WEBVTT 00:26.405 --> 00:29.072 (upbeat music) 00:33.520 --> 00:34.882 Well welcome everyone for another episode 00:34.882 --> 00:38.110 of "The InVisible InCourage Podcast." 00:38.110 --> 00:39.460 And why do we call it "InCourage?" 00:39.460 --> 00:41.920 That's "I" "N" "Courage" 'cause we believe every day 00:41.920 --> 00:43.870 you need courage to make it through the day 00:43.870 --> 00:45.847 when you're living with an invisible disability. 00:45.847 --> 00:47.260 And we just wanna highlight the great things 00:47.260 --> 00:50.050 that our people are doing out there. 00:50.050 --> 00:53.260 And we're very excited for our episode today. 00:53.260 --> 00:57.940 Remember, this is Invisible Disabilities Walk and Roll month 00:57.940 --> 01:00.610 in the month of May, that's at walkandroll.org, 01:00.610 --> 01:03.250 we're walking and rolling to support 01:03.250 --> 01:06.130 and to remember and to honor our friends and family 01:06.130 --> 01:08.140 living with invisible disabilities. 01:08.140 --> 01:11.140 Well today we wanna welcome Lauren Pires today. 01:11.140 --> 01:12.790 We're very excited to have her. 01:12.790 --> 01:14.143 So Lauren, welcome. 01:14.980 --> 01:18.040 Thank you so much, I'm so excited to be here. 01:18.040 --> 01:20.170 Well, we're thrilled to have you here too. 01:20.170 --> 01:21.687 And so we kind of wanna kick this off. 01:21.687 --> 01:24.670 We're gonna kind of, instead of giving a bio about yourself, 01:24.670 --> 01:25.690 we want you to give the bio. 01:25.690 --> 01:28.240 So share with us a little bit about yourself, 01:28.240 --> 01:29.620 where you're from, where you live, 01:29.620 --> 01:31.570 and tell us a little bit about your day-to-day life, 01:31.570 --> 01:33.040 'cause that's gonna be a really important part 01:33.040 --> 01:35.040 of our conversation today. 01:35.040 --> 01:36.130 Sure, yeah. 01:36.130 --> 01:40.750 Well I'm Lauren, I live just outside of Toronto, Canada, 01:40.750 --> 01:44.746 and I am a PRN media lead for a nonprofit organization 01:44.746 --> 01:48.668 that runs the largest of Deaf Asian Festival in Canada. 01:48.668 --> 01:50.800 So I have a lot of fun doing that. 01:50.800 --> 01:52.870 It'll be 10 years this month 01:52.870 --> 01:55.300 that I've been at that organization. 01:55.300 --> 01:57.721 And I never thought I would work for a festival 01:57.721 --> 02:00.070 with all of the energy that it takes 02:00.070 --> 02:02.950 to run around on festival days, 02:02.950 --> 02:04.873 but I have a lot of fun doing it. 02:06.970 --> 02:09.913 So tell us about why your energy would be an issue. 02:10.960 --> 02:13.637 So I was born with central core disease, 02:13.637 --> 02:15.850 which is a rare neuromuscular disorder 02:15.850 --> 02:18.010 where I have about 33% of the strength 02:18.010 --> 02:22.780 of the average person, so not even 33% less strength, 02:22.780 --> 02:25.540 just straight up 33% strength. 02:25.540 --> 02:27.850 And I know people who work in events 02:27.850 --> 02:29.620 who have 100% of their strength, 02:29.620 --> 02:32.440 or what you would say average strength levels 02:32.440 --> 02:33.310 and energy levels, 02:33.310 --> 02:35.620 who they're exhausted at the end of festival days, 02:35.620 --> 02:37.990 it takes them days to recover, there's a lot of body pain, 02:37.990 --> 02:41.920 and I definitely have all that in spades. 02:41.920 --> 02:46.090 But I feel like the joy that comes from doing the work I do 02:46.090 --> 02:49.330 is worth it and pushing yourself is absolutely, 02:49.330 --> 02:51.399 that's what I'm here for. 02:51.399 --> 02:52.900 So you were born with this, 02:52.900 --> 02:54.490 so tell us a little bit about growing up 02:54.490 --> 02:57.310 and the impact obviously on your family, on you, 02:57.310 --> 02:58.723 and what that looked like. 02:59.560 --> 03:02.623 Yeah, so I actually, I was born with it, 03:03.472 --> 03:05.380 they didn't know what it was when I was born. 03:05.380 --> 03:08.410 I was in an intensive care unit for two months 03:08.410 --> 03:11.110 after I was born, I had a muscle biopsy, 03:11.110 --> 03:13.905 I went into cardiac arrest when I was a baby, 03:13.905 --> 03:16.084 there was a lot going on, 03:16.084 --> 03:18.910 multiple doctors didn't think I was gonna make it. 03:18.910 --> 03:23.320 And there wasn't really, it was a mystery of what it was, 03:23.320 --> 03:25.240 there was no diagnosis. 03:25.240 --> 03:27.070 Actually, I didn't get the diagnosis 03:27.070 --> 03:30.374 of central core disease until I was in my early 20s, 03:30.374 --> 03:31.390 at some point. 03:31.390 --> 03:35.980 I was misdiagnosed at 12 with a different kind of disorder. 03:35.980 --> 03:39.190 And then I started seeing a specialist after I turned 18 03:39.190 --> 03:42.130 who said, "Oh, it's definitely central core disease." 03:42.130 --> 03:45.790 And at that point I was, it was really jarring, 03:45.790 --> 03:49.750 I was almost kind of mad that I had spent 03:49.750 --> 03:52.630 from 12 to my early 20s thinking, 03:52.630 --> 03:54.640 oh okay, I have an explanation, 03:54.640 --> 03:56.500 I can have something to tell people, 03:56.500 --> 04:00.072 because prior to 12 I didn't have any explanation. 04:00.072 --> 04:02.774 I didn't really know how to describe it to people 04:02.774 --> 04:04.233 or to give any context, 04:04.233 --> 04:09.233 I didn't know the 33% strength number, I didn't know a name, 04:09.580 --> 04:13.339 I didn't know anyone who had it, I didn't know why, 04:13.339 --> 04:17.830 so it was very, it was confusing I think, growing up. 04:17.830 --> 04:20.486 And then once I got the diagnosis, 04:20.486 --> 04:24.896 I was actually able to find a Facebook group of people 04:24.896 --> 04:26.650 who have it across the world. 04:26.650 --> 04:29.530 There's about 1500 people in this Facebook group, 04:29.530 --> 04:34.090 and it was amazing to finally find people who could relate. 04:34.090 --> 04:37.900 And central core disease affects everyone differently, 04:37.900 --> 04:40.420 but people talking about their milestones, 04:40.420 --> 04:43.562 people being diagnosed or yeah, 04:43.562 --> 04:46.420 some parents with children in the group 04:46.420 --> 04:48.460 who were diagnosed at two or at six, 04:48.460 --> 04:50.680 it was really interesting to be like, 04:50.680 --> 04:54.580 wow, they will grow up and know what it, 04:54.580 --> 04:57.460 like they will have kind of a barometer for other people 04:57.460 --> 04:59.260 and what their milestones were like. 04:59.260 --> 05:00.940 We think about it with invisible disabilities 05:00.940 --> 05:03.490 is that's one of the aspects of invisible disabilities 05:03.490 --> 05:06.370 is people a lot of times can't find a diagnosis 05:06.370 --> 05:07.300 for a long time, right. 05:07.300 --> 05:09.940 And so sometimes even, they're treated one way 05:09.940 --> 05:11.560 and another way. 05:11.560 --> 05:15.350 And there's this great misunderstanding, we prejudge, 05:15.350 --> 05:18.100 I would be interesting to hear how it impacted you in school 05:18.100 --> 05:19.930 and with your parents and stuff, 05:19.930 --> 05:21.010 and that whole interaction. 05:21.010 --> 05:23.110 Because when you have an invisible disability 05:23.110 --> 05:24.790 and you're a child, 05:24.790 --> 05:26.350 sometimes people think differently 05:26.350 --> 05:28.930 than what really you're going through. 05:28.930 --> 05:31.960 Yeah, so growing up with it, with my mom, 05:31.960 --> 05:34.870 and I asked her about like how did it affect her 05:34.870 --> 05:37.930 and how did it kind of affect us growing up? 05:37.930 --> 05:40.785 And one thing she said was getting the school to understand 05:40.785 --> 05:44.140 when I was in elementary school, 05:44.140 --> 05:48.280 was really difficult because we didn't have a diagnosis. 05:48.280 --> 05:51.550 The only thing we could really say was her muscles are weak. 05:51.550 --> 05:54.460 And like, I could still walk, 05:54.460 --> 05:58.120 I could still semi-participate in gym, 05:58.120 --> 06:00.970 I wasn't very good, and I never wanted to, 06:00.970 --> 06:03.499 I could do a lot of things, 06:03.499 --> 06:05.290 they were just very difficult for me. 06:05.290 --> 06:08.308 And so it was really hard getting the school to understand 06:08.308 --> 06:11.834 what I could or couldn't do or what I could do, 06:11.834 --> 06:15.340 but then would tire me out or give me body pain 06:15.340 --> 06:17.860 for a long time kind of thing. 06:17.860 --> 06:21.105 And so she kind of struggled with the school administration 06:21.105 --> 06:25.840 to have them make accommodations for deadlines 06:25.840 --> 06:30.580 or for exemptions from gym or for getting in high school. 06:30.580 --> 06:32.500 I had shortened days. 06:32.500 --> 06:35.140 They gave me, I think the regular class load 06:35.140 --> 06:38.020 was four courses a semester. 06:38.020 --> 06:41.320 And then my first semester of grade nine, I had three, 06:41.320 --> 06:43.990 partly because she, my mom, and the school administration 06:43.990 --> 06:47.710 were worried, oh, a long regular day would tire me out. 06:47.710 --> 06:50.650 And so I went along with that for I think the first semester 06:50.650 --> 06:51.483 of grade nine. 06:51.483 --> 06:52.316 And then I decided, no, 06:52.316 --> 06:55.840 I want to do an average high school course load. 06:55.840 --> 06:59.590 And so I pushed myself to kind of do 06:59.590 --> 07:01.900 the rest of the semesters and the years myself. 07:01.900 --> 07:04.630 And then I actually had spare credits left over at the end 07:04.630 --> 07:06.953 and could take a period off on my own accord. 07:06.953 --> 07:09.493 So that felt really good. 07:10.630 --> 07:12.583 Yeah, well so that aspect of, 07:14.020 --> 07:15.280 sometimes with invisible disabilities, 07:15.280 --> 07:16.600 you can push yourself, 07:16.600 --> 07:17.620 sometimes it's hard, 07:17.620 --> 07:19.120 where there's times you can't push yourself 07:19.120 --> 07:21.214 and I think about what it took, 07:21.214 --> 07:25.060 what it takes each day for you to, you know, 07:25.060 --> 07:26.955 planning your day, I mean, share a little bit about that, 07:26.955 --> 07:28.930 what's it take, 07:28.930 --> 07:32.230 I mean if you know what your energy level is going to be, 07:32.230 --> 07:34.341 most people don't even think about it, right? 07:34.341 --> 07:36.190 So share a little bit about that. 07:36.190 --> 07:38.380 Well, one great example that I've heard of 07:38.380 --> 07:42.550 is the spoon theory, which is, there was someone who, 07:42.550 --> 07:46.240 they had a friend who asked about energy allocation 07:46.240 --> 07:47.500 and what it's like for them. 07:47.500 --> 07:49.787 And she picked up 30 spoons and said, 07:49.787 --> 07:52.270 "This is the amount of energy you have for today." 07:52.270 --> 07:55.060 And it takes one to get ready for work, 07:55.060 --> 07:57.460 it takes one to straighten your hair, 07:57.460 --> 07:58.810 it takes one to make breakfast. 07:58.810 --> 08:01.810 And so you really have to think about your 30 spoons, 08:01.810 --> 08:04.090 how are you gonna allocate them throughout the day? 08:04.090 --> 08:06.700 Whereas people with an average amount of energy 08:06.700 --> 08:08.830 maybe have 100 spoons. 08:08.830 --> 08:12.763 And so that kind of difference, to put it into context, 08:14.620 --> 08:17.950 a lot of my life is about energy consumption, I would say, 08:17.950 --> 08:20.890 just to be able to make it through my daily tasks. 08:20.890 --> 08:23.249 And I think actually one good example 08:23.249 --> 08:26.170 is when I was doing the Walk and Roll, there was a day, 08:26.170 --> 08:27.790 I think it was last Tuesday, 08:27.790 --> 08:30.670 where I walked 6,000 steps in a day. 08:30.670 --> 08:33.130 And that was because I just, I went to work, 08:33.130 --> 08:36.250 I walked across to the mall for lunch, I walked back, 08:36.250 --> 08:39.040 and then I ran some errands at another mall with a friend 08:39.040 --> 08:40.030 after work. 08:40.030 --> 08:41.590 And I was really proud of myself 08:41.590 --> 08:44.650 'cause I am doing more steps per day than usual 08:44.650 --> 08:45.880 for the Walk and Roll, 08:45.880 --> 08:50.080 but 6,000 a day was the top that I had hit at that point. 08:50.080 --> 08:52.360 And I was like, oh, I feel really good, I've doubled up, 08:52.360 --> 08:53.890 I can kind of relax tomorrow. 08:53.890 --> 08:56.349 And I definitely had to relax the next day 08:56.349 --> 08:59.770 because I think I struggled to get 500 steps. 08:59.770 --> 09:02.110 I stayed home, I was on the couch a lot. 09:02.110 --> 09:04.450 I was just walking around my condo, 09:04.450 --> 09:07.210 just to be like, okay, I should get at least 500, 09:07.210 --> 09:08.080 get something in. 09:08.080 --> 09:10.630 But part of the balancing act of my life 09:10.630 --> 09:13.361 is knowing when I want to push things 09:13.361 --> 09:16.097 and what I feel like I can accomplish 09:16.097 --> 09:19.330 and when I need to just kind of rest and relax 09:19.330 --> 09:22.240 and feeling okay about that. 09:22.240 --> 09:23.680 Yeah, one of the things I'd like to say 09:23.680 --> 09:25.270 with people with invisible disabilities, 09:25.270 --> 09:28.461 we always think that we know better than they do, right? 09:28.461 --> 09:31.330 And the reality is, is the person living with it, 09:31.330 --> 09:33.356 they know what they can and can't do. 09:33.356 --> 09:36.526 It's not for me to decide, oh, well you look like you can, 09:36.526 --> 09:39.310 or you look like you can't, because I would have no idea, 09:39.310 --> 09:40.611 obviously, by looking at you. 09:40.611 --> 09:43.436 I wouldn't know you only have a third of the strength 09:43.436 --> 09:46.300 of anybody else, you would have no idea. 09:46.300 --> 09:48.550 I mean, also I wouldn't have any idea 09:48.550 --> 09:50.259 how it impacts you from, 09:50.259 --> 09:52.030 I think about one of the big things we talk about 09:52.030 --> 09:53.770 is things like brain fog and stuff like that, 09:53.770 --> 09:55.780 where when you consume all your energy, 09:55.780 --> 09:58.690 what happens is your brain takes a break too, I'm guessing. 09:58.690 --> 10:00.100 Right, yes, yeah. 10:00.100 --> 10:03.040 It is definitely harder to process, 10:03.040 --> 10:05.650 and just as anyone, kind of tiredness, 10:05.650 --> 10:07.930 when you're extremely fatigued or extremely tired, 10:07.930 --> 10:10.150 it can affect you in lots of ways. 10:10.150 --> 10:12.469 And with my invisible disability, 10:12.469 --> 10:16.030 I actually tried to keep it invisible as much as I could 10:16.030 --> 10:17.500 for a really long time. 10:17.500 --> 10:22.240 I had bosses who knew and close friends who knew, 10:22.240 --> 10:24.880 and if it got to the point with someone 10:24.880 --> 10:28.480 where I couldn't hide it any longer, then I would tell them. 10:28.480 --> 10:32.740 But generally, I never liked to share or talk about it. 10:32.740 --> 10:35.110 I kind of just wanted to keep my, 10:35.110 --> 10:36.520 I felt like it was a struggle, 10:36.520 --> 10:39.580 and I wanted to keep it to myself 10:39.580 --> 10:42.250 and just kind of get through what I was trying to do. 10:42.250 --> 10:47.250 And so I only first started talking about it last September. 10:47.319 --> 10:50.140 I entered an inspirational speaking competition 10:50.140 --> 10:54.610 with a story about how my central core disease 10:54.610 --> 10:56.200 impacts my life. 10:56.200 --> 10:57.640 And that was the first time 10:57.640 --> 10:59.290 I'd ever spoken about it publicly. 10:59.290 --> 11:01.120 I had it on my social media, 11:01.120 --> 11:04.030 I was promoting it because it was a competition, 11:04.030 --> 11:06.520 and so people who I had worked with 11:06.520 --> 11:08.440 for more than five years, 11:08.440 --> 11:10.000 people who I went to high school with, 11:10.000 --> 11:12.910 and elementary school with, people from old jobs, 11:12.910 --> 11:15.810 like people, the most random intersection of people 11:15.810 --> 11:19.240 in my life, had no idea that when they knew me 11:19.240 --> 11:21.640 or if they still knew me, or still currently in my life, 11:21.640 --> 11:25.150 had no idea that I dealt with this on a daily basis. 11:25.150 --> 11:27.880 And so that was kind of like, 11:27.880 --> 11:31.577 it's amazing how invisible invisible disabilities can be. 11:31.577 --> 11:33.285 People can be right beside you 11:33.285 --> 11:36.220 or working alongside you or your friends, 11:36.220 --> 11:39.253 and people might have no idea what you're going through. 11:40.210 --> 11:41.440 So what was the reaction? 11:41.440 --> 11:43.120 How did people react when you shared? 11:43.120 --> 11:44.260 What was their response? 11:44.260 --> 11:46.630 Were you expecting a, I mean, think about it, 11:46.630 --> 11:48.477 you're like sharing your life, 11:48.477 --> 11:51.250 all of a sudden you're gonna tell people about something 11:51.250 --> 11:53.605 in your life that you've struggled with, 11:53.605 --> 11:57.100 you've tried to figure out how to manage, all these things. 11:57.100 --> 11:59.380 I mean, I'm guessing you probably thought, 11:59.380 --> 12:01.755 oh, I sure hope this comes across okay, 12:01.755 --> 12:03.730 and then all of a sudden people don't think less of me, 12:03.730 --> 12:04.563 right? 12:04.563 --> 12:05.980 Because we know that happens, right? 12:05.980 --> 12:07.600 We think about people with a disability, 12:07.600 --> 12:10.390 we think, oh, they're doing something wrong, 12:10.390 --> 12:14.620 maybe she should exercise more, why isn't she getting out? 12:14.620 --> 12:16.630 She just doesn't wanna come to my event, 12:16.630 --> 12:17.740 that's a big one, right? 12:17.740 --> 12:18.910 She doesn't wanna come to my event, 12:18.910 --> 12:21.730 she went to so-and-so's event, she must not like me. 12:21.730 --> 12:25.580 I was terrified of sharing it, I was kind of, 12:25.580 --> 12:29.050 I had to be talked into competing in the competition. 12:29.050 --> 12:31.630 And I started out very baby steps. 12:31.630 --> 12:34.240 I was like, okay, I'm going to wait, I'll write it, 12:34.240 --> 12:36.550 like I've heard about it, I'll write a speech. 12:36.550 --> 12:39.521 And then someone was like, okay, we'll just record it. 12:39.521 --> 12:42.070 And I was like, okay, I'll record it for myself, 12:42.070 --> 12:43.150 I've written it already. 12:43.150 --> 12:45.610 Let's see, I barely even take selfies 12:45.610 --> 12:48.070 or take videos of myself, so let's do that. 12:48.070 --> 12:49.877 And then they were like, you should just submit it, 12:49.877 --> 12:51.880 just admit it, just see what happens. 12:51.880 --> 12:53.200 And I was like, oh my goodness. 12:53.200 --> 12:55.540 And so I thought, okay, I've made it this far, 12:55.540 --> 12:58.450 I did all the work, I like writing, 12:58.450 --> 12:59.393 so I think that was part of it. 12:59.393 --> 13:01.930 I was just like, I'll do this as a creative exercise. 13:01.930 --> 13:03.340 And then I thought, okay, I did all the work, 13:03.340 --> 13:05.830 I might as well see this through and do it properly. 13:05.830 --> 13:08.950 And I submitted it and the whole weekend, I think, 13:08.950 --> 13:10.780 I submitted it on a Friday, 13:10.780 --> 13:13.450 and then on the Monday you're supposed to post it. 13:13.450 --> 13:16.900 And I was terrified that whole weekend. 13:16.900 --> 13:18.850 Like I was just like, this is gonna come out. 13:18.850 --> 13:20.740 I don't know what I thought was gonna happen 13:20.740 --> 13:22.180 or what the reaction was gonna be, 13:22.180 --> 13:24.700 I guess it was kind of fear of people 13:24.700 --> 13:26.740 are now gonna know this thing about me 13:26.740 --> 13:30.970 that they can't unknown and will just always be, 13:30.970 --> 13:33.010 like it is already always a part of me. 13:33.010 --> 13:35.110 But I was used to keeping it so inside 13:35.110 --> 13:38.230 and it was crazy to me that people would like, 13:38.230 --> 13:39.910 they're just gonna know this about me. 13:39.910 --> 13:42.250 Like maybe even before they meet me in person, 13:42.250 --> 13:44.470 if they happen to see the video. 13:44.470 --> 13:45.820 So that was a crazy concept. 13:45.820 --> 13:49.120 But I had the most amazing reaction to my speech,. 13:49.120 --> 13:51.340 I had no idea what was coming. 13:51.340 --> 13:53.560 And just the comments that were coming in, 13:53.560 --> 13:55.180 both from people in my life who were like, 13:55.180 --> 13:57.730 wow, we never would've guessed, you're amazing, 13:57.730 --> 13:59.320 I can't believe you do all this. 13:59.320 --> 14:02.200 One of my old coworkers actually said that, 14:02.200 --> 14:05.110 it's crazy I have 33% of the strength of the average person 14:05.110 --> 14:06.040 because I'm their most, 14:06.040 --> 14:08.260 well, I'm one of their most energetic friends. 14:08.260 --> 14:12.460 And I was like, that is a crazy concept, that was exciting. 14:12.460 --> 14:16.660 And then even the reaction of people from my Facebook group 14:16.660 --> 14:18.160 for people with central core disease, 14:18.160 --> 14:20.830 I think that was particularly touching 14:20.830 --> 14:22.426 and particularly rewarding. 14:22.426 --> 14:24.850 Because like I said, I've never met someone with it 14:24.850 --> 14:28.180 in person and I may never because it is a rare disease. 14:28.180 --> 14:30.910 But to hear the people in the Facebook group saying, 14:30.910 --> 14:33.670 we've struggled to tell people in our lives 14:33.670 --> 14:35.380 what it's like to live like this, 14:35.380 --> 14:36.910 or what it's like to live with our condition 14:36.910 --> 14:37.743 and what we deal with. 14:37.743 --> 14:40.900 And you've summarized it so well and illustrated it so well. 14:40.900 --> 14:42.820 I was like, oh my gosh, finally. 14:42.820 --> 14:46.180 There is something very special about people who know you 14:46.180 --> 14:49.330 and people who don't either way relating to your story, 14:49.330 --> 14:51.693 but people who have the same experiences 14:51.693 --> 14:54.735 and are seeing it reflected in a story that you're telling, 14:54.735 --> 14:56.773 that was really something else. 14:57.940 --> 14:58.970 Yeah, well that's pretty amazing. 14:58.970 --> 15:01.180 So tell me, how did you find out about 15:01.180 --> 15:02.503 Invisible Disabilities? 15:03.700 --> 15:06.490 Yeah, so I, with another speech 15:06.490 --> 15:08.410 for the inspirational speaking competition, 15:08.410 --> 15:09.818 it's called Speaker Slam, 15:09.818 --> 15:12.370 with another speech that I did in March, 15:12.370 --> 15:14.050 I actually came in second 15:14.050 --> 15:16.750 and I'm now going to the inspirational speaking 15:16.750 --> 15:21.130 grand finals, the Grand Slam in November in Toronto. 15:21.130 --> 15:21.963 I kind of thought, 15:21.963 --> 15:24.491 well, my invisible disability is out there, 15:24.491 --> 15:27.250 what else can I do with it, kind of, 15:27.250 --> 15:29.230 on the road to the Grand Slam? 15:29.230 --> 15:33.160 How can I make an impact or how can I use it for good? 15:33.160 --> 15:35.950 And I didn't really know what I was looking for. 15:35.950 --> 15:38.380 I was just kind of on Instagram one day 15:38.380 --> 15:41.290 and I put in the search bar Invisible Disabilities 15:41.290 --> 15:44.170 and Invisible Disabilities Association, of course, 15:44.170 --> 15:45.432 with Invisible Disabilities, 15:45.432 --> 15:47.770 this is the first account that came up 15:47.770 --> 15:49.920 and I didn't know it existed. 15:49.920 --> 15:54.820 I'm in Canada and I know that IDA is based in the States. 15:54.820 --> 15:56.200 So I'd never heard about it before. 15:56.200 --> 15:57.940 And I thought, well, this is perfect, 15:57.940 --> 15:59.950 this is like exactly what I'm looking for. 15:59.950 --> 16:02.200 And I don't really know still what I'm looking for, 16:02.200 --> 16:03.656 but I know that this is relevant to it. 16:03.656 --> 16:07.173 And this was the last week of April I believe. 16:07.173 --> 16:12.130 And then a few days later after I followed, 16:12.130 --> 16:14.830 I saw that the Walk and Roll was starting. 16:14.830 --> 16:18.370 And so I looked into that and I thought, this, this is it. 16:18.370 --> 16:21.460 It was very kind of universe telling me 16:21.460 --> 16:23.920 to go ahead and do something different. 16:23.920 --> 16:27.091 And I've never done a walking fundraiser, 16:27.091 --> 16:28.952 I've never done any kind of fundraiser before. 16:28.952 --> 16:31.870 But there was something about finding that 16:31.870 --> 16:33.010 at the perfect timing 16:33.010 --> 16:36.296 and it being what I was looking for without me knowing it, 16:36.296 --> 16:38.323 that just seemed like a perfect fit. 16:39.190 --> 16:42.910 Well, you know, yeah, we created the Walk and Roll-A-Thon 16:42.910 --> 16:44.800 so that anybody could participate. 16:44.800 --> 16:47.230 Because a lot of times you see walkathons 16:47.230 --> 16:48.670 or maybe a bikeathon or those things, 16:48.670 --> 16:51.940 but we wanted people to be able to walk, to roll, to trek, 16:51.940 --> 16:55.150 to skateboard, to roll in their wheelchair, 16:55.150 --> 16:58.540 to push a walker, to roll in their scooter, whatever it is, 16:58.540 --> 17:00.160 because we didn't wanna limit people. 17:00.160 --> 17:03.070 And that's why we set up one that's based upon steps. 17:03.070 --> 17:05.231 it's not like, I don't know if I'm gonna walk a mile 17:05.231 --> 17:07.060 or a kilometer or whatever that is, 17:07.060 --> 17:08.650 but I can walk steps, right? 17:08.650 --> 17:11.230 And so we set that up 17:11.230 --> 17:12.610 What's fascinating is you talk about, 17:12.610 --> 17:13.720 we're based here in the US, 17:13.720 --> 17:16.447 we founded the organization in 1996, 17:16.447 --> 17:19.450 and we launched our first website in 1997, 17:19.450 --> 17:21.310 and we were all over the world. 17:21.310 --> 17:25.150 I mean, we had articles in New Zealand and in Canada 17:25.150 --> 17:27.250 and Great Britain and other places. 17:27.250 --> 17:30.640 So yeah, it really is, even though we've been here, 17:30.640 --> 17:32.290 we've always been on the internet, 17:32.290 --> 17:33.400 which just means we really, 17:33.400 --> 17:35.440 it's impacting people around the world, right? 17:35.440 --> 17:37.990 There's no borders, no barriers. 17:37.990 --> 17:38.823 And as you well know, 17:38.823 --> 17:41.050 the disability is no respecter of anybody, right? 17:41.050 --> 17:42.763 Anybody can have a disability, 17:43.660 --> 17:45.700 and 80% of the people that have a disability, 17:45.700 --> 17:48.220 you can't see any assistive device. 17:48.220 --> 17:50.320 I mean, you don't usually use an assistive device, 17:50.320 --> 17:51.370 you might use a, 17:51.370 --> 17:52.900 I don't know if you use a walking cane ever, 17:52.900 --> 17:54.310 anything like that, but, you know- 17:54.310 --> 17:55.470 No. No, yes, 17:55.470 --> 17:57.310 So you would have no idea, right? 17:57.310 --> 17:59.380 So people just wonder why, 17:59.380 --> 18:01.360 well, she seems tired all the time, 18:01.360 --> 18:03.526 why can't she get out there and let's go do this 18:03.526 --> 18:05.345 10 mile hike? 18:05.345 --> 18:10.345 Talk about that, I did listen to your speech 18:10.896 --> 18:12.703 and you were talking about, 18:13.952 --> 18:18.952 you were having a date and tell us about what your date, 18:19.840 --> 18:21.787 you were in a park and what did your date wanna do, 18:21.787 --> 18:24.430 and tell me what happened on that. 18:24.430 --> 18:28.540 Yes, so I was on the second date with my now boyfriend 18:28.540 --> 18:30.910 and he suggested, we were in a park, 18:30.910 --> 18:33.940 we'd had a bit of a picnic on the grass by the lake, 18:33.940 --> 18:35.080 it was super cute. 18:35.080 --> 18:38.144 And then he says there's a hill that we should climb. 18:38.144 --> 18:40.780 He wanted to climb a hill to watch the sunset. 18:40.780 --> 18:42.640 And there's a shortcut that we can take 18:42.640 --> 18:44.410 that's a bit steeper and rockier, 18:44.410 --> 18:46.900 but then we don't have to go all the way, 18:46.900 --> 18:49.150 zipping around the paved path. 18:49.150 --> 18:52.720 And I didn't wanna seem afraid of a challenge at that point, 18:52.720 --> 18:54.730 it was very early on, only our second date. 18:54.730 --> 18:58.600 And I always do try to push myself for things 18:58.600 --> 19:01.630 that I want to do and tell myself that I can do. 19:01.630 --> 19:04.510 And so I thought, okay, I can take this hill, 19:04.510 --> 19:06.220 I can totally take this hill. 19:06.220 --> 19:09.040 And so we started ascending the hill 19:09.040 --> 19:11.710 and I was getting it, I was doing it. 19:11.710 --> 19:14.144 We got to the top of the hill, I was super excited, 19:14.144 --> 19:17.784 I was like, yes, we did it, my secret is safe, almost, 19:17.784 --> 19:19.450 'cause of course, my concern was, 19:19.450 --> 19:20.800 will I be able to make it up this hill? 19:20.800 --> 19:22.270 What's gonna happen? 19:22.270 --> 19:23.103 Am I gonna fall? 19:23.103 --> 19:25.330 And that will be more embarrassing than saying, 19:25.330 --> 19:27.130 let's take the long way around. 19:27.130 --> 19:28.780 But we made it up the hill. 19:28.780 --> 19:32.320 And as we start walking on the smoother ground, 19:32.320 --> 19:34.870 I'm starting to feel really hot and dizzy. 19:34.870 --> 19:37.720 And I realize that is the same kind of feeling 19:37.720 --> 19:40.690 I've had when I've fainted before from overexerting. 19:40.690 --> 19:45.190 And so I start slowing down and my now boyfriend, 19:45.190 --> 19:46.600 he can tell something is off. 19:46.600 --> 19:48.640 And so he's like, do you wanna sit down for a bit? 19:48.640 --> 19:51.190 And I just kind of nod and he sets up the picnic blanket 19:51.190 --> 19:54.430 on the side of the hill, and I am now like, 19:54.430 --> 19:56.920 I wish we should have taken the long way around. 19:56.920 --> 19:58.840 I totally pushed myself. 19:58.840 --> 20:03.625 And now I felt like I had to explain why. 20:03.625 --> 20:08.625 I wanted to kind of take control of the situation 20:09.351 --> 20:11.380 and what was happening and explain. 20:11.380 --> 20:13.326 So I was really scared to tell him 20:13.326 --> 20:16.000 as I was talking about my disability. 20:16.000 --> 20:17.950 And I thought it was gonna scare him off. 20:17.950 --> 20:21.130 But he was really understanding, he was touched. 20:21.130 --> 20:23.260 He said later on that he actually felt like 20:23.260 --> 20:25.660 it brought us closer, that I shared that with him, 20:25.660 --> 20:27.220 and he was really glad. 20:27.220 --> 20:29.818 And of course, he was now able to plan dates 20:29.818 --> 20:32.860 or plan things that were accessible for me. 20:32.860 --> 20:34.480 And now that he knew that, 20:34.480 --> 20:35.740 of course he wanted to do that, 20:35.740 --> 20:39.130 and he wanted to consider me in what we were doing. 20:39.130 --> 20:42.630 So it definitely, as scared as I was to bring that up 20:42.630 --> 20:43.510 to a new partner, 20:43.510 --> 20:46.030 it was definitely something that brought us closer together 20:46.030 --> 20:48.013 and gave us more understanding. 20:48.880 --> 20:51.070 Well, you know, I mean obviously I can really relate 20:51.070 --> 20:51.903 to that. 20:51.903 --> 20:54.670 My wife, Sherry she's had MS and Lyme Disease 20:54.670 --> 20:58.000 and has been unable to work since she was 27 years old. 20:58.000 --> 21:00.637 And everything we do, we have to plan around that, 21:00.637 --> 21:03.969 and she told me right when we first started dating, right? 21:03.969 --> 21:06.139 I mean it was one of the first, 21:06.139 --> 21:07.960 kind of our first official group date, 21:07.960 --> 21:09.100 we went out with a bunch of people 21:09.100 --> 21:11.800 and she just laid it out on the line. 21:11.800 --> 21:12.790 Because what happened is, 21:12.790 --> 21:14.410 is yeah, there are people that do leave, 21:14.410 --> 21:16.319 there are people that can't handle it 21:16.319 --> 21:18.280 and disappear and those things. 21:18.280 --> 21:19.720 And she was having that experience 21:19.720 --> 21:22.690 because she wasn't sharing with 'em right up front, right? 21:22.690 --> 21:25.780 So that was a really smart move on your part. 21:25.780 --> 21:28.120 But ultimately, your energy, 21:28.120 --> 21:31.180 what you can do is based upon where you're at, 21:31.180 --> 21:32.950 not what I think you can do. 21:32.950 --> 21:34.660 And I'm sure there's times you're thinking, 21:34.660 --> 21:35.860 yeah, I'm gonna push myself, 21:35.860 --> 21:38.560 but you can push yourself as hard as you want, 21:38.560 --> 21:39.484 but you still have a limitation 21:39.484 --> 21:42.250 that you have to be honest with, right? 21:42.250 --> 21:43.083 You know, if somebody says, 21:43.083 --> 21:44.500 hey, let's go run a 5K, 21:44.500 --> 21:47.533 you're like, yeah, probably not gonna happen, 21:48.828 --> 21:50.875 I'll do it over a week. 21:50.875 --> 21:53.350 kinda like we're good with Walk and Roll-A-Thon. 21:53.350 --> 21:57.130 But people have to be understanding about that. 21:57.130 --> 21:58.473 Our vision at Invisible Disabilities 21:58.473 --> 22:00.580 is called Invisible No More. 22:00.580 --> 22:03.417 And what that means is we should treat everybody the same, 22:03.417 --> 22:05.143 that's part of your life, 22:06.340 --> 22:09.280 disabilities are not necessarily what defines us 22:09.280 --> 22:12.610 in the sense of you're not central core disease, 22:12.610 --> 22:16.150 but it is part of your life, it is part of something, 22:16.150 --> 22:18.465 and we need to be honest about that too, right? 22:18.465 --> 22:20.620 Sometimes I think that people forget that. 22:20.620 --> 22:22.570 They think, well if you can only do this 22:22.570 --> 22:24.679 or you just get out of bed or all these things, 22:24.679 --> 22:28.840 it's like, no, I have my limitations, I know what they are. 22:28.840 --> 22:30.760 There'll be times I might push myself, 22:30.760 --> 22:33.247 but I'm gonna pay for it, like you said, you know? 22:33.247 --> 22:36.010 I know people that do that, they have a good day 22:36.010 --> 22:38.680 and they push it and then they're down for the count 22:38.680 --> 22:40.000 for like a week, right? 22:40.000 --> 22:42.410 Yes, yeah, there's definitely even things 22:42.410 --> 22:45.968 that I want to do that I have to choose between, 22:45.968 --> 22:47.647 I can think of so many examples of, 22:47.647 --> 22:50.546 actually I think it was last year after the festival 22:50.546 --> 22:54.430 that I ran, it's over Thursday, Friday and Saturday. 22:54.430 --> 22:59.430 And so long hours, 16 hours or so days that I can do it 22:59.560 --> 23:01.960 because I'm running on adrenaline during the weekend. 23:01.960 --> 23:04.630 But then it takes me about a week to recover. 23:04.630 --> 23:05.696 And the following weekend 23:05.696 --> 23:09.220 was my friend's son's first birthday party 23:09.220 --> 23:11.290 that I hadn't fully committed to. 23:11.290 --> 23:13.586 I was like, it usually takes me about a week to recover 23:13.586 --> 23:16.090 from the festival, so let me see how I'm feeling, 23:16.090 --> 23:19.030 I really want to come, of course, a close friend, 23:19.030 --> 23:21.130 her first son, it's his first birthday, 23:21.130 --> 23:22.750 I really wanted to go. 23:22.750 --> 23:25.720 And then by the time of day came, the next Saturday, 23:25.720 --> 23:27.698 I was still so sore and I was still so tired 23:27.698 --> 23:29.710 and I had to tell her, I was like, you know, 23:29.710 --> 23:32.542 I really, I really wanted to come, I was really excited, 23:32.542 --> 23:35.050 but I can barely move, 23:35.050 --> 23:36.880 I had really just had to stay home today. 23:36.880 --> 23:41.880 And so that was kind of sad, that was disappointing. 23:42.056 --> 23:46.471 And that was disappointing to have to make that choice 23:46.471 --> 23:49.851 between something that I wanna do, the festival, 23:49.851 --> 23:51.550 and then something that I also wanna do 23:51.550 --> 23:53.170 that's a full week later, 23:53.170 --> 23:55.330 that I thought maybe I could pull it together 23:55.330 --> 23:58.660 and get through, but kind of accepting that my body 23:58.660 --> 24:01.090 has to take breaks now and then 24:01.090 --> 24:02.920 and takes a little longer to recover. 24:02.920 --> 24:05.767 And that I can't do everything I wanna do as much 24:05.767 --> 24:07.003 as I wanna do it. 24:08.200 --> 24:11.740 Well this is where that relationship with a friend, 24:11.740 --> 24:14.440 you have a chance to share what you're going through, 24:14.440 --> 24:16.779 and so it's creating that understanding. 24:16.779 --> 24:20.590 We talk about it here at Invisible Disabilities, 24:20.590 --> 24:23.858 where when you invite somebody to Thanksgiving for example, 24:23.858 --> 24:25.540 which we have in the States here, 24:25.540 --> 24:28.990 it's like, it's okay to set up a time with 'em, 24:28.990 --> 24:30.430 say it's okay for them to say no 24:30.430 --> 24:32.770 and maybe say no almost every time, right? 24:32.770 --> 24:35.355 And then when they do show up to whatever the party is 24:35.355 --> 24:36.760 or the event, 24:36.760 --> 24:38.470 don't make the assumption that they did it 24:38.470 --> 24:39.610 because they're doing better, 24:39.610 --> 24:41.920 they did it because they wanna spend time with you, right? 24:41.920 --> 24:42.753 Yes. 24:42.753 --> 24:46.180 And so it's. you must be doing great and everything. 24:46.180 --> 24:48.910 It's like, no, I'm gonna be wiped out for another week here, 24:48.910 --> 24:50.830 but I just had to do this. 24:50.830 --> 24:54.334 Well, that honesty and allowing people 24:54.334 --> 24:56.770 and feeling safe to be able to do that, 24:56.770 --> 24:57.640 you were able to share. 24:57.640 --> 25:01.442 It's like, hey, this is just how it is, 25:01.442 --> 25:03.547 and they're like, okay, I'm your friend, 25:03.547 --> 25:04.810 now I understand that, 25:04.810 --> 25:08.140 'cause there's gonna be times that that's gonna be an issue. 25:08.140 --> 25:10.450 Yeah, I'm very lucky that I generally have 25:10.450 --> 25:12.583 very understanding friends and family. 25:12.583 --> 25:15.266 But I think it's still something I struggle with 25:15.266 --> 25:17.050 in terms of, like, for example, 25:17.050 --> 25:19.150 I show up to things as much as I can, 25:19.150 --> 25:22.210 but sometimes I'm late and people might just think, 25:22.210 --> 25:25.058 oh, Lauren's always late, she's running late again. 25:25.058 --> 25:27.190 But people don't realize that sometimes 25:27.190 --> 25:28.270 a lot of the time I'm late 25:28.270 --> 25:31.120 because I'm dealing with daily fatigue and body pain 25:31.120 --> 25:33.610 and I'm just moving slower that day 25:33.610 --> 25:35.410 because maybe I did something the day before, 25:35.410 --> 25:37.450 or maybe I'm just having an off day 25:37.450 --> 25:39.490 and it's taking me a little longer to get going 25:39.490 --> 25:41.655 and I'm also sometimes overly optimistic 25:41.655 --> 25:44.740 about what I can handle and achieve that day. 25:44.740 --> 25:46.810 So I'll always show up, I wanna show up, 25:46.810 --> 25:48.490 I'm just sometimes a little bit late 25:48.490 --> 25:51.400 because I'm battling my body with it. 25:51.400 --> 25:53.200 Well, and I think that's great 25:53.200 --> 25:55.420 and I think that your willingness to share this even here 25:55.420 --> 25:58.702 and how it's gonna benefit a lot of people to understand 25:58.702 --> 26:01.174 that hey, they're not alone, right? 26:01.174 --> 26:03.160 Disability impacts anywhere from 26:03.160 --> 26:05.770 15 to 20% of the population, 26:05.770 --> 26:08.443 invisible disability is about 80% of that. 26:09.343 --> 26:12.430 You can't tell by looking at somebody 26:12.430 --> 26:14.020 and it's really up to them to share 26:14.020 --> 26:15.550 what they're going through. 26:15.550 --> 26:18.100 And I always say, hey, if you wanna know about it, you know, 26:18.100 --> 26:20.140 it's like, well what is central core disease? 26:20.140 --> 26:21.370 What is that? 26:21.370 --> 26:24.190 And if a friend is a friend, they'll say, tell me about it, 26:24.190 --> 26:26.650 I wanna know, I don't know what it is and share with me. 26:26.650 --> 26:29.590 And it gives you an opportunity to really share with them. 26:29.590 --> 26:30.880 And there's gonna be times, 26:30.880 --> 26:32.800 and I would guess in other people's lives, 26:32.800 --> 26:35.020 where all of a sudden your empathy is so huge 26:35.020 --> 26:37.450 because you're like, oh my goodness, 26:37.450 --> 26:38.320 what you're going through, 26:38.320 --> 26:40.188 I understand in some sense, right? 26:40.188 --> 26:41.950 And it's not always... 26:41.950 --> 26:43.270 I always like say, unless you've been there, 26:43.270 --> 26:44.890 you don't really know, 26:44.890 --> 26:46.240 I can't understand the pain 26:46.240 --> 26:48.550 that my wife is in on a daily basis. 26:48.550 --> 26:50.890 I mean, her pain scale, it might be a four 26:50.890 --> 26:52.503 and on me it would be like a 20, 26:52.503 --> 26:56.020 I would be out cold from the pain that she has to deal with. 26:56.020 --> 26:58.600 But it is just trying to each day, 26:58.600 --> 27:01.210 to understand how you value a person, right. 27:01.210 --> 27:05.020 Because really it's your value that's most important, 27:05.020 --> 27:06.881 and that value is not based upon what you can do 27:06.881 --> 27:09.640 or can't do, it's you as a person. 27:09.640 --> 27:12.310 We call this the "InVisible InCourage Podcast," 27:12.310 --> 27:15.250 so what we always like to do is ask our guests, 27:15.250 --> 27:17.393 what gives you courage to make it through the day? 27:17.393 --> 27:19.300 And it's not about making it through 27:19.300 --> 27:21.319 like your festival over a three day weekend 27:21.319 --> 27:22.960 or through that whole season 27:22.960 --> 27:25.900 or making it through the week or the year, 27:25.900 --> 27:27.933 what does it take just to get through the day? 27:29.020 --> 27:31.030 Yeah, so to get through the day, 27:31.030 --> 27:33.940 I think I actually never thought about it as courage. 27:33.940 --> 27:36.520 I kind of have always just been, 27:36.520 --> 27:38.440 this is my life, this is where I'm at, 27:38.440 --> 27:40.865 and I just have to get through it. 27:40.865 --> 27:43.870 If I want to have a certain kind of day 27:43.870 --> 27:46.000 or if there's things I want to do, 27:46.000 --> 27:48.460 I feel like I've never really thought about it, 27:48.460 --> 27:50.890 I've always just kind of done them. 27:50.890 --> 27:52.567 And so it's actually kind of exciting 27:52.567 --> 27:56.980 and feels good to hear that it, yes, like, 27:56.980 --> 27:58.630 I mean, externally when I think about it, 27:58.630 --> 28:01.082 of course people with invisible disabilities 28:01.082 --> 28:03.520 or visible disabilities have a lot of courage 28:03.520 --> 28:04.960 to deal with what they're dealing with. 28:04.960 --> 28:08.503 And somehow I never really thought to apply that to myself. 28:09.490 --> 28:10.930 So I just never, I was just like, 28:10.930 --> 28:12.670 this is my life and this is where I'm at. 28:12.670 --> 28:15.751 But I think just keeping moving forward 28:15.751 --> 28:18.463 is really what kind of does it for me. 28:19.630 --> 28:21.610 Well we're so thankful to have you 28:21.610 --> 28:24.100 on this "InVisible InCourage Podcast," 28:24.100 --> 28:26.290 and for walking and rolling and getting people excited. 28:26.290 --> 28:28.241 We can't wait to hear about your next speech 28:28.241 --> 28:32.197 and hopefully you'll be winning the Slam 28:32.197 --> 28:34.240 and you got a great story. 28:34.240 --> 28:35.920 And it's just amazing that your opportunity 28:35.920 --> 28:38.800 to share the story, how the impact it has on others. 28:38.800 --> 28:40.810 And like you said, it really makes a difference 28:40.810 --> 28:42.190 and we really appreciate it. 28:42.190 --> 28:44.620 And thank you so much Lauren for being on here. 28:44.620 --> 28:47.170 Thank you so much for having me, this was so much fun. 28:47.170 --> 28:49.420 I'm so honored to be a part of the Walk and Roll, 28:49.420 --> 28:51.750 and to be here right now, thank you so much. 28:51.750 --> 28:54.333 (upbeat music)