Meet Marie Conley: Keynote Speaker for the 2026 CAAP Conference
ThinkingCAAP Rewind!
In this re-release episode of Thinking CAAP, Beck Moore reaches back into the archives for a timely conversation with Marie Conley, founder of M Conley Consulting and an upcoming keynote speaker at CAAP’s 2026 Annual Conference, Mission Possible.
Marie joins Beck Moore and Heather Holloway for a conversation about leadership, workplace culture, empathy, health advocacy, and what it means to live a “point-worthy” life. She shares how her nonlinear career path shaped her work as an HR anthropologist and HR archaeologist, giving her a unique lens for observing people, leadership, and the hidden dynamics that shape workplace culture.
The conversation also explores what strong leaders do well, why administrative support and onboarding are often undervalued, and how small, intentional acts of kindness can create meaningful engagement across an organization.
Marie also opens up about her rare disease diagnosis, her experience with Cushing’s disease and adrenal insufficiency, and the way that journey changed how she understands energy, boundaries, purpose, and empathy. Her “point-worthy life” framework offers a powerful reminder for leaders, caregivers, and human service professionals: every decision, relationship, and responsibility uses energy, and we have to be intentional about where our points go.
As CAAP prepares to welcome Marie to the main stage in Lancaster, this archived conversation offers a meaningful preview of the perspective, humanity, and wisdom she brings to conversations about leadership, connection, and showing up well for the people around us.
For more from Marie Conley:
LinkedIn: https://www.linkedin.com/in/mconleyconsulting/
Website: https://www.mconleyconsulting.com/
Conley Cushing's Disease Fund: https://kickcushings.com/
IMAGE DESCRIPTION: Promotional graphic for the 2026 CAAP Conference, “Mission: Possible,” presented by PA Health & Wellness. Blue and magenta lettering appears on stacked manila folders beside a photo of keynote speaker Marie Conley, a smiling blonde woman wearing a white shirt and gold jewelry.
Episode 46 Talking Points
[00:00:00] Welcome Back, Marie Conley
Beck introduces this archived conversation ahead of Marie’s return as a keynote speaker at CAAP’s Mission: Possible Annual Conference.
[00:01:08] Introductions and Marie’s Background
Beck and Heather welcome Marie, founder of M Conley Consulting.
Her work spans workforce engagement, leadership, communication, and rare disease advocacy.
[00:03:47] Finding the Potential in People
Marie describes how her nonlinear career shaped her perspective as an “HR anthropologist” and “HR archaeologist.”
She looks for overlooked strengths and potential, reminding listeners that leadership doesn’t always come with a title. Beck reflects on her impact on his own confidence.
[00:11:15] Great Leaders Help Others Shine
Marie explains why strong leaders surround themselves with talented people and make intentional time for connection.
Helping others succeed requires pauses, attention, and relationships that can get lost in the pressure of daily operations.
[00:14:07] Building Trust in Executive Support
Beck shares how his executive assistant helps him lead more sustainably.
He and Marie discuss clear expectations, trust, and learning to fully use support rather than carrying everything alone.
[00:18:01] Marie’s Rare Disease Journey
Marie shares the symptoms, unanswered questions, and years of self-advocacy that led to her Cushing’s disease diagnosis.
She describes how treatment and subsequent adrenal insufficiency changed her life, and why she now shares her story to help others feel less alone.
[00:26:30] Living a “Point-Worthy Life”
Marie introduces her framework for managing limited energy: every physical, mental, emotional, and intellectual effort has a point value.
With about 20 points available each day, she must choose intentionally where her energy goes.
[00:29:25] Boundaries, Empathy, and Emotional Labor
Heather connects the point system to leaders and human service professionals who give so much to others.
Marie and Beck discuss recognizing where energy goes, honoring people’s experiences without comparing pain, and remembering that emotional labor carries a cost. Nobody has infinite points.
[00:38:43] The Cost of Powering Through
Beck reflects on how exhaustion showed up physically in his own life.
Marie discusses listening to the body’s signals, while the conversation emphasizes replenishment, support, and making time to address health concerns.
[00:43:27] Making Health Conversations Safer at Work
Heather asks how leaders can help employees discuss health challenges without fear of judgment.
Marie emphasizes modeling openness, treating vulnerability with respect, and balancing productivity with humanity and support.
[00:47:22] Small Details Make People Feel Welcome
Marie explains how pre-onboarding and mentorship can reduce a new employee’s anxiety.
Beck shares CAAP’s use of employee “user manuals” to understand individual needs and preferences. Both encourage asking people directly rather than relying on generational assumptions.
[00:54:07] Two Types of Onboarding
Marie distinguishes job onboarding from relational onboarding.
Employees need policies and expectations, but also someone who helps them understand the culture and feel connected to the mission. Her “me survey” gathers personal details that make small, thoughtful welcomes possible.
[00:58:53] Recognition, Belonging, and Everyday Kindness
Marie encourages organizations to recognize everyone who contributes to a win.
She and Beck explore how basic kindness and intentional connection can help employees feel seen, valued, and less alone at work.
[01:01:10] Systems That Turn Care Into Action
Beck acknowledges that thoughtful intentions need practical support.
Simple tools, including prompts, note cards, and a recognition toolkit, help leaders follow through consistently and build a culture of appreciation.
[01:05:08] Health Advocacy and Holding Onto Hope
Marie encourages listening to your body, documenting symptoms, asking thoughtful questions, and practicing respectful persistence.
She cautions against unqualified advice and internet rabbit holes, acknowledging the complexity of rare diseases while encouraging listeners not to give up hope.
[01:10:22] Closing Reflections
Beck thanks Marie for sharing her story, expertise, and energy, and encourages listeners to connect with her work.
[01:13:22] Stay Connected With Thinking CAAP
Listeners are invited to explore the show notes, subscribe, and send Community Action questions to info@thecaap.org with the subject line “Thinking CAAP.”
Episode 46 Full Transcript
00:00:00
What's up everybody? This is Beck Moore, CEO of CAAP. And before we officially launch this episode of the Thinking CAAP, we're reaching back into the archives for a conversation that it feels especially timely right now. And so our guest Marie Conley, we're relaunching her prior episode because she'll be joining us again very soon, but this time on the main stage as our keynote to this year's CAAP Annual Conference, Mission Possible. If you've heard Marie speak before, you know why we're excited to have her with us. She brings a perspective that challenges us to think differently about leadership, about connection, the way we show up for people around us. And so, as we get closer to the conference, we thought that this would be the perfect time to really highlight and bring this conversation back.
00:00:41
So, think of it as a little bit of a preview of Marie and a reason to get even more excited about what she'll bring to the stage this October in Lancaster, October 26th through the 29th, the Eden Resort and Suites in Lancaster, Pennsylvania. And so if you haven't registered for the CAAP Conference yet, head over to the thecaap.org to learn more, check out the full agenda and get registered. And so now, enjoy or enjoy again our conversation with a good friend of mine, Marie Conley.
What's up everybody? Welcome to the Thinking CAAP.
00:01:12
I'm Beck Moore, your host. And with me today has been a while. I'm going to say that out loud, Heather Holloway, Holloway Media Services. What's up, Heather? Oh my gosh, I'm up. Hey. Yeah, great to be back. Thank you so much. I am so thrilled to be here. Thank you, Beck.
00:01:21
Of course. My pleasure. I was uh laying in bed last night talking to my wife about something and I went and she said, "Did you just burn?" And I said, "Yeah." So, I hear a sound effect, so I hope that's okay.
00:01:36
That's okay. That's totally okay. Totally fine. Really excited to be with our next guest, as I usually am, but this particular individual I've known for a long time. and we worked together in different capacities. Got to know through a a mutual friend and uh so excited for our paths to cross again and to be working together intentionally on a couple projects. And so we recently had coffee uh with Marie Conley who's our next guest today. And I was like, you know, we need to get you on the podcast. I shouldn't I haven't asked you yet. I should have asked you a while ago. And she graciously said yes. So thank you, Marie, for for being here.
00:02:08
It's great to see you. Thank you. So today we're going to be talking about kind of Marie's journey. And before we jump in, I'm going to have my fearless co-host do uh go through Marie's bio because she does such a better job when it comes to bios than I do. So Heather, take it away.
00:02:26
Thank you so much. Here we go. Marie, today's guest is Marie Conley, founder of Conley Consulting, a WBENC certified women's business enterprise that helps organizations strengthen workforce engagement and leadership through communication, empathy, and thoughtful strategy. Marie is a certified HR professional who often describes herself as an HR anthropologist. Can't wait to dive into that. Studying workplace culture from the C-suite to frontline teams to understand what truly helps people and organizations thrive. Her work is also deeply personal. After receiving a rare disease diagnosis in her 30s, Marie became a passionate advocate for resilience and meaningful human connection, founding the Conley Cushing's Disease Fund, and serving as co-chair of the Pennsylvania Rare Disease Advisory Council. Marie, we are so glad that you're here. Welcome to the show.
00:03:19
Thank you so much. I appreciate it. Dot dot dot. She's also just a lovely human and a fun person to hang out with. So, there's also that. I'll say that out loud. Well, thank you.
00:03:27
My pleasure. My pleasure. I'll take those things first over any bio. It's nice to also have a professional voiceover artist that actually reads your bio. You know, put Heather in my pocket to read my bio at speaking engagements. That would be great.
00:03:41
I'm there. I'm there. So, we have a bunch of questions we we want to ask. We're going to kind of start, I think, with the HR anthropologist discussion a little bit because I know Heather, that excites you, it excites me. I think all three of us are really aligned when we talk about the workplace culture pieces of this work. And so I think our first question for you is just really what kind of sparked your fascination with workplace culture and the human side of of organizations and just talk to us a little bit about that.
00:04:13
Sure. Um, thanks again guys. I'm I'm just excited to be here. Um I think you know my career path has been extremely nonlinear. Um you know I started out in um campaign work, moved over and worked in a governor's office for a period of time. Did statewide campaigns decades decades ago. Um then moved in to working as a consultant with some nonprofits. I became the director for the Children's Miracle Network um at Penn State Children's Hospital and then moved into my own consulting um practice and have had such a great opportunity to work on so many different things. Um, you know, I had the honor of working with Sue Paterno when everything was happening at Penn State and first they had hired me to start uh Coach Paterno's foundation. Um, clearly we all know what happened.
And one of the things that the family, but specifically Sue, uh, wanted to look at was the fact that there was this individual embedded within a college community and so many of his actions went unnoticed.
00:05:29
And so, working with an FBI profile, we became very much aware of, um, you know, a nice guy offender. And so uh we worked with um a pilot program with the Pennsylvania State System of Higher Education and I worked with a group out of Massachusetts and then we worked with many male survivor groups and we created a child sexual victimization program for higher education. And what was really important there that this wasn't embedded within a legal or an HR. So it was just this online you could click it. it was really about making sure that the people that are interacting with the community understood um what the signs were. Um so that was impactful and changed my life. And then I had the great opportunity of working with Girl Scouts and with QVC and then um things like working and creating a internship program for Hershey Entertainment Resorts.
and uh there it was based not only on the opportunity for students to come and work in the park but we created a 12week leadership development curriculum working with Shippensburg and um I think that pass and I'm probably forgetting a number of of different clients of course but it has allowed me such a unique opportunity to really observe so many different people in the workplace Um, many times we talk about leaders and there are a lot of leaders who don't have titles, right? So, I got to see those dynamics which I always thought was fascinating. I think the great thing you have the opportunity to learn is sometimes what great great leaders do but also the kind of leader you don't want to be.
00:07:14
Um, I've served on so many impact boards. I'm sorry. No, I was just going to say big time. I think most of us can say the things that we know that we don't want to do and what we don't want to look like. Like I became a teacher initially because I didn't want the eighth grade English experience that I had to happen again, right? Like I know the things that I feel so deeply or very much based on the personal experiences of the things that I never want to look like this person in what how they show up, you know.
00:07:46
And I I think I took so many of those different observations. So many times, you know, I maybe didn't appreciate at the time, but now when you're sitting at the back of the room and able to watch and listen and learn, which is what I always encourage younger generations to do, is um it allowed me to really look at workplace dynamics. Um I kind of joke too that I am an HR um archaeologist because one of the things I really like doing is taking those observations and then when you bring it into a workplace culture into team dynamics, there's so many um sparks about different personalities and different people that you know maybe go unearthed or are walked over. And what someone may look like, you know, this is just a rock or it's just some dirt. I I I feel like a gift that I have is finding that treasure.
And I think that's really a part of leadership, which is how do you make people feel seen and heard? And you know, kind of what my motto has always been is that I try to make big things happen by making the little things count.
00:09:03
Because they do. Yeah, big time. I know when we work together on a project, Marie, even our interactions, I think, you know, you what you said there, right? Like you find the rock, right? And I think you also help to shine the rock. Not to be too, you know, metaphorical here, but I think you really help like shine the rock and make it better than what it realizes it is.
00:09:29
And I know like even just the conversations that we had way back when, I don't remember how many years ago now, but you definitely gave me words of encouragement to believe in myself at a a pretty dark time in my life that I don't even think you you knew at the time what what you were able to do for me. So I'll just say that out loud. I'm going to get teeyed, so I'm going to stop talking about twice today about something else. So gonna not go there.
But I just I want to make sure to say that out loud because it's definitely I think you know just want to reinforce that that's something that you're definitely I know have done for me and others and I was I was a part of your leadership program with uh the student program that you talked about and it was I think that was such a remarkable thing to watch because you really created that program from the ground up and were really thoughtful about the things that you embedded within that program to help those those folks be able to speak to people within the community right here from a pretty varied group of professionals that otherwise they would not have been exposed to necessarily, you know, unless they were invited in the room. And the likelihood of being invited in the room is unless you have a really great leader is is a rarity, right? So, just will say that out loud, too.
00:10:40
A thank you. Wow. A I love that. Well, hey, listen to this. Back in 1998, I was a hero employee. I worked for Hershey Entertainment. I was a costume character and I wish I would have had your leadership program because I always felt like I was a leader, captain of the softball team or, you know, first chair in band or whatever. So, I'm curious in all the experience that you have in all these different workplaces, what do great leaders do?
00:11:15
I I think there's a a lot of ways you can parse that. I think of course you know many people think about leadership and they think about the programmatic and side that has to be accomplished. Um I think first and foremost great leaders surround themselves with better people and smarter people and aren't intimidated um or jealous of that.
00:11:39
Amen. And hallelujah to that. I I think the way we are in general as a society, there's so much emphasis on these small short sound bites about greatness. And people forget that it doesn't always have to be you. And I think, you know, back to your point before, um, if you can make, yeah, we're going with this metaphor, something more sh like something that was so dull and maybe no one even thought could sparkle and you make that shine in a way that not that that person just feels good, but they then go and find that rock and they polish it. I think to me that's that's great leadership. Um, and and I and as hard as it is, and I I've been in the position, whether it's sitting on boards or or working with clients, that I've had the honor of being around some really strong leaders.
00:12:43
I I think there's so much pressure to constantly move, move fast, move hard. um that intentional pause and and I joke because one of the the facilitations that I'll I'll work on is you know I call it like like red tape to red carpet like really small inexpensive ways to make readers create better engagement. Having a good administrative support that will help you be strategic in your scheduling like dear God two hours a month that is non-negotiable. That all you're doing is walking around and seeing your team and not picking up criticisms, but just how are you? How you doing? Taking an opportunity to engage. And it doesn't matter how busy you are. You have to leave that strategic intentional time to connect. And I think there's so much pressure on bottom lines and ROI and but that to me is is a very very important part of leadership.
You know, yes, you have the budgets and you have the HR and you have legal compliance.
00:13:56
There's all of that stuff. I want to believe that most people are in positions because they did that stuff. Well, it's about the connection that often gets lost the higher up you get. That's my observation. Yeah. And so shout out to Jennifer Lindsay who's my executive assistant who is just a phenomenal human. If you check out our LinkedIn we just did a feature article about her and just the work that she does. And you know she is I tell her all the time I was like I you know I would furlough me before I would ever furlough you to be clear. Like this place doesn't work without you. And I just had a conversation with her about because I just my schedule is just disgusting. I there's not even that's not even the right word for it. And so I there's no time to do any work, right? Like I'm always in meetings all of the time and that is not a sustainable practice in a Zoom world.
And so we had to when I, you know, came back from the holidays and we just sat down to do her review and we started talking about kind of the next year and really like what I needed from her and what she needs from me. And one of the things I just said to her, I was like, "We've got to get to a point where I'm not taking more than three meetings a day. That that has to be the thing." And that sounds crazy for somebody who takes probably 10 meetings a day, but I'm not doing anything well if I don't do that. And so she's just a phenomenal gatekeeper, right? Somebody who takes care of all the things. And I wish I could bottle her because if you've experienced her support, you know, you've never like there's nobody like Jen. And we call her Scooby-Doo affectionately because like if you can't find something, you say, "Hey, Jen, can you Scooby-Doo this for me?" And she does.
So I say that with love and respect in my heart. She is like just so good. So yes, I believe that in my core. I experience it on a day-to-day basis.
00:15:42
Yeah. What I love about that is Oh, I'm sorry, Heather. Did I interrupt you? No, no, no. What I love about that too is I think so many people underappreciate that role and it's something that I have always taught especially um when you know you talk about onboarding and new employees and and part of this came from the fact that I was 21 years old and I was the scheduler for the at the time the the governor of the fifth largest state in the in the country. And to me, part of my success was creating those relationships with the gatekeepers. And people come and go. Gatekeepers stay. And you know, I was raised to be respectful. I was raised to be kind. But man, being kind and seeing an administrative support team for who they are and what they are and what they do and not being dismissive of a title, which I think so many people make that mistake.
I mean, shame on them because sometimes at the end of the day, if two people need to get in the door and one is dismissive and the other isn't, guess who's getting in the door? So, well, and it's hard for it's it was hard for me to trust an exe. I mean, I've had past executive assistants, but I never really fully trusted them. But, so I think it's also like people have a tendency, I'm sure you've seen this, like they have a tendency to not be able to figure out how to get out of their own way and how to utilize somebody. If you can set up the rules of engagement for what you need, expect, right? And slowly lean into those things. It's easier for you to let go. It's easier for them to understand the expectations so they also don't mess up, right? So, like I think there's a means and way to do we could have a whole other podcast about that, right
And honestly, we probably should, Heather, so hold me accountable to it.
00:17:34
All right. I I want to make sure, Marie, to get into a little bit about your your personal journey because I think it's continue to evolve your outlook, if I can be so bold as to say out loud. Um, so, you know, your professional work, as we've kind of talked about, centers around empathy and connection, and, you know, I think your, like I said, your life experience has really deepened that. So you were diagnosed with a rare disease in your mid30s. Is that right?
00:18:01
Yes. Yeah. Um can you can you share a little bit about that moment and really kind of how it's continue to evolve your your outlook on this work?
00:18:11
Sure. So um again, thanks for allowing me the chance to even talk about this. I it's it's funny because I've just really come to terms and Becky, you were one of those people in my past that has made me feel more comfortable about doing that. And um part of that was, you know, I I didn't want to seem weak.
00:18:35
Um I also didn't want to seem like some martyr because I'm more than my disease. Um but I also recognize with the help of really good friends that um my journey can help others. And so when I was I moved over um to the Children's Miracle Network and um I noticed I was having bouts of bronchitis and pneumonia and strep and shingles and I was that weird person in the doctor's office that kind of got off on the fact that like when you got your forms like I didn't have to check off anything which I guess is like my karma because now I need basically like an encyclopedia to bring in with me. Um, so I I had a great PA um who was um I'm going to give Mike Federer a shout out. Um who was looking at things differently and saying, "Well, you know, let's check this, let's check that." Um I then started noticing some other unusual things. We were trying to have a second child.
That really wasn't working. Um, I blamed my husband because I was waking up at about 1 2 in the morning and like staying awake, like awake and then just starting to work. I blamed him because he was snoring and blah blah blah. Um, so I had that going on. I started gaining weight. Um, and I'd always been very health-conscious. I mean, I love me some cheese fries and nachos, but like, you know, still always works in moderation.
00:20:20
Who doesn't like some cheese fries, by the way? Well, Heather doesn't like cheese, which I think she's still a little bit of a death, Heather, but like the lack of cheese interest. I just anyway I'm not even hearing this correctly. So um Jesus there was you know I I I was noticeably gaining weight. Um couldn't figure that out. Uh, I was training for a sprint triathlon after having done two half marathons while being sick because I was like, "Oh my god, I really need to figure out a way to stop, you know, gaining weight and fractured my hip." And I never even so much as had a sprain. Um, and then just so many other things like I never really had acne and I was like a 16-year-old at Target buying like everything. So, I share all of this to say there were so many unusual symptoms, but why?
Oh, I was at the dermatologist for stuff, but like why would a gynecologist have any reason to think about like why I had strep and then why would a pulmonologist because I was having bronchitis and everything have to think that this has anything to do with this weird thing growing on the bottom of my foot? Um you know so eventually um you know jump ahead almost three years um my parents had come up for Thanksgiving 4 weeks later I walked in their door at Christmas and my mom started crying cuz I had looked that different that quickly. So when this started in 2009, I was, you know, about maybe 130 lbs. By the time of my diagnosis, I was 205. Um, in addition to everything else. So my doctor or my PA was trying to do everything. I had seen at that point probably about seven different specialists documenting everything. Um, which is a really big part of advocacy.
um and your own being your own self- advocate. Um and then he said, "We're not cutting this." Sent me down to Penn and went to a doctor down there. He was like, "This isn't us. I think this is, you know, endocrinology." I like I had done for the last three years. Look that up. Um, and when I got in there, uh, in June, um, of 2012, I will never forget I had a 5-in binder that I was bringing doctor to doctor.
00:23:01
And I look, I I was not a supermodel, but my vanity is what really got me diagnosed because like, screw this strap, you know, the strap, my fractured hip. I, you know, of course wanted a second child. this thing on my foot, whatever. Fix this weight gain. So, that's what I thought I was there for.
00:23:23
And when I was with her, she said, "Have you noticed any unexplained illnesses, brittle bones, and went through and I just started crying because everything she talked about I had had." And this was almost three years, a solid year of trying to get diagnosed. in totality 3 years of of all these different symptoms. So while I was there, she said, "I I don't want you to Google this after you leave," which is so hard.
00:23:57
Yeah. This could be this very unusual thing called Cushing's. And I had had two dogs with Cushing's. So I was like, "Am I going to have to go to the bathroom a lot? Is my hair going to fall out?" Like that was what happened to my dogs. Like what's happening here? And um at the time between um one out of every million annually were diagnosed with the disease. So pretty rare. Um you know was confirmed diagnosis within two weeks. Uh what it ended up being was a benign tumor on my pituitary that was sending messages to my adrenal gland to push out cortisol. So at the time of my diagnosis I was drowning in cortisol.
00:24:37
And your cells need cortisol to do its job. So every system was complicated, reproductive, you know, um, uh, bone brittleness, my hair was falling out, you know, every I I could no longer process um, and break down carbohydrates, proteins, and sugars, everything. So, um, the there's no cure per se. Uh, the only way was to do a brain surgery. I did the brain surgery.
00:25:04
Unfortunately, that failed. Um, at that point, I became even more sick. Jump ahead 7 weeks, had to have my adrenals removed. So, that caused a secondary rare condition called adrenal insufficiency. Um, and then since there, it's the gift that keeps on giving. Um, you know, there's actually, I think, more R&D dollars that go towards curing Cushing's for dogs and horses than humans. Um so it's a long story but it's not uncommon for a lot of rare disease patients. Um and you know through there I had to live truly a whole new life. Um subsequently then I had to have a surgery to remove part of my lung. I had to have a hernia fixed. I had to have a full hysterectomy and bilateral oophorectomy. I've probably been in and out of the hospital over 50 sometimes. Some of those are hospital stays as well.
Um, and again, my parents raised me to be kind and empathic, but this created I I I joke um that I wish God could have been more subtle, but I am I'm really lucky because I live with no regrets. I also had to live my life very differently. I call it living a a point-worthy life. Um I couldn't really figure out and I I remember oh I can't remember her name. Patty Matty one of the that I remember when she when you guys were interviewing her there were so many similar things that she had shared as well but um just in the way that she looks at life. But it was very hard for me to share with friends and family how I needed to live my life. And so everybody kind of understood the Weight Watchers, you know, point program. And so like everything has points. I had to learn um through some really hard trials and tribulations that everything that I do as a human now has a certain level of points.
And it's not just physical, it's also my mental capability, my intellectual capability. Um the, you know, when someone's like, "Don't worry, your, you know, your adrenaline will kick in." No, no, mine doesn't. Um, you know, I'm like, "You're wrong." Like, gotcha. Um, you know, things like this, when I talk about being point-worthy, something like this is, um, like 10 points for me. Um, I only have 20 points a day. So this forced me to live a very point-worthy life. It's made me have to make difficult decisions about what is worthy of my points and how many things in my life did I give points to that weren't worth it. Um it's allowed me to re-evaluate at different times when my son was younger. He was younger when all of this was going around um or or happening. my points at the end of the day had to be for him. So therefore, everything else had to be altered. Um, now he's away at school.
Um, you know, my points are important for my family, but most importantly for my clients. And and I don't mean that. I mean it because I love what I do and I want to make sure that whatever I do, I'm giving my very best of. But it's also forced me um I think in a very intentional and I'm a very grateful person that what is in my life now is point-worthy and you know even my friends and Beck does it too like I hope this isn't taking too many points or I don't know if this is point-worthy. Um but it's also forced me to have to let go of some things in my life people and things that didn't protect my points. Um, you know, it wasn't like an intentional conversation calling someone and being like, you know, protect my points, peace out, but it's that extraction. Um, and it's a it's a litmus test for me. Um, you know, and I Oh, I'm sorry. Go ahead.
00:29:23
No, no. I just want to make sure to say thank you for spending your some of your points on this discussion because I think it's so important for people to understand and I think for people to hear your journey because there's I mean, as we were talking about before we hit record officially, I think there's so much intersectionality. I was just talking to Carlo actually about this this morning, Heather. Um, around kind of the intersectionality of who we are as people is so much more diverse and far more deep than what we really I think understand when we first meet somebody for the first time. And I just I think sometimes that's lost because we get scared about sharing a story, right? We get nervous for whatever reason. I mean, you know, thank you for saying what you said about your your vanity. You know, it's I joke around all the time, right? like I'm starting to lose my hair.
I am I don't like I just started to transition into this person that I finally recognized for the first time and now I've got dad bod and I'm losing my hair. Like and it's not the same and it's not the same to be clear, but right like I think there are there are so many pieces of all of this that I think are just important for people to hear and sharing your story. I'm just so thankful for your willingness to. So I didn't I'm sorry to cut you off. I didn't No, no. And and to add to that, add to that really quickly. Uh this is so fascinating because you you already said it, intentionality. I mean, you are so intent on using the points specifically on purpose and you're giving us permission, all the social workers out there, all the heart-centered empaths out there, that we are allowed to put boundaries up. We're allowed to put guide rails on our time and our energy.
We're allowed to do that. And we don't have to face a near-death experience to get there. Listen to my friend Marie.
00:31:10
She is giving you the roadmap. So, so you said what 20 points a day. Is that the Yeah. And it's it's funny because I again just starting to do this and and talking to Beck about it. I I probably have given like five or six speeches now with different groups, leadership groups, because I've really transformed this into how I how I feel this is important for the pillars of purpose and um and empathy and energy. And I actually do like an exercise in there because I'm a very tangible person for people to understand what their points go to. Um, and I think as leaders that, you know, when you do some of these exercises, you're putting down on a daily basis.
00:32:01
It's so funny. I had one person who came up to me afterwards and he said, "I had 85 points." And I said, "Okay, so now you have 20 a day. Where where are they going? What are they doing?" And it really forces you. And again, I don't want someone to have an eight hour surgery with two surgeons and four hands up your nostril and 12 holes in your belly to learn what I've learned. And I want to believe that I would have come this way, but I I wouldn't have. I think I was always, like I said, a good person, but this lens and this intention has forced me to be very strategic. Um, and Beck, it's funny when you said something about your hair.
I think that's the other thing that's so important not just with rare disease diagnosis but everybody's journey is their own journey right and I think a lot of times people try to say like and that's why I think I had such a problem talking about my disease because I didn't want someone to say I know it's not as bad as yours or I didn't go through what you went through but what you went through and I learned that when I was at Children's Miracle Network because the the gift that I was given to watch families interact with these kids and I remember you had some of the most extreme illnesses and then you would have a parent who, you know, was giving their son away on a stretcher to two doctors they didn't really know because they had to put in screws and they were like, I know this isn't like everybody else.
I said, "No, like this this is like everybody's experience is is theirs." And I think again going back to leadership, how can we help people figure out that it's real and that they deserve to feel these emotions? Now, I do think as leaders too, it's important sometimes to make people realize through that lens of empathy that some people may be experiencing things in a different way. Um, you know, and I when I work, especially with generational communications in the workplace and you know, I'm I'm working on a college campus right now. I I think there is a tendency sometimes for younger generations to want to die on every hill, right? Everything is an atrocity. Everything's an affront. And you can only die on the hill once. You can be bloody. You can lose a limb.
But you know, and I think that's part of this awareness too when people are dealing with their own things, whether it's a chronic illness, whether it's repercussions of, you know, symptoms that are coming from different drugs. Everything's real.
00:34:53
Yeah. Well, and pain is relative, right? I can't I'm not in your body. I can't understand your experience other than what you tell me. And just like you can't understand my experience, right? Absolutely. But I think that's part of sometimes we get into this habit of right like oh which is which is worse?
00:35:10
Oh, you know you I you shouldn't feel bad about this because I've had it this bad. And I just that's you know I try not to cuss on the podcast so I won't say what I'm really thinking but that's that's crap. But it's it goes back to kind of right like this empathy muscle that sometimes we don't stretch and we don't work out and we kind of forget, right? But I I think the other thing about kind of what you're you're talking about is also some of the ROI of relationships and boundary setting that is hard for me. I will openly admit as somebody who experienced a lot of trauma and family dynamics.
00:35:44
It's hard for me to set certain boundaries with certain people because, you know, I or why I take the meeting sometimes with somebody who I I know that there's not a lot of ROI there, but I'm giving my points. And so that's part of what I know for me and is important for leaders right now and particularly for those who work in human services more because the burden of the work is so heavy right now, more than it's ever felt. I was just talking with a potential, you know, keynote for a conference we're going to be doing and I just said it was like the level of exhaustion that I can feel in the room with these individuals. And so that question of how are you spending your points, what what's the ROI, whether professional, personal, or otherwise is just so important right now. So so important.
Well, and especially with, as you just mentioned, you know, the the groups that are in front of you, the the clients, your your colleagues, you know, all all work has dignity and purpose. But I think what I had that I was forced to learn is that being in a setting and feeling someone's pain or or trying to help someone see the beauty of what they do can be as many points as me going down onto the Peloton and doing a 45minute workout. I have to live that way or I end up in the hospital. And I I've done that. I mean, it is I have I don't have the luxury of, you know, you healthy people who your brain's going to kick in to your adrenals and say like, just push out a little bit more cortisol to get me through. I don't have that. So, it's almost like I'm in I'm a car and I can only run on fumes for so long and then I'm it's called an adrenal crisis and then I'm in the ER.
Um, and I the problem for me is if I take too many meetings, if I do not, you know, every every week I I look at how I'm planning my points, you know, and if I don't, um, and I share this in in my remarks is that it was very selfish of me in retrospect because I was trying to prove that I wasn't different. I was going to be different than any other Cushing's patient with adrenal insufficiency. That's what the textbook said. They didn't know me. And I can rock this. And the problem is, I think sometimes when we push it, the person who felt it the most was my son because he was watching me crash and get rushed to the ER. He one time had to take me in while my husband was parking the car and I collapsed. And I I didn't know this until he wrote his essay for college, but he was screaming.
00:38:40
And this 10-year-old, no one got me out of the foyer right away, you know. So I think sometimes as humans as leader we don't think of the ripple effects of every single time that we give because when I do my point system and when I talk to people about their point system what is that thing what is that person what is that why that needs to have your points and you need to protect those because whether you have adrenals or not nobody is has an endless or an infinity amount of points. And so I try to weave that into everything I do, whether it's generational communications with empathy or whether it's doing my Clifton Strengths team building.
Because if I can take my experience and allow people to see their worth, the protection of their time, and the impact it has on others, then maybe that's one of the reasons I don't want to I don't ever believe that God gives me something to teach others, but maybe it's the gifts that I've had before and how I can make this journey maybe a little easier for someone else.
00:39:53
Yeah. Yeah, I mean I I think that Heather and I both have talked about this before on the podcast and you know, but we'll repeat again. I think you can whether you have a rare disease or not, you can think, oh, I can just keep powering on. I think I can keep powering on. I think I can keep powering on. But as people who, you know, represent you, I talked about you two major injuries in a year, tearing my ACL, having to have knee surgery, breaking my arm because of passing out in the middle of the night. You like those things don't happen because you know it it was a reflection of how tired I was, how much I was forgetting to just like be intentional about just doing something really simple. you walk the wrong way because you've got your mind on 35 other things, you know, like it happens. Burnout is real and you can think you can keep powering on.
I can do this for one more day, but something it all comes with a cost. And I I'm a walking manifestation not solely because of stress but what cortisol does to the body every because I was drowning in cortisol and that is exactly what happens when you are stressed whether and and you know and that's the thing people can think that stress is an external manifestation it's internal before it presents itself externally. So every system in your body is affected by that stress.
00:41:24
Yeah. Well, and I I think that, you know, I am going to somebody right now to work on just kind of trying to heal my mind, body, and soul right now. And I think one of the things that she told me in one of my recent sessions was, Becky, you're somebody that leads with heart regardless of whether or not, you know, you're fixing something in your house or you're helping a client work through something or whatever. And she's like, and that comes with a cost to your soul, literally, right? See, you're always pouring out. And what's happening in your body is that your body is saying like, hey, tap tap, you need to pour into you cuz you don't have anything to pour in anybody else.
And I think that also comes with, right, a choice about, oh yeah, I'm going to take this health follow-up meeting or I'm going to, you know, I'm going to get the test that my doctor said or like I put off blood work for almost a year and a half and then I finally got my blood work back and they're like, oh, your your cholesterol is through the roof. Awesome. That didn't Yeah, there's some genetics playing out there, but that's also because of right like other health issues. And so I just am continually having to remind myself that this all comes at a cost. And when you are somebody who, to Heather's point, right, you're an empath, you're an empa empathetic leader, right? You lead with heart, however you want to describe it, you you're you're pouring more out than what you realize.
And so if you find yourself listening and you're like, you know, yeah, this really resonates with me, reach out to us. We're happy to put you in touch with some some other professionals that do work in this space. Um because I think it's when you are really right like servant leader when you work in human services there's so many of us who that is that's a reflection of kind of how we lead on a regular basis.
00:43:02
Well and I think you just touched upon too something that is you know a really important lesson that I learned and I try to share with with people is that importance of you know your own medical advocacy. I I think you know as people who tend to feel things deeply and put a lot of you know I think a lot of us do not just you know the three of us today but you know I was so dismissive of my symptoms like gh you know that's probably just because I'm a little worn out today or oh it's probably just you know because I was around somebody who was had a cold like you you know I blamed shampoo shampoo on my hair falling out. You know, it you you because it's not going to fit in your narrative and more importantly with busy people, your the time that you need to dedicate to just get your blood work done.
00:44:01
That is probably one of the most important things I try to explain to people is understanding and listening to your body because, you know, it's sending you the signals, right? You only get one, right? You get you get one. You get one and I may think that I'm Superman, but I'm not.
00:44:19
Yeah. Heather, do you I want to make sure you if you have questions because I know that we have a finite time with you this afternoon and I feel like I our conversation might go a little bit longer than what we have time with you.
00:44:33
So, if you have a question that you want to make sure to ask Marie, I want to give you the opportunity to. Yeah. I mean, this has all been fascinating. I want to jump in so much because I had my own health scare you know in 2022 which I speak on and it is exactly that I just stressed myself out so much uh that I developed a physical reaction to this stress and had I not contained it I do believe that I was on a one-way ticket to a heart attack I believe or something or something um so you know and and through a lot of mindfulness techniques through um you know reading and and taking care of myself uh I've I've been able plus medication. I mean, let's not be let's not fool ourselves because we're we're organic, but we're we also need tools. So, I use the tools um and have come out as a better leader, a better wife, a better daughter, all the things.
So, and and that and because of that, that was the origin story. That's how I live my life now. So, so I just so thank you for sharing your story. I guess the question that is percolating here is you know how do we create the environments to make it feel safe enough for our colleagues or our teammates or employees to come to us if they have a health issue. I mean it could be so taboo if they come to if if if a uh somebody comes to a leader and says hey I'm not feeling well I might have to go through this that could be a job loss.
00:45:57
So there's a lot of you know fear there. So, how do we as leaders create that culture and environment to say, "Come on, you know, talk to me." I I think sometimes, too, it's by example. And I think, you know, Heather, I I've I've heard you speak about it before. The the fact that you share your story means that it's it's okay to talk about it. And I think sometimes in the workplace, not think, I know in the workplace, you know, especially those of us that I think are like more of that Gen X where you went into the office sick, you know, you I always call it the George Costanza, that one episode where like he would park his car all the time and then sleep underneath the desk so that everybody thought he was the first in and last out. And I think that very much for especially Gen X in a generation where you know we are all predominantly in more leadership positions.
00:46:57
It's something that we need to learn from especially Gen Z um and even Gen Alpha coming up that mental health is real and taking care of yourself and um having a a balance in your life is not a weakness. And so um you know and then there's the balance, right? like you need people to have that place of productivity, but also to of course, and we're very lucky that there are, you know, federal and state laws in place to protect people that have disabilities, but I also think um and I know Beck, you know, you had talked about this before about like onboarding. I think um I'm a real big believer in a pre-onboarding where you um and it's my philosophy is a little bit like you know when you know somebody's great at what they do and then you promote them but they're great at that skill but not necessarily great at managing humans.
I see sometimes in the workplace when they talk about mentorship a lot of times and this is where you know again I live breathe love CliftonStrengths a lot of times you have people who want to be mentors that probably shouldn't be mentors right and that's where Clifton Strength comes in um so having somebody come in and have a mentor that um is a good relator and can share that look we're actually a really good place If if you're feeling uncomfortable about something, if something isn't feeling right, um, come to me and I may not have the answers and I'm not HR, but I'm going to be able to make that connection. Oh, and by the way, here's where the bathroom is. And don't go to this vending machine. Always go to the one on the third floor. those little things.
00:48:53
Again, making big things happen by making the little things count to take away some of that anxiety before someone comes into the workplace where they're not sitting at their desk because they're afraid to ask someone where the bathroom is or they're about to get a UTI, right? So, those little things make a difference. But I also think as a leader having the ability to on a smaller basis making people feel like it's okay for there to be a potential vulnerability, but vulnerabilities are not weaknesses. And that's that's a real cultural and generational shift, too. I mean, I think we always talk about um maybe we're not allowed to talk about like DEI anymore, but I think one of the things that isn't necessarily acknowledged as much is the generational differences because that touches upon everything, too. And I think that's that's a really important dynamic in the workplace.
And I think hopefully with small changes, the right mentor, it allows people to feel more comfortable about a learning disability, you know, about an illness. Um, you know, I I'm upfront with clients in the beginning to say, you know, I'm, you know, when I'm doing presentations, there's a lot of people who can do this without looking at their notes. I'm making the decision.
00:50:20
And I'm going to have my notes here and I may refer to them, but it's because I don't want to spend my points, waste my points memorizing something and not being with you versus I could memorize it, but then that's taking my points away from any personal exchange that I might be able to have at a greater extent. That makes sense. We uh we do something that similar to what Bree Groff a prior guest and author does um which is to you know get people's favorites.
00:50:51
we've adopted her manual technique. the user manual technique you can you know if you if you go to the episode that Bree Groff was featured in October I believe um we talk about this concept and it's really kind of right like allowing when you have a new project team or a new team you talk about the things that matter to people or when you show up at your best or right now at work I'm showing up in this way or when I'm having a hard time here's what you can expect or if I don't understand something right like just to better understand how we function because with the generation component. You know, one of the things that I talk about in my presentations is around being a generational agnostic because I hate this, you know, categorical boxing of people based off of one identity.
And so I don't but I won't argue is that of course, yes, there are generational differences based on lots of different things, but ultimately what it comes down to for me is just ask people how they prefer things, right? Like you could have, guess what? You could have a boomer that really understands technology better than me as, you know, a cusper between, you know, millennial and Gen X. You know, it's not uncommon, but we we just sort of like categorize people in these ways and we forget to just ask the question for crying out loud like what would you prefer, a text or an email or a team's message or Slack or whatever?
00:52:14
Yep. because every and it's funny because my approach to and and I know we've talked about my approach to the generational communications is it's not necessarily an age bracket, but it's understanding that there have been lived experiences for many people that are certain ages that come in that someone questioning or someone saving like it's so like there was a there was a there There was this young person who got so frustrated all the time because their boss always was so big on recycling paper and wanted to reuse everything and and when we were doing this exchange, the person shared, "I grew up with parents of the Great Depression. We didn't throw away anything." And then I joked, I'm like, I still save because my mom saved because my grandmother saved wrapping paper.
I don't think I've ever reused it, but it's this, you know, like when it was a really pretty thing, every Christmas, my Babci and she had nine kids and like a bazillion grandkids, every Christmas present, it was folding the wrapping paper and putting it to the side, you know? And so I I agree with it's not necessarily the age, but these experiences that sometimes people are coming into. And that's why empathy and kindness are so important, you know, so important.
00:53:42
Yeah. Yeah. I mean, if you if you were to zoom out on my shelves, like I've got little things all over my shelves because they're just these funny little things that remind me of this moment. It's the same reason I get tattoos, right? They remind me of moments. I sort of look at them as, right? like moments that I am choosing to remember that are on my body or something that I save and you know my wife is not a saver and she like why do you still have this thing and I'm like well that reminds me of this thing that happened and this time but it's and it's because of how I grew up that I know that I do that and it's also because of the generational influences that I have so I far more reflect right like kind of a child of the 80s than I do my millennial side because the people that I spent the most time with were you know 15 and 16 years old my aunt aunts, my aunt Becky and my aunt Susie.
Shout out to them. They're, you know, fierce first listeners of the podcast and but they were, you know, like they were children of the 80s and so that's that's what, you know, resonates with me, which is very different than somebody that's potentially in my same age bracket. And I'm also just an old soul I've come to appreciate. Um, I want to go back to the onboarding conversation because I also think that, and Heather, I know that you have a time crunch, so I'm going to say thank you for being my fearless co-host for the time that I had you. I want to make sure to wrap up things with Marie.
00:54:55
So, Heather, thank you so much. It was great seeing you. Oh my gosh, the same. I'll see you around here, central Pennsylvania. I won't take too many points. You have been a phenomenal guest. Thank you for all of your wisdom and for sharing your experience because I know there's a listener out there going through something and you gave them hope.
00:55:14
Absolutely. Thank you. That means a lot. Thank you so much. See you. So, I know that we lost Heather as our as our co-host right now, but I want to make sure to just get to a couple more questions that I I want to make sure I want to wrap back up into something you mentioned though about or go back into something they mentioned about onboarding because you and I have had this conversation before and I I I don't know if we've talked about it before on the on Thinking CAAP, but this idea of onboarding I think is so mission-critical to people and I think a lot of times like we forget that new jobs are one of the most high anxiety driving experiences that we can have, right? things, having a baby, getting married, the death of a loved one, the death of a pet, buying a house, starting a new job, ending a job, like all you know, placement of a child.
All of these things are things that are big moments in our lives.
00:55:59
But then for whatever reason, when we have new people who start with us because of all of the whirly-twirly chaos of everything else that is happening, I think sometimes we just forget, right? Like, I just need to tell this person where do they is there a fridge they can put their lunch? And for whatever reason, then on their first day, we show up and throw up and tell them everything they need to know for the next 30 years, and they're just wondering, uh, where do I get a pencil? Right? And so, we just forget the basic tools for them to accomplish the task we've hired them for. And now it takes three months for them to figure out just where is this one thing that if they had it on day one or heck, you know, even on day two or the first two weeks, it would have been a game changer. I I kind of like to talk about it as if there are two simultaneous onboardings taking place, right?
Or should take place in my opinion. One is that the true work onboarding policies, procedures, jobs, right? I also think simultaneously relying on again love CliftonStrengths, you can find those treasures. And I also think too a lot of times we make the mistake in the workplace that we silo onboarding, right? The mentor for communications has to be someone in communications. The mentor in um legal has to be legal, etc., etc.
00:57:29
for this like second onboarding, it has to be somebody that embodies and aligns with the mission of the company and somebody that becomes someone that your new team member feels comfortable going to. Um, and again, you're where do I put my lunch? Do like we get a lunch break, but you know, do people really, you know, go out or do they stay in?
00:58:01
Do they eat in a room together, right? Like do they One of the things that I really love to encourage is um a me survey. And it is what's your favorite candy? Um what's your favorite memory? Um do you like pets? Uh do you if you want to share, do you have a family? the little things like if they love Skittles, how hard is it to stop at a store on the way in and there is a cup, a company cup full of Skittles? those little things that I like. And again, this is probably not a great way of saying it, but I one of the things that I've always loved doing um is I think I've had this ability to make certain people seem more thoughtful than they are at that moment. Not because they don't want to be. It's that I can be a kindness whisperer. And it's again, it goes back to the original part of our conversation.
Life moves so fast, but you know, if it's been a horrible snowstorm and you have your team that's going out at 11:00 at night and they're shoveling so that everybody can get into the parking lot the next day, that's their job, right? It's their job. But it was really cold out. So why not like make sure when they come in you're acknowledging that you know the a lot of times I talk about the fact that you know we tend to have large company wins and a message may go out to that team. Everybody was part of that. I remember talking to a municipal team and you know there was a big win in the parks and wreck and I and they said well yeah we did we'd send an email to everybody in parks and rec and I said but the receptionist at the front door played a role. The janitor that cleaned up everything at night played a role.
Like it's not taking away and there's a special time to do that but big wins should be shared by everybody too. And I think, you know, that deviated a little bit from onboarding, but I think that goes to the importance of making sure somebody feels truly welcomed. You do that at your home when you have a new guest coming to your house. You make sure that towels are out so that they're not like scrambling and opening up every single cabinet. You make sure that you've called ahead of time to find out like, "What's your favorite cereal?" or "Do you like bagels?" Well, we're talking about a workplace to be clear, but but I I do this is something I think about all all the time. So, but I but I app but I the people in my life that I keep the closest this is the experience that I also receive from them.
So, it's you know I appreciate this 81,000 hours of your life will be spent in in work or some workrelated activity. 20% of adults say that they feel lonely in the workplace. Um I think it's 60 60% feel that nobody in their workplace no one understands who they are as a person.
01:01:36
Oh, I've been there. Or feel unsafe to share. Yeah. Can't can't we fix that just a little? And again, it's not I'm not naive. I'm actually kind of cynical, so I'm not expecting. Me too. Me too.
01:01:49
Hold hands and sing kumbaya and skip out, right? Basic kindness and helping to create situations where kindness can be seen to me is a no-brainer. And that's what I I that's what I embody. That's what I try to teach, whether it's through CliftonStrengths or whatever it is. I just try to make sure that people know as busy as life gets you can carve out these moments.
01:02:20
Yeah. Well, and I think the other thing that I want to make sure to say and then I want to make sure I ask you know one other question around your your journey a little bit around your health because I you know for folks who might be struggling with this topic I want to make sure to kind of back before we wrap but I think the other thing and it goes back to CliftonStrengths for me um is that if you're not good at like the thing or like I'm terrible about actually sending something like I have really big ideas all the time I want to do this right like you know I'm a ridiculous romantic you know I big things that I want to show my love, I'm terrible about then like I'll have the idea and the thought and it goes out of my head.
And that's where for me, Jen, my executive assistant, I know that I can message her and be like, "Hey, can you please send a gift from this person's favorites or can you please do a follow-up email to make sure that this is taken care of, you know, because I just like if somebody's done something or I know they're having a hard time, I want to make sure to acknowledge that." to your point, she makes sure that right like I deliver on those moments. If I didn't have her, I'm a far less thoughtful person because I just Well, you're not an unthought. You're just the the actual act of the thoughtfulness may not be seen. But I also think what a wonderful sense of self-awareness that you have to know that you've got a great one-two punch with you and Jen that it comes through, right? And I think that right there is part of the secret sauce for leaders.
You know, one of the things and and you you know that I'm a big thank you note or followup or just think and her thank you notes are beautiful as a recipient of them.
01:04:06
Yeah. Thank you. But it's to me it's you know like I just put something in the mail today for someone to just say I'm thinking of you like you know and that to me is is is so important. Now if I could I probably would be putting 40 a day in there. So I intentionally carve out time. Um, and it doesn't always have to be gestures, but you know, sometimes for leaders I say, you know, if you have that, and I do I say if you have relationship with your executive assistant, you have the note cards, you have them stamped, or you have them ready to enter office, a sticky note. That's all I'm asking you to do is a sticky note and put it on there and or jot a note down and and your team will take care of the rest.
You know, so I was doing an interview once with a guy for an executive director role that we were contracted to help hire for and he said I said what you know when you think about your leadership style what are some tactical things that you sort of write like embody and he said well one of the things I do is literally give all of my new people a toolkit. It's like I go and I buy a little mini toolbox and I buy cards like thank-you cards, congratulations cards, like you know, I'm totally writing this down.
01:05:21
Well, I'm serious. It's such a good idea and it's so simple and just like a mix of really like basic cards and he puts them in the toolbox, right? And he says, "This is something that is a really I want you to own and do because they are matter moments that matter for people." And so he's sort of setting the expectation from the fair and giving them the tools literally in the toolbox, right, to being I love that and it's such a simple thing that didn't cost a lot, right? And so I think if you have don't have an executive assistant, there's still simple ways to do this, right? But as a leader, right, like thinking about who like our start of all of our meetings, we always do like an icebreaker intro because we all work remotely and so it's important to us because it's just another way to deepen our understanding of each each other. But I'm not great about thinking about those.
I have like my go-to five and we've probably done them all before. So Mel on our team like she's the she's the person again.
01:06:14
Oh, I just spent time with her yesterday. I loved her. Oh my god, I'm so happy. But she like that's like she loves that kind of thing. And so that's part of what we've delegated to her to start off, you know, all of our team meetings.
01:06:28
And so she every time, right, she puts the put the prompt in a sauna on our project meeting so that we all know like here's what the prompt's going to be. Um so I want to make sure that you know to just ask the question you know you've talked about the difficulty and the challenge some of the challenges of what you experienced for those people who you know are listening and and might be in the middle of a difficult or uncertain health journey. Any advice that you would giving give them for finding their voice and advocating for their care that you want people to hear?
01:07:02
Sure. Um, I think first and foremost is listen to your body, right? And, um, and we talked about a little bit before, but I think we have tendencies to just say, "Oh, this is just that," or, "I'm going to get to it next week," or, um, I'm gonna wait and see if it happens one more time. Right? So, I think that's really important. I think unfortunately our health care system, and it's I'm not pointing fingers at anyone. I think it's a large complicated knot. Um, you know, it's hard sometimes to get in to see a specialist, sometimes hard to get in to see your doctor. Um, I think there has to be a respectful persistence um that you need to have. I think it, you know, it goes without saying. You call someone or you call a doctor's office and you freak out, chances are you're not going, you know, so remember that respect and that kindness part.
The person answering the phone can't see your blood results. Um, well, it's not their fault that you're struggling with, right? So, and document I think that I I think the documentation if you are going through an undiagnosed journey is so important and and you need you need to empower yourself. There there are smart questions that you can ask. Um don't go down I do not go down rabbit holes and that's easier said than done. Um, you know, I I started a small fund, the Connley Cushing's disease fund, and it I it's to help patients and their families, but also it's to create early um awareness for early diagnosis for um medical professionals. And part of that is really important is to allowing medical professionals again very specific to my disease to step back and look at things in its totality. Um when it comes to patients it's it's looking at the symptoms.
Now granted I will say AI I think is going to be a gamecher and you know medical professionals are also acknowledging that but it's so easy to go down some rabbit holes to think you can self diagnose. The internet is amazing. Um but you just you have to be careful. Um and I think that you know easier said than done after I'm diagnosed. Um, really do your best to avoid going into support groups of diseases you think you may have and listening to administrators who are not physicians because some of these groups will be like, "Well, let me know your blood results." And like that gets tricky, too. Sometimes you just want to feel seen and heard and know that you're not crazy. you know, you're sick, but you know, it's it's a really fine line. Um, so I think that's part of that journey.
Um, and I think it's so hard to say this, but patients, especially with a rare disease diagnosis, there are over 7,000 rare diseases, but there are hundreds and thousands that are undiagnosed and and rare by its definition is rare. So um a lot of times these diseases are taught on one day of the second year of their residency.
01:10:48
So, I I think it doesn't help being a patient and knowing you're sick, but also to sometimes physicians, especially your RNs, your PAs, your nurses, you know, even sometimes your um family medicine, they're not seeing these. So it's it's not ignorance. It's not malpractice. It's just it's just the sad case that you have the bail luck of having a rare disease. So I know that may not be as hopeful, but don't give up hope and um and document document document document.
01:11:31
Yeah. Well, Marie, I appreciate your willingness to again share some of your points with us today with our audience. I know that I always love talking to you. I mean, you are one of my my besties. So, I'll say that out loud. But I hope that I know that your message will resonate with others. And so, for our listeners, this is not going to be the last time that you hear from Marie.
01:11:52
If you're listening and you're a Community Action a association uh member agency, we're going to be launching something called the leadership cap which we started to talk about on social media. I'm excited to know that Marie is going to be a part of that program. So, more to come on that particular uh leadership uh program that CAAP is launching for new upcoming emerging leaders of Community Action. But really love spending time with you. I thank you Beck. this has been amazing and what you do and the topics you have um and the way that you present it just feels very natural and so I I appreciate it. I was nervous but um it felt great. So, well, thank you for that. Thank you for spending time with us. To our listeners, thank you for putting your thinking caps on.
If you want to find out more about Marie, we'll of course have the uh notes in the the notes section of the the podcast, but Marie Conley Consulting, I believe.com is M Conley Consulting. Thank you for correcting me, but we'll make sure that all of those details are in our notes for you. If you want to get in contact with with Marie, looking for a speaker, can't say enough good about her work, want to get in contact with her to have her come and and talk to your organization, please email us at info@thecaap.org.
01:13:04
And we're happy to connect you to Marie. Marie, thank you. Also, find Marie on LinkedIn. Connect with her, please. Um, and if you know, hopefully we'll catch you the next time on the Thinking CAAP. Awesome. Thanks Beck everyone.
01:13:18
Bye. Thank you for being a part of this episode of the Thinking CAAP. Check the show notes for resources and links to other episodes. And don't forget to subscribe and follow to be notified when new episodes are released. If you have any Community Action questions you'd like Beck or one of our local experts to answer in a future episode, please email your questions about Community Action to info@thecaap.org. or subject line Thinking CAAP.
If you have any Community Action questions you’d like Beck or one of our local experts to answer in a future episode, please email your questions about Community Action to info@thecaap.org — subject line: Thinking CAAP.