so I was going, man, I don't think this is right.

This doesn't seem normal, right? But. I also don't have time for this, so I'm just going to push it aside and pretend like everything's fine and navigate the best that I can. And I did that until I couldn't anymore. My workouts became incredibly tedious and challenging and difficult and it was just something that was really weird.

Then I started being shaky and I had my first fall coming home after a work trip and I figured, man, I better investigate this a little bit. And so that started my diagnostic odyssey. Which for me took just under a year to arrive at a diagnosis. That's not long for many people in the rare disease community.

[00:04:00] I'm appreciative and grateful for the path that I took and it felt like forever. Right? As you're going through that and you're seeing every single local option that you have and you exhaust all those options. And then you're traveling out of state and you're going to these clinics and you're seeing these highly prestigious professionals that are experts in their fields.

And when a couple of them look at you in the eyeball and say, this is all in your head, get over it, knocks you on your butt a little bit. And so when I was finally able to come across that clinical diagnosis of mitochondrial myopathy, it was a bit of a relief. And it was also the start of something way different than I anticipated once I finally was going to get those answers.

Jessica Fein: Did you have any idea at that time what it meant? 

Adam Johnson: No, nothing, nothing, no clue at all. I was, I remember vividly sitting in the doctor's office and it was kind of like his last stand. He was like, we've done all these tests. I've sent you all these places. I just read the reports from the latest tests you had.

I've got one more thing I want to try. And he tried it. And I was going, okay, this is going to be it. We're going to get the [00:05:00] information that we need here. And I remember going into the office thinking, this is going to be good. I'm going to get my diagnosis. I'm going to get a treatment. I'm going to get a cure and I'm going to get back to life as I knew it.

Right. And that's not what happened. He said, mitochondrial disease, mitochondrial myopathy. And I'm like, excuse me, can you slow down a little bit? What is, what are you talking? Mito what? Like, where's my thesaurus? I don't understand the words coming out of your mouth. I just figured I'd use those for Scrabble at some point later on and get a bunch of points.

I didn't, I didn't know. And then you're thinking back, like mitochondria is familiar, high school biology class, powerhouse of the cell. That's all I knew. And he didn't really have much more information for me at that time. He was like, Hey, it's a progressive disease. There's no treatment. There's no cure.

I'll start up on the longterm disability paperwork for you. And you just need to manage your symptoms. And I'm just trying to figure out which direction is up at that point. 

Jessica Fein: Your life was just turned completely upside down, but here you are, a dad, and a spouse, and you didn't really have the [00:06:00] option to just, like, give in and give up.

Not that I could see you doing either of those things, knowing you. But how did you go from that initial diagnosis of, like, okay, maybe I have some scrabble words here and I don't even know what you're talking about, to being, as you put it, a dadvocate? 

Adam Johnson: Well, it was a journey. It did not happen overnight, nothing close to it.

It was quite a process. I went into a pretty dark hole, and I was already in one, because I was starting to think based on the feedback that I'd received from some of the other highly regarded professionals that did not treat me in a professional manner, in my opinion, I had my doubts. Right? Like those things start creeping into your head, and I'm wondering maybe I do need to just get back to that mindset of push this stuff aside and move forward and figure it out and push through.

And then once I finally got the answer and it was something different and it's a no treatment no cure thing, I'm going, well now what? Right? How am I supposed to bounce back from that? It was incredibly challenging. [00:07:00] And I, you know, I was already in this depressive state after I thought that it might not have been anything.

It might have been nothing. And then I just, I don't know. It was just such an odd dynamic to go from that state to, Hey, I finally figured it out yet. There's still nothing we can do about it. And so it did take quite a while for me to climb out of that hole. And once I did, the thought process was, boy, I feel like I'm the only person in the world going through this.

Right. And I know that that is now, I know that that is a common refrain when we're talking about topics like grief and loss. And I kind of just at one point thought, man, that can't be right. That can't be true. There's got to be somebody else out there that can relate. So I started searching around and I've since found that, you know, in order to be found, you have to become findable.

And before that time, Jessie, I'd never been on social media. I somehow avoided it for 36 years at that point of my life. 

Jessica Fein: Well, congratulations on [00:08:00] that. 

Adam Johnson: I know, I thought it was quite an accomplishment. If there was one thing that would lead me down that path, I guess this was it. It was coming into the space where I was so alone.

And I decided to try to see if there was anybody else out there in the world. And I dove into social media at that point to try to figure that out. 

Jessica Fein: There's so many things you just said that I have questions about. So first of all, did any of those medical professionals who said, there's nothing going on.

Did any of them come back to you or did you go to any of them? You know, I think about that scene in Pretty Woman when Julia Roberts goes with the bag and she's like, look, look, you know, Oh my gosh, I love it. Yes. Like a waving, waving the diagnosis. I mean, did you ever end up having any conversations with any of them afterwards?

Adam Johnson: The urge was there. Let me tell you if I could ever channel my Julia, I would have done it at that point, but no, and honestly, it's too painful. I don't want to ever go back to those facilities, but I did think about that. Yeah, I'm going to do the march in, right? The walking, like, hey, read it, read it. And we, you know.

Jessica Fein: But you don't want to be right. I mean, that's the thing. And you know, it's [00:09:00] so interesting. I relate so much with this whole notion of I got to get the diagnosis, got to get the diagnosis, of course, because once we get the diagnosis, then presumably there's a treatment and we can begin to to move forward, right?

When it's all shrouded in mystery, you don't have any idea what you're dealing with. And of course, we all know it's better to be able to know. Your foe and be able to name it. On the other hand, when you then find out, yeah, you, you're right. There is this thing and P. S. It's this horrible progressive thing.

Right. You know? 

Adam Johnson: Yeah. It's brutal. It's brutal. 

Jessica Fein: So you get on social media, you break your claim to fame of never having been on social media and you start to find people and connect. And how did that shift things for you? 

Adam Johnson: Well, the biggest point for me was when I found the gentleman named Brian Wallach, who is an incredible advocate in the ALS community, along with his wife, Sandra Abrevaya.

They're a phenomenal couple. If you don't know them, find them and follow them and support them on their journey. It's amazing [00:10:00] what they've done for the work in the ALS community. But one specific tweet that Brian put out, and he said that he was at the park and he was watching his girls. roll down a hill and they were giggling and they were laughing and they were just having a fun.

And there were two reactions that Brian had. He said that he was one seething at the progression of his disease because a year ago at that time he would have been rolling down the hill with them. He would have been playing with them and now he's not. And then the other part of him was happy to be there and enjoy us and really enjoying that moment being present in that moment and loving the fact that he was watching his girls have so much fun.

And I was like, Oh my gosh, this guy gets it. I get him. We can relate to this. And while you would never wish anybody to be in that situation, it was a comfort to me, right? Like that was the answer to, is there anybody else out there going through something similar, even though we've got different conditions, different progressions and so forth, it was just a big moment for [00:11:00] me.

And I'm so appreciative of being able to connect in that way. And that really led me down to seeking more, right? Where's everybody else. how can I connect with other folks? And then that led me to our mutual friend Effie Parks, and that then led to me sharing my story for the first time after that. 

Jessica Fein: Effie was the very first guest on this show.

So if you are listening and you haven't heard that episode, when you're done listening to this one, go listen to that one. Episode number one.

Adam Johnson: Yes. Oxygen tanks, right? I was going to say the same thing you just said, Jessica. She rolled through the oxygen tanks on that episode and I was going to tell all your listeners, if they came in late to your podcast, definitely go back and check that one out because Effie rocked it.

And you and Effie in the same place at the same time, that's like worth the price of admission. I don't care what it costs. It's like Taylor Swift level. You're like, I'll pay to get in, get me in there. Let's listen to this. Yeah. 

Jessica Fein: Oh my gosh. Wow. Let's just end this conversation on that note. All right. So you are, and we can see [00:12:00] it right over your shoulder for people who are listening and aren't watching.

There is a screen and it's gorgeous and it says rare disease dadvocate. What is a dadvocate and why is that the term that you chose to identify yourself?

Adam Johnson: Yeah, well, a couple of different reasons for that, but one being when I first did signed on to the Twitter, as I called it, I was going, I'm not putting my name out there.

This whole Adam Johnson guy is not attaching his name to anything just yet. I'm going to dip my toe in this water as like delicately as possible just to see what's going on out here. In the Twitterverse. So I came up with the term, I thought I came up with it. And I've since learned everybody loves the word dadvocate.

I think it's awesome. It's fantastic. 

Jessica Fein: I think everybody heard it first from you. We're giving you the credit.

Adam Johnson: Okay, well, let's go with that. All right. I appreciate it. So I was like, well, what do I make for my handle? I was like, Oh, rare disease, dad, I've got a rare disease. I'm a dad. And then I love advocating, right?

So I could see this dadvocate term really catching on. So that's what I rolled with when I was starting to find and introduce myself to the world, even though it was in this [00:13:00] secretive way. I later decided to attach my name to it and become more findable, as I like to say. But for me, I'm a dad first, and I'm an advocate second.

So that's why I go with dadvocate, um, in that term. And rare disease is just something that altered my being. An advocate is what I aim to be, I try to be, and a dad is what I just love being. So that's kind of the heart behind the rare disease dadvocate moniker that I have. 

Jessica Fein: I love it. How has the way people see you changed over the last few years since the diagnosis?

Adam Johnson: Ooh, well, I think that's a multifaceted question because there are just a few different layers to it, right? One thing that really stands out to me was how somebody else helped me see the way I see myself. And it was really powerful in that moment. They called me out on my bio on Twitter, Instagram, because I put former educator.

I lost my career, right? I miss it. I spent years [00:14:00] and all this time and effort and energy and I've got my grad school degrees and stuff learning how to teach and lead and it was just gone in a second. They read that afterwards and they said, excuse me, yeah, take that word former out. You're still an educator.

You're just educating in different ways. And it turns out that they were right. I didn't know how I felt about it at the time. I'm, I'm still teaching. It's just a much different way than what I ever planned on. Right? Like I get imposter syndrome sometimes because I'm sitting here just talking about these things.

I'm like, I don't know about that. I didn't get my graduate degrees and this stuff, but I've got the lived experience in that. And that comment really helped me move forward. Somebody else told me too, this isn't the end of you. And I called BS at that, at the beginning, because it sure felt like the end of me, right when all this first started.

But they were right as well. And it just moved and evolved to this point where I'm a little more comfortable in the skin that I have now. So I've changed the way that I see myself in some ways. [00:15:00] And I think that that others have as well. And it's not always in that, you know, shiny of a light. I wonder about the way that my kids see me.

That's one of my biggest worries. And fears as a dad going through some of these things is what does this all mean for them? And how do they see things? What happens when they see me struggling or falling or losing my strength? Leaning into my ventilator more? Like all these different things. So that's one thing that I do worry about in a sense in terms of how they see me.

Jessica Fein: A lot of people might not know what it means to live with Mito. And so when you're saying leaning into the ventilator or things like that, can you describe how Mito affects you on a day to day basis? 

Adam Johnson: Yeah, you know, I mean, anybody that knows about Mito, you and I do, it does impact everybody differently.

It's such an umbrella, right? There's so many different conditions that are more specific than that. For me, yeah, I'm one of the old guys that had it present [00:16:00] later on in life, rather than from a child, and for me, there's a lot of muscle fatigue, there's pain and brain fog, and a secondary condition for me called extrinsic restrictive disease.

And it impacts my respiratory muscles. And so outside of the musculoskeletal system, for me, which is why I'm dependent on things like my CAFO, my knee, ankle, foot orthotic, and my cane, my rollator walker. And when I'm going distances or moving around quite a bit, my scooters, the next biggest thing is my respiratory muscles are failing.

They revealed that through pulmonary function tests that showed that for a guy my age, my muscles weren't working the way that they're supposed to. So that's the point in time, Jessica, when my pulmonologist gave me a ventilator, which is thankfully on a non invasive setting and we want to try to keep it that way as long as possible.

There are some conversations now starting about a trach, but we're not there yet. So let's keep it that way for as long as we can. But that's the only way to get my failing [00:17:00] respiratory muscles a chance to rest. And rest is the name of the game for folks with Mito. We cannot just push through. It's going to cause more damage and set us back.

So the only way to give your respiratory muscles a chance to rest is to have someone else or something else do the breathing for you. That's the ventilator comes into play for me. So I use that all night. And then I use it throughout the day as needed, just to give my muscles a chance to catch up a little bit.

Jessica Fein: Thank you so much for that explanation. One of the visuals and I forget where I first heard this, but it helped me when I was trying to wrap my head around it is to think about when your phone is on low battery and you see that signal of low battery. That's the starting point for a lot of people with Mito.

So when you think about rest being the name of the game, that's what you're dealing with is just because mitochondria are the powerhouse of the cells when the mitochondria are compromised, that's what the impact is. 

Adam Johnson: Yeah, that's correct. Yeah. And I, I use that battery [00:18:00] analogy. I always think about, um, Seinfeld.

He did this bit on devices before, uh, on like a Netflix special or something. And he's, he's talking about phone batteries and he's like, you ever look at your phone and you see the battery and it gets down to a certain point and people are like, Oh my God. I gotta get to a charge my phone's about to die, right?

I gotta get to a charger. Help me get to a charger now. I'm not sure how much time I have left, right? He's just being very dramatic, but it communicates, and people get that, and I love that analogy when we're talking about Mido, because that's exactly how it is. It's just literally to the point with your body that you can't function anymore, and that panic level can increase a little bit once you get to that point, because like, what am I gonna do?

I got to get horizontal. I got to strap into my ventilator, my breathing machine. And I've got to just try to recuperate the best that I can, even though I won't get back to that full charge. That baseline is constantly shifting and shuffling, which is one of the other challenges that I have. But it's a really effective way that I found to communicate some information to folks that aren't quite familiar with Mito.

Jessica Fein: Even with [00:19:00] that baseline shifting, you continue to be out there. You continue to travel. I mean, the last time that I saw you, you were in Boston. which was a travel free event. And you're going to be heading to, I think, San Diego, right? Very soon for the rare symposium. So what is that like? Because look, a lot of people don't like the hassles that come with travel anyway.

But when you are talking about traveling, not only when you are concerned about your own physical health and safety and all of the equipment that you need to bring with you. And I know you've had some real challenges. How do you continue to do that and to get yourself out there and to travel with all of those issues?

Adam Johnson: Well, I feel like it's a real perseverance type situation, right? Since I lost so much of me, Because that's what I was doing. I was traveling. I was presenting at conferences. And in fact, the last time that I was at a national conference presenting in my role as an educator, I was in San Diego. And it was almost poetic that three and a half years later, last year in [00:20:00] San Diego, it was the first time that I was back on a stage and speaking again in front of people.

In the same town, right near the same venue where I was speaking before it was incredibly emotional for me to do that, to get kind of back on the horse, so to say. And I feel like it for me was just this culmination of all of the emotions, all of the time and effort and energy and the things that have happened along, not only the diagnostic odyssey, but then what happened after that, because the pandemic was at its height just months after I got my diagnosis.

So I went from kind of this own personal pandemic phase where I was taken away from and isolated from my team at work, the people that I was managing, the people that I was helping, to by myself, really trying to just push through and navigate. And I didn't know how to do that. And then. Lockdowns came and we were isolated and with my respiratory components, I've got to be careful with some of those things.

So it was really this challenge and I kept finding more and more people in the rare disease community who said, [00:21:00] Man, you've got to get to one of these events in person. It is life changing. When you can be able to look people in the eye and get a hug and say hello. It really changes things. These relationships that you've built online are fantastic.

And I agreed. And I looked forward to it so much. And then the time came when I was like, man, I can, I can do this maybe like, well, okay, let's try it. And then for some reason, Global Genes accepted, you know, my application to come and speak and probably against their better judgment. They were like, okay, come on down.

You can try it. 

Jessica Fein: No, no, I can attest because I was there. 

Adam Johnson: Well, I appreciate it. Again, imposter syndrome set in again, where it was like, I don't know if I can do this, but I wanted to prove to myself that I could. That is a big part of what that trip was. I flew by myself. I tried to navigate by myself the best that I could.

It kicked my butt, but I did it. And I was really proud of myself. putting it out there and doing it. There were challenges. There are challenges. As my disease progresses here a year later, I am nervous about how it's going to go this [00:22:00] time around. In the back of my mind, I'm wondering, is this the last time I can do this, especially like on my own?

Jessica Fein: And then you also end up having to hope that the things that are outside of your control. I mean, you can prep as much as humanly possible, but then there's, you know, an airline saying, I can't bring the scooter or, you know, those kinds of situations that you've dealt with. So that's just yet another added layer.

Adam Johnson: Yeah, absolutely, and it can be so challenging and that's one of the things that I really struggle with when it comes to advocacy is How do we just solve these seemingly? Unending amount of problems that arise right like things that I wasn't even aware of before and I feel like Especially with this, you know progressive nature of this disease and how I can see myself Losing different abilities over the course of time, I feel this immense pressure to get it all done, right?

Like I want to change these things. I want to do these things. And then something comes up out of the blue where you are refused service [00:23:00] on an airplane because of your mobility devices. And I'm going, this just isn't right. And so then I've spent the last six months and just finally got some quote unquote resolution with the airline yesterday.

Jessica Fein: Oh, congratulations. 

Adam Johnson: Yeah, I mean, and what, what the hell? Why did it take so long? 

Jessica Fein: Right, and why does that need to be a congratulations? It should just be a like, of course, it shouldn't have happened in the first place. And then there should have been something right away. 

Adam Johnson: Yeah, that's just one example of different things that pop up, right?

And what are we going to do about them? How are we going to navigate those things? 

Jessica Fein: Some of the other things that we navigate and that you and I have talked about a fair amount are hope and grief. Mm hmm. So, let's start with hope. Yes. How do you balance being hopeful, both for yourself and for your family and with your children, with acceptance?

Adam Johnson: It is quite a balance, and there's a hoodie that I have from MitoAction that I ordered on the website that says, Hope, Fight, Cure. Hope needs to come first. Right? Because without that, then [00:24:00] what do we have now? That doesn't mean it can't be challenged at times. Right? And I'm in some situations, especially recently when I'm trying to get into clinical trials, keep running up against roadblocks or get denied for various reasons.

Those are times when the hope is really challenged. It's incredibly difficult. And we've got to continue to move the ball forward. We've got to continue to do what we can to press forward with the hope that eventually the science will catch up, that we will get to a point where we have that. Without it, we're kind of stuck.

I don't try to frame that in a toxic positivity type way, but it's got to be there. I've got to be able to look at that and navigate it. And it's easier said than done at times. In terms of working through that with, you know, like with the family, with the kids, a lot of what I do is to hopefully show the kids that despite these situations, despite these circumstances, I'm still out there trying, whether that's through advocacy or just navigating the day to day life, and both of those things can be incredibly challenging, but that hope is something that we've got to hold on [00:25:00] to.

Jessica Fein: So the other side, grief, there are so many kinds of grief. This is something that I've learned more recently, having experienced a huge amount of quote unquote conventional, and I know there's nothing conventional about grief, but you know what I call hallmark card grief. Losing my sisters, losing my siblings.

Then there's all these other kinds, right? There's anticipatory grief, there's ambiguous grief. And I think these are things that play such a major role when dealing with a progressive illness. And that's really where I first encountered those kinds of grief, of course, with Dalia. How do you experience it?

Adam Johnson: Yeah, it comes in stages and ebbs and flows. And when I say stages, I don't mean it to sound like the check the box. I'm done with this. I'm moving on to the next one because I found that to absolutely not be the case. We've talked about that before. It's not linear. It's not something to just be checked off and you're done with this one.

It comes and it goes. I feel like it's a [00:26:00] continual grappling of sorts for me. And the biggest point that was helpful for me was actually figuring out that I was grieving because I had always associated grief with death. And I was listening to a Brené Brown podcast when she was talking with David Kessler, and it was right in that pandemic phase, like March, April 2020.

And they're talking about this and society as a whole was collectively grieving. Yet did we have the language to wrap around that? I didn't have the language. And that was my aha moment, not only grieving what was happening worldwide, but grieving what I was experiencing as well. I recognized at that point in time, I was grieving the life that I had before the life that I had at the time.

And the life that I thought that I would have moving forward. And so some of those instances are the biggest ways that I experience grief. And especially recently, the next biggest way would be with some of the secondary losses. And I know that you have written about some of those things. There's a great [00:27:00] piece that you have in Psychology Today that I bookmark and have and people should go and read and check it out.

Some of those secondary losses that just hit you at the most random and inopportune, not that there's ever an opportune time, but like, you know, just the most random times. And you're like, man, what is going on with this? And it just kind of flips the switch to where you're right back into it. And I really struggle with that, especially when it comes to losing friendships or folks that you used to lean into or lean on.

And then all of a sudden, they're just not there anymore. That's one of the most difficult things for me. 

Jessica Fein: I totally agree. And it's so surprising, right, because you think that these people who will show up, you know, some of them just don't, they just don't know how to. And then the flip side is people who do show up and who are present in such gorgeous ways that you never would have anticipated.

Adam Johnson: Yeah, yeah, it is quite a delicate balance and the hope there is to have those other folks that do step in or step up in [00:28:00] various ways. And I also want to acknowledge anybody that might be listening or experiencing things where that hasn't happened or hasn't happened in the way that you need it yet. I'm hopeful that it will for you.

I know that there's been times for me when it doesn't feel like that need is getting met and those can be one of the most brutal times because then it's grief on top of grief. And Megan Devine talks a lot about that, how some of those real secondary type losses can be ones that sting the most even, right?

Jessica Fein: Definitely. And I'm so glad you brought her up. And she's just so remarkable. And so again, I'm going to put a whole resource list out in the notes, because Megan Devine, if you're not familiar with her, and are listening to this, is somebody who writes so insightfully about grief in its entirety, and I think has a really original voice and point of view.

The good thing is that I feel like what she is writing and speaking about is definitely permeating. I mean, her name comes up a lot, so hopefully she really is making an impact in some of the discourses changing and the understanding. 

Adam Johnson: Yeah, I agree. And I think it really [00:29:00] is. It's like, you know, grief and mental health.

Some of these things are starting to become a little more mainstream and we're having some of these discussions and we've still got a long ways to go. But the work of folks like Megan and the work that you're doing, the writing, the pieces that you do and the speaking that you do around the topic, it's really incredibly helpful.

And I definitely would encourage folks to seek out Megan's work as well. It's incredibly helpful for me. I don't know. It's just this wonderful way to frame things. And again, you and I have talked about this and some other forums before. Yeah. Yeah. Yeah. Jessie, where you're going through and experiencing grief from your experience with Dalia and seeing her go through Mido and losing her, and I'm going through it in this other way of feeling like I'm losing myself and where I am, and it's these two separate situations.

But I've just found it so comforting and helpful to be able to talk to people like you, and especially you, around this topic. And we can kind of find some different areas like, this is how I'm experiencing this grief. What's it like for you? Have you thought about it like that? No, well, it's [00:30:00] different for me, but similar in this way.

I don't know. There's something about it that's just really comforting to me to be able to have somebody to have those discussions with and those thoughts with where even though we're in these completely different scenarios and situations, we can still kind of come back together. And Megan Devine talks about how that's like, it's not going to solve anything necessarily, but it helps.

Jessica Fein: It helps, and I feel the exact same way about you, and it is so interesting how the details of the journey are so different, even though the culprit is the same. And yet, listen, I'm right there with the person who said you are not a former teacher. Yeah. I learned so much from you. Are there misconceptions or stereotypes, as we're in Mitochondrial Disease Awareness Week, misconceptions or stereotypes about rare disease that you want to address or clarify as people are thinking this through?

Adam Johnson: It's not the end of you is a big thing that I think that could be a misconception, at least it was for me. I did think it was the end of me and it's not. One [00:31:00] interesting thing that really helped me along those lines, Jessica, was Michael J. Fox's book, “No Time Like the Future.” There's so many different points as I'm looking for another connection, another dad that's kind of navigating these things.

Again, different conditions, different situations, but I just lean into it so much. And there was one part of his book where he talked about how being an actor, working as an actor, did not define him. And I just paused at that one and really reflected on that. Because You know, what do you think about the first time you hear Michael J. Fox, right? Like Family Ties, right? I mean, you're going Family Ties or you're going Back to the Future, right? Like it's his acting. And yet he had the perception, the awareness, and it makes complete sense. Now, when you think about it, right? Like, yeah, acting doesn't define me. You're not your condition. Right?

You are not your circumstances. And, you know, the, the name of your podcast, I don't know how you do it. Those things are not you. What makes people say, I don't know how you do it are not what defined you. You know, I [00:32:00] did feel like this disease losing in my career was the end of me. And until somebody told me it wasn't, and I first didn't believe them, I've come around on that thing.

So I think that that's maybe one misconception that could be out there. And another one that I think is important to address is just like there's no right way or set way to grieve, there's no right way or set way to proceed once you're in one of these situations. Not everybody needs to be out there, you know, writing a memoir.

Not everybody needs to be out there doing a podcast. Not everybody needs to be going to conferences and speaking. And these are all things that I've thought that I had to do or I needed to do. I've kind of put this internal pressure on myself. You know, you do all these things, Jessica, and maybe somebody else has a skill set that is different than yours.

Or maybe somebody else takes a little longer to process things or put it together. I want to encourage everybody to not feel like they have to fit inside a mold, to fit inside a box, right? We need everybody to [00:33:00] contribute in whatever way predefined.

You know, set of preconceived notions that are out there in whatever way it is. We need the scientists, we need the researchers, we need the fundraisers, we need the storytellers, we need the podcasts, we need all of them. Don't feel like you have to force yourself into one of those boxes, especially if it's something that you're not ready for, at least at that point in time.

Jessica Fein: I'm so glad you said that one of my best friends, a lifelong friend lost her son 18 years old, almost exactly to the day one year before Dalia. We were having a meal recently and she said, I feel like I'm failing at grief. So what you said just now is so important. There's no failing at it. There's no succeeding at it either.

It is. And it's going to look different, not only person to person, but also day to day for each person. And maybe sometimes hour by hour, and there's no right and there's no wrong. And you certainly don't need to be public. I think that that's a [00:34:00] really good point. Some people that helps them, that helps with the processing.

It helps them keep their person close or whatever it is, but some people that's not their inclination and that's fine. 

Adam Johnson: Yeah, absolutely. And the other thing is, is you don't know what your work or what you are doing, how it might influence or help somebody. I spoke to somebody not too long ago that said that they had found some resources that somebody else provided.

They found it online, and they were really thankful for that. They don't interact with this person. They've never spoken to them. They've never reached out to them. That person doesn't even know that they exist. Yet, the work that they are doing has made such a profound impact on this unnamed person that I'm speaking of, right?

And I was kind of grinning from ear to ear when I heard about that, because you don't know oftentimes what you are doing or how you are doing and how it might help somebody who's going through something else. And both people in that scenario are better for it, right? The person who chooses not to [00:35:00] interact, chooses not to be public is getting what they need.

And the person who is putting the information out there is in some way getting what they need and they're both really supporting each other, even though they don't necessarily know about it. I thought it was kind of beautiful. 

Jessica Fein: I love that. And it is interesting. It goes back a little bit to what you said at the beginning, which is if you're not findable.

It's going to be hard to make the connections. So it is a balance because if you don't want to be public, but on the other hand, you want to make the connections. I mean, I went through a real eye opening with that many, many, many years ago when I was going through infertility and I was so private about it and I was so alone.

Yeah. Yeah. I tell anybody. I mean, I thought this was like the single most personal thing. Why in the world would I tell anybody? 

Adam Johnson: Yeah. Yeah. Yeah. Exactly. 

Jessica Fein: It took a long time for me to be comfortable. Yeah. Being open and sharing the most personal things. 

Adam Johnson: Yeah. And that's a, that's a great point as well. And as we're talking about these things, I even still grapple with it just because I'm like, in my mind, these things just seem so [00:36:00] contradictory.

Right? Like I started out saying, Oh yeah, you got to become findable. But if you don't want to become findable, don't become findable. The word that comes back to my mind all the time with life with a rare disease is paradox. I think you helped me frame this the first time before I knew you, before we'd ever talked or communicated.

You talked about joy and sorrow living together. And I think Effie might have helped me find that or put words around it. And it was just this like, mind boggling, incredible moment for me to realize that that's possible. Because it doesn't seem like it's possible. Those are seemingly contradictory things that happen.

And You know, I talk Brené Brown all day, every day, and she talks about the paradox really being the mark of a wild heart. It's those times when you need to be tough, you need to be tender, or you are excited and you're scared, you're brave and you're afraid, and it's all in the same moment. And you're just like, how does this work?

How does this happen? But it's [00:37:00] really about she, Brené Brown talks about it's showing up in your vulnerability and your courage and you're being fierce and you're being kind. I feel like we need Alanis Morissette to have, like, Hand in My Pocket be the, like, unofficial song of rare disease, maybe, right?

Like, because that could be our anthem, like, sad but I'm laughing, I'm brave but I'm chicken shit, right? Like, I mean, I'm sick but I'm pretty. Like, and she, and she says it, right? She says it in, in the song. She's like, what it all comes down to is nobody's really got it figured out just yet. And that's why I love this podcast that you're doing too, by the way, Jessie.

It's fantastic because you're out there trying to find this stuff. Let's figure it out. Let's talk about it. Let's get this stuff out there. So I don't know. There's my little paradox speech, I guess. 

Jessica Fein: I love it. I love it. And we got to reach out to Alanis Morissette. That is absolutely going to be the theme song.

Adam Johnson: Once you get the answers too, then maybe she'll write us another song. Yes, exactly. 

Jessica Fein: We'll see. Yeah. All right. Let's talk about somebody who I know is a hero of yours and somebody who I admire so [00:38:00] much, your daughter, Emma. Please tell us about her and the amazing stuff she's doing. 

Adam Johnson: Yes. Well, Emma is my now almost 14 year old daughter.

She is a fantastic human and I want to be like her when I grow up. She is just this phenomenal. Being, and she's done some incredible work to support the Mito community. The impact on her and my son when I was diagnosed is something that's at the forefront. And it's why the dadvocate moniker is there at the forefront as well.

Because when I heard those initial words, mitochondrial myopathy, mitochondrial disease, my first thought is, what about my kids? Right? Like, are they going to be impacted physically? Is this something they're at risk of? Is this something that we need to be on the lookout for? And then how are they going to process this emotionally?

At the time, Emma was 10, Spencer was 3. And I'm trying to figure out how do I tell them about my diagnosis? Because Emma, specifically, is just the sweetest kind of soul. And anytime [00:39:00] there is any kind of uncomfortable pain, discomfort for somebody else, she does not like it. And it hurts her soul. I was really concerned about that.

So I leaned into my teaching prowess, right, remember I taught fourth grade, she was in fourth grade when this happened. So I was like, okay, how do I tell her? And so I used my teaching hat and I tried to put things into kid friendly language and told her about it and she was just really quiet. And she was really trying to soak it in and figure it out.

And I didn't want to push her too much. And so I kind of waited and was looking for cues. Well, she came home from school one day, a couple of months later, and she said, dad, we're going to do a science project in class. And my teacher asked us to choose a part of the body to do some research on and to present it.

And she said, mitochondria is not on the list, but I asked her if I could do mitochondria and muscles so I could teach my, and I was like, okay. That's my cue. She's ready. We're going to dive in. We're going to find some resources that we're both able to comprehend and process and she presented to her fourth grade peers about mitochondria.

And that was the beginning [00:40:00] of this journey that she's taken to advocacy. And it's been incredible for me to see. It's one of those, again, a paradox is equally like proud moment and heartbreaking moment all at the same time, right? Like my heart breaks that we're in the situation where she has to do those things.

And I couldn't be more proud of her for the work that she's done. Thank you. The next year in fifth grade, she was doing a passion project and her teacher supported her through the process where she tried to decide what to do for this project. And she decided, well, I like to bake and I like to help people.

My dad's got this mitochondrial disease thing. And so she put together recipe for these fantastic red velvet cupcakes with cream cheese frosting that are like. To die for she built spreadsheets and price analyzed everything to see how much it would cost to do this. She looked to see what resources she would need to provide.

She built some brochures. She talked through some things, got help from people to put together a presentation and presented it to Kira, the CEO of Mitoaction and said, would you like to [00:41:00] partner with me? So I can raise some money for mitochondrial diseases. I want to support these four programs that you have.

And Kira was all over it and has just loved up Emma since the moment they connected. And I just am so thankful for their relationship that they have. Yeah, so Emma's been raising funds for the Mito community for the last couple of years through Another Helping, which was her name for Emma Makes and Bakes for Mito.

So, yeah, so for the last couple of years, she's been raising funds for various programs in the Mito community, and I'm really incredibly proud of her and grateful for the work that she's doing, and I'm excited that we are able to announce her next fundraising endeavor. Can we share that here? Are we good with that?

Are you ready? She was thinking she wanted to switch things up a little bit. She raised over 5, 000 between the Mito Santas program, the Matthew Hardy Camper Fund, the Marcells Way Family Fund, and for general education advocacy and awareness. And we're going to be rolling this out on her Instagram at Bake for Mito, [00:42:00] my Instagram at Rare Disease Dad.

And she is going to be supporting and raising funds for Dalia’s Wish moving forward. She has a goal set to raise 5, 000 to send one family on a trip of a lifetime. And I know that is a big memory for you and for your family, Jessica, and I am so thankful that you and your husband are letting Emma do this and joining together with us.

She's really excited to raise some funds. It's going to look a little different because she's in junior high now and She's got the dances and the volleyball games and the homework and all that, but she's gonna maybe do a little less baking, but still she's going to try to raise some funds. And so we're looking forward to her meeting that goal.

Jessica Fein: Well, I don't even know how I'm supposed to continue on after that. So first of all, I hope that I get to meet her, that she's doing this for Dahlia's Wish and the way that our girls are together in that way is so paradoxical, so beautiful and so heartbreaking. So anyway, like I said, you are not a former teacher.

You are a teacher and not only what you're teaching people in the community and [00:43:00] teaching people from stages, but what you're teaching clearly to your children is so powerful. Thank you for doing everything that you're doing. Thank you for being my friend and thank you for being on the show. 

Adam Johnson: It's my pleasure.

Jessica, you're the best and keep at it. We love you. We support all that you're doing. We are excited to partner with Dalia’s Wish and I'm just so thankful for you as well. You're the best. 

Jessica Fein: Here are my takeaways from my conversation with Adam. Number one, in order to be found, you have to be findable. It might mean putting yourself out there in ways that feel a bit uncomfortable, but the rewards can be life changing.

Number two, Your diagnosis is not the end of you. You are not your condition. Number three, there is no right or wrong way to proceed, whether that's with a diagnosis, with grief, or with anything. Number four, what you are doing or how you are doing it might be helping someone you don't even know. Number five, The paradox is the mark of the wild heart.

It's about showing up in your vulnerability and your courage. Number [00:44:00] six, you are never too young to make a meaningful difference. Just look at Adam's daughter, Emma. And number seven, Alanis Morissette, we are going to find you for our theme song. 

I hope you enjoyed this episode. We'll be dropping another episode this Thursday, talking more about mitochondrial disease from a different angle.

If you want to learn more about the people who are on my show, find out what books I'm reading, and follow me along in my book publishing journey, definitely sign up for my newsletter, Jessicafeinstories.com, Jessicafeinstories.com. Thanks so much. Talk to you next time.