400 years ago

What seems like 400 years ago, I broke my fucking neck… Hell I don’t even remember the actual count after all these years (Dec 18, 1968… YOU figure it out).   Now wait right there, I’m saying this for perspective, not pity (something I ALWAYS hated).  As I always say, “What A L-O-N-G Strange Trip It’s Been!”  And after 400 years, I guess I can say I out lived what most people (including myself) figured that I would… I told my wife when she first moved in with me that I probably wouldn’t live past 50.

I have come to wonder why I’ve been so damned healthy all these years.  I recently had to change my “family doctor”...  I had my other doc trained very well; she KNEW that I knew my body.  My new doc’s a dude, & sometimes they don’t listen.  But he did!  I told him even after 400 years I have never had a major pressure sore on my ass from sitting on it all day.  He asked how where you able to do that?  And I said what I always say, “I did it on purpose.”

When I first broke my fucking neck, I didn’t know ANYTHING about this thing called disability.  I knew that I needed to change some of my priorities in life.  I knew that I wasn’t going to whine & cry.  I knew I didn’t want ANYONE to pity me.  I knew that WHATEVER needed to be done, I needed to learn what that was & do it myself or make sure it got done by SOMEONE. 

Which brings us back to my lack pressure sores…  I owe lifelong awesomely tough skin to my parents, who for years woke EVERY night to turn my ass in bed, so I wouldn’t develop any pressure sores.  Now, many years after I have left home, I sleep all night on my back (on an awesome mattress)… with no ill effects.  Maybe all those years of taking care of my skin toughened my ass… or maybe it’s true what one rehab doc told me, “Steve, you’re just too ‘hard-assed’ to develop pressure sores!”  Which confused me because I’d always been told all my life that I had an intellectually superior ass (or something like that).

At any rate when I first broke my broke my fucking neck, I was told that most quadriplegics lived only 1 or 2 years, then 5 years, then 10 years.  Even though medical science has certainly changed over the years, I’ve never been the kind of person who needs a lot of medical care.  NOW, I go in to see the doc every 3 months, but only to check on my type 2 diabetes… which of course runs in the family, NOT because I broke my fucking neck!

When I think of medical advancements, I often think of a very beautiful young classmate who wasn’t as lucky as I.  Jeri Kerns was a VERY energetic girl… kind of a Tom-boy, but definitely a gorgeous young lady.  Was the difference because of medical science or maybe she had some other medical complications?  I don’t know.  She broke her back & I broke my fucking neck… we both messed up our spinal cords.  I was just luckier.  All I can figure is that God wanted her with Him, and I was left here another 400 years.

POST SCRIPT

My reference to: “I broke my fucking neck”, comes from the fact that when I meet people & they ask me how I came to be a person with a disability, I’ve ALWAYS wanted to say “because I broke my fucking neck!”  Not to be rude… just to see their reaction.  I would never do that, because I’d rather have a person engage me in that type of discussion, than to just sit & stare.

BUT, I have a very sick sense of humor, so I’m ALWAYS tempted.

PERSONAL TRANSPORTATION

One of the more frustrating things about becoming disabled is the loss of independent transportation. For myself, I was very blessed to have many friends and family members who offered to help me get out & about.  Being a teenager, it was important for me to attend every football & basketball game I could.  But, Momma raised 4 very independent minded boys (OK, Rowdy, Loud, Obnoxious, Hard Headed & Unruly may also have been used to describe us).  At any rate, I REALLY wanted so much to get right back out there & drive again.

 I have to admit that in the late 60’s & early 70’s architectural barriers usually prevented independent integration in the activities at hand (but that’s a whole different topic of discussion).  I worked very hard to become as independent as I could be.  Being independent minded, I was able to let my needs be known, so I could continue being active in the community.  But I didn’t REALLY feel independent until I got behind the wheel, again.

 Mobility Equipment Dealers Association (MEDA) came up with the idea of sponsoring the National Mobility Awareness Month, as described below:

Starting this year, the month of May is recognized as National Mobility Awareness Month. The purpose of this declaration is to bring attention to and show the world how people with disabilities can live an active, mobile lifestyle. Supported by national spokesperson, Mike Savicki, and utilizing the National Mobility Equipment Dealers Association network of members, the goal of National Mobility Awareness Month is to educate the public that:

 • People with disabilities constitute the 2nd largest minority in the United States.

 • Over 18 million people in the U.S. and Canada have mobility issues.

 • 6 million of those are veterans.

 • There are mobility equipment manufacturers, dealers, driver rehabilitation specialists and other professionals in your community dedicated to improving the lives of people with disabilities.

 • Automotive mobility solutions are available for people with disabilities enabling them to enjoy active, mobile lifestyles.

 One problem cropped up.  There were some many people with disabilities who had the need to acquire or upgrade their accessible vehicles that MEDA’s server was overloaded the first day of April.  So they upgraded their server and that crashed, too.  All month long, their server failed on a daily basis.  Although MEDA sought to inform the public that there are available transportation resources in the community, the disabled community has (hopefully) educated NEDA that the financial resources to PAY for accessible transportation is an even GREATER need. 

 Being disabled comes with a huge price tag.  Above & beyond the normal daily needs that we all must meet (housing, food, utilities, etc.), many people with disabilities many also have personal care expenses, personal mobility equipment, medical equipment, etc (as well as the repair cost of maintaining the special equipment).  All those additional expenses often overshadow the need for accessible transportation (in terms of daily survival).

 In looking at some the other people vying for the 3 new accessible vans, it is very clear to me that I am by far NOT the most needy contestant.  I fought the good fight.  I refused to play the pity card or sacrifice my self-dignity for the sake of a new ride.  In scanning the other stories, I see that there are MANY people with WAY more votes than I.  I’m OK with that (although I was hoping to break the 500 mark).

 I have always said that everyone has a story.  I encourage everyone to read some of the stories of my brothers & sisters with disabilities.  Their strength in facing their own challenges will surly encourage us all to give it our best, as we face our own challenges, no matter how large or how small.

http://www.nmeda.com/mobility-awareness-month/local-hero-contest

peace,
steve

Isn’t That SPECIAL!

Over the past 43 years, people have reacted to me in many ways. The two extremes are those who seem to treat me as if I don’t exist, and those who place me on a pedestal.

There are times when I’m at restraint, the waitress looks to the person I’m with to ask what I want. In these instances (and others in the community), I regard them as opportunities to
educate people. I don’t mind people staring at me as I open doors at the Mall or other stores. In fact, it’s kind of fun watching people (especially little old ladies) freak out as I sit there in my wheelchair and hold the door for THEM!

When I’m treated like I’m special, I become a little uncomfortable. When they use terms like “HERO”, well, I’ll just say that it’s not a word that I’d use to describe myself. I just try to be an Ordinary Average Guy.

Even though I'm a little uncomfortable with the "HERO" label, there is a contest to give 3 new wheelchair accessible vans to "Local Heros." My current van is starting to become unreliable... got stuck last week at the bowling alley & had to pay $60+ for the 10 mile accessible cab ride home (PLUS $50+ to fix the thing PLUS I gotta take it in again next week to fix something else), but it was late at night & you do what ya gotta do. Anyway, vote for me every day the rest of the month and use Promo Code: 995, 818 or 989 for extra points! Vote once every 24 hours through the end of April (try each code once, then vote without a code). Help me get a new vehicle!!!

AND SPRESAD THE NEWS!!!

thanks,
steve

Here’s some info about the contest

National Mobility Awareness Month National Mobility Awareness Month is a proclaimed month that will be celebrated throughout the month of May. The purpose is to educate the public that people with disabilities constitute the 2nd largest minority group in the United States. Over 18 million people in the U.S. and Canada have mobility issues.

This website is where we share the stories of people with disabilities who are dealing with and overcoming their mobility challenges. We are also asking people to submit their stories to be showcased by national and local media over the upcoming months. Favorite stories will be voted on by your friends, family and peers, and the winners will be awarded a new customized wheelchair accessible vehicle.

http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Here’s something that a friend wrote about me & my wife when she forwarded my email asking for votes:

Hello sweet friends and family! Please take just a moment to read this important message and help my dear friend Steve win a new wheelchair accessible vehicle (which he NEEDS). He might be uncomfortable with the label "hero" for himself, but I am not. For those of you who do not know him...Steve and his wife Luanne are two of the most amazing individuals I have had the pleasure of knowing. Steve was paralyzed at the age of 16 and has made it one of his lifelong endeavors to teach others that a person with a disability can (and should) be just like everyone else. He married Luanne who has got to be an angel among us. She is like no one else I know! Luanne works at TLC, a Children's Therapeutic Learning Center. They adopted not one, but two children with developmental disabilities, Mark and Michael. Years ago I was lucky enough to work with both of them as a Life Skills Teacher (mostly worked with Michael though) and I learned as much from them as they hopefully did from me. Sadly, Mark passed away a handful of years ago due to complications of lifelong health issues. He is missed dearly by us all. Michael (who is now 26 I believe), works part time at Petsmart in Kansas City and we talk regularly. He is part of our family. They all are and we love them whole-heartedly.

Together, they live quite a life of service - so giving and kind and are always there to lend a helping hand to others. Steve is such a kind, considerate, selfless man and quite the comedian! I am blessed to have him in my life and our family's lives. I wish this was more than a contest for a new van, as he deserves so much more. Steve and Luanne truly shine their light in this world and are an example for us all. I know someday he will be rewarded tenfold though for all the love he shares.

Please take just a second out of your day and click the link, vote for Steve and enter Promo Code 989, 995 &818. http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Also, it would mean the world to me if you would please share this email with all your friends and encourage them to vote as well. I will be posting it on Facebook too which is another
great way for us all to share it. I would love to send this message around the world and get him that van. It is just a small fraction of the appreciation he deserves for being such a wonderful person!

Here is the link again: http://www.nmeda.com/mobility-awareness-month/heroes/missouri/kansas-city/549/steven-hurst

Thank you!

Love,
S---- K----

My Bubblebath

OK, I wanted to post new stuff periodically, but here (again) is something I wrote a few years ago.

January 19, 2002

While watching the TV show Friends, this past Thursday, I saw Chandler learning that a bubble bath can be a nice soothing way to pamper himself. On Saturday, like Chandler, I found myself lying peacefully in my tub. My favorite Classic Rock and Roll station was on the radio. Michael was at his Saturday morning Karate class. Mark was in his room watching one of his train videos. I was able to just lay there with the bubbles caressing my soft supple skin... feeling my muscles relax in the warm bubble bath. Wow, it has been such a long time since I was last able to take a long soaking bubble bath... I didn’t realize how much I’ve missed such pleasure.

Usually, I transfer from my wheelchair onto my padded, though not very comfortable, tub bench. Since I have no sitting balance, I have to hold on as I use my hand held shower. Indeed on this day, I transferred onto my shower bench to take my shower, when snap!... The back rest broke off and I fell straight back onto the bottom of the tub. Luckily, the part of my body that hit the hardest was my head... and we all know how hard of a head I have! LuAnne had just come into
the house from dropping off Mike at Karate, when she heard a loud crash. She opened my bathroom door to see me laying on the backrest in the tub, and my legs on the seat of my shower bench... what a vision. LuAnne asked if I got knocked out... if I did... I couldn’t remember... or... something like that.

Getting the backrest out from under me without cutting me on the jagged edges of the broken aluminum tubing, "rolling" me out of the tub, scooting to the bed, hoisting me on cushions from the couch, and "rolling" me into bed was a fun challenge that all quads should experience once in a while. But, I’m not sure that I’d recommend getting into a tub that way. All in all, I think
I’ll try to avoid the nice soothing bubble bath, and keep taking my boring showers.

postscript - After I broke several of the cheap aluminum bath benches, I started looking for better made ones... didn't find one. When we were kids dad often took our toys & other broken stuff to work & bring them home fixed. Dad even had a wheelchair lift made from "spare parts" at work. So my brother, Jerry, took "spare parts" from work & had some buddies help build a stainless steal bench for me (with adjustable legs & everything). Then he had a buddy who did upholstery stuff for boats make the padded seat & backrest. Now I have an awesome, durable & easier to transfer onto bath bench.

THIRTY YEARS AND STILL (not) KICKING

Every year I celebrate the anniversary of when I acquired my disability. Sometimes, I go out for dinner, or a movie, or for adult beverages, or to donate to young ladies' college funds (1 dollar at a time), or just go out & arrive where I may. On the 30th year I celebrated by writing: "Thirty Years and Still (not) Kicking" (December 18, 1998)... this is what I'd like to share with you today. This was not meant to be the story of steve... that would be both longer & more boring. This is just about why I celebrate this occasion & about my attitude about my disability. I wrote this on the 30th year, this year I'm celebrating my 43rd year (just replace 43 with any mention of 30). So, enjoy and if something sounds strange, just laugh... I often think I'm a funny guy.

THIRTY YEARS AND STILL (not) KICKING
December 18, 1998

Today I celebrate thirty years as a person with a disability. At the time of my automobile accident, I was a sixteen-year-old kid who certainly didn't want to work too hard in school, or
think about the future. Like most kids, I really just wanted to have some fun. Then at the age of sixteen, the day after I got my driver's license, a mother's worst nightmare happened... I had a very serious automobile accident. I wasn't drinking... I wasn't driving fast... there wasn't another driver involved... no passenger distracted me... no pedestrian or animal that I had to dodge... there was just me, a slippery road and a very steep hill. But of course, it WAS the
other guy's fault! Luckily, I was knocked out and don't remember anything about that evening... one week before Christmas.
Three daze (days) later, I woke up in the middle of the night. It was dark. I couldn't move my head (didn't know I was in traction). Couldn't feel my legs, (let alone move them). I was confused, bewildered, terrified. I thought someone was torturing me. They had me tied down and wouldn't let me up. I didn't know who they were, or why they were doing this to me. I yelled for help. I screamedbloody murder. A nurse turned on the lights and I said that someone had me tied down and wouldn't let me move. She told me that I wasn't supposed to move... that I had a bad car accident and was in the hospital... that I was in traction so I wouldn't move and hurt myself even more... that I needed to stop yelling a waking up the other patients. I said, "Oh my God. Tell the other patients I'm sorry. I didn't mean to bother anyone. I was just... a little...
confused."
I asked what I did to myself. The nurse said the doctor would talk to me about it in the morning... that I needed to just go back to sleep. But I was still confused... why couldn't she say what happened to me. I then realized that besides having no movement in my legs... I couldn't FEEL my legs... I just knew they were gone... amputated... they had me tied down so I couldn't see they
were missing. The nurse assured me that they were still there. But I couldn't feel them... they must be missing. I said, (being from Missouri and all) "Oh yeah, SHOW me." So she lifted one of my legs to show me. I'll be damned, she's holding up one of my body parts... and I don't feel ANYTHING. I was shocked... confused... had MORE questions... was told to hold them for the
doctor in the morning and she left.
I had always been a "pronie"... I was very accident-prone... if something happened to one of us boys, it usually happened to me. I was laying there flat on my back. I tried to raise my arm in the air... and it fell back onto my face... I tried it again and it fell on my face, again... I tried it a
third time with the same result... being rather quick to pick up on things... I decided to not try that again. I just laid there and said to myself, "Steve, I don't know what you did... but this time you really fucked up!"
The next day the doctor came in and told me that I had a skull fracture but more seriously I had a blood clot in my spine that had to be removed or it would have killed me. So I thought to myself... that's cool, I'm not dead and that is the reason why. I asked why I couldn't feel or move most of my body, and he told me that the blood clot (and the subsequent removal thereof) damaged my spinal cord. I thought to myself... the good news is that I'm not dead; the bad news is that I'm paralyzed... I didn't like this good news / bad news joke, at all.

Before the doctor left, I asked if I would be back up on my feet in time to start training for football next year (as if I was a talented jock or something). He said that most likely I would never walk again... ever. So that was the end of my brief career as a tackling dummy.

After everyone left I thought... for the first time in my life... gee, I wonder what the rest of my
life will be like. I made a mental list of all the things I probably wouldn't be able to do anymore... then made a mental list of the things I probably COULD do... I decided the things that I could do were more important than the things that I couldn't do... I made a decision right then that, for the rest of my life, I had to focus on the things I could do and not worry about those I
couldn't do. As time went on, there were things on the couldn't-do list that I figured out ways to do them... and a few things on the could-do list that didn't pan out. But after a while I misplaced these mental lists but kept the concept of not worrying about what I physically couldn't do, and instead focus on exploring different ways to do things.

Thirty years. What a long strange trip its been. What have I accomplished... nothing special... but a lot more than some people may have expected. I got the feeling that people expected me to crawl into a corner... curl up and die. Suddenly, I was "special". People acted like I was Wyatt Earp... you know... the old TV western. The theme song was: Wyatt Earp. Wyatt Earp. Brave,
Courageous and Bold. And why? Because I didn't fold my hand... I have played the cards dealt to me.
I've never been the sharpest knife in the drawer, but I have learned to work hard with the tools I have. I caught up with my class in school after living 6 months in three hospitals. I completed a goal I had before my accident of earning my Eagle Scout Award. My service project was a life long endeavor to teach others that a person with a disability can (and should) be just like everyone else. I was the first person in a wheelchair to graduate from my high school. I went to college and graduated with a three-point average (not bad for a quad who also has a perceptual problem). I was the first person in a wheelchair to graduate from my college with a four-year degree. I was stunned when everyone, including people who didn't even know me, gave me a standing ovation on graduation day. When it happened in high school, I understood that all these kids knew me before I acquired this disability and they were proud of me. When it happened in college, I became very cynical. Was it so far fetched to think that a person with a disability could be successful? Why is it that when others do something its expected of them… but when I do, its so astounding that I can?

To this day, I try to preach that I am many things... a man... a sports fan... a husband... a dad... a sexual human being... a friend... a voter... a driver... a consumer... a bowler... a wanna-be comedian... a pain in the ass... a dirty old man... and... a person with a disability. Having this thing called disability is but one part of me.
Please celebrate life with me on the thirty year anniversary of the day I acquired this thing called disability.
-- Steven A Hurst