Another Anniversary?!

Last year, on March 10th, I completely forgot about marking the anniversary of the accident. I chalked it up to acceptance. You know, if there was no pain, no regret - nothing special about the day - I must be in the 'acceptance phase' of the grief cycle. Right? Well, that may be the case, I'm not really sure. But the anniversary of the accident should serve a purpose in my life and the lives of all those affected by the accident and resulting paralysis. At least, that's what I'm feeling this year. ;-)

So with this post, I intend to answer a lot of the questions that people are asking lately. And perhaps I'll tell a couple other stories. We'll see how it goes.

Physically, I've settled into a pretty healthy state. It's common for people with spinal cord injury to have various ailments related to sitting (a lot!), limited exercise, medication and the unique way we have to use the restroom. From this set of common causes of problems, I haven't had a lot of problems at all. But I must say that I do much better in the summer time. Exercise is really the key.

It's hard to get outside and push in the wheelchair in the Utah Winter. Pushing for reasonably long distance means that I keep my heart and lungs healthy. My arms and shoulder are totally ripped :-). And I feel better about life. It also significantly reduces the nagging pain of nerve injury that encircles my chest and the burning feeling in my legs and bottom. A couple of Sundays ago. I decided to push home from church. The sun was shining, although it was a little chilly. So I kept my suit coat on and headed out of the parking lot. Just then, a steady wind kicked up - right into my face. It's about 300 yards up a slight incline that took me 15 minutes! Little girls in in their Sunday shoes were passing my by trying not to make eye contact. :-) My suit coat acted like a parachute more than it kept me warm! LOL But I got home after 20 minutes and I felt pretty good! Can't wait for Spring and Summer.

Some of you that have seen me in the little community races around Utah County are surprised that I do these things in my normal 'everyday chair'. I keep telling myself that I need to get a racing chair. But they are so dang expensive that I keep putting it off for other priorities. The only problem, besides excessive wear and tear, is that my everyday chair is what is called an open frame design. It's basically just a letter L. This keeps the weight down and makes it easier to transfer in and out of the car. But without reinforcing tubes, the frame tends to vibrate at higher speeds - like greater than 5 miles per hour or so. One of the front casters will vibrate a little, transfers the vibration to the frame which transfers it to the other caster, which then resonates back until the whole front end of the chair lights up with vibration. This slows me down - a lot! If I'm headed downhill, I lean forward and grab the frame to dampen the vibration. I can steer a little by pushing the caster housing with my fingers as I'm holding the frame as well. A little dangerous, I know. But I've only crashed once, so... LOL

Just a funny thing about my wheelchair that I thought I would throw in here. I had been receiving bills from IHC periodically saying that Aetna had not yet paid for the wheelchair. Every time I called, the IHC person would tell me that it was just a clerical thing and I didn't need to do anything, until now... I got a call from IHC three weeks ago. The lady was a little sheepish and said,

"Well, Mr. Townsend, um, your insurance company has refused to pay for your wheelchair. We have exhausted all of our appeals. So, um, we need to remind you that payment is your responsibility. So, um, I'm sorry, but we need you to pay us for the wheelchair."

What?! "Yes, I understand that it's my responsibility. But can you tell me why they won't pay?", I asked.

"Well, from the codes they used to decline our appeals, it seems that they don't believe your wheelchair is medically necessary," even more sheepishly.

What?! But this time, I couldn't hold it in. "What?! What part of my wheelchair isn't medically necessary? The wheels? The casters? The cushion? The brakes? I'm sure they know that I'm paralyzed"

"Apparently, the whole thing."

So there you have it folks! After four years, I discover that I don't really need a wheelchair! Hallelujah!

Speaking of discoveries, some of you have asked what has happened with recovery. What can I feel and move? What will happen in the future? And similar things. There could be a long discussion about this. But this entry is already pretty long. So I'll just give the highlights.

• I still have no normal sensation below the injury level. And I don't expect I will ever have any normal sensation return. I can feel when I need to go to bathroom. I can feel tickling feelings on the bottom of my left foot when Ellen tries to tease me. And I feel discomfort when I have been sitting in the same position for too long. I'll just shift in my chair, lift up for a minute, or stretch my legs out.
• I have very limited recovery of movement - called volitional movement. This is the kind of movement that my brain is telling my body to do. I can straighten out my left leg with what looks like very low voltage control. I can push my left foot down and push my left and right toes down a little. The only use I've found for any of this is when lying in bed: I can stretch out a little. That feels good. And when I'm in my chair, I can stretch by left leg a little bit. Everything else is just for parlor tricks. :-)
• Tone and spasticity is still with me in full force. My thighs and feet have muscle tone - meaning they like to stay in whatever position they are currently in. When any of the muscles from my hips down feel a rapid stretch, they reflex by constricting. This sometimes causes spasms. At times, my feet will bounce or my legs will want to lift or straighten, and my IQ will jump by twenty points. (just making sure you were paying attention). On rare occasions spasms and tone get in the way. Bumpy paths are a royal pain. And when I've been sitting without stretching for a while, my body really gets tight, making it hard to transfer and push. See above about exercise. Just think of spasms like having to carry a two year-old around with you all the time. ;-)
  

I take medication to keep the tone and spasms down. But I don't take more because it would make me VERY DIM in the head. Who wants that? So I'll deal with the occasional spasms. There have been some very hopeful advances in preventing the scar tissue that cause most of the spinal cord injury in accidents like mine. But I don't expect that they will be able to help people that already have scar tissue. They are focusing on prevention immediately after the injury. We're all awaiting the outcome of the clinical trials that started last year. It will be more like the polio vaccine. People that had already contracted polio lived to see the disease eradicated. But it did not benefit them personally.

Currently, I am working at Novell in an engineering operations role. I am also attending graduate school at BYU. I'll have my MBA next summer. It's been a GREAT experience so far. My wife Ellen is also attending school at UVU. She hopes to complete her Bachelor's degree in Youth Leadership within two years. We have similar courses at times. So it's been fun to discuss. So my life is fun and busy with school for the whole family!

Although most days are good and 'normal'. I still have days that are challenging. Sometimes, pain will be a problem or I'll get frustrated with something I can't seem to reach :-). And sometimes, very rarely, I feel sorry for myself. But hey! Don't we all?

I still appreciate the offers to help. I appreciate the thoughtful people that hold the door open. I appreciate the people that carry things for me when my lap just won't due. And I always appreciate the people that treat me like a normal person without ignoring the disability. In fact, that's the way I like to think of myself. Except, without feigning humility, I actually think of myself as an extraordinary paralyzed person. But it is not paralysis that makes me extraordinary.

Anybody can be extraordinary if they choose to be.

Here is a video that my son Adam produced to encourage young people to stay away from smoking. Please vote for him!

Townsend Men Reunion

Last weekend, April 28-30, my brothers and I converged in Wichita, Kansas to bless Michael newest grandson, Bennet and to just get reacquainted. It was a good time and we all felt very blessed to be able to make it out there at such a beautiful season in Kansas.

I had only one paraplegic moment on the way out. I had to make a connection in Minneapolis. Unfortunately, the Salt Lake flight was 15 minutes late and I had to wheel, no joke, a mile from one gate to the next. With spasms stopping me every 100 yards or so, I wheeled up to the departure gate as the jetway was being pulled away from the plane. Crud! So I sat in the airport for seven hours for the next flight to Wichita. The real bad thing is that I missed the blessing of my new grand-nephew and just about a whole day with my brothers and Lisa.

Live and learn in this new life. But for all intents and purposes, this was the first travel experience that I did all on my own. But I still owe a lot to my brothers and sister, Lisa. They were accomodating and understanding of all of my little complications.

My Wheelchair

I was going to attempt some poetry, under the title 'Ode to My Wheelchair'. But poetry is not one of my talents. So I'll stick to prose - which may or may not be one of my talents. ;)

I can't actually trace back to the moment I realized that life would be different because it would be life in a wheelchair. It was some time in the first two weeks though; some time in ICU. There came a time when I just wanted to get up and go outside. The overwhelming feeling is this: "I CAN'T MOVE!"

In my particular case, I can't move anything below my chest. I have full function in my arms. But I can't situp or roll over without the use of my arms. And of course, I can't ambulate (walk) at all. But I can move around in this world using my arms - in a wheelchair. So with this realization and the first opportunity I got, I was hoisted into my first wheelchair.

The pink chair Ellen is sitting in was the first one I rode in that could be considered a wheelchair. I rode in it the day before this picture was taken - they day before I left ICU for rehab.

It can lay flat like a bed. In fact, that's how they got me into it. Very much like a bed to bed transfer. Then they sat me up to about a 45 degree angle and pushed me outside onto second story balcony. Unless Greg has something, I don't have any documentation of that event. But it was so nice to just breathe outside early spring air.

After I moved to the rehab center, I got to try an actual wheelchair with big wheels that I could push myself. You'll notice that the similarity in both the pink chair and this one is that they recline. This was necessary because I didn't have any upright tolerance yet. Basically, if I sat up for more that two or three minutes, I would pass out.

After this recliner chair did it's job for about three days, we started working with a chair that is more similar to mine now. The difference is that it was much heavier and could actually fold up like regular hospital wheelchairs that most people are familiar with.

As you can see in this picture, it was in this chair that I got to make my first visit home. The hope was that the width of this chair would be about the same as my long term chair. So I tried it out on the main for of the house. This is when we discovered that we would have to finish the new bedroom before I could come home and stay the night: the chair could not fit through the door of the half bath on our main level.

The next chair I borrowed was to be mine for about four months. It didn't quite fit me. But it is an actual every day chair that many paralyzed people use every day. It's a rigid frame wheelchair just like mine today. That means that only the wheels come off, the back of the seat folds down and the cushion comes out. It is also very light - about 22lbs.

I made my way around the world in this chair until I got my current, custom chair that was made just for me.

I remember sitting in my hospital bed reading about different wheelchair types, options, pros and cons. I looked at different wheel construction, braking systems and tires. I talked to a couple guys that visited me about their chairs. Then one day, I realized I was getting a little bit excited about getting a new chair just for me. Never before in my life had I imagined, I would become an expert in wheelchair design. I never thought this piece of equipment would be important to me. And this is the center of the conflict about my wheelchair.

The wheelchair is the central symbol of disability. You see it on signs. You see it as an icon on web sites. You see it on my license plate. The white symbol on a blue background is to many, the first and only thing some people will know about me when they see me driving down the road or see my car parked in the Wal*Mart parking lot. It is a label that I would like to live beyond. It is this set of stereotypes to which people refer when they lovingly say, "I don't even notice your wheelchair, Steve." But the reality is that my wheelchair is part of my and my family's life. And it is a tremendous blessing.

My wheelchair is the answer to that terrible feeling that I had in ICU: "I CAN'T MOVE!" "I'm trapped!" "I'm paralyzed!" But with the wheelchair next to my bed, I can sit myself up, transfer to my wheelchair and go just about every place you can go. I can wheel to my car, climb in and drive just about every place you can drive. Then I can put my wheelchair together, transfer to it from the car and go everywhere you can go. This is especially true in the United States where most public places and many private places are wheelchair accessible. And when I get stuck, as has been known to happen, you help me. I am so grateful to each of you for your help in these situations. And I am very grateful for my wheelchair.

Housekeeping post

Just a couple items that I should note about this new blog.

• I have enabled anonymous commenting. That means anyone can comment without having a google account.
• However, in order to prevent comment spam, you'll have to successfully enter the word challenge. I hope that won't be too much of a pain for you. It's just supposed to be a pain for blog spam bots that seem to like to attack townsendnews.com
• Comments should show up immediately. In the past, I had to 'moderate' the comments so garbage posts didn't offend everyone. So your comments would sit in a bucket waiting for me to approve them.

Some recent pictures of the Townsend Family

It's been a while since I posted any pictures out here. So here are a few.

This was on February 4th right after church. I'm noticing that my eyes aren't smiling in this picture. I've noticed that without any cardiovascular workout, I am very tired a lot of the time.

This is our Adam on MORP (<-> Prom). Four couples came over, including Natalie and her date, and Adam cooked dinner for them. Since the injury, Adam has become the designated grill master. Hamburgers were the on for this night, at Natalie's request. But he excels at steak and marrinated chicken as well.

One Year Anniversary Summary

Well, hello everyone, after a long absence. It's been so long that townsendnews.com expired. And a squatter grabbed it! Shoot. I'm going to try grab all of the content from the old host and bring it forward here.

I have received a few emails in the last two weeks from friends around the world. I feel bad for not posting an entry. That first weekend was very busy. We actually had a party with some friends and family that were there in the hospital the first night. It was really fun. But alas that weekend, ended up being really busy so I couldn't post. And given the difficult of writing the "Open letter to Novell" the night before, I knew it would take a while. That email actually took me an hour to write. Go figure. I think some of it was that it is hard to write about personal things to a known broad audience. And some of it was that I wanted to be brief but communicate three things: gratitude, current status and bring to memory to events that transpired for many of us a year ago.

Responses to that email and other emails I have received over the last two weeks have been very kind and supportive. There were a few that have been more about the new perspective people have gained after considering "What would I be like if this happened to me?" This is really what I have been contemplating these last couple of weeks.

Having been paralyzed for a year now, all of us have passed one instance of each of the holidays and celebrations that occur annually. And there are a few that are still to come because I was in the hospital when they came and went. The first of these was Novell Brainshare. Within the next two weeks, we'll pass Adam's birthday and Easter. But throughout the year, there have been birthdays, Ellen and my wedding anniversary, Christmas, the New Year, Halloween, Valentine's Day and everything else. I can't say that each was celebrated with total acceptance of our new life. You just can't help recalling previous celebrations. Valentine's Day and our anniversary was particularly weird for Ellen and I. Ellen, of course, was very kind and loving on Valentine's Day. She sent some flowers to Novell that still sit on my little conference table. I tried to do the most most cliche Valentine's that I possible could. It was my way of saying, "See I'm still just like 80% of every other man in the world." So I had 12 dozen red roses delivered and hand carried chocolates in a heart shape box to her after work. It was fun. But what still pained was that I have not found a viable substitute for dancing. This is really what she wants. Any ideas anyone?

I'll post a few more over the weekend. What would you like to hear about? What are you just dying to know about? Here's some potential topics:

Ode to my wheelchair
How do the hand controls work in the Subaru?
How do you get dressed?
What about the spasms after a year?
What's next for rehabilitation?
Update on the new house.
How are the teenagers doing?
What about the younger kids?
What do some people say that really bugs you?
What do some people say or do that you really like?
More pictures.

Feedback welcome.

-Steve