I hate stairs   In case of a fire, use the elevator. Quickly.

I’m finally getting around to posting the videos from our power soccer practice. I put three different clips in one video, complete with narration. It shows what I think was our best practice to date (I missed last practice, shame on me). We learned a little strategy about positioning on the court. The previously mentioned 2 On 1 Rule was properly enforced, keeping us from getting all of our chairs jammed up together.

It was a fun practice. It made me think about the coming games we will play this season. I’m beginning to think we have something. We just need to tap into it some more.

Whether it be at a hospital, a doctor’s office, or in the comfort of my own home, I often find myself relying on others to physically transfer, lift, or otherwise assist me in some way. And it usually works out fine. But when it doesn’t, the consequences are not good at all.

I had an attendant about ten years ago who insisted on rolling me so far over in my bed that most of my weight was on her and I was staring at a hard floor below. My objection to this practice was completely ignored. Nothing I said mattered. It was like screaming at a brick wall. Obviously, she was mistaking my comments as “Don’t listen to me, I’m just scared.” I don’t know. But I can understand her actions then more than I can others’ now. After all, I was kid then (I’ve since moved up to “college kid” status).

I run into this problem when I’m in the hospital. Nurses, aids, and other staff will huddle around me, preparing to transfer me to a bed, table, etc. I remember a time I needed to be transferred for a CT scan. I explained that I should park my chair at the head of the table. It would take two people, one on my left and right, to pick me up using the sling I was sitting on. One person would hold my legs. Then we would lift, move down slightly from the chair to the table, and then put me down. Like this:

The proposed transfer plan

Of course, this plan would not make it to implementation. Instead, groupthink happened. The Group decided I should park next to the table, as close as I could get. That would mean that one person would lean over the table to get one side, while the other person would need to lean over my chair as I transferred. Like this:

The Group Plan in Theory

As you can see, it would take a good bit of strength to lift this nonsensical, 178-pound patient. I should also mention that my chair was a power chair, and the above plan would require me to pass over my control, which was on my right (left in the image). This plan didn’t even sound good in theory. And as my essentric stats instructor once said, “The gap between practice and theory is greater in practice than it is in theory.”

But not even the Group-supported plan above would make it to implementation. Instead something happenned. The plan evolved, making it a worse plan, and proving that the Theory of Evolution is bogus (cheap cut). Oh, and speaking of gaps, there’s one in between the chair and the table. I know this is true because in mid-transfer, the lean-over-and-lift factor kicked in and I found myself with one cheek on the table, and one on my chair. Not comfortable. So implementation looked something like this:

The Group Plan implemented

So the moral of the story is this.

LISTEN TO ME! I DON’T WANT TO DIE!

I’m getting over an upper respitory infection. It was not the best timing, considering my meeting and future interview with Apple. I’ve had a rather hard time coughing up the secretions. Many of the parents who have commented on my previous posts will be familiar with this problem. Kids with SMA type 1 use several pieces of equipment, on a daily routine, to keep their lungs clear. I have type 2 and I’m usually pretty clear unless I get sick.

I’ve been sick for the past three days. My cough assist machine is at my apartment at MSU so it’s not helping me any since I’m in Jackson for the summer. So I had to adapt. I came up with my own, stunt-devil version of coughing. Odd, but it works.

Today, I went to a hiring seminar hosted by Apple. If you haven’t yet heard the news, Mississippi is getting an Apple Retail Store at the Renaissance at Colony Park in Ridgeland. This is a huge, huge opportunity for me. I found out that they have a group focused on serving small to medium-sized businesses. I was immediately interested in that role, given my background in BIS and my MBA-in-progress.

I will hopefully be interviewed later this week by the manager. The only thing I’m worried about is my one year delay (school) until I’m available. And, well, there is one more thing that is in the back of my mind.

It’s what this blog is about. It’s why I started this blog. Yep, you guessed it. My disability. Don’t worry about bringing out those violins yet. I’m just saying. It’s there.

It hasn’t really stopped me yet. But school is different. They’re getting paid. But when it comes to the workforce, especially when the economy isn’t great, businesses are going to be really choosy. Because they’re spending money. I’m not saying that my disability in and of itself will rule me out, but it would probably be an unintentional, unconscious factor. Like maybe a lack a body language. Or communication that isn’t engaging. Or the fact that I wear no shoes (but really nice socks!!).

I’m going to be honest. I am a little apprehensive about how customers might respond. The last thing I would want is for a potential customer to feel awkward. If I’m having these thoughts, it would seem that the manager/staffer at Apple could have these thoughts, in some form or another.

Like I said though. These are in the back of my mind. You can believe I’m going to be as confident as ever in the interview. I’m not going to let this turn into a self-fulfilling prophecy of negativity. I want to work at Apple far too much to let that happen. But these are things I have thought about.

We were promised that the hiring process would not be “drug out.” The store is going to opening near the end of August, and they will need a team of about 30 by then.

So, I should know more soon. I’ll keep you posted. There’s a chance I won’t make the cut, but I’m planning for the best. Long live Appleheads!

Lloyd: What are the chances of a guy like you and a girl like me… ending up together?

Mary: Well, that’s pretty difficult to say.

Lloyd: Hit me with it! I’ve come a long way to see you, Mary. The least you can do is level with me. What are my chances?

Mary: Not good.

Lloyd: You mean, not good like one out of a hundred?

Mary: I’d say more like one out of a million.

[pause]

Lloyd: So you’re telling me there’s a chance!

Or at least now they can be.

I’m going to do some market testing with a product idea that I hope will not destroy the readership this blog is suppose to serve. About a month ago, my brother and I stumbled upon an idea. It was funny. To us. Then we thought, “There’s millions of people like us.” Could we sell our idea? It was so crazy it just might work. We brainstormed for a couple of hours and came up with about fifteen to twenty funny, edgy lines about disability to be printed on t-shirts. We put them through our own critiques and narrowed the list to about nine. We want to pick about three to print, and then we’ll go from there.

So this is a good time for my disclaimer. It’s possible that some of our shirt ideas could be offensive to some people. We mean the best. Really. And a lot of these shirts could potentially be ice-breakers to help get past social barriers. But we want to know which ones will cause laughing-induced snorts and which ones would best be put to rest. So if one does offend you, let me know. If you can’t continue reading because you’re laughing to hard, wait a second, take a deep breath, and let me know which one was awesome.

Okay. Now that we’ve put that behind us, let us continue. I’m going to give these images title attributes, so I think screen readers will be okay. Someone let me know if I’m wrong there and need to type each caption in the text.

Since I’m a little biased, many of these shirts are meant for wheelchair users (although there is a good one for people who are blind). So I find it helpful to imagine an unsuspecting able-body person and a disabled person (probably in a wheelchair) approaching each other on the sidewalk. The disabled person is wearing a shirt that says:

Now you know where that silly blog name came from. :-)

Great t-shirt ideas? Or greatest t-shirt ideas? Let me know in the comments, would ya?

I’ve been a little secretive about myself. I didn’t do it intentionally, I was just procrastinating writing the two new sections you should notice in the menu bar above. I’ve written about myself and my disability. I will likely add to these pages as I find it appropriate.

In short, I’m a graduate student at Mississippi State University studying business. I did my undergraduate work in Business Information Systems. I’m a part-time, freelance Web designer for now.

I have Spinal Muscular Atrophy type II, a nueromuscular disease.

That’s all for this update. I encourage you to check out the new pages if you’re interested.

A couple of ideas have been floating around in my head for a few days now. I recently received a comment on my post (well, my brother’s) about Joseph Smith. The commenter is the mother of two sons, one of which is three and a half years old and has Spinal Muscular Atrophy (SMA) type 1, the same disease that Joseph has. She has posted a lot of amazing resources, photos, and videos. It has inspired me to write a piece on SMA. I will be doing some reading on that, so expect to see that up soon. I’m also planning to update you on the progress our power soccer team is making. I’m waiting to get my hands on some video that was recorded last practice.

What I am going to share with you now is the funny experience I had at an optometry clinic today. My brother and I are usually together, so we book doctor appointments in back-to-back time slots. We loaded up in the van this morning and headed to our 11 and 11:30 appointments. We checked in, signed some paperwork, then we waited.

After a few minutes, someone came from the back and called, “Watson.” “Which one?” we replied. That’s when they noticed there were two of us and we both used power chairs. Then an episode of mass confusion ensued. “Umm… Thomas… uh… your room isn’t ready yet, it’ll be one moment.” I assume there was only one exam room that was accessible. Finally, my brother (Thomas, we call him “Matt,” his shortened middle name) gets the go ahead to go back.

I continued to wait for about 15 minutes. Then another lady came from the back and called, “Watson.” Although I was sitting right in front of her, she was scanning the room, looking for a Mr. Watson. My chair clicked when I began to move toward her, and she realized I was Mr. Watson. She looked confused. And the closer I got the more perplexed and frightened her expression became. I’m not kidding. It was a face of utter doom. She looked to a lady behind the counter. “Doesn’t he…,” her voice trailed off and she looked back at me, “Your room isn’t ready yet, we’re waiting on your room to free up.”

Fancy service. A clinic that let’s you know your room isn’t ready yet. :-)

Note: The following article was written by Matt Watson, my brother, as an assignment for an interviewing class at Mississippi State University. Matt and the Smith family have given me permission to post the article.

Joseph Bennett Smith is nearing his second birthday, which promises to be festive, happy, emotional and for many, nothing less than miraculous.

At the age of 20 months, Joseph has already influenced thousands of people, from Mississippi to Ohio. His example helped save the lives of at least two people. For his six siblings, he serves as a perfect playmate. For medical specialists in Mississippi, you might say he has widened an entire field of knowledge for treating a disease, his disease.

Joseph was born with spinal muscular atrophy type I, one of the severest forms of muscular dystrophy. The disease weakens all of the muscles in the body and prevents walking, talking, swallowing and many other daily physical activities.

He lays on his back on the carpet floor of the family’s house, with his head turned sideways, eyes widening and looking every direction for someone to play with. His father believes he would be a “little running-around-playing person” if he could walk.

Joseph undergoes a rigorous morning routine to maintain his health. His parents, Bill and Melissa, spend much of the morning bringing up Joseph’s respiratory secretions to avoid the all-too-familiar threat pneumonia presents to infants with SMA I.

“He got pneumonia; he nearly died,” Bill recalled. “I’ve seen on movies and heard on documentaries and things people talking about hearing the death rattle, and I mean we heard that. We heard that sound. It’s a distinct sound.”

His brothers and sisters, aged 3 to 13, have learned how to use the suction machine that brings up the secretions in Joseph’s nose and throat. Between making funny faces, waving toys in the air and playing a myriad of other games with Joseph, the children casually grab the machine to attend to him.

It was during the Christmas season when the family first realized something was different with Joseph, five weeks after his birth. The first doctor to diagnose him couldn’t honestly give the family any hope. He told them the child was going to die in about three months, the fate of many SMA I patients.

For a while, the parents did not accept the diagnosis. They talked to friends and attributed Joseph’s symptoms to a possible case of botulism. Bill recalls trying everything to “fix” the situation and increase Joseph’s strength.

For Melissa, the fight was deeply spiritual. She remembers vividly the night Joseph was diagnosed, the night she believes she encountered the devil.

“I could feel the breath from [the devil’s] nostrils on my face,” she recalled. “I heard a voice saying, ‘Where is your God now?’”

Even after the tests that confirmed Joseph’s diagnosis were completed, Bill and Melissa kept to their hardheaded mentality, strengthened by a solid conviction that only God could decide their child’s fate. Since the day she says she realized Joseph was God’s child because God created him, Melissa says she has put everything into God’s hands.

Her husband says going through Joseph’s diagnosis and being there at times when Joseph almost died were the most intense times of his life. But he has always been very pragmatic about his son’s health.

“We’ve gone through doctors at the ICU tell us to basically get ready for him to die, because he was looking like that’s where he was headed, and to decide who we wanted in the room with us,” he said. “But at the same time, as hard as that was to deal with, we still believed that if we could get over the hump of this pneumonia, we knew there were doctors that had successfully extubated these kids once they had been on ventilators.”

Those doctors were not to be found in hospitals in Jackson. Understandably, Bill said, doctors at University Medical Center had never given much thought to being able to treat SMA I effectively. After communicating with a doctor in Wisconsin, a specialist at UMC was able to get Joseph past pneumonia to thrive again.

“We’ve gotten really good medical care. We’ve gotten some really scary advice from doctors that turned out to be wrong,” Bill said. “It turned out to be a different approach that they didn’t know about. And so we’ve taught them a lot.”

After dealing with Joseph’s pneumonia, doctors have been more prepared to treat other SMA I patients, Bill says.

At only 20 months, Joseph’s personality seems to beam into the souls of nurses and passers-by in public places. Bill and Melissa say they often meet complete strangers who come up to them to say that something special is going to happen with their baby. It is unlike anything they have seen before, and they have had six other children. They believe it’s something spiritual, something inexplicable.

They haven’t decided how they are going to celebrate Joseph’s second birthday. They invited 2,500 people to his last birthday party—family, friends from their church and other supporters who keep up with Joseph on his CarePages profile on the Internet. They say they are thinking about having a smaller, more intimate celebration this time.

However they decide to celebrate it, Joseph’s birthday will be a blessing to the family and a rare steppingstone in treating a troubling disease.

My birthday was June 24. Friends and family have now all figured out that the easiest thing to get me is an iTunes gift card. So I’ve been looking for music. A friend gave me Coldplay’s new album, Viva la Vida. In fact, as I write this, my typing is being slowed because I keep tapping on my mouse and keyboard to “Strawberry Swing.”

Last night, I listened through the album without skipping around for the second time. At the end of the album, the music from the first song, “Life in Technicolor,” resurfaces. I was almost moved to tears when Chris Martin resounded the ending lyrics:

And…
in the end
we lie awake, and we dream of making our escape

Really. It’s that good. It could have been the fact that it was about 1:00 in the morning, but I don’t think so. If you haven’t heard the new album (or the others), check it out at Last.fm, iTunes, or Amazon.