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This September, the National Aphasia Association brought on a new executive director. Maura Silverman, MS, CCC/SLP, founded the Triangle Aphasia Project. She brings 34 years of expertise to the organization.

She recently sat down with board member Angie Cauthorn, co-founder and president of the ARCH Network (Aphasia Resource Collaboration Hub), who acquired aphasia seven years ago following two strokes. You can also catch Cauthorn on the Brain Friends podcast.

You can watch their interview below, or read the transcript under the video.

 

 

Transcript

Angie

Well, hello, Maura Silverman, what’s going on? How are you?

Maura

Hey, Angie, nice to see you. I’m very well, I hope you are…

Angie

I’m doing fine, blessed and highly favored, blessed and highly favored. We are the new kids on the block at the NAA. I’m a new board member. And I’m very proud and thankful that they have entrusted me to be, kind of, one of the voices of people — of a person with aphasia to be on the board. And you are our new executive director. So, I wanted to come talk to you, learn a little bit about you, and see if I can get an inside track. Getting in good with the executive director.

Maura

Well, we’re so honored to have you on the board. And you know, I’m the new kid on the block. But I’ve actually been involved in the NAA since I started in the field. So that, let’s say if the NAA is 35 years old, and I have had 34 years of experience.

Angie

All right, we’re carrying the one. We’re carrying the one now, right? We’re carrying the one, and then time goes by so fast.

Maura

Yeah, it does.

Angie

I was listening to the news the other day, and they were — they had solved Tupac’s case. And they said, well, three decades, and I’m like, what?

Maura

You listening to the radio, and you’re playing old-time music or the oldies, and you realize that’s what you grew up with?

Angie

Yeah, I’m like, New Edition is on Soul Time. What? Why is New Edition being played on Soul Time? Exactly. Exactly.

So, with the work that you did before the NAA, what were you? I know you had like a nonprofit or something. But tell me about that. And what made you want to come over to the NAA? To take this leap.

Maura

Well, it was a leap. It was indeed, and I feel very excited and honored to have been chosen for this position. But I have been intertwined and weaved into the aphasia world for years. Number one, as a provider, as I just mentioned, I’m a speech-language pathologist. I’m also a fierce advocate. I believe very strongly in communicative access for all, and I was a care partner. My mom had a stroke in 2009, long after I had started the Triangle Aphasia Project in North Carolina. So I got to see all sides of it, and starting a nonprofit organization 20 years ago was really part of the education. Being a speech pathologist for 34 years was part of the education. But I really credit the insights and lessons, the lived experiences of people with aphasia, for teaching me how to communicate with people with aphasia, how to recognize needs, and then experiencing my mom’s aphasia journey, her friendships that changed, her challenges throughout the healthcare system. You know, I’ve been mentored by some amazing colleagues, but it’s you — people with aphasia — that allowed me to have enough skill set to bring to the NAA.

Angie

So, let me ask you this in regards to when your mom and you’re watching your mom kind of go through her journey. What did you find to be the most — I don’t wanna say frustrating, but the most challenging in that environment, watching your mom, and yet you already know everything about aphasia because you are an SLP. You have been doing it. So it’s kind of almost like a Stroke of Insight, but on the other side, where you got to live it and see it. How was that?

Maura

Yeah, you know, thank you for asking that. So many people said, you know, you must have started the Triangle Aphasia Project or been involved in nonprofit work with aphasia because of your mom. Well, remember, I had started that years before. So, when my mom had her stroke, and I recognized all of the impacts on her life, on our life as a family. You know, when your mother has a stroke, she’s your guide. You know, she’s your light and teaches you, and she had a very prophetic voice and was an extremely talented writer and nurse. And what frustrated me most was people not allowing her to use her voice. We’d go to doctor’s appointments, and they would turn to me and say how is she doing?

Angie

Yeah, yeah.

Maura

She’s right here. Right?

Angie

She can, yeah, she can respond. She totally can hear you. And that’s one of the things.

Maura

Family that would talk and jump in and give her the answers.

Angie

And it’s never the right answer. Because if it’s the right answer, I’m actually okay with it. But when it’s wrong, when you’re way off, it’s like we’re not even in the same like area.

Maura

Yeah, I think it’s that. It’s what. It’s not even just the words. It’s the cognitive competence that people don’t realize is behind the language challenges. And if someone can’t see somebody’s intellect and their lived experiences because of a communication challenge, and then not even allow them access to use it. It just fueled my passion and right. It’s interesting. I’m gonna give you a lot of credit here, Angie, and Dr. Celeste Gadson and your podcast Brain Friends, which I love.

Angie

Shameless plug, shameless plug.

Maura

I was listening the other day, and you were asked, she was asking you a question about “to be alive is to,” and it’s one of the older podcasts, but she said her “to be alive” was to walk — I wrote it down so I didn’t mess it up — “Walk in your purpose and passion.” And I was like, yes, yes, that’s what I do. And that’s how I feel about my work with aphasia. So imagine being able to now work at a national level, to share those experiences.

Angie

That is awesome. And you know, my mom had five strokes as well. Or four, you know, in her lifetime, and people don’t know what they don’t know about communication, and I say this all the time: people do not judge you by what you know. You are judged by what you can prove you know. And when you can’t prove it because you can’t communicate, people tend to dis. You know, it’s definitely something else. But let me ask you this, back to the current climate, and what’s going on at the NAA. I find the NAA to have been like a sleeping giant that’s been awakened, like it was…

Maura

Wow, what a great, what a great analogy. We’re the analogy queens. Awesome. Awesome.

Angie

So now that it’s been awakened, and obviously, you’re in charge of the coffee and all the stimulants. What are you going to bring to the table that’s going to keep it alive, keep the energy going? So people with aphasia can find a light. There are a lot of smaller groups that are kind of shot off, that are new, but they were needed because of things, of holes. They were trying to fill holes in their community. But now the NAA is reasserting itself after COVID. And being online and being brick-and-mortar and now coming back around, what do you feel as though you’re going to bring to the table to help us reach those next levels?

Maura

Oh, I really love that question. And mainly because you talk about all of the timeline, you know, that the NA has gone through. And the idea that back in 2014, they made a really hard decision to close down the brick-and-mortar. But you know, what kept all of this stuff alive is people who cared. It’s a community. I’m not at a table by myself. I’m at a table with individuals with lived experience of aphasia, whether they be persons with aphasia, care partners, families, or friends of people with aphasia, which is huge. And that the board of directors, and the contractors, and all the people that volunteer, I have never seen a more dedicated, group of people that said, we are not going to let this go anywhere. Darlene Williamson, who, you know, one of my mentors, friends, former colleagues, you know, is highly responsible for keeping all of this together.

Yeah, I mean, the NAA has not had an executive director. It’s just that everybody pitched in to do what they can, and so this, you know, awakening of the giant, all of a sudden, I feel very large, large and in charge, is, you know that, that they answered the call. And you mentioned these other, you know, programs that were looking for something and couldn’t find it.

Angie

Like Arch, like Arch. Yeah.

Maura

And you and I had a great discussion the other day about a tree. And how a tree is just steady. You know, even when the wind blows, there might be some branches that break off or leaves that fall. But the trunk stays really intact. And then there’s these limbs, and these limbs were there to help beautify the entire, you know, tree and the whole — all the services. And I really think that we need to reach out, collaborate more, and make it a situation where people who are serving people with aphasia feel supported by the NAA and have access to the other programs as well.

And so I really feel like that it’s the incredible work of the people that are sitting at the table with me. These past two weeks since I started, I have been having these touchpoint meetings where I talked to stakeholders, and I’m not done yet. So, if you’re out there, be ready for my call.

We’re ready, and we there were obvious needs, but we are listening. We’re finding out what’s still needed and where the holes are. And we’re supporting the other organizations that are out there doing this important work.

It is, I think that when you have something that is there; community outreach is so important. What are the projects that you’re most excited about working on? Now that you’ve come out of your own nonprofit? Everything that you’ve learned from that, everything that you learned with the situation with your mother? And that personal effect that you have? What are the things that you’re most excited about to be bringing on board with the NAA?

Maura

I think this is the first step is the faces of the NAA. The people…

Angie

I thought you were talking to me, but I was like…

Maura

I am. I am talking to you. You know, they’re that personal touch, that authenticity, bringing in, you know, putting a human touch to an organization that is almost bigger than life. Right, that has been around for so long. I think to answer your question, I would really focus back on the mission. The mission started, you know, way back in 1987 by Dr. Martha Taylor Sarno, and her vision remains the same. You know, I had a lovely opportunity to talk to her when I accepted the position. And we talked about how it’s really important to be mission-driven and to look at what pillars does the NAA have that people donate to support, that people engage as volunteers.

And those are education, providing education, providing resources to make things easier for people. So there is a way for people to get information, and supporting research, and, you know, this, that’s kind of an awesome status to be able to provide those three things in, in this dream team environment that we have.

Angie

Yeah, yeah, I think it’s so important, especially the research and the community because when you can’t communicate, you reach out to the national… You want something that says, “Listen, there is a path forward.” And that’s, I think, is what I would like to see from the NAA is it being the path forward, like the first step, not the last step, but the first step that people take, and then you know, you, you kind of find your way through because aphasia is hard. It is hard. And I’m — I was, you know, I did a lot of work to get my, a lot of my conversation back. And it’s, you know, it’s still a struggle. But I think the things that we do can help people. I think we can make the difference if we put ourselves and just wake up the giant. So I’m so glad that you’re here and that you’re going to be making these moves, and I feel like it’s going to be great. I do have one more question for you.

Maura

Can I add one piece to one of the things you just said because it was so important, and I don’t want it to get lost.

Angie

What is that?

Maura

You’re talking about a communication challenge that so many people don’t know about. So, one of the things that we’ve talked about before is how the NAA has done amazing work on bringing awareness and continue to find ways to bring awareness. But it’s more than knowing what it is. It’s also important for us to share what it’s not. That it doesn’t have to stop you. That it’s that path.

Angie

That part and that part.

Maura

Yeah. Right? And I think that one of the things that we can do, based on the voices that I’m hearing of people with aphasia, is to not just tell people what aphasia is and what it is not, but also the impact it has on people’s lives. And I really feel like the focus can be a lot on the impact. And so I really, I love and appreciate how you put that question and how you responded to it.

Angie

Yeah, it’s so important. I think we, we need a hero. [Sings] “We need a hero.” We need a spokesperson.

Maura

I didn’t know we had to sing in this interview.

Angie

Exactly. I think what Michael J. Fox did for Parkinson’s. You know, we have Bruce Willis, but that’s PPA, which is different than getting it from a stroke or whatever or traumatic brain injury.

But we need someone who can speak to the public and say, you know, when you say you have Parkinson’s, people know how to respond. You say you have aphasia, and they want to know if you’re contagious. They’ve never heard of it.

Maura

Right, right.

Angie

And it’s hard. It’s hard enough that you can’t speak, but then you can’t even tell a person what it is that’s in — it’s like a vicious cycle. And what I want to say is literally always on the tip of my tongue. I know what I want to say. It’s just blockages that stop me from saying it. So I have to kind of go around it, which is exhausting.

Maura

I can’t imagine, but those descriptions, those zingers, as one of our board members just talked to me about, are the things that will be relatable to people. And people will have that kind of feeling of like, “Oh, I understand what you mean.” Like, you get to — you had a great analogy about how you get to the grandma’s house, and you’re sitting out front, and you’re like, wait, it’s not here. But I know it’s here. It was such a great one. So yeah, I’m sorry.

Angie

That’s episode six, season one.

Maura

You’re gonna ask me another question.

Angie

I am going to ask you one more question before we get out of here. Um, for those who aren’t, I do know. I think, actually, I think I’m good. I think you actually answered my question in your last question. I was going to ask, you know, within you fitting into the organization, what do you — I know what you hope to bring. But what are your first things that you’re going to tackle? Other than your touchpoints, and you’re talking to people? What is — What’s the thing that you can’t wait to get started on?

Maura

I love that. I love that. Because there’s so many great things going on right now. And it’s hard not to dive into each of them. The PPA Task Force has been doing amazing work. We’re in the middle of a—

Angie

What does that stand for?

Maura

The Primary Progressive Aphasia Task Force has been — has all kinds of resources that they’re building to go on our, wait for it, the new website, which has been certainly a big improvement to being able to allow people access. We’re doing funding for the second round of researchers, who are doing really important aphasia research that aligned with our mission.

You know, I think what’s most difficult is kind of holding me back a little bit. And you know, you want to get started so badly, but knowing that we’re in a new era here and that the NAA now has an executive director, one of the first things that we need to do is really structure and build this infrastructure.

I made an analogy to Darlene the other day that when you walk into a new house — my husband and I are having a townhouse built. When we walked in, it’s this great foundation. It’s a pre-drywall meeting. So great foundation and you can see the view and all these contractors had been in with their talents and, you know, cool things in the electricity and the plumbing. But I can’t move a couch in yet. And I can’t hang a picture yet. I can’t paint the walls that aren’t there.

So, with the help of the board of directors and all these volunteers, I’m hoping that we really build this structure that it remains, the legacy it is, is sustainable for years and years to come. And that, you know, when this face is replaced by a prettier one, that will be, you know, it’ll keep going. So I’m really excited. And I get to keep collaborating with awesome people like yourself.

Angie

Well, I will say this: let’s just make sure that we mention to people that we are always looking for volunteers, volunteers are welcome, or people with aphasia — reach out. We are here for you. There is a waiting, wanting community wanting to be there for you. So just know that, and you’re not alone in this journey. And I think it’s just phenomenal. And I’m so glad that you have come on board and elected me as a board member, and I’m going to do all I can as a person with aphasia, to do what I can, and to make sure that—

Maura

There’s no one I’d rather walk the journey with. I’m glad that we came in at the same time.

Angie

It’s our time to shine, girl. It’s our time to shine.

Maura

All right. Thank you.

Angie

Thank you. All right. Take care.

Maura

Have a great day.

Angie

Brain friends!