Julius Sweetland created OptiKey, a free eye tracking app for those unable to type. Josh also talks with Analy Perez and Kevin Lasher on ways it will help.
Listen to This Episode
- OptiKey on GitHub: OptiKey.org
- Twitter: @OptiKey_Julius
- YouTube: OptiKey by Julius Sweetland
- reddit thread: “Eye tracking software for sufferers of ALS/MND can cost tends of thousands of dollars, so I’ve spent 3.5 years of my spare time writing a free & open-source alternative – meet OptiKey (C#, Rx, WPF)”
This transcript may differ in minor instances from the audio content. Please notify Josh Morgan of any errors you may find.
Monologue by Josh Morgan
This is The Plural of You, a podcast about people helping people. I’m Josh Morgan.
Julius Sweetland is a software developer and programmer from London, England. He’s developed an eye-tracking application called OptiKey, which allows people with motor and speech limitations to use computers with their eyes, similar to texting on a smartphone. He spent three and a half years developing OptiKey in honor of his aunt, who died a few years ago due to motor neuron disease. He’s released it for free as an open source project. Apps like these existed before OptiKey, but their use was restricted either because of cost or because of flawed interfaces. When Julius announced a new version of OptiKey on reddit.com, it went viral, attracting an outpouring of support from all over the world. I talked with Julius about OptiKey at his home via Skype, and I’ll play that conversation in a moment.
I also talked with two other people for this episode. One is Analy Perez, a design student from Santa Clarita, California, and the other is Kevin Lasher, a private-care nurse from Houston, Texas. Analy and Kevin have both said that OptiKey would help them accomplish things that weren’t possible before.
I have next to no experience with the illnesses and conditions that Julius had in mind when he developed OptiKey, so I didn’t feel qualified to talk about them. That’s why I’m glad Analy and Kevin agreed to share their stories with me. Julius certainly knows more than I do about the people his app is intended for, but I thought Analy and Kevin could help me to fill in some blanks we may have missed. I’ll play my conversation with Julius first, and you’ll hear from Analy and Kevin later.
What’s interesting to me about Analy and Kevin is that I asked them if they would help me to better understand Julius’s work, but I found myself wanting to talk with them about their own projects. Maybe I’ll talk to both of them again in the future. For now, here’s Julius Sweetland, the creator of OptiKey.
Interview with Julius Sweetland
JS: Hey, Josh. How are you?
JM: I’m great. How are you?
JS: Very well. Sorry about the confusion with the time zones.
JM: I was about to apologize for that, too. None of the websites I read bothered to mention that you were on Summer Time.
JS: [laughs] Yeah, it can be a confusing thing to get your head around.
JM: So I first learned about you through your posts on reddit. It seems like you’ve had a busy few days since you announced Version 2 of OptiKey. What’s the experience been like for you?
JS: It’s been phenomenal. The support from people has been overwhelming. I’ve received hundreds of emails, offers to translate OptiKey into every language I can imagine, websites being donated, people donating money, stories coming through. It’s just been phenomenal.
JM: Could you explain what OptiKey is and what the purpose is behind it?
JS: Sure. OptiKey is an assistive, on-screen keyboard which runs on Windows. It’s a keyboard that you can see on your screen, and you can control it using a low-cost eye tracker. These are now available for $150, even less. There’s one on the market for $100 now. It means that you can sit in front of your computer and you can type as if you’re using a real keyboard using only your eyes. You can control your mouse in exactly the same way, using just your eyes. You can also generate speech.
JM: Who is this application intended for?
JS: When you use it, I find it nice to use but it’s not going to replace a normal keyboard and mouse, if you can use those sorts of things. It’s intended for people with motor and speech limitations. Primarily, I had it in my mind the whole time people with motor neuron disease [MND] or ALS.
JM: Have you developed applications like this before?
JS: No, no. This was my first one. Professionally, I write financial software, trading platforms, and things like that. This is a bit of a departure from that sort of world.
JM: I’m curious about your background. What was your major in college?
JS: I did a Computer Science degree from Bristol, [so] my background has always been in IT. After that, I went straight into the financial service industry and I did a lot of financial software, which I’m still doing now. I’ve been working for hedge funds, investment banks, that sort of thing. That’s where I am, so this has been a side project and a complete departure from what I’m used to.
JM: What inspired you to devote three and a half years to this project?
JS: [laughs] It’s a difficult question to answer.
JM: I’m sure.
JS: I had an aunt who died from MND. That was about four and a bit years ago.
JM: Were you close?
JS: Yeah, yeah. She’s my dad’s sister. Yeah, we were.
What was difficult about it, it was my first encounter with the disease. To that point, I had no idea it existed. The tragedy of it is you sort of watch someone lose their ability to control their body and communicate with those around them, but it leaves your brain completely intact. Your mind is trapped in this body that’s not working for you anymore. There is technology out there that helps, but it was a little bit disappointing to see how it worked and just how much money these assistive devices cost.
After she died, I had an idea in the back of my mind for quite a long time. I thought something could be made that was better than this, something could be made that was cheaper and more accessible for people. I didn’t immediately do anything about it. It just sort of stayed in the back of my mind.
Over time, I developed the genesis of an idea, and the more I read about it—I had to start at the beginning. I had to start with zero knowledge of eye tracking and all of these things. The more I read about what was already out there—I don’t know. It left me frustrated. I don’t want to mudsling in any way, but some of these products cost an absolute arm and a leg. It just struck me as being very, very unfair. That’s really what it is, so I started playing. I came up with an idea that I thought had legs.
I think the fact that it did strike me as so unfair, what people were having to fork out for these solutions, it kept me going. It’s brought it to the point where I’ve been able to release something.
JM: In your experience with these other applications, do the costs seem like they were fair to recoup what was spent on research and development?
JS: [laughs] You’re going to get me sued, Josh. Aren’t you?
JM: No, no! I’m just curious for myself.
JS: No, it’s fine. I understand that big companies have big costs to develop things like this. The companies that are out there charging a lot of money for this software and hardware, they’ve spent a lot of time making it as good as it is today. For that, you’ve got to step back and applaud them. They’ve done a great job. It’s allowing people like me and the low-cost hardware manufacturers now to stand on the shoulders of all this research and make it cheaper. That wouldn’t be possible without them.
There’s no grudge being held here, but there’s a lot of money changing hands. I think that’s true across a lot of pharmaceutical and healthcare. When you’re in, you’re in. If you’re out, it’s going to cost you a lot of money to get in.
JM: That’s probably the best possible way you could have answered that.
JS: Yeah. Please don’t sue me, anyone. [laughs]
JM: How would an app like OptiKey help someone like your aunt?
JS: If you’re in a position where you can’t use your hands, you can’t speak, you’re going to want to communicate. It’s a basic human need, isn’t it, to talk to people around you, especially if you’re having something so terrifying happen to you at the same time. I’m not saying my application would have necessarily helped her, but what I’ve tried to do is make something that gives you back the freedom to completely control the computer and talk as fast as I could possibly make it work.
I think what it will hopefully do for people is give them a free alternative. If you can’t put your hand in your pocket and come up with $10–$20,000 for these systems, try OptiKey. I’m having a lot of feedback from people saying it’s fantastic and it’s working really well for them, that it’s working better than the systems they paid for, and it’s not costing them anything. The money the have in the bank, they can use it to improve their quality of life and spend time with their family.
JM: How would an app like OptiKey be different from the other apps in the same market?
JS: There’s a good degree of overlap with some of the applications I’ve seen. There’s a lot of other things that the other applications do that mine doesn’t do. It sits alongside the ones that are out there. There are some unique features, I think I’ve solved some problems in some ways that haven’t been done before. One of the things, again without attracting the wrong sort of interest, I use a swipe motion with the eyes that allows you to capture whole words and phrases in one go rather than having to peck each letter out. That could be quite a time consuming process.
There’s other little things, like being able to control the mouse and keyboard in one global application. That’s not done by a lot of the other software that’s out there.
JM: How did you test OptiKey? Who helped you through the process?
JS: For a long time, it was just me. I would just sit down and go, “Well, how would I use it? How do I think someone who couldn’t use their arms and couldn’t speak would want it to work?” It’s been a contrived way of developing OptiKey, I suppose, but that was all I had until it was functional. At that point, I made contact with the Putney Royal Hospital for Neuro-disability. They had a look at what I’d done at that point. They put me in touch with one of their patients who has MND and happened to be an ex-software developer. He’s been perfect.
JM: Oh, great.
Are you involved with any groups or organizations that would benefit from OptiKey?
JS: Through the hospital, I’ve been put in touch with the MNDA here in the UK, which is the Motor Neuron Disease Association. I’m demoing OptiKey at an event in just over a week’s time. Hopefully that’s going to get a bit of interest from them. The main thing is making contact through reddit. I’ve had so many people, and seeing people in ALS and MND positions contacting me. There’s some really promising leads coming out of this.
JM: I’m glad to hear that.
What gave you the idea to post on reddit?
JS: [laughs] I’ve been a reddit lurker for a long time. It’s unique on the Internet. It’s the only place I’ve ever been on where people aren’t just trying to put each other down and troll and be nasty the whole time. It’s got a warm community feel to it; not always—it’s still the Internet—but generally speaking.
I’ve had it on my to-do list to post it on reddit and see if I can get some good feedback. I wasn’t expecting much, to be honest. I just thought, ‘I’ll put it in /r/programming, I’ll put it in /r/disability, I’ll put it in /r/software’ and just see if people have some feedback or know some people they can put me in touch with. It went nuts.
[laughs] It was absolutely fantastic. I was up half the night trying to reply to people, just getting over-excited about what people were saying. The video that I recorded, I had only recorded it the night before on YouTube of me demoing this. It had something like 40,000 views that night.
JM: Oh, my goodness.
JS: [baby cries] Sorry, Harry.
It’s been trundling on ever since. It’s been a fantastic response.
JM: It must be a little surreal if you weren’t expecting that kind of response and to be inundated like this in a good way.
JS: It’s been absolutely terrific. I couldn’t have imagined it was going to be that positive at all, but I’m extremely happy and grateful to everyone that it has been.
JM: How long as Version 2 been out?
JS: Version 2 is brand new. I released it maybe the day before I posted on reddit. It’s not a particularly professional thing to do. I should have tested it a bit because there are a few bugs in there that have come out since. I’ve released seven small fixes, and bits and bobs like that. It’s getting more and more stable as it goes on.
JM: I guess the flipside of that is now you have a lot of other people that can help you through the testing process.
JS: Yeah! That is something I wanted from the beginning. I knew when I started this, the amount of time I was devoting to it, it’s not going to be sustainable forever. I do want to stay in touch with this project. I’m going to stay working on it, but I was giving up far too much time. My wife has been an absolute saint putting up with me. People are coming out of the woodwork and forking the project, which is where you copy the code, start making changes and fixes, taking it down other interesting routes. It’s just been great.
JM: It’s only been a few days, but have you seen any forks that have caught your eye?
JS: Yeah! I’ve had some really useful fixes that people have posted already. Three of those made it into the last release. I haven’t seen anyone do anything huge with it yet, but like you said, it’s been a couple of days. I’m just excited to see what people come up with.
JM: Did you know anything about eye tracking functionality before you started?
JS: No, zero. I had no idea how this stuff worked.
JM: That’s what I’m wondering. How did you go about learning this process?
JS: With a lot of hit and miss, DIY attempts. I’ve got a pair of plastic glasses with no lenses in them, and it’s got a little camera that’s been converted from a PlayStation 2, I think it is. That sits on a rod in front of your eyes and tracks one of your eyes. That was one of the first attempts that I made.
Then I’ve got another one that I built, which has got these homemade LED lamps on the outside and a camera that I had to buy from a science lab supply company, and all of these little experiments as I figured out what I was doing, what was good and what was bad. It’s part of the reason it’s taken me so long. I’m really not qualified to do this.
What other types of applications do you write? I know you said you write for hedge funds, but I’m wondering how that might translate into OptiKey.
JS: The overlap’s minimal. There’s a strong technology overlap. I use a language called C-Sharp. I use that professionally, and I’ve used that in OptiKey, and a UI technology which is about how to make things appear on the screen called WPF, which In retrospect I really shouldn’t have used. One of the things people keep asking me is “Can I make it work on Macs? Can I make it work on Linux computers?” At the moment, I can’t because of that. [laughs]
JM: So it’s all Windows-based?
JS: Yeah. It’s the only part of this that couldn’t be cross-platform, so I might need to go back and rethink that.
JM: Is there anything that’s surprised you since you posted this on reddit?
JS: Yeah. I’ve had some offers from people to collaborate or to provide financial backing to keep this thing going. I was not expecting that at all, and it’s been phenomenal to speak with these people. Just the outpouring of positivity from people—it’s such a tiny thing, but the YouTube video’s now like 55–56,000 views. There’s 1,500 upvotes and four downvotes. [laughs]
JM: [laughs] Four downvotes?
JS: Yeah. This is the Internet! That doesn’t happen. It’s just been brilliant.
JM: I was happy for you when I was reading through the few threads I saw. There were people from, like, New Zealand and of course the US, just all over the world. It’s really exciting.
JS: I received a really nice email yesterday from a guy who had read the post on reddit. He was sitting in a hospital waiting room. In front of him were two guys, older guys, and they were having a conversation. One of them was saying he was sad because his stepson has ALS, and he was getting depressed because he can’t communicate very well. This guy overheard the conversation, interjected, and said, “I don’t mean to be rude, but I’ve heard about this thing” and told them what he knew about OptiKey.
That knock-on effect, I couldn’t have anticipated. It’s just made the whole thing worth it. There were long hours at 3:00, 4:00 in the morning when I was just thinking, ‘Am I wasting my time? I’m enjoying this, but is this actually going to do anything?’ The feedback’s just—it’s amazing.
JM: So what’s next? Again, I know this is early on, but what do you see in the future? Do you have any plans to expand on OptiKey or to work on similar applications?
JS: I don’t think I’m thinking beyond OptiKey yet. I don’t think it’s a finished product. There’s a lot of people who would like to see new things in new languages and features. I’m not ready to give up getting them all in there. If OptiKey got to a point where there’s enough people helping me at it, like a little community that was working on this as an open source project, then brilliant. I’d have enough time to maybe pick something else up or maybe spend a bit more time with my son who’s sitting on my lap right now.
I think I’m going to press on, I’m going to see how far I can take this and what avenues open up. Some of the more interesting things I’ve been approached with are PhD students who have got brain computer interfaces they want to try and add OptiKey. Instead of hovering over a key for too long, you just think you want to make a selection, and it will make the selection you’re looking at at the time. That’s going to be fun.
JM: What’s required to use OptiKey, like as far as equipment?
JS: OptiKey only runs on the moment on Windows. You need a Windows PC— [baby cries]
Harry, I know you want to be involved in this interview, but be a good boy. [kiss]
JM: How old is he?
JS: Five months.
JS: [laughs] Yeah, I know. He’s the best sleeper in the world, except about now.
JM: All of this is even more impressive to me because I know how difficult those first few months can be.
JS: Yeah, yeah. Luckily, like I say, he sleeps well at night, so I just stay up and underperform at work the next day.
JS: Sorry. Would you like to ask the question again?
JM: Sure, sure. What sort of equipment is required to use OptiKey?
JS: OptiKey runs on Windows PCs, laptops, and tablets. It pretty much doesn’t need anything special. To use OptiKey with an eye tracker, you’re going to have to meet the minimum requirements of that tracker. Typically they have a screen size they work with, and they need a modernish processor.
JM: I’m curious: why is it so important to you that OptiKey be free and open source?
JS: I think the reason I want OptiKey to be free is because the whole motivation behind the project was the software and the solutions that are out there, they cost too much. The whole motivation was around a feeling of unfairness about what people had to go through and money they had to find to get back the ability to communicate and use their computers again. It never sat right with me that I wanted to profiteer or make any money with it.
This thing should be free, and as soon as you throw off the shackles of trying to make money from a piece of software, open sourcing it is the next logical thing to do. [laughs] You’re not competing with anyone. There’s no sort of money to protect or competition to throw off. You might as well open your doors and see if people want to help you.
JM: You mention cost. For people that are experiencing ALS and MND, conditions like that, what are the other financial costs that have to be dealt with in addition to buying software like this?
JS: I’m not an expert, but you’ve got wheelchairs and other piece of hardware you’re going to need in your home. A lot of people have to make fairly large changes to the layout of their homes to make them wheelchair accessible, to move things, widen doors. These things don’t come for cheap. There’s a lot of money, and you’ve got to remember, as well, that you’re probably not working at this point or you’ve got no income. You’re surrounded by family that maybe you were supporting before, and you’re watching your money go out the door on things that maybe you don’t have to pay for anymore.
JM: That’s tough.
Is there anything we could do to help you in your work?
JS: The best thing that anyone could do is to help with the project. If you know anything about programming, if you know anything about testing, come and have a look at the code. Come and break it and fix it and extend it and play with it. Just help me make it better and get it to more people.
That’s the other thing: if you know anyone who you think might benefit from it or who works with this sort of technology now, tell them about it. Let’s get the word out. Let’s get people playing with it and see if it can make a difference for them.
JM: Very cool.
How can we follow you and your project online?
JS: I have a YouTube channel. You can subscribe to that and you’ll obviously see the updates as I post new videos about what features I’ve added and changes I’ve made. I have a Twitter account, which is @OptiKey_Julius. So far, it’s just to tell people that I’ve got new versions out, new videos out, that sort of thing.
Check out the GitHub repository, which is where all the code lives. It’s on GitHub.com, and then search for OptiKey.
JM: Are you happy with how the project has been so far? Do you feel satisfied?
JS: I’m extremely happy with how it’s been received. Before that, I wasn’t so sure. I had no idea if people were going to like it, if it was going to work. I’m extremely gratified. I know I’m not finished. This sort of thing is the beginning. You open a few doors, and this is where the work really starts. This is where I’m going to need some help.
JM: I guess that’s all I have. Is there anything you’d like to add?
JS: No, I don’t think so. Thanks again for giving me a platform to talk about this, hopefully get a few more people to have a look, and maybe start using OptiKey.
JM: Well, that’s all I have, Julius. Thank you for your time.
JS: That’s great. Thank you very much.
Interview with Analy Perez
Next is Analy Perez from Santa Clarita, California. She’s a design student who’s dealing with a spinal cord injury, and she aspires to design better surroundings for people with conditions like hers. She says that OptiKey can improve her workflow and help her with her studies. I talked with her about it at her home via Skype. Here’s Analy.
JM: Hi, Analy. How are you?
AP: Good, and yourself?
JM: Good. How’s your day been?
AP: It’s been a little hectic. I’m trying to finish a bunch of homework that’s due at midnight. Everything else is good.
JM: What is your major?
AP: I just received my AA for Interior Design, and I’m going for my BA in Graphic [Design].
JM: Oh, good for you.
AP: Yeah, thank you.
JM: Tell me about yourself. What’s your background?
AP: I’m just a normal, 24 year old trying to live her life. The most obvious thing is I have a spinal cord injury. That’s about it.
JM: Is there a specific reason why you chose to study graphic design?
AP: I’ve always been artistically inclined to do things, anything that’s with design. I started out with architecture, I moved on to interior design, and now I’m going for graphic design only because graphic design is something I can easily do with my injury, whereas interior and architecture, I would have to go to places [that] aren’t really wheelchair accessible. Graphic design gives me an artistic outlet and I can do things easily from home.
JM: Are there any special accommodations that you had to make to do design work?
AP: There’s things I have to do differently now. I used a thing called Dragon Dictation, but it’s not really that great. I say a line and it hears something completely different. I also use a pad called Bamboo. It’s like a giant mouse. I also use Illustrator and Photoshop. It just takes me so long because I can’t use my fingers, and I have to type everything out using the onscreen keyboard. It takes forever to do that.
JM: That’s what I was wondering. Do you use shortcut keys in Photoshop to get around?
AP: Yeah, I do that. Still, I use so many different programs. Some of them, you have to write out what you want the program to do. That’s what takes me so long. It’s not just pushing a button—it’s actually writing out what you want that specific program to do, like a circle, a line, a platform, a plane, things like that. That’s the hardest. That’s the thing that takes me the longest.
JM: Could you describe your condition and what happened?
AP: Sure. I was 20 years old. I was in a car accident because my friend was drinking. I went into the car with him and we crashed into a flatbed truck. It compressed my spine, which then bruised my spinal cord and left me as a quadriplegic. I was originally paralyzed from the neck down but eventually got movement to my arms. It just didn’t return to my fingers.
JM: What are some of the challenges you’ve faced since then?
AP: Everything. I’ve had to relearn how to do everything. Now everything is with the help of other people. I mean, absolutely everything is different. I can’t dress myself or feed myself. I can feed myself but I have to have people help me get food and things like that. It’s just—everything’s changed. Absolutely everything is different.
JM: I’m sure adapting to that emotionally took a while. Do you feel like you’re in a good place now or a better place, at least?
AP: Yeah. I definitely feel like I’m in a better place. The thing I think that helped me through is that I have a strong support system. My family’s always been there for me. I have thirty first cousins who care for me, as well.
JM: Wow, that helps.
AP: Yeah. It’s a big family. I just feel like I’ve never really lacked any emotional support. I never went through depression or anything like that.
JM: Oh, good for you. I was wondering about that.
AP: They’ve been keeping me strong, thank God.
JM: Good, good.
How would an app like OptiKey help you as a designer? Have you experimented with these types of apps before?
AP: The closest thing that I’ve experimented with is the Dragon Dictation, but it doesn’t always hear me quite well. The thing with OptiKey that I think is going to be beneficial is because—I get tired of speaking. I was originally paralyzed even with my diaphragm, so I could talk or breathe on my own. There’s times where I do get winded and I can’t speak. Dragon Dictation doesn’t always catch all of my words, so OptiKey would help me a lot in my rendering programs.
A project that would take me an hour to do now takes me four hours just because I have to type every letter individually onto the onscreen keyboard, which is the most annoying part of the whole process.
JM: What are you hoping to do from here? What do you see in the future?
AP: As far as my career?
JM: I don’t know. Just in general, like your career. Do you have any projects you’d like to try or goals in place that you’re pushing for?
AP: When my injury happened—I was injured while I was in architecture school. My way of perceiving my surroundings changed. I saw so many things that I could change as an architect and as a designer so that people with disabilities could be accommodated for their physical needs and aesthetic ones.
One thing I want to do is [help] people who are in financial strains who have just been in an incident, hopefully creating a nonprofit to renovate their homes to fit their needs, and also so it doesn’t look like a hospital. I like creating a space where it’s beautiful but it fits your physical needs.
JM: You know, it’s interesting that your perspective changed, so it affected your design aesthetic. I guess I never considered that.
AP: Yeah. Architects always have to keep that in mind, whether it’s going to work for this person or that person. You really don’t know until you’re in that situation. Everything changes. You see everything differently. That’s something I feel like I can take and use towards helping other people.
JM: That’s great.
Is there anything you’d like to say to Julius?
AP: I admire him very much. When you’re in the healthcare system and you’re fighting for equipment to help you adapt, it’s incredibly hard to make other companies understand your situation. For Julius to create something that’s so feasible and that’ll help thousands of people, it’s incredible. I commend him for all of the hard work that he’s put into this. I don’t know—I just wish there were more people like him.
JM: Is there anything I haven’t asked that you’d like to talk about?
AP: No. I think I’m pretty much set.
JM: I think that’s all I have.
JM: Thank you for your time.
AP: Okay. Good luck, Josh.
Interview with Kevin Lasher
That was Analy Perez, a design student from Santa Clarita, California sharing how OptiKey will help her.
Finally, I talked with Kevin Lasher from Houston, Texas. Kevin is a private-duty nurse, and he wants to build laptops with applications like OptiKey to distribute to his patients, or anyone who needs them, for free. I talked with Kevin at his apartment in Houston via Skype. I found out he was in the middle of moving, and I think some sounds from an empty room made it through, but that’s okay. I was glad to talk with him. Here’s Kevin.
JM: Hey, Kevin. How’s it going?
KL: Pretty good, pretty good. How are you doing?
JM: I’m doing pretty well. How’s your week been?
KL: Pretty good. I’m actually moving tomorrow, so I’ve been doing a lot of packing.
JM: Where are you moving to?
KL: Same place, in town, just a little closer to where I work, a little better priced apartment.
JM: That will be nice.
KL: Yeah, it will be.
JM: Tell me about yourself. What’s your background and what do you do?
KL: I am a 31 year old licensed practical nurse. I work mainly in private-duty nursing. I work one-on-one with high-needs patients at their homes. I’ve been doing that for the last five years. I’ve been a nurse for six. Before that, I was a staff nurse. I worked all over, anywhere there was a hospital, rehab facility, or doctor’s office that was missing somebody. I worked for a company that would put me right in and help fill that shift for their immediate needs.
JM: What made you decide to become a nurse?
KL: Honestly, when my first daughter was in the womb, I was working as a senior tech support for a large company. I just felt like one tiny, little cog in this massive machine. I really didn’t feel good about myself or what I was doing. I really wanted to contribute to the world a little better. There’s a quote that I always took to heart, which is, “Be the change you want to see in the world.”
My girlfriend at the time was going to school to be a nurse. She asked me and I said, “Why not?” It was something I had never considered before and I ended up loving it. It’s great.
JM: What are some of the conditions that you help patients to deal with?
KL: My job mainly is to provide them with as normal a life as possible, [as] if they did not have the condition, which can be quite challenging, particularly for people with ALS. My specialty has been ALS and quadriplegics, or people with traumatic brain injuries. Anyone who cannot move for themselves, I take care of.
I come in the mornings, I manage, give, and administer their medications. I help them a lot with range of motion, which is extremely important. With ALS, what happens is your body slowly loses the ability to move your muscles. It’s progressive but happens at different rates for different people. If it happened to instantly right now, mentally you would be exactly how you are now, [but] you would fall over in a slump and wouldn’t be able to breathe for yourself.
For one patient, it’s happened as quickly as nine months, from his pinky wasn’t wiggling how he wanted to being completely bed bound with a trache. I’ve worked with other patients who—it takes years for them and they can still move their limbs a little bit or turn, but they just do not have any control that they normally would.
JM: Oh, my goodness.
KL: Yeah. I take care of everything for them. You essentially become a prisoner in your own body. Not a lot of people seem to understand that, even some doctors I’ve come across. They seem to think that [the patients] are slowly turning into a vegetable but they’re not. They’re totally aware, they can comprehend everything that’s going on around them. They still have their hopes, their needs, their dreams, their wants, their worries. They don’t have the power to do it for themselves.
JM: Man, I can’t imagine.
KL: It can be very devastating. It doesn’t just affect the person, either, but their whole family. It ripples throughout. Basically, I try to minimize any of those worries as much as possible and take good care of them.
JM: What are some of the ways that you help people cope with these different challenges?
KL: You have to take care of both the mental and the physical issues, as well as relationship things. In terms of relationship, I try to explain to family members what’s going on. People get very strange sometimes, or very awkward or uncomfortable when they see somebody stuck in a nursing bed or hospital bed with tubes and machines hooked up to them. I explain to them, help them learn ways they can talk with each other. There’s numerous alternative communication techniques. They’re very slow and painstaking. It involves using your eyes and looking in certain directions to spell things out, so I’ll act as an interpreter.
Mentally, I try to keep a positive attitude for them, help keep things in perspective for them; let them know that, even though it feels like their life is over, there’s no reason for it to be. I do that by delivering the best care I can and getting them up, getting them out, getting them active. For example, I’m taking care of a 67 year old woman right now who cannot move a single muscle other than her eyes and mouth a little bit.
Physically, not moving is extremely devastating to the body. Mainly, you get a whole host of circulatory issues as well as respiratory issues. They’re very susceptible to pneumonia, stroke. Heart attack becomes a real threat. Your muscles, if you don’t continue to move them, they’ll slowly seize up and you’ll get stuck.
JM: It’s interesting to hear you say all of that. I guess what I was imagining was that you would help them more with the physical side, but it sounds like that’s only one part of what you do.
KL: When it comes to nurses, you have a whole spectrum just like any person who’s working in an industry. Not everybody pays attention to all of that, but I really strive to try and go above and beyond as I can. I really care about the people that I take care of. I just want them to have it all, you know? I’ve been blessed and cursed with strong empathy, so I feel for these people.
JM: That segues into my next question: what do you enjoy about the work that you do?
KL: Honestly, I would say the smiles and the appreciation of the family. The woman that I take care of, she has a lot of anxiety. When I see her—
JM: How many patients do you have? I’m sorry.
KL: Right now, I only have one full-time. I tend to stay with one patient for a very long time. I’ve had five total ALS patients that I have worked with, from teenager to middle age to elderly.
Right now, I work fifty hours a week taking care of one. What I enjoy the most is seeing her smile. When she starts to get worried or worked up about something and I can anticipate her needs, it’s amazing. Even though no other muscles on her face work, the smile—you can’t stop it. It’s amazing to me.
The appreciation of the family, too, because it is really rough for them. I want to make sure they have the best perception of their loved ones as possible. Lots of times with these illnesses, when people really get into trouble, it becomes a tremendous burden and can scare your family, wear them out, or tire them out. That’s their last perception of them before they pass on. If I can do all the tough work so they can just focus on enjoying being with that loved one or that family member and try to have a good time, that really makes me feel good.
JM: What was your reaction when you first read about OptiKey?
KL: Oh, man. I was amazed. I have seen some other free versions that people have made, and they’re really clunky. I’ve also worked with the professional ones. There’s a couple of big names out there. They cost tens of thousands, and it’s a tremendous burden on people who are already under a tremendous financial strain. Twenty-four seven nursing care is—you’re looking at upwards of $20,000 per week that they have to pay to have somebody watch them around the clock. Once you get an insurance company to pay that, they’re reluctant to pay for anything else beyond what they absolutely have to.
Seeing such a nice, free version out there that I could load up—I could build my own OptiKey machine that I’m going to bring with me for, I would say, less than $500 as opposed to the $13,000 price tag on some of the bigger names out there.
JM: How do you think an app like this could help your patients?
KL: The biggest thing is it can help them make their needs known, and that’s the largest challenge. Not only do you have to take the time to speak how to people in these alternative methods, if you didn’t have some sort of eye-gaze machine, you have to go through—it’s so slow. It can be unreliable because it relies on eye blinking. Sometimes you just have to blink normally, but people interpret that as meaningful when it’s not. It can be very frustrating.
My last patient [who] I worked with [for] two years, I asked if he could have any one thing back, what it would be. His answer was his voice, to be able to make his needs known. I thought that was very significant.
A machine provides entertainment, it provides a means to communicate with the ones around you, to say I love you to loved ones, to say “Hey, my forehead is really itchy. Can you just scratch it for me?” so you don’t have to deal with it. Imagine not even being able to reposition a little bit, or wiggle your nose, or scratch the [itch] that’s on your face. This just lets you communicate pretty quickly with somebody to get all of that.
JM: So I’m curious now: Where do you think your empathy comes from? Why do you have such a strong desire to help?
KL: I’d probably have to say from my mother. I was a pretty awful young child and teenager. I remember one of the biggest things she kept trying to drive home to me, over and over, is “You’ve got to think of others. Stop just thinking about yourself.” The truth was I was very selfish.
As I got older and saw more of the world—everything in life is built around me-me-me, what I want. Everyone’s impatient to go places. Everyone wants the newest, the latest, and the greatest for themselves. It’s a very selfish culture. Seeing that made me feel bad for the invisible people in society that you don’t even know about. Once I became a nurse and saw what they go through, it made my heart swell even more. I guess it was my mother always telling me to think about others, don’t just think about yourself.
Having children helps, too, and the kind of world you want to have out there for them. There’s just nothing quite as amazing as when you’re in a terrible situation, somebody holds out their hand, picks you up, dusts you off, and helps you get along. That’s the kind of world I want to live in, so that’s the kind of person I want to be.
JM: I like that.
How many children do you have? Two?
KL: Two, yup. I have a 7 year old daughter and a 2 1/2 year old son. They’re the best. [laughs]
JM: Is there anything I haven’t asked that you’d like to talk about?
KL: What I would like to do is, if anybody who is listening to your podcast currently who has a sick loved one who’s maybe in a nursing home, maybe stuck in their house, please go see them. Say hello. If they’re your family or friends, let them know you’re thinking about them. Go see them. If things are awkward or uncomfortable due to their conditions, bring an activity to do. Bring some pictures and show them on your phone. Tell them a story about what happened with your family last week or give them updates. Bring a board game, bring a book to read to them.
Try to put yourself in their place. Imagine you’ve lived this entire, rich, full life. Then you start to get older toward the end of it, in your sunset, and you’re stuck in a nursing home with some health care workers that may or may not be paid enough to care about their job. When you’re overwhelmed as a healthcare worker, you don’t have that ability to connect on a personal with those around you, so they need you. Your family members, they need you.
Go see Grandma or Grandpa, go see your great aunt. Just be there with them for a little while. Spend some time with them. Watch TV or just be there, hold their hand. You will their make their month, I guarantee it.
JM: That’s great advice.
KL: That’s the biggest thing I want people to walk away with. Too often, when someone in the family gets sick, there will be that one family member who will shoulder that entire burden by themselves, where everybody else kind of says, “Oh, thank you,” and then disappears. That person can get crushed under the weight of that responsibility. I see it all over. Help them out.
JM: This is exactly why I was hoping we could talk. I wasn’t aware of all of this. It makes sense now that you say it, but I didn’t put all of the pieces together before. Thank you for doing that.
KL: You don’t know what you don’t know. Death is something as a society, we don’t really put it out there, what it means to get old and die. We kind of hide them away. Nobody knows, but if we can know what it’s like, as long as we just lean on each other, we can make it a lot better and a lot easier.
JM: Thank you for your time, Kevin. I appreciate it.
KL: Alright. Thank you, Josh. It was a pleasure.
Conclusion by Josh Morgan
This episode of The Plural of You was produced by me, Josh Morgan, in colorful Edinboro, Pennsylvania. Mike Martinez created the music.
Visit PluralofYou.org for transcripts, show notes, and other resources. You can keep in touch on Facebook, Instagram, and Twitter at PluralofYou. Subscribe by searching for The Plural of You wherever you get your podcasts. If you’re listening through iTunes, please leave a review for The Plural of You to help others find it, too.
Quick announcement: As of this episode, I’ll be updating The Plural of You twice a month, so look for new episodes on the 1st and 15th of every month. There’s too many people I want to talk to for this podcast, so I hope you’ll check in and let me know what you think.
In closing, here’s a homework assignment.
Choose at least one of the following two options. The first is that, if you know someone or are aware of a group that could benefit from OptiKey, get in touch and let them know about it. If you don’t know who to contact, look up a list of local organizations. This could be a huge help to a lot of people who need it, but it’s up to us to help Julius spread the word.
The second is that there’s probably someone in your life that could use more of your company. Maybe it’s a family member you haven’t talked to often enough lately, or a friend that you’ve lost touch with. There’s probably a good reason why, but don’t let that hold you back from being a positive influence in their life. Like Kevin said, just being present can make a difference because it will show that you care.
That’s all for now. Thanks for helping.