Townsend News

Disability Access Review: Knott's Berry Farm

2011-08-02T20:23:00.002-06:00

Last week, I posted my personal findings about enjoying the attractions at Disneyland with paralysis. Even though I had been before about a year after the accident, we went all out this time. The goal was five days in SoCal with three days at Disneyland Resort, one day at Knott's Berry Farm and one day at Six Flag's Magic Mountain. Since I chickened out on a couple Disneyland rides in 2007, I tried a little more research ahead of time. The most difficult research came when looking for ANYTHING about Knott's Berry Farm. So we decided to just go for it. A lot of people with Spinal Cord Injury develop this attitude. Sometimes, you just can't see the end from the beginning. And even more challenging, sometimes you can see a path to success more than one step in front of you. So with Knott's, I just kind of looked at the park map and said, "It can't be THAT bad. I'm sure they've done something to make it work." The hope was that the web site said to check with guest services when you get there for help with people with disabilities. I thought that was a good sign.

So here's what we found: Knott's Berry Farm IS NOT ACCESSIBLE FOR PEOPLE WITH PARALYSIS! (Yes, I know I'm yelling.) I was really upset that we paid $40ish to get into a park that I had a really hard time enjoying. And moreover, the clientele at Knott's has taken on a rather local 'punk and skank' flavor. So there was quite a bit of immodest dress, tattoos, piercings and foul language to color the experience as I waited for my family outside of EVERY RIDE IN THE PARK! (Yes, I'm yelling again. Sorry…)

There is indeed a booklet, clearly written by lawyers, that lists every attraction in the park and all of the abilities one must have in order to participate. I was not able to find this book online. Suffice it to say, every ride, queue or exit, requires you to step up or down one or more steps, squeeze through a space not wide enough for a wheelchair, or turn water into wine. There is even one ride that points disabled people to the exit for access. Then the exit has 14 steps up to the ride. I don't think these people get it.

So, if you find yourself with an option to NOT go to Knott's, choose that. But if your companions, family, etc. really want to go, here are some things you might be able to do.

Attraction Name	How to Access	How to Board	Recommendation
Ghost Town rides	Some rides (like Ghostrider) provide access through the exit	You cannot get your wheelchair near the ride	Not accessible
Ghost Town shows, stores and restaurants	Some of these are pretty interesting. Although some require a bit of a 'hop' up a threshold to get into the store.	No transfer required.	Accessible
Mystery Lodge	Enter through the main entrance	There is a row provided for people in wheelchairs. No transfer is required	Completely accessible
The Boardwalk rides	None of these were accessible although the 'Sky Cabin' wasn't open the day we were there.	You cannot get your wheelchair near the ride or the transfer is prohibitive.	Not accessible
The Boardwalk shows, stores and restaurants	We ate at Johnny Rocket's and I went in a few of the stores. It wasn't a bad place to hang out while everyone else is having fun.	The Snoopy theater was closed when we were there. But it looked like there was space for wheelchairs.	No transfer required
Fiesta Village rides	None of these rides are accessible	You cannot get your wheelchair near the ride	Not accessible
Fiesta Village shows, stores and restaurants	There really isn't anything of note to do in this section of the park.	Stay in the Boardwalk area if you can	Nothing to do here
Camp Snoopy	My kids are too old, so we didn't go here this time…	-	Unknown

Disability Access Review: Disneyland

2011-07-28T20:02:00.029-06:00

When I was paralyzed five years ago, I started compiling a list of all of the advantages that were now mine. Some of these were my own discovery. Others were simply mentioned in passing by well wishers. Here's the top five:

The parking - yep, this is obvious. Got it. You don't need to tell me...again.
Shoes last FOREVER. I discovered this on my own. And since my feet don't sweat anymore, they smell fresh, too!
Front of the line at Disneyland by entering the ride through the exit. An occupational therapist mentioned this with glee as if the disability might be worth it for this one benefit alone.
Sweet seats in Edwards Stadium at BYU Football home games. I have to admit that last season, I made sure to text pictures of the 50 yard line to my closest friends just to rub it in.
Free admission to the Wynnsong Theaters in Provo. I tried it...once. It would be worth the drive if it came with a free drink, too.

Anyone that has experienced Disneyland with a disability will testify to this. THE SECRET IS OUT! The secret is not only that people with disabilities get preferential seating; but that Disney cannot question your disability. So basically, you simply declare, "I have a disability" and you get the preference. This time, I actually saw a couple of teenage girls in line at Star Tours. A blonde girl was pushing a brunette in a Disneyland wheelchair. We chatted and parted ways. I saw them next in line for The Haunted Mansion. But this time the Brunette was pushing the Blonde. "Hey!" I yelled. "I'm on to you!" They just smiled and pushed forward. Shameless.

So what you need to expect is that you will wait just as long as everyone else to get on any attraction at Disneyland. Sometimes you will be pleasantly surprised. But don't count on it. Then you'll have one more reason to be happy in the Happiest Place on Earth!

The real benefit here is that Disney has done a pretty good job accommodating people with paralysis so that we can actually get on the ride. You'll see later in posts about Knott's Berry Farm that this is not a universal benefit. Here is a quick rundown of the most popular attractions and how they measure up.

Attraction Name	How to Access	How to Board	Recommendation
Pirates of the Caribbean	The line forms near the exit by the Blue Bayou restaurant. As you get to the front of this line, they will let you move to the actual exit of the ride inside the bayou until your boat arrives.	This is a fairly challenging transfer down into the boat. I did this in two steps - from the chair to the floor, then floor to the seat. On the way back out, I did that in reverse. But because of the gate design, my 16-year old son actually lifted me into the chair from behind.	Tough Transfer
Haunted Mansion	Enter through the main line. You will be diverted from the main line as you get near the house. From there, you'll get into the ride very quickly. They will usher you past the line to a waiting area until the accessible cart arrives	There is one cart that is built to make transfers a little easier. But it's still a rather precarious transfer in. They'll stop the ride if you need extra time.	Easy Transfer
The Jungle Cruise	Enter this ride through the exit. You'll find that there is not a big line for this.	They actually have a 'WAVe' (Wheelchair Accessible Vehicle) for this ride. If you tell them that you prefer to stay in your chair, they'll order it up. A ramp extends and you just roll onto a little fenced platform in the boat. It lowers slightly. But suffice it to say that the natives would think you a King if they were to capture you.	No Transfer Required
Indiana Jones Adventure	You enter this attraction through the exit	Originally, I had marked this too challenging of a transfer. But another T6 SCI guy, BillS from the Apparalyzed forum said he totally did it with relative ease. So I updated this to a yellow with a challenging transfer (from my perspective). I'll try this ride again when we return! Thanks BillS!	Could be a challenging transfer over the side of the jeep.
Splash Mountain	You enter this attraction through the exit	I have not been on this ride since the accident. The transfer just seemed too difficult.	Tough Transfer
Alice in Wonderland, Mr. Toad's Wild Ride, Peter Pan, Pinocchio, Snow White	Enter all of these rides through the exit. You will not wait long for any of these classic storybook rides.	All of these rides have one vehicle that is slightly adapted to make a transfer easier. There are not a lot of stable things to hold onto during the transfer. But I could make it work with a little support from a companion.	Easy Transfer
It's a Small World	There is a disability line near the exit of the ride. The wait is not too long.	If you tell the attendant that you would like to stay in your chair, they will order up the WAVe boat for you. You'll find yourself sitting rather high in the boat. But it is still a great ride. If so inclined, you can ask the attendant to let you go twice if the line isn't too long.	No Transfer Required
Mad Tea Party	Not accessible	This ride is not accessible for paralyzed people	Not Accessible
Matterhorn Bobsleds	Unknown	Given the difficulty of the transfer, I never attempted this ride.	Haven't attempted
Big Thunder Mountain Railroad	Enter this ride through the exit. You will have to wait some time to get on this ride.	There is one mining cart in the train that has been modified to make a transfer a little easier. The transfer is a two step down into the cart. You will get out on the other side of the train so an attendant will bring your chair around for you. I didn't find this ride too fun given the type of restraint. I was so focused on holding myself in my seat that I didn't really enjoy the ride.	Tough Transfer
Fantasmic	Disney's ever popular light and water show has a disability seating area near the Mark Twain riverboat launch.	You'll still want to get there early because of the looseness of 'disability' definition in some people's mind. Be prepared to ask the fakers and fat people to move out of the way so you can see from your chair.	No Transfer Required
Mark Twain Riverboat	Enter the main waiting area	There is a ramp that is easily traversed in your chair. You will be able to move around the entire main deck of the boat. There is no access to the upper decks	No Transfer Required
Disneyland Railroad	You can board this ride in Toon Town or New Orleans square through the exit ramp.	The last car in the each train is accessible via a ramp. You will be able to stay in your chair the entire time.	No Transfer Required
Roger Rabbit	Wait in the main line for this attraction	There is a WAVe for this ride. But this car does not spin. This makes the ride pretty dumb. Just let your kids ride while you find a drink or pretzel to eat as you wait.	No Transfer Required
Buzz Lightyear	Wait in the main line for this attraction	There is a WAVe for this ride. Even though there is a little seat available for a companion, I recommend you ride this alone and put your companions in the car behind you. If there's nobody waiting for the WAVe ask to go an extra time!	No Transfer Required
Space Mountain	Enter through the exit of this attraction	I haven't tried this ride yet. However, BillS from the Apparalyzed forum said the transfer is similar to California Screaming in California Adventure - a multi-step transfer provided for paralyzed people. I'll totally try this next time!	Haven't personally attempted. But a definite multi-step transfer is provided.
Star Tours	Enter through the main line for this attraction. Half way through the line you will be diverted to the elevator. This cuts about 45 minutes off your wait time.	There is one seat in the front left of the star cruiser designed to make transfers easier - the arm of the chair swings free. The attendant will take your chair and return it to you when the ride is over.	Easy Transfer

SoCal Amusement Parks: Accessibility Review

2011-07-27T22:31:00.003-06:00

So we have been home for about a month now. But I have GOT to share the news about accessibility of the 3 major amusement parks in Southern California:

Disneyland Resort
Knott's Berry Farm
Six Flag's Magic Mountain

If you are physically disabled and want to visit one of these parks, you are probably going to do what I did. First you'll visit the park's official web sites to look for disability access information. You will be dissatisfied. So you'll do a general Google search for 'unofficial' accessibility information about the parks. You'll find a little bit, like "the park has amenities for people with disabilities. Check with guest services when you arrive." Then you'll panic search with things like, "can paraplegics get on the rides at Knott's Berry Farm?" With that, you'll find all the cases where people have been paralyzed by amusement park rides.

So my goal with the next three posts is to document my personal experience at these three amusement parks. My experience will be relevant to you if you have a disability similar to mine. Here is a brief description of my injury and resulting capability.

I am a 40-year-old man in reasonably good health
I have a complete Spinal Cord Injury at T4/T5
I am paralyzed from the chest down with quite a bit of tone and spasticity that I manage with Baclofen. However, I keep the dosage pretty low so I still have quite a bit of clonus (ankle spasms)
I have good upper body strength that allows me to transfer in and out of my wheelchair reasonably consistently.
I make my way in the world with an Invacare Crossfire T6 Titanium. It's a manual rigid frame wheelchair.

What follows will be my experience. I hope your experience in these parks is as good or better than mine.

2010 Townsend Family Newsletter

2010-12-18T13:22:00.002-07:00

MERRY CHRISTMAS!

We sincerely hope this letter finds you well and happy. You have been in our prayers each day as we thank our Heavenly Father for all those that bless our lives in so many ways.

FAMILY

The education theme continued in 2010 with everyone in the family in school or on an internship. Books, homework, deadlines and tests are the popular topics around the dinner table these days. I never thought about it before hand, but it’s amazing how much we all have in common now. “This girl kept talking to me during reading time today”; “I totally didn’t get the lesson today”; “I need your help on my homework tonight”; “My teacher is a total dork”; or “Why do I have to do this assignment?” have all been heard at the dinner table in the last week. See if you can guess who said what. But all is not toil and misery- we did get out for some fun this year, too.

In July, Ellen, Nikki, Abbie and I drove to California to visit my family in the Bay Area. At my sister’s pool party, the perfect day at the beach, the amazing Chaminade Resort, and in my grandmother’s backyard -- we had a wonderful time renewing our relationships with each other. It is a great blessing to be members of the Townsend family.

Sunday dinners are the highlight of the week as everyone comes home. Even our occasional Sunday visitors know they can expect a pot roast banquet and a rowdy game of Mad Gab, Pit, or Scripture chase when they come over for the evening. Sparky continues to be a good old dog, companion, foot warmer, guinea pig guardian, and ball fetcher.

ABBIE

Our youngest, Abbie, had an amazing year of growth in body, mind and talent. We continue to be amazed at Abbie’s creative talents, including learning how to cook at age 9. She started with the important things – cake, cookies, candy, hamburgers, French fries, mashed potatoes and masterful garden salads. She particularly enjoys the table presentation with flowers, cards, fancy napkins and other artwork. Abbie makes us smile with her ingenious questions, such as, “When we get sick, why is it always in our face?” and “I am late to school every day and the lady in the office STILL spells my name wrong! When will she get it right?”

NIKKI

Our Nikki is an official teenager now and decided to allow the Jr. High to enjoy her presence. She has made the transition very smoothly and continues to impress us with good grades and a winning, friendly attitude, punctuated with a beautiful smile (she got that from her Dad). She is preparing to join the High School Marching Band color guard with lessons from the ‘winter guard’. If this isn’t exciting enough, she can use her new dance moves and flag skills as a Ninja.

Through a series of negotiations involving a mop, lemonade, and KSL.com, the girls now have a soft, cuddly guinea pig named Sasha, and Adam no longer has a cold, wet turtle named Flem. While selling the turtle, we found out that she was a male after caring for him for 9 months. I hope the animal recovers from its gender identity crisis as he had painted nails for a number of weeks.

ADAM

Adam started his second year with the award winning American Fork High School Marching Band. They participated in many community parades and perfected their performance in the amazing field show, “Pandemonium”, including a national performance in Indianapolis. His summer was booked with the BSA National Jamboree, tour of the East coast, daily marching rehearsals and a week at Band Camp in horrid Delta, Utah. Never one to get bored, Adam saved for and recently purchased a high definition video camera to feed his love of movie making. Look for his latest productions on YouTube – search ‘adamrtownsend’. He is currently working on a video commercial idea for a dating service; check with him for a public release date.

NATALIE

After a fall semester at UVU, Natalie took a spring internship opportunity at Disney World, working with characters like Chip, Dale, King Louie and Bolt. She returned to her apartment in Utah and toiled in the difficult job market. After part time work at Bath and Body Works and Plato's Closet, she is settling into a receptionist position at Novell and a fun opportunity at Pirate Island, a pizza restaurant where she gets to play dress up and act like a pirate. If you know Natalie, you know she loves this type of "work"! She's currently saving up money so she may travel more and gain new experiences around the world. Natalie continues to be a loyal friend and counselor to her roommates and siblings.

ANDREW

Andrew was serving an LDS mission in Little Rock, AR and returned honorably. He got a job at Myler Disability (interactive law firm) as a screener for new cases. He earned enough money to go to Florida to reconnect with his sister Natalie. Then he saved up for an apartment in Orem, and a trip to Arizona to visit friends. Andrew continued to excel at Myler and is now a paralegal over hundreds of cases in California. He completed his first semester at UVU studying Digital Media with an emphasis in Visual Design (ie. pictures and movies). Andrew also purchased a diamond ring for a young lady named Ashley, and they will be married in the Spring.

ELLEN

Ellen is taking classes at UVU, with an emphasis on non-profit leadership. She loves her classes about social behaviors and business management. When she is not sitting at a desk, or driving kids to and from their corners of the universe, Ellen spends her time as a volunteer to many community events, including the AF Symphony, Cub Scout Day Camp, Webelos Woods, Reflections Art Program, Crescent Jazz Band Festival, Merit Badge Pow Wow, and the Gingerbread House Festival and Gala. She is looking forward to helping with a wedding in March, but not very excited about losing her first little cub to marriage. We try to keep her focused on the fact that she is gaining a wonderful daughter, and will eventually gain little babies to tend!

STEVEN

I spent the year working at Novell, studying business at BYU and doing my best to be a supportive husband and father. I am so proud of each of our children as they pursue their passions and try to follow the Savior's example. I love everything about the Executive MBA program at BYU. I don't know what I'll do with myself after summer graduation. We keep time available each week for home evening, a date night, and the Sabbath. We are fortunate to welcome the ward choir to our music room each Sunday. The kids don't realize it (yet), but they, too, are blessed to have heavenly praises sung in our home as they eat their lunch.

We are always grateful to be blessed with such wonderful friends and family. May your heart be merry and your future bright.

With Love,

Steve, Ellen, Andrew, Natalie, Adam, Nikki, Abbie (Sparky and Sasha) Townsend

Wheelchair Update

2010-10-01T22:07:00.003-06:00

Well, I noticed that in my last post, I shared the news that the Insurance company had determined that I didn't need a wheelchair. That meant that they hadn't paid for it, nor paid for any repairs. So I had been taking care of maintenance for about three years. It wasn't so bad really. Just replacing bolts, cleaning bearings, crimping steel here and there, etc. All this while I was trying to figure out why an insurance company would say a wheelchair wasn't medically necessary. So here's what the hang up was.

As I contacted the call center, I would get a different story each time - fax something here, request something there, etc. Eventually, after faxing multiple departments there, I ended up receiving a copy of all communication between IHC and Aetna from their legal department. It actually took two tries and a conference call with one of their lawyers to finally get the letter of denial and the explanation and the denial of appeal. Since the chair was billed as a package, they denied the whole thing because of three things they said were not necessary:

I did not need an 'ultra-light frame'
I did not need light wheels (carbon fiber 3 spoke X-cores)
I did not need solid core/no flat tires

The reason is that Aetna only covers medical equipment that you need to function at home. All of those things would be necessary for going out doors or transferring into a car. That's not covered. They were saying, in affect, 'Stay home Mr. Townsend. You are disabled.' I couldn't believe that lack of logic, and apparent discrimination. I secured my insurance through my employer but the insurance company would not provide the equipment I needed to retain that employment. I figured I had an open and shut case.

So, acting on advice from my colleague in HR, I called our benefits coordinator at headquarters. She said she was going to look into it and to fax just the denial letter to her. Three days later, I got a call of the IHC wheelchair shop, the 'provider' in Insurance speak:

"Hey Steve this is Shane from the Wheelchair Shop."
"Hey Shane. I'm working with the insurance company. I hope to get payment to you soon. Can you give me a couple weeks?"
"Well, um, that's why I'm calling. We got this weird letter from Aetna today. It says, 'After a voluntary self review, we have determined that all wheelchair claims are covered and we have approved the purchase of the recently specified replacement chair.'"
"Holy Toledo! That's awesome! I know exactly how that happened and it had nothing to do with a 'voluntary self review'."

I called Zelia Magliozzi in Novell Benefits and thanked her to the ends of the earth. She simply said that it shouldn't be a problem any more, chuckled a little, and said goodbye.

So long story, shorter, I'm writing this post in a new chair that fits absolutely perfectly. It's got a light titanium frame with the right push-rims. But most of all - IT FITS! The center of gravity is exactly where I need it so I can push hard AND still wheelie when I want to!

I still have the old chair. But the axle completely failed, the brakes are worn out, the bearings on the right caster are shot, the upholstery is ripped and the solid core tires have worn flat. But other than that, it's still a good backup chair. ;-) This is a good thing to have. Because when one of the caster tires completely ripped off once, I was stuck at home for two days. Now I have no excuse. :-)

There you have it. Up to date on all things wheelchair. I'll try to write a little more about the rest of life. Ta Ta for Now.

Another Anniversary?!

2010-03-10T10:53:00.010-07:00

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.

2009-04-17T23:03:00.001-06:00

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

2007-05-06T19:51:00.000-06:00

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

2007-04-15T16:19:00.000-06:00

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

2007-03-25T16:09:00.000-06:00

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

2007-03-24T13:39:00.000-06:00

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

2007-03-24T12:26:00.000-06:00

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

Open Letter to Novell

2007-03-24T12:09:00.000-06:00

March 9, 2007

Friends,

It was one year ago today that I walked out of this building for the last time. I would learn later how you each learned of the accident and what your feelings and reactions were. What I saw, and will always cherish, was the immediate, personal and collective responses that, in many ways, saved me and my family.

That initial support and caring for your injured friend has changed and progressed as my condition has changed and progressed. Your gifts, cards, letters, hospital visits, prayers and faith are forever with me in my heart and memory (and a couple big scrapbooks!) But what has truly changed me is the love and acceptance you show to me as I wheel around amongst you every day.

After one year of living with paralysis, my family and I are approaching a new normal. Changes and adjustments are smaller and less frequent. I am expecting that elements of grief will linger for a while longer as various elements of loss are briefly brought into the foreground. But beside those few light shadows, the landscape of my life is filled with happiness and evidence that life is worth living to the fullest - even if I live it sitting down.

With Warm Regards,
Steve Townsend