Episode from the podcastThe Ankylosing Spondylitis Podcast

Lisa Marie Basile - Author and Ankylosing Spondylitis Advocate

Released Sunday, 18th October 2020
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Jayson:
Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?
Lisa
Yes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about. 

Jayson:
Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?

Lisa:
Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young, 

Jayson:
You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.

Lisa:
Wow!

Jayson:
I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,

Lisa:
Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group chats, a lot of Facebook. Yeah, Facebook group use. And I remember in the very beginning, I was using it to, I was essentially driving myself crazy. I would ask about anything asked about any symptom, you know, read everyone's stories think they're going to be my own. It took a while for me to realize that it is very, very individual and that, you know, if someone is, you know, incredibly, incredibly ill, it's not necessarily reflect everyone else's past and likewise, if someone has an awesome journey, it's not going to reflect what everyone does look like and it changes every day. So I feel like right now I read the group you know, I can see when someone is just need a little bit of comfort. I try to add it in there, say something that say something supportive and take everything else with a grain of salt. People can say anything they want, they can this miracle drug, and this experimental setting or alternative therapy has cured me. And it's like, okay, you say that I don't need to take that into my brain. It's just a matter of building a wall this point because I was so gullible and influenced by everyone else's everything that I had to draw a wall. And now it's like I, you know, I post in these groups and I talk to people, but everything's with a grain of salt Now, even when I get advice from people in those groups, if the greater I have to do that, and I think everyone should do that, because you will throw yourself into a spiral thinking, Oh, my God, this is gonna be he or this drug is not gonna work, or this is gonna cure me. It's like, you can't go there and your mind.

Jayson:
Yes, I completely agree. I think that's probably one of the biggest things that when I see somebody new, come onto the forums, I try to really get into their brain that my journey is not your journey, I'll be happy to talk to you on your journey. But it it you might, you know, I see people that are 67 years old, they're doing yoga, they're doing great. And they have ankylosing spondylitis. And I see others like myself that have kind of fallen apart. And some of it is my own doing because I didn't understand what was going on. Some of it's just the way the disease struck me and, and we're all different. But we you have to like use it, you have to learn what to take and what to just kind of skip over and, and, you know, just kind of go from there.

Lisa:
Exactly. It's hard, because it's an emotional thing. But you have to like protect yourself.

Jayson:
And for everybody listening right now I'm going to have a link in the show notes to ankylosingspondylitis.net and it's going to have Lisa's page with all of her writings. So if you go right to that link, it'll direct you just directly to the writing. She's done on AS. But I don't want to focus on just that. You're a prolific writer, of poetry of short essays of all sorts of things, I'd love it if you would showcase for not only myself, but the listeners a little bit about some of the poetry you've written.

Lisa:
Oh, sure. So I was writing since I was a child, I studied writing and school, I got a master's degree in it, although I would not recommend going into debt for poetry. I, and I mean that I, my first love, it's my first language, I love that poetry can be so many different things. It can sound from poet to poet, it can encompass all the human condition and all the kind of like nuance and complexity of human condition. So I've written a few books of poetry, my last book of poetry is called Nympholepsy. It came out two years ago. And it's kind of an exploration of the kind of like, shedding of the old self and how we kind of grow into the new self. But yeah, I've, I've written poetry, I've read poetry all over the world at this point. And I'm back into it. Because Lately, I've been so focused on the nonfiction, so writing about s and other health stuff that I think I'm missing poetry and, again, so I have been writing a little bit about trauma, and also chronic illness and poetry. So I'm trying to see how I can talk about as the body and the trauma of the body and all the body kind of Thor's pain, and I'm trying to do something with that with poetry. It's hard because you're so beautiful. And this feeling is so ugly, but you know, I'm gonna, I'm gonna say I hope to do
it. 

Jayson:
Well, let me ask you, this could be a really dumb question. But again, I'm not a, I don't read poetry. Is there a niche? Is there a market for chronic illness poetry? Is that something or is that something you're creating?

Lisa:
Oh, no, no, there's there's definitely it's not a dumb question. And I would say that there's a lot of there's so many niches, I guess, the way of putting it, and there's certainly a lot of poets writing about chronic illness. I have a magazine called Luna Luna, that I run, and we publish pieces about chronic illness all the time, whether it's essays or poetry. And I mean, I just haven't really dabbled in it just yet. But certainly people have. And it's awesome. that runs the gamut of perspectives. 

Jayson:
What's interesting for the listeners, because you're not seeing what I'm looking at right now. But in the show notes, I'm going to have a link to Lisa's website in on this website. There's so much there that I haven't even scratched the surface of it. And it's broken down into topics, you know, the standard about and a diary. And I didn't even really look at the diary much. Is that something you update on a somewhat regular basis?

Lisa:
Yeah, that's pretty regular. Maybe every week, something, a few things go up and it's from all different people.

Jayson:
Okay, I follow you on Instagram. So I'm very familiar with the posts that you do there. But I really had never even thought to go to your website to look and see what you were posting there. It looks like some may be similar. Some may be different.

Lisa:
Yeah, exactly. So we try to publish a lot of people and voices But also, you know, I write for it myself too.

Jayson:
And with that writing, though, if there's somebody that's listening right now, and I guess it really wouldn't matter where they're at in the world, but if they're interested in poetry, reading poetry getting poetry published, that's something you maybe look for in Luna Luna, I'm not.

Lisa:
Absolutely, we generally have open submissions in the summertime. And then throughout the year, the editors, including myself, will just sort of open a short call for poach. So for example, about a week ago, I asked if people wanted to hand over poetry, about autism and poetry about chronic illness. Oh, actually, that will close and I'll do a call for something else. But yeah, we're always looking for new poets, and from around the world poets was marginalized back, put chronic illness like we would love it.

Jayson:
Now, is your poetry, as a woman, I'm guessing you mostly write from a woman's, you know, perspective point of view? Is it mostly on women's topics? Or is it kind of really generalized?

Lisa:
I would say that it got to feminine energy, but I don't think it's about women's experiences or topics necessarily I do. I write poetry is really about human experience. So even though it's filtered through the experience of being a woman, it's, I don't think it's, I don't know, I guess it's hard to talk about your own writing. But I would think it's got feminine edge, definitely more broad.

Jayson:
And Lisa, I'm going to read one of your poems here. It's a neat one. It's both of us are of Italian descent. So this is kind of a neat little way to, to look at your poetry, but I wanted to expose the listeners to some of your poetry, who might be like me kind of afraid and not know where to start with poetry. Maybe not have had even looked at poetry since high school. So this one is called 

Saint of Sea Change.
These days I am
blood-song
in this choir of ghosts
I have visions of ancestral cemetery, arabesque
and honey, tesserae of a thousand lives.

That we haven't all been so sick, so dead at sea,
in cathedrals, where we kneel to devils
because our hearts haven't been made whole.
I am so tired of the cycle
and so full of it. veined and spinal full of the cycle.

I could linger forever in this bloodwound,
that I would become patron saint of my own sorrows.
Praying at the altar of myself, I am the altar, and I am the prayer.
I see my reflection in this loop, my eyes and sepia belonging to a girl
who washes linen in the sea, who suckles limone and god.

I want to give my name a new day
& stand in our dark wound and touch it,
light it up by the fire of Etna. The zibbibo and pomelia,
children of children of children who made me
flooding the streets of heaven.

Have ever looked at the sea? It is full of the
drunk and the poor,
of names that get sliced by time and oppression.
It is so honest,

you cry into its open palms. It says you’re home.
I am opening wounds that have never seen the light

generations of clasped palms. I am speaking my name with the music of it. I translate a thousand waves cresting.

I am the poet. I am the line break.

Very interesting.

Lisa:
Thank you, I think you read that beautifully.

Jayson:
Well, thank you. When I read that, tell me what goes through your mind when you wrote something like this? Because it's both, you know, I can see this person, you know, on the shore doing these things, but it's also very dark in spots. Tell me what goes through when you write something like that poem? 

Lisa:
And for some of my recent poetry, I've been trying to explore the ancestral. So kind of dig in a little bit into my my family background, and in my family came from Sicily. They were poor, they didn't have much opportunity and like so many immigrants came over to the New York New Jersey area, just recently. So it was just my grandparents who were, you know, from Sicily and Calabria. And, you know, reading about Italian immigration and how Sicily differs from Italy and all those cultural differences. And I've just been thinking about how many people have been forgotten or cast away, or how much they struggled and how much they turned to God for hope, and maybe still struggled after that. So it just kind of wanted to write a poem that embraced all that beauty of the Italian culture, but also the suffer and hopelessness that some people may have felt and I know some of my family Yeah, I try to, in my poetry, I try to really create like a lush sense of emotion. So that's why it's so I guess dramatic.

Jayson:
It's just like, if you were painting a picture, you're not going to paint everything in one tone, you're going to use all the skills that you have to paint that picture. And that's what you're doing here is you're layering, you know, you're letting me see this lady by the ocean, but you're letting me see some of the trauma and some of the issues she's dealing with on a mental side. I don't know, I thought it was really good. And I'm, I'm not a poetry person. And I don't mean that in a bad way. It's not that I don't like poetry. I have no exposure to poetry.

Lisa:
No, that's very fair. Thank you so much. I love the idea of layers. That's beautiful.

Jayson:
And when I say prolific writers, I'm telling folks go to Lisa's website and click on the Read Me tab. The items that will come up there that you have written about in your short life are just amazing, the just the depth of it. Like I said, I've read a couple of things and peeked around at a couple of things. But really, as a neophyte of poetry, you kind of get where you know where to start. So I think it's really a well laid out website. And I would encourage anybody that has desire to write poetry has written poetry, to reach out to you, whether it be through Instagram, or GS, your website, you're all over Facebook, you're all over the place. It's easy to get in touch with you.

Lisa:
Yeah. I would love to hear from people.

Jayson:
Thank you. Now you live in New York City, correct?

Lisa:
Yes, I do. 

Jayson:
How is that as a city for a person with AS? How is it easy to get around? Is that a challenge? 

Lisa:
That's a great question, because I've been thinking a lot about accessibility. So I'm really lucky and I don't know if the word is lucky. I'm privileged right now, in that I am very mobile, I can walk on my own, I don't need any assistance, that although there are some days where the pain is too much, I know walking just doesn't feel great. And I can't do it for a long time, I have to give out many give out. So the city in general can be really tough navigate, I think with all the subway stairs, and I mean, you're going up and down, like 100 staircases everywhere of day, if you're going on the subway, there are elevator banks, but sometimes they're hard to find, to have to walk to them. So that's a whole different layer of issue. And then in terms of just the street, and let the rest of the city, a lot of places have some accessible entrances if you're using a wheelchair, but a lot. So really, it's like, on that just fundamental level, it can be kind of challenged sometimes. But just general, like New York City Life, when I was younger and had more energy and wasn't nearly like I am today, which is having fatigue all the time, New York playground, and it felt like this amazing thing where I could find all this opportunity. And now I've become a freelance writer. So I write in my house, so I'm not really taking part in that the, you know, sort of New York City lifestyle as much, nor do I really want to drag on my energy. So I think it definitely is a city that offers a lot, I can see good doctors here. There are a lot of doctors here. But then there are a lot of cool things here. Like I can go swimming if I want to because I'm in pain, and there's pools you can have access to. So just a lot here, but at the same time, not that I there's something to be said for having a similar pace of life when you're trying to manage a disease. And that's something I hope of in the future, I'll probably leave the sea. So it's a mixed mixed...

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Episode Details

Length
47m 35s
Explicit
No
Episode
72
Episode Type
Full

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