How was your day?

Boy, and I thought Christmas was a bad day. I mean, I was sick, fighting a sore on my lower back, couldn’t leave my house because the door opener for my back door was turned off and, on top of that, I got stuck underneath my counter in the kitchen for three hours when I went to get a drink of water around 6:30 p.m.. Oh yeah, to put icing on the cake I treated my PCA like shit when she arrived to put me to bed. Undoubtedly a result of my frustrations that day.

Well, I think today was even worse.

Over the last week I have spent most of my waking hours redesigning my web site. Redesigning my web site was my goal to complete all of the 10 days I had off during the holidays. Well, when I came to test it this morning I discovered that I made a major mistake and would have to redesign it all over again. All that work down the drain. It was a total failure. What a kick in the -----

I spent about an hour being pissed off and then realized that being angry wasn’t doing any good. So I started the redesign process. Got the basic templates done by the end of the day. Remember, I didn’t get started till around noon.

Looks pretty good. And seeing that I had lunch with my brother, maybe today wasn’t all that bad.

And yes, I did call my PCA and apologize for the way I treated her Christmas night.

I hate bad days!

What temperature is it?

Okay, what's going on here? This afternoon about three o'clock I checked the local television station to see what the temperature was. It was 79.4°!!! What's the deal?

This is December 24, Christmas Eve. It shouldn't be hovering around 80°. I guess that's Christmas in Phoenix.

I've lived here in Phoenix for almost 27 years now and I've NEVER experienced this warm up temperature the day before Christmas. So much for Santa's ability to land.

Regardless, I love it. I moved here for the warm temperatures and they sure have pulled through so far this fall and winter season. So here's to continued warm temperatures!

Y'all have a great Christmas!

It's beginning to look like Christmas.

I don't remember the last time I put up any Christmas decorations, either inside my house or outside. Putting up Christmas lights etc. is not something that can physically do myself considering my disability. So my house usually goes undecorated.

Even though I do have two people living with me, they are students they usually go home for the holidays and are not really motivated to decorate my house. I can't blame them.

That changed slightly this year. For the first time in probably 15 years I actually have a decorated Christmas tree in my house. Complete with lights and a lot of ornaments, both handmade and purchased.

And it's not an artificial tree either. It's a real one, direct from some Christmas tree Farm I would imagine. Regardless, it stands in the corner of my family room where we all can enjoy it. It's kind of nice. It brings peacefulness to my home at night. Especially when the house lights are dim and the Christmas tree lights are on.

Thanks Jennifer.

Now, if there were only a few presents underneath it.

We did it!

I can’t believe it but we (my new PCA & myself) made it through the weekend without a hitch. Except for having someone there to “spot” him on his first transfer of me into my wheelchair, he did the complete routine both days without any problems. Except for taking a little longer and my having to explain a little more, both mornings went pretty much as normal.

I can’t believe how fast this guy has caught on. It’s obvious he has had previous experience doing this. A weekend I wasn’t looking forward to turned out to be a highly successful one.

I’ll rest easy the coming weeks (understanding that the holidays are approaching and my other PCA’s want time off) knowing this guy (Denis) is totally capable.

Welcome to my staff Denis! Hopefully this will be a long and enjoyable work relationship for both of us.

Another Blast from the Recent Past.

Today, surprisingly, in the mail I received yet another letter from the Nurse Practitioner who worked for the neurosurgeon who performed the surgery on my spinal cord last December 29.

She was the glue that held the neurosurgeon’s office together. Perhaps his medical practice itself. I surprisingly received a letter from her earlier this year that was a response from a “thank you” e-mail I sent to his office for her after my body had stabilized from the surgery. The letter was a complete surprise.

From what she said in her letter, she and her husband are going to be moving to Michigan, specifically Ann Arbor, where they are both originally from. Great for them!

I write this because I am completely taken back by the fact that she has even written me back at all. I was totally taken off guard by her first letter, much more so when I received her second letter today.

In her letter she said that she would like to have lunch with me before she leaves for good, back to Michigan. She said she would call me at my office sometime soon so we can get together for lunch. I can’t wait!

Sandy is a wonderful human being; someone I’ll never forget. She took care of me when the doctor “was away.” Filling his shoes was not an easy task for her, I’m sure. Regardless, she did a great job.

Thank God for great Nurse Practitioners!

Am I getting old?

Today the commencement ceremonies for the Fall 2005 semester were held here at Arizona State University.

I've been working here at ASU for 20+ years which means this was my 41st commencement. That's not counting the commencement ceremonies held at the end of each summer session. Nor does it include the 6 commencements I experienced while working at the University of Arkansas for three years.

Last night while lying in bed I was pondering the thought that I have experienced so many commencement exercises. That led me to realize that I have been working here at ASU longer than some of my PCA's have been alive.

Does that make me feel old, or what?

My Family.

Yesterday I made some comments about things that might be said after I die, particularly at my funeral. Comments that would be most likely made by my family, close relatives or friends. So I wanted to share with everyone thoughts I have about my family.

This is a photograph of my family that was taken on my 50th birthday. My brothers and sisters, all 8 of them, came out to Tempe, to help me celebrate my birthday.

As a surprise, they installed a Pergo wood floor throughout my house. Something I was totally unaware of at the time.

The love among my family is very unique and something I am very grateful for. God has blessed me with a wonderful family. A family that I attribute all of my success to. If it wasn't for them, I would never be where I am today. Every day I thank God I have had such a wonderful support system in my family. Thank you to each and every one of you.

Mary, Ellen, Arlene, Elizabeth, Joseph, Barbara, Robert Jr., and Greg. I love you all!

Results of an execution?

A man was executed in California early this morning. 12:35 a.m. MST to be exact. He had spent 24 years on death row.

Now I'm not about to get into the politics or the morals of the death penalty. Nor am I going to reveal my own personal belief. But what I do want to talk a little about is death. Particularly my own.

I've come to realize that sooner or later, probably sooner; I will meet with my own demise. And I oftentimes wonder how I made it this long. But again, that's not the point I'm trying to get at.

After reading many well-written articles about the execution, specifically those referring to the people who protested the execution, I started thinking about how people would react upon hearing of my death. Particularly, what might be said in light of the fact that I have lived the great majority of my life with a severe disability?

Having been to the funerals of other individuals & friends who survived life with their own unique disability, I can just imagine what some well-intentioned people might say.

It was common at those funerals for people to comment that "they are free from their wheelchair now and are walking in heaven," or something to that effect. Man, gag me with a spoon!

I completely understand why people might say that. It makes them feel as though the person is now much better off. But, if you think about it, aren't those comments kind of insulting? It's almost like saying their life must've been so terrible because they had a disability. It focuses on their disability not who they were as a person or what they may have accomplished.

I guess its all part of the grieving process.

I just hope that at my funeral people focus more on the things that I did with my life. I don't want them saying that I am now "free" of those terrible physical restrictions; that I'm in heaven happily walking with my relatives who preceded me. I want them to talk about me as a person, my career, my accomplishments, not me as a person who is now free from his disability.

My disability didn't define me as a person on earth, why should the lack of it define me as a person in heaven.

Training, Urrrg!

Well, we got through the weekend and I think the majority of the training is over. That is, the training of the new PCA I just hired. Actually, he's been coming over for the last three weeks, but only observing. Training is a process where at first you just observe, then slowly begin assisting more and more.

I hate the training period. Normally the process usually takes just a little over an hour but slows down to a crawl during the training process. What regularly takes just over an hour can require over two hours.

Mistakes are made and the trainee seems to fumble with every little thing. Although I feel I'm a patient individual, the training process sure is a test for me. I wake up in the morning and immediately become a teacher, explaining to and guiding the "student" through a process they've never experienced.

I realize that the only way someone is going to learn the routine is to actually do it. You learn from your mistakes as long as you have someone to explain the exact "how's and whys." I have to constantly reinforce those things that are done correctly and patiently explain that mistakes will be made, but that's okay. With time, things will continue to get better and go more smoothly.

Transferring me from my bed to my chair is by far the most difficult part of the entire routine to learn. It requires me to be placed in my chair precisely because that's how I'll be sitting all day. Sitting the little too far to the right or left can be very uncomfortable for me and could cause abnormal pressure on my skin.

Then, once in my chair I'm very particular about my clothes being straight and neat. The first few transfers usually result in my not being positioned anywhere near perfect and my clothes are usually twisted somewhat. Things that we just need to work through together.

I'm always relieved when the routine is over when training. It's extremely challenging having to explain every little detail. Pull this around more. That needs to be a little higher. Don't worry; you're not going to hurt me. And I understand it's as frustrating for the person being trained as it is for me; probably more so because they've never been exposed to it before.

But we got through the weekend and I'm confident that my new employee will do just fine given time. However, the next few weeks will still be challenging.

Fortunately he's willing to learn and understands that he'll be making mistakes along the way. He understands that he'll learn best by doing and perhaps making a few mistakes.

Mainly though, I like him as a person. He genuinely wants to do things right. That's an extremely important factor overall.

How good will he eventually become? Only time will tell.

Finally!!!

It's been long overdue. At least three months. That's how long I've been trying to hire a new Personal Care Assistant (PCA) to assist with getting me up in the morning on Saturday and Sunday.

I've been fortunate that I have another PCA dedicated enough to work seven days a week, every morning, until I find some relief.

I feel terrible that I have had to take advantage of his generosity for so long but I didn't have any other option. Fortunately I believe that I have finally found the right person to cover these two mornings.

This scenario is a reflection of the sometimes difficult challenge I have finding quality help. Being a PCA isn't a job for just anyone. They have to have at least a basic understanding of the work, be dependable and trustworthy, and possess the qualities of paying attention to detail and listening to and following through with specific instructions.

Over the years I've become more and more selective regarding who I choose to hire. I have to. As I'm aging, I'm discovering that paying more detailed attention to my care is absolutely critical. My skin breaks down easier, I'm not as flexible as I used to be making transfers more difficult, and of course I need to make sure I get to work on time every day and that my appearance is appropriate.

Well, now that I have identified someone who I feel well meet the standards I've set, I need to train them and become used to their handling me in the very personal way that is required. That begins this weekend. There is a lot of personal contact involved not to mention the describing any suspicious markings on my body that could turn into full-blown sores; something that could lie me up in bed for days, even weeks. Building that trust doesn't come overnight and it is a process I find extremely stressful no matter how many times I've gone through it.

Regardless, I feel confident that the individual I have hired will do just fine, given time. When it comes to this adjustment, the learning curve never passes fast enough for me.

Another day at work.

Final exams are a regular part most all Universities. Today was the first day of finals here at Arizona State University. It's interesting watching the students as they walked through the campus during this time of this semester. Some of them seem like they're in a daze, probably intensely focused on the exam they are about to take. Many of the students walk while reading notes, a last-minute cramming session so to speak.

Here at our office, the Disability Resource Center, life is pretty quiet, at least for me. It usually is during finals because students are busy studying. And with all of their coursework behind them there is really no need for them to stop by our office.

Even though it was a relatively mundane day for me today, I did have the privilege of joining the Vice President of Student Affairs for lunch. On occasion, throughout the academic year, the VP will invite five or six staff members to have lunch, supposedly to provide an opportunity to hear their concerns, answer their questions, and engage in a dialogue about what is happening at the University and where we are headed.

During lunch I couldn't help but realize that even though I was sitting across from such a high administrator, and never once felt intimidated. She portrayed herself as genuinely interested in our thoughts and listened intently as we expressed our concerns. I think she had just as many questions for us as we have for her. She is obviously very good at what she does.

As we were leaving the building she took me aside and commented on how good I looked, obviously referring to the many health challenges I had recently endured. I was impressed with her kind words and even more so with the fact that she even knew what had happened. I came away from the event with a different view of this individual. She was a person, just like me in many ways.

What's this?

I have been wanting to begin journaling my life in some way but never have quite figured out how to best do that. Then I visited the blog of Dr. Michael Crow, President of Arizona State University, and realized that this medium might be a good way for me to start tracking my life. I'm hoping it will serve as a motivator for me when it comes to my frequent, or not so frequent postings. I don't, for one minute, think that thousands of people will come flocking to this blog. But, if it helps one person understand me a little better, it will have served its purpose.

With that said, watch for new postings and you never know you might learn.