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.