My "Full Story" for SCI Support Groups

Originally Posted 4:02 AM 1/22/2009
Comprehensive Update 6:30 AM 12/6/2009
Slight Update: 4:16 AM 4/7/2010

Hello from a C1-2 Quadriplegic!

My name is Bill Miller; I am 33 years old and live in Central Florida (Leesburg).  For the past 12+ years, I've been paralyzed from my neck down and living life as a ventilator-dependent quadriplegic.  My accident involved alcohol, but nonetheless, was just a simple trip and fall in my college bedroom that dislocated C5 and C6.  The dislocated vertebrae bruised my spinal cord, which caused my paralysis, and after two surgeries, my injury level ascended from C5-6 to C1-2, which as you probably know is essentially the same level as the late Christopher Reeve.

I'm considered a C1-2 complete injury, which is about as high as possible, so in theory, every other spinal cord injured person has either the same level of function or more than me.  So my thoughts are that if I can accomplish what I'm about to share with you, then any SCI person should be able to succeed similarly, or in whatever challenges they choose.  So I hope you find my story encouraging.

When initially injured, we all probably think of the same thing... when will the "cure" get here?  I certainly did, but that is a question with no clear answer.  As of now (in late 2009) it appears legitimate therapies that restore useful function in paralyzed people MIGHT be available in as little as three to five years.  I fully believe I'll regain significant, useful function, and walk again, BUT... whether it's 3, 5, 10 years, or more... what about now?

Time Flies When You're Having Fun

After rehab and getting "settled" at home, I realized the best thing to do would be to get busy doing whatever, whatever I could considering my physical limitations.  I wanted to get busy doing things to see how quickly time could "fly" for the years I'm going to be paralyzed.  That started with learning to operate a computer by voice (actually, I also had to learn how to speak well with the ventilator).  With voice software, I can do just about anything on a computer from playing games to being productive.

I have voice commands that enable me to: play solitaire, play hearts, play minesweeper, do sudoku puzzles (which I love:), do email, surf the Internet, read the news online, read and participate on message boards, follow my favorite sports teams, shop online, research anything in the world, and work with just about any application -- I can even edit photos by voice.  I did movie reviews for our local newspaper, which was a lot of fun and my first post-accident job.  I had to stop doing movie reviews after about two-and-a-half years because I wanted to pursue other things, specifically, these four things: (1) doing speaking engagements, (2) building websites, (3) developing a way to bowl, and (4) resuming my education.

 
Speaking Engagements

People are often surprised that someone who is vent-dependent and paralyzed from the neck down is a positive person who is intent on "living life" and doing what I can to be productive (personally, I'm trying to do God's will, which I believe is helping people).  Some people who see me in this big chair with the vent on back (and don't know me) might, naturally, feel sorry for me -- which is what I DON'T want! :-) So to share my story, I put together a base presentation which I now call "healthy perspectives and overcoming challenges" which is a message I can tailor to just about any group of adults (and even adolescents:). 

Everyone will face challenges in life, some daily, and sometimes it takes a healthy perspective in order to conquer life's challenges.  Three big challenges I faced after my injury were: (1) not being able to talk, (2) not being able to eat, and (3) not being able to breathe at all on my own.  I now talk well, eat a normal diet by mouth, and can breathe for over 4.5 hours on my own (feel free to contact me for details).  Overcoming challenges is a message that was/is well received and needed at Anthony House, a homeless shelter which has a 4-week "self-help" program for the adults.  I've been a regular speaker at Anthony House, and have spoken with church groups, school groups, service clubs like Rotary and Kiwanis, Chambers of Commerce, and also at a few conferences.  I've done more than 100 presentations since the year 2000.  Here's a picture of me at Florida Hospital Waterman giving a presentation for them titled: Where I Now "Stand" -- The View from a Power Wheelchair.

 
Building Websites

I wanted to learn how to build, design, and edit websites, which I did, starting with my own which is: LookMomNoHands.net (you are on it:).  I designed my website to both tell my story, but more importantly, to hopefully be a resource for other disabled people, especially quadriplegics and vent users.  When I was initially injured and in rehab, we couldn't find a whole lot of info on life as a C1-2 quadriplegic, and we SCI people are our best sources of info, so I wanted to put mine out there.  I also have done several websites for family and friends and have done 12 websites altogether (ten are current).  It's fun, and it's a way I can do something for my family and friends who do so much for me.

 
Developing a Way to Bowl

My Stepmom saw that I could drive my wheelchair very well and knew there must be a way I could bowl. But nothing existed that I could use.  The stationary ramps at bowling alleys do me absolutely no good -- because I can't physically participate in executing a shot with one.  So we wanted to develop a legitimate way I (and other wheelchair users) could bowl.  A retired engineer named Claude Giguere ("G-gair") said he could work with me to develop a way to bowl.

Claude and I both quickly agreed it needed to be an "attached ramp" concept -- like a stationary ramp that could attach to my chair, so I could control the ball and physically execute shots (using my chair).  We built a prototype out of wood to prove we had a viable concept.  That was in 2002.  Claude and I realized that if I can bowl -- someone who can't move or feel anything below my neck -- then ANY wheelchair user should be able to bowl.  In 2003, we found a strong businessperson who agreed that other wheelchair users should also be able to experience the fun and joy of bowling, and so Claude, myself, and Vincent Tifer formed a company to try to get wheelchair users (back) in the game of life.  We are a company founded by three people with disabilities, for people with disabilities.

Today, our company is known as MGT, which is short for Manufacturing Genuine Thrills, and our bowling device is called the IKAN ("I can") Bowler®.  Ikanos is a Greek word that means enable, and we wanted to enable wheelchair users to say: "I kan bowl!"  The bowling process with an IKAN Bowler® is the same process able-bodied bowlers perform: setup, then physically approach and release the shot while stopping short of the foul line.  The United States Bowling Congress (USBC) agreed that our process is the wheelchair equivalent to able-bodied bowling, so they sanctioned the IKAN Bowler® for league and tournament play -- any league or tournament any where -- bowling with and/or against able-bodied bowlers or fellow IKAN Users.

What exactly does all this mean?  We have a FUN, social, therapeutic, and recreational activity that essentially ANY wheelchair user can do with his/her friends, family and/or caregiver(s).  We CAN compete with and BEAT the people we bowl with and against -- on a "fair playing field" for both able-bodied bowlers and IKAN Users!  I've bowled 10 games of 200 or better with my highest score being 221.  I gotta say, that's quite good, but not as good as the overall world record for dynamic wheelchair bowling, which is a whopping 243 by a C4-5 quadriplegic named Jon Musgrave in Colorado.  We also recognize records in different categories, including one's reason for wheelchair use (SCI, Muscular Dystrophy, Cerebral Palsy, etc) and one's method of controlling his/her wheelchair (joystick, sip-and-puff, chin control, head array, manual, etc) and we have female and male categories for each.  The records are linked on our website, ikanbowler.com -- you can see video and checkout our products there too!

Veterans who use power wheelchairs -- I don't want to jinx it, but we are close to obtaining a Federal Supply Schedule that can help you get an IKAN Bowler and/or IKAN Soccer Guard (for playing power soccer) through your VA -- at no cost to you!  Contact me or us for details!

 
Resuming My Education

I was injured literally two days before I was to begin my senior year at the University of Florida.  I was going to finish my bachelor's in mathematics, and continue and earn a master's degree so that I could teach on the college level.  I've been a Gator fan as long as I can remember, and I've always wanted to graduate from UF.  So I got busy doing things while "waiting" for UF to offer an online program I could do. 

In 2004, I learned that UF was offering a nationally-ranked bachelor's degree online in business.  Switching majors required four prerequisite courses which I took online at St. Petersburg College.  I thought it was "meant to be" when I saw that my first day back to school (online) would be on the (seventh) anniversary of my SCI accident.  I graduated with honors from UF on August 9th, 2008.  I plan to pursue a Master of Science in Entrepreneurship (MSE) also online from UF, and believe I'll teach collegiately -- online, in a classroom, or both -- whether still paralyzed or not.  I plan to begin the MSE program in February 2011.

I believe anyone can go back to school -- online or in classrooms -- from grade school through college.  Each school should have "disability resources" which can provide you with appropriate accommodations to be successful.  So, if you want to resume your education, you can, and it's a good way to prepare for when the potential "cure" gets here.  For more on how I resumed my education, click HERE.

Conclusion

I wrote this to share with SCI groups because I want SCI people to be happy.  I believe being happy is a choice we can all make, despite the challenges that come with our paralysis.  I also wanted to share my strategy for making the time "fly" until the cure arrives -- get busy having fun and/or trying to prepare for when the cure does arrive.  When I can control my arms & legs again... I don't know if going back to school would be at the top of my priority list, so I want to "complete" my education first.  While doing so, I also want to enjoy life and get out and socialize from time to time, which is where the IKAN Bowler® comes in.

Power wheelchair soccer is also available, and our company also sells the best soccer guard (our mounts work with both the bowling and soccer attachments).  Most power wheelchair users know about soccer, but not bowling.  We have a group of power wheelchair users here in Central Florida and call ourselves the Quad Squad.  We bowl together two Saturdays a month.  But anyone could form their own local Quad Squad if you so desired.

If you're interested to know even more about me, I hope to have a book coming out in several months that is part semi-autobiography (largely focused on my post SCI life) and also part "self help" strategies for both able-bodied and not exactly able-bodied people.  In the meantime, feel free to explore my website, and contact me with any questions or comments.

No worries -- and thanks for reading about my story!

Sincerely,

Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
My blog: http://powerwheelchairusers.blogspot.com
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net

 


 
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