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Kelly Lynch - phaware® interview 360

I'm Aware That I'm Rare: the phaware® podcast

Release Date: 11/02/2021

My name is Kelly Lynch. I live in San Francisco. My rareness doesn't really start with PH. PH is probably lesser of the rare things for me, because I was supposed to be a conjoined twin and the other baby just didn't develop so I ended up with, some might call it a parasitic twin situation, where it was just kind of parts and bits and pieces. Essentially, the main thing that I ended up with is an extra spine, so it's like double-helixed. It kind of created this hump which is now hunching me over, which over time has contributed to the PH. So, I've actually probably had PH my whole life, but not to the degree where it was very severe or known.

When I was younger they actually did quite a few surgeries on me, they did a series of three in one year to keep me more upright, because they had an idea that it was going to affect my breathing severely, so they wanted to keep my spine and everything as upright as possible. So they put a halo on my head and attached weights to it and then they took ribs and tried to make kind of a buttress to brace it up, like an internal brace. But that didn't work. Eventually the bones just dissolved. But a bone in my back fused together and made the whole thing just miraculously work out for quite a while.

I did have several surgeries, they did remove a third arm that I had growing at the back of my neck that wasn't really useful for anything, it was just kind of there. There's only one photo of that. My mom offered to throw it away, she didn't know if I'd want to see it and I was like, "Yeah, I want to see it." I honestly wish I could have kept the arm. I'm a bit into my freaky self now. As I got older I started fascinating my own self.

I would visit my family in Ireland every once in a while and the last time I had gone back I was walking around with friends and I couldn't get more than six steps without running out of breath and I was like, "This is bizarre, this is even worse than I normally am." My heart would just start racing. Eventually I just started using a wheelchair and my friends were actually quite worried about me at that time. I had to have people's hands to hold their hands when I was walking to get my arms off my chest. That gave me a little bit of leverage. I didn't know what was going on, honestly and the racing of my heart really freaked me out.

I have a friend who's a cardiologist in Philadelphia. I wrote him first and I said, "I don't think I'm having a heart attack", because it wouldn't keep going for days like that. But I said, "This is kind of bizarre." And he was like, "Yeah, I would definitely go in to check on that." He was basically explaining that sometimes clinic doesn't know how sick you actually are, so just go to the urgent care, or something. I think I ended up going into the pulmonary hypertension cardiologist at UCSF at one point. They had a department just for that. That's when I got diagnosed.

It took me a while to get around to this because when you hear that it's life shortening. As far as I knew nothing that I had was terminal in terms of my body shape and my conjoined twin, my scoliosis and all that. So when you hear that you do have a terminal disease, not knowing what the actual truth is in terms of life expectancy, because you're reading things on Google and you're talking to your doctors and you get 50 million answers.

It's very, very depressing at first, or it was for me anyway. I'm not going to lie, I'm very happy now but I was in a dark spot for a while because one, I had this image that everybody around me would be there and they surround your bedside like in a movie. They're all there for you doing anything you want because you're about to die. I felt like a lot of people were just going about their lives and I was stuck home, because I couldn't get around as well. People don't like to call these days, it's all about texting and I hated texting. So I was just like, "I'm asking you for the courtesy of a FaceTime or a call and you can't even give me that and you don't know when I'm going to die?" I definitely inflated it way more in my head at the time and I actually had to seek counseling, because I just didn't know what to do with it all. They basically said that it gets harder for people that love you more, so the people you thought would be closer to you might retreat. I had to explain to people in general, it's like when someone is ill it's not about you, it's about them, you need to be there whether it's hard for you or not, because that person feels extremely alone. That's part of what I started my TikTok account about because I wanted that message to get out there.

It's not about saying the wrong thing to the person. People give lots of dumb advice to people when they don't know what their body is, like, "Oh, you should eat celery." It's not about that, it's just sure, saying the wrong thing is still much better than not being there at all. But moreover, to say the right thing you can just be like, "What can I do to help you? How can I be there? Do you want to just watch a movie? Talk about regular things?" At one point I joined a Facebook group, it's a different one than I'm in now, but I actually did have to leave the Facebook group for a period of time because there seemed to be a string of people that were passing away at that time, around November of that year. I was like, "This is depressing, I can't be in here, this is making it worse." So I got out of that for awhile, until I came to terms with everything.

I didn't want to wear my oxygen at first because I'm young, I'm 37, I was very vein and I was like, "Nope, I want to look cool, I don't need to look more disabled than I already am." I was very ableist against myself in general even before the PH. I would never get the disabled parking placard because I didn't want the little wheelchair anywhere near me in the car or the desk at school if it had the little sticker on it I was like, "No, not sitting there." I did everything I could to just completely deny being disabled in any way, shape or form. After awhile, I realized that's not really a good thing to do, it's a disservice to other people as well and it's a disservice to yourself, because when you push your body in ways that you shouldn't necessarily when you could just go with the flow and be happier and lighter and spend less time worrying about things and just enjoy the stuff that brings you joy. So it was kind of like a release. I definitely don't like taking my meds still because they make me feel bad. But I try to do them, especially now with COVID, I'm trying my darnedest to not end up back in the hospital.

It was like September of the year before that my niece showed my TikTok. She showed me a funny sound, a funny video and it was a little funny whistley, squeaky sound and I said, "Oh that's hilarious, I want to make one." So she's like, "Yeah, you should do it." Another friend of mine, she's a little bit younger than me too, she's like, "Oh yeah, everybody would think your videos are hilarious." So I just put a few videos out. I would say for the better part of the year maybe I had a few hundred people that followed me. It's the @ sign and then it's toolowfrontrow, it's T-O-O low front row. That is because I'm very short and I love going to concerts and if I'm not in the front row I see nothing but butts.

I had posted a few things that were funny. One kind of went mini viral at one point, because usually what happens is something will just pop off and then that's where you get all your followers and your likes and all your stuff. At one point I did a general disability joke kind of thing, basically teasing at the, "Oh, you're so inspirational", and I'm just living my life getting a soda, kind of thing. So I made that and that one went viral and then nothing for awhile, just here and there. Then at one point I just decided to talk about my disability and I showed myself, I said, "This is what I've got going on.” It just went bananas. I ended up getting hundreds of thousands of views on it, I got the majority of follows from that and one subsequent other video and from then on it just kept going and then I got quite a few new people from the last video. Actually that was how I was discovered as well by the “Born Different” people.

There are so many bits of advice I could give. One thing that helped me initially to get over the vanity of the oxygen, I know people probably heard of the Chloe Temtchine. When I first got diagnosed I was trying to find cute oxygen tanks or cute canulas or something. She said, "Give your oxygen tank a name.” I guess hers was Steve Martin and so I was like, "Okay." Then I had my friends name my little mini one and that's how we came up with Roxygen. So she's got a little personality and that made her less of a medical device. I guess another thing is just speak up, don't take no for an answer. If you're not satisfied with your treatment, if you're not satisfied with your team, if your friends aren't getting it, just keep talking to them. Just keep looking, keep looking for new people. If you need to invite more people into your circle. Don't let yourself be pushed aside because that was what happened for me and there's no reason for that.

I finally came around to being joyous, because you could deal with all the physical ramifications of PH and be sick and bloated and tired and what have you and also be sad and miserable about it, or you could distract yourself and be happy about the things that bring you joy. So at least you're not sad on top of being sick. I think that's where I finally made a turning point.

My name is Kelly Lynch and I'm aware that I'm rare.

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