WEBVTT 1 00:00:00.160 --> 00:00:03.480 The topics and opinions expressed on the following show are solely those of the hosts 2 00:00:03.480 --> 00:00:06.719 and their guests, and not those of W four WN Radio It's employees or 3 00:00:06.719 --> 00:00:11.000 affiliates. We make no recommendations or endorsements for radio show programs, services, 4 00:00:11.039 --> 00:00:14.839 or products mentioned on air or on our web. No liability, explicit or 5 00:00:14.960 --> 00:00:19.199 implied shall be extended to W four WN Radio It's employees or affiliates. Any 6 00:00:19.280 --> 00:00:22.480 questions or comment should be directed to those show hosts. Thank you for choosing 7 00:00:22.559 --> 00:00:46.640 W four WN Radio. Hello and welcome to Fearless Fabulous You. I am 8 00:00:46.679 --> 00:00:51.479 your host, Melanie Young, and it is a beautiful day in December twenty 9 00:00:51.520 --> 00:00:57.600 twenty three. We are happy to be reigning in a new year, and 10 00:00:58.119 --> 00:01:03.359 I am really excited about twenty twenty four, really excited. If you follow 11 00:01:03.399 --> 00:01:08.200 me, you know that I am all about spotlighting amazing women with inspiring stories 12 00:01:08.239 --> 00:01:14.120 who've overcome odds, changed their lives and have set their course in a new 13 00:01:14.159 --> 00:01:19.959 direction. And gosh, I've done it so many times myself. I'm going 14 00:01:19.040 --> 00:01:23.840 to be doing it again too. In a big announcement. So this show 15 00:01:25.000 --> 00:01:30.560 is going to spotlight someone who simply has the most amazing story. Really, 16 00:01:30.879 --> 00:01:34.879 here's how I'm going to set it up. She's a competitive paraserver, a 17 00:01:34.920 --> 00:01:41.879 golfer, a photographer, a philanthropist, an advocate, and the author of 18 00:01:41.879 --> 00:01:47.480 a book called Rough Waters, From Surviving to Thriving with Progressive Muscular Dystrophee. 19 00:01:48.239 --> 00:01:52.840 At age thirty four, Heather C. Markham received a life changing diagnosis. 20 00:01:52.959 --> 00:01:57.959 She had progressive muscular dystrophee that would eventually require her using a wheelchair. Her 21 00:01:59.000 --> 00:02:02.079 walking days were going to end much sooner than she'd expected. Now, I 22 00:02:02.239 --> 00:02:07.280 know people in this situation, and it is hard to live with the progressive 23 00:02:07.159 --> 00:02:14.919 illness. But despite her body's betrayal, because her body was betraying her, 24 00:02:14.919 --> 00:02:16.680 but her mind is strong, and you have to remember, just because your 25 00:02:16.719 --> 00:02:23.560 body is betraying you, your mind can be amazingly strong. Heather fearlessly leaned 26 00:02:23.639 --> 00:02:29.840 into adventure with a capital a performing as a belly dancer, falling in love, 27 00:02:29.960 --> 00:02:35.680 becoming an avid paras server pretty Awesome, winning Missus Wheelchair Kentucky, and 28 00:02:35.719 --> 00:02:43.080 pursuing her lifelong passion of photography. She shares her story with heartbreaking humor and 29 00:02:43.120 --> 00:02:47.800 a lot of big reveals in Rough Orders From Surviving to thriving with Progressive Muscular 30 00:02:47.840 --> 00:02:52.319 District Fee and I'm really honored to have her joining me today. I'm fearless, 31 00:02:52.360 --> 00:02:57.879 fabulous. You welcome, Heather. Thank you so much for that amazing 32 00:02:57.960 --> 00:03:05.120 introduction. I am honored to be here and having the opportunity to have this 33 00:03:05.159 --> 00:03:07.919 really great conversation with you. Thank you well. As I read your book, 34 00:03:07.919 --> 00:03:13.080 I was in Hawaii watching surfers and I was like, my god, 35 00:03:13.240 --> 00:03:15.800 I can't imagine. You know, I can't even get on a surfboard. 36 00:03:15.639 --> 00:03:22.919 And I have a very good friend in the restaurant business who is a huge 37 00:03:23.039 --> 00:03:30.159 advocate for those who wheelchair users. He founded an organization called Wheeling Forward. 38 00:03:30.240 --> 00:03:35.319 His name is Sianic Benjamin and he just won a Michelin Store for his restaurant 39 00:03:35.360 --> 00:03:42.599 contento, which really takes advocacy for those with disabilities to the highest level possible 40 00:03:42.680 --> 00:03:46.919 with a totally retrofitted restaurant to help everybody. And I have a huge sensitivity 41 00:03:46.960 --> 00:03:52.800 for it because in New York it's not easy to get around in a wheelchairs. 42 00:03:52.840 --> 00:03:55.280 In most places it's not. But before we get into that, I 43 00:03:55.319 --> 00:04:00.639 want you to share your story. You can from a back ground where you 44 00:04:00.639 --> 00:04:05.280 moved around a lot talk to us about your family and your childhood. Sure. 45 00:04:05.479 --> 00:04:11.759 So my dad was in the military, and like a typical military brat 46 00:04:11.800 --> 00:04:16.560 as we're called, right, we moved every few years. I mean in 47 00:04:16.600 --> 00:04:23.879 the seventies it was three and out like you. And so that constant moving 48 00:04:23.959 --> 00:04:30.360 that gave me the opportunity to learn how to reinvent myself. Right, So 49 00:04:30.439 --> 00:04:35.560 you learn how to adapt to your situations. You learn quickly how to size 50 00:04:35.600 --> 00:04:42.839 things up and figure out if you're going to fit in, and how to 51 00:04:43.000 --> 00:04:49.319 change your self to fit the environment. Can you give some examples? Oh? 52 00:04:49.560 --> 00:04:58.600 Sure? So I was held back in school because of my October birthday. 53 00:04:58.759 --> 00:05:01.600 So I was seven years old in first grade, like I was really 54 00:05:01.680 --> 00:05:08.240 old to be in first grade. But what my teacher did was she actually 55 00:05:08.480 --> 00:05:11.879 gave me my dictation words on a tape recorder and sent me out for the 56 00:05:11.879 --> 00:05:16.199 teacher's lunge and then had me reading to the other students. Well, that's 57 00:05:16.240 --> 00:05:21.560 a recipe to get yourself beat up at recess, so you know, you 58 00:05:21.639 --> 00:05:27.040 figure out how to down I figured out how to downplay that so that I 59 00:05:27.079 --> 00:05:32.079 would fit in with my peers. That skip that being held back meant that 60 00:05:32.120 --> 00:05:35.519 when we moved. I skipped a grade, so now I was really young 61 00:05:35.639 --> 00:05:42.160 to be in third grade. And once again you figure out how to fit 62 00:05:42.240 --> 00:05:45.680 in, and you go, okay, well, I'm an Air Force rat 63 00:05:45.800 --> 00:05:49.160 living at west Point. They the US Military Academy, which is the Army 64 00:05:49.240 --> 00:05:54.560 school. How do you not run your mouth that gets you beat up? 65 00:05:54.639 --> 00:05:58.560 That, you know, because I was raised Air Force rules and Army sucks. 66 00:05:58.600 --> 00:06:00.759 Well, you say that as a third grader living at West Point, 67 00:06:00.759 --> 00:06:03.920 you're going to get your faith beaten in. So you learned how to not 68 00:06:04.040 --> 00:06:09.839 say that kind of stuff. But in the meanwhile, you know, I 69 00:06:09.879 --> 00:06:13.199 played the kids in the neighborhood and and we all figured out how to, 70 00:06:14.000 --> 00:06:18.600 you know, make that work. But the constant moving meant that when I 71 00:06:18.600 --> 00:06:27.399 would fall down and get hurt, and there wasn't a lot of consistency in 72 00:06:27.439 --> 00:06:30.879 the medical treatment. Right, Mom noticed that I wasn't healing very quickly, 73 00:06:32.240 --> 00:06:35.399 but that I was like getting hurt a lot. And how old were you 74 00:06:35.439 --> 00:06:42.079 when you were falling down? Heather? Oh gosh. Mom called me her 75 00:06:42.120 --> 00:06:48.120 clumsy child, so I was probably always falling down. I mean I had 76 00:06:48.399 --> 00:06:55.319 broken bones at the age of six. I grot my mom at six, 77 00:06:55.480 --> 00:07:00.560 just falling so and Mom called me her brittle boned girl because it was just 78 00:07:00.680 --> 00:07:05.639 kind of strange but muscular dist to be is genetic, and but no one 79 00:07:05.680 --> 00:07:09.839 else in my family had it, so there was no reason to suspect anything. 80 00:07:12.439 --> 00:07:16.000 And when we finally in that year that we were at West Point, 81 00:07:16.199 --> 00:07:24.480 I was at the er once a month with something. And it was really 82 00:07:24.519 --> 00:07:30.360 surprising to me looking back, of course that like child Protective Services wasn't called 83 00:07:30.399 --> 00:07:36.120 in, you know, because nowadays with that kind of a medical record, 84 00:07:36.759 --> 00:07:40.720 you know that absolutely there would have been, you know, there would be 85 00:07:40.839 --> 00:07:46.879 huge scrutiny. But we shared our medical records, and I say, there 86 00:07:46.959 --> 00:07:53.279 just wasn't that necessarily necessary follow through, say, not that anyone would have 87 00:07:53.319 --> 00:08:01.000 suspected anything. So were you close to your parents? Yeah, m hm. 88 00:08:03.120 --> 00:08:07.240 I My mom worked really hard to make sure that she was around for 89 00:08:07.319 --> 00:08:13.800 us. So she worked nights in the hotel industry, and she thought that 90 00:08:13.839 --> 00:08:18.279 my dad should be more involved. And so my dad was the cookie mother 91 00:08:18.439 --> 00:08:22.600 for our girl, for my girl Scout troops m and he was the person 92 00:08:22.680 --> 00:08:28.360 who took me on road trips so that I could travel for tennis. I 93 00:08:28.439 --> 00:08:31.720 was a I was championship ranked in the state of Texas and the girls twelve 94 00:08:31.759 --> 00:08:39.440 and hunders and we were all over the state of Texas. So and they 95 00:08:39.519 --> 00:08:43.639 supported what I did. They supported orchestra, and they supported my being in 96 00:08:43.639 --> 00:08:52.120 school plays and you know that kind and support it. So I would say, 97 00:08:52.200 --> 00:08:56.919 yes, does that make sense? Yeah? No, I just was 98 00:08:56.000 --> 00:09:01.200 curious because you know, it's rocky. I mean, you're if I had 99 00:09:01.200 --> 00:09:07.360 a child that was getting injured a lot, I'd be like doing a lot 100 00:09:07.399 --> 00:09:09.759 to find out what the hell's going on, you know, But you're moving 101 00:09:09.799 --> 00:09:13.240 around a lot. It's probably hard to have relationships, as what I'm thinking, 102 00:09:13.240 --> 00:09:18.440 when you're moving around a lot. Right, Yes, it's it's very 103 00:09:18.480 --> 00:09:24.440 interesting because there's not a lot to clinge it, right, I mean you 104 00:09:24.600 --> 00:09:31.240 kind of just you know, your family is the stable thing in your life, 105 00:09:31.519 --> 00:09:35.440 and you learn quickly how to make friends and let go and move on. 106 00:09:37.639 --> 00:09:41.320 And I have a few friends from I actually have a few friends from 107 00:09:41.360 --> 00:09:46.799 elementary school, but I still chat with online, which is fairly amazing. 108 00:09:48.480 --> 00:09:54.279 But it's moving around that much taught me how to recognize who to keep and 109 00:09:54.320 --> 00:10:00.039 who to let go of. That's interesting. I've heard that I've interviewed a 110 00:10:00.080 --> 00:10:03.360 couple of people that have come from military families, and they've most said that 111 00:10:03.399 --> 00:10:07.480 the you know, establishing long term relationships could be hard, but you kind 112 00:10:07.480 --> 00:10:16.799 of select and choose as you go. So at what point did the reality 113 00:10:16.039 --> 00:10:20.200 was that you really had something that was not right with you, and you 114 00:10:20.960 --> 00:10:28.720 sought further doctors to see what was wrong. So I injured my back at 115 00:10:28.720 --> 00:10:35.759 the age of twenty two when I was working custodio, and that seemed to 116 00:10:35.759 --> 00:10:41.639 set off this whole cascade of things in my body. There's been some research 117 00:10:41.799 --> 00:10:52.840 that supports the idea of a traumatic event triggering a genetic condition, and so 118 00:10:54.759 --> 00:11:00.960 that injury was severe enough that I was out of work and I was seen 119 00:11:01.039 --> 00:11:03.639 by a lot, a lot of a lot of a lot of doctors. 120 00:11:05.399 --> 00:11:13.200 Unfortunately, how my symptoms presented didn't look like a typical back injury, and 121 00:11:13.320 --> 00:11:18.879 so they would send me out to physical therapy and I would get better as 122 00:11:18.919 --> 00:11:26.960 quickly as they thought I should, or the exercises that the physical therapists having 123 00:11:26.960 --> 00:11:35.639 to do would fatigue me quickly to everyone's surprise. And so as time went 124 00:11:35.720 --> 00:11:39.159 on, I actually had doctors say to me, two of them actually, 125 00:11:39.240 --> 00:11:43.240 one who said, if you hate your job, this much, and because 126 00:11:43.279 --> 00:11:48.000 I was working with serdial, he said, if you hate your job as 127 00:11:48.039 --> 00:11:54.639 much, you should quit rather than take an injury, which was, you 128 00:11:54.679 --> 00:12:01.000 know, just really strange to me. Yeah. And another doctor who after 129 00:12:01.159 --> 00:12:05.320 rounds of physical therapy I wasn't really progressing very well, he said, I'm 130 00:12:05.360 --> 00:12:09.440 just going to tell the company that you're faking it. Oh God, And 131 00:12:09.519 --> 00:12:13.759 I just started to cry and he said, see, aren't those tears just 132 00:12:13.799 --> 00:12:18.279 really it's a relief. You don't have to lie anymore. And I said, 133 00:12:18.679 --> 00:12:24.440 you know there's something wrong, and just because you don't understand it doesn't 134 00:12:24.480 --> 00:12:31.480 mean it's not true. And I'm gonna I'm gonna say something really snarky. 135 00:12:31.559 --> 00:12:33.480 So I'm just gonna I'm going to give you a snark alert right here. 136 00:12:33.919 --> 00:12:39.440 Snark alert. Okay, snark alert. He's dead of a brain tumor and 137 00:12:39.480 --> 00:12:45.440 I'm still here. Wow. So the snark is I win. So that 138 00:12:45.559 --> 00:12:48.639 the bottom line is you you know, first of all, the bottom line 139 00:12:48.679 --> 00:12:54.120 is you have to be your own advocate when you deal with the medical profession. 140 00:12:54.799 --> 00:12:56.799 If you and you have to push, and you had to push a 141 00:12:56.840 --> 00:13:01.120 lot, you had to push a lot because it was yours was a tough 142 00:13:01.200 --> 00:13:09.360 diagnosis to nail down. And I am not an expert on must muscular dystrophe, 143 00:13:09.399 --> 00:13:13.440 but you have something called limb girdle muscular dystrophe. So I would assume, 144 00:13:13.559 --> 00:13:16.840 like you know, I'm a breast cancer survivor, so there's emptying different 145 00:13:16.919 --> 00:13:22.320 kinds of breast cancer. So I would safely say there's different kinds of muscular 146 00:13:22.360 --> 00:13:26.039 dystrophe. So you had to nail down what you had in order to figure 147 00:13:26.039 --> 00:13:31.720 out how to treat it right. Right. So when I was first diagnosed 148 00:13:31.480 --> 00:13:37.080 in two thousand and two, so we are a long way down the road 149 00:13:37.120 --> 00:13:43.399 by now, there were no specifics about limb girdle muscular dystrope. All they 150 00:13:43.480 --> 00:13:48.440 said was we get a muscle buyout. See, we recognize that it's in 151 00:13:48.480 --> 00:13:54.039 the muscular district be family, but it's nothing that we can nail down. 152 00:13:54.159 --> 00:14:00.320 It's not als, it's not dushen, it's not my physiogravits, which is 153 00:14:00.360 --> 00:14:05.120 a muscot district like, it's not one of those. So we're just going 154 00:14:05.200 --> 00:14:07.080 to call it a limb girdle mustardst to be it's it's going to take out 155 00:14:07.080 --> 00:14:11.200 your hips in your shoulders, but it's really kind of just a garbage hand 156 00:14:11.240 --> 00:14:13.200 term. This is these are the words the doctor said to me. It's 157 00:14:13.200 --> 00:14:20.639 a garbage hand term. So what I like, that's a that's kind of 158 00:14:20.679 --> 00:14:24.039 spooky because you know, because you really want to know what's going to happen 159 00:14:24.120 --> 00:14:28.559 to me. I mean, you've basically been told you have a degenerative illness 160 00:14:28.600 --> 00:14:31.759 and your body is going to disintegrate, and you're like, can you give 161 00:14:31.799 --> 00:14:35.039 me a time frame? Can you give me? Like? What? Like, 162 00:14:35.879 --> 00:14:39.120 I'm trying to put myself in your shoes because I mean, when I 163 00:14:39.240 --> 00:14:43.679 was diagnosed with breast cancer, I had a million questions like what is going 164 00:14:43.679 --> 00:14:50.240 to happen? And and then there's those variables. So at what point did 165 00:14:50.279 --> 00:14:56.000 you go from, for example, walking with a cane to having to get 166 00:14:56.039 --> 00:15:00.000 a wheelchair to realizing your shoulders were going what is the how is the progression 167 00:15:00.120 --> 00:15:07.039 happening? And where are you now in this sure So I was walking with 168 00:15:07.120 --> 00:15:13.759 a cane due to back pain and losing my So part of the musk hearestry 169 00:15:15.399 --> 00:15:22.159 subtype that I have means that the long muscles that go from the bottom of 170 00:15:22.200 --> 00:15:26.879 your ribs down to your knees are actually the ones that help you stand up 171 00:15:26.000 --> 00:15:31.279 straight. So that set of muscles is actually getting weak. So I was 172 00:15:31.320 --> 00:15:37.200 getting more and more bent over. I started using a cane on and off 173 00:15:39.039 --> 00:15:48.960 in oh gosh, let's see nineteen ninety, as early as nineteen ninety, 174 00:15:50.759 --> 00:15:56.080 and I got my first wheelchair in two thousand and eight. Now, the 175 00:15:56.120 --> 00:16:02.279 literature that I got in twenty in two thousand and two said limburtle mustard just 176 00:16:02.279 --> 00:16:06.919 to be typically progressed, so that the user ends up with a wheelchair twenty 177 00:16:07.000 --> 00:16:12.120 years after onset, and so I kind of did the math and thought that 178 00:16:12.320 --> 00:16:15.639 I might end up with an extra couple of years in there. I thought 179 00:16:15.639 --> 00:16:22.039 I might have my first wheelchair about twenty ten. But I had gone, 180 00:16:22.240 --> 00:16:30.679 I had run the whole progression from Cain to Cain with ankle foot or foci 181 00:16:30.840 --> 00:16:37.279 supports because I had foot drops and was dragging my toes and falling down to 182 00:16:37.399 --> 00:16:41.360 getting a roll later, which is one of those walkers that with wheels in 183 00:16:41.399 --> 00:16:45.519 a seat that you can buy at the costco, right right, yeah. 184 00:16:45.600 --> 00:16:52.480 And then it wasn't until I so I, let me tell you, I 185 00:16:52.639 --> 00:16:56.600 fought a wheelchair like I just spot it because I had only ever seen a 186 00:16:56.639 --> 00:17:02.440 manual chair, and I knew that my shoulders were weak. I had no 187 00:17:02.519 --> 00:17:07.640 idea how I would push a chair. I had no idea how would get 188 00:17:07.680 --> 00:17:12.319 out of a chair because I was having difficulties standing up from chairs. And 189 00:17:12.480 --> 00:17:17.240 no one ever said, hey, this isn't how this is going to go 190 00:17:17.359 --> 00:17:22.319 for you. No one, you know, at no time between two thousand 191 00:17:22.359 --> 00:17:26.640 and two and two thousand and seven did my neurologists and I ever have a 192 00:17:26.680 --> 00:17:34.279 conversation about what a wheelchair would look like in my future. And so I 193 00:17:34.440 --> 00:17:37.359 was just left to, you know, let my brain run them up, 194 00:17:37.480 --> 00:17:41.839 which is never a really good spot when you, you know, have a 195 00:17:41.880 --> 00:17:48.240 disease that no one can really pin point down for you. But so it's 196 00:17:48.480 --> 00:17:55.880 twenty twenty three. I'm fifty six years old now and I use a powerchair 197 00:17:55.920 --> 00:18:00.359 full time. And I've only ever had a powerchair because everyone was like, 198 00:18:00.440 --> 00:18:04.279 yeah, girl, you're never going to push yourself. Really, you know, 199 00:18:04.519 --> 00:18:10.519 I can. I can. I have a manual chair for travel sometimes 200 00:18:10.839 --> 00:18:14.640 and I can push my way across the pile floor probably fifty yards and I'm 201 00:18:14.680 --> 00:18:19.519 toast. I can done. And it has to be flat, you know, 202 00:18:19.599 --> 00:18:22.200 So you ever put if you ever put me at a curb cut with 203 00:18:22.240 --> 00:18:26.440 my manual chair, I'd be out into traffic without being able to stop myself. 204 00:18:26.799 --> 00:18:30.880 But here's the thing. You you have a life where you are functioning 205 00:18:30.960 --> 00:18:33.920 amazingly. I have to say, you know, I got so the whole 206 00:18:33.920 --> 00:18:42.599 wheelchair thing and the involved process in getting a wheelchair outffitted for you was for 207 00:18:42.720 --> 00:18:49.640 driving, for flying, for everything, was so I couldn't believe how what 208 00:18:49.759 --> 00:18:52.880 an industry, the wheelchair industry is. I mean, I couldn't believe how 209 00:18:52.920 --> 00:19:00.319 complicated it is. It is so complicated. And at this point, I 210 00:19:00.359 --> 00:19:07.279 have a great, big monster of a power chair and I just kind of, 211 00:19:07.839 --> 00:19:11.240 you know, make a joke about the fact that it is an entire 212 00:19:11.279 --> 00:19:15.279 foot longer than where my backside sits. So I just kind of, I 213 00:19:15.359 --> 00:19:21.839 just kind of joke about my wheelchair big booty when when I'm in restaurants and 214 00:19:21.839 --> 00:19:23.480 stuff, because I want to make sure that people don't kick the back of 215 00:19:23.480 --> 00:19:27.680 my chair. So I want to ask you. I want to ask you 216 00:19:27.720 --> 00:19:37.599 about that. So sure people who do not have wheelchairs don't understand what people 217 00:19:37.640 --> 00:19:45.799 who have wheelchairs need and can appear very insensitive. Yes, And I want 218 00:19:45.839 --> 00:19:48.759 you to talk to us because I remember when I hit breast cancer some of 219 00:19:48.799 --> 00:19:52.839 the stupidest things people say to me, So talk to us about so that 220 00:19:52.880 --> 00:19:57.839 people can be more aware and sensitive. What are some of the really ridiculous 221 00:19:57.839 --> 00:20:03.039 things and challenges and how can people be better? It's kind of a two, 222 00:20:03.079 --> 00:20:06.799 two or three part question, but you know where I'm going with it, 223 00:20:07.880 --> 00:20:10.640 yep. And let me let me back up and finish the other answer, 224 00:20:10.640 --> 00:20:14.400 which is that my power wheelchair. I'm either on my power wheelchair or 225 00:20:14.440 --> 00:20:18.200 I'm in bed, like that's my day. Wow, So there's no in 226 00:20:18.319 --> 00:20:22.079 between for me. Do you have someone helping you, a caregiver? I 227 00:20:22.119 --> 00:20:26.119 have? I have a caregiver who comes in three days a week to help 228 00:20:26.200 --> 00:20:30.480 do laundry and clean the house and help me shower, but otherwise I live 229 00:20:30.519 --> 00:20:38.559 alone. Wow. Yeah, good for you killing it. Thanks, So 230 00:20:38.599 --> 00:20:45.319 the things that wanted so people, isn't that funny? Let me work. 231 00:20:45.640 --> 00:20:52.599 Let me frame up my words really carefully here. Sure, No, it's 232 00:20:52.720 --> 00:20:56.119 not. It's not that so much as I want to make sure that I'm 233 00:20:56.200 --> 00:21:00.720 really accurate in what I'm trying to convey. Is that I will say that 234 00:21:00.839 --> 00:21:06.240 I have a disability, but not that I am disabled. Good point. 235 00:21:07.400 --> 00:21:14.440 So that's my that's me. Those are my choices. I follow follow Matthew 236 00:21:15.000 --> 00:21:19.720 Sanford's language of I sit on my wheelchair and not in my wheelchair. Good 237 00:21:19.759 --> 00:21:23.799 point, because you sit on a kitchen chair, not in a kitchen chair, 238 00:21:25.240 --> 00:21:29.119 right, right. And it's not to say that my wheelchair is a 239 00:21:29.200 --> 00:21:34.680 kitchen chair, but it's to help convey the message that I'm not wheelchair bound. 240 00:21:36.799 --> 00:21:41.640 I'm not confined to my wheelchair. My wheelchair is actually the thing that 241 00:21:41.720 --> 00:21:45.440 lets me roam the neighborhood, right, It's the thing that lets me go 242 00:21:45.559 --> 00:21:48.759 to wherever it is that I want to go. I mean, we just 243 00:21:49.680 --> 00:21:53.279 flew my backup chair and went to Europe for twelve days. My fiance took 244 00:21:53.279 --> 00:21:57.720 me to Europe. Wow, and we took that monster powerchair all over you 245 00:21:57.759 --> 00:22:03.599 know, in Madrid, in Barcelona and Paris. In the States, the 246 00:22:03.680 --> 00:22:12.720 big challenge is just plain access. And you know, there are still restaurants 247 00:22:14.359 --> 00:22:21.799 that don't have accessible bathrooms. I know, and there are still I've still 248 00:22:21.880 --> 00:22:26.160 been taken through kitchens. They're like, oh, yeah, the ramp was 249 00:22:26.200 --> 00:22:30.200 in the back and you have to go through the kitchens to get there to 250 00:22:30.279 --> 00:22:33.000 get to the dining room. Well, that isn't isn't awesome? It doesn't 251 00:22:33.000 --> 00:22:40.279 make me feel welcomed. It doesn't feel like you actually value my business. 252 00:22:41.519 --> 00:22:45.400 The you'll call I'll call places and say, you know, hey, are 253 00:22:45.400 --> 00:22:48.680 you wheelchair cosable and they're like sure, yeah, we only have one step 254 00:22:51.160 --> 00:22:56.920 wow, okay, well, and the the number of times that I've heard, 255 00:22:57.400 --> 00:23:03.400 oh well we were grandfather into the ada. Okay, we're thirty three 256 00:23:03.480 --> 00:23:08.440 years later and you've made no changes to your building ever. Or you can't 257 00:23:08.599 --> 00:23:15.200 spend sixty dollars and buy a ramp, even a portable ramp. I mean 258 00:23:15.279 --> 00:23:22.319 I went into the most seemingly unaccessible places in Paris because my fiance would go 259 00:23:22.400 --> 00:23:26.039 ring the doorbell, that's us, and someone would bring out a ramp. 260 00:23:26.240 --> 00:23:34.359 You're allowed to have a portable ramp for access. It is permissible, you 261 00:23:34.400 --> 00:23:41.799 know. The and people are making poor design choices. I was. I 262 00:23:41.839 --> 00:23:48.319 was in a restaurant in Dallas in the Arts District, and when you opened 263 00:23:48.400 --> 00:23:52.160 the bathroom door, there was a short wall I had, so you'd have 264 00:23:52.200 --> 00:23:55.720 to go in and make a hard write ninety degree turns. Are you with 265 00:23:55.799 --> 00:23:59.839 me? Yeah? I can? I am yeah, I got the visual 266 00:23:59.880 --> 00:24:03.599 on okay, And so you'd get past the door, you'd make that hard, 267 00:24:03.680 --> 00:24:07.559 right ninety The first thing that he came to were the sinks, and 268 00:24:07.599 --> 00:24:11.680 then you'd make a less to go back to the toilet salls. Well, 269 00:24:11.920 --> 00:24:19.079 the door was actually set into the hallway wall at an angle, and so 270 00:24:19.480 --> 00:24:22.240 when the door opened all the way up, it in whack. Who was 271 00:24:22.279 --> 00:24:29.960 ever standing at the sink? Oh god? So to fix this they put 272 00:24:30.240 --> 00:24:33.359 a door stopper in the floor, which reduced the swing of the door. 273 00:24:37.039 --> 00:24:40.359 And when they did that, they made it so now I couldn't get my 274 00:24:40.400 --> 00:24:47.240 power chair through. Oh god. And I had my fiance when we travel, 275 00:24:48.480 --> 00:24:52.200 we go look at bathrooms because that's my that's my main pain point in 276 00:24:52.279 --> 00:24:59.039 life are bathrooms. Yeah, yeah, I mean I know I had friend, 277 00:24:59.079 --> 00:25:00.400 I had a friend who you know, broke her foot and had to 278 00:25:00.440 --> 00:25:03.880 crawl down the steps on her on her butt to go to the bathroom in 279 00:25:03.880 --> 00:25:11.799 a restaurant. Yeah. In in Madrid and in Barcelona and in Paris, 280 00:25:11.799 --> 00:25:15.240 a lot of the bathrooms in places were downstairs, right, and there were 281 00:25:15.240 --> 00:25:22.839 no elevators, you know, So there are some just some bad design choices 282 00:25:22.920 --> 00:25:29.440 being made. And in you know, overseas, that's different, you know, 283 00:25:29.480 --> 00:25:33.480 in Europe it's different. But here in the States, like I shouldn't 284 00:25:33.559 --> 00:25:37.440 have to call to find out you know, what the setup is going to 285 00:25:37.480 --> 00:25:41.240 be like. But in that restaurant in Dallas, I had my fiancee go 286 00:25:41.319 --> 00:25:42.559 in all the way into the bathroom. He's like, this is the biggest 287 00:25:42.559 --> 00:25:48.240 successful sol I've ever seen. It's gorgeous. And you need a swan team. 288 00:25:48.359 --> 00:25:55.000 You need a swant team to an advanced team to check out restaurants other 289 00:25:55.039 --> 00:25:57.759 than restaurants, which I was. I'm fully aware of because I ran the 290 00:25:57.839 --> 00:26:03.440 James Spear Foundation Awards, which included restaurant design awards for many, many years, 291 00:26:03.519 --> 00:26:08.359 and one of the jurors uh was a designer who was disabled. She 292 00:26:08.359 --> 00:26:14.400 had a wheelchair, and she basically said, we will eliminate all restaurants that 293 00:26:14.480 --> 00:26:21.559 do not have a DA considerations, you know, And and that's what opened 294 00:26:21.599 --> 00:26:22.960 my eyes up to it. Plus my friend Yanik, who is in a 295 00:26:22.960 --> 00:26:26.680 wheelchair and running a restaurant, and you know, I'm like, oh my 296 00:26:26.759 --> 00:26:32.799 god, it's like crazy. What about other things? Hotels? Yeah, 297 00:26:33.720 --> 00:26:41.279 hotels, meetings. I was out in Miami and at a meeting where you 298 00:26:41.359 --> 00:26:45.680 broke out into little groups and then they would choose the It was a speaking 299 00:26:45.079 --> 00:26:49.079 It was a thing for public speakers, and they you broke out into little 300 00:26:49.079 --> 00:26:52.519 groups and then they would nominate who was the best, had the best story, 301 00:26:52.640 --> 00:26:56.000 or the best little elevator pitch out of that group so that you could 302 00:26:56.039 --> 00:27:00.599 get up on stage. And then they sent like the eight of these two 303 00:27:00.680 --> 00:27:04.640 hundred and fifty people up on stage. And I pulled the event planner aside 304 00:27:04.680 --> 00:27:10.359 later and I said, where was the ramp? And she said what do 305 00:27:10.440 --> 00:27:15.119 you mean? And I said, if I had been chosen as one of 306 00:27:15.160 --> 00:27:18.880 the eight, where would I in the current setup? Where would I have 307 00:27:18.000 --> 00:27:22.759 had to do my speech from? And she said, oh, on the 308 00:27:22.839 --> 00:27:26.880 floor in front of the stage. I said, right, And how does 309 00:27:26.920 --> 00:27:33.960 that make me look to the everyone else participating? And she said smaller? 310 00:27:36.000 --> 00:27:42.680 I said right? Small? Yeah, literally literally not as tall as everyone 311 00:27:42.720 --> 00:27:49.319 because they're all standing up three feet above me. You so we've created this 312 00:27:49.519 --> 00:27:53.799 visual that I'm small and i'm and because of that, you labeled me as 313 00:27:53.799 --> 00:28:03.440 insignificant And she looked like I'd slapped her face. Now, that wasn't meant 314 00:28:03.480 --> 00:28:07.519 to be harsh for her. It was simply like something that she needed to 315 00:28:07.559 --> 00:28:17.599 consider. And hotel rooms are my other pain point in life. The things 316 00:28:17.599 --> 00:28:22.200 that people consider to be a da the fact that it's still next to impossible 317 00:28:22.200 --> 00:28:27.880 to book an actual accessible room online, which has been the loss since twenty 318 00:28:27.960 --> 00:28:37.839 thirteen. That they're actually supposed to have floor plans for the bedroom bathroom areas 319 00:28:38.359 --> 00:28:44.440 so that I can choose, and the Venetian in Vegas did that. They 320 00:28:44.440 --> 00:28:48.759 actually put up a floor plan and it looks super fantastic, except that they 321 00:28:48.759 --> 00:28:55.319 put the toilet in a toilet room like a water closet, and in doing 322 00:28:55.359 --> 00:29:00.599 that they took away the transfer space, so now I can't actually get close 323 00:29:00.720 --> 00:29:07.359 enough to the toilet to use it. It's like, okay, you need 324 00:29:07.400 --> 00:29:15.559 to consult people who use wheelchairs to actually do this. And there are just 325 00:29:17.279 --> 00:29:22.759 inconsiderate choices. We were just at the Paris in Vegas, at the Paris 326 00:29:22.839 --> 00:29:26.559 Hotel in Las Vegas, I'm just going to call them out, and there 327 00:29:26.599 --> 00:29:33.640 were like twenty or twenty one desks at receptions, and twenty of them were 328 00:29:33.720 --> 00:29:40.559 forty eight inches high and one of them was thirty six inches time. And 329 00:29:41.000 --> 00:29:45.240 when we went to check in, rather than someone saying, oh yes, 330 00:29:45.400 --> 00:29:52.119 let's walk down here to the accessible desk, and no one offered us that 331 00:29:52.279 --> 00:29:56.640 consideration, and when we went down to look at it, it's now actually 332 00:29:56.640 --> 00:30:00.759 the enterprise rental car desk, so they've they put it there because it was 333 00:30:00.799 --> 00:30:07.720 required by the ADA, and then they refuse to use it properly. It 334 00:30:08.039 --> 00:30:17.759 makes me shake my head, and so I don't travel alone anymore for physical 335 00:30:17.799 --> 00:30:26.640 reasons, but also just those kinds of considerations where you know, I actually 336 00:30:26.640 --> 00:30:33.160 need someone who's able to go in and look at things and help with other 337 00:30:33.200 --> 00:30:37.480 stuff. So the you know, that's kind of and and I have a 338 00:30:37.519 --> 00:30:44.400 business called making Waves for Good, right which is and that's what we're that's 339 00:30:44.440 --> 00:30:48.279 what we're doing. And making ways for Good is I want to help businesses 340 00:30:48.440 --> 00:30:52.680 understand the codes. And that's really so valuable. I mean, here's a 341 00:30:52.680 --> 00:30:59.559 good thing. You're taking an inevitability is something you cannot control that's happening to 342 00:30:59.599 --> 00:31:04.119 you, and you're taking your rough waters and your experience to try to help 343 00:31:04.400 --> 00:31:10.079 smooth away for others and teaching people who really don't know. You know, 344 00:31:10.279 --> 00:31:15.000 until you enter this world, you don't understand it. You have to be 345 00:31:15.119 --> 00:31:18.839 tauned. You know, I've said for a long time, and you know, 346 00:31:18.880 --> 00:31:22.720 people don't know what they don't know and they don't know what they don't 347 00:31:22.759 --> 00:31:26.440 think about, and they don't think about what doesn't affect them. Right, 348 00:31:26.640 --> 00:31:30.480 But we all need to be sensitive because we're all on alike. So here's 349 00:31:30.480 --> 00:31:33.119 something interesting to me. I just want to make sure we get in that. 350 00:31:33.359 --> 00:31:40.119 You know, you also defy what people you know again, you you 351 00:31:40.119 --> 00:31:42.680 you know you you explain living with a disability versus disabled, and that's a 352 00:31:42.720 --> 00:31:48.960 big definition. You have done things that many many others have not, and 353 00:31:48.000 --> 00:31:52.359 I was in one of them. Thus, rough Waters is you became a 354 00:31:52.359 --> 00:31:59.920 para surfer, which you know. Why have I tried surfing about kill? 355 00:32:00.319 --> 00:32:02.279 I thought my back hurts so bad for day I couldn't do it. I 356 00:32:02.279 --> 00:32:05.799 couldn't. I can't even as a breast cancer. So if I ever lift 357 00:32:05.960 --> 00:32:08.960 a lot of stuff, why did you choose parasurfing of all things? I 358 00:32:08.960 --> 00:32:14.599 mean, I get the Miss Wheelchair Kentucky pageant, which was awesome. I 359 00:32:14.599 --> 00:32:17.279 happen to like pageants, but the surf parasurfing was a big That was a 360 00:32:17.279 --> 00:32:22.880 big one. So I actually found those at the same time. Uh huh. 361 00:32:22.000 --> 00:32:28.160 I had knew that I was going to be getting a wheelchair because that 362 00:32:28.319 --> 00:32:30.000 was kind of I knew that was coming in the future. So I went 363 00:32:30.079 --> 00:32:36.519 looking for things to do that I could do with a wheelchair, and I 364 00:32:36.559 --> 00:32:42.240 found on video clips where Miss Wheelchair California was going out surfing with this group, 365 00:32:43.319 --> 00:32:45.519 and then there was video of her laying down on a surfboard. So 366 00:32:45.559 --> 00:32:50.799 I will tell you that there is that difference in that I never stand up 367 00:32:50.799 --> 00:32:53.279 on my surfboard, so I never to I never have to pop up. 368 00:32:53.640 --> 00:32:57.720 You also have a team to help you too, because I was thinking, 369 00:32:58.039 --> 00:33:01.880 you know, if you've roll over, you can't swim. I can write 370 00:33:01.880 --> 00:33:06.960 myself okay, so I can kick and I can get my faith out of 371 00:33:07.000 --> 00:33:12.839 the water, but I cannot pull myself back up on a board. And 372 00:33:12.920 --> 00:33:20.480 so because my shoulders are weak, right, and the and so when I've 373 00:33:20.640 --> 00:33:24.599 competed, and that was in twenty eighteen, So the book kind of stopped 374 00:33:24.599 --> 00:33:30.319 in twenty seventeen. It took me six years from finishing the book to actually 375 00:33:30.359 --> 00:33:34.799 get it out into the real world. And that's part of a whole other 376 00:33:34.920 --> 00:33:43.920 rough water story. But so the minimum number of people that I have in 377 00:33:43.960 --> 00:33:46.559 the water is two. So I have someone who will push me onto a 378 00:33:46.599 --> 00:33:52.240 wave and someone who will catch me on the other end of it, and 379 00:33:52.440 --> 00:33:57.720 in Hawaii that can be a really really long way. But the number of 380 00:33:57.720 --> 00:34:00.640 people that takes to get me on my surf for when I fall off and 381 00:34:00.680 --> 00:34:07.079 not that's not if because every server falls off the Bethanie Hamilton just put up 382 00:34:07.079 --> 00:34:13.480 this amazing video of her wiping out fantastically during your competition. So everybody gets 383 00:34:13.480 --> 00:34:16.199 falls off and everybody gets back on a board. It takes five or six 384 00:34:16.239 --> 00:34:22.000 people to flip me back onto a board, people to hold me steady, 385 00:34:22.559 --> 00:34:30.480 people to hold the board steady. The most interesting flip happens is they'll line 386 00:34:30.519 --> 00:34:35.199 me up parallel to the board with my face to the sky and then someone 387 00:34:35.280 --> 00:34:37.960 will literally be under me and flip log roll me onto the back up on 388 00:34:38.199 --> 00:34:45.159 the board. So you have to trust, like really super super trust the 389 00:34:45.199 --> 00:34:50.800 people that you're with because they're in charge of your safety and your physicality. 390 00:34:51.239 --> 00:34:53.679 Yeah, you're safety completely. And it's a team. I mean your life 391 00:34:53.719 --> 00:35:00.760 involve a team. Yeah, contest you enter, I mean you went to 392 00:35:00.800 --> 00:35:02.440 Hawaii. I'm reading this book in Hawaii and you're I'm reading it. How 393 00:35:02.440 --> 00:35:07.519 you actually entered this huge competition in Hawaii. I mean you've been you've been 394 00:35:07.559 --> 00:35:10.199 doing this parasurfing in New Jersey, right, and then you get on a 395 00:35:10.199 --> 00:35:15.800 plane, which is a whole nother story. The plane right, traveling by 396 00:35:15.840 --> 00:35:22.239 playing with the wheelchair and getting Hawaii. How did that go? Not like 397 00:35:22.280 --> 00:35:29.199 I thought it was gonna in so many ways. I ended up traveling with 398 00:35:29.199 --> 00:35:32.119 a manual care of that trip, which meant that I was my independence was 399 00:35:32.159 --> 00:35:40.320 really limited, and so uh that was the the personal care team that I 400 00:35:40.360 --> 00:35:45.159 traveled with. I didn't know those people very well, and I made a 401 00:35:45.199 --> 00:35:49.159 decision not to ever do that again, to not travel with people that I 402 00:35:49.199 --> 00:35:54.679 know really, really well. And I wasn't nearly as strong enough as I 403 00:35:54.760 --> 00:36:02.320 thought I was. I wasn't in in prime surfing condition. I mean, 404 00:36:04.239 --> 00:36:09.800 I was significantly heavier than I should have been, and which means that and 405 00:36:09.880 --> 00:36:15.119 that extra weight limits my own mobility because it makes it harder even for me 406 00:36:15.199 --> 00:36:25.599 to transfer myself and move around. And so it became a point where it 407 00:36:25.719 --> 00:36:30.559 was decided for my safety and for the safety of everybody else that because I 408 00:36:30.599 --> 00:36:35.559 couldn't get on a board by myself and it was going to take a lot 409 00:36:35.800 --> 00:36:38.360 a lot of time. I ended up being in a different part of the 410 00:36:38.400 --> 00:36:44.360 competition than I expected to be. I still caught some really great waves. 411 00:36:44.360 --> 00:36:51.280 I'm trying not to completely you know, spoiler alert that one. But the 412 00:36:51.360 --> 00:36:54.760 point is, Oh, you took the leap, and you did that with 413 00:36:55.000 --> 00:36:59.199 the miss Wheelchair Kentucky. I mean you did the whole pageant thing, which 414 00:36:59.239 --> 00:37:02.920 is a lot of pressure and photography. You know, what is it you 415 00:37:04.000 --> 00:37:10.000 haven't done that you'd like to do? Jump out of an airplane? Seriously, 416 00:37:10.559 --> 00:37:17.280 there are places that will that specialize in helping people with disabilities jump out 417 00:37:17.320 --> 00:37:22.320 of airplanes. So I'm really excited to do that. I want to go 418 00:37:23.039 --> 00:37:28.920 back to I want to go back to London. I want to go to 419 00:37:29.000 --> 00:37:31.280 Budapeste and see my photos in a gallery be hung up at a gallery in 420 00:37:31.320 --> 00:37:36.280 Budapesche. I had some photos up there before, so I'm crossing that figures 421 00:37:36.280 --> 00:37:38.199 we can make that work out. What is your medium with your photography, 422 00:37:38.440 --> 00:37:46.719 Heather? Some digital. I'm using a micro four thirds camera that has interchangeable 423 00:37:46.800 --> 00:37:52.360 lenses, and I chose that because of the weight. I'm really sensitive to 424 00:37:52.480 --> 00:37:58.280 how much things weigh. It has a tilting, rotating screen, so I 425 00:37:58.280 --> 00:38:02.320 actually shoot everything out of my lap, which then by default gives me a 426 00:38:02.400 --> 00:38:07.480 much different angle than you if we were standing side by side. If we're 427 00:38:07.519 --> 00:38:12.199 side by side and you're holding a camera to your faith, my camera is 428 00:38:12.199 --> 00:38:19.800 probably two feet lower than yours. I was out doing some nature photography and 429 00:38:19.880 --> 00:38:23.800 saw another photographer who had a thirty five millimeter and a great big zoom lens, 430 00:38:24.440 --> 00:38:29.360 and they were doing these big tracking shots, so they're following the bird 431 00:38:29.400 --> 00:38:34.480 as it's flying. And that's hard for me as a power wheelchair yeah, 432 00:38:34.519 --> 00:38:36.719 to move and hold and hold my camera and do all that. So I 433 00:38:36.719 --> 00:38:39.800 don't tend to do those type of photos. But the photographer didn't say to 434 00:38:39.840 --> 00:38:45.039 me, oh, man, like, you get to hold your camera steady 435 00:38:45.039 --> 00:38:50.639 all the time, right, and it's and it's got a stable place to 436 00:38:50.679 --> 00:38:53.360 live all the time. It just sits on my leg. I do have 437 00:38:53.400 --> 00:39:00.760 a robotic arm attached to my wheelchair now, which allows me to take my 438 00:39:00.880 --> 00:39:05.519 camera up high level or even higher, and then there's an interface with my 439 00:39:05.639 --> 00:39:10.400 phone to activate the shutter. So I used to have a black and white 440 00:39:10.440 --> 00:39:14.800 dark room set up when I was in my twenties, and I loved it 441 00:39:15.440 --> 00:39:17.639 and I carried it around like it was, you know, a life reserver, 442 00:39:19.400 --> 00:39:21.760 you know one of those orange light bests that you have on coast guard 443 00:39:21.760 --> 00:39:25.239 boats. Like, that's how tightly I held onto my dark room. But 444 00:39:25.320 --> 00:39:32.400 now now I run strictly digital. It's just it's simpler. But I still 445 00:39:32.440 --> 00:39:37.519 have the ability to do all the same creative stuff with software. Wow, 446 00:39:38.800 --> 00:39:44.920 that's amazing. You know, jumping on airplane, really and you found love 447 00:39:45.599 --> 00:39:49.679 you you know, which is good, which is important because I know in 448 00:39:50.000 --> 00:39:55.719 the book it reveals some rocky relationships. You know that there were rocky relationships, 449 00:39:55.719 --> 00:40:01.280 and in the book, I fell in love and then I knew that 450 00:40:01.280 --> 00:40:08.239 that wasn't There were there were challenges there. Yeah, And I ended up 451 00:40:08.320 --> 00:40:16.440 choosing me instead of choosing us because he wasn't able to come to grips with 452 00:40:16.519 --> 00:40:22.760 my muscular districty. He was really struggling with that. Yeah. And I 453 00:40:22.840 --> 00:40:29.039 had chosen him thinking he was my last best shot. And when you believe 454 00:40:29.119 --> 00:40:32.320 that, lie, you'll settle for anything. Wow. And he was a 455 00:40:32.360 --> 00:40:37.519 great guy. In fact, we still talk, so you know, he 456 00:40:37.599 --> 00:40:40.960 just wasn't my guy. Does that make sense? Yeah? I mean, 457 00:40:42.039 --> 00:40:49.519 you know, some people can't deal. It's hard for them. And you 458 00:40:49.559 --> 00:40:52.760 know, if they can't do and and and they can't yeah, you got 459 00:40:52.800 --> 00:40:54.960 to choose. I think you said the most important thing you said, I 460 00:40:55.079 --> 00:41:00.239 chose me. I chose me, and so I when I went back to 461 00:41:00.320 --> 00:41:02.519 school and ended up with my first wheelchair, that's when I chose me. 462 00:41:06.199 --> 00:41:14.400 It turns out that this January, my first love high school boyfriend, resurfaced 463 00:41:15.960 --> 00:41:20.400 and he had been a widower for three years when he reached out to me 464 00:41:20.960 --> 00:41:24.519 through my photography website of all places, and we started dating. We got 465 00:41:24.559 --> 00:41:31.440 engaged in May, and congratulations, that's so wonderful. It's really sweet. 466 00:41:31.519 --> 00:41:37.760 And we're going to write our story because it's complicated. Yeah, you know, 467 00:41:37.840 --> 00:41:44.639 it's more complicated than thirty five years of not talking. Speaking of story, 468 00:41:45.079 --> 00:41:49.000 when did you start writing rough Orders And what was the was it cathartic 469 00:41:49.039 --> 00:41:53.079 for you, what was you know, the process for you emotionally? So 470 00:41:53.239 --> 00:41:59.159 I started writing rough Waters in twenty sixteen, and it was actually a completely 471 00:41:59.159 --> 00:42:04.079 different book in its first dress. In its first run, it was a 472 00:42:04.119 --> 00:42:10.039 book of stories, not a book of the story of me, if that 473 00:42:10.760 --> 00:42:16.880 makes sense. So I told funny stories about my cat bringing in a mouth 474 00:42:16.960 --> 00:42:21.039 and my service dog playing with it and you know, me trying to get 475 00:42:21.039 --> 00:42:27.360 it back out of a house, but not deep stories, and it said 476 00:42:27.440 --> 00:42:30.880 was another editor for a really long time. And then when I got it 477 00:42:30.960 --> 00:42:35.880 to the groups that I started working with last year, they were like, 478 00:42:35.920 --> 00:42:38.719 Okay, there's some stuff here, but it's boy, this is rough and 479 00:42:38.760 --> 00:42:43.920 it needs work. And so we got me in touch with a developmental editor 480 00:42:43.920 --> 00:42:46.199 who said, you know, where's the interiority here? And I said, 481 00:42:46.199 --> 00:42:49.559 I don't, you know, I don't even know what that word means. 482 00:42:49.719 --> 00:42:54.920 So let's start again. She said, what were you thinking here? What 483 00:42:54.960 --> 00:43:00.159 were you feeling here? Right? You know, I'm like, I to 484 00:43:00.199 --> 00:43:02.440 tell those stories and she said, uh, to make this a book that 485 00:43:02.559 --> 00:43:07.119 people are going to connect with. Yeah, you've got to do that. 486 00:43:07.440 --> 00:43:16.039 And so it was cathartic and painful and about the same time. And right 487 00:43:16.079 --> 00:43:22.519 before I turned my book over to this new group, I was working with 488 00:43:22.360 --> 00:43:28.000 a business coach and she said, you know, don't I don't need the 489 00:43:28.039 --> 00:43:30.960 details, but if you had traumatic you know, at least one traumatic event 490 00:43:31.880 --> 00:43:39.119 happened where you decided then that hiding who you are was safest. And I 491 00:43:39.159 --> 00:43:42.920 said, uh, yeah, this and this and this and this and this, 492 00:43:43.840 --> 00:43:47.199 and she said, then I can I suggest that you go get trauma 493 00:43:47.280 --> 00:43:52.960 therapy before we start working really deep, dig in deep on this business thing, 494 00:43:53.079 --> 00:43:58.960 because I think you really need to be seen, and when you let 495 00:43:58.960 --> 00:44:05.199 yourself be seen, it's going to be a beautiful thing. And so I 496 00:44:05.199 --> 00:44:12.039 took a deep breath and I found a counselor who specializes in I E M 497 00:44:12.159 --> 00:44:21.079 D R. It's yeah, yeah, it's trauma. It's eye movement E 498 00:44:21.239 --> 00:44:27.679 M R D. I don't know, so it's bimodal. So you I 499 00:44:27.800 --> 00:44:30.320 was tapping on my legs alternately, and you it's this whole big thing. 500 00:44:30.320 --> 00:44:35.800 It's trauma therapy. They use it for PTSD, even out in the military. 501 00:44:37.039 --> 00:44:38.599 And so I was doing trauma therapy at the same time that I was 502 00:44:38.639 --> 00:44:45.679 rewriting my book. Let me tell you that I would only recommend you do 503 00:44:45.760 --> 00:44:52.000 one or the other, not both at the same time. Trauma therapy would 504 00:44:52.079 --> 00:44:53.119 send me, you know, I would finish my session and I would go 505 00:44:53.199 --> 00:44:58.000 lay in bed and cry for an hour, like tough, really tough stuff, 506 00:44:59.079 --> 00:45:05.320 and then trying to you delved into all of the you know, how 507 00:45:05.360 --> 00:45:08.119 did it feel? Because I'm also a breast cancer survivor, I know, 508 00:45:08.480 --> 00:45:13.800 you know, how did it feel to have them effected me? And you 509 00:45:13.840 --> 00:45:21.679 know, I felt named. Yeah, I felt like a monster. I 510 00:45:21.719 --> 00:45:29.079 didn't want to leave the house. Yeah, you know. And then I 511 00:45:29.119 --> 00:45:35.199 actually knew though that I needed to get back to my fan family. So 512 00:45:35.360 --> 00:45:37.760 and actually going into that surgery, I told my doctor, look, dude, 513 00:45:37.760 --> 00:45:42.719 I have a date with a surfboard in seven weeks, and you have 514 00:45:42.760 --> 00:45:45.960 to help me make that happen because I knew that the water was my healing 515 00:45:46.000 --> 00:45:50.559 place. I have to tell you, Heather, your breast cancer diagnosis struck 516 00:45:50.639 --> 00:45:52.880 a nerve with me because you had something called the Filoades tumor, which I 517 00:45:52.920 --> 00:45:58.039 happened to know about because my best friend had a Flodi's tumor. Unfortunately, 518 00:45:58.119 --> 00:46:02.159 she was not as lucky as you were, and she passed because her cancer 519 00:46:02.280 --> 00:46:06.679 was discovered in an advanced stage because she didn't go get she did. She 520 00:46:06.719 --> 00:46:13.239 ignored it and Filodi's tumors. You're very lucky. You're very You're a very 521 00:46:13.280 --> 00:46:17.360 lucky woman, and I hope that you know, you continue to stay healthy 522 00:46:17.400 --> 00:46:21.159 in that area. It was just a lot. You know, I'm reading 523 00:46:21.159 --> 00:46:22.280 this book and there were a lot of reveals in the book which we don't 524 00:46:22.320 --> 00:46:27.079 forget into. But I'm like, and now she's got breast cancer. It 525 00:46:27.280 --> 00:46:30.719 was tough. And then when I read Felodi's timmer, I'm like, oh, 526 00:46:30.880 --> 00:46:36.079 yeah, that's that's that's rare, dude, that's rare. Rare. 527 00:46:36.360 --> 00:46:38.559 You deal, You're dealing with a lot of rare things. You were picked 528 00:46:38.599 --> 00:46:45.559 to be super special. I guess you know that, you know. I 529 00:46:45.400 --> 00:46:49.960 I make the self deprecating joke. You know, Mama always said I was 530 00:46:50.000 --> 00:46:54.000 special. Yeah, you know, but yeah, nobody needs the kind of 531 00:46:54.039 --> 00:46:59.400 special that I've gotten to be. Yeah, And I will tell you that 532 00:46:59.480 --> 00:47:04.239 the doctors when I run this, run this rare one more, one more 533 00:47:04.280 --> 00:47:07.400 point down the rail, and the doctors have said to me, oh, 534 00:47:07.440 --> 00:47:13.960 by the way, we think that the mustard just me that you have might 535 00:47:14.000 --> 00:47:16.880 be secondary to something we don't know how to find. But we don't think 536 00:47:16.960 --> 00:47:21.199 this is actually the primary cause of your issues. We think it might be 537 00:47:21.280 --> 00:47:23.519 secondary. And I have to tell you that I just kind of broke into 538 00:47:23.519 --> 00:47:30.519 one of those hysterical laughs. It's like, really, this thing that's wiping 539 00:47:30.559 --> 00:47:34.480 out my hips and my shoulders and my hands and my feet and and is 540 00:47:35.119 --> 00:47:39.840 you know that might not be my big thing? Wow? Wow. So 541 00:47:39.880 --> 00:47:43.800 here's what I want to ask you because we're going to have to wrap Heather, 542 00:47:44.360 --> 00:47:46.840 knowing all of this and you've you've lived an astoundingly amazing life. You've 543 00:47:46.840 --> 00:47:52.639 achieved more than many people who you know have the use of their legs and 544 00:47:52.800 --> 00:47:57.840 arms and their full bodies. So congratulations on that. Well, do you 545 00:47:57.880 --> 00:48:01.840 have a mantra or a quote that you live by that motivates you every day? 546 00:48:04.920 --> 00:48:08.599 You know? I have a couple. M One is find your team. 547 00:48:09.880 --> 00:48:15.880 Yeah right, you know, life is a team sport and people are 548 00:48:15.920 --> 00:48:19.519 going to come and go from your team, but the really good ones stay 549 00:48:19.599 --> 00:48:23.360 and they're the ones who will snatch you up and roll you over so that 550 00:48:23.400 --> 00:48:27.039 your faith up to you know that your face is out of the water. 551 00:48:27.079 --> 00:48:30.480 I'm going to use surfing metaphors. Yeah, they keep you afloat. They 552 00:48:30.559 --> 00:48:34.519 keep you afloat, and they keep your head you know, you keep your 553 00:48:34.519 --> 00:48:37.920 head above water basically. Yeah, they help you do that when you know, 554 00:48:38.000 --> 00:48:45.599 when you're really really struggling. And the other thing that I'm really working 555 00:48:45.639 --> 00:48:51.960 on and my monitor is self care is good. Yeah that's mine too, 556 00:48:52.000 --> 00:48:55.920 because I neglected my self care. Well, Heather, we've got to we've 557 00:48:55.960 --> 00:48:59.800 got to wrap up. It's just been a great conversation. I could talk 558 00:48:59.840 --> 00:49:05.480 to you forever. I want to just make sure that my listeners know again 559 00:49:05.800 --> 00:49:12.599 that your name is Heather C. Markham and your your company is making Ways 560 00:49:12.599 --> 00:49:16.000 for Good. The book is Rough Waters from Surviving to Thriving with Progressive Muscular 561 00:49:16.079 --> 00:49:23.280 Dystrophee and your website is Heatherseemarkham dot com. Correct, Yes, all right, 562 00:49:23.519 --> 00:49:30.800 listen. I wish you smooth waters ahead in your life and love, 563 00:49:31.239 --> 00:49:37.480 and thank you for sharing your inspiring story. I hope it will help inspire 564 00:49:37.559 --> 00:49:43.800 others, particularly those who are receiving diagnoses that are knocking them off their feet. 565 00:49:44.079 --> 00:49:46.159 You know it's a choice you make every day. That's yeah, I 566 00:49:46.239 --> 00:49:52.199 make that choice, Dan Tall, no matter where you sit. Thank you 567 00:49:52.320 --> 00:49:55.199 very much for joining me and you've been listening to Fearless Fabulous. You I'm 568 00:49:55.239 --> 00:50:01.320 Melanie Young. You know that life will develop lots of detours, but you 569 00:50:01.360 --> 00:50:06.920 know you have the ability to navigate them if you choose. And life is 570 00:50:06.960 --> 00:50:10.639 about making choices to take care of yourself and live on your terms. So 571 00:50:10.760 --> 00:50:15.000 stay well, stay fearless and fabulous, and please follow me at Melanie Fabulous 572 00:50:15.039 --> 00:50:35.119 on Instagram. Thank you