Cam Ayala 0:02
The person giving the keynote speech was Kathy Bates. And in her introduction in that keynote speech, she’s telling the story of this little boy who had been through so much and almost lost his leg. And he persevered. And he’s here today, can I all stand up?
Kristin Taylor 0:30
Hello, and welcome to how I made it through. My name is Kristin Taylor and I am an executive coach. As the host of how I made it through, I get the opportunity to honor amazing stories that when working as a coach, only I get to hear. I love that with this platform, more stories, more unique voices are shared far beyond just my own ears. All of the stories I get to share with you are about people facing hardship in one way or another, who have the courage to allow the hardship to transform them as they find their way towards greater healing, integrity and wholeness because, much like the immortal words of Robert Frost, the best way out, is always through. Today’s episode is especially significant and meaningful for me personally. You see, 25 years ago, I was diagnosed with a disease called lymphedema. Never heard of it. Well, if that’s the case, then you are not alone. However, up to 10 million Americans and hundreds of millions worldwide suffer from lymphedema and lymphatic diseases. All cancer treatment survivors, including those of melanoma, prostate and ovarian cancer, are susceptible to developing lymphedema. Breast cancer survivors can be at high risk for developing lymphedema and 100% of those treated for neck and head cancer will develop the disease. physical trauma can also result in lymphedema and major cause of lymphatic disease among our wounded warriors or veterans. So what the heck is it you must be thinking to start with limp is the protein rich fluid that accumulates when the lymphatic system for fluid transport is damaged. Lymphedema is a chronic lymphatic disease that results in disfiguring swelling in one or more parts of the body. It can be hereditary which is called primary lymphedema. Or it can occur after a surgical procedure, infection, radiation or other physical trauma, which is called secondary lymphedema. I have secondary lymphedema as a result of a melanoma surgery. My medical team never informed me of the risks of developing the disease post surgery. And so after a couple of months after having my lymph nodes removed from my groin, when my foot in lake began to swell unexpectedly, I called up my surgeon’s office to make an appointment. He calmly explained that I have something called lymphedema. And I calmly thought, okay, that makes sense. I had lymph nodes removed, and now I have edema. He referred me to the lymphedema clinic in San Francisco. And so off, I went for a week of treatment, so relieved they were going to fix the problem. After a day of treatment, when I began to learn the rigorous and time intensive process of how to massage, wrap, pump, and elevate my leg properly, as well as have the need to wear a daily medical grade compression garment that I blew to the top of my thigh and were down to my toes. It finally dawned on me. They were teaching me what I would need to do every single day for the rest of my life. This was not temporary. No one said there was no cure at all, until I finally asked. So you’re saying I have to live with this for the rest of my life? Well, at least you don’t have cancer is what I heard over and over again. When I returned to my surgeon and asked why he had not informed me at the risk. He said flat out and I will never forget this. There was no need to the risk for you is too low. You’re too young and too skinny to get it. Well, apparently not. I was wrapped, and yes, profoundly grateful again that I did not have cancer, but this mighty consolation prize was more than I was ready to handle emotionally. As a 27 year old young woman, it assaulted my vanity. Stole so much of my freedom, of course impacted my health. And to this day, I’m still grieving the emotional impact was and still remains really huge. I have luckily stayed at stage one for which I am tremendously grateful because it could be so, so much worse and is for so, so many people.
We recently I received an email from the lymphatic education and research network called Learn, asking if I would write my story and I and I hesitated. So I emailed the president and CEO, William Repicci and asked, Do you think I should I mean, I only have a mild case. He responded immediately with, there is no such thing as a mild case of lymphedema. And he is absolutely right. After living with lymphedema for a few years, I felt guilty for secretly wishing someone famous would get this disease I mean, who wishes disease on anyone? But my reasoning was okay. If up to 10 million Americans have this disease, please let the odds be that at least one of them is somewhat of influence. Someone who can shine a much needed spotlight on a disease that is woefully misunderstood, misdiagnosed, and mistreated. For a disease that requires expensive therapies and the need for medical grade devices like pumps and medically necessary garments that are often not covered by insurance. Dr. Stanley Roxon, a preeminent doctor in the field of lymphedema out out from Stanford writes this, quote, It is disheartening to learn that the average American Medical School graduate receives an exposure to the lymphatic curriculum for less than 30 minutes within a four year medical education. Small wonder that so many lymphatic patients discover that their healthcare providers are fully equipped to provide the care and solace that they seek. And pretty rough right. But I believe the tides are slowly changing and they are changing because in no small part, people like my guest today are in the spotlight and are using their public platform to bravely advocate for the lymphedema community. This leads me to my guests cam Ayala. I’m going to admit I don’t watch the Bachelorette. So I never saw cam in action as the quote unquote villain as he was apparently done. But somehow a few years back it showed up on some sort of news feed that this young man, a contestant on this hugely powerful, popular show had actually opened up about living with lymphedema. Of course, I was not thrilled to learn that he lives with this disease, but I was so inspired and enthralled by his courage. Yes, much like the passionate and formidable Kathy Bates, thank God for Kathy Bates, who also has lymphedema after battling breast cancer, and is a powerful ally. Someone in the spotlight is finally talking openly about this much neglected disease and community of lymphedema warriors, as we have come to be known. Cam, I am so so very excited that you’re here. You are a total warrior in my book and not a villain. And I so appreciate that. You said yes to coming on my show and sharing your story. All right.
Cam Ayala 8:25
Thank you, Kristin. It is an honor to be here. And thank you for that lovely introduction. But I’m looking forward to the conversation. And it’s not even the theme of misery loves company because yes, though Lymphedema is a condition that a lot of people do suffer with and has caused misery in some capacity. I think conversations like this can be very therapeutic and is needed for the community at large. So honored to be here once again.
Kristin Taylor 8:53
Absolutely. That’s really well said because it is I love that word therapeutic. It feels therapeutic to talk to someone who understands and to know that your story, my story will touch people and spread the word and normalize some of the daily challenges and educate. I would love to just hear about because you’ve got it as a kid. I would love to hear a little bit about your story as a kid and how you came to be diagnosed. Sure.
Cam Ayala 9:24
So you did such a great job in your introduction just kind of giving the audience you know, a general overview of lymphedema and that’s one thing I would always repeat to people is that it is not a one size fits all condition. The onset is vary from patient to patient, the symptoms is varied from patient to patient, obviously severity and for me I have what’s called primary lymphedema, also known as congenital hereditary lymphedema, so I was born with it, but the thing that is unique about primary lymphedema is even though you can be born with it, you don’t necessarily present with symptoms, what you know, right out the womb, right. There’s some patients who right away their extremities or really any part of their body that’s affected. They do have those symptoms, but I didn’t I was a perfectly healthy baby, I have an older sister, so I wasn’t my mother’s first pregnancy. I was also a C section, I believe I weighed like nine pounds, and, and I’m six foot four. So I’ve always been a big child, I’m still a big child, depending upon who you ask, but really, my lymphedema journey began at age 11. And a common thing for a lot of primary lymphedema patients is having what is referred to as a triggering event. And by that I mean what is it that happens physiologically, that starts to make the symptoms, such as either pitting edema, swelling, or episodes of infection start to manifest. And for me, my triggering event was going through puberty. And as I mentioned, a few moments ago, I am pretty tall. And that 11 to 12 year old range is when I was going through my really fast growth spurts. And in my puberty years, and when I was playing just YMCA, basketball, I was having a lot of severe lower back pain after every game. And it even could tell was I was playing that I was limping and almost look like I was skipping up and down the court. And so naturally, my parents would take me to an orthopedic doctor, just to make sure I wasn’t having any, you know, issues with my, you know, growth plates and making sure everything was fine. And in that initial x ray, it was very easy to tell that there was a leg length discrepancy. So my right leg was actually about an inch and a half shorter than my left, which would explain very quickly, you know why I was limping when I was running up and down the court because it’s like the equivalent of playing with one shoe on and one shoe off. And beyond the leg length discrepancy, the orthopedic surgeon also noticed on the X ray that I had some black spots on my right femur, kind of around my knee area, which he presumed to be cancer. So you can just imagine being told that you potentially have cancer at age 11. That was very terrifying. And the first thing he wanted to do was do a bone biopsy. So that surgery where he went in and to my right knee, or my right femur rather and removed a relatively small fragment of that bone just so they could, you know, get the full lab work up on it. It turns out that it was benign, thank goodness. But when I was going through the recovery process, because it was still a pretty radical surgery, I noticed that my right leg, the entire leg started to slowly and progressively swell more and more. Now, when you go to most physical therapists, especially ones who aren’t familiar with lymphedema or other lymphatic diseases, they’ll just assume that most orthopedic surgery is going to have natural postop swelling, right? That’s pretty much across the board for any patient that’s just par for the course. Right? So as these therapists were telling me week over week that my leg was just getting stronger. And it was part of the healing process. I just inherently knew that something was wrong. But I mean, I was 11-12 years old, how am I going to go against these medical professionals, I didn’t have the training or the competency to argue other than just something doesn’t feel right. So after a year of going to countless specialists, and Houston, Texas, and that’s where I was born and raised and currently live. That is in the largest medical center in the United States and actually in the world in Houston, Texas. So it’s not like I’m living in some small, backwoods Texas town where there’s one orthopedic doctor and maybe, you know, one primary care physician. I mean, I’ve seen some of the top specialists in the world there in Houston. And even with that accessibility to these top medical professionals, it still took a little bit more than a year to finally get diagnosed with primary lymphedema. And it was actually at a wound care clinic where a doctor by the name of Dr. Caroline Fife who diagnosed me with with primary lymphedema, and I think the most traumatic part of the diagnosis was the infamous trifold that they handed me in my family in the clinic, because this is in the year 2000, 2001. And we didn’t have Google image search. We really barely even had the internet. You know, we had dial up and, you know, for me, it was just using Instant Messenger chat. I mean, we couldn’t go and do extensive research and the convenience of our home or smartphones just didn’t exist. So and that trifle you see stage three and four lymphedema you see the elephantitis cases. And then when you’re told just like you were told Kristen, that there’s no cure for it and that it’s chronic and progressive immediately. You think that that is your faith, you think that this is what is going to become of your life. And in the formative years of 11-12, and me growing up in Texas, where sports is king, and that’s how most boys and girls really develop their identity. And their self worth was through active year round sports. I played baseball, basketball, and football, and being sidelined from the surgery, and then being told that, oh, you now have a disease that is inevitably going to get worse. And you need to avoid activities like bug bites, and scrapes and abrasions. It’s like, how can you tell that to a 12 year old boy who wants to be a competitive athlete? So that’s where I started a spiral. And, you know, we can get into all the minutiae, but that’s also what started my meeting with the lymphedema therapist and going through the bandaging and being educated on how to massage myself and you know, I got a pump and all the other daytime garments and nighttime garments, and I now looking back, honestly, I think at age No, now I know at age 12 is where I became a man. And I say that just because I was kind of forced to grow up quickly, I could sit there and wallow in self pity and, you know, go the route of you know, I’m just gonna have this disease control me. Or I could fight like hell. And as my parents have always taught me finished strong. That is the path that I chose. And I’ve been fighting every day ever since. And there’s been a lot more roller coasters, which I’m sure we’ll get into. But that is the long winded answer of how my lymphedema journey started.
Kristin Taylor 16:39
Well, a journey like that, thank you for sharing deserves a lot of words. I was 27. And it was like the biggest pill to swallow and saying like, I’m going to fight this because when I was in that clinic, I was seen a lot of women in their 50s 60s 70s breast cancer survivors and others with a lot with lower extremity lymphedema. And it was elephantiasis was just hugely gorge infected. And I’m looking at that thinking, now. Now, that cannot be my future. So the fight was on. I am curious at 12. And that does make sense to me that that’s when you became a man because you had to be to really rally the emotional, mental, physical strength to show up and contend with so that it didn’t progress. What was that like? Like going to school? And were you wearing a compression garment and telling your friends like, what’s that like, as a 12 year old?
Cam Ayala 17:40
So yes, I can go back vividly. And think of that. So, you know, admittedly, growing up, I was always a popular kid, I had a lot of friends. I had an older sister, you know, she was homecoming queen. So I was I was not one who would, who would be on the receiving end of bullying, right? So, but once I got lymphedema, that did change a little bit. And I mentioned a few moments ago with the leg length discrepancy. And with that, that required me to have custom made shoes, like my cleats for baseball and football. And my basketball shoes had to have that inch and a half extra platform built into the shoe. Right? It wasn’t like I could just put an inch and a half in some of those, you know, Dr. Scholls inserts, right, because my foot wouldn’t fit in the shoe if I did that. So it had to externally be put into the shoe. So my hips and back would align. And just visibly looking at that, at the time to kind of date myself a little bit. The Spice Girls were a very popular band. And one of the things that they would wear constantly is those platform shoes. So one of the terms that people used to tease me in sports as they would call me spice boy, because of the platform that I had to wear in my shoes. And with the compression garments. We have come a very long way with compression garments now, but in the early 2000s, you basically had maybe three or four manufacturers to choose from, and you had beige and black. That was it in terms of the color and I just chose black because it felt like it would be better for like my school colors and my basketball uniforms and shoes and whatnot. But this was before you know Nike and Under Armour and Lululemon and all these major professional athletes and collegiate athletes started wearing compression sleeves. So I was kind of an innovator if you will in that space just because no one was doing that. So people actually used to tease me specifically in basketball because you couldn’t really hide it. They thought it was pantyhose so like I even remember being at the free throw line for an away game where the opposing fans would literally be chanting pantyhose, pantyhose as I was shooting a free throw. But I think in life when People are going to be, you know, rattling your cage or teasing you or trying to bring you down, you can let them or you can choose to rise above and that was always my fuel to rise above. So like, if I would make the free throw, I would blow them a kiss. And I would almost kind of flaunt the pantyhose that they thought that I was wearing and success is always the greatest revenge. And to me, that was what really fueled my work ethic as a as a young boy and eventually even to being the first ever NCAA basketball player, a men’s basketball player to play with lymphedema. So I definitely persevered in that regard.
Kristin Taylor 20:34
Yeah, no kidding. I had no idea. That’s amazing. It reveals what that speaks to, for me is that it reveals so much about your character, you know, these situations that no one would have chosen? I mean, when I think about my poor son, who’s such an introvert, if people even look sideways at him, he sort of shatters what are they thinking? They’re that, you know, get so self conscious, so to imagine you as a teenager and having that. That strength of character to be like, yeah, pantyhose, you watch this. Yeah, that says a lot. That says a lot. Yeah.
Cam Ayala 21:08
And it also gave me a lot more empathy for others with disabilities, because when you’re going through it yourself, and you mentioned earlier, about how, you know, you’re stage one, and it could be so much worse off. And, you know, William, or bill, as I call him from learn says, There’s no such thing as a mild case of lymphedema. You know, pain and your own health is relative. And it’s, you know, do you compare it to someone else? Do you compare it to the younger version of yourself? Do you compare it to your aspirations of your future version? So, what my lymphedema journey has taught me is that yeah, though, there’s moments where it could be worse, but it’s important that I control what I can, which is my attitude, my effort, and utilizing all the appropriate compression modalities that I know are physically necessary for me to manage the condition the best that I can.
Kristin Taylor 21:59
Exactly, exactly. Makes me think about too, because I’ve really ridden that ride of like, cable at stage one. Yes, it sucks. Mostly, I don’t think about it that much during the day, I mean, I get really absorbed in what I’m doing. And it you can’t ignore it because it requires so much attention and maintenance. And so I go through this battle with myself like, Okay, I was reading like on Facebook, someone posted, are you guys still in denial like I am that you have it and I thought, I’m not in denial. I’m more in grief. Like I’m riding the emotional wave, the roller coaster and some days I’m great. And some days I’m kind of flattened. And then it’s that thing of my should be really grateful for what I have, and I am. But am I using that to deny my feelings? Or am I using that to what was me? I mean, there’s just the real again, roller coaster. Can you relate to that?
Cam Ayala 22:56
Absolutely. And I’m part of a lymphedema patient roundtable actually was part of it. i Since I started with learn, I don’t do that as much, but one of my favorite lymphedema brothers, his name is Kelly bell. And he has a very unique case of lymphedema, but his whole thing that he has grappled with and his lymphedema journey, because he’s a, he’s a veteran, Coast Guard veteran, and he had a procedure that resulted in him having severe central lymphatic issues. So he swells all over. And he’s just been completely kind of raked through the coals with the VA and the medical system in general. But the thing that has been most therapeutic and cathartic for him is finding his peace. And I think that’s very important for people in general, not just people who have chronic diseases is to find your peace. Now, that does come with a caveat that finding your peace is not a permanent place that you stay in, right, just like happiness is not a permanent emotionally. And I find that happiness and peace are relative to their opposites, right? So happiness is great and feels better when you’ve experienced hardships when you’ve experienced those tribulations and trials and all of the trauma that comes with having a chronic disease because when you have moments where you don’t feel pain you appreciate and that much more, right? You don’t take it for granted. And same thing with finding your peace, you’re going to have those seasons with lymphedema, whether you’re battling a bout of cellulitis or other infections or a seasonal flare up, where you have to recognize it, you have to listen to your body. You got to get through it, and then realize that on the other side of that pain, there is the glory but it takes the work to get to the glory. So you know, one thing that I try not to do is to get too involved in the lymphedema Facebook group because a lot of it is just a lot of whining and complaining and I get it there is a time and a space to that And to have that communal support. But that’s not all that it should be. We need to be celebrating victories we need to be celebrating small wins. You know, maybe it’s, Hey, guess what I woke up an extra 10 minutes earlier today so I could be more compliant wearing my garment or doing self MLD are getting to a local pool so I can stimulate my lymphatic. So it is the, you know, roundabout way of answering your question. It definitely is a roller coaster. And for me, which we may probably get into this further in the conversation. I’ve had 16 surgeries on my right knee because of bouts of infection. And obviously that’s had complications with my lymphedema and is defeated. As I get in those moments or in those seasons of the health spiraling downhill. What I can control is my attitude and how I approach getting through it. And my relationship with God and my family and knowing that the lymphedema community is growing, and it is incredibly supportive when you find those right, lymphedema warriors who can, you know, understand what you’re going through?
Kristin Taylor 26:07
Yes, yes. And I really want to move this conversation in the direction of all those surgeries. I also want to talk about you being on The Bachelorette and the attention and how you navigated that. But I want to pause around the Facebook pages, because it is something that it’s like you need to be cautious with, what are you inviting in. And I would just reframe, whining and complaining to say people are struggling. And it can pull us into rabbit holes of despair, because it is hard. And just to be very judicious with what relationship do you want to have to that community that feels like it’s mirroring your struggle in a way that feels affirming? While at the science, same time moving you in the direction of where are the winds, and that’s a hard balance not not everyone is there. And in a Facebook group, it can be really like deep dives into dark places. I just have such compassion for the isolation people feel, you know?
Cam Ayala 27:07
Absolutely. I mean, just social media in general, a whole just the media in general, right? There’s a lot of craziness that’s happened the past three years Well, I mean, just humanity in general, but especially the past three years, it’s, you know, you you opt in to what you consume content wise. And if you’re going to be a content contributor, which a lot of people are on social media, I always try to make it as positive as possible. But there there is a time and place to be real and vulnerable. And I do that a lot on my Instagram, is it look, lymphedema sucks. I’m not going to sugarcoat it. I’m not going to sit here and Sam, the model patient, I’ve had the best experience and I wish everyone had lymphedema. No, that’s not the case. But I also try to have optimism because I don’t want people who engage with my content or hear my story. I don’t want them to feel a sense of helplessness. There has to be a silver lining, there’s a silver lining in every aspect of our life, you just have to be willing to search deeply to find it.
Kristin Taylor 28:02
Agreed, agreed. And so I would love to hear because I know there’s so much more when you talk about your spiritual relationship to this and what that means for you. But continue with your story. So you get it at this young age, you’ve shared a bit about high school. Keep it going for us if you would.
Cam Ayala 28:17
Sure. So we’ll we’ll fast forward to college. You know, I mentioned I played college basketball. And that was my freshman year of college. And just the physical demands of the game got to be too much for my Olympic team. And I kind of just fell out of love with it. But I didn’t have any regrets about leaving basketball because I feel like I literally given blood sweat and tears and everything to get to that point and get to play at that level that I did. So it was you know, kind of more so like a bucket list. You know how you did this not serving you anymore. Let’s see what else you can do. So then I transferred to a pretty large school Texas a&m University and wanted to get that big school experience versus playing basketball at a smaller school. So I did that and that’s where my Christian relationship dwindled, I was not active with that. So I joined a fraternity, I was not doing all the compression modality as I should have with my lymphedema. So and that’s what I would tell patients when I used to work for a pump company, I would always tell them, Look, lymphedema and gravity don’t take any days off. So you have to approach this from risk reward analysis. If you choose to not wear your garments or you choose to not pump if those have already been deemed appropriate for you. There’s going to be consequences for that. And me being in my early 20s and stubborn and having my priorities on girls and parties and just getting through the college experience. My lymphedema did take a back burner but it was still there, right my leg would still swell and I would have to combat nights of partying with extra time in a pump or wearing my nighttime garment much longer. So It was really once I graduated college. And in the year 2014, that things took a turn even for the worse I was in the professional world, working in advertising. And after I had left a happy hour with a client, as I was getting out of my truck and walking into my apartment at the time in Austin, my right leg just kind of locked up on me. And it was been very quickly followed by the worst physical pain I’ve ever felt in my life, the pain in the knee joint itself. I mean, no one’s taken a sledgehammer to my knee, but I would imagine it felt pretty close because I couldn’t put any weight on it. And my whole body was like quivering and aching. And my first initial thought was that I had a blood clot, I’d never had one previously, but like, something obviously is wrong here, felt my head, I felt a fever. So immediately, my roommate rushed me to the hospital. And they did X rays. And they said, Well, you know, it’s not broken. All the ligaments and everything’s attached, let’s just get you some Tylenol to and discharged, ya know, so they did, and the following because that was on a Friday. So then the following Monday, I visited with an orthopedic surgeon who happened to be one of my clients at the time, I was redoing his website. And he took syringe needle and aspirated about almost 200 cc’s of fluid from my from my knee joint. And, again, I’m not a medical professional, but when he aspirated that fluid there in clinic first off that hurt like hell, he didn’t warn me, he put maybe a little bit of lidocaine. So I’m sitting there, I took my hat on, which is biting it. And I was trying not to scream, because this is one of my clients. And he’s now working on me, like that joint fluid look like chocolate milk, it was brown. And I didn’t know what normal joint fluid look like. So I was like, I guess this is normal. And instead of sending those syringes off to a lab, that orthopedic surgeon took those syringes and assume when those little red biohazard boxes that they have there in the exam rooms, and said that should alleviate some of the pressure let’s, let’s get an MRI and see, you know, see the next day. So I did the MRI and I got a call from him almost immediately. And he said he’s been an orthopedic surgeon for 20 years and has never seen that much swelling in a joint with no acute injury. So you know, it wasn’t a meniscus or ACL or anything with the bones there’s I think you have an infection and I’m like well, that joint fluid, not tip you off there.
Kristin Taylor 32:30
Cam Ayala 32:32
I had immediately prompted my family to transport me from Austin back home to Houston where I had emergency surgery that that afternoon and the medical center where they cleaned out the knee and put me on a PICC line IV with very strong antibiotics. And it was a pretty major surgery and it turned out that it was an infected joint I had Group B strep. So that was episode number one in 2014. So to spare you all of the details because we could be on here for hours, but from 2014 that initial infection till December of 2020. I had nine of those episodes all sporadic, all random, but all requiring that same open surgery and physical therapy and antibiotics and just physical emotional and financial trauma. So it ended up being what’s called osteomyelitis, not cellulitis. cellulitis is a pretty common infection that a lot of lymphedema patients in some capacity get, mostly if they don’t take good care of their skin. If there’s other you know, comorbidities that contribute to that I’ve never had cellulitis osteomyelitis is substantially worse. So that one I’m actually Yeah, and this is the first time I’ve been public about it. But likely here at the end of April, early March, I’m actually having to get an above the knee amputation on my island buddy, my leg. God, I had a botched total knee replacement last year. And the whole reason of getting the total knee replacement was to prevent that knee joint from getting reinfected as it had been. But unfortunately, the surgeon put in the wrong size hardware, and I’ve just been in terrible pain this whole past year. And so I just found out earlier this week that yeah, that was not the right job and amputation is going to be the best course of action for me. So that’s a whole nother topic. But my relationship with God has never been stronger. I’ve connected with other above any amputation men my age, and I’m just looking forward to a new quality of life that doesn’t involve as severe chronic pain I’ve been dealing with for the past year now.
Kristin Taylor 34:42
Yeah, yeah. Oh my god. So Cam, I don’t have words. I’m sort of speechless. I mean, what does one say in a situation like this except for thank you for sharing. I’m so sorry. That that is really the choice that you have. And I’m really, really grateful that Have you feel so connected in your relationship with God in the midst of this and that you’re getting the support you need? Thank you for sharing that with us.
Cam Ayala 35:08
Yeah. So I imagine now this would be a good segue into my Bachelor Nation…journey, because there’s actually some coincidental connective tissue between this amputation. And in my journey there. I’ll get into that. So what do you what are you most curious about? You have like a specific question about about my journey there? Or what? I’ve done a ton of these conversations, I’m happy to answer whatever questions you have about it. I’m no longer under contract, I can tell the truth.
Kristin Taylor 35:39
You can tell the truth. See, I never watched it. So I don’t have all that like ins and outs of like, what did she say? What did he say? What was that like? Like, I’m not as interested in that what I’m really interested in is what that must have been like, for you navigating the demands of the show. And I just feel like there’s this pressure to fit in. And it’s so much about appearances. And they’re taking you different places for different activities, and you’re living with this illness. To what extent did you share to what extent could you share? And how was that a catalyst for the rest of moving forward? Like it sounds like you’re going to share with us that’s, that’s where I’m coming from?
Cam Ayala 36:20
Yep. Yep. All great questions. And I will hit all of those. So I was on a couple seasons ago of The Bachelorette. It was with Hannah Brown, also known as Alabama, Hannah. So she was the Bachelorette. And when I was going out there, so flying and getting ready, I didn’t bring my pump because we could only bring two suitcases, I just didn’t have the real estate for it. I brought my nighttime garment that I sleep in, and I brought in a couple of legs, sleep, daytime garments. But truthfully, I did not wear my daytime garments, because to what you were kind of hinting at in the question, I was very self conscious about it. And bear in mind, before I went out there, if you were to go to any of my social media platforms, Facebook, Instagram, I didn’t have a single post talking about lymphedema. It’s something that I hid. I wouldn’t say I was ashamed of it, but it’s definitely something I did not want to call attention to. I didn’t do any lymphedema support groups. And another thing too, is, this is one of my other things that I’ve noticed, being you know, kind of a lymphedema influencer, if you will, is the male representation is almost non existent. Because most of the publicity or the spotlight is mostly around breast cancer related lymphedema, I get it because that’s where most people can relate to it, right? But we don’t see much representation with primary lymphedema. And we don’t see much representation with men with lymphedema and I both of those things. So prior to the show, again, I didn’t talk about it at all. And it’s something I’ve rarely even talked about with my teammates and basketball or even my coaches because I didn’t want special treatment. I didn’t want people to look at me, like I had something wrong with me. And, you know, to give me that, that sympathy I didn’t want I just wanted to be normal. I just wanted to live my life and not have my lymphedema defined who I was, right. So, so get that. So going out there. Especially in seems they film where I was wearing shorts, I wasn’t wearing my compression garments. And because I’m relatively slender and fit. I don’t have a whole lot of presentation and swelling below the knee. It’s mostly my knee and kind of up to my hip area. So the average person when they look at me, they can’t even really tell that I had it. So I then was grappling with Okay, well, at that point, I was 29 years old out there, and I had still had all those surgeries I had mentioned. So my physical state of my knee wasn’t great and and I had seen past episodes of the season, just doing a little bit of research, I was by no means a fan of the show wasn’t a diehard bachelor follower. So but I did know that oftentimes there’s like one on one dates or group dates where things can get pretty physical. And it didn’t even really dawn on me until I was out to like, oh crap, like, what happens if I go on a group date, and we’re playing like football or rugby, or something that I just physically couldn’t do to me? That would have seemed very calculated for me to pull him aside and have that conversation then. I wanted to be upfront and clear right out the gate because if you you know, when the experience, you know, you end up engaged and then you know, Lord willing, you end up married and for me, I take the sanctity of wedding vows very seriously. And one of them is it’s in sickness and in health. So, in my heart of hearts, I knew is very important to be transparent with her as a person proactively as possible to talk to her about my condition. Where I may have messed up in the process is before I had that conversation with her, I had approached all the guys and the bachelor manager said, Hey, guys, just so you know, there’s something very serious I need to talk to Hannah about, I haven’t had a chance to talk to her about it. But I really need to get this off my chest. This has been something that has lingered in my past relationships, I’ve lost girlfriends in the past because of my lymphedema, because things would be going great. And then I’d have a bout of infection. I’m in the hospital. And all of a sudden, those women at the time weren’t prepared or willing to be somewhat of a caretaker when I was recovering. So I was like, okay, if I’m going to be in this journey any longer, I need to just get this off my chest and see if she could handle it. So everyone seemed pretty cool. Like the guy’s like, yeah, and I said, guys, like, I’m not trying to suck up the clock, you’re like, I just, I need a quick 510 minute conversation. And then we can all go about our, you know, our tailgate party, because that was the context it was at a tailgate party. So I pull him aside. And I basically lay it on line, I tell her about surgeries. I tell her about like what lymphedema is. And I say, look like, you must be looking for a strong man. Well, my strength is more than just physical. It’s spiritual, and it’s emotional. And that has come from my lymphedema. So I know there’s a lot of guys out here who are a couple years younger than me who have shredded abs and perfectly healthy bodies. And if that’s what you’re looking for, that’s just not me. And she actually received it very well and even shared some of her medical history with me when she was a little girl. And at that point, I’m like, okay, the elephant the room has been addressed, I can move on with the journey and just go from there. However, the producers decided to tell some of the other guys in the mansion, that I was basically making up this medical sob story. So she would feel sorry for me. And so one of the guys in the mansion, pulled Hannah aside, like he was rescuing her from me, told her that I was making up this medical sob story. So she would give me a pity rose and keep me around in the journey longer. So unfortunately, she took his word over mine pulled me back aside almost immediately. And when a woman says, Hey, we need to talk, that’s typically not a good thing. She did just that. And she accused me of being calculated and manipulative. And that was the first time in my life that someone had really made me feel guilty for having lymphedema. And the hardest part about it was I got sent home that night from the journey. And about three weeks later, when it actually aired, right, because this doesn’t just happen in real time. The show edited so heavily my conversation with her that I just sounded like I was so discombobulated, and like I was making up the story, they even edited out the word lymphedema, so no one would even know the condition I had. And I talked about how I almost had an amputation in 2016. And then they put that in there too, where it made no coherent sense at all. And there’s a lot of like, literally 8 million plus people watch the show. So that was my like lymphedema coming out experience, and it was completely butchered and robbed from me. And the narrative was from me coming from a place of honesty and vulnerability to now Kansa manipulative villain who is leveraging a condition he has, so he can stay and so that she would feel sorry for me. So as you can imagine, with social media, I received hundreds of direct messages from strangers all across the world, questioning my character not even thinking that I had limpid email giving me death threats. So there’s a lot of PTSD that came from that. And when people ask me, you know, Hey, would you do it again? I say yes, because it was that vulnerability of even putting myself out there that I then got the call from from Bill repeat z at learn after I filmed the Bachelorette, and this is before I went on Bachelor in Paradise, and he invited me to a breast cancer conference in Dallas. And at that point, I’d only been home from filming like three days, so I was very kind of depressed. And when you’re out there, you don’t have your cell phones. You can’t confine in your friends, your family. It’s almost like quarantine before quarantine was what it is now. And so I felt it very difficult re acclimating into this reality when I had been painted as this villain. So I started to believe that that I was his villain. And when Bill invited me to this conference, this breast cancer conference, I was this close to not going, but he said, there’s someone very special who wants to meet you. And so I drove from Austin to Dallas that that evening, and the person giving the keynote speech was Kathy Bates. And in her introduction, in that keynote speech, she’s telling the story of this little boy who had been through so so much and almost lost his leg. And he persevered. And he’s here today. Can I all stand up? And so that was a moment where I knew God had put me in the right place that it’s not about me anymore. It’s about the lymphedema community. And that night, Kathy invited me to dinner with her and Bill, so it was us three. And she said, Tam, you need to understand that your pain is your strength and that the lymphedema community needs you. Yes. And that was my calling to go all in on it. And I’m like, you know, what if I’m going to have a platform from the show, despite if it’s villainous or not, I’m going to use the notoriety to bring awareness to lymphedema because if you look at it on paper, Kathy and I are complete opposites, right? She’s a relatively older female with secondary lymphedema and the upper extremity due to her breast cancer, whereas I’m a relatively younger male with primary lymphedema and my lower extremity. But at the end of the day, we still deal with the same condition, we still have the same mission and that’s learns mission, which is to fight all lymphatic diseases and to one day, see a cure and to have better treatment and education and research out there. So future lymphedema patients don’t have to fight the same fight that I’m fighting right now. And I’ve been fighting since I was 11 years old.
Kristin Taylor 46:20
Yes, yes. Wow, people can’t see me because this is only audio. But I’m like, you know, being very animated in my response to all that you were sharing. When I think of the initiation to get to the place you are, as this enormous ally and Ambassador and someone who’s really fighting this fight was such great integrity, what they put you through is just so wretched. I mean, that is just despicable. I am stunned and horrified that you had to go through that. But look at how you are showing up in your life right now.
Cam Ayala 46:58
Yeah, I mean, it has definitely given me some once in a lifetime opportunities like right after that, I got to give a keynote at Harvard Medical School. I’ve got to give a TED talk at Texas A&M, where I graduated from all about lymphedema patients and families that I’ve met, all across the world, not just the United States and the other advocacy groups that I’ve joined and formed, and there’s still a lot of tough days, right? Because I get just countless emails and direct messages from people who are helpless. And I’m not God, I can’t save them. I can’t cure them all. I can only just try to be a set of ears and an open heart and to lend them encouragement and give them some advice. But you know, I still have to caveat Hey, you know, run this through your lymphedema therapist, your doctor because I’m not an MD or a therapist, but this is what’s worked for me. Right. And the sad part is, is that we have a systemic failed medical community. I mean, you mentioned Dr. Roxanne’s quote, at the beginning about medical school students only getting around 30 minutes of lymphatic system, not even lymphedema, right? That’s like passing through one of those towns where you blink and you miss it. Imagine being a med school student, you learn more about sexually transmitted diseases than you do about the entire lymphatic system, which literally touches every vital organ in our entire body from head to toe. It’s so we got work to do, we’ve got worked. And that’s why I’m with LE&RN.
Kristin Taylor 48:23
And I’m so glad that you’re with LE&RN. You’ve touched a little bit on what you’re doing with LE&RN and how it’s just this beautiful balance between you and Kathy are huge voices and advocates like I keep repeating, let’s get up to present day in terms of the work that you were doing, how you’re doing it any resources that people can be aware of, in any message with the time you have with us today that you really want listeners to understand.
Cam Ayala 48:48
Sure. So you know, I mentioned this, like the first part of our conversation about lymphedema not being a one size, condition, one size disease and same thing for your listeners who may have lip edema or other lymphatic diseases or lymphatic anomalies. There’s a full spectrum, right? So I want to definitely be inclusive and, and mindful of those individuals who may not just have lymphedema. So what I say is, there’s going to be bad days and there’s good days, give yourself grace, but it does require discipline. I can’t stress that enough. When I used to work for a pump company right before I joined learn. One thing that I would tell patients because they would always ask me, you know, how often do I have to use this device? I would always use the analogy I said, Look, you should treat your lymphatic health the same way you would your dental hygiene, you should brush and floss every day because what happens when you don’t when you take days off or weeks off, you develop things like gingivitis, bad breath, cavities, all these other complications. The same thing with your lymphedema. You can be in denial of it, but if you avoid it all together, there’s going to be a point where you can avoid it and you have complications like cellular litas or you go from stage one to stage two to stage three, and you start to get this really fibrotic tissue that becomes, in some cases impossible to reverse. So the more self care you can provide, and the more tools you can equip yourself with, the better off you’re going to be. And I will also say that, you know, you also have to be willing to experiment, it’s going to be a lot of trial and error. It’s taken me now 22 years of trial and error. I’ve tried all different compression garment manufacturers, I’ve tried all different pump manufacturers, I’ve seen dozens of lymphedema therapists. I’ve even had lymphedema surgery at the Cleveland Clinic, right. So there’s a lot of different avenues. You have to be willing to go through those. But most importantly, you have to be willing to advocate for yourself because when you’re dealing with a medical system that generally has taken lymphedema and treatment like an orphan just throwing it to the side and not prioritize that you have to be willing to fight and advocate for yourself. And you’re going to have to get 567 opinions more opinions than the average person because most of these doctors are unfortunately not prepared or educated to not only diagnose but to offer better treatments or better recommendations. So going to sites like learns website, which is lymphatic network.org or some of the social media support groups and anyone can reach out to me anytime it’s @camromayala on Instagram and Facebook and just send me a direct message and I’m happy to provide you with any you know, tips and tricks that I’ve had that’s been successful for me or get you in contact with maybe a local therapists in your community that can they can help you because that’s one thing I will kind of close with is for example, if a patient who is getting weight loss or bariatric surgery, it is a requirement for most of their insurances that they go through psychological therapy and evaluation. However, for a lymphedema patient, whether they’re getting it post cancer treatment, or their primary, like me, doctors aren’t recommending that. And there is such an emotional piece to this condition that it is so important to address. So whether you’re religious and you have a great church that you go to, or if you’re agnostic, and you just want to talk to a counselor or a therapist, I encourage that because when you’re dealing with a condition that is chronic and progressive in nature, it is important that you have that self awareness of your emotions and your feelings, but also the physicality to know your your own barometer when something’s off and to listen to that and to have a team in place to have a protocol in place. Because there’s going to be ebb and flows. There’s seasonality to lymphedema. If you live in Texas, like I do, when it’s really hot and humid. Regardless, my body is going to swell more during that time than say, you know, December in January.
Kristin Taylor 53:11
That’s right. That’s right.
Cam Ayala 53:13
But never give up. Hope that is that is my thing that I tell patients, I even have a tattoo that says just keep limping. So like just keep living. You got to just keep lengthen, and you know, keep your eye on a higher power, because that’s what’s gonna get you through good days and bad days.
Kristin Taylor 53:27
Yeah, yeah, powerful, powerful words. I’m so glad it is you that is speaking them. And I know that they’re going to make a huge difference. I am eternally grateful for the way in which you are showing up for so many people. And I’m just really impressed with your ability to teach and guide and normalize that this is a real fight and you’re in it. So cam, thank you from the bottom of my heart truly.
Cam Ayala 53:56
Thank you, Kristin, appreciate it look forward to future conversations.
Kristin Taylor 53:58
As do I, as do I. Cam’s strength may not be physical. It is so so much more than that. Like he said it’s emotional and spiritual and yes, and part comes from living with lymphedema. We each have our own stories and journeys, and clearly camis learning and sharing in a way that gets us closer to the mission to fight all lymphatic diseases, to have better treatment, education and research and to one day Yes, have a cure is plot platform allows him to share inspiration and insights from living with a chronic and often progressive disease. I loved when he said finding your peace is not a permanent place you stay just like happiness. It’s not a permanent emotion, happiness and peace are relative to their opposite. So happiness is great. And when you have that experience of hardship all the tribulations that come with living with lymphedema, they enable you to appreciate shared those moments when you don’t have struggle or pain, you appreciate them more. Like you said you never take them for granted. As for more words of wisdom, never give up hope. For him, it’s all about staying committed and connected to his higher power. And knowing that there is a silver lining, there’s a silver lining in every aspect of our lives. He says, we just have to be willing to search deep enough to find it. March is lymphedema Awareness Month and for me, this March also represents 25 years of living with lymphedema. It is such an honor in this month of all months to share with the world camp story. I am in fact moved enough to use a word I reserve only when it is truly warranted. And that is the word awesome. It is awesome to know that he is leading the charge in this fight, to one day, find a cure and to do everything possible to ensure our battles have not been fought in vain. To learn more about lymphedema, and to support the cause, please visit the Lymphatic Education and Research Network at www.lymphaticnetwork.org Our theme song and sound engineering was provided by Shane Suffriti you can listen to more of Shane’s music at www.shanesuffriti.com. If you have a story about making it through something that forever changed you or want to tell us what you think about our podcast, send me an email at email@example.com If you enjoy today’s episode, we humbly ask that you share it with others. Thank you for listening. We’ll see you next time on How I Made It Through.
EIQ Media, LLC 56:56
How I Made It Through is produced and distributed by EIQ Media, LLC. Elevate your emotional IQ with podcasts and content focused on overcoming adversity, leadership, mental health, entrepreneurship, spiritually transformative experiences and more.