023 Personal Perspectives on Vision Loss with Nik Kirkpatrick
Today's guest is Nik Kirkpatrick — a forty-year-old living with Stargardt's disease, a condition he was diagnosed with at seventeen. Nik found inSight Out through the Stargardt's subreddit, where he regularly supports others who are newly diagnosed. In this conversation, he offers a raw, honest, and at times darkly funny account of what it has taken to build a life he genuinely wouldn't change. This one is for anyone who has ever felt like they were falling behind — and needed to hear that the detours sometimes lead somewhere worth going.
Letting the Universe Come to You
There is a particular kind of conversation I find myself returning to in my work as a psychotherapist — the kind where a person says something they've clearly been carrying for a long time, something they've almost stopped noticing because it's become so much a part of how they move through the world. And then they say it out loud, and for a moment, the room gets quiet.
Nik Kirkpatrick gave me several of those moments in Episode 023 of inSight Out.
Nick is forty years old and has lived with Stargardt's disease since he was diagnosed at seventeen. He found the podcast the way many in our community find each other — through the Stargardt's subreddit, where he regularly shows up for people who are newly diagnosed and terrified. He came on the show not as an expert in vision rehabilitation or technology or medicine, but as someone who has simply lived it. Longer than most. More honestly than most.
What He Was Told — And What Was Left Out
Nick's diagnosis didn't come with a roadmap. His neuro-ophthalmologist told him that his vision would deteriorate over five to ten years. He was around 20/70 at the time. What the doctor didn't say — or what Nik didn't hear, or what simply wasn't fully understood — was that the timeline and endpoint were far less certain than that framing suggested.
I know this particular experience well. I have Stargardt's disease too. And the way our prognoses are communicated, or miscommunicated, shapes years of decision-making. For Nik, it shaped his relationship to planning, to school, to work, to hope.
He told me he spent most of college and his twenties essentially pretending the diagnosis wasn't real — avoiding accommodations, dropping classes he couldn't follow, staying in work environments that were familiar even when they weren't safe. Not because he was in denial, exactly. But because the information he'd been given hadn't given him a coherent picture to respond to. When you don't know what you're adapting to, it's very hard to adapt.
This is something I see often in the adjustment process: people aren't failing to cope. They're coping with the wrong information. Grief requires an accurate object.
The Long Road Into Therapy
Nick's history with therapy is, to put it charitably, a series of near-misses. His first experience ended after a few sessions when the billing fell through and his therapist sent a passive-aggressive email. His second was with someone who ended the relationship after a single session for unrelated reasons. His third was with a newer therapist who, though well-intentioned, wasn't quite the right fit — and who eventually stopped reaching out.
He found his current therapist about three years ago. And by that point, he told me, most of the work wasn't directly about his vision. He'd done a lot of that processing on his own, over time. What remained was the other stuff — the relational patterns, the financial stress, the accumulated weight of years spent navigating a world that wasn't designed with him in mind.
I want to be careful here not to overstate the lesson, because Nik told his story with characteristic plainness and I don't want to impose more meaning than he intended. But I did notice something. The years of not-quite-right therapy weren't wasted time. They were part of a longer process of discernment — Nik learning, slowly, what he actually needed, and what kind of support felt real versus what felt performative. That's not nothing.
The Invisible Grief in Ordinary Moments
One of the most precise descriptions of vision-related psychological pain that I've heard in a long time came in the form of a story about a music festival.
Nik was out with his wife and a friend. They went to a restaurant. The bill came. Nik didn't reach for his debit card — not because he was avoiding it, but because that's just not how he navigates restaurant situations. And somewhere in that moment, their friend internalized something: that Nik wasn't a full participant in the financial and logistical life of the outing.
Earlier in the day, she had remarked that dividing by three was hard. Nick, who is by his own accounting good at math, was quietly mortified.
He brought the whole weekend to a therapy session. And he told me something that I found clinically precise: he wasn't spending that session talking about how he can't see. He was spending it talking about how, because he can't see, he was having a negative interaction with someone about a totally unrelated issue.
That is how vision loss actually works in a life. It doesn't stay in its lane. It bleeds into the restaurant check, the job interview, the sidewalk, the dinner conversation — not because vision loss is the problem in all those contexts, but because it changes the margins. It removes options. And when options are removed, even small social moments can carry weight they weren't designed to carry.
The Foundation That Predated the Diagnosis
Here is the thing about Nik that I kept coming back to throughout our conversation: he has always known who he is.
He described it as being "cool" — meaning not swagger, but groundedness. A sense of his own worth that didn't depend on external validation. He traced it back to his upbringing, to watching his parents make decisions he didn't want to replicate, to deciding early that emotional reactivity and avoidance led somewhere he didn't want to go.
That foundation — that preexisting sense of self — has been his most durable resource. It's why, when people treat him as though his vision loss makes him less capable or less relevant, he doesn't internalize it. It says more about them, he told me. And he doesn't have time for those people.
In my clinical work, this is one of the most important threads I try to locate with clients who are adjusting to vision loss: what do you know about yourself that this diagnosis cannot touch? Because there is always something. And the work, in part, is about reconnecting with it — not denying the loss, but refusing to let the loss be the whole story.
Nik came in already holding that. Not everyone does. And his candor about the economic consequences — the Social Security income, the hourly work, the very direct message to young people newly diagnosed to get educated — reflects the other side of that groundedness. Knowing who you are doesn't insulate you from structural disadvantage. But it does give you a place to stand.
What He Said at the End
As we wrapped up, I asked Nik if he could summarize what he'd learned. He said everything happens for a reason — and then immediately complicated that cliché in the best way. If he had done everything right when he was young, he never would have met his wife. He wouldn't live where he lives. He wouldn't have the dog.
He said: if you make the mistake, own it. If you do the right thing, be grateful — and give back. Because someone is behind you dealing with the same fear you had, and they need the support.
Then he said something I've been thinking about since:
Let the universe come to you.
And when I repeated it back and added: and accept it when it does — he said yes. And we left it there.
I don't know that I have a cleaner ending than that. Nik Kirkpatrick is not a polished public speaker. He's not a motivational voice. He's someone who has lived something hard, paid attention to it, and found a way to make it mean something. That's the whole job, really. For all of us.
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In Episode 023 of inSight Out, host Matthew Reeves — a legally blind psychotherapist — sits down with Nik Kirkpatrick, a forty-year-old with Stargardt's disease who found the podcast through the Stargardt's subreddit. Nik offers one of the most candid and grounded personal perspectives the show has featured: no silver linings forced too soon, no tidy arc — just the real, uneven, sometimes funny experience of building a life around a diagnosis that shaped everything without defining him.
Nick was seventeen when he was diagnosed, but the years that followed were marked more by avoidance than acceptance. He didn't disclose at college, dropped out of classes he couldn't follow, and spent years in the restaurant industry — work that felt accessible but came with genuine physical risk. Economic hardship, social misunderstandings, and a misconception about his prognosis compounded an already difficult journey. He was in his thirties before he connected with a therapist who could actually help.
What makes this conversation stand out is the specificity. Nik talks about the cognitive work of navigating a restaurant floor using peripheral vision and basketball footwork. He describes the quiet indignity of a friend assuming he couldn't split a bill. He reflects on advising his newly diagnosed mother-in-law — 20/40 vision — that his vision was worse at seventeen than hers is now, and that he still carries trays of glasses across a restaurant floor without falling. He plays chess at the 65th percentile on chess.com by memorizing the half of the board he can't see.
Matthew and Nik also dig into the deeper psychological terrain: how vision loss intersects with identity, the danger of conflating what you can do with who you are, and why the most durable coping resource Nik found was a sense of self he'd built before the diagnosis — one rooted not in achievement, but in accountability.
Topics covered: Stargardt's disease personal experience, vision loss and identity, adjusting to progressive vision loss, low vision in the workplace, navigating restaurants with low vision, peripheral vision adaptation strategies, vision loss and mental health, therapy for disability adjustment, Stargardt's subreddit community, low vision and employment challenges, economic impact of vision loss, SSDI and blindness, disclosure of visual impairment at work, vision loss grief and acceptance, macular degeneration family support, living well with low vision, quality of life with vision impairment, play to your strengths disability advice
Contact Nik at nikkirkpatrick@gmail.com.
ABOUT THE PODCAST
inSight Out is your podcast home for living well with vision loss. Host Matthew Reeves (LPC CRC NCC) is a legally-blind psychotherapist and rehabilitation counselor specializing in helping people thrive while living with disability. Matthew is licensed in Georgia and is a nationally certified rehabilitation counselor.
Please be sure to subscribe to catch every episode. And remember to share the show with others in the blind and low-vision community!
CONNECT WITH US
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©Integral Mental Health Services, LLC
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The following transcript is AI generated and likely contains errors.
023 Personal Perspectives on Vision Loss with Nik Kirkpatrick
COLD OPEN
Nik Kirkpatrick: [00:00:00] generally speaking, when someone is nasty or someone is not accepting or understanding, it says more about them than it does about you. And I don't have time for those people. So my world can be small. That's fine. If they have a problem, they can go away.
INTRO
Matthew Reeves: You're listening to Insight Out a podcast about living well with low vision. Maybe you're feeling confused, scared, isolated, or disheartened about a recent vision loss diagnosis, or maybe you've been managing your vision loss for a while and now you want to hear from others about how to continue growing and thriving. Insight Out is your supportive space to find healthy and impactful tools to build and maintain a truly rich and gratifying [00:01:00] life with low or no vision.
I'm Matthew Reeves. I'm a legally blind psychotherapist and rehabilitation counselor. I specialize in helping people adjust to disability through my practice, integral Mental Health Services in Atlanta, Georgia. I'm really glad you're listening.
Please subscribe so you don't miss an episode, and let others in the low vision community know about the podcast so the word can spread to those who might find it helpful. And now on with today's discussion.
TOPIC INTRO
Matthew Reeves: Today's guest is Nick Kirkpatrick, a 40-year-old living with Stargardt's disease, a condition he was diagnosed with at 17. Nick found Inside Out through the Stargardt subreddit, where he regularly supports others who are newly diagnosed. In this conversation, he offers a raw, honest, and at times darkly funny account of what it has taken to build a life that he genuinely wouldn't change.
This one is [00:02:00] for anyone who has ever felt like they're falling behind and needed to hear that the detours sometimes lead somewhere worth going
INTERVIEW
Matthew Reeves: Nick, thanks for being here today,
Nik Kirkpatrick: Yeah,
Matthew Reeves: at Inside Out. Um, I, you know, a lot of these episodes are, um, I'll bring in somebody with expertise in a particular area, but, uh, the feedback I get is that the episodes where we just talk about people's experience, um, those matter a lot.
So, um, and
that's,
Nik Kirkpatrick: do
Matthew Reeves: who knows more than we do. Exactly. So, uh, I'm really grateful for you, your willingness to share your experience, uh, with vision loss today. So, uh, why don't I just ask you to start by introducing yourself and launching into your story, and then we'll take it from there
Nik Kirkpatrick: My name is Nicholas Kirkpatrick. Um, I was-- I'm forty years old. I was diagnosed with Stargardt's, um, when I was seventeen. Um, it's been a long road [00:03:00] to get to here, but, I do think that the course of time, a person is able to accept circumstances that they have no control over. Um, when I was diagnosed, I-- When I was thirteen, my optometrist couldn't get my vision to twenty/twenty, around the time that I was supposed to start learning how to drive, you know, my vision couldn't be corrected, and my mom was like, "We have to figure out what's going on, why this, you know, can't be fixed." And so o-over the course of doctors, I ended up at a neuro-ophthalmologist, which I came to learn is not the correct person to diagnose this, and I got a clinical diagnosis like you did. Um, or he just looked at the pictures and said, "This is what this is." on the way home from that doctor's appointment, my mom said to me, "Well, I guess you're just gonna have [00:04:00] to learn to see out of your periphery." And I was like, "Cool. Thanks for the, um, on that." and so
Matthew Reeves: Did that feel supportive or did that feel dismissive?
Nik Kirkpatrick: It
Matthew Reeves: Yeah. Okay
Nik Kirkpatrick: "Well, aw sh- aw shucks," type of thing, you know?
Matthew Reeves: Right. Kind of minimizing
Nik Kirkpatrick: yeah. So the neuro-ophthalmologist that diagnosed me told me that the deterioration in my vision would take c- uh, place over the course of five to 10 years. And at that point I think I was like 20/70 or something like that.
So like not great, but not terrible. and so I kind of pretended like it wasn't real. I would use it as a joke sometimes, but I didn't... You know, I went to college. I didn't ask for any assistance. I basically, you know, stopped going to class [00:05:00] because it was pointless y- to go to a math class
Matthew Reeves: Now this was, so college you were, uh, uh, presumably 18 or so. So this is within that range of when the doctor had told you that your vision was going to deteriorate essentially to its maximum level, which I think no doctor can predict with Stargardt's. But so how...
Nik Kirkpatrick: it, he didn't know?
Matthew Reeves: Yeah, yeah. How, what were, what was your experience like at that point?
'Cause I imagine it was not the same as when you were 13.
Nik Kirkpatrick: Uh, in college.
Matthew Reeves: Yeah
Nik Kirkpatrick: I mean, I could sit in the front of the class and not read the board, and I just found that it was a pointless exercise, you know? and I didn't want to-- Still sometimes I don't want to be the blind guy, but at that point, you know, you really don't wanna be the blind person.
Matthew Reeves: Right
Nik Kirkpatrick: uh, so I'm on the Stargardt subreddit.
That's how I found you. most of my interactions on the [00:06:00] subreddit are with people who have just been diagnosed, they have no idea what's going to happen to them in the same-- Well, not in the same way that I didn't because I was given incorrect information, but still you don't know. um, so my advice to them is get as much schooling as you can while it's not that difficult. a therapist because are things that you have to work through in your mind,
Matthew Reeves: Right
Nik Kirkpatrick: and you need to have a, a soundboard for that who is not invested in your life in any way except that this is the person that you talk to about these things because they do have to come out. And your family [00:07:00] will have certain things that they don't wanna hear, or they-- makes them upset or, or, or.
So you have to have an independent arbitrator essentially to help you work through these things. Um, I had a
Matthew Reeves: when, when did you start, uh, your therapy journey? Uh, when did you start incorporating that into your, into your grief process?
Nik Kirkpatrick: I mean, honestly, the, when did I start incorporating it successfully or when did I just
Matthew Reeves: Well,
Nik Kirkpatrick: start?
Matthew Reeves: that's a story into itself. Yeah, tell... I'd love to hear more about that
Nik Kirkpatrick: so, um, after college I started working in restaurants. I'd kind of always worked in restaurants, so it was an easy way to get money. And, So after college I started working in a [00:08:00] restaurant and I Ended up moving to Chicago. Uh, my now wife was my roommate in Chicago in like 2008, 2009. um, I got fired from my job, which I deserved to be fired. I...
Matthew Reeves: related
Nik Kirkpatrick: No, absolutely
Matthew Reeves: Okay,
Nik Kirkpatrick: it
Matthew Reeves: I see
Nik Kirkpatrick: I was poor and so I pulled a scam and I deserved to be fired. so I end up moving back to Detroit. Um In that time, I was like, I wouldn't hire a blind person if I could hire someone who can see. So it was really hard for me to go on job interviews people I didn't know and explain this thing and... 'Cause my, um, supposition was that they'll just turn around and be like, "Well, this guy, this person can [00:09:00] see, I'm gonna hire them. It'll be easier, right? um I was depressed and I was broke and I was living with my dad. And I found a therapist, and she worked with me and my mom, you know, she gave me a discounted rate and my mom paid for it. I think I went on like, I don't know, three sessions and my mom didn't send the check or whatever happened, and she sent me a really passive-aggressive, uh, email our relationship was over.
Matthew Reeves: I'm sorry to hear that. That's not how that's supposed to go
Nik Kirkpatrick: right. And like I knew that intuitively at the time. Um, so it was probably 12 years later that I went into this again. It was the pandemic. Um, I had [00:10:00] been working, my unemployment ran out and my wife had started working again. We both work in restaurants. um, I was depressed. I was borrowing money from my mom to pay my bills. And so I-- A, a bunch of things kind of came together at the same time. I started going to, my retinologist and I got into therapy and like through the course of the retinologist you talk to like, I don't know, a dozen people, um, including like the occupational therapist, et cetera, et cetera. And none of them knew what to do.
Like I don't use any visual aids. I don't use a magnifying glass. It doesn't really improve anything for me. Um, but seeing these people who [00:11:00] didn't what to do but were trying really gave me a confidence in myself that There wasn't something wrong with me. I think this is the theme of the podcast, which is to say there's something wrong with ev- everyone. there's not anything wrong with anyone, you know?
Matthew Reeves: Yeah
Nik Kirkpatrick: so I got into therapy again. Uh, that lady, the first lady Didn't. She broke up with me after the first session an unrelated thing. Um, I reached out to my retinologist, and she recommended one of her patients was a therapist. so I talked to her for probably about three months. she was new. She wasn't very good. and she switched practices, and I was [00:12:00] like, "Well, I'm going on vacation. email me from your new practice, and we'll get back together." She never did that, whether it was, you know, or it just she forgot, whatever. Um, and I finally landed with someone three years ago, and I almost need-- Most of my therapy was not for my vision. kind of had already therapized myself about it, you know?
Matthew Reeves: Yeah
Nik Kirkpatrick: Um, I do still struggle once in a while to, you know, explain myself or not explain myself. I know that there have been other people that you've spoken to that just, like, own it, period. Um, I find the conversation to be tedious, and I'm not a big fan of tedium, so I kind of just, like, let [00:13:00] people figure it out on their own.
And if they wanna, you know, ask questions, they're more than welcome to ask questions
Matthew Reeves: You're talking about letting, letting people figure out where you are a- and understanding your experience. Is that what you're referring to or is it something... Okay
Nik Kirkpatrick: I don't When I was younger and I would tell people that I was blind or I couldn't see and, you know, my vision could not be corrected to 20/20, the first question I always got was, "Can't you get LASIK?"
Matthew Reeves: Right.
Nik Kirkpatrick: And it's like, "Yeah, my doctor didn't think of that." You know? Like, what are
Matthew Reeves: Yeah.
Nik Kirkpatrick: about here?
Thank you for your educated opinion. You know what I mean? So that
Matthew Reeves: Yeah.
Nik Kirkpatrick: off to the whole thing
Matthew Reeves: Yeah. It's easy... I think it's really easy when you live in something difficult 24 hours a day, seven days a week, and then other people pop in and, and offer suggestions that are, like, these very shallow, early, ill-informed opinions. It's easy to get pretty [00:14:00] snarky about that. Uh, I know I've been there.
It's like, "Yeah, thank- thanks for the, the article you sent me.
Nik Kirkpatrick: Yeah.
Matthew Reeves: We're, we're, we're way beyond that."
Nik Kirkpatrick: yeah, no, my mom would-- she would always send me about studies and like, oh, there, you know, clickbait headlines like may be a cure or whatever. And I'm just like, I have medical professionals that get paid a lot of money and spend their entire lives talking about this. When there's something relevant to me, they'll let me know about it.
Thank you very much.
Matthew Reeves: Right. At least that's the hope, yeah.
Nik Kirkpatrick: Yeah,
Matthew Reeves: Um, what, when, when you, when you did get back into, you finally found a therapist that you stayed with for a while, and you said a lot of it wasn't vision-related. I'm curious about that, and I, I'm not asking you to go into your personal therapy story. That, that's your th- that's for you.
Um, but one thing I've noticed in the work I do is that a lot of the [00:15:00] time when people are trying to, especially early in the vision loss process, the progressive dis- a disability process, uh, previous experiences, especially really difficult experiences, those are the things that kind of make it hard to adjust to the vision loss.
Like, they're connected. Th- things that are not related to vision can end up impacting our ability to adjust to the vision loss. Is that something, does that story sound familiar to you? Is that something
Nik Kirkpatrick: kind of. Like, I-- So I went on Social Security in 2021 or '22, um, and that basically gave me the amount of money that I needed to, you know, pay my electric bill, pay the gas bill, pay the homeowner's insurance, and really that's about it, you know? Um, so when my wife and I would go out and [00:16:00] do things, like there's a-- We went to a re- we went to a music festival in Chicago, um, several years ago, and a friend came with us, uh, we went to a restaurant, and I don't put out my debit card when we go to pay the bill, right? So for some reason she internalized that as like, don't pay for things. I shouldn't be included in like how we decide how to split up the bill, et cetera, et cetera. And earlier in the day, she had said something along the lines of dividing by three is hard. And I kind of wanted to bang my head against the wall because I can like, I'm really good at math. And, uh, so we're at this restaurant and she wanted the server to like do all this stuff to make sure the bill was exactly even. I looked at him and I was just like, we had three appetizers, give her one and [00:17:00] give us two, like we're done here, you know? And this person specifically was, very, she was weird about money. And because I didn't have any, I, it like lessened my relevance in interacting, you know? And so, you know, I back home and I'm telling my therapist this whole story, and the whole weekend was kind of a disaster because she was going through... She had other issues, but um Like I have, uh, I'm spending a whole therapy session not talking about how I can't see, but I'm talking about how because I can't see, I'm having this negative interaction with this person on a totally unrelated issue
Matthew Reeves: So you're, in your mind it was, it was like if, if the vision loss wasn't happening, I would just be taking care of the math. I would be handling this, and [00:18:00] all the rest of this would not even be happening
Nik Kirkpatrick: through no action of my own. You know what I mean? Like, I wasn't involved in her deciding that I wasn't able to decide this
Matthew Reeves: Right
So the expectations of others played a role. Your own inability to grab the bill and take care of it played a role. Uh, and internalizing her, uh, messages played a role. It sounds like that was a complicated interaction.
Nik Kirkpatrick: Yeah, I
Matthew Reeves: Uh
Nik Kirkpatrick: it, to me, at the end of the day, it's stupidity. You know? Like, that's really where I land on it
Matthew Reeves: That's, you know, if, if you're feeling like, uh, other people are not up to it, up to, up to interfacing with you and understanding what you're going through, like how have you, how have you dealt with that? Like that, that... There's a lot of, a lot of the world is incapable. They're not educated on this. They're not, maybe not even willing.[00:19:00]
Um, so that can shrink the world quite a bit
Nik Kirkpatrick: Yeah, I mean, I think that most people are Uh, accepting and understanding even without, you know-- Like, I work at the, at a restaurant with my wife now a couple days a week, so she kind of let people know that work there, like, this, my husband go, has this thing and so this is what sometimes may happen, you know?
And no one has been any type of way with me, uh, negatively. Um, so generally speaking, when someone is nasty or someone is not accepting or understanding, it says more about them than it does about you. And I don't have time for those people. So my world can be small. That's [00:20:00] fine. If they have a problem, they can go away and have that problem on their own
Matthew Reeves: So for you, quality over quantity
Nik Kirkpatrick: Oh, 100%.
Matthew Reeves: Yeah. Yeah. That's, uh ... I'm, I'm curious about that work relationship where your wife is and you're there and, you know, disclosure and t- letting people know what you're going through in an environment that's notoriously difficult for low vision. Restaurants are a minefield for, for low vision.
Nik Kirkpatrick: frankly, like I've worked at places that I shouldn't have because it was dangerous. like too dark, too many stairs, n- many people that don't know what's going on with me personally, too many moving parts, you know, lots of turnover in staff. And, um, played basketball when I was a kid, [00:21:00] I really do-- Like my ability to navigate working in that restaurant was because I played basketball and I have footwork.
You know what I mean? So like I
Matthew Reeves: Gotcha.
Nik Kirkpatrick: on a dime and turn just the way that you need to to get by a person and not, you know, knock them over or knock a tray down, whatever. Um
Matthew Reeves: That, yeah, I f- I found that situational awareness becomes a real skill for, for people with, with vision loss
Nik Kirkpatrick: But also
Matthew Reeves: there's so much we can't take in, so we really pay attention to what we can
Nik Kirkpatrick: Well, that's where the periphery comes in. My
Matthew Reeves: Yeah
Nik Kirkpatrick: certain point, uh, you know, all those years ago, being able to see out of your periphery in that situation is a huge gift because most people just look straight ahead, and how you can, you know, run into people or, or be bumped into, et cetera, et cetera. Um, uh, it's funny, my [00:22:00] mother-in-law just diagnosed with age-related macular degeneration um, she-- This was-- I think this happened within the past month or so, and she's kinda freaking out, you know. And she paints, and she's worried that her painting is gonna change, or she's not gonna be able to do the things that she used to do, and told her, you know, "You'd be surprised the coping mechanisms that you can come up with," you know. And vision right now is, like, twenty-forty, and she said something-- She sent me a text, and I was like Your vision is better now than mine was when I was 17 years old. Like, I am able to walk around a restaurant with a glass resting on my wrist in non-slip shoes, and I don't fall down. You're gonna be okay
Matthew Reeves: It is, it is [00:23:00] possible to, yeah.
Nik Kirkpatrick: Mm-hmm
Matthew Reeves: Um, you mentioned the coping mechanisms. What, what has been the most useful to you? What have you figured out that has been helpful for you navigating both emotionally and just logistically?
Nik Kirkpatrick: Yeah, I mean Emotionally, I, I've always been, um, I don't know how to say it exactly. I've always been, I've always thought I was good. I always thought I was cool, someone who deserved to have friends and be valued, and like I'm cool. You know what I mean? So I don't know, like I think I'd had that already before I found out about [00:24:00] the vision loss, and So at the, at the end of it, it's like, if you don't have time for me, then I don't have time for you, and it's pretty cut and dry. Um, as far as physically, at this point I couldn't even tell you just because it's so natural, and I haven't-- I never really thought about it in that way, you know? I don't know. I look up and to the left when I really wanna see something. I was at a doctor's office, and they were-- showed me, uh... It was like different shades and like what, how, how light of a shade can you see, I think was the test. And I looked up and to the left, and the lady said, "Ooh, a truly different perspective," you know, 'cause they don't know what to say. Um, uh, that's just like [00:25:00] a natural thing that I do. I,
Matthew Reeves: Great
Nik Kirkpatrick: I couldn't say exactly. But
Matthew Reeves: Yeah. I do the same thing, and we have the same- we both have Stargardt's, and I've, I, I, I, eye contact is very difficult for me 'cause people will think I'm looking over their
Nik Kirkpatrick: Yeah
Matthew Reeves: head or there's something behind them that I, that's distracting me.
Nik Kirkpatrick: Mm-hmm.
Matthew Reeves: Like, no, that's just me seeing you the best way I can.
Nik Kirkpatrick: Yeah.
Matthew Reeves: Uh
Nik Kirkpatrick: funny. I worked with a woman, and I had worked with her for, like, over a year, and, um, when we would talk, I would kinda look past her, and she my wife about it one day. And she was like, "Why does he do that?" And she was like, "'Cause he can't actually see you if he's looking at you." I actually just didn't wanna be talking to her.
Matthew Reeves: It can be two things at once.
Nik Kirkpatrick: I was stuck, yeah, and so that, uh, excuse got me out of, you know, having a conversation I wasn't very interested in having. So that was good, you know?
Matthew Reeves: Yeah. You [00:26:00] mentioned, I just wanted to rewind for a second. You were talking about that sense of, um, the word you used was being, is I'm cool. A- and, and in my mind it was translating like, I'm good, like I'm solid. And where did that come from for you? 'Cause for so many people that's, that's not assumed. Like, that's a gift to have that.
Um, what, where did that come from for you?
Nik Kirkpatrick: I mean I, so if I really wanted to dial it back and reverse engineer it, I would have to say that, uh, having a negative example can be just as good as having a positive example. So neither of my parents is cool. Um, and grew up and I was like, "I'm not gonna be like that." So this is another thing that, you know, predated [00:27:00] any diagnosis or anything like that.
Matthew Reeves: Right
Nik Kirkpatrick: Um And we're
Matthew Reeves: What did that mean for you to... What, what did you see in them that you didn't want to replicate? What, what does that mean for you to be cool?
Nik Kirkpatrick: uh, emotional response versus logical response, um, just making bad decisions and then not cleaning up your trash. And when you don't clean up your trash, you just end up with a big pile of trash, you know? Um, and it-- I think to a certain extent when we're younger, we all kind of do that. Um, and in certain instances where I didn't clean up my trash, then it, um things didn't turn out well. So I've realized you gotta clean up [00:28:00] your trash, you know? Um
Matthew Reeves: the level of personal responsibility
Nik Kirkpatrick: Yeah, just like a tiny bit. That's all you need.
Matthew Reeves: Don't need it
Nik Kirkpatrick: most things that you do and most things that happen to you don't matter. Like sometimes I think about how many times in my life I've cried and how many of the reasons that I cried can I remember, and those numbers do not equate.
Matthew Reeves: What, how has that sense of personal responsibility and cleaning up your trash and like t- accountability, personal accountability, all of that, how has that... What's the intersection between that and your s- your sense of yourself in the context of vision loss? And, and that's a complicate- I'm, I'm asking a convoluted question, but does that come across?
Nik Kirkpatrick: Yeah, I mean, I think it goes, see this is I think back to kind of the [00:29:00] crux of what we're trying to get at in this podcast is for anyone out there who has been recently diagnosed and you're a teenager or, you know, you're 20 years old, go to school, educated. I am not educated. I'm on Social Security.
It's $1,000 a month, and I work an hourly job two days a week. if I had gone to school my economy would be much different. And the best way for a blind person to stay out of poverty is to be educated, period. Um And recognizing that as a 40-year-old person, I did not up my trash when I was young
Matthew Reeves: So your message is one of caution and being proactive
Nik Kirkpatrick: Yeah. I [00:30:00] mean, one, my wife, when I was first going back to the, um, retinologist, I think I had never explained to her before that I had a misconception of what would happen, to my vision over the period of what time until maybe like five years ago. it changed, I think, her perspective of why we were where we were at the time. You know, I wasn't able to work. I wasn't able to get up the gumption to go on a job interview because I was like, "I'm gonna get rejected, and if I'm just gonna get rejected over and over again, why am I trying in the first place?" And I wasn't in a very good place in my mind. But even after that, when I was in a better place, I was like, "I need to go somewhere where I [00:31:00] have time to figure out where things are and what to do in this situation," et cetera, et cetera. And you know, she got a job at a place where the owner is great, and the atmosphere is relaxed, and I was able to take that time.
And I think after the first couple weeks, um, I was working there, I went to the owner and I was like, of these tiny brunette ladies look exactly the same to me. Like, I can't tell the difference between one or the other. Do you have any advice for that?" And he was basically like, "No." Which is fine. Um, and I do recognize them now at this point.
It's been a few months. But, um I was able to take the time, and that's what I needed. I needed someone-- I needed to be in a place that was patient, and
Matthew Reeves: Oh,
Nik Kirkpatrick: to get that[00:32:00]
Matthew Reeves: I'm so glad you said that. Being in a place that's patient is such a, a, a gift, and a- and boy, do we live in a world that does not promote patience.
Nik Kirkpatrick: Nobody's patient. It's insane
Matthew Reeves: it is, it is really challenging for those of us that need more time, and, um, y- you also have talked about, like, distinguishing between people who look similar.
That is a big issue for me as well, and, and I rely more on voice,
Nik Kirkpatrick: Mm-hmm.
Matthew Reeves: means on the one hand, if we're approaching each other and you're not talking, like, that doesn't help. Like I don't have a voice to listen to. But also it takes, for me, much longer to kind of lock a voice print into my head than it does, I think, for, for a normally sighted person to lock a face print into their head.
So I just need more exposure to people talking and their speech patterns and, and subtle things that I might be able to pick up on, like body language. But, like, even things that I think a lot of people do rely on, like hair or [00:33:00] clothing, that changes from day to day. Um, and we need something that's more reliable, uh, because we can't look at facial features in the same way that, that other people do.
So I'm, I'm grateful you pointed that out. I think that's a big deal
Nik Kirkpatrick: yeah, I rely on hair. Um, like I said, when everyone has, you know, the same shade of hair or it's a similar length, it's... it makes it very difficult.
Matthew Reeves: Very difficult, yeah. The su- the subtleties of the face do not appear in the hair,
Nik Kirkpatrick: Yeah.
Matthew Reeves: did, we wouldn't be able to see them, so um, yeah, you're absolutely right. Um, what has... Well, and I, I wanna return a little bit to the idea, you mentioned something that I've experienced as well about some of the d- uh, it's not necessarily depression, but some of the pessimism that can come in when we think, "How can I get a job?
Anybody who's looking at hiring me versus somebody without vision loss, why would they pick me?"
Nik Kirkpatrick: Mm-hmm
Matthew Reeves: [00:34:00] Right? It like, and that just immediately causes us to think we're, we, we can't have a gratifying career. We can't. Like, it's just closed off. Um, and I've, I've seen, it is hard. Like, I, I am not minimizing that 'cause I've been there, and it took a lot, and I had some privilege to make it happen.
But, um, it, there are pathways through that, and I think that's one of the things that therapy can help with is, is to find strengths. Like, you have, just in hearing your story, your vision loss has given you, or you've earned it, you've, you've worked to achieve strengths that have come out of it. Um, you're a problem solver, right?
You've got confidence. Uh, and these are assets that we can figure out how to bring into a job interview. Um, it, it's hard. Like, even getting the interview is tough [00:35:00] these days. Um, but, but, but I would like to just send the message that there, that there is optimism, um, 'cause not everybody is des- destined for college.
It's not for everyone. Uh, so education is one key asset, but, um, there, there are others as well, and that's something a, a good therapist should be able to help with. Do you have thoughts on that?
Nik Kirkpatrick: Um I think that In A vacuum that is true. I think that if your job is more towards labor the sighted person does have an advantage over you. think that if your job is expertise you gain, whether it is, [00:36:00] you know, through college or a trade, et cetera, et cetera,
Matthew Reeves: Right
Nik Kirkpatrick: the negative impact of your vision exists only in your mind. so that's why I would advise people to trend toward those jobs, because if you're an expert, you're an expert. It doesn't matter if you can see or not. You know, if your job is to cook on a line in a restaurant, the sighted person's gonna get that job. They gotta read tickets, you know? Um, if your job is to a touch screen to input orders for people, the sighted person's gonna get that job. It's just [00:37:00] the truth, you know? So
Matthew Reeves: So play to your strengths
Nik Kirkpatrick: Play to your strengths, yes.
Matthew Reeves: and veer, veer away from the things that challenge us. Yeah.
Nik Kirkpatrick: minimize your weakness, you
Matthew Reeves: Yeah
Nik Kirkpatrick: you're an expert, no one can take that away from you, and you can show it in a job interview. I can't show a restaurant manager that can be a host in a job interview if I can't read the application or fill it out.
You know what I'm saying? Like, those two things don't compute
Matthew Reeves: Yeah. I'm, I'm hearing your- the- an important message there that, that I think sometimes we do oversimplify the optimism and, and the encouragement by saying, "Oh, you can do anything." Well, I can't be a fighter pilot. Like, it ain't gonna happen.
Nik Kirkpatrick: I
Matthew Reeves: Uh, you know
Nik Kirkpatrick: quote-unquote, "can do anything they want," but if you wanna be a brain surgeon, [00:38:00] probably check in next life, you know?
Matthew Reeves: It, I was thinking the other day about this and, and how to phrase it, 'cause that's a lot of my job is figuring out how to take these things and phrasing them in, in nuggets that are useful to people. And I was, I was... And, and sometimes that comes across as cliche or cheesy, and that's not my intention, but, you know, so be it.
If it, if it works, it works.
Nik Kirkpatrick: Yeah
Matthew Reeves: thinking, like, I may not be able to do anything, but I can be anyone I want to be, and we can separate the doing from the being. And like, like you're saying, like the accountability and the responsibility and the values and, and like, you're, you're talking about be- You've learned lessons through your life that have taught you the importance of being the, the person you wanna be.
And just because you can't do certain things does not mean you can't be that person
Nik Kirkpatrick: Yeah, I think it's a huge problem in society that, know, you meet someone, one of the [00:39:00] first questions they ask you is, "Where do-- what do you do for work?"
Matthew Reeves: Great
Nik Kirkpatrick: 'Cause that's the least por- important thing about anyone I've ever met in my entire life
Matthew Reeves: Yeah. Yeah. Occupation is not identity at all. Um, and vision Vision loss oftentimes we feel like it's an attack on our identity because we associate who we are with what we can do. And when vision starts impacting what we can do, we feel like our identity is in jeopardy. And that's a big part of the grieving process is coming to terms with that and, and finding identity in other things.
Nik Kirkpatrick: Yeah, I mean, it kinda goes back to my mother-in-law, you know? She is worried that she can't paint anymore or won't be able to paint shortly, her painting is just gonna change. She's still gonna do it. She's still gonna be able to do it. It'll just be different, you [00:40:00] know?
Matthew Reeves: Yeah. Yeah.
Nik Kirkpatrick: yeah
Matthew Reeves: And maybe perhaps, I, I, I don't have a crystal ball, but maybe even more meaningful to her or meaningful to her in a new way. Um, and maybe meaningful to other people in a new way. You never know.
Nik Kirkpatrick: Mm-hmm. No, one of the things in my, therapy session and getting... The last time I started therapy, I was pretty depressed. and one of the things I realized coming out of it was that I was a blind basketball player. Like, I made a junior varsity team in my sophomore year, you know? And, like, I tell people about that now.
I play chess on chess.com, and um triple tap maximize the screen so I can see about half the board at the same time. or I can see about half the board at a time. uh, I was [00:41:00] texting with the person I was playing against, and they were like, "Oh my God, how do you do that? That's so cool." And It is cool.
And I'm not very good, but my-- I'm in the 65th percentile on chess.com right now, so I feel like that's pretty good
Matthew Reeves: Because you've built a skill of, like you're visually seeing half the board, but in your mind you're memorizing uh, the entire board. I, I don't play chess, but the catchphrase I've heard is see the whole board.
Nik Kirkpatrick: Mm-hmm.
Matthew Reeves: And that's, like
Nik Kirkpatrick: most of the times I lose it's because I forgot what was on the other side of the board when I moved
Matthew Reeves: So you're still evolving. You're still gaining that, that coping mechanism
Nik Kirkpatrick: Yeah, for sure
Matthew Reeves: of figuring out how to memorize it and memorize it dynamically, which is a, as I understand it, a key part of chess is visualizing the future board,
Nik Kirkpatrick: Yes.
Matthew Reeves: visualizing the, the moves that are still to come. So that's kind of fundamental [00:42:00] to, to chess.
You're just doing it at, at, uh, on turbo, turbo speed. That's, that's a very cool ex- uh, story. I'm glad you shared that. Um- What... Is there, is there anything, you know, we're, we're starting to wrap up here. I'm wondering about, uh, you- you've talked about le- lessons learned in your life, starting with a diagnosis that was not smooth, family support that maybe wasn't everything you hoped it would be, uh, a career trajectory that you have some, some thoughts on about how you wish that had gone differently.
There's a lot of, there's a lot of, uh, story in there. What... If you were to summarize it for, for the audience, for somebody listening who's maybe early in the journey or maybe not, maybe they're later in the journey like you, uh, what, what messages would you have? What thoughts do you have on how to summarize what you learned?
Nik Kirkpatrick: I mean, to put a [00:43:00] cliche on it, I would say that everything happens for a reason. if I had been responsible when I was a teenager and when I was in c- at college age and done all the things, I never would've been working at the place that I was working when I met the person who's now my wife, we wouldn't be living where we are.
We wouldn't have the dog that we have now, who is the best, most insane dog of all time. And s- nothing about my life would be the same, and I wouldn't change a thing about it. So If you make the mistake, own it. If you do the right thing, be grateful and give back because there will be someone [00:44:00] else behind you who is dealing with the exa-- with a very similar, if not the exact same situation. And they will have the fear that you had when you learned about what was going to happen to you, they need the support in the same way that you needed it, that I needed it, that we all needed it
Matthew Reeves: That's a great message of turning, of finding meaning in regret and, and discover- and discovering how missteps that you may not have intended can turn into something really quite wonderful
Nik Kirkpatrick: Let the universe come to you
Matthew Reeves: and accept it when it does
Nik Kirkpatrick: And accept it when it does,
Matthew Reeves: Very good. Yeah. Well, thank you for that. Thank you for that. Uh, we'll wrap up. I'll leave it there for today. [00:45:00] Thank you so much for, for, uh, offering yourself so candidly and openly. Uh, I think that's, that's really valuable, and I'm grateful for it. Thank you
Nik Kirkpatrick: Thank you for having me
RECAP
Matthew Reeves: Nick came on today to share his unfiltered experience living with Stargardt's disease, from a dismissive diagnosis at 17 to years of avoidance, economic hardship, , and a winding road through therapy. He talked about the grief that hides in practical moments, the exhaustion of explaining yourself to a world that isn't always patient, and the surprising self-assurance that carried him through.
He left us with a message that was equal parts caution and grace. Own your mistakes, play to your strengths, and let the universe come to you. Then accept it when it does
OUTRO
Matthew Reeves: Thanks for joining us for this episode of Insight Out. [00:46:00] You are the reason this podcast exists and we'd love to hear from you. You can leave us a voice message at speakpipe.com/insightoutpod. That's speakpipe.com/insightoutpod. There, you can share your thoughts about today's conversation, suggest a topic for a future episode, or tell us about your experience living with vision loss. Again, that's speakpipe.com/insightoutpod.
Insight Out is produced by Integral Mental Health Services, my private practice that offers psychotherapy for adults in Georgia and disability adjustment and chronic illness counseling nationwide. Visit us at integralmhs.com and you can visit insightoutpod.com to catch up on all the episodes and to find links for subscribing in all [00:47:00] the major podcast apps. A video version of this podcast is available on YouTube. Search for the channel, using the handle @inSightOutPod. You can also find us on social media using that same handle. I hope you'll join us for the next episode of inSight Out. Subscribe now in your favorite podcast app to stay connected. Thanks again for listening.