“It’s like the only sport I can do half of,” he joked.

“More than half, actually, because you spend most of your time sitting and waiting, which we’re really good at,” I replied.

We often make fun of our disability. We have an open policy with each other when it comes to disability matters. Even though we were joking, I understood Matt’s desire.

“There’s a certain beauty about just sitting there and holding the rod,” he continued.

Right, indeed. I think the beauty of it comes from just holding the rod, feeling it in your hand. It’s the physical connection. Increasingly, I lose my ability to physically connect with the world around me. Many of my connections are psychological. My world is in the mind. My computer has become an extension of myself.

“But you can’t live only in the mind,” Matt said as our conversation continued.

“You can. It just sucks,” I laughingly retorted.

He was right, though. Being able to reach out and grab something is an empowering feeling. There is a certain joy in the tangibility of things. Physical connections are part of our human nature. When fishing, it’s the grip of the rod and the pull of the fish. When shooting hoops, it’s the feeling of the ball’s momentum as you control it. When playing piano, it’s the rhythm underneath your fingers. When dating, it’s a touch on the arm or a spontaneous hug.

These are the world of the tangible. When we were babies, we explored this brave new world. Many people, I think, grow up to take this tangibility for granted. While I would never trade my mind for physical ability, I realize that there is a part of the world in which my participation is waning. Even with its capacity for thought, ideas, and emotion, the world of the mind can still be a cold, dark, and lonely place.

John Elway, screenshot of Tecmo Super Bowl

I use to be near the forefront of video gaming technology. When I was a kid I usually had a better video game setup than my friends. My first system was the NES. One of my first games, if not the first, was Super Mario Bros. Since my father was a big football fan, he taught me football basics when I was young. Our game was Tecmo Super Bowl on the NES. Perhaps you could say that was our way of playing football in the back yard.

Video games often filled a void in my young life. I loved sports and competition. And I especially loved winning. In 1998, I bought Madden NFL 99 for the N64. That marked the beginning of a long tradition. I have either bought or been given the annual edition of the Madden series for 11 straight years before this year. I loved it. The more the game evolved into an accurate simulation of football, the more I loved it.

But the day that I feared would come finally did. I lost the ability to use the controller. It did not happen overnight, but sometime between this blog’s origin in the summer of 2008 and now, I crossed the I-just-can’t-do-this-anymore threshold. It happened at about the same time that I lost the ability to type. I had sort of given up on playing Madden this year, so I didn’t buy the game. And I had yet to make the switch to the next generation of consoles. That changed this year when I got a Playstation 3 for Christmas along with Madden ’10. I had not played at all for months, and I knew that my left hand in particular was significantly weaker than it was last time I picked up a controller. To my dismay, I just couldn’t do it. And it really bothered me. I had a Playstation 3 and Madden ’10 right in front of me and I couldn’t play it. It’s not just another ability in a long line of abilities that I have lost because of my SMA. Okay, it is, but it’s more than that.

Losing my gross motor skills didn’t affect my general outlook on life because I had other abilities to fall back on. So even though I didn’t have the ability to shoot hoops on the basketball court, I could do other things. I enjoyed creative writing. I watched movies. And I could play Madden. And that was something I could do to have some competition with my friends.

But SMA took football from me. And it took writing (by making it slow and tedious). It keeps taking and taking. Its hunger is never filled nor its thirst quenched. I feel like I am going into the fourth quarter and SMA is up by two touchdowns.

Coincidentally, my favorite NFL player of all time is John Elway. I’m too young to fully appreciate him as he retired just after I began keeping up with sports in 1999. Nonetheless, I was interested in him in when I was young. In high school, I wrote a paper about his career.

As a rookie, he was ambitious, perhaps cocky. He boasted that he would win five Super Bowls during his career, earning a ring for each finger. You could call John Elway a comeback king. It’s debated as to weather he is the comeback king, but he led his team to victory in the final quarter of many games. One of those comebacks relied on Elway to lead the offense on a breathtaking 98-yard march known as “The Drive.”

I continue to adapt to worsening situations. The pages of this blog exhibit the various techniques I have used and considered for typing. I plan to experiment with some alternative game controllers, though many are out of my price range. Video games might seem an unimportant hobby to be so concerned about, but for me, it is a gateway into another world.

It’s time for my comeback.

Me receiving over-sized gift card from Best Buy.

Now that we’ve covered all of the important stuff, I’m going to take this opportunity to talk about the making of the video.

Making a video without a camera

When I talk about the making of “Meet Sue,” I always end up mentioning the fact that I can not even begin to lift and hold a camera. It’s true. Although I wanted to enter the contest, I struggled with the idea of how I would actually create the video. But then I remembered something. Something I saw on YouTube months before I knew of this contest. It was a rather nerdy video, but what I remembered about it was its emphasis on text. Mind you, this is the first time that I have revealed where exactly the inspiration for the format of the video came from. It came from this:

Click here to view the embedded video.

Although my text effects are nowhere near as cool as the ones in this video, you should be able understand where the format of the “Meet Sue” video came from. Using text and music was going to be my alternative. All I needed to do was to tell the story. And that’s when it got fun.

Having a disability without “having a disability”

If you tell a story about a fictional character, you create the character. The reader (or listener) of the story comes to know the character as you reveal the character’s, well, characteristics. So the goal of the story became to tell people about the Sue that they would see if they were not distracted with the fact that she has a disability. In other words, I told many things about Sue before mentioning that she has a disability.

It is a personal issue in many ways. Sue is me. And “Meet Sue” is a fantasy scenario where people get to know me before knowing that I have a disability. Maybe it is some unknown need to peel away my disability to see what people think. I don’t know. At this point, I’m just speculating. All I know is that you can tell when people don’t take you seriously, and sometimes it happens. Not because people are bad or want to suppress people with disabilities before they infiltrate society at all levels in a massive attempt to take over human civilization. It’s just a matter of feeling uncomfortable and unsure around people who are different than you. I sometimes feel uncomfortable around people who have different disabilities than I do. It happens.

So the moral of the story is that we all need to understand the similarities that connect us and appreciate the differences that make us unique. So all that being said, I leave you with…

Meet Sue

Click here to view the embedded video.

And here is a transcript:

Meet Sue.
Sue is an employee.
Sue is an employer.
Sue is a manager.
Sue is a mentor.
Sue is a teacher.
Sue is a writer.
Sue is a speaker.
Sue is smart.
Sue is funny :-)
Sue is exciting!
Sue is engaging.
Sue is a wife.
Sue is a mother.
Sue is a person with dreams.
Sue is a person with aspirations.
Sue is a person with a disability.
Sue is a person.

(at 60 seconds, video fades to credits)

Created by:

Blake Watson
www.blakewatson.com

Thanks to everyone who made this incredible experience possible.

Matt, here. Like my brother Blake who runs this blog, I have some trouble typing, although the word “trouble” may be kind of stretching it. I can use a regular laptop-sized keyboard, but it takes a little work to get my left arm on the table to be able to operate the keyboard. And after a while of holding my arm on the table, my hand starts going to sleep. Therefore, when I’m at home relaxing from a hard day’s work, or when I’m being lazy, I just use the mouse and an onscreen keyboard to type unless I’m writing a lengthy e-mail message or a treatise on things like … well, onscreen keyboards.

This is where the problem begins. Short story: Apple computers’ “Keyboard Viewer” sucks primordial fluid. Long story: After reading countless news articles on how Twitter will change our lives forever, I’m sitting at home making def tweets and checkin’ the latest on Facebook, when suddenly I have to type a capital letter (because I’m proper like that and haven’t yet fallen into the habit of typing everything lowercase). And not only do I need to type a capital letter, but I also have to type @sexxybbaby4x92. However, the modifier keys (e.g. caps lock, shift, control, command, etc.) on Mac’s Keyboard Viewer do not stick when they are clicked. That means you can’t click on “shift” then on “2″ to write the @ symbol or “A” to write a capital A. What I usually end up doing is holding down the shift button with my righthand index finger while I aim the cursor and click the mouse with my middle finger, a stunt that has taken me months to master.

But yesterday, I got sick and tired of it all, and I asked Blake where on the Internet I could download Keystrokes, which is what he uses. He was like, “Just google it, but it costs like 300 bucks. Get Voc Rehab to pay for it.” “Screw that,” I said. I’m not going to pay $300 just to be able to push the dang shift key. Windows comes with a free Onscreen Keyboard that works perfectly. Surely Mac wouldn’t let themselves get beat out on something so simple as an onscreen keyboard with a functioning shift key. Surely there was a way to make the infamous Keyboard viewer work. Aha! Sticky keys. Just turn sticky keys on and it will work.

Nope. OK let’s see. Aha! Just hack the system. Well, two problems here: 1) I don’t know how to hack the system even with good directions, and 2) it still doesn’t work that well for people who have tried it. For instance, on the Apple discussion page, one disgruntled customer “even tried trashing ~/Library/Preferences/com.apple.KeyboardViewerServer.plist and ~/Library/Preferences/com.apple.universalaccess.plist, but these were also no help at all.” Whatever that means, but you get the point.

OK, I’m starting to get tired at this point. I begin to slowly accept defeat. As one blog commentor said on The Apple Blog, “Apple just informed me that I’m the proud owner of a useless Macbook–there is no fi[x] for the shift problem on the onscreen keyboard.” So many others got the same response from Apple, with one person even claiming Apple told her they would fix it on the next version but never did.

So then I’m like, “Well that sucks. Looks like I’m going to have to search for some kind of freeware point-and-click keyboard program.” Nope, they all cost money, and I’m not paying money when it is my Windows-given right to be able to operate the onscreen keyboard shift key for free, dadgumit.

In a conversation with my brother, I found out the key difference between the Windows Onscreen Keyboard and the Apple Keyboard Viewer. Windows means for its keyboard to function as an accessibility feature. That is, it is meant specifically for people with disabilities who have trouble typing. It is even listed under “Accessibiity.” However, the Keyboard Viewer’s primary funtion is to be able to find the hidden keys. In other words, if I hold down shift, I can bring up the Keyboard Viewer and see that shift+2 would be @ or that option+N would be the ˜ sign or that shift+option+? would be the backwards question mark (¿) that comes in so handy when I’m typing my Spanish essays. So, the Keyboard Viewer is not really meant as an onscreen keyboard, and indeed it’s not even listed under the computer’s “Universal Access” section. There is another section where you find it (“International”).

“That’s stupid,” I said. And for good reason. Apple has lied to me! I say this because in the “Accessibility” section of their Web site under “Physical & Motor Skills,” it says the following:

Onscreen Keyboard

If you find it easier to use a pointing device than a keyboard, you can use the Keyboard Viewer to enter text. You’ll find this onscreen keyboard in the International pane of System Preferences. Keyboard Viewer floats above other applications (so you can’t misplace it). It can be displayed small or big, and, though you “type” with a mouse or other pointing device, it otherwise works just like a physical keyboard.

LIES!!! It is not a real onscreen keyboard and it does not work just like a physical keyboard.

The real issue that bothers me is that many people all over the Internet have complained to Apple about this and Apple just won’t fix it. It’s so utterly simple. Just make the modifier keys stick on the Keyboard Viewer. Simple, simple, simple. Yet Apple either makes empty promises about fixing it or refers people to outside software they have to buy. Come on, Mac. You’re gonna let PC be the disabled-friendly computer? The Keyboard Viewer may seem like a small feature no one really cares about, but hundreds of people with disabilities who have trouble typing have found the Windows Onscreen Keyboard extremely helpful, especially when they are at public computers in places like libraries, where they haven’t installed $300 software. Yet, when we go up to a public Mac computer with a physical keyboard that may be too big for us to handle, we have to rely on the Keyboard Viewer as the next best thing to an authentic onscreen keyboard. C’mon.

If you’re dying to know, the only free thing I have found on the Internet is something called Kiiboard that looks like this on my computer screen:

Kiiboard

Yeah, it’s huge, and you can’t resize it either. And don’t make the mistake of calling this an onscreen keyboard. As the site I linked to says, it was “originally designed for use with the Wii Remote IR mouse driver for Mac OS X.”

If you happened to have found any other better free alternatives, please let me know. Thanks.

A big thing for me right now is keeping tabs on my weight. Or at least that’s what they tell me. Apparently, if you can’t move (e.g., you have SMA), you shouldn’t eat as much as other people do. Makes sense, but it is difficult to put into practice, especially considering that I live in the fattest state in America. These were discussion points I knew would come up as I signed in and took my place in the waiting room at the Blair E. Batson Hospital for Children.

It was my annual check-up appointment with Dr. Moll, a specialist out of the handful I visit each year. On this occasion, it turns out Dr. Moll was on vacation. So after sitting in the waiting room for about two hours, I was escorted to a back room to see Dr. Torchinsky, who was seeing Dr. Moll’s patients for the day. A few more minutes of waiting and a soft-spoken, yet animated doctor with a Russian accent came into the room baring my chart. Though the nurse who brought me back kept saying “Dr. T” would be difficult to understand, I found him to be easy to understand, given the accent, and I thought his personality quite delightful.

We began by looking at the results of my blood tests from my last check-up (which I was assuming were fine since they didn’t bother giving them to me earlier). Dr. Torchinsky took me item by item explaining each test and telling me whether I “passed” or “failed.” Fortunately, I passed all the tests. I’m surprisingly healthy for someone living in the South who doesn’t like most veggies and gets minimal physical activity. But the issue of my weight finally reared it’s ugly head. A lecture I have heard so many times before transpired. Keeping my weight down was of utmost importance. Did I drink soft drinks like Coke or my beloved Dr. Pepper? Sometimes. Well I shouldn’t because those drinks contain so much sugar that he considers them comparable to medicine. I should see a nutritionist to learn about all the good foods that exist. Bla bla bla bla.

I know.

But knowing and doing are two different things. When you can’t prepare food for yourself, you rely on others to prepare it for you. Sometimes that means Grandma makes fried chicken, mashed potatoes (with extra butter and milk cooked right in of course), corn, biscuits, and apple pie. Sometimes it means Mom is tired and Sonic will prepare our food tonight. Sometimes it means an attendant will microwave something for me. Rarely does it involve eating a planned, healthy, and nutritious meal. Not to mention the foods that are easy for me to eat are finger-foods, which are usually fried or otherwise unhealthy. Oh, and I’m a picky eater. And to top it all off, many of the vegetables that I taught myself to like (e.g., green beans) are on the avoid list for people with calcium oxalate kidney stones, such as myself.

So, yes, Dr. Torchinsky and all the doctors before him are right. I should follow his recommendations, as should the other 68% of Mississippians. But I’m going to have to do it in baby steps, especially as I smell the coconut rice pudding that my grandma is concocting in the kitchen as I write this. So I’m limiting myself to two 12oz. Dr. Peppers a week, not counting any occasions in which we go out to eat. That’s an issue I’ll deal with separately (but you can’t just blindly drink tap water in Jackson). And I’m going to begin the preliminary stages of scheduling a visit with a nutritionist, which means I’ll tell my mom that I should see a nutrionist. Come to think of it, I’ve already mentioned it once, but it won’t be taken seriously until I mention it a few more times. Not because my mom doesn’t want me to be healthy, but because she won’t think I’m serious unless I keep talking about it.

So, anyone know of some tasty, healthy foods?

On a quite ordinary night, I happened to see this compelling performance by Hugh Laurie playing Dr. Gregory House. It portrayed the way I felt with remarkable accuracy. (The video will take a few seconds to start playing)

I know you’re suppose to keep your chin up and not feel sorry for yourself, but sometimes I feel like I need to dwell on the difficulties. They’re part of the story. Keep reading the story long enough, and you will find the happy ending.

I’m skipping the pleasantries today. Here’s the website: thetroublewithjerry.net. Go look at it now. Seriously, I’ll wait. Just don’t forget to come back!

Back already? I’m not surprised. It doesn’t take long to understand the message: Jerry Lewis is not deserving of a humanitarian award, such as the one he was given at the Oscars Sunday.

The Trouble with Jerry campaign presents many quotes from Jerry Lewis himself, which its members claim are bigoted and pitiful. The TWJ supporters claim that Jerry’s fundraising work with MDA, such as the annual telethon, spreads negative stereotypes about people with disabilities.

Click here to view the embedded video.

Many of the quotes they use come from an article Jerry Lewis wrote titled “If I Had Muscular Dystrophy,” that was published in the September 2, 1990 issue of Parade magazine. As the title suggests, Jerry takes a first-person look at the challenges faced by a child with muscular dystrophy.

While I enjoyed the article, I understand where the disability activists are coming from. When Jerry refers to the wheelchair as “that steel imprisonment that long has been deemed the dystrophic child’s plight,” I can understand why somebody might take issue with that. On the other hand, I can see where Jerry is coming from. He’s trying to raise some money to help kids who have a disease that is very often fatal. It may not be the most tactful way to put it, but I can attest that my wheelchair has, at times, felt like a steel imprisonment. As difficult as some might think it to be, it is important to understand the generational gap that exists here. As a young person in college living in a time where technology can help people with disabilities excel further than they ever have been able to before, I have the vigor to succeed. To overcome the obstacles in my path. A positive attitude about my disability and about who I am. Even so, the way Jerry articulates some of the challenges that a young person with muscular dystrophy faces is so real to me that I almost can’t fathom that a person without muscular dystrophy wrote the article. Let’s have a look at some of these.

Let’s start with what, for most of us, is a simple number of tasks just to get into the mainstream of everyday living … like brushing our teeth, taking a shower, cutting our toenails, filing our fingernails, combing our hair, shaving, using makeup. All of that isn’t even the tip of the iceberg. Example: Bathrooms aren’t built in normal homes to accommodate a wheelchair (oh, in some cases people with money will rebuild and makes things easier for the child and themselves). Just getting through the bathroom door isn’t all that’s involved. Space is needed for a chair to turn, or for a child to be carried and dealt with out of the chair. It’s still only the early hours of the day and already I am beginning to feel trapped and suffocated trying to visit that bathroom.

To me, this seems like a fairly accurate description of a typical morning. It takes me several hours to get up and get ready for class in the morning, and by the time I do, I sometimes feel quite tired. Whether it’s trying to get my patient lift into the shower without roughing myself up or getting out of the shower quick enough to keep from freezing to death, the morning routine has its fair share of challenges.

Now it’s time for breakfast. If I live in a one-floor dwelling, it’s not all that tough getting from Point A to Point B. But there are situations where you have to be carried down a flight of stairs with the wheelchair right be hind. Just the indignity of having to be carried (especially when you’re 12 or 13) is devastating. I know that if I don’t use that chair I will be carried … So you learn to live with that, or at least you make every effort to try to feel that “this, too, shall pass.” Although the conscious mind works in many cases, the subconscious mind knows the truth and reacts on it … So the pain never leaves.

One’s first reaction to the language used in this section (e.g., “indignity,” “devastating”) might be to feel that it is condemning to the kid with MD. I don’t get that from this section, though. I think he is touching on several things here. One of them is that people stare and that society puts a stigma on people with disabilities. That’s why having to be carried is an indignity and is devastating. It’s similar to when I am in public and I need to use the restroom. If I’m with my mom than I only have one option: the women’s restroom. There’s just no way mom’s going to go into the men’s restroom and risk seeing something that she doesn’t want to. So I go to the women’s restroom. I usually must travel to the back of the room to get to the wheelchair accessible stall. Past all the little girls who are wondering why I’m in there, past the girls my age who I, by the very nature of being a male, feel the need to impress. It’s like a march of shame. Don’t get me wrong. It’s not like I get really down and out about having to go in the women’s restroom. But it’s not something I like to do, and it definitely doesn’t make me feel dignified.

I think another point that Jerry was getting at, that many might not be aware of here, is the knowledge of the progressiveness of muscular dystrophy. While it’s not the same as having a car accident and suddenly going from being disability-free to being paralyzed from the neck down, muscular dystrophy is similar in some ways. It gives you the knowledge of what it’s like to be able to do some things one moment, and then it strips those abilities away from you. It is a slow continual process. When Jerry says “the subconscious mind knows the truth,” I know what he is talking about. In some ways, I sort of have to forget about my disability — at least the part about it being fatal (People with SMA Type 2 usually live close to a normal lifespan, although it varies. People with SMA Type 1 many times do not make it past the age of two or three.)

In his article, Jerry continues to explain various scenarios that people with muscular dystrophy might face. He’s not trying to reduce them down to a pointless bunch of weaklings with a meaningless existence. He’s simply explaining the challenges of a kid who has muscular dystrophy from a first person point of view. And then we come to this controversial paragraph.

I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are, and I bet I’m in the majority. I’d like to play basketball like normal, healthy, vital, and energetic people. I really don’t want the substitute. I just can’t half-do anything — either it’s all the way, or forget it. That’s a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.

I may be a full human being in my heart and soul, yet I am still half a person, and I know I’ll do well if I keep my priorities in order.

The quote that is the most infamous here and one that is presented by The Trouble With Jerry is “When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things half way. I just have to learn to try to be good at being a half a person… and get on with my life.” I suppose that without any context to help explain the meaning of this quote and a misunderstanding of where Jerry is coming from, it would seem to be a horrible thing to say. So where is Jerry coming from? He is explaining the effects of muscular dystrophy from a first person view. He is not making statements about people with muscular dystrophy from his own point of view. He is not telling them that they are half a person. In fact, in context we can see he also said “I may be a full human being in my heart and soul, yet I am still have a person, and I know I’ll do well if I keep my priorities in order.” Is this a contradiction? No! In context he is talking about someone with muscular dystrophy wanting to play sports. His choice to use the word “cripples” is understandable in the first person. I know people in the disability blogosphere who use this kind of language amongst themselves all the time. In context, he wants to play basketball like anyone else would but he realizes he has to substitute. “I just can’t half-do anything — either it’s all the way, or forget it,” he explains. I know what this feels like.

When I was very young, I played tee ball. The teams were made up of kids with different disabilities and we were all assigned a buddy who would stay by our side and help us play. Though I did enjoy it for the most part, I did realize I was playing a sport for people like me. I knew I wasn’t playing the kind of sport that my friends at school would play. Our games always ended in ties. Basically, everybody got a chance to hit the ball at least twice and go around the bases. Now, I know there are plenty of very competitive sports that people with disabilities play, but I’m commenting on my own experience as a child. I got to the point where I was participating just to be out at the park with my mom, brother, and friends. I wasn’t there for the game because there was really no game. I can understand wanting to either do something or not do it — and not halfway doing it. And that’s when Jerry’s controversial quote makes a lot more sense than first thought. Because I shouldn’t live my life, as a child especially, not playing sports and not having fun because of my disability. I realized that I have limitations (i.e., my life is half) and that I have to do things that are within my limitations (i.e., do things halfway). I have to accept things and have a positive attitude because, if I don’t, I’ll be a frustrated child not having any fun. So I decide to work with my limitations, with my disability, with the progression, and I do it with a determination that perhaps only a naïve child could have (i.e., I learn to be good at being half a person, and I get on with my life). And that’s what makes me a “full human being in my heart and soul.”

Jerry is wrestling with feelings that I know to be all too true. Now I know some of the protesters had muscular dystrophy and this article did not seem to relate to them. I can’t speak for them. But when I read it upon hearing about this controversy, I thought “wow, this guy really does understand.” He has articulated feelings that I know I’ve had before but that I cannot explain in words. So maybe to some it comes off as a pathetic article written by a celebrity who could care less about the rights of people with disabilities. But I think that idea could not be more wrong.

But I always have the feeling in the pit of my stomach that I want to scream out “Help!” Or, “See what has happened to me!” Or, “Is anyone watching?” But those screams are usually muffled by the inner voice that tells me what to do and when, and tells me softly and strongly: “Be still … Hush … Drive quietly … Try to make as few waves as possible.”

I have never really found out why, when someone is dealt a bad hand, they immediately feel inferior and out of touch with the mainstream of life — when in fact we’re more productive, more educated and more apt the excel than most of the fortunate people who are either indifferent of just don’t care. I wish they knew that one day they could find themselves just as I am … a statistic that breathes and lives and hurts and tries to make it through life without bothering too many people along the way.

It looks to me like he does understand. He understands that society places obstacles in our path. He realizes that, in fact, we are capable. Sometimes more capable. Jerry Lewis is a person who understands. And not just that, but he is a person who is doing something about it. No, he’s not a disability rights activist pushing for things like universal access. He is taking a different focus, which is not necessarily wrong. He’s trying to get enough money together to pay for a freaking cure! And I, for one, shout at the top of my lungs (which isn’t very high) “More power to you, Jerry!” I don’t want to get into the whole medical versus social or cure versus no cure debate. I’m just going to state matter-of-factly that if I don’t get a cure, this thing is probably going to kill me. And I don’t think anybody can question my desire for a cure or the possibility that it could actually happen. It is not something unreachable. I’m not putting my life on hold, but that doesn’t mean I’ve forgotten about it altogether.

I know people have their gripes about the Muscular Dystrophy Association, but without it, I would not be the person I am today. Whether it be the Summer camps, the equipment, or the people I’ve met over the years, MDA has had a huge impact on my life.

So am I upset about Jerry Lewis getting a humanitarian award at the Oscars? Of course not. No matter what people are saying about him, he has helped a lot of children and he understands their plight. If that is not a noble endeavor, then what is?

Those are my thoughts about this whole controversy as of now. I will conclude by answering the question that was framed to me once by an attendant of mine. “Who’s your daddy, Blake?”

Jerry is.

After a not all that exciting week, my long-awaited software arrived yesterday. I’ve been playing around with MacSpeech Dictate, which is working better than I expected, and I’m glad to get my hands on the full version of KeyStrokes. Transitioning to keyboard-less computer use has not been easy so far. With KeyStrokes, the on-screen keyboard, I feel like I’m moving in slow motion. And with MacSpeech Dictate, the voice recognition software, I feel like I don’t have any control. This whole thing is a work-in-progress, I guess.

I’m not feeling very motivated. In anything.

I don’t think I can take much more school. I know that I’ll eat my words later, but I’m getting burned out. I’m ready to earn moolah, and not always have homework hanging over my head. I want to get back into Web design. I want to do something that matters. My recent inability to type is not the only cause for all of these feelings, it’s just the straw that broke the camel’s back.

Anyway, sorry for the crappy post. Better luck next time.

This semester is my last. If I can get through my last seven hours, I will be graduating with an MBA in May. The choice is where I want to go after that. As it stands now, I see that I have two options. The first is to go back to Jackson and apply for a job at our Apple Retail Store or Cellular South, and live at home. The second is to get a job on campus at Mississippi State University and live in an apartment right next to campus. There are pros and cons to both.

My primary reason for staying on campus is my level of independence. It is much greater here on campus than it is at home. For example, I can leave my apartment anytime I want and go to the bookstore or library or the coffee shop—I’m connected by sidewalk. Although I could make more money in Jackson (well, the surrounding areas), I would lose my level of independence, which I have come to enjoy over the past six years.

Another reason to stay on campus is that my potential job would be in a Web-related field (Web Content Producer). I believe I would enjoy that more than an IT or sales job. I’ve applied for the job on campus, with no word back yet. If I were offered the job, I would have to do somewhat of a feasibility analysis to make sure I could get the required attendant care. Also in the mix is the idea of getting a Ph.D. If I work on campus, I can take six tuition-free hours a semester. That’s not a bad deal.

The only problem in my plan to stay on campus (actually it may be one of several) is that, at its core is the assumption that I would be offered the Web Content Producer job. So right now, I feel like everything is on hold. I imagine what will happen is that I won’t hear anything back for a while, and I’ll have to make a decision with incomplete information.

Thinking about it now, I guess there is a third option. There’s always the off chance that Vocational Rehabilitation would pay for me to get a PhD. I’m not really sure why, the taxpayers of Mississippi have already invested a lot in me. I almost can’t stomach requesting for even more.

To add to the uncertainty, I have a friend who uses a power wheelchair and has been trying to get into an accessible apartment for a while now. She has more or less been waiting for me to graduate. She jokes about me needing to go ahead and graduate and not stay around, but I’m not afraid of her evicting me any time soon. But I don’t think that I can live in this apartment unless I knew that she would be able to get another accessible apartment. Of course, I don’t know at this moment if I’m even going to be in this apartment on campus. Unless I’m a student, I must live off-campus (I think).

So this is the craziness that I am facing right now. It’s a free-for-all battle between my hopes, my wants, my potential, my opportunities, my disability, bureaucracy, and reality.

To combat the invasion of atrophy in my hands, I’m looking into some adaptive technology. The plan is to try a combination of speech recognition and on-screen keyboard software. Since I’m using a Mac, I can’t use Dragon NaturallySpeaking, the popular PC speech recognition software. But I can use a spin-off for Mac called MacSpeech Dictate. It’s built using the Dragon engine. It does lack some of the features of Dragon NaturallySpeaking, but the core functions are there.

I’m thinking of using an on-screen keyboard called KeyStrokes. It’s got some nice features, such as predictive text.  In fact, I’m using it now. It’s a bit slow, but we’ll see how it goes.

Anyway, I’m going to bed.

Cheers.