WEBVTT - Case #07: Kam 0:00:03.560 --> 0:00:06.200 As this limp was developing and you're in high school. 0:00:06.920 --> 0:00:09.520 Never in your thoughts are you thinking I must have 0:00:09.600 --> 0:00:12.959 a disease or disability I didn't know about. I know 0:00:13.080 --> 0:00:15.160 there's going to be a lot of struggle and things 0:00:15.200 --> 0:00:18.000 are going to get worse. But you have to be resistant. 0:00:18.000 --> 0:00:19.479 You have to be willing to fight, you have to 0:00:19.480 --> 0:00:22.639 be willing to push past your means in order to 0:00:23.600 --> 0:00:27.840 live a quote unquote normal life. There's no magic pill 0:00:27.880 --> 0:00:31.680 that you can take. You know, that's terrifying. It was 0:00:31.760 --> 0:00:34.400 kind of really dark time. It was just like, well, 0:00:35.240 --> 0:00:37.360 what do I do? What is you know, what's happening? 0:00:37.840 --> 0:00:49.680 You're feeling like your life is over? How terrifying would 0:00:49.720 --> 0:00:53.040 it be to fight an unknown enemy, one you didn't 0:00:53.080 --> 0:00:57.280 recognize and didn't see coming. What if that enemy was 0:00:57.360 --> 0:01:03.520 coming from within a disease even doctors couldn't identify. Nearly 0:01:03.680 --> 0:01:07.720 half of all Americans suffer from some chronic illness, and 0:01:07.800 --> 0:01:16.640 many struggle for an accurate diagnosis. These are their stories. A. 0:01:16.800 --> 0:01:34.160 Lauren Bright the checko and this is symptomatic. When you 0:01:34.200 --> 0:01:37.880 meet cam Redloss, you immediately notice her pink hare and 0:01:37.959 --> 0:01:40.400 then as you talk to her, you quickly notice that 0:01:40.440 --> 0:01:44.000 she has a fiery and creative energy to match. So 0:01:44.040 --> 0:01:47.120 I'm actually a self taught illustrator and all of my 0:01:47.200 --> 0:01:52.200 drawings are related to moments inspired by my rare debilitating 0:01:52.200 --> 0:01:54.559 condition that it just kind of took on a life 0:01:54.560 --> 0:01:57.760 of its own. Cam has gained a following for her 0:01:57.800 --> 0:02:02.400 emotionally evocative illustrations, which reflect her long, arduous journey to 0:02:02.440 --> 0:02:05.320 find a diagnosis and learn how to live with an 0:02:05.320 --> 0:02:08.560 elusive disease that has altered the course of her life. 0:02:09.280 --> 0:02:11.320 One of the things that she's really good at, and 0:02:11.320 --> 0:02:12.920 I don't even know if she does it purposely, is 0:02:12.960 --> 0:02:16.639 the fact that she's so open and vulnerable about herself. 0:02:17.080 --> 0:02:20.080 You know, most people shy away from wanting to be 0:02:20.160 --> 0:02:23.680 too honest or show their insecurities or even faults, and 0:02:23.760 --> 0:02:25.560 Cams like, you know what, you know, I can't really 0:02:26.160 --> 0:02:30.280 avoid people seeing my insecurities a certain extent, and so 0:02:30.320 --> 0:02:32.600 I might as well just be open about it and 0:02:33.160 --> 0:02:36.280 talk about it myself and let people into the conversation. 0:02:36.880 --> 0:02:39.720 That is her husband Jason, who first met Cam when 0:02:39.720 --> 0:02:43.120 they were in design school in Michigan. But Cam's symptomatic 0:02:43.160 --> 0:02:47.920 journey started long before then. So I'm a Korean American 0:02:47.960 --> 0:02:51.960 adoptee and I was abandoned at birth. I was born 0:02:52.080 --> 0:02:57.000 with a cleft palette. I also had a deadly livery 0:02:57.040 --> 0:03:02.080 disease and chicken pox. I had measles and this is 0:03:02.080 --> 0:03:05.480 all in the first four months without a mother or 0:03:05.600 --> 0:03:08.280 parents whatever. Um. I was told to abandoned me right 0:03:08.320 --> 0:03:10.959 at the maternity clinic and I spent four years in 0:03:11.000 --> 0:03:14.160 an orphanage until an American family and Michigan adopted me. 0:03:14.639 --> 0:03:17.360 I have three brothers. I always say they were homemade. 0:03:17.400 --> 0:03:21.000 I was imported. It was a very typical Midwest upbringing. 0:03:22.680 --> 0:03:25.600 Cam grew up in a pretty competitive soccer household, where 0:03:25.600 --> 0:03:29.040 her father once played and brothers were eager to follow 0:03:29.160 --> 0:03:32.680 in his cleats. Cam showed impressive talent on the field 0:03:32.680 --> 0:03:36.120 to moving easily to varsity level as a high school junior. 0:03:36.720 --> 0:03:38.880 Soccer is a huge part of my life. I played 0:03:38.920 --> 0:03:42.560 the thirteen years and then when I got divarsity soccer, 0:03:42.880 --> 0:03:45.960 I was just noticing I was running slower. I would 0:03:46.480 --> 0:03:50.400 kick and it was such a disconnect with my mind 0:03:50.560 --> 0:03:52.920 and my body and there would be such a delay 0:03:52.960 --> 0:03:55.400 and I'm like, what is going on here? I am 0:03:55.440 --> 0:03:57.720 on the virsity soccer team and I felt like I 0:03:57.720 --> 0:03:59.920 was just embarrassing. I'm like, what's going on? I can't 0:04:00.000 --> 0:04:03.480 I am not myself. What did you think was happening 0:04:03.520 --> 0:04:05.880 at the time, because you must have been gas lighting 0:04:05.960 --> 0:04:09.720 yourself to a certain degree. Well, I agreed with that 0:04:09.720 --> 0:04:12.480 that I thought, well, it's me. It's easy to be 0:04:12.560 --> 0:04:15.080 very self critical, and it was just another reason to 0:04:15.120 --> 0:04:16.960 be done on myself and it was just a lot 0:04:17.000 --> 0:04:19.839 of self loathing. It was a very difficult time because 0:04:19.839 --> 0:04:22.040 I thought it was my fault. So when I look 0:04:22.080 --> 0:04:26.840 back at that time, I just remember all these issues 0:04:27.040 --> 0:04:30.000 that I had that I didn't know was something, and 0:04:30.040 --> 0:04:34.120 instead I blamed myself. But this wasn't her fault. It 0:04:34.160 --> 0:04:36.760 wasn't something she could just work through with some extra 0:04:36.800 --> 0:04:40.599 practice session or drills. And little did sixteen year old 0:04:40.600 --> 0:04:43.520 cam No, these were the first symptoms of a disease 0:04:43.600 --> 0:04:46.360 that was about to rapidly change the course of her life. 0:04:48.839 --> 0:04:51.320 Like a year later, I just kept complaining about it. 0:04:51.480 --> 0:04:53.359 My room was done in the basement, and so running 0:04:53.400 --> 0:04:55.080 up and down the stairs is a very normal thing 0:04:55.120 --> 0:04:57.920 for me to do, and then suddenly it became really difficult. 0:04:57.920 --> 0:05:00.719 I just couldn't. I would try to run up the 0:05:00.720 --> 0:05:02.480 stairs and I was like tired by the time I 0:05:02.560 --> 0:05:05.320 got to the top, and I was like, well, that's strange. Also, 0:05:05.880 --> 0:05:08.920 a gate or a limp started developing. I was thinking, 0:05:09.000 --> 0:05:11.960 that's just weird. Am I so lazy or auto shape 0:05:12.040 --> 0:05:14.440 that I can't even get my ankle to move? So 0:05:14.520 --> 0:05:17.360 I did start telling my parents I think there's something wrong, 0:05:17.839 --> 0:05:21.280 something's going on, And there was still that hesitance of like, okay, 0:05:21.279 --> 0:05:23.880 I'm you just not trying hard enough. So we went 0:05:23.920 --> 0:05:27.320 to the family doctor and pretty much he said he 0:05:27.440 --> 0:05:29.600 thinks one leg is shorter than the other. So for 0:05:29.680 --> 0:05:34.400 about two years I wore she lift. Nothing was changing, 0:05:34.400 --> 0:05:37.560 it was just getting worse. And I would tell my parents, hey, 0:05:37.600 --> 0:05:41.440 this is not getting better, it's actually worse, and this 0:05:41.720 --> 0:05:44.760 she lift is kind of hurting. Um. The response will 0:05:44.800 --> 0:05:47.360 be it's because you're not wearing it. And as it 0:05:47.400 --> 0:05:50.120 got worse than it became obvious like there's something going 0:05:50.160 --> 0:05:54.200 on here. From delayed reaction time quickly turning into drop 0:05:54.279 --> 0:05:58.560 foot as Cam struggled to understand the events, the mysterious 0:05:58.600 --> 0:06:02.880 deterioration of her mobile city was only just beginning. That 0:06:03.040 --> 0:06:07.039 must have been such a painful period sixteen seventeen and 0:06:07.160 --> 0:06:11.880 eighteen where you're trying to draw attention to something you 0:06:11.920 --> 0:06:16.680 don't understand, and then you're blamed for the symptoms. Yes, 0:06:17.480 --> 0:06:21.000 that was very difficult, and honestly it's more difficult in hindsight. 0:06:21.240 --> 0:06:23.680 I think that's something that a lot of us could 0:06:23.680 --> 0:06:27.039 potentially do, maybe to our child if our mind isn't there. 0:06:27.720 --> 0:06:31.599 We don't want to ever go there and consider that 0:06:31.640 --> 0:06:33.719 it could be a health thing. But now that I 0:06:33.800 --> 0:06:36.000 know what was wrong, I do feel a little bit 0:06:36.040 --> 0:06:41.200 of sadness for the young teenage cam who kind of 0:06:41.200 --> 0:06:43.240 just had to go through it alone. You know, you're 0:06:43.240 --> 0:06:45.719 in high school and you just feel like, you know, 0:06:45.720 --> 0:06:48.760 all my senior friends are playing soccer and I'm the 0:06:48.839 --> 0:06:51.960 leader who didn't make the team. And again, never in 0:06:52.000 --> 0:06:55.080 your thoughts are you thinking I must have a disease 0:06:55.240 --> 0:06:59.200 or disability I didn't know about. But contrary to the challenges, 0:06:59.720 --> 0:07:02.559 Ken never let what was happening to her physically getting 0:07:02.600 --> 0:07:05.000 the way of her goals, a theme she'll carry through 0:07:05.000 --> 0:07:08.800 her entire journey. She pushed through her first misdiagnosis and 0:07:08.839 --> 0:07:12.560 set her sights on studying industrial design in college, and 0:07:12.640 --> 0:07:16.200 as her symptoms worsened, she pushed even harder for answers. 0:07:16.760 --> 0:07:20.440 So I started seeing specialists because I felt like there's 0:07:20.480 --> 0:07:23.760 something neurology related. And again I know nothing about medical 0:07:24.080 --> 0:07:28.000 but what I found throughout the entire process is, Wow, 0:07:28.080 --> 0:07:30.960 there's no one that is going to help me. They 0:07:30.960 --> 0:07:33.920 all just gaslight me or give me pills that aren't 0:07:33.960 --> 0:07:37.080 helping me and making it worse. I didn't anticipate such 0:07:37.160 --> 0:07:39.360 a long journey of trying to figure out what was 0:07:39.400 --> 0:07:43.040 happening to my body, and pretty much every specialist was 0:07:43.080 --> 0:07:45.800 the same. I would go, they would do some tests, 0:07:46.280 --> 0:07:49.440 and they were all about the same area of diagnosis 0:07:49.480 --> 0:07:52.120 around my disease, but it wasn't the diagnosis. So one 0:07:52.200 --> 0:07:57.520 was like limon girdle, muscludish defy, one was facio scapular moscutif. 0:07:58.120 --> 0:08:02.880 One was dematomissitis. While Cam was diligently searching for answers 0:08:03.160 --> 0:08:06.880 and also working through a grueling industrial design program, she 0:08:06.960 --> 0:08:09.800 met Jason, who was in the illustration program at the 0:08:09.840 --> 0:08:13.280 same school. I just saw her. I was like, Wow, 0:08:13.280 --> 0:08:16.560 who's that and she looks super cute. She jokes that 0:08:16.680 --> 0:08:20.200 I stalked her, but when I figured out that she 0:08:20.320 --> 0:08:22.440 was in the industrial design program, I would kind of 0:08:22.440 --> 0:08:24.160 make my way over to their every once in a 0:08:24.160 --> 0:08:26.000 while kind of check things out, just to see if 0:08:26.000 --> 0:08:29.280 she was around. They instantly became friends, but she made 0:08:29.280 --> 0:08:33.080 it clear they were just friends for now. So do 0:08:33.120 --> 0:08:36.440 you remember how she opened up to you? How did 0:08:36.600 --> 0:08:42.280 her health struggles come up in conversation? You know, we 0:08:42.400 --> 0:08:46.800 probably talked about it very casually and very lightly. I 0:08:46.840 --> 0:08:49.439 didn't want to just bring it up and be like, hey, like, 0:08:49.480 --> 0:08:52.160 why are you walking with a cane? She brought it 0:08:52.240 --> 0:08:54.800 up at some point where we're hanging out, and uh, 0:08:55.160 --> 0:08:57.520 she explained to me a little bit more about the 0:08:57.640 --> 0:09:02.280 story honestly than the prognosis, because she didn't actually know 0:09:02.600 --> 0:09:05.280 for sure what she had at that time. But you 0:09:05.360 --> 0:09:08.640 kind of explained that, yeah, she had been sticking answer 0:09:08.720 --> 0:09:11.720 for a long time now. Using leg braces and a 0:09:11.800 --> 0:09:14.680 cane on a daily basis, Cam was able to get around, 0:09:14.679 --> 0:09:16.880 but it seemed to become more difficult by the month. 0:09:17.320 --> 0:09:21.200 Feeling that pressure without a proper treatment, Cam felt more 0:09:21.320 --> 0:09:24.160 emboldened to move on to the next doctor to try 0:09:24.160 --> 0:09:28.040 a different approach to figuring out what was wrong. So 0:09:28.120 --> 0:09:31.760 I had about six different diagnoses. Two of the diagnosis 0:09:31.800 --> 0:09:34.360 I had early on limb girl on muscaro distro feat 0:09:34.960 --> 0:09:40.560 and polymositas. Those seem like just by based on the symptoms, 0:09:40.559 --> 0:09:43.439 that those could be it. But obviously after a while 0:09:44.720 --> 0:09:47.800 living in and taking the medication, it was just a 0:09:47.840 --> 0:09:50.960 feeling like, I don't think those are it. On top 0:09:51.000 --> 0:09:53.920 of the frustration and mental toll it was taking on 0:09:53.960 --> 0:09:57.160 her to constantly feel an answer was always eluding her. 0:09:57.600 --> 0:10:01.280 It was increasingly difficult for Cam to even get herself 0:10:01.320 --> 0:10:04.360 to these appointments on her own, but she was determined 0:10:04.400 --> 0:10:06.880 to find an answer because she held onto the hope 0:10:07.160 --> 0:10:11.120 that if she did, her mobility could be restored. So 0:10:11.280 --> 0:10:14.800 there was an urgency for you to get a diagnosis, 0:10:14.880 --> 0:10:18.520 because did you think that if you got the right 0:10:18.520 --> 0:10:23.960 diagnosis you could reset things, that there would be a cure. Well, yeah, 0:10:24.000 --> 0:10:27.800 any kind of treatment, and the answer is always better 0:10:27.840 --> 0:10:31.040 than the unknown, even if it's a terrible answer, at 0:10:31.080 --> 0:10:34.320 least as an answer, because then you don't feel crazy 0:10:34.440 --> 0:10:38.559 or you don't feel so alone. So it's really the 0:10:38.600 --> 0:10:41.760 answer that you're looking for. Not ever realizing it could 0:10:41.760 --> 0:10:44.640 be this significant and this life altering, I just thought, well, 0:10:44.679 --> 0:10:46.480 there's something, and they'll give me some medicine and I'll 0:10:46.480 --> 0:10:49.960 be fine. Desperate to find the potential treatment that could 0:10:49.960 --> 0:10:53.360 slow or even reverse the loss of her mobility. Cam 0:10:53.440 --> 0:10:56.680 hit an emotional wall when a neurologist took eight months 0:10:56.720 --> 0:10:59.840 to give her the results of a biopsy, despite her sir, 0:11:00.120 --> 0:11:03.719 though she sympathizes with her doctors. And so I'd have 0:11:03.800 --> 0:11:06.760 to drag my disabled body using a cane and leg 0:11:06.800 --> 0:11:11.040 braces into this hospital center and they would tell me, oh, 0:11:11.080 --> 0:11:12.720 we don't have your results yet, and this is eight 0:11:12.720 --> 0:11:16.080 months later, and then I would go back in again 0:11:16.240 --> 0:11:18.880 and they would say we don't have your results. And 0:11:18.920 --> 0:11:21.160 I was thinking, like, what is going on? And I 0:11:21.240 --> 0:11:23.120 just finally said, you know how difficult it is for 0:11:23.160 --> 0:11:25.360 me to come in here. Why wouldn't you guys tell 0:11:25.400 --> 0:11:27.880 me that you don't have them and make me come 0:11:27.880 --> 0:11:33.080 into an appointment the lead neurologist, he basically said, And 0:11:33.120 --> 0:11:35.400 I was getting cheery, and he knew my parents are 0:11:35.400 --> 0:11:37.600 going through divorce at the time, and you know, college 0:11:37.640 --> 0:11:41.000 is very difficult, and he basically said, oh, I'm sorry. 0:11:41.080 --> 0:11:43.320 Is it because your parents are getting a divorce? Do 0:11:43.320 --> 0:11:46.240 you need some medication for that? And I get it. 0:11:46.280 --> 0:11:49.199 I have sympathy for doctors. I get that they're getting 0:11:49.240 --> 0:11:52.080 a lot of non specialists coming and telling them what 0:11:52.120 --> 0:11:55.480 they think is wrong. But there is also something to 0:11:55.720 --> 0:11:58.600 that where the person does know their body the most 0:11:59.120 --> 0:12:01.600 and got the most and involved to try to solve it. 0:12:02.160 --> 0:12:06.320 Cam was on an emotional pendulum, swinging from determination to 0:12:06.440 --> 0:12:10.760 loneliness and back again. After five diagnoses that never seemed 0:12:10.760 --> 0:12:13.640 to fit and traveling all over Michigan trying to find 0:12:13.679 --> 0:12:17.000 an answer, Cam had an idea and a glimmer of 0:12:17.040 --> 0:12:19.640 hope to go to the best hospital in the country 0:12:19.679 --> 0:12:23.559 for rare diseases, the Mayo Clinic. It's so weird looking 0:12:23.600 --> 0:12:26.720 back on it, but when you're in it, all these 0:12:26.760 --> 0:12:30.320 things aren't adding up. It only adds up in hindsight. 0:12:36.440 --> 0:12:40.439 We'll be right back with Symptomatic, a Medical Mystery Podcast. 0:12:47.400 --> 0:12:55.360 Now back to Symptomatic, a Medical Mystery Podcast. Cam had 0:12:55.400 --> 0:12:57.760 been a rising soccer star in high school when some 0:12:57.880 --> 0:13:02.199 mysterious illness started targeting her legs, taking away her mobility 0:13:02.280 --> 0:13:06.400 piece by piece while juggling assignments in a grueling design program. 0:13:06.480 --> 0:13:09.280 As a very independent young adult, she went on a 0:13:09.280 --> 0:13:11.959 mission to try to find answers as to what had 0:13:12.000 --> 0:13:16.880 been ailing her. When you're in it, all these things 0:13:16.880 --> 0:13:20.640 aren't adding up. It only adds up in hindsight, But 0:13:21.080 --> 0:13:24.160 you know, at the time, you're just like, I don't know. 0:13:24.200 --> 0:13:26.760 I'm trying to finish college. I know there's some kind 0:13:26.760 --> 0:13:28.959 of disability or something going on here. So that was 0:13:29.080 --> 0:13:32.160 very important for me to finish college, and so I 0:13:32.200 --> 0:13:34.320 was very hyper focused on making sure I get my 0:13:34.400 --> 0:13:38.040 degree while I'm trying to figure out my diagnoses. But 0:13:38.120 --> 0:13:42.000 now she had a new possibility for hope of the diagnosis. 0:13:42.040 --> 0:13:44.040 She was traveling to the Mayo Clinic to see the 0:13:44.080 --> 0:13:47.880 best doctors in the country. So I flew there actually 0:13:47.880 --> 0:13:52.520 by myself. Um, which is really difficult looking back. How 0:13:52.559 --> 0:13:55.480 old are you at this point? I mean I was 0:13:55.520 --> 0:13:59.280 old enough. I was sobaly like twenty four, but it 0:13:59.280 --> 0:14:03.640 didn't actually bother them, and it doesn't old like um 0:14:03.800 --> 0:14:06.120 more so as an older person just thinking back on it. 0:14:06.800 --> 0:14:09.440 Cam was at the Mayo Clinic for almost a week, 0:14:09.559 --> 0:14:11.560 going through a gauntlet of tests trying to get to 0:14:11.559 --> 0:14:14.000 the root of the issue. But she only had to 0:14:14.000 --> 0:14:16.640 wait two weeks to get a phone call that would 0:14:16.720 --> 0:14:22.640 change her life. I was in my parents kitchen on 0:14:22.680 --> 0:14:25.720 the phone the Wins with chords. They said, you have 0:14:26.600 --> 0:14:29.600 Genie myopathy, and I was like, Okay, well, what do 0:14:29.640 --> 0:14:31.240 I do with that? How do I even know I 0:14:31.280 --> 0:14:33.520 still have this? Because I had just gotten five different 0:14:34.080 --> 0:14:38.920 incorrect diagnoses. Though Cam had reservations at the time, the 0:14:39.040 --> 0:14:42.440 diagnosis was correct. She finally had an answer to what 0:14:42.520 --> 0:14:45.200 had been slowly taking her mobility from her since she 0:14:45.280 --> 0:14:51.800 was a teenager. Genny myopathy. It's a hereditary muscle disorder 0:14:51.840 --> 0:14:55.560 that starts when you're born, but the actual symptoms don't 0:14:55.560 --> 0:14:59.680 start until usually your teens or twenties early adulthood. Often 0:14:59.760 --> 0:15:03.520 start with weakness in distal muscles distal meaning towards your 0:15:03.520 --> 0:15:05.920 hands and feet, so often a foot drop where you 0:15:05.960 --> 0:15:08.280 can't lift your feet up at the ankles, and then 0:15:08.400 --> 0:15:11.480 progresses slowly throughout the body and your skeletal muscles in 0:15:11.520 --> 0:15:14.520 your limbs, and over the next ten to twenty years, 0:15:14.560 --> 0:15:16.720 patients may lose the ability to walk and may have 0:15:16.800 --> 0:15:19.800 to rely on a wheelchair. They may have trouble with 0:15:19.960 --> 0:15:24.000 breathing in less common cases, but it is slowly progressive. 0:15:24.720 --> 0:15:28.880 That was Dr Minichia Corp, an Assistant professor a neuromuscular 0:15:28.960 --> 0:15:33.360 specialist at UC Irvine. She's also the doctor currently overseeing 0:15:33.440 --> 0:15:38.000 Cam's care. Cam struggled for years to get answers to 0:15:38.120 --> 0:15:43.360 what was happening to her. Is that uncommon with Jenny myopathy. No, 0:15:43.520 --> 0:15:46.080 it's very common to not have a diagnosis for a 0:15:46.080 --> 0:15:49.960 long time, especially in the days before, maybe five years ago, 0:15:50.000 --> 0:15:53.400 where genetic testing became more readily available and much cheaper. 0:15:54.000 --> 0:15:56.840 So now we can diagnose it pretty fast. I mean, 0:15:56.880 --> 0:15:59.120 I would say, as soon as someone came to a 0:15:59.160 --> 0:16:02.120 ner muscular special lit's clinic, we could do a genetic 0:16:02.160 --> 0:16:05.920 panel and find out within a few weeks. But before that, 0:16:06.040 --> 0:16:08.040 I mean when she was being worked up in the 0:16:08.040 --> 0:16:12.080 early two thousands, genetic testing wasn't readily available, and so she, 0:16:12.200 --> 0:16:15.760 for example, went through multiple muscle biopsies, and they could 0:16:15.800 --> 0:16:18.840 tell there was obviously some kind of muscular dystrophy going on, 0:16:18.920 --> 0:16:21.800 but to nail down exactly what type was a much 0:16:21.840 --> 0:16:25.160 longer process. Cam was now equipped with the knowledge of 0:16:25.160 --> 0:16:27.320 what had been attacking her. It now had a name, 0:16:27.720 --> 0:16:30.800 but coming to terms with her options hope of finding 0:16:30.800 --> 0:16:33.280 a cure and gaining back the mobility she had already 0:16:33.320 --> 0:16:36.760 lost was a battle of its own. When I'm reading 0:16:36.760 --> 0:16:39.640 the prognosis of this disease, I really don't know what 0:16:39.680 --> 0:16:43.160 to think. Because it's telling me, Okay, you're gonna not 0:16:43.240 --> 0:16:45.040 be able to walk, You're going to go into a 0:16:45.040 --> 0:16:49.360 wheelchair and complete immobility. And it's not like I didn't 0:16:49.360 --> 0:16:51.360 believe it, but you look at it and you're like, wait, 0:16:51.400 --> 0:16:53.320 I'm going to not be able to move in the future. 0:16:53.640 --> 0:16:56.040 It's like maybe your mind does some tricks and doesn't 0:16:56.040 --> 0:16:58.520 want to accept that, but you don't know what that 0:16:58.640 --> 0:17:01.240 means until it starts happening. I read it, I knew 0:17:01.240 --> 0:17:03.600 what was going to happen. But as I've gone through 0:17:03.640 --> 0:17:07.680 these stages of the disease and progressing and different mile 0:17:07.760 --> 0:17:11.040 stones in my body, I've realized how little you can 0:17:11.080 --> 0:17:15.640 truly understand textbook jargon of what's going to happen to you. 0:17:16.200 --> 0:17:18.879 And that's something that has couraged the way I share, 0:17:19.240 --> 0:17:22.240 where I make it more personal, because you don't realize 0:17:22.240 --> 0:17:24.399 that when you eat. Even the person that's experiencing it 0:17:24.960 --> 0:17:27.400 struggling to wrap her head around a prognosis that says 0:17:27.400 --> 0:17:30.560 her muscles will slowly deteriorate until she loses all of 0:17:30.560 --> 0:17:33.760 her motor skills. She goes from feeling alone on her 0:17:33.800 --> 0:17:37.879 journey for a diagnosis into a deeper pit of despair 0:17:38.000 --> 0:17:41.359 after having one. It was kind of really dark time. 0:17:41.400 --> 0:17:44.400 It's something that I've recently shared on my Instagram over 0:17:44.400 --> 0:17:47.880 the summer, very lightly. I mentioned that I was serious. 0:17:47.920 --> 0:17:51.120 Idal it was just like, well what do I do? 0:17:51.280 --> 0:17:54.840 What is? You know? What's happening? Um? And there's an 0:17:54.840 --> 0:17:57.119 element of your feeling like your life is over because 0:17:57.440 --> 0:18:00.760 there's this association with disabilities that it's not a life 0:18:00.760 --> 0:18:03.960 worth living, which now is a disability advocate for over 0:18:04.000 --> 0:18:07.919 twenty years, I realized that's a very harmful and incorrect assessment. 0:18:08.000 --> 0:18:11.160 But you know, you don't know that as a child, 0:18:11.200 --> 0:18:14.280 when I looked at someone disabled, you just view it 0:18:14.320 --> 0:18:18.280 as something like, that's so unfortunate. And so we've been 0:18:18.359 --> 0:18:21.879 riddled with all of these narratives of disability and disabled life, 0:18:21.880 --> 0:18:25.520 of that it's not worth living. While still struggling to 0:18:25.560 --> 0:18:28.840 reconcile what her future will be like with her life's 0:18:28.840 --> 0:18:32.160 goals and ambitions, Kim goes back to the physician whose 0:18:32.200 --> 0:18:35.720 dispiriting advice gave Cam the push she needed to take 0:18:35.760 --> 0:18:39.159 back the reins. Then I went to my sociatrists and 0:18:39.160 --> 0:18:41.880 he said, oh, I have heard of that. It's extremely rare. 0:18:42.400 --> 0:18:45.720 My suggestion to you is you should quit college, immediately, 0:18:46.640 --> 0:18:51.159 get a less ambitious job, maybe a secretary, and just 0:18:51.240 --> 0:18:55.800 get ready for a life of like basically nothing. So 0:18:56.119 --> 0:19:03.320 the doctor basically told you you're up against insurmountable odds. 0:19:03.359 --> 0:19:08.480 Your best strategy at this point is just give up. Yes, 0:19:09.280 --> 0:19:12.560 that is exactly what he said, which is really shocking. 0:19:16.040 --> 0:19:19.360 Instead of internalizing her diagnosis is something that would restrict 0:19:19.359 --> 0:19:21.520 her life, she took it as a reason to take 0:19:21.560 --> 0:19:25.720 advantage of every single day from that moment on. Cam's 0:19:25.760 --> 0:19:28.760 attitude from that respect has always been a benefit to 0:19:28.800 --> 0:19:34.280 her because Cam has a very resistant, resilient kind of personality, 0:19:34.440 --> 0:19:36.800 meaning if you tell her she can't do something, she's 0:19:36.840 --> 0:19:39.679 going to say, oh, yeah, I can. And so that 0:19:39.800 --> 0:19:42.280 was pretty much what happened as she said, well, yeah, 0:19:42.320 --> 0:19:44.000 I am going to finish school and I am going 0:19:44.040 --> 0:19:47.040 to have a career, and largely that's what she did. 0:19:47.520 --> 0:19:50.439 I just felt like that diagnosis put a lot of 0:19:50.600 --> 0:19:54.280 time moment in my life suddenly, and that's probably what 0:19:55.280 --> 0:19:59.680 catapulted or the origin of my philosophy of really living 0:19:59.680 --> 0:20:02.800 in a lot. I came from Cam immediately went on 0:20:02.840 --> 0:20:05.560 a soul searching journey to Korea. It was the first 0:20:05.600 --> 0:20:08.000 time that she had visited her place of birth, even 0:20:08.040 --> 0:20:10.320 going back to the orphanage she lived in until she 0:20:10.400 --> 0:20:13.879 was four. The trip restored her, It invigorated her, It 0:20:13.960 --> 0:20:17.800 reshaped her perspective on her future. I booked ticket, I 0:20:17.880 --> 0:20:20.800 left two weeks later, and I think that really helped 0:20:21.119 --> 0:20:24.880 change my thinking. It's not that it wasn't still difficult, 0:20:24.920 --> 0:20:26.720 but it just realizing that there was a lot to 0:20:26.760 --> 0:20:28.960 live for. There's a lot of life out there, and 0:20:28.960 --> 0:20:30.560 there's a lot of things that I want to do, 0:20:30.920 --> 0:20:34.160 and I think I subconstiantly made a decision that I 0:20:34.200 --> 0:20:37.600 was going to live my life as fully as I could. 0:20:38.000 --> 0:20:43.879 Before immobility happened, Cam was still slowly losing control of 0:20:43.920 --> 0:20:45.960 her legs when she returned to Michigan from her trip. 0:20:46.600 --> 0:20:49.199 She quickly realized she needed to live somewhere warmer to 0:20:49.240 --> 0:20:52.600 make her lifestyle easier. Michigan is a lot of winters, 0:20:53.240 --> 0:20:56.240 and what would happen is I'd fallen the ice outside 0:20:56.280 --> 0:20:58.879 my door and just be laying there looking up at 0:20:59.119 --> 0:21:01.120 you know, the dar guy, And I thought, I need 0:21:01.119 --> 0:21:03.080 to get out of here. I need to go to 0:21:03.240 --> 0:21:07.000 warm estate because I know I'm going to get more disabled. 0:21:07.240 --> 0:21:10.639 And I decided to move to California. Out of the blue, 0:21:10.760 --> 0:21:14.359 Jason called and he said, Oh, I'm in California right now. 0:21:14.440 --> 0:21:16.439 If you want to come stay with my roommate and 0:21:16.480 --> 0:21:18.960 I while you look for a job, that's perfectly fine. 0:21:19.000 --> 0:21:22.440 And so that's how it started. It's kind of funny 0:21:22.480 --> 0:21:27.040 because I joked that when she came out here, I 0:21:27.119 --> 0:21:28.920 was like, oh, yeah, you're looking for work, I can 0:21:28.960 --> 0:21:31.480 you can stay with me in my roommates. But it 0:21:31.560 --> 0:21:36.600 was secretly entrapment in the beginning stages and coming into California, 0:21:36.680 --> 0:21:39.000 it was a little nervous, like I didn't technically know 0:21:39.119 --> 0:21:42.119 Jason super well. We're friends, but you know, I'm going 0:21:42.200 --> 0:21:45.880 to go live with them, and I'm having much difficult 0:21:45.880 --> 0:21:48.600 time getting around and it didn't have a job, so 0:21:48.960 --> 0:21:51.480 it was a little scary, but it worked out. I 0:21:51.520 --> 0:21:54.520 got a job. I started working at Mattel and you know, 0:21:54.640 --> 0:21:58.480 my whole life in California began. After her diagnosis, Cam 0:21:58.640 --> 0:22:01.679 was determined to dictate her in dependence and success. She 0:22:01.760 --> 0:22:05.480 started traveling more, moved to California to pursue her design career, 0:22:05.840 --> 0:22:10.000 and discovered the world of disability advocacy. Cam learned to 0:22:10.000 --> 0:22:12.240 share her story and awareness the best way she knew 0:22:12.280 --> 0:22:16.720 how through her design and her art. Sometimes, though, you know, 0:22:16.760 --> 0:22:19.080 get emotional and cry or something like when I was 0:22:19.160 --> 0:22:22.200 drawing the piece that was signifying my beginnings of going 0:22:22.200 --> 0:22:24.200 into a wheelchair, you know, stuff like that, is that 0:22:24.280 --> 0:22:26.280 you're really working that out, So it is a form 0:22:26.280 --> 0:22:29.720 of therapy for yourself. They say, picture's it worth a 0:22:29.720 --> 0:22:33.800 thousand words, And I think Cam really maximized that ability 0:22:33.840 --> 0:22:37.720 to the fullest extent. But yeah, she still gets recognized 0:22:37.760 --> 0:22:40.600 to this day for her arts, and I still see 0:22:40.640 --> 0:22:44.560 comments on our posts and social media just saying like, yeah, 0:22:44.680 --> 0:22:47.159 that's exactly what I'm experiencing, what I'm feeling, or I 0:22:47.240 --> 0:22:49.480 never even thought of the think of it that way. 0:22:49.960 --> 0:22:53.320 Cam uses her art to process and reflect on her journey. 0:22:53.520 --> 0:22:57.479 Her art is beautiful and emotionally evocative, so much so 0:22:57.560 --> 0:23:02.080 that she's gained a significant following community which resonates with 0:23:02.160 --> 0:23:06.560 the new experience of Cam's story, including Dr Corb. One 0:23:06.560 --> 0:23:08.080 of the other ones that caught my eye when I 0:23:08.119 --> 0:23:11.520 was looking through her gallery this week was one where 0:23:11.600 --> 0:23:15.320