Living Boldly with BBS: An Interview with Kathryn Blalock

Rachel Tierney: Hi Kathryn! Thank you so much for being here today and for your time, we really appreciate you being willing to share your story and what living with BBS is like for you. And just who you are as a person, and I'm really excited to be able to share this, too, with our broader community. So if you'd like to start out by just introducing yourself – your name, how old you are, where you're from. That would be great.

Kathryn Blalock: Awesome. Yeah. So glad to be here today. My name is Kathryn. I'm from Edmond, Oklahoma, and I'm 30.

Rachel Tierney: And what would you say describes you the most if you could describe yourself in maybe 3 words, or who you are as a person, what would.

Kathryn Blalock: I would say, kind, courageous, and sassy.

Rachel Tierney: I love that, that's awesome. And what do you like to do for fun? I know you have some pretty interesting hobbies, so.

Kathryn Blalock: So for fun, I love to bake, and I love country music. I'm a huge Oklahoma state fan, so I love going to football games. What else? I love riding horses – I do equestrian therapy, and then I row on the river, and I box for exercise. [I love adventure such as roller coasters and enjoy snow skiing and water tubing].

Rachel Tierney: So so cool! How often or how long have you been doing all of that.

Kathryn Blalock: So horse riding, I wanna say, like 3 or 4 years, and then boxing like 3.

Rachel Tierney: Nice. So you're basically a pro, that's what you are. So when along your journey, were you diagnosed with BBS?

Kathryn Blalock: I was diagnosed when I was 5.

Rachel Tierney: And do you think that at that age, being diagnosed affected your story differently – knowing [that you had BBS] from a younger age?

Kathryn Blalock: I honestly don't know that it affected me that much like when I was younger, because, like, I was just living life and being a little kid. It's affected me more now that I'm older, and I can understand it better.

Rachel Tierney: Right. And would you say that the challenges that you've faced – obviously they change over time – what would you say is different now versus what has kind of stayed the same?

Kathryn Blalock: Can I just kind of go through a timeline?

Rachel Tierney: Yeah, absolutely!

Kathryn Blalock: So like, I mean, there's so many different challenges. When I was a baby and toddler, I had really bad reflux, and then my kidneys were enlarged. [I was selectively mute and did not speak outside the home until kindergarten. Daytime vision was not yet affected although I was night-blind]. I had a bunch of OCD symptoms – everything had to be grouped together or I would get mad if somebody didn't have something exactly how I wanted it. In grade school I didn't have a ton of friends. I had a few, and making friends has always been difficult. [Building strong friendships is hard because I am misunderstood as others don’t understand BBS or its complexity. I had major anxiety and daytime vision started to decline. In 4th grade I could no longer see the chalkboard or the fine line of a pencil].

So it was in middle school when I could understand that I was different and couldn't see. And it was hard because kids teased me, and my books were larger – I had large prints like worksheets, and everything had to be bigger. And the kids noticed, and it was not fun. I didn't have a lot of friends in middle school – I had a few like 6th-7th grade, and then 8th grade friendship started to dwindle. [Middle school was quite hard as my vision was progressively getting worse and OCD became severe by age 11; I couldn’t complete the school day without calling my mom to pick me up so I could go shower as I had many fears of contamination].

[High school was a challenge- as I had to have so many accommodations and was constantly teased. I was a bit more social, had a small group of sweet friends and was VP of service projects for FCCLA].

[It had always been my dream to attend college at Oklahoma State- I attended OSU for a short time; had the time of my life- was a Paddle People member, a spirit group, but school was extremely hard- I found it difficult to get the same accommodations like I did in high school, surprisingly it was not mandatory for professors to make accommodations – this led to me having to drop classes].

[I was navigating a sleep disorder which of course made me late for class and OCD was at its worst – there were many days I was stuck in my room compulsively cleaning. Vision loss was a huge hurdle attempting college- I had still not accepted my disability and refused to use a white cane to navigate because I didn’t want to stick out or be different. OCD had become debilitating and I sought treatment. It was a long and hard journey to get the help I needed as many facilities were not equipped or willing to take on the challenge of a blind person. I eventually found one OCD treatment facility that was willing to take on my complex case, Neurobehavioral Institute].

And since then I've just been living at home, and vision has been stable for a few years. This past doctor's appointment the doctor could tell that my vision has gotten a little worse, but I remain hopeful for Gene Therapy or something like that one day. And then today I still have, you know, quite a few medical issues. I was recently diagnosed with POTS, and then mainly the vision and OCD are the big struggles I have. [All throughout my life I’ve had frequent ear trouble and spine issues led to immobility for months. It’s difficult because doctors don’t know enough about this rare, complex syndrome].

Rachel Tierney: Right. And obviously, you know, vision is one of those things that I'm sure has impacted you throughout the course of your life a lot as it's changed over time. And I think when people think about BBS, that's one of the first things they're like, “Wow!” You know, the vision impairment must be such a challenge. But I really admire how you can talk so openly about, you know, even as you were figuring all of that out, and you just had maybe some bigger worksheets and that sort of thing, but it was when the other kids noticed that it was really a challenge. So are there any other of those less obvious obstacles that you feel like you encounter every day? And how do you work through those?

Kathryn Blalock: So yeah, I would say, I love fashion, and I love hair and makeup and all the girly things. I'm a Barbie girl!

Rachel Tierney: The Barbie bag in the back is perfect.

Kathryn Blalock: Yeah.

Rachel Tierney: Love it.

Kathryn Blalock: But I mean, it's hard because colors – I can't really tell. I somehow coordinate my outfits, but I don't know how I do it. It just takes me longer, like, I can't really tell what I'm doing. I have to have somebody help me with my hair and makeup, which is fine, I just wish I could do it by myself.

[I love to cook and be creative in the kitchen, and I do great.I have high contrast knives and measuring cups, I just have to have some help – like asking someone to make sure the meat is cooked all the way or see if cookies in the oven are golden brown. Another example is being a blind girl attending sporting events. The average person might think it’s crazy for someone who can’t see to attend a football game; however, I can’t necessarily see the game, I rely on other senses like hearing and feeling the game].

And then I think the biggest day-to-day struggle is the fact that I can't drive that frustrates me a lot because I have to rely on somebody else to take me where I want to go, or if I have an appointment or something, I can't just be like, “Okay, see you all later.”

Rachel Tierney: Yeah, that's a perfect example of those little things that people might not really think about that you face every day. And you still don't let them stop you from having an adorable outfit and great nails and gorgeous hair, you know, being your Barbie girl. That's so awesome to hear and I really admire that. You know you're still making that happen for yourself and there's nothing stopping you.

Kathryn Blalock: Thank you.

Rachel Tierney: What would you say helps you get through the tough days where you know, maybe it's that you can't drive somewhere, or maybe you're experiencing one of these challenges. What helps you get through that?

Kathryn Blalock: So I think having stuff to do, like my fun activities that I enjoy and look forward to, is a big help. And then also, I think, finding a peaceful spot where you can just go and relax and meditate, or whatever. And for me, that's my swing outside. I have a little corner on the patio, and love to sit out there and listen to the birds, or listen to music.

Rachel Tierney: What kind of music do you listen to?

Kathryn Blalock: I love Country.

Rachel Tierney: Right, you did say that! I love Country, too. So who's your favorite?

Kathryn Blalock: I love Luke Bryan.

Rachel Tierney: Yeah, nice. Awesome. That's really cool. I really like your advice, too, of just having your spot where you're you, and you're safe. And that's really cool.

Kathryn Blalock: Yeah. [The BBS community has also been a great resource; especially the families of BBS facebook- here I have connected with others like me and it’s super helpful to have a place to ask questions and gain knowledge about BBS I am a member of the BBS sports club- this group has given me the opportunity to meet others with BBS in a fun environment].

Rachel Tierney: What's something about BBS that most people don't know?

Kathryn Blalock: I think that people don't really realize that OCD is related. And recently I have learned that it is related to BBS. And then also, I have recently found that a lot of BBS individuals are having symptoms of POTS which I didn't know was correlated with BBS.

Rachel Tierney: Right, and I heard you mention that earlier. So when did you find out that it was correlated?

Kathryn Blalock: Back in February.

Rachel Tierney: So that's recent then.

Kathryn Blalock: Yeah.

Rachel Tierney: And has that helped at all to have the diagnosis and to kind of know maybe, what is going on in that realm? Or has that just complicated things?

Kathryn Blalock: It's complicated. But also it's a little helpful to know, like, okay, this is why I'm having these symptoms.

Rachel Tierney: Yeah, yeah, definitely fair. Well, thank you so much for sharing all of that. I know it’s very personal, but I also want to talk a lot more about you, and who you are.

Kathryn Blalock: Okay.

Rachel Tierney: What is something that makes you really proud of yourself?

Kathryn Blalock: So I love babies, and people call me the baby whisperer, and just it makes me proud to be able to nurture and have that special, I can't think of the word, a special talent to be able to be with babies, because it makes my heart happy. And then also, I'm very organized, and I'm pretty good at executive functioning skills.

Rachel Tierney: Nice!

Kathryn Blalock: Yeah.

Rachel Tierney: Awesome. What do you use those executive functioning skills to do?

Kathryn Blalock: So I like to manage my doctor's appointments and medications. Stuff like that.

Rachel Tierney: Yeah, awesome. And I'm sure it's a lot to keep track of.

Kathryn Blalock: It is. Yeah for sure.

Rachel Tierney: Who would you say supports you the most?

Kathryn Blalock: I would say my family.

Rachel Tierney: That’s nice. And do you have siblings?

Kathryn Blalock: I have 3 siblings. I have an older sister, and then 2 younger brothers.

Rachel Tierney: Wow! So you're kind of in the middle, but at least can boss your brothers around! Thank you so much again for sharing all of this.

Kathryn Blalock: Yeah, absolutely.

Rachel Tierney: You had to kind of look back over your journey and your experience. If you had to tell either a parent whose child was just diagnosed or, you know, maybe somebody your age who has just been diagnosed – what would you say to them? Or do you have maybe at least one or two pieces of guidance or support that you would share?

Kathryn Blalock: So I would say, like advice I would give to somebody or a parent whose child has been diagnosed is that BBS is super complex and complicated, and just to love your child or loved one, whoever it is that has BBS, and just support them. Be there for them.

Rachel Tierney: I feel like that's so true and so real that is, you know, the first thing you can do, and you know, figuring out that journey. It seems like everyone with BBS is so different, and they're all their own people so it's really cool to see how you've shaped your life. And you know, it's really amazing.

Kathryn Blalock: Thank you.

Rachel Tierney: So how has living with BBS shaped your outlook on life?

Kathryn Blalock: I don't let BBS define me. I feel like it's taught me to be resilient and to live life to the fullest.

Rachel Tierney: Yeah, and that's so great. And it's so clear that you do all of that, you know, with all your different hobbies and everything that you love and enjoy. It's really awesome to see.

Kathryn Blalock: Yeah.

Rachel Tierney: Okay. So I just have one last question for you.

Kathryn Blalock: Okay.

Rachel Tierney: If you could tell the world one thing about living with BBS, what would it be?

Kathryn Blalock: I would say the world needs to know that BBS is super complicated, and we're all different, and the world needs to be kind and understanding.

Rachel Tierney: And let's hope it does. You know, we see a lot of progress being made and a lot of research. And you know hopefully that all comes to fruition. But I think you're right, step one is really the love and kindness aspect. So that's a great message to share.

Kathryn Blalock: Thank you.

Rachel Tierney: Do you have any questions for me?

Kathryn Blalock: Not that I can think of!

Rachel Tierney: Okay, well, thank you so much for your time, Kathryn. I really appreciate it and just your honesty and willingness to share and inspire others. It's really awesome. And if there's anything else you need, just let me know. It was so great to talk to you!

Kathryn Blalock: You, too. Thank you!