You Just Might Find, You Get What You Need: How MS Became My Unlikely Success Story

I'd like to introduce our speaker today. Her name is Emily Harden and the title of her presentation is you just might find you get what you need. How MS became my unlikely success story. Please take it away, Emily. Hello, thank you for coming. Um the first thing I'm going to say is I never thought about MS also standing for Microsoft. So if you think that's the case, I'm sorry. That is not what this presentation is about. Um MS stands for multiple sclerosis in this case. So that's what you're about to hear about. Sorry. Um I want to open up with a few disclaimers. I am tech adjacent. Do not ask me to code stuff for you. I'm very

bad at coding. I know HTML and CSS and I started JavaScript and said absolutely not. Um however, I'm married to tech. All of my best friends are tech. I feel most comfortable in a tech surrounded room. So I appreciate that you're letting me be here. I am not an expert or a doctor. Um so don't pretend that I am one. I welcome feedback. I haven't given this presentation in like 3 years. Um so it's a slightly different presentation than I gave 3 years ago. If you hate it, let me know. If you love it, let me know. If you hate it, maybe don't let me know. Just kidding. I might curse a little. If that offends

you, I apologize. I'm going to try my hardest not to, but I'm giving you that heads-up. I also I'm going to try not to sing, but some of these songs that I'm going to mention just killer. Um and I have some dry humor and dark humor. It's going to happen. Be prepared. All right, my first question. Um how many of you know what an invisible illness is? Okay, how many of you experience an invisible illness? Or know someone who does? Yep. Pretty much everyone. So cool. I don't have to explain what it is, but I will really briefly. Invisible illness is something you can't necessarily see on someone that they may experience. So for example, multiple sclerosis.

Um MS and I'm going to get these stats right. Uh 1 million people in the US have multiple sclerosis which is 3% of people. No two cases of MS are the same. Um what I like to describe it as is it affects your nervous system in the in the brain and all of your nerves wear jackets. And MS says it's hot outside. You don't need jackets. Let's take those off. And it's actually really cold. It's lying. Um the jackets are your myelin sheaths. That is the extent of my knowledge in terms of doctor terminology. So there you go. Um this all started for me back in December 2019. It was Christmas Eve. And I had a bit of a cold.

So I was like, I'm going to take a nap. And I woke up from the nap and half my body was numb. It's like, that's not normal. You know when you fall asleep on your arm and you feel that weird tingling sensation? I felt that from my neck down on the right side of my body. I was like, "Hmm, that's that's not great." And when it didn't go away for 20 minutes, I thought, "Uh that's definitely not great." And so we called a virtual visit doctor and he's like, "You know, you probably pinched a nerve. You're probably fine. But just in case it's a stroke, you might go to the ER." And I was like,

"Okay, I guess I'll go to the ER." So we go to the ER. We rule out it's not a stroke, but it's Christmas vacation. So no other doctors are really there. They just mainly said, "It's not a stroke. Go talk to your primary care sometime soon. Bye. And so they sent me home except for for me in my case home meant IHOP because I was hungry because it was midnight on Christmas Eve. On Christmas Day, I went to my sister-in-law's house for Christmas. I am still feeling that tingling sensation from my neck down on my right side. And she was studying to be a nurse practitioner. She's like, "Huh, I think that you might have this." And opens up her book

and says, "Multiple sclerosis." And so I was like, "Oh, well, either you're a fortune teller or I'm crazy." Those are the two options she gave me. Um and I said, "Okay, well, I don't really want MS. Maybe I could be crazy. I could I could do that." Um but no, that's what happened. I got MS. I A couple days later, I woke up and I had the worst pain in my head that I've ever experienced in my life. Uh it was as if someone had stabbed a knife in my head and then was moving it around. Not the best. Don't recommend. Um so we end up in the ER again and here it goes again. You know, we're in the ER

again. This time I get checked in. This time we go to the main hospital and not the south location. And I'm checked in there for days. Um I'm getting so many MRIs and so many tests. Side note, if you haven't seen this music video, look it up. It's really good music video. Okay, continuing. Um so so many tests. It was as if high school never ends. Okay. Um on the right is an example of a stroke test or uh cognition test. It's not the one they gave me, but it's similar. I had to do stroke tests and neuro tests all of the time because they weren't sure what was going on. Come to find out

I had MS and I got diagnosed. If you've never seen Crazy Ex-Girlfriend, this is a very niche song. This is probably the only song There's a couple. This is one of the only songs that you might not recognize. I highly recommend Crazy Ex-Girlfriend. It's a great TV show. But they literally have a song called Diagnosis. So, I got diagnosed and it was the first time I ever got diagnosed um with something and went to the doctor and they sent me home and I wasn't feeling better. I didn't know that doctors could do that. They can. Fun fact. Um I was in the doctor's office for 5 days in the uh hospital for 5 days. And in that time, I

had at least five MRIs, at least two spinal taps, numerous blood tests, but I did leave with an MS diagnosis. I will say that is very rare. Most people uh it takes years to get diagnosed with MS. I was fortunate or unfortunate that I also was getting diagnosed with pseudotumor cerebri. And yes, that means fake tumor. My brain thinks there's a tumor in my so it starts uh it's basically like high blood pressure, but instead it's high spinal fluid pressure. And that was actually what was causing my headache. Um it was unrelated to my MS. But because they were scanning my head, they found both. Crazy. The only thing I knew about MS was President Bartlett from The West Wing

had MS. Regardless of if you've seen The West Wing or not, MS had a very tiny representation in pop culture. Um this is the diary entry, a little bit edited down, of what I was writing. You can tell there's spelling errors. You can tell I don't know what I'm talking about. Um when I was in the hospital, I I was just very much at a loss for words. I thought I was experiencing all the stages of grief and maybe I was, but I've had a lot more grief to go. Um, I finally got home, was trying to do a puzzle, my hand would not be stable. I just kept shaking. I started experiencing more and more

symptoms. Um, there's the puzzle I was actually doing. My husband was doing LEGOs and I was doing a puzzle. And it was just bad day after bad day after bad day. I spent 3 months on FMLA. Um, I spent basically every day cuddled next to my dog, not knowing what I'm doing. And time just kept on slipping by. And that's when I kind of realized, what am I doing with my life? Do I want to go back to working in apartments, which is what I happened to be doing at the time? And I was like, should I stay or should I go? And what was I made for, you know? And that's me traveling, and yes, that

is a ridiculous outfit I'm wearing. I understand. Uh, the outfit next to it is me as a telephone when I was in theater in high school. And those are the things that brought me passion, was talking to people and being in theater and traveling. Those are the things I like to do. Was I doing any of that with apartments? Not really. So, at the end of the 3 months, I decided to move on. Um, and I'll say that I uh I started to feel better in about March 2020. And uh we all know what happened then. So, I stayed at home a lot of the time. But, I decided I can change my perspective. You know, I at my

7-year-old self when I was having those dreams, I can still live those dreams just slightly differently. So, I went to Disney World, but yes, I had to use a scooter to get around, but I was still able to go to Disney World. I was able to quit my job. I I know not everyone can. Um but I was fortunate that I was able to quit my job and um move forward and do other things, and I found a whole new world. Um a few months later, I'm trying to kind of figure it out um looking at coding, and I I briefly talked about this earlier. Um there's an organization in Oklahoma called Techlahoma. It's a great

organization. They're a nonprofit. And they connect people who are interested in tech to jobs, to careers, to education, to whatever it is they need to each other. And so, I went to a free user group online because it's 2020. And discovered they were um hiring for a part-time position to help with community management. And I was like, "Okay. So, I could be with tech people virtually and do my thing from home." So, it was really cool. I kind of was able to reestablish myself, reestablish my confidence, and I finally learned the difference between Java and JavaScript. And then I started speaking at conferences. I became the executive director of Techlahoma eventually, and I was like,

"I made it. This is the life." And that's about where I ended last time I gave this presentation in terms of my story. I moved on to the rest of the presentation at that point. Um but life has changed since then. And I'm now in the process of applying for disability. I'm in an entirely different place now. Um I am forgetting a lot. I forget all of my rough patches. And so, I do mean forget you and not the other version of this song. I am talking about forgetting. I Oops, I did again. Like, I keep forgetting that I have a disability and that I have to hold myself back and not push myself at

every moment of every day. Um I stopped for work for a couple of weeks. I took some time off. And then I was able to go back to work, but now I can't really do that. And so, I'm trying to shake it off. I'm trying to shake off the the struggle that I'm dealing with of not being able to work. And I realize it's it's hard. It's really hard. Um but it's not impossible. And by now, you're probably thinking, "Well, what about us? You know, when are you going to teach me how to doggy?" And the first thing I want to say is train yourself to say no. Be willing to say no to projects, to

things, to things you can say no to, be willing to do so. Um I was asked to get coffee with a friend. No, I'm sorry. I don't have time. I know that I'm about to go to San Francisco and give a presentation. I'm going to have to get up at 4:00 in the morning Oklahoma time, which is 2:00 in the morning California time, to go give this presentation. And I know my bandwidth is going to be nothing. So, I have to be willing to say no to things. Don't be toxically positive. You can be positive. That's great. You should be positive about things, but don't be toxic about it. Um what I mean by that is you're allowed

to have emotions, you're allowed to feel bad, you're allowed to say, "I don't feel good today." And that's okay. That's not a bad thing to say. Another thing is to smile more. And I don't mean that in the like super misogynistic way, like, "I think you should smile more." Okay. I'm talking about actually smiling for yourself. So, I'm going to read a little thing. Um while we're born with the ability to smile, studies show that as we age, we smile less often. But smiling and laughter actually have a lot of health benefits. Um it reduces your blood pressure and your pain, it can decrease your depression, it can actually boost your immune system. Now, again, not a doctor,

so don't quote me on that. Um but it redu- it um releases endorphins and make you happy, you know, when they say like fake it till you make it, they really it does work. Like if you smile, your body will start to release endorphins. Um all of that was true according to the internet, so everything on the internet is true. We all know this. Um the this image kind of struck me because I was talking to my therapist about self-care versus aftercare, which is something I'd never heard of before. I had gotten really good at aftercare. I feel bad, and so I'm going to take some time for myself. I'm going to rest. I'm going to drink a lot of water. I'm

going to take myself out for a massage. I'm going to go get some food, right? What I'm not good at is self-care, doing all those things before I feel bad. Who would have thought? That's what normal people I hate the word normal. That's what people who aren't struggling do when they're talking about self-care. They're actually just taking care of themselves on a day because they can. Blew my mind. Now, if you had one chance one opportunity I'm kidding. I'm not going to actually rap the whole thing. Listen, you're going to lose yourself sometimes in your disability. Um And if you don't have a disability right now, know that the disabled community is the one um

What's it called? The Mhm, I'm losing my words. Um it's a community that you can join at any time. You never know what's going to happen. If you get hit by a car, if a plane comes crashing into this building right now, knock on wood it doesn't. Um you never know what's going to happen. And so, you can enter the disability community at any time. So, you have to be prepared for that. But um when I first got MS, I lost myself. I didn't know who I was anymore. I The first question I asked when I got diagnosed with MS was can I still have kids? It's my first question. And is it genetic? And

there's a lot of factors that came into this, but basically, yes, it's maybe genetic, but we don't know. And yes, I can still have kids, but I'd have to get off of my medication that prevents me from having relapses. And I would probably have a really bad relapse right after giving birth. And I would probably then struggle more to take care of the child. And a whole lot of other things. Um And that had been my goal in life was to be a mom, right? That was one of my goals. And I think back to my 7-year-old self, right? I was wanting to be a mom. I wanted to be the CEO of big company. I

wanted to be in high heels at the tallest tower in the biggest city. That was going to be me and then also a mom, right? Like both things. I was going to be awesome. And what I realized later and I'm still realizing and I'm still working on is that's not who I am. It's who my 7-year-old self was. And that's okay. And I'm not going to necessarily hit all of her dreams, but she's not me. She's part of me, but she's not me. And so I liked this image of not spiraling, but evolving. You're growing. You're changing. You're not the same person you were yesterday. You've learned something new. You slept wrong and your head hurts now.

Something's different than yesterday and that's okay. And that's good. And you can change and you can grow and you can improve. And you can un-improve? Is that a word? I think so. You can you can you can lose some of the things too and that's also okay. Um you know, ultimately I'm not going to have kids, right? And I've made that decision to change that lifestyle. Ultimately, I'm probably not going to be the CEO in a high tall building wearing my high heels and being the boss. And that's okay, too. I'm giving talks, which is something I don't think my 7-year-old self thought about as being a dream, but it's pretty awesome and I like it a lot.

Um oh, this I'm skipped ahead. This is everybody hurts. This is when they're talking about the fact that like you can enter the disability community at any time. Um something that I think has it has helped me with as well is the idea in project management of pre-mortem versus post-mortem. So, as you're looking at a project when you look at something and you say what is the absolute worst thing that can happen with this project? Let's say it's that the project can't launch on time. Maybe on time is the worst thing, right? You follow that all the way through. So, if you have an issue that happens as you're going through your project is it actually going to affect the time?

That's the worst thing that can happen, right? It's going to affect the time then let's put that on high priority. If it's not affecting the time we can wait. We can work on it later, right? As long as you have a focus point, a specific thing you're going to focus on that is a great way to manage in a pre-mortem post-mortem thought process. Uh it kind of goes into the red string theory where um you might have heard this as the invisible string theory in love, right? Um oh, I you ran into the person you loved at a coffee shop, but you didn't actually meet them. They were two people behind you in line, and then all of a sudden

you meet them 5 years later when you're actually meant to be, right? That's very sweet. But, you can think about that also through your projects and through your work. As you're working on yourself, as you're working on your job you can think about what is the thing that brings me joy? What's the little moment the little passing joy that I have and try and find the thread that goes through from that. So um let's say you have to talk in front of your peers at work and you realize you really like public speaking. Okay, well, let's focus in on that. Let's hone in on that. Let's follow that string. Let's keep going that way. Um, don't worry, be happy.

Right? Like I said, um, it is difficult to uh do this without being toxically positive, so I do warn that. But, um, comparison is the thief of all joy. I'm sure you've heard this before. Um, in this room there are smiling faces. There are tired faces. There are faces that aren't paying attention to me and there are faces that are, right? And that's fine. All of them are true and all of them are being true to yourself. This is my current Instagram highlight, uh, the most recent post or whatever right? But, this isn't me. This isn't what I'm like every day. This isn't every single thing I'm doing all of the time. For one, I haven't posted

in like a hot minute. Um, but for two, I only post the exciting things. What it doesn't show on there is the fact that two two of those posts talk about a podcast that we just stopped. Right? We recorded three episodes and we stopped it. Um, one of those pictures is of an event that I'm not going to participate in anymore because I don't have any money, okay? Um, you know, the picture of me and my husband that's the middle left, that's I was having a rough day that day. Um, I had to cancel some of my evening plans even though we were traveling because I couldn't manage to do it all that day. It doesn't show everything. It just

shows the best things. That's what everyone's showing you. No one's actually having a wonderful time 100% of the time. So, remember that. This is a visual image representation of that as well. You only see a little bit of everyone's day. You can't assume that that is every part of everyone's day. Um anything can happen. Progress is uh again flexible. You can grow. You can ungrow. You can change. You can um become a different person every day and that's okay. And if you haven't heard of this kid song called the affirmation song, I highly recommend it. Um the very beginning of it, it is Snoop Dogg, by the way. This is Snoop Dogg. Um it starts there's no one better to be

than myself. Today is going to be a amazing day. My feelings matter. I get better every single day. And I choose to feel happy. Those are all lines from that song at the very beginning, actually. The one thing that I don't necessarily agree with that's in the song is it says every problem has an answer. And you work in cyber, you know that's not true. Um there are lots of problems that have no answer right now. But most problems have an answer. So, every time I sing it, that's what I say. Now, I hope you've enjoyed today's presentation. Don't you forget about me. But also, don't forget about you. Um if you want to listen to every song

that I mentioned it's a really weird Spotify playlist. I do have that on harden.page. Um you can also connect with me there. Um I love to answer any questions you may have um or chat afterwards. Happy to talk. But, thank you so much.