Episode 53: Follow me, I’ve got this.
Kimberly talks with Annie Lapidus about the joys and challenges of being in an immersive theater production about blindness, the importance of connection, and living with a rare disease.
To learn more about Von Hippel-Lindau, visit vhl.org
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Appalachian Assistive Technology Loan Fund for assistance.
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [email protected]
Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.
You can find the transcript in the show notes below when they become available.
Transcript AI voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.
Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.
Sam Moore Hello, Kimberly Parsley.
I am Sam Moore.
Kimberly Parsley Hey, Sam, how are you doing?
Oh, better now that I'm in your Zoom presence.
Kimberly Parsley It took us a while, didn't it?
Zoom was having a day.
Sam Moore Yes, you folks miss that, but we had to work extra hard to get Zoom to cooperate.
I mean, we needed a different passcode because the one I've been using to get in, you know, the last two or three times, it was no longer valid.
They of course had to give me a new passcode to work with.
So I'm sure by the time we do this again in a couple of weeks, Kimberly, I'll need another new passcode.
Kimberly Parsley Zoom likes to keep us on our toes, doesn't it ?
Sam Moore It does.
That's a, that's a nice way of putting it.
Kimberly Parsley Yup.
And there's a, I believe there's severe thunderstorm warning as we record here in Bowling Green, but all seems well.
Sam Moore So yeah, you're, you're still, you know, you're still with power.
That's a plus.
Kimberly Parsley All, all good, all good there.
So it's a stormy May 2nd here in Bowling Green.
It's right before Derby Day in, by the time this comes out, the Derby will have, well, hopefully have been run and decided.
Sam Yeah.
Unless they postpone it, which, you know, they'll, they'll run in the rain, but, but if there is lightning, no doubt, they'll have to take some precautions.
And just for the record, Kimberly, the, the horse that I am choosing is that the name is Sandman.
Kimberly Okay.
Now you're putting that out there and so it's, it's going to be on the record.
Sam So I'm putting that out there.
It's not Sam man, but it's close.
Kimberly Now, do you, apparently people bet on everything these days.
Do you, do you gamble on, uh, on the horse races?
Sam Not, not generally when I've gone to the local racetrack here in Henderson Ellis park, uh, uh, a few times.
And, and when I go there, I'll, you know, I'll play some small bets, but I've never, I've never betted on the Derby or anything.
I just, I just pick a horse and, and my horse hasn't won often enough for me to, to start putting money on them.
But, um, you know, if I, you know, if I get on a winning streak here, you know, two or three years in a row, then maybe I'll start putting money on them.
Kimberly But now do you pick a horse based on anything other than just, just gut feeling like the name?
Sam yeah, it's generally just, uh, just the name.
Yeah.
And if I have some, something that sort of resembles my name or, you know, something else after my own heart, I'll run with it.
I can make a case for journalism because, well, I wasn't a journalism major, but my major was in the school of journalism and broadcasting it at Western Kentucky university.
So when I took some, I took a news writing class, so I could, I could do journalism, but that's the favorite.
So I don't want to pick.
Kimberly Oh, the favoriteâs name is Journalism?
I haven't looked up anything.
I used to follow it, but I, you know, I don't now.
Sam Yeah.
I don't want to pick the favorite.
So what, by the time you folks hear this, you will know how my horse sandman did.
Kimberly You'll know how bad or good or good Sam is at picking horses.
Sam So you'll know whether or not to follow my lead next year.
Kimberly Right.
Right.
Exactly.
Exactly.
So, uh, we are going to talk to my interview guest later on in the show is Annie Lapidus and she is a, yeah, she is a friend of mine.
She's from Pittsburgh.
She is blind and has a rare disease called Von Hippel-Lindau and we are going to talk to her about that and, because it is VHL awareness, VHL for Von Hippel-Lindau awareness month.
And so I'm going to talk to her about that.
Now, Sam, you're, you're kind of a technical person.
Do you get excited about the global accessibility awareness day?
Sam I can appreciate the global accessibility awareness day.
I'm not as knowledgeable about it as I probably should be.
And you give me way too much credit by the way, for being a technical person.
You know, I just, I try to learn what I got to know, but I'm not one of those gurus that just, you know, I'm not one of those innovators that tries out the new technology before everybody else does.
Kimberly You know, I do like, I do like my, my technical gadgets.
I really do.
So I, I try to pay attention to that and that's on May 16th this year.
So the, the big companies,
Sam so two weeks from the day we're talking here right now.
Kimberly Your Apple and your Google, they, they tend to, well, hopefully they will come out with some, some new stuff and get everybody excited about, uh, that for people with all kinds of disabilities.
And so other things coming up in May are
Sam My birthday on May 19th.
Kimberly Well, happy early birthday, am
Sam Just had to throw that out there.
So people have plenty of time to shop and, you know, give me presents and everything.
Kimberly So everyone, everyone send in your, uh, send in, uh, emails to demand and disrupt at gmail.com.
Happy birthday.
Hop on the Facebook page.
Sam It'll be the big 37
Kimberly 37.
Wow.
I'm telling you, at least you're not on one of the big, the big zero numbers, you know, Sam true.
Yeah.
And I'm, I'm one of those, I try to live gracefully and each time I hit a new age, I just look at it like, well, getting there beats the alternative.
Kimberly And that is true.
And so other months is this is May is ALS awareness month, also known as Lou Gehrig's disease.
So there's that arthritis awareness month.
And I did not know this, but when I was researching, did you know that arthritis is the leading cause of disability in the United States?
Sam I did not know that.
Kimberly Mental health awareness month, always very important.
And this one, I found interesting national mobility awareness month.
And so that kind of highlights the different technologies and mobility aids and things, and the people who use them that, uh, helped to make the world more accessible for lots of different folks.
So I think that one's interesting.
Um, you know, I was recently listening to something, I heard someone popular and I
Sam somebody popular that narrows it down.
Kimberly Can we wait, wait, wait, wait, it was Jon Stewart.
It just takes me a while.
The brain is not as quick as it used to be.
Sam Jon Stewart. Yes, he is very popular.
Kimberly Jon Stewart said the phrase confined to a wheelchair.
And I was like, wow, Johnny boy, you ought to know better.
You ought to know better than to say confined to a wheelchair. They're wheelchair users, you know.
Sam And wheelchairs give us mobility, those that need it.
Kimberly They do.
They do.
So, uh, it just highlights how important it is that we have mobility awareness month, you know.
Sam Those with wheelchairs are mobile.
They are, you know, because of, uh, because of the, the wheels.
Yeah.
Yeah.
Kimberly So, so, um, I wrote into John Stewart and let him know, I'm sure he'll be appreciative of that.
Sam Oh, did you send him an email?
Kimberly Oh yeah.
Oh yeah.
You know, I'm always up in everybody's business.
That's just how I roll.
Itâs just what I do.
Sam I'll be, I'll be listening and see if he mentions Kimberly Parsley from Bowling Green, Kentucky.
Kimberly I doubt it.
I doubt it.
But maybe he won't say confined to a wheelchair anymore.
Sam Maybe he just won't let that word use that word again.
Kimberly Exactly.
And, uh, you know, his podcast today, the weekly show with John Stewart had our own governor, Andy Beshear on.
Sam Did he now?
Kimberly Yes, he did.
Uh, did you know that governor Beshear has his own podcast now?
Sam I did hear that where did I hear about that.
I think on K and N the Kentucky news network.
I heard about that.
Kimberly The Andy Beshear podcast.
Sam So yeah, very uniquely named, you know, really creative, really creative, but you know, when you're the governor, I guess you, I guess you do that, you know, you can get away with any kind of name.
People, I guess, I guess so people will tune in, but yet, but no, and all honestly, I do, uh, you know, I do applaud him for taking any means necessary to, to reach his audience and I'll probably check out a few episodes myself.
Kimberly Yeah, I haven't yet, but, but I probably will too.
It seems like, uh, it seems like our governor might have his eye on, uh, something bigger coming down the pike. Don't you think?
Sam Maybe if he, especially if he's entering the podcast realm.
Kimberly Yeah, yeah.
I know this is, this is the big time right here, you know, there's governor, but then being a podcast host, that's a whole bigger deal.
Sam I'm telling you that's, that's way bigger than being governor that wears being governor out.
Kimberly Exactly.
And then, uh, so we have also, of course, coming up, we have Cinco de Mayo.
And you and I were talking about that and because you will be doing trivia.
Sam I will be hosting trivia at rock house on the river in Henderson on the evening of May 5th.
That's how I'll be celebrating.
But, uh, anyhow, hopefully a number of, uh, people will be playing and, uh, enjoying just enough margaritas to have fun, but not too many that they can't, you know, concentrate and Excel in trivia.
Typically a lot of people, uh, think that Cinco de Mayo is, uh, the date of Mexico's independence day.
But, but that's in fact not true.
Mexico's independence day falls on September 16th every year.
Uh-huh.
So we got a little ways to go.
Kimberly So what is Cinco de Mayo then?
What are we celebrating?
I think here we're just celebrating like Mexican-American heritage, you know?
Sam Yeah.
And the French is, uh, you know, the French army's victory over the, or the Mexican army's victory over the, uh, over the French army on that day in, uh, the battle of Puebla.
That's what I was trying to retrieve off the air here.
Funny how being, being on air brings out the best in you, but it was the, the battle of Puebla on May 5th of, uh, 1862, the Mexican's victory.
So yeah, that's, that's what we're celebrating on Cinco de Mayo.
Kimberly Interesting couple of weeks coming up, lots going on and interesting show coming up with my interview.
You all stay tuned for my interview with the very, very awesome Annie Lapidus.
Music transition
Kimberly Parsley Welcome to demand and disrupt a disability podcast.
I am here with my good friend, Annie Lapidus.
Annie, how are you?
Annie Lapidus I'm doing great, Kimberly.
I'm so happy to be here with you.
Kimberly Parsley Thank you so much for joining us.
We are going to talk about you, but we're also going to talk about Von Hippel-Lindau because May is Von Hippel-Lindau awareness month.
And I don't think most people know what that is.
So tell me what is Von Hippel-Lindau or VHL for short and about your VHL journey in particular.
Annie Lapidus All right.
So VHL is a disease that both Kimberly and I have.
It's a genetic disorder.
There's actually a VHL gene and it's a tumor suppressant gene.
And there's something wrong with that tumor suppressant gene in us.
And so we create lots and lots of tumors in our body.
And since it's genetic, that means it's lifelong.
So we have to do a lot of just management and constantly checking to see if there's new tumors.
So, I mean, I feel pretty familiar with the inside of an MRI in a doctor's office.
Right?
Kimberly Yep.
Yep.
Annie All right.
And so here's the thing.
VHL affects 10 different organs.
And so I had to write them down because that is a lot.
Here we go.
Kimberly I don't think I can name them all. Okay.
Annie So brain tumors, spinal cord tumors, check, check.
Kimberly Yeah, just check, check.
Eye tumors, check.
Kimberly Check.
Annie Kidneys, check, which I have cysts, not tumors.
Kimberly Ah, I have had kidney cancer.
So yeah, if we, if we were, I don't know, what would this be?
Like a drink shots every time or I don't know if we'd make it through.
Annie Yeah.
Or it'd be a pretty funny podcast.
Kimberly Yeah.
It would get different real quick.
Annie Yeah.
All right.
So, so where are we?
Okay.
So we're at kidney, kidney cancer.
Um, we have the pancreas and the adrenal glands.
That's a bad one.
That's a renal start renal.
What is it?
Renal cell carcinoma.
Kimberly Renal cell carcinoma is the kidney tumors.
What you get on the adrenals, I believe is called a pheochromocytoma.
And that I don't have, I've never had that, but that, I mean, it's like flooding your body with those people who have that it like floods your body with.
What is it?
Cortisol or I mean, it just messes with the hormones bad.
Annie So, yeah.
And that can metastasize that one is cancer.
Some of these, I believe so, I'm not a, we are not doctors.
Kimberly We are not doctors.
No, don't ever get your medical advice from us. Annie Okay.
But listen, this is what Chad GVT told me.
Okay.
So blame it.
Kimberly oh, okay.
Annie So we're at seven.
Number seven is inner ear.
Kimberly Check, I had that.
Annie You take a shot.
Kimberly Yep.
Take a shot.
We got liver.
Kimberly I did not even know that was one.
Annie Yeah.
Well, something new to add to the list.
Kimberly Something.
Yeah.
I hope somebody's checking that.
Annie The lungs.
Kimberly Okay.
Annie That metastasizes quickly, apparently as well.
Kimberly Huh?
Wow.
Annie And then the reproductive organs.
Kimberly Right, right.
I did know about that.
Yeah.
So it's, it's very involved.
I call us tumor farms.
We just, yes.
We, we just grow them, grow them, grow them.
So tell me about your journey with VHL.
Cause I actually don't know if I know about this Annie, and I are for listeners are obviously friends, but so tell me, I actually don't know about your whole, your journey with VHL.
So tell us about that.
Annie Yeah.
So I was diagnosed with VHL when I was 12 years old.
So I went to the eye doctor because I wanted contact lenses, very concerned about my appearance, did not want to wear glasses at age 12.
Womp womp, right?
As I was, you know, with the technician doing these, you know, getting the contact lenses and learning how to put them in the eye doctor, pulled my mom aside and was like, I see something pretty bad in the back of her eye.
On her retina.
So, so quickly I'm talking within the span of two days.
I had had laser eye surgery.
I went into an MRI and had my brain scanned and my spinal cord scanned.
And they were, and then we got the results back immediately.
And eyes, brain and spine all had tumors.
Kimberly Oh my gosh.
Kimberly Now this is genetic.
.Do your, did your parents, do they have VHL?
Annie they do not.
So I am something called denovo and there's, there's a good number of us that are denovo and it just means we're the, we're the first in line, um, to have it, which, you know, I'm, I'm very grateful for that.
My parents, um, do not have it.
You're denovo right Kimberly?
Kimberly I am, I am. Right.
My parents don't have it either.
Yeah.
And there, there's an increasing number of us.
Uh, so, which is weird.
And I don't think anyone knows why that is exactly.
Annie Something's in the air.
Something's in the water.
Kimberly Yeah.
Some, something is somewhere definitely.
So, wow, that is, that must've been terrifying for your parents and you.
Annie Yeah.
I mean, talk about a bummer day, right?
Kimberly Indeed.
Annie Yeah.
And I went to NIH then still at the age of 12 and they formally diagnosed me with VHL, um, had to go through all of the tests, but they decided pretty much immediately that I needed brain surgery.
Kimberly Oh my God.
Annie And so, you know, I might've been 13.
Who knows, you know, that there was a birthday in between there.
Happy birthday to Me.
Kimberly Too young for brain surgery.
Annie Right?
Yeah.
So yeah, I'm, I'm early teen years having brain surgery at NIH with Dr. Oldfield, Kimberly, you know, Dr. Oldfield.
Kimberly I do. Dr. Oldfield is from Kentucky guys.
He is, uh, he has, he has passed away, but he was an awesome world renowned neurosurgeon and he was from Kentucky originally.
Annie And so lots of us know him.
Um, and he's, um, been our surgeon for brain tumors.
So we all have beautiful scars on the back of our heads from him.
Kimberly Yep.
We do.
He was great.
Annie And so I guess from there, it got less dramatic for, for a number of years.
And I have been, I mostly have been asymptomatic.
Fortunately, um, the brain tumors, spinal cord tumors really didn't have not caused too much problems, right?
The eyes, however, that's where I'm the tumor farm.
Absolutely.
Lots of tumors in my eyes.
And, you know, I think I was shielded.
I think my parents shielded me.
I think my doctors shielded me and the idea of losing my vision.
Like, I don't want to say it didn't cross my mind, but I don't think it really crossed my mind as a thing.
I was just excited to like get out of, um, school to go to the eye doctor all the time, you know, I mean, I'd rather be there cause it wasn't a painful thing necessarily, right?
Lots of laser surgeries, but you don't feel those.
I mean, and that's where, and that's where the resilience comes in.
Right?
Like we are resilient people because we have to be.
Right.
Kimberly Yeah.
Yeah.
Annie So yeah, I lost my vision when I was 24.
I mean, here's the thing.
I don't want to tell like a pity story, but I also want to say what's real.
Right?
Kimberly Yes.
Yes.
Annie So, because this has impacted me in a negative way, it has changed like my quality of life and what I expected for my future.
And I always wanted to be a lawyer.
I was living in Chicago at the time and I was studying for my LSAT, the, you know, uh, law school admission test and literally while I'm taking a practice test, I like looked down and all of my vision like went away.
And I was like, I lifted my head back up and it was cool.
And I was like, okay, I'm cool.
You know, you know how you just deny, but yes, so that's what happened.
And I, within a couple of days, I was like, this is not, this is not a good thing.
I cannot, I cannot deny this anymore.
And so I came back home.
Kimberly And home is where?
Annie It was my parents' house in Ohio.
So where I was raised in Ohio and had a barrage of eye surgeries, which, you know, did not work because the tumors were, were stronger.
Yeah.
Yeah.
Kimberly So was it like a retina detachment situation?
Is that what had happened?
Annie Yeah.
Yes.
And it was like a over and over and over retina detachment.
So I'd have like laser surgery after laser surgery.
And like I said, I thought no big deal, but each time you do that, of course it's going to deteriorate.
But again, I was shielded from a lot of that until it really hit me at 24 and I could not see anymore.
Kimberly Right.
And that is, that is how VHL I think works.
I think, what is it?
There are like a third of the people with VHL right now are blind or visually impaired.
Annie Really? that's a lot.
Kimberly It's a lot.
And just for my listeners, that's how Annie and I know each other is from a VHL Alliance, which I'll get to in a minute, support call for people with low and no vision.
So shout out to all our friends on the low and no vision call.
You know who you are.
And we love you everyone.
We love you so helpful.
And I think, I think that's, I think it's a very similar story that we all have is that the, the tumors, like you said, they're just stronger.
They, they attack over and over again.
And every time you have surgery, you have scar tissue and the retina is not a super forgiving thing, I guess it's, it's, it's, it's very, well, it's kind of delicate and you know, over and over and over again, it's just the retina detaches and it tears now, I believe nowadays there are, they have better techniques, I think for retina surgeries, but yeah,
Annie we're talking 90s with me.
So I hope so.
Kimberly And I, yeah, I heard it described though, one time as removing, retina surgery is like trying to remove a sticker from tissue paper.
It's a delicate thing.
So, yeah.
So dang, that's a lot.
Annie Yeah.
Kimberly And, and I know what you mean is you want to, there is no denying that it sucks, but also no one wants to be pitied.
Annie No, no,
Kimberly It's a delicate balance when you're telling people about this kind of thing, isn't it?
Annie It really is because it is such a, blindness is pervasive.
It's all encompassing.
It is not something that I can just take and put in my pocket.
At any point, right?
It's just, it's, it is something that really changes the way in which you navigate the world in every aspect.
That sounded pitiful.
Kimberly No, no, it's not.
It's like, and you, you know, we have, we have lots of blind listeners to the show and you know, they'll understand that it's you, you, you do your thing and you're just going through your life and you're just, you're just living your life and then you run into a door and damn it, there's blindness, you know?
Annie Yep.
Yep.
Sure is.
I mean, it's seriously like when we, when we all pass away, like I want them to study our dented skulls and just see all of the things we are running through.
Kimberly Yes, all the, shins and my brow bone and my head into everything.
I swear I told Michael, I want steel-toed socks.
You know, I want to wear socks, but I don't want to, you know, break toes anymore.
Annie So I got you there.
Yep.
Kimberly So we, we spoke a little about the VHL Alliance in the beginning.
So tell me about the VHL Alliance and what that is.
Annie Okay.
So the VHL Alliance is the overarching organization that helps people with VHL.
Um, so I actually have their mission statement and I'm going to read that.
It's short.
Kimberly You're so prepared.
You're so prepared.
Annie I want it to be a lawyer.
All right.
So the mission of the VHL Alliance is improving the quality of life and health outcomes for VHL patients, families, and caregivers with inclusive community building connections to excellent education and treatment options and advancements in medical research.
That's a lot, right?
So, yeah, I mean, what that I think comes down to is they are connecting with doctors and scientists to try and find treatments, trying to find cures.
And then they're also helping us folks with VHL navigate this, this disease, which, as we kind of talked about earlier, is something that we really, we have to scan MRIs, CT scans.
I mean, these happen every six months, sometimes every three months, you know, and just check our tumors constantly.
But the thing is, is that doctors don't know about this disease.
I'm generally telling my doctors, you know, like, hey, I need, I need an MRI scan here, write this out and write it like this, you know, which is like, which is a funny thing to do.
It's a, it's a power switch, but we have to advocate for ourselves for sure.
Yeah.
Kimberly The Alliance does everything from, I mean, they hold medical symposiums around the world for researchers to come together and share what they've learned to, to educate doctors and surgeons and things about VHL.
And I think they, they convene like a tumor board, you know, to say, okay, here's the situation we have.
A doctor can say, here's a situation I have with a patient.
I want to bring it before,all these other doctors to help figure out the best course of action, you know, the best treatment option.
So, I mean, that's amazing.
And then at the same time, they're holding support calls so that we can connect to each other and say, Hey, is this symptom weird?
You know, and so we can say, you know, I'm in Utah or whatever.
Where's the closest place that knows about VHL where I can get my care?
They're connecting us with people to answer those questions.
So I will put a link to VHL.org on the, on the show notes and anyone who wants to look it up, can look it up.
And I know they're holding a walk on May 17th and to raise money.
So I will not be walking.
I, walking is not a thing I do unless it's, you know, really, really necessary to get somewhere.
So just, just for funsies, it's not a thing I do.
Annie Yeah.
The able bodied people can walk.
Annie Right.
We, we, we appreciate them doing that for us, but we'll, me and you said, but again, not for us, not for us.
No, right.
We'll have a talkathon.
I think we, we talked about that.
Kimberly So, so law school sadly did not work out for you because, so you knew that, which is a shame because, uh, you would be great at it.
Annie Thank you.
Kimberly And now you are a yoga instructor.
You are many things.
One of the things you are as a yoga instructor.
This, I know because I am still sore from doing yoga with you yesterday.
Yeah.
Yep.
Yep.
Very sore, very appreciative, but sore.
So tell me what made you decide to become a yoga instructor?
Annie Well, I, I started practicing yoga because it's something where you're pretty much stationary on your, on your mat.
Right.
So I don't have to move around a room or interact with anyone else.
It is like an independent activity that you, that you can do with other people.
Right.
So, and the yoga mat has two short sides and two long sides.
And so that is, you know, I can be in that area, that small area and feel safe and feel like I can move and understand, um, you know, like where to place different parts of my body in, in alignment with that mat.
So it is a little bit, you know, harder.
It's a lot harder, um, than, you know, people who can just watch the teacher.
So yes, I was, I decided that because blind people and people with other disabilities don't really have access to classes that are suited for them.
And so I got my yoga certification and I, yeah, it's my, it's really my, my joy to, to help all of us that are marginalized in lots of different ways who can not walk into a yoga studio and automatically be accepted.
Kimberly And you do, do you do all of your classes over zoom?
Is that correct?
Annie Right now I am.
Kimberly You also do some in person sometimes, right?
Annie Yeah, yes, I do.
And I do, I also teach, you know, I have classes where everybody is able bodied as far as I know.
So it's not, it's one of those things that the blind teacher doesn't have to just teach blind students, right?
Right.
Right.
And like the class I did with you yesterday, I believe everyone there was doing chair yoga.
Kimberly Yes, I do chair yoga because I have, you know, balance problems.
Other people have, have other issues, but I mean, you do, uh, you do a meditation.
So there's relaxation and breathing, but then also, you know, the chair yoga.
So how do you, how do you make yoga accessible for people with all kinds of disabilities?
Annie I think the first thing is to connect with the people who are in your class.
I need to throw my ego in the garbage because this is not about me.
This is about them and them having the, everyone in the class having the opportunity to move in a way that works for them.
And so I, I first asked, you know, how may I support you?
How can I care for you?
What, you know, what do you, what would be helpful?
All of those things.
And then I try to incorporate all of that into a class.
Now I have a special certification in accessible yoga.
And what that is, is what most people would think of as traditional yoga, like on, on the mat, which is on the floor.
So I can teach that and chair yoga at the same time.
So we don't have to isolate those people who are in chair classes.
They can, they can be in any, any yoga class of mine, as can someone who's on a mat.
Um, so it gives more opportunity for people to participate and be a part of this.
Kimberly I didn't realize that was a special certificate.
Annie Yeah.
Most people don't think about accommodating people with disabilities.
Kimberly Word.
Annie Was that not obvious?
Kimberly True that, but yeah, I'm so glad you did.
And I guess it's your background as being someone who is blind that that was important to you too.
Annie Absolutely.
And I, and I went through trainings, um, with people who center disability, which is a hard thing to find.
And I'm going to just shout out Open Up Pittsburgh, um, because that's great work that they're doing to center disability.
And I think they are the, we're the first person people to, to give out certificates.
Kimberly Really?
Annie Uh-huh.
Kimberly And tell me, what is that organization again?
Open Up Pittsburgh.
Kimberly Pittsburgh.
And that's where you live right now.
Annie Yes.
Kimberly Okay.
And, and what is open up Pittsburgh?
Annie Um, they are an organization that does yoga and other movement for, for, for everyone, and they make sure that people feel welcomed and wanted and included in all of the things that they do.
They have what they call, um, instead of walking, like walking walkathons, they have a walk, roll and stroll athon.
Kimberly That's awesome.
Annie Yeah.
Yeah.
So, I mean, that alone just shows they, they think about the stuff and they care.
So shout out to them.
Kimberly When I was, before I had your, the class with you yesterday, you know, you texted me and asked a question and, and I believe my aunt, you texted me and my answer was something like, uh, you know, just do whatever and I'll adjust accordingly and your message back.
No, no, no, we do not just adjust accordingly.
This is not what we do.
Annie Not in this space.
You tell me what you need and it's, it will, it will happen to the best of my ability.
Kimberly And, and that, that was amazing.
And not, it's great for those of us who don't get that everywhere, you know?
Right.
Really great.
Kimberly Now, before you were a yoga instructor, you did some artistic work in television, which I was very excited about and immersive theater.
Can you tell me about your, tell me about your immersive theater experience?
Because that just sounded fascinating.
Annie Sure.
So I was cast in a production called Ojo : The Next Generation of Travel.
And Ojo, um, in Spanish means eyes or look or see.
And so really I, I talked about my blind experience with the people who are, you know, producing this production and, you know, they thought that really, if this was a great opportunity to bring awareness to disability and to actually have people for just a brief moment, um, experience it.
So there's many times throughout the immersive production where people are blindfolded and you have to move around.
And this is an hour long thing, right?
So you're in it, you get to be out of it.
You, of course you get to take your blindfold off and we do have them do that over and over again.
And one of the things when I say bye, you know, to them that I say, I'm like, okay, blindfolds back on, but I put them in the elevator and people go, Oh no.
And I'm like, Oh, it must be hard.
And then the elevator closes.
Sometimes I'm less mean, but yes, but just like something to that effect of like, you know, just recognition of, you know, disability is something that, you know, again, you cannot put it in your pocket.
So the, the thing that I loved about my role, especially is that I was able to tell my story and I started out in an area where there was a dance party.
And people would, our actors would come around and they'd put like drinks in your hand and like all sorts of things that you cannot really like reach to feel around yourself, you know, and then they're like, come on, let's dance.
And you're just, people are, they don't have any orientation, right?
They're just confused.
They don't know what's going on.
And I think that was a real experience of kind of like what it is like to be blind.
Does that make sense to you, Kimberly at all?
Kimberly When, when you say people, you mean just like, these aren't actors.
These are just normal, normal people who are here for the show, right?
Annie If you buy a ticket to our show, you're going to be blindfolded and put in a room with lots of music and our actors are going to make you dance with them.
So to be more clear.
Right.
Yes.
Kimberly And, and so, and did they know you were blind?
Annie No.
So, so at some point the, we, after the dance party, the lights come up and I'm standing in the, in the center of the room and I'm like, all right, let's go.
And I walk straight ahead of me and I walk straight out a door that someone opens for me on scene, and then I turn the corner, I go into an elevator and I do that sort of like, you know, come hither hand motion, right?
Um, and I'm kind of tracing the wall, but I'm not letting people see that I'm blind.
Right.
And then, you know, I say to someone, "floor three, please.â like all of these are natural sort of things that people do.
And so once I got up there, I would walk to my particular place in the room.
I would turn around and I would start to tell my story and people would be shocked that a blind person just led them like down corridors, elevator, all of these things, I led them.
And I think that's something that people don't think of that blind people can, can be leaders and they can learn from us.
And part of my, my scene too, was serving people drinks and people would say, can I help you with that?
And I'm like, no, I got it.
Thank you though.
Right.
So it really was empowering for me to just show people that it's, it's possible to live a life and a life with joy and a life with purpose while having a disability.
Right, right.
Kimberly Now, are you just like the world's best blind traveler or did you practice this a lot to learn the route and things?
Annie Oh yeah, there was definitely, um, they lined me up, you know, so I could just walk straight, there was little things that I had to do, like I would turn around a lot and walk, you know, up against the wall.
It was practiced over and over and over again.
So to look natural.
Right, right.
Kimberly But it, but it was, and you managed it and you got it.
Was it weird to walk around without a cane?
Did you feel like I'm going to, and you're a guide dog user.
So was it, did, did it seem weird to you?
Were you like, I don't know, discombobulated, I guess.
Annie Like once I got it, the opposite really, I felt so free.
Kimberly, uh, yeah.
Just to be able to like move in this space and be like, follow me.
I'm the one who's got this.
Like that just felt so great to me because there are not many times other than being in my house when I can move around independently.
Kimberly That does sound nice.
Did it all go to your head?
Annie No, so no ego in yoga.
Go and act it now.
Kimberly So the other acting that you did, you did some voice acting for a thing that I am, I was very excited by.
So tell, tell, tell everyone what I'm talking about.
Annie The television show, Daniel tiger's neighborhood.
Kimberly Yay.
Anybody with kids around and Daniel tiger's neighborhood from Mr. Rogers, Daniel tiger.
And then there was a spinoff and Daniel tiger's neighborhood.
I watched it all the time with my kids when they were little and they loved it.
And I still turn it on now because it soothes my dog.
It makes my dog a little less crazy.
We have just some PBS in the background.
So tell us, tell us what you did on Daniel tiger's neighborhood.
Annie Well, first of all, like the way that I even got the gig was from people who I worked with on Ojo , but just a side note, I do live in Pittsburgh and I live in the same neighborhood that are in the same neighborhood that Fred Rogers lived in.
So I literally live in Mr. Rogers neighborhood.
Kimberly That is amazing.
That is amazing.
Annie Right.
And so it was more than voice work.
It was, it was video as well.
And it was just this really fun experience where it was about the theme was help your neighbor.
And so, you know, a kid came over and was just kind of helping me, you know, said, may I take your grocery bag?
Do you want me to check your mail?
You know, those sort of things that are just, um, curtesies, but they're huge when you're disabled, right?
Kimberly Right.
Right.
Yes.
Annie So just teaching kids to be more kind and more understanding of people that may not look like them or move like them.
So that felt, that felt cool.
That felt important to me.
Kimberly Yes.
And do you remember the name of the episode?
Annie Yeah, it's looking for snowball.
Kimberly Looking for snowball and snowball is a kitty cat, right?
Annie I believe so.
Yep.
A kitty cat that some, one of the characters lost or got out of the house or something.
There's like an intermission kind of in, in between those stories.
And that's when my, my, you know, be a good neighbor part came in.
Kimberly So tell us how important the support organization, like the VHL Alliance that we've mentioned, how important has that organization been to you?
Annie Aside from the obvious of connecting you with me.
I mean, and I say this with all honesty, like that has been life changing, right?
To connect with a friend who can understand me in this way that no one else can.
Kimberly You're adorable.
It is, it is really a great group.
So, so tell me, tell me about, uh, about the Alliance and your experience with it.
Annie Sure.
So the Alliance, the VHL Alliance really helped me.
I had contacted them.
Oh gosh.
I mean, somewhere between five and 10 years ago, I was looking, I was just Googling something that I just had a question about with VHL and I saw that they had a like one-on-one coaching program.
And so that was very helpful to learn like tips and tricks of, you know, uh, how to navigate the system, but more so how to care for yourself, be kind to yourself when, you know, because this disease is hard.
Right.
Um, so that coaching, then she said to me, why don't you lead a yoga class?
And so, you know, it's like, it's like, you know, how, how sometimes when you make connections and you meet new people and then you make new connections and, and on and on and on, right.
And here I am doing your podcast.
But the thing that really the VHL Alliance helps me with was that, like I said, doctors do not know about VHL.
So I was using my PCP to write all of my, um, my scripts to get like MRIs and all the things, all the scans to make sure, you know, these tumors, see how much they're growing, um, if they're growing, if I have new ones, I was doing the wrong tests, I was completely doing the wrong tests.
Yeah.
Because I just kind of went off of what I always did in the 90s.
And well, things have changed.
Kimberly Things have changed.
Yes.
Yes, exactly.
Right
Annie And so they taught me, um, you know, actually you need to do this or that, or, and this is another test that you need to do.
And it really, like it, it gave me sort of the roadmap of how to navigate this disease in a way that is much more efficient.
And they have these things called CCCs, help me out here, Kimberly.
Kimberly Um, clinical care centers.
Annie Thank you.
I knew I'd forget that.
Okay.
So clinical care centers, which is like, which are places throughout the country, maybe the world, I don't know, um, where people know VHL and they can connect you to all the doctors and guess what?
Five minutes from my house was, it is a clinical care center.
So, I mean, my goodness, I did not know that I was getting all of my, I was getting my MRIs like in the same building, my incorrect MRIs in the same building.
And I just did, you know, I mean, not, not to hate on my PCP.
I mean, they just don't know, right?
Kimberly No, they just don't know.
They just don't know.
Annie Um, so yeah, so I, I now have a point person who writes all my scripts.
She did a bunch of her fellowships or, you know, uh, training, medical school training, she kind of focused on VHL and so she gets it and she knows what scripts to write and she, you know, changed my doctors and said, you need to see this person instead of that person.
Cause that's not quite exactly what you need.
And so, I mean, that was what it changed.
That was to have all these new doctors who again, don't know everything about VHL, but they know a heck of a lot more than most.
And so I feel much more supported in my, in this cycle that we go through, right?
Every few months.
Kimberly Yeah, yeah.
And the, the, the VHL Alliance, they, if they did nothing else, just pub, they, they publish in print and they publish it in audio format, uh, screening guidelines, which are, this is the test you should be having.
And this is how often.
And I call it the, how to stay alive with VHL manual.
Annie Yes.
So, and I think it's important for people.
We obviously have rare diseases, so we just, we just can't go to our doctor and get this information, but I think even for people who have diseases that aren't rare, I still think it's very, very important to reach out.
Kimberly I mean, most, most conditions or illnesses have some sort of support group and advocacy groups, something like that.
So I encourage everyone to try to look those up, see what they are.
Um, if you're having trouble, finding one, reach out to me.
I'll see what I can find out.
I have no ins to anything, but, um, you know, I'll get Annie and she'll do the chat to GBT cause she's apparently so, and we'll find what, what you need, uh, to the best that we can, but I think.
Getting the medical information that you get from those is important.
Also the community that you get from those organizations.
So important, obviously.
Annie Yes.
Uh, and it is a lonely thing to be disabled, right?
I don't have any other blind friends in Pittsburgh.
So while I can connect, I can't fully relate to the people.
In my immediate life.
So like having Kimberly and my other VHL blind friends is, I mean, what a, what a like life raft that is completely.
Kimberly Yeah, it, it absolutely is.
It has been a life changer for me.
Kimberly Also all of them on, on the call who I talked to, some are older than me, some are younger than me, but I have learned from every single one of them at all life stages.
So I would encourage everyone to reach out and find the organization that can help advocate for you and that you can learn from and meet other people.
And May is VHL awareness month.
So I have been talking today with Annie Lapidus, one of the best people in the wide world.
So thank you so much, Annie, for coming on the show.
This was fun.
Annie I'm so happy that I was able to do this with you and yeah, thank you so much.
Kimberly All right, gang.
See you next time.
Demand and disrupt is a production of the Advocato Press with generous support from the center for accessible living based in Louisville, Kentucky.
Our executive producers are me, Kimberly Parsley and Dave Mathis.
Our sound engineer is Michael Parsley.
Thanks to Chris Anken for the use of his song change.
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Thanks, everyone..