Feb 28, 2018
Transcript: Thanks Allan, this is David Brower with your 20 minute podcast. Our special guest today is Hilary Jastrum, and she is, man she is on a roll, She has so much passion to support entrepreneurs in all kinds of different ways, with the inception of a program called SickBiz. And I am fascinated by what you're doing with that. Hi Hilary, and welcome to Colorado from Minnesota. I think I'm warmer than you today.
Hilary Jastrum: You are warmer than me, I had to open my office door. Thank you so much for having me on, I appreciate it.
David Brower: Oh, you bet, you bet. Looking forward to it. So tell us about I guess you want to start with SickBiz and how that came about?
Hilary Jastrum: Yes, absolutely. SickBiz is my baby, and actually is a baby. So it's our baby nonprofit that we established last July, but we incorporated in September. And the onus is on supporting chronically ill and disabled entrepreneurs, because I am a chronically ill entrepreneur. And I was put there rather suddenly, by the onset of a rare neurological disorder called Transverse Myelitis. It's an ugly despicable sister to MS.
David Brower: Oh, wow.
Hilary Jastrum: Yeah, so it's very debilitating. And I had been working outside of the home, and I had a dream job. I was a Web Content Admin for Home Furniture. So I helped in their marketing department, did all of their social media, and I would get on the floor and take pictures, and work on campaigns. And it was wonderful, just wonderful. And then I became sick, it was a creeping illness. Started in my feet, and I started to feel like they were losing sensation or falling asleep. And then it felt like I couldn't dry myself off after a shower. And that progressed to weakness, where one day I said "I don't think I can stand up." And we moved into seven months of vertigo, and I couldn't walk down the hallway. It was very public display, which was both humbling, but also extremely vulnerable. And you just really lose all of your boundaries at that point. It didn't matter who was walking by, I'd grab onto you, and you'd become my human cane.
David Brower: Sure, well and that had to be terrifying as well.
Hilary Jastrum: Oh, it was horrible, horrible. And they would speak, the neurologist, I'm on my third neurologist now, which I really like him, he's a good guy. But I do want to encourage people to shop around if you're not happy with your doctor, it's vitally important. But they would speak in cloaked terms, neoplasm, and I would focus on remembering that so I could run home and Google it, and see what it meant. And read that it meant potentially a spinal tumor in the context they were using, the terminology. And then I was totally freaked out, and this went on for five months because they couldn't figure out what was wrong, and what was going on, and whatever. You don't naturally gravitate towards a rare neurological disorder. You kind of go more towards garden variety thing first.
David Brower: Absolutely right. And like anything else in life, and of course this is exaggerated because of the truth, but any time you run into anything that is unknown, that's like the biggest challenge ever. Because you just don't know what you don't know, and you don't know where to go. And you don't know if there's a way to help, there's lots of ways not to. That's always the biggest challenge to me personally is the unknown piece. And then when they figure it out and they tell me "Okay well it's going to do this." All right, it still sucks, but at least I have a plan, you know?
Hilary Jastrum: Yes, that's exactly right. Because you don't know if you're looking at something that's treatable, if you're looking at something that's terminal. You don't even have any idea how to begin to process what's happening. And the fact that the doctors can't make a diagnosis, so I got sick around April Fools Day, which I don't think is very funny at all.
David Brower: At all.
Hilary Jastrum: Like that was the worst joke.
David Brower: Oh my gosh, well the good news is Easter is on April Fools this year, so there you go.
Hilary Jastrum: Oh see, always look up, right? Yeah, diagnosis came in September, early September, and then I was out of work by that following January. I had tried to do, I was on short-term disability for a while, and then had tried to even work from home. But Home Furniture was wonderful, they wheeled in a recliner and put it in my cubicle so that I could work. I couldn't fulfill the job requirements anymore, and I have nothing but love and gratitude for every single person who was there. There was so much compassion, and nobody had ever seen this sick circus animal on display. It was unprecedented, so I had people coming out of the woodwork that just were so caring, and so loving. And they would do research, and they would come over and just hug me, or they would bring me little gifts, or food. And even the CEO was like "We don't know what to do, but we're here for you and we care." I had been on a very good track there, I had been on a very good track.
David Brower: You know what, all that speaks volumes about you. Because people don't respond to people that way unless the recipient is truly, truly something special. And you obviously have exemplified that in your caring for all of them, and you allowed them to bring that back to you, which not everybody can pull that off, you know?
Hilary Jastrum: Well I just try not to be an a-hole every day.
David Brower: There you go. I see that, you got a T-shirt?
Hilary Jastrum: That would be an awesome T-shirt, wouldn't it?
David Brower: That would be an awesome T-shirt man, I'm just saying. So during the course of your ... by the way, your energy, humor, laughter, it just rocks. It just permeates your personality, and what a gift that is, so I'm thrilled to be able to talk to you just for that reason. It makes it fun, it makes it fun.
Hilary Jastrum: Thank you.
David Brower: So in your course of this battle, did you find anybody else on the planet that had what you had?
Hilary Jastrum: I did. I found, it's the largest Facebook group now, and I'm friends with multitudes of people. This is the Transverse Myelitis Facebook group, and what people don't understand is there are two forms of Transverse Myelitis. And David, I got lucky, because I have chronic Transverse Myelitis. So I don't have new lesions, I have a lesion in my thoracic spine, which interrupts the electrical signal. So basically I short circuit all day long, which causes burning, and tingling, and numbness in the extremities. But it's also groundbreaking fatigue, because your body is so tired on a cellular level. Just incredibly tired from trying to push those signals out. So yes, I did find other people, but there's another kind, and that is the acute version. The acute version can paralyze, and even kill people within hours.
David Brower: Oh my gosh, that's ... oh my gosh.
Hilary Jastrum: It's devastating, absolutely devastating.
David Brower: I got the wrong kind of goosebumps on that one, you know what I mean?
Hilary Jastrum: Yeah, mm-hmm (affirmative).
David Brower: Wow.
Hilary Jastrum: And it's so rare that there's no funding. It's so rare that people don't understand it. It's not one of the things, so it's often mistreated also
David Brower: Well yeah, sure. I mean if you don't find the right doc who has the right experience and knows what you're talking about, it's just a crap shoot, you know?
Hilary Jastrum: Mm-hmm (affirmative), absolutely. You are not given the kind of protocol treatment, and so then you lose out on ... and there really isn't any treatment, but what they do is they can give you high doses of steroids in the hospital. They do it via IV, or even at your home. And it doesn't minimize your symptoms, but it shortens the length of time that you have them. So you're still going to have whatever damage would come from whatever your particular physiological circumstances, but you will not suffer as long, to such a degree. And they call that being in a flare, and the flare will knock you out.
David Brower: Wow.
Hilary Jastrum: Yep, it's a weird thing. I should have played the lottery instead.
David Brower: I know, right? You would have had much better odds, my gosh. So how did all of this lead to SickBiz?
Hilary Jastrum: Well so my formula for surviving was, I will say my marketing strategy was groveling.
David Brower: There you go, understood.
Hilary Jastrum: Yes. I know I could work, I come from a background, it's a pretty skid row background. And so I knew I could work, that's what I always had going for me. Coming out of extreme poverty, living in a very ... in a neighborhood that was pretty sketchy. So I always knew I could work though, and I started working at a young age, and that's what I relied on. And then I found there was almost a release in work, because it takes you out of your personal suffering, and it channels your ... even your sensations are channeled towards something else. And so it's kind of fooling your body. Yes, you're still experiencing what you're going through. But for example, okay so sometimes my throat will ice over and it will feel like I have trouble breathing, and then I also have some nerves in the diaphragm area that are affected, so sometimes it can fell like I actually can't breathe that well. But I might fool myself by putting in a throat lozenge that I know gives me that mentholated feeling anyways, and so it delivers that expectation and it fools my body.
David Brower: Oh, wow.
Hilary Jastrum: Yeah, it's the same thing. It's the same thing like when you use a Tens unit if I'm having extreme deep muscle aches for example. You put the Tens unit on, which are little sticky patches that deliver shock signals, and that fools your body. And it's the same thing, entrepreneurship for chronically ill and disabled entrepreneurs is the same dang thing. Because you are fooling yourself about your reality, and really creating a different reality, or choosing to participate in a different reality of your own making. So as you're doing it, then you're also empowering yourself.
David Brower: My goodness. And through that process, and do you ... well first of all your sense of humor has to help you tremendously, right?
Hilary Jastrum: Oh yeah, oh you have to have it.
David Brower: I mean all I hear to begin with, I shouldn't say all I hear, but two of the key ingredients that I hear about your success if you will are work ethic and sense of humor.
Hilary Jastrum: Oh, amen. All day long, absolutely.
David Brower: All day long. And so you help people that find you in the SickBiz community, do you help them with those kind of things? Or do they come to the table with a work ethic and a sense of humor, or how do you work with these fellow entrepreneurs?
Hilary Jastrum: You know, it's like we tell our kids right, "Everybody's special, so nobody is."
David Brower: Sure, sure.
Hilary Jastrum: But there's some truth to that. This just happens to be your thing, other people have different things. Other people have chronic relationship issues, other people have other physical disabilities, maybe not disabilities, but physical symptoms that can affect them. They maybe have cluster migraine headaches, but they still have to find a way to work. Other people fall down and break their leg skiing, and then they have a bum leg, and they can't do this or that. This just happens to be your thing. And coming down from a point of why am I affected, who am I to be affected? Everybody has something, and how we manage, and how we thrive has to do with our choices. So the very first thing, and when I talk to people I tell them "I'm not telling you about your own power, or your choice to make a decision to disempower you or invalidate you. It's exactly the opposite, you can have your feelings, you can have your emotions, but you can still make a choice."
David Brower: You help them give themselves permission.
Hilary Jastrum: Yes, absolutely. Absolutely. And I really try to be as prescriptive and actionable as possible. Because I think it's one thing to read somebodies blog story and say, "Well that's a great story, wonderful it stayed with me and that just gave me the warm fuzzies." It's another, right to take it and say "This is the story, this is what I learned. And these are the actionable steps that you can take to create a different reality for yourself." So for example, if you're feeling down in the dumps, and that is a very shallow comparison to what's happening when life is just shaking you by the lapels, and showing you zero expectation of what's out there. You have no idea, but you still have the control of your actions. And I use this analogy a lot with my kids, I would say "Okay I want you to go do the dishes." And they'd say, "I don't want to go do the dishes." And I would say, "I don't really care how you feel about the dishes, you need to do them."
David Brower: Yeah, you need to step up. Yeah.
Hilary Jastrum: Yeah, you need to nurture your business. You need to do these things that you know will lead to your success. Because logistically, you know what you need to do. Are you choosing to not do them because you're choosing to stay immersed in your emotions and allowing yourself to be crippled from moving forward? That's empowering.
David Brower: And when you have an opportunity like that, it's got to be ... I mean at some level, we all have our own comfort level, for lack of a better term, right? I mean we're in this deep depression, we're having these huge physical abnormalities, whatever it is. And for whatever reason, that's our comfort level. And to get out of that comfort level is hard, it takes a lot of work to get to do what you're talking about, to step out and build your confidence that you can do better with these other steps.
Hilary Jastrum: Yes. And it's one step, I talk a lot about the one step. Whatever that happens to be, it's one step. So for example, probably five months ago I went gluten free. And people were saying "Drink more water, and make sure you get more sleep." And I said, "Don't talk to me."
David Brower: Exactly, on my God. Don't you love it when people put their stuff on you?
Hilary Jastrum: Yes. And you know, I would go to the gym, I joined the gym and I thought I'm just going to do this. And I worked with a trainer and he said, "I want you to focus on one thing. Do one thing, and you have over a 90% chance of succeeding with one thing. When you add another thing that you need to do, you drop those percentages by over half. And so if you just do that one thing and do it really well, just do that one thing that's a really great thing to do." Then I was gluten free for probably three months and I said "Okay, all right I need to exercise." So I bought a little exercise bike, and it's a recumbent one. It sits in the living room, we put it in the living room so I actually use it, instead of putting it ... right?
David Brower: Instead of hanging clothes on it.
Hilary Jastrum: That's exactly right, you have to put it where you're going to be. And sorry, but your interior design be damned.
David Brower: Right, yeah exactly.
Hilary Jastrum: And then I am working on getting good at that, how long can I do it for? Not very long, but I can do it every day probably. So we focus on one thing, and when people get stuck-
David Brower: That's part one of our interview with Hilary Jastrum, more on SickBiz.com, coming up in part two.
Allan Blackwell: Your 20 minute podcast with David Brower has been brought to you by Audible. You can listen to any of David's podcasts anywhere podcasts can be found, including iHeartRadio, the Spotify mobile app, and at DavidBrowerVO.com/your20minutepodcast. Until next time, thanks for listening.