[This is a slightly edited transcript of the conversation I had with Shelby Sunflower. To listen to the episode, click here.]
ADAM SULTAN: Well, hello, and welcome to Friends With Deficits. I'm your host, Adam Sultan, and my next friend is Shelby Sunflower. Shelby's an artist, a sign language interpreter, an aerial performer, and has she got a lot to talk about! In fact, her story is so big it wouldn't fit on one episode. So this is Part One, with Shelby.
SHELBY SUNFLOWER: Five years ago—I don't know if the right word is “sustained”—I “gave myself” a traumatic brain injury, or a TBI. I mean, I'm walking and talking fine. I have a handful of various symptoms that I never knew were associated with it or were a result of it at all. I keep telling the medical professionals, and I actually found a neuropsychologist that I'm talking to. She's a new therapist in my life, and she specializes in clients with TBIs and various brain injuries.
It changed my life. I just didn't realize, like I said—and sorry, that's another thing. I'll start talking and then I kind of get off track. So if I get off track, my bad--
ADAM: That's okay.
SHELBY: –or forget about what I'm talking about—that's another symptom that's been kind of bothering me lately. I always thought, "Oh, I'm just wonky or something." But no, it's associated with the injury. I realized I've been struggling with it a lot more. It's just been more apparent recently.
I have been professionally interpreting for eight years. I've been doing performance interpreting for seven years. When we're interpreting, we use in-ear monitors with special headphones that connect into the sound pack, and we usually get a direct vocal feed from the band. So, what the band is hearing in the microphone, we're hearing as well. And over the past four or five years, sounds and certain pitches and tones will make me dizzy. It almost feels like someone's going to push me off the platform that I'm standing on. And I just thought, wow, this is kind of odd. Then there's various visual symptoms—I call it “dial up internet eyes.” I'll move my head, and my vision lags. So my head's all the way to the right, but my eyes are still seeing in panels of left-left, mid-mid, to right. It's very interesting. I tunnel vision a lot. I see stars a lot randomly. I just thought, I guess I'm just wonky. I never really told anybody about it. But this past year, the dizziness kept getting worse.
A side story: Three years ago, I started taking circus and aerial arts classes. I do static trapeze and corde lisse, which is smooth rope, aerial rope. That's a lot of upside-down and climbing. I noticed I was a little bit dizzy in the beginning of it, and some classes I'm dizzier than others. I can definitely tone it down. I communicate with my teachers a lot, like “Oh I don't feel comfortable doing that,” or “Hey, I'm gonna sit that out.” But this past year, like I said, with doing the live music work and doing the circus and aerial arts, I was just noticing it oddly feels like I'm standing on a cruise ship. My eyes are lagging and tunnel visioning and I'm almost blacking out over nothing. I'm just sitting there—it's not like I'm shaking my head or headbanging.
I went and saw an ENT, because I thought, Oh, I’m dizzy: ear problem. I just assumed that. When I got in there, the pre-appointment forums were like—I felt like I was writing a novel about myself! I've had some very odd medical things in my life, I'm not gonna lie, so I'm not new to the damn long-ass forms. So, I'm filling this out, and I got to the dizziness part. This is the first time I've ever been asked by a medical professional or on a form, “Have you hit your head?”
Now, go back five years ago when the incident happened. I don't know what to call it other than a "scooter stunt gone wrong." I still ride motorcycles. I have a 2011 Harley 883. That's a big scooter.
ADAM: Wow, no kidding!
SHELBY: And one night in my apartment parking lot—I called it Evil Knievel Wannabe Stunt Gone Wrong—I tried to ramp the scooter, and I was not wearing a helmet. I flew off the scooter and I landed on the left temporal side of my head.
ADAM: Oh my god, without a helmet?
SHELBY: Yeah. I was not under the best decision-making efforts at the time, I'm not gonna lie! I am a strong advocate of all the gear all the time. Now I have a full-face helmet, I wear my jacket, I wear boots, I wear gloves. I wear pants. You don't see me without my gear on—even if it's 105° out. And all my gear is black and leather and hot as hell!
I never really processed the injury or anything until five years forward, now, when symptoms are getting worse. I'm trying not to be so damn hard on myself like I can be. I'm the nicest person to everyone else, but I can be so cruel to myself. I'm sure a lot of people can relate to that.
Anyway, I ramped it, I fell on the left-hand temporal side of my head. It was like the lights of life just turned off. I immediately blacked out. I wasn’t unconscious for a long time, I remember that much. I woke up and I checked my teeth, because I was like, oh my god, please let me not have knocked out all my teeth! I had braces from second grade to my freshman year in high school. I was very young and I still have a fear of dentists. So of course I'm gonna check my teeth, and all my teeth were there.
This is gross, but I threw up. Apparently, if you hit your head, blackout and throw up, those are like the top three worst symptoms. My friend came running down. He's like, holy shit, dude, are you okay? And I was like, Yeah, I'm fine—that hurt. I was a little out of my head, I guess—I had just hit my head really hard. We went back up to my apartment and turned on a movie and I passed out. And then I woke up two days later in my apartment.
ADAM: Nobody was there?
SHELBY: Nobody was there. Just my pets. He laughed—he left, he didn't laugh—I mean, when it happened, we both did laugh, I'm not gonna lie. For the longest time, we joked about it and stuff. And I just never really realized the seriousness or the magnitude of the injury. I did not have health insurance, and I'm very stubborn, and I never went to the hospital. I never told a doctor about it. I never did anything about it
ADAM: After you woke up, two days later?
SHELBY: Yep. I did not go to the hospital.
ADAM SULTAN: How did you know it was two days later? You just looked at the calendar or something?
SHELBY: Yeah, I looked at the calendar. And there are some human biological functions that still happen.
ADAM: Ah.
SHELBY: I'm pretty sure I was in a mini coma. I woke up on the couch, and my cats are freaked out, my dog's freaked out—she definitely pooped and peed in the apartment. I was very disoriented. And I was just like, holy shit. what just happened? Scooter stunt gone wrong, I hit my head. Okay, I can speak, I can see, I'm talking—I'm fine. I got up and just assumed I'm okay. And never did anything about it. I honestly do not know why.
ADAM: Did you tell anybody?
SHELBY: Definitely not. I was ashamed and embarrassed of the carelessness of my actions and carelessness of my decisions because I had been riding for quite a while before that. And even before I started getting into scooters and motorcycles and stuff I did competitive English horseback riding for ten-plus years--
ADAM: Dressage?
SHELBY: Yeah, I did dressage, stadium jumping, and cross country.
ADAM: Wow, that's great.
SHELBY: And I loved it. Oh my god, I loved it. But what I always, always, always, always drilled in my mind and in my training was safety and helmets. I think that's the number one reason why I didn't tell anybody, because I was ashamed. Of all the people to crash without a helmet, Shelby being one of them? What? It's like, unheard of, you know? And I did go to work two days later. I probably should not have, but I did. I just started working and just kept going.
Fast forward now to five years later. I told the ENT about that. I giggled a little bit about it, "Ha ha, you know, ‘Hey, y'all watch this moment gone wrong!’" He did not think it was funny—at all. And he told me he didn't think it was funny. He was like, “I'm surprised you're alive.” That’s when I think the reality of it really set in.
ADAM: This is five years later that you kept this secret?
SHELBY: Yeah, five years later. I honestly didn't really think much about it. And these past five years of my life, I've had a lot of loss. I've lost five friends, five family members, and four—I call them furbabies. People are like, "pets," but I call them furbabies. Two of them were family doggos that were born at my parents' house, we owned the mom and dad and even the grandmother dog. There's a whole family tree of dogs. I grew up with these two dogs. And then one of my chinchillas got really sick. And one of my cats got very sick at the same time.
The past five years of my life had been just a whole combination of loss and grief. It’s still something that I'm processing and working through right now. And I think because of just so much grief and loss and all these tragedies at the same time that I'm, you know, trying to work and support myself. I lived alone in an apartment and I had five pets. Five furbabies! I love animals: I'm a foster mom failure, I'll foster an animal and then I'm like, Okay, I guess you're mine.
I just never really thought about it. I was like, okay, I guess I'm okay, I'm alive. I'm walking and I'm talking and I can still interpret, so I guess I'm okay. I never thought of it, to be honest. But the ENT, because of my unique health history, was also doing all this very thorough testing. This ENT, he's incredible—MRIs, CT scans, etc. Unfortunately, at the time when I was getting the MRI and stuff done, I had such a severe respiratory and sinus infection that my mastoid bone was not showing up on the MRI. So for a while there, he was telling me, “These symptoms that you're having, I believe is because you were possibly born without a mastoid bone.” That’s the large, honeycomb-like bone that's behind your ear. If you're touching your ear and touch your skull, it’s right behind your ears, it's in that area. And I was like, “What the hell?’ He’s talking about this very intense surgery and bone grafting and all this stuff. I got this news, actually, in-between two weekends of ACL last year. I was working ACL—this was my seventh year working it—and I get this news and I was just like, holy shit. So this was on my mind for a while.
Then the sinus infection went away, the respiratory infection went away. I got better. Several months later, I finally got my CT scans, and he confirmed it in the teladoc appointment in March: “Okay, your CT scans are perfectly normal. You have a mastoid bone, your ears are normal, everything's completely normal. However, all of your symptoms are associated with your TBI.” It shocked me, to be honest, because I was like, “Wait, that happened five years ago. I never got help for it. How can it be bothering me now?”
“Well, how long have all these other symptoms been bothering you?” And I told him—it's throughout the past five years since the injury. So that's when it hit me all over again.
ADAM: Is it common with a TBI for symptoms to arise later and later in life, as opposed to a whole bunch of them that maybe go away through time?
SHELBY: I’d never heard the term TBI. I didn't even think about it. I always thought, Oh, it was just a pretty bad concussion. But there's Post-concussion Syndrome, brain injury, TBI, MTBI (for Multiple Traumatic Brain Injuries.) Unfortunately, I've had multiple ones. I had one in middle school where I did blackout and have a seizure. And again, never told anybody, because I thought my parents were gonna get mad because I was being stupid that time, too, when I got it.
ADAM: Is there a prognosis for it? Is it supposed to get worse, or stay the same, or get better?
SHELBY: I've read about other survivors, like survivors that are 19 years out. Some that it just happened to a week ago. Some symptoms completely go away, some come and go, some are triggered. Some are just ongoing. My ENT actually prescribed me to go to a neuro rehab, and I'm seeing an occupational therapist there. I was very reluctant at first. But their safety protocols are great; the place is clean, I felt confident in going, and this month is my second month now that I've been going. I go twice a week for this very unique kind of—it's basically like physical therapy for your eyes and brain. It's interesting. I remember the first appointment that I went to, I thought, “Oh, wow, this ain't shit! I'm following a pencil with my eyeballs and my head’s still. This is nothing--I do frickin pullups and climb up 30 foot ropes for fun!” Then I went home and slept for five and a half hours. It was so exhausting. She kicked my ass, I was humbled by her. She humbly me put my ass in place.
ADAM: Man, that's incredible.
SHELBY: Apparently my dizziness—I'm still trying to get into to a neurologist. They're really hard to get into, especially if I'm not having like seizures and my injury is not fresh—it's a five-year-old injury. But apparently, in reading other TBI survivor stories, it's not uncommon for them to go through a very long kind of “Now I'm going to this specialist, now I'm going to this person, now I'm going to that person,” and it’s almost like you're pulling teeth and nails to get some help. Especially if the injury's old. Because they're like, oh, you're walking and you're talking and you're fine, why are you here?
It's been interesting. It's been a huge realization and then also a forgiving process, to be forgiving to myself for what had happened and not blame myself and be, “You're stupid, how can you be so careless?”
Survivor’s guilt is very real. It's very real. I have a buddy, a fellow motorcyclist. We actually have the same helmet. It's a Shoei helmet—they're one of the top helmets you can buy. She always wore the best of the best gear, always safe, always riding in good mental stability; not angry riding, or emotional riding, or sad, or anything of that nature. Always sober. And she got into an accident. It's crazy—she did not break any bones, no bruises. I mean, if you saw her helmet, there was like two tiny pieces of grass in there. If you looked at her helmet, it didn't even look like someone got into an accident. And the brain damage was so severe. She was in a coma for three and a half months, and she did not make it. Then here I was a year earlier from her incident, being careless and not wearing a helmet. Brain injuries are all different. What can happen to one person can totally affect someone differently. Here I am, and I hit my head—straight landed on my head on the concrete. I was going 40 miles an hour. And I lived. Why did I live and this other person didn't, when she's wearing all the gear and all the things?
So that survivor guilt is very real, and a very fresh piece of it I'm working through. She was very prominent in the motorcycle community. Her siblings are very well known, and it still is a shock. It's just crazy what can happen. She is in the group of the five friends of mine that I had lost in these past five years, and that's been on top of the incident and the injury. Navigating that and—really, in these past five years, I just didn't even think about it or focus on myself. It was more: funeral after funeral, person in the hospital after person in the hospital, three people on life support and making that decision to take them off. It’s just been very loaded with grief, that I'm still processing and going through it, on top of trying to take care of myself and be more careful, and things of that nature.
Another thing that I've done that I started three years ago, like I mentioned, I started doing circus and aerial arts. I was talking with the OT at the neuro rehab, and interestingly enough, (and the ENT agrees as well)—I mean, I'm definitely going to talk to a neurologist to confirm with someone who specializes with brains and stuff—they believe that the two major factors why I'm doing significantly well, aside from the very odd symptoms that I have (my heat tolerance is not like it used to be, or I tunnel vision, or I'll randomly see stars and things), all those various symptoms aside, I'm doing pretty damn well for someone that never got any type of medical attention for it or told anybody about it. They believe that’s because I'm a sign language interpreter, and the cognitive processes and demands that it takes to interpret a visual language, and being bilingual—that on top of doing the circus arts, like being upside down; climbing upside down or climbing right side up and moving your equilibrium and your head and your eyes like that—those are the two reasons why I'm doing as well as I am. Which is like crazy to think of this. “Wait a minute, you hit your head real hard, girl, why are you hanging upside down on a rope twenty feet in the air?” That's the last thing people think you should probably be doing. but if you keep moving those and moving your head and kind of changing those positions and challenging that, then the repetition of it actually desensitizes that feeling and visualness of dizziness, which is crazy.
ADAM: No kidding. Were you aware when you started to get involved in aerial stuff that it might be helpful, or were you scared because you had the TBI? What was your thinking in getting into that?
SHELBY: To be honest, I blocked myself from taking those classes for so long that the one day that when I took those classes I was just, like, fuck it, I'm doing this. I constantly was, “You're not flexible enough. You're not strong enough.” All these little nitpicky things—again, being pretty mean to myself and blocking myself from something that I wanted to do for so long. I just finally was like, No, I'm going to take this class. Actually, one of the other interpreters that interprets Bedposts (Bedpost Confessions) with me and is a very close friend of mine, she was the one that had sent me the Facebook event that said they had $10 Try The Sky classes, where you can you can try various apparatuses there and pick which one you want to take classes in. I was like, Alright, I'm gonna do it. And the day that I did it. That could be a whole story within itself. The night before…I just partied very hard the night before, like, all-nighter party.
ADAM: Out of nerves? Or you just happened to party the night before?
SHELBY: Yeah, I'm not gonna lie! During the past five years, there was a lot of a lot of stuff that I just don't remember. Just numbing out, partying and trying to not even think about reality. The night before, I hung out with my friends, we had a lot to drink. I was very hungover, super hungover. I woke up and I was like, “I'm not going to that class, I feel like shit.” And then there was a voice in the back of my head: “Respectfully, bitch—you have been wanting to do this for a very long time—you get your ass up and you go to that class!”
I got dressed, brushed my teeth, did my hair—I probably looked scary as hell! But regardless, I went in. And because you’re a beginner and you're trying apparatuses out, it's not like, “You got to do 20 pullups,” or anything like that. It was very light. I was sore for sure, because I wasn't used to doing these type of things. But it wasn't too terribly physically demanding. I picked the trapeze because I was the most scared of it. I think it's because as a kid, I hung upside down by my knees so many times and I've fallen so many times that it scares me. With the trapeze, there are moves where you're hanging by your knees, and you're hanging upside down. And honestly, it scared the shit out of me the most, and I was like, You know what, I want to take classes in this. I signed up for trapeze classes and have never looked back.
I was hugging the porcelain throne after that lesson, I'm not gonna lie! But I was so proud of myself, and so excited for the classes, and starting classes. It was the first time that I wasn't beating myself up for the past and the things that I was going through. I was having such a hard time with the losses and the sick animals, and making the decisions to put them down because there's nothing else that you can do, and you want to do more, and you feel like you could have done more all the time as a pet parent or furbaby parent. Finally, I had just allowed myself to do something that I always wanted to do.
This November will be three years since I have started into aerials. I call myself a circus aerial Padawan! And my teachers, I call them all Jedis. I'm a Star Wars nerd—I love sci fi and reading sci fi, and stuff like that.
Now I'm seeing a new therapist. She's a neuropsychologist, and she specializes in patients with TBIs and stuff like that. And she was definitely like, Whoa, be careful--
ADAM: Maybe you should wear a helmet!
SHELBY: Yeah, but there’s mats there. I feel very safe. I feel confident in my strength and conditioning too, so that if something were to happen, I don't think I would fall. I'm definitely not the level of Cirque de Soleil and doing those challenging moves, but of all places where I feel confident and feel like I can take up space, it's there. It’s just so much fun. I love it so much. I honestly never in my mind would think that doing this would actually help me become less dizzy. I've told people, my very close friends, I'm figuring out the symptoms and why all these things are happening—it's all actually related to the TBI. My very close friends know about the injury because I told them after it happened.
ADAM: Did any of your friends comment about you being different now, in retrospect? Do they feel anything's changed about you since the TBI?
SHELBY: No. I have gotten some feedback over the years, and I’ve noticed in videos of myself doing live music work, or sometimes storytelling shows and stuff, that I look more stiff than I used to—if that makes any sense—like my stance and the way that I'm signing and the way that I'm holding myself. I never put the puzzle pieces together, but the reason why I was standing so firm into the ground and so stiff—oh my god, my shins and my calves and thighs and stuff would hurt after festivals—because I was so dizzy and off balance and worried that I'm gonna fall over. That's why I'm like standing so hard into the ground or into the stage. So, I've gotten the feedback that, Hey, you look a little bit more stiff than you did.
ADAM: But you didn't have any personality changes or anything like that, that were significant?
SHELBY: Not that they were aware of, but I can tell. There's some times where my mood or something—I can go zero to 100 sometimes, and I am a redhead! They're like, ooh, redheads are feisty! There's truth to that. But my natural hair color definitely is not a culprit of some of these zero to 100 mood swings that I can experience sometimes. And when they happen, I would get frustrated in the moment. "What the hell's happening? Why am I even reacting this way? Holy shit, the cortisol that I'm pumping in my body right now is going to give me a heart attack!" Like, how intense. I started reading about mood swings, and I already struggled with depression and anxiety all my life. I get into ruts where it's worse and more debilitating than I've ever remembered it being. But my friends haven't—I don't think I've been around them constantly enough for them to see me in those lights. And I also try to be super cognizant and control myself in mood swings.
My very close friend and soul sister, she was the only person that when I told, when the injury happened, didn't think it was funny. It was the first time in my life that she's ever jumped my ass for something. This girl, she is so sweet, she would not hurt a fly. She is the sweetest damn person you'll ever meet. This was the first time I've ever seen her get on someone's ass or yell at someone, and it was to me, because she did not think it was funny what had happened, and that I didn't go to the hospital. She kept telling me to go, and my stubborn ass didn't go. I just kept focusing on the fact that "I don't have health insurance, it's going to cost an arm and a leg. I’m paying for my own apartment. I can't afford this, I can't afford it." I think that's another huge reason why I was just like, I'm not gonna go to the doctor, and that shouldn't be. That shouldn't be, but it is. It was a thing.
ADAM: I'm gonna assume that you have less of that stubbornness now, that if something like this happened again, you'd get to the doctor.
SHELBY: Yes, I definitely would! Crazy story #2: In this time of these five years of the injury and the loss, I got this amazing tattoo. This huge photorealism tattoo of David Bowie, on my right leg, on the side of my calf. The shop that I went to, you could eat off the floor, cleanest place. You can have surgery there, it's so sterile. The artist, he works for long periods of time, and probably about four and a half hours into the session, he noticed my nerves were reacting quite a bit and I seemed kind of in pain. And he was like, Hey, we can wrap it up here. And I was like, Oh my gosh, no. Where he was in the process—so, it's David Bowie, and he's got the Aladdin Sane lightning bolt, and he's got a galaxy underneath him. And this guy is incredible. He works from bottom up, and so he had done the galaxy, and he was on David Bowie's chin and the bottom part of his jaw, and it was four and a half hours in. He only does shading, this guy is incredible. I didn't want to walk around with a jaw on my leg all summer, so my stubborn ass was like, Please keep going. And he was like, Okay. So, I did nine and a half hours. I totally shouldn't have, and he warned me, "It's close to the ground. Those tattoos can get infected easily, you know. Wrap it up, wash it when you get home, wrap it up again."
Also, on my left foot, I call it a sock—I have a whole tattoo on the top of my foot that goes up my leg. I thought, well, I have one on my foot. I know what I'm doing. But I guess with the trauma to my body of getting nine and a half hours of tatting done is enough to break down anyone's immune system, and your body is struggling already. I touched it on something, and I got blood poisoning. It was awful. I almost had to get my foot amputated, I'm not lying!
I went to the ER. I had red streaks up my leg. It was crazy. I called the tattoo artist. I sent him pictures. And also, the same interpreter that works at Bedposts with us, the one that got me into the circus classes, she was the one that was, "Girl, you have to go to the hospital, you have an infection." So I went, and since then I have not been stubborn and have not let not having health insurance be a reason why I won't go to the ER if it's something that's, you know, severe enough like that. It was bad; my whole foot was super infected. I failed all their nerve tests, and they were like, we're probably going to have to amputate your foot. Wait, whuut? It was crazy. They wanted to keep me in the hospital on IV antibiotics, but I told them—again—I don't have health insurance. At the time, I think I was 25 or 26. And I was like, "I'm a healthy young 25 year old! Just give me a shot and some medicine." And they did! They gave me a shot in my butt cheek. I was on two different antibiotics for four months, and one of them I had to take three times a day and the other one I had to take twice a day. It was awful. Oh my god, it was bad.
So, David Bowie the tattoo – I almost lost my foot over it. And he's had to fix it because my leg swelled. My leg got huge, and it messed the tattoo up a little bit. But he was able to go in there and fix it with shading. I was so scared to get it fixed. "Oh my god, I don't want to get another infection!" while he just tatted the hell out of my leg.
But since then, my stubbornness of "I'm not gonna go to the hospital"—I don't do that anymore.
ADAM: And hopefully you don't get nine-and-a-half hour tattoos either.
SHELBY: Yeah. No, I won't do that again.
………..
ADAM: All right. Well, thanks for listening. And thanks again to my guest, Shelby. She'll be back for part two more of her story. If you'd like to help support Friends With Deficits, you can subscribe to us wherever you listen to the podcast. Sign up for our newsletter at www.friendswithdeficitspodcast.com. Check us out on Facebook, Instagram, let us know if you have any deficits we should cover--we're always looking for new friends. And finally, if you'd like to help contribute to the show with the small monthly or one time donation, a dollar, or whatever you can afford, check out www.patreon.com/friendswithdeficits. You'll gain access to behind the scenes stuff, what I'm up to, what our guests are up to, extended interviews, outtakes, and you can be part of the community that supports this show. There's a cute little video there that explains what it's all about. And it's constantly changing and improving, and our supporters help that happen. So perhaps you can be one too. thanks again for listening. I'm Adam Sultan, and remember: “You're not alone.” [SOUNDBITE OF DAVID BOWIE MUSIC]
