Podcast interview featuring 12-12-12 project member Blake Watson
Blake is a self identified computer nerd. He has a passion for designing websites which he exercises by doing freelance and volunteer projects. He has a long-standing love affair with WordPress. Blake holds a BBA in Business Information Systems and an MBA, both from Mississippi State University. On a more personal level, Blake likes to write. He dissects the ups and downs of life with a disability on his personal blog. Blake believes that God has blessed him and is thankful for his family, friends, and community that have made his life fulfilling.
Condition: Spinal Muscular Atrophy (SMA) Type 2
SMA is a genetic neuromuscular disease. The disease manifests as muscle atrophy and severe weakness, resulting in a loss of common functions like walking, standing, dressing oneself, feeding oneself, etc. SMA is a progressive condition, meaning it gets worse over time. The severest form of SMA, Type 1, kills more babies than any other genetic disease.
Connect with Blake:
Learn more about Spinal Muscular Atrophy (SMA)
To learn more about Spinal Muscular Atrophy (SMA) please visit the fantastic website, Stop SMA, designed by Blake Watson.
Marissa: Welcome to the inaugural podcast – 12 Months, 12 Journeys, 12 Lessons. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com and I have a very special guest with me today. He’s so special, he makes my heart sing.
Mr. Blake Watson is a self-identified computer nerd. He has a passion for designing websites, which he exercises by doing freelance and volunteer projects. He has a longstanding love affair with WordPress. Blake holds a bachelor’s of Business Administration and Business Information Systems and an MBA from Mississippi State University. Blake also likes to write and he dissects the ups and downs of life with a disability on his personal blog, www.ihatestairs.org. I welcome to the show today, Mr. Blake Watson. Hello, Blake.
Marissa: Hello, Blake. Can you share with the listeners a little bit about how we met?
Blake: I, being a web designer, occasionally listen to The Big Web Show. One particular day I was down because I had applied for a job and I had not heard back from the job for several weeks. I was just down about the future and my career, so I was surfing the Internet and I stumbled across The Big Web Show. I listened to it. I don’t listen to every single episode, but I’d go there every now and then and peruse the episodes to see if anything interesting pops out.
Actually, the word “disability” caught my eye in the description of podcast #55, which was your podcast, and I just started listening. I was just like, “Holy crap, this is everything I think.”
Marissa: Basically, Blake reached out to me and that’s the way we started to contact. We clicked and hit it off right away, and that’s how we formed a relationship. I felt it was perfect to bring Blake on for the project, because this month’s project we’re going to be featuring a medical condition known as Spinal Muscular Atrophy. Blake is living with Spinal Muscular Atrophy Type 2. Blake, can you explain what SMA is and what Type 2 would stand for in the SMA world?
Blake: Spinal Muscular Atrophy is what they call a neuromuscular disease, because it affects the muscles, but it’s actually a problem with the nerves, so it’s not just a muscle disease; that’s why it’s called “neuro” muscular. It has four different types, Type 1 being the most severe and Type 4 being the least severe.
Basically, there’s a problem with the communication from the nerves to the muscles, so the muscles don’t really function exactly right. Because of that gap in communication, they start to get small. The muscle cells actually start getting smaller from not being used enough, which is the atrophy part of Spinal Muscular Atrophy. The muscles just continue to get weaker because it’s a progressive disease.
Marissa: One of the things that stood out was you used the word “atrophy.” From a layman’s perspective, when I heard the word atrophy, it pops up in my head that you can exercise the muscles and that will keep them from atrophying. Is that a correct assumption or can you prevent the atrophying of the muscle?
Blake: Normally, with a typical person, that’s why their muscles don’t atrophy – because they use them. The problem with SMA is no matter how much you try to use your muscles, there’s that gap in communication. No matter how much you try…
When my mom realized there was something wrong, it was because we had these two couches together and I was crawling over the two armrests where the two couches were next to each other and she noticed that I just started getting slower when I’d crawl and have to crawl over the hump in the middle and I started going slower. That’s because I was using my muscles as much as I could just like any other kid would do, but there was that gap of communication and there was nothing that I or anyone, no doctors anybody, could do about it. The muscles just atrophy.
It’s still a case of the more you use your muscles despite that communication gap in the nerve, you can still keep some of what you have. All you can do is slow the pace of atrophy, but you can’t stop it or reverse it.
Marissa: And there’s no current drug on the market that you could take that if you were to use some of the muscles and then take an additional medication it would slow the progression or is it just progression and no medication?
Blake: There are some medications, and I can’t tell you what they are called. Some of them have been around for maybe a few years; some of them have just come out; some of them are on the verge of coming out. These are treatments; they’re not so much cures and they don’t help a whole lot. I think maybe they help some. Like you say, they can slow the atrophy a bit more than somebody without the medication, but it’s not a huge significant different. That’s probably changing with every drug that comes out to market.
Marissa: One of the things that I was thinking when you were saying this is if it’s atrophying is it painful for you? Is this a physically painful condition as the fibers give out to the muscle and atrophies? Do you feel a physical pain living with the condition?
Blake: Well, Spinal Muscular Atrophy doesn’t, in and of itself, cause direct pain. There’s not an inherent pain. The problem is when you start not being able to move then you have problems like pressure points and your muscles, bad posture and whatnot and that can cause pain. Not using your bones enough can cause your bone density to not be as good. You can be more susceptible to falling and breaking your bones. There’s indirect discomfort and pain involved, but not inherently in SMA.
Marissa: I want to go back a little bit, because you mentioned your early days and your childhood. Can you take me back to what it was like living with SMA in your younger years? Maybe gloss over a little bit about junior high and high school and what it was like for you back then?
Blake: One thing I noticed that’s pretty big is when I was really young, elementary school age, it seemed like the kids were always… My teacher would appoint somebody to be Blake’s helper for the day or something along those lines and they seemed to really enjoy that kind of thing. But I noticed that as I got older, junior high and then into high school – I don’t want to say anything bad about my classmates; they would still help me if I needed it. But I started to have a little bit of a social separation, if you will.
It’s progressive, so the older I got, the slower, more behind and more things I couldn’t do – playing sports and whatever. I found it sometimes in middle school and high school a little bit harder. Students weren’t quite as excited about the idea of being my so-called helper for the day. I sort of relied on my teachers and a few close friends.
Marissa: As you were going through your junior high and high school years, I know that you also have a brother and your brother also has SMA. Was it a comfort to you to have someone supporting you? Did you guys get to spend a lot of time together as you were going through junior high and high school?
Blake: Yes, especially when I was in high school, because we went to a small private school that was actually kindergarten through twelfth grade. He may have still been in junior high when I was in high school. We’re three years apart. Since we went to that school, we were really near each other and we both had to stay in the after school program, because most of our friends would drive themselves home or catch a ride with somebody when school was out; whereas we had to stay there until 5:00pm until our mom picked us up.
We spent a lot of time together anyway, besides being in school. Actually, we spent a lot of time with little kids in after school care, which was kind of strange because then when school was in session, then I had all these little kid friends and people probably thought I was weird. But it was because I was in after school.
Marissa: Also, your brother having SMA, does he have the same type of SMA as you do as well?
Blake: I’m glad you asked me that question, because I didn’t clarify earlier that out of the four types I mentioned, me and my brother both have Type 2. For instance, Type 1 is still the same disease. There’s still the atrophy and the weakness, but in Type 1 these symptoms are almost immediate in their onset and really quick to progress. That’s where the children will get them and they might not make it to age two. That’s where the statistic comes that SMA is the number one genetic killer of children under two. It’s because of SMA Type 1. We both have Type 2, so ours is not as severe. Then Type 3 and Type 4 is adult onset.
Marissa: Give us a little bit of a “day in the life” living with SMA. Let’s talk about from when you’re getting up in the morning. What’s it like in your day living with SMA?
Blake: Basically, before I’m in my wheelchair at the beginning of the day, it’s pretty much just like being a ragdoll or a mannequin. Somebody else has to do everything for me. I guess things that probably people do routinely that they don’t think about that much like get up, use the bathroom, take a shower, brush your teeth, put your clothes on – I know guys in college that do all that in ten minutes and shoot out the door.
But it’s going to take me anywhere from an hour to two hours, depending on what I’ve got to do because somebody else has to do it for me and they have to use special equipment to transfer me around from the bathroom to the bed, etc. I’m really dependent on the caregiver until I get in my chair, and then I’m able to be a little more independent and drive myself around.
But anytime I want to do anything significant, somebody has to be there to help me. If I need to eat something, drink something, scratch my face even, then I’ve got to have somebody there. What I can do on my own is sit at a table and either operate my phone or operate my mouse for my computer. Other than that, anything major somebody has to be there to help me.
Marissa: Wow. One of the things that stood out when you were talking about this is you have to have a reliance on trust. You have to solely give trust to your caregiver. Are they called caregivers or there is a specific term?
Blake: There are a lot of terms. Caregiver is more general. I have what they call PCAs (Personal Care Attendants) that are paid through the state.
Marissa: So you have to really trust them because they’re pretty much helping you from the beginning, so you’re doing a lot of the training. You’re training them how to take care of you verbally, and then you’re just hoping that they carry out the rest of the care.
Blake: Well, I trust them. A lot of times it works out. You have to have the right person. The person has to care about their job. They can’t be somebody who’s just showing up and doing a minimal amount of work just to get a paycheck. They have to be somebody who has a drive to do a good job and cares about the person they’re taking care of.
I will admit that sometimes it’s backfired. I’ve had people that didn’t so much care about their job. All you can do there is move along and keep trying to find people.
Marissa: That’s an interesting aspect. One of the things that you and I both did is we had an opportunity to read the memoir “Life Rolls On” featuring Duane Hale living with Type 3 SMA. As we shared throughout the book, Duane expressed the progressive nature of the condition and he talks about, as you move through the memoir, the decline of his health. And he’s closer to, what, his 60s, Blake?
Blake: I think so.
Marissa: Yeah, he’s closer to his 60s. Hearing about that decline, did it trigger something in you? Did you think about your future and site some kind of fear or were you unsure?
Blake: It’s hard to say. I’ve had that feeling before, but not so much from the book because I have a more severe form than he does. In some ways, I would say him and I are almost at the same point of severity. He’s a lot older than me, but he may be a little farther. It’s hard to tell. It’s not a scientific comparison. I think I thought about the future in [15:08 inaudible].
For a long time, I didn’t even look up anything about SMA. I just went on with my life adapting and not really knowing what it was or what it was about until I was in college and I was like, “That’s it. I need to look this up and see what this is all about.” I had a vague idea, but I got really into it when I got into college and that was maybe for a few months.
It’s always in the back of my mind. Even when I was a little kid, I knew I had a progressive disease, but when I was in college and I looked it up, it scared me a little bit. But reading Duane’s book, I think what struck me the most about his book was not so much the decline in his health but I had more of a feeling of camaraderie maybe. I felt like I had somebody that I had things in common with.
So when I’m reading about the hard things that he was going through, as bad as it is to say, it’s almost like I was smiling. I would read something and he would be like, “And then I lost my ability…” I’m like, “I know, right?”
Marissa: Relatability. You just felt that comfort level.
Blake: It actually made me feel better in some way. It’s hard to describe.
Marissa: That’s interesting. I didn’t hear a lot of the “why me” moments in the book. Do you ever feel like you’re stumbling upon this “Why me? Why did this happen to me?” feeling?
Blake: Yeah, sometimes. There’s also I could’ve been born in some other country that’s not America. I might consider that I’m unlucky for being born with SMA, which I am pretty unlucky for being born with SMA, but I’m born in arguably the best nation in the world. I guess you can always think of somebody who has a worse situation than you.
I thought about what I would do if I didn’t have SMA. Would I do this or that? But I don’t really dwell on it. I don’t really think it’s fair to complain about it.
Marissa: One of the things I saw on the section of your bio that I didn’t read off, you talked about the importance of God and how you feel He’s blessed you and you’re really thankful for your family and friends. Do you ever think about what role spirituality has played in helping you move through this?
Blake: I don’t know if I’ve dwelled on it before, but it does matter and it does help. I don’t want to get too much into a discussion of religion versus different religion or Atheism, but it definitely helps feeling like there’s a higher purpose than life other than just what you can achieve with your money or popularity, or what you build or become or your legacy. I don’t really worry about those types of things. I don’t have that pressure to be the strongest and survival of the fittest mentality or anything.
Marissa: Spending a lot of time with you that we’ve spent recently, I recognize that you have a very good, strong self-awareness. I wanted to talk about employment and where you are at now. You recently graduated from college. Did you say about two years ago you graduated from college?
Blake: May 2009.
Marissa: And now you’re in that point of your life where you’re looking for employment. Let’s talk about that a little bit, about your recent stint as a happiness engineer with Automattic and what happened there and how SMA played a role and how it’s playing a role in your employment.
Blake: I applied for the job. I can’t remember when I first applied, but I applied twice. The first time I applied I never heard back. I did a generic job application e-mail. The reason I applied for Automattic was because I’m a huge WordPress fan. I’ve been using WordPress for a while and I enjoy making websites and I wanted to make WordPress themes and do that.
Before I got into Automattic, I looked at the happiness engineer as an entry level job at Automattic, which was a wrong assumption after I got done with it. Once I got in there and realized… They don’t look at things as entry level and you move up. It doesn’t work like that.
But at any rate, I applied for the happiness engineer once and I never heard anything. One day, I was just like, “I’m just going to apply again. Why not?” I don’t know if the listeners are familiar with Automattic, the company that makes WordPress.
Marissa: Go ahead and give them a little overview just in case we don’t have a lot of “webby,” “web-dev” people.
Blake: Automattic is the company that runs WordPress.com, which is a blogging network where you can sign up for a free blog. I would imagine most listeners have heard of WordPress.com, but just in case, you can create a free blog there and they make money off of a few little ads or off of upgrades that people purchase to make their blog better.
The actual WordPress software is available to be downloaded for free in open source to anyone, and that’s how I already was using WordPress. That’s how I found Automattic.
It turns out that the folks at Automattic are really into poetry, specifically Haiku. I want to say it was December of 2010 I decided to send another job application and I did my application in Haiku format, just to be silly or funny. For whatever reason, that actually got me a response. They offered me the trial period, which is what they do with all their happiness engineers – maybe all their employees, but at least all the happiness engineers.
It was pretty good. The job was a support position. When people have a problem with their blog, they fill out a “Contact” form and it goes to the happiness team and they must create happiness out of the situation by helping the users get over their problems. It was e-mail based.
As far as quality, I was doing a pretty good job, but my problem is that SMA keeps me from typing fast, especially when I’m just typing an e-mail or natural language as opposed to coding, because when you’re coding you can set up lots of shortcuts and whatnot. I won’t get into it. But my typing speed is really slow.
Marissa: So currently, to do the job you had to have – what is it called? – adaptive setup? Keyboard, mouse system set up for you to complete the job?
Blake: I actually did try several. I don’t know if you want me to go all into my setup.
Marissa: Sure! Go ahead.
Blake: I use an on-screen keyboard program for Mac called KeyStrokes. It pops a keyboard on your screen and you click the keys with your mouse and it helps you along by trying to predict what word you’re trying to type so that you hopefully don’t have to type the whole thing out. I use that with a combination of an iPhone app. Anybody who uses an iPhone or has seen one hopefully knows what I’m talking about. It’s a little iPhone-sized keyboard. It’s just a little small thing, so I can reach the whole thing with one finger and type and this app transmits it to my computer so it acts as a keyboard for my computer.
Then I have speech recognition software from Dragon. With the combination of those three things, I tried different methods to try to really get my typing speed up so I could answer more e-mails during a work period.
My trial lasted two months, and I got feedback on my quality and my team leader told me that she was looking at the quality of my e-mails and to not worry about how many e-mails I was sending out. I guess I didn’t take that advice very well.
Sometimes things would happen. WordPress.com would hit a little glitch and they’d have a ton of people write in, and you’d be trying to clear those out and my few little e-mails that I was doing just was not helping. It wasn’t really putting a dent into it and I wasn’t able to use my skills that I acquired in designing websites. I guess I was being able to use my skills with WordPress, but I felt like my main duty on the job was typing these e-mails and needing to type them as fast as possible.
I don’t want to make it sound like it’s a monotonous bad job or anything, because it was actually not. It wasn’t that bad, and the people that do it are really smart. It wasn’t like I was “I don’t want to do this stupid e-mail job,” because I totally loved it. I’ve always told myself that I didn’t want to put people in a situation – or I don’t want to put myself in a situation – where I’m employed but I’m not accomplishing the core of the job. And I felt like I wasn’t accomplishing the core of the job.
Before my two-month trial, I talked to my team leader and I told her everything I just told you and she was like, “I understand.” She wished me luck going forward and offered to be a reference for me for future applications. I left that hoping to get better and better at making WordPress sites.I’d like in the future to either have a job at a virtual design company or back at Automattic doing WordPress themes as theme wrangler.
Marissa: That’s pretty cool. Now that you’ve gone through this employment, you’re ready for the next phase now that you’ve stepped back from Automattic and you’re ready for that next journey of employment and trying to come into something still within web design and web development.
After you’ve gone through where you are, graduating recently, this encounter with Automattic, what would you say some of the lessons are that you want the listener to know, the lessons of the journey that you’ve learned up to this point and now that you’re ready to step into that next phase?
Blake: You know what? I’m probably still in the process of learning them right now. I can say that I’ve got to learn probably not to be too critical of myself. I could point to the e-mails and say objectively that I’m not giving up e-mails, but sometimes I still think had I stuck with it…
I saw the other people that were also on trial and they were there when I started or right before me or right after me and they were already way ahead of me as far as how many e-mails they were doing.
I may have not given myself enough credit to say maybe I’ll get faster or get better, but it might take me longer to get there. I’m definitely going to give myself a little more credit and give myself a little bit more leeway to see if I have to have more time.
Having SMA is all about adapting. I just have to remember that. If something doesn’t work out, instead of just being like, “Well, this isn’t to work out,” I should probably just really creatively think of ways to adapt to make it workout I guess.
Marissa: Being patient with yourself and allowing yourself to go through the process and take as much time as you need and not be so hard on yourself.
Blake: There are different types of people, but if you’re a person that’s critical… Of course, if you’re a designer, then that’s the curse. You’re always going to be your worst critic. It’s just a matter of not criticizing yourself too much. Give yourself credit where credit is due – that sort of thing. Pat yourself on the back every once in a while.
Marissa: That’s true. That’s a good lesson. I want people to know that you helped put together a site called www.StopSMA.org. Can you tell us a little bit about what you did there with the designs and how you got to put out that site?
Blake: I got a call one day. I was at home and I got a call from my local MDA office saying that some legislation had been passed.
Marissa: MDA meaning?
Blake: Muscular Dystrophy Association. Their nationwide thing – worldwide maybe. They have different groups; I don’t know how they’re exactly structured. There are local offices in all the states that they run fundraisers and do Muscular Dystrophy camps, which I used to go to when I was younger.
They called me and said there was this legislation that passed and they’re going to put research toward SMA because SMA is closest of a whole bunch of neuromuscular diseases to being cured, and the researches is real translational meaning it can be used for other types of diseases, so the government chose to put some resources into coming up with the cure.
They wanted me to come down to meet one of the Senators who signed it, so I went down there and it just so happened that I met this family there – the Horton family. Afterwards, I was talking to them – after we took pictures with the Senator and talked to him a little bit. They were saying that they had started this nonprofit Stop SMA. They told me just a little bit about it – not a ton.
I told them, “If you ever need a website, here’s my card.” I gave them my card. “I’d be happy to help you out.” So Jeff Horton, the president, calls me later. I’m really fuzzy on the dates. But he calls me later and we have lunch together. He’s like, “We have a Board of Directors and an Advisory Committee and I would like you to be on the Advisory Committee and help us with our website.”
I guess I haven’t said, but I live outside Jackson, Mississippi and that’s where the nonprofit is based, so it’s real easy for us to get together and go to meetings and stuff. So said, “Yeah, sure!”
After I took a look at their website, to their own credit they needed to get one up quickly so they used, what I would call “fly-by-night” services, not-so-good, do-it-yourself program.
Marissa: 24-hour put it up.
Blake: It got the information on there, but I was really looking forward to taking it and trying to really make the content engaging and giving it the attention it needed. I spent I want to say January and February of 2009 redesigning their website. It’s been the same ever since.
I talked to Jeff earlier and we’re going to be redesigning it again. Maybe by the time people hear this it’s not going to be the same. I’ve really enjoyed working for them because it’s given me the experience of it being a bigger site than making little silly hobbyist websites for myself or friends or something. This site gets more traffic and is more known about. It’s a pretty good experience.
And Jeff lets me pretty much do what I want to with it. I clear everything with everybody, but I have a lot of leeway in terms of the design and such. It’s been good for my experience.
Marissa: Yeah. And it gives you a sense of purpose. You have the condition, so you’re able to show through your skills to be able to bring attention to your own condition and bring awareness out there. That’s pretty incredible.
Blake: Yeah. I guess that’s the passion behind it. This is maybe a little tangent, but I was reading an article about design one time and it was about choosing the appropriate font. The designer was talking about how sometimes they choose fonts just because the meaning behind them, based on a font’s history or the name even. I think maybe there is something sort of cool about StopSMA being designed by somebody with SMA. It’s appropriate.
Marissa: I want to thank you so much, Blake, for sharing with us your story and giving us this access into your personal life living with SMA. We really appreciate coming on the show.
Blake: Thanks for having me.
Marissa: No problem. If you want to learn more about Blake, please check out his blog, www.ihatestairs.org. To learn more about SMA, please check out www.StopSMA.org. Thank you so much. Much love! Bye.