Before and After CVI: How life has changed for one determined woman

Transcript: 

Hello and welcome to Perkins eLearning To Go. Each week, our hope is to provide you with an inside look at special education topics, in particular, visual impairment. Through a series of interviews with leaders in the field and a fresh look at our webcast series, we know you will learn something new when you are on the go. Now it's time to sit back, relax, and let's hear what this week's podcast is all about.

Welcome to Perkins eLearning To Go. This is Valerie. On today's podcast, we have a really a interesting subject to talk about. It is about cortical visual impairment but from the perspective of someone who has cortical visual impairment but not their entire life. Ashley Purdy is a 20-year-old student here at Perkins. She had sight until she was 17 years old. And after a traumatic brain injury, she developed cortical visual impairment.

So she's in an interesting spot where she can remember what her vision was like. She knows what a plant looks like. She knows what a tree looks like. But she does experience what it is like to have a visual impairment now. So she came to talk with me about this. And as you will see, she is a typical 20-year-old. She is looking forward to her future. And she does answer some questions with us about how it is like to be someone with a visual impairment and what it looks like to her having cortical visual impairment.

Thank you, Ashley, for joining me today. I appreciate you taking some time.

You're welcome.

So I have a few questions for you. You're 20 years old?

Yeah.

And you attend Perkins?

Yes. Actually in the fall will be my last full year. I might stay on until March of 2021. But hopefully, if everything goes according to plan, I'll graduate in June of 2020.

Oh, interesting. So how did you come to Perkins?

So about three years ago, in 2016, I suffered from a brain injury that left me physically disabled and visually impaired. And so about a couple three or four months after that incident, I met up with Chris Underwood, Jen Potter, [? Atria Holdis, ?] I think. She used to be the head nurse. And they kind of interviewed me and said, you know, Perkins, and they told me a little bit about it. And I just said, well, how do I get in? They explained it. And so I submitted an application. And in the fall of 2020 or 2017, I started attending Perkins.

Do you like it here?

Yeah. So it's very different from public school, which I attended previously. They're a lot more able to accommodate my IEP better. And if like whatever I need help with since I am also doing some rehab for my physical limitations, they're able to coordinate that in my schedule as well as mobility, home and personal management, counseling, and stuff like that.

You're in really kind of a unique position where you had sight for most of your life.

Yeah.

It was just in the last couple of years where you've lost your vision. So can you describe to us what you see? What your vision is like?

So have you ever worn a veil?

Yes.

So as it's as if it's a very thick, very heavily thick blue veil. And sometimes that veil will turn blue. Sometimes-- or sorry, sometimes it'll turn red. Sometimes it turns black. Sometimes it's just a really bright white light. But it's between a veil and kind of like pixels. So I've heard people who see what I see as a kaleidoscope. So I think how I see it as pixels, they might interpret that as a kaleidoscope.

Oh, interesting.

So it's not always pixilated. But on a good, quote, "good vision day" when I'm seeing more things, it gets a little more pixilated and less of a veil. And then on a really, really good vision day, the veil will start to lift it feels like and there's no pixels and I'm able to see shadows more clearly.

So the veil, would it be like almost smoky? Does that make sense?

Yeah. It's hard to explain. Because it's not really smoky. It's just kind of like there. And it's just it's almost like wearing a sleep mask. And day by day, you get layers of the sleep mask taken off.

Oh, interesting.

More layers come off, but it's never enough to see what you want to see.

Oh, OK. Do you have-- is there anything special that happens where you have a good day or is it just, by chance, today's a good day?

So I mean, there's been times when I've been hanging out with friends and I'm in a really positive mood and I'm able to see things. And then there's other times when it's just an average day and nothing really out of the ordinary is happening, and I can see more things. And then on bad days when I'm like feeling some type of way like in a bad mood or down or something, that's when it's more harder to see things. So I definitely think mental health and mental peace of mind has something to do with it for me personally.

That's interesting. So since your vision loss, what would you say has been your biggest challenge?

So at first, I didn't-- when I was in a coma for about a week and a half to two weeks, and when I woke up, I couldn't talk, couldn't walk, couldn't move on my own. And I didn't really understand what was happening. And then for everyone to tell me, you're blind. You're blind. I'm like, what are you talking about? I can see you standing right in front of me.

And so it was really a shock at first. And then once like as I came out of the coma and started getting more aware of what was going on around me, I started to pick up little things that kind of led me to the conclusion I am blind. And with that, the more able I was to do more independently, the more harder I realized how living with blindness is.

But being at Perkins has really helped me adapt. We have a lot of different adaptations for me personally, whether it's putting a label on my t-shirts, doing shoes with the laces you'll only tie once and then always slip them on, whatever the case is. Perkins has really helped me adapt to being blind. And I don't think I would have made it if I didn't come to Perkins, to be honest. So what was the question again? I forgot.

What is your biggest challenge or has been your biggest challenge?

Honestly, probably the biggest challenge is just accepting that I'm blind and knowing this is going to be something I deal with for the rest of my life. And I can't let it define who I am as a person. It's just something I happen to live with. It's not who I am.

That's a good attitude to have. You've come so far if you were in a coma and having to relearn to walk and talk and everything that you are doing. You've gone through a lot.

Yeah, I actually had a G tube for a little bit. And so sometimes, I still need physical assistance with like daily things like getting dressed, taking a shower, eating a meal, you know stuff like that. So sometimes when I'm getting dressed and there's a new staff, they'll say, what is that scar on your stomach? And I go, that's from my G tube. And staff that have worked with me for months that have never noticed it will kind of like, was that a G tube? And I'll just say, yeah, you didn't know? How have we never had this conversation? You know? So yeah.

What have you found most helpful here at Perkins or in general that you've found to be helpful for you?

Perkins is able to help with my multiple disabilities. But they also give me opportunities that I never thought I would have like going to college, getting a job. So that is really helpful because it's giving me real life experience that, in a public school, I might not have or might not be able to get because they might think, well, you're blind. How are you going to do it anyways? You know?

Right. So I noticed that you have some tattoos.

Yeah.

And can you tell me about your tattoos? And do you think you're going to get more tattoos?

I'm definitely going to get more. But currently, I have five. I have one on the back of my neck. It's Roman numerals November. In Roman numerals, it's 11/1/16. It was the day of the incident. And that just lets me know like I have a fresh start. It's my new beginning. And I need to make the most of this new life.

And then I have one on my lower right bicep, and that's for suicide prevention. It says JSS, which stands for just survive somehow, a semicolon for suicide prevention. And then it says underneath the semicolon, choose to keep going. And that just lets me know that, yeah, I've been through it but I survived and anyone else dealing with it can too, because a lot of people don't talk about mental health because it's a big no-no topic. But it's the people that don't talk about it that suffer the most. You know? That's my experience with it.

And then I have one on my lower right forearm that's a compass rose. And around it, it says, home is where the heart is. And that just reminds me every day like I don't have my place. But one day, I will. You know? And then I have one on my lower left bicep, and that's a tattoo for my grandmother who passed February of 2018. So I have that.

And then on my left forearm, on the outside between the elbow and the wrist, I have, stop looking for light, live it instead. And that's song lyrics to a song I like. It's "Little Girl" by Faith Marie. And that's very similar to the compass rose. It just kind of symbolizes there is light. You know? You just need to live your life. And one day, the light will find you. That's the way I interpret it. Everyone else has their own interpretation. But stop waiting for light, live it instead. I just interpret it as why go looking for something when it will find you when it's your time?

So all your tattoo have some real personal meaning?

Yeah. I would never get like my boyfriend's name, for instance. Yeah. I've explained this in depth for why I would never get a said person's name. Because if it's like a boyfriend or whatever the case is, you know, anything can happen. You can break up. You can stop talking. And then you're going to be like, why I did tattoo this on my body?

Exactly.

Exactly. So I'd only get like family or like my kids when I have them. I'd get like their names or something or their handprints, something that I can always have with me even when that person isn't.

You're incredibly smart to do that.

I mean, because a lot of people get a tattoo. Like I have this friend, and she got a tattoo of a Hershey's kiss. And I was like, why? She goes, because my boyfriend at the time loves them. So I got a tattoo. I'm like, so how long have you guys not been together? She goes, 10 years. I go, and you're stuck with that for the rest of your life. So have fun explaining that when you have kids. Mommy, why do you have a Hershey kiss? Well, you see--

So what's the future for you? What do you want to do?

Are we talking about like five years from now or like 10 years or is just like the future at a whole?

Just the future as a whole. Like what is your plan after you get out of Perkins?

So actually, it's a hot topic of conversation. I'm engaged to be married.

Are you really?

Yeah.

Congratulations.

Thank you. So that will hopefully. It's definitely going to happen once I graduate Perkins. Me and my fiancee have already talked about we both want to be out of Perkins before we officially get married. But that might be altered depending on living spaces and all that for when I graduate in June.

But once I graduate officially from Perkins and I'm done, I'm planning to go to Mass Bay for a college, do a two year program, get a associate's I think it is.

Yeah.

And then I'll be able to start work. And then do the rest my time at UMass Boston for my master's in school psychology. And then hopefully, I can come back to Perkins and work here because it's just a really great environment. And I feel like if I came back to work, they would be able to help me with accommodations that not many places are able or willing to give me. So that more or less minus having a family and getting that all started.

Small detail.

Yeah. I mean, that's just a small detail in the bigger picture, you know? But yeah. I do hopefully get married sooner rather than later, have a family. But career wise, graduate, go to college, graduate from college, get a job, make a career out of it. Because I don't want to have a job. A job is something you get up and go do because you need money. A career is something you love to do. And I'm looking for my career.

It sounds like you could use your own experience. You certainly could help a lot of kids.

Exactly.

Be an inspiration to them.

Yeah. We're trying to get me up and running with talking to local high schools and middle schools and talking to adults not too much older but like young, not too young, kind of like young to mid adults, I guess, just to get my story out there. And hopefully, it will empower them or save the next person so they don't go down the same path I did. I can say, this is what I went through to get to where I am today. But you can skip these steps and just make your life better.

Nice. And you said your fiancee is here as well?

He actually graduated in June.

Oh, really?

But he's staying on until his birthday.

Nice. Oh, that's exciting.

Yeah.

Well, I wish you all the best. And I thank you very, very much for coming down and talking with me.

No problem.

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