My "Full Story" for SCI Support Groups

Originally Posted 4:02 AM 01/22/2009
Multiple Updates 4:58 AM 05/05/2012
  

Hello from a C1-2 Quadriplegic!

My name is Bill Miller; I am 35 years old and live in Central Florida (Leesburg).  For over 14.5 years, I have 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 at 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 May of 2012) it appears legitimate therapies that restore useful function in paralyzed people MIGHT be available relatively soon.  I personally believe such therapies will come to fruition between the years 2015 and 2020.  And I fully believe that I will regain significant, useful function, enough to be much more independent if not fully independent again, BUT... whether it's 3, 4, 8 years -- or more -- what about now?

Time Flies When You're Having Fun

After rehab and getting "settled" at home, I realized that 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 and watching shows 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.  And with the November 2011 update, I added two portions below about finding happiness and finding love.

 
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, a large part of which I believe is helping people).  Some people who see me in this big, power wheelchair 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 and do 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 150 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, and 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 (eight 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 that 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 that 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 anywhere -- 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 18 games of 200 or better with my highest score being 255, which is actually the overall world record for dynamic-style wheelchair bowling.  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 can get an IKAN Bowler® through the VA -- for little or 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 for 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 am currently pursuing a Master of Entrepreneurship (ME) online from Western Carolina University, and believe I'll teach collegiately -- online, in a classroom, or both -- whether still paralyzed or not.  I began the ME program in August, 2011.

With the desire and appropriate support, I believe almost anyone can go back to school -- either 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 should be able to, 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.

 
Finding Happiness

A graduate school assignment was to write an article on something about which we can be considered an expert. I extrapolated my personal circumstances into a broader context to write: Finding Happiness After Personal Tragedy. It's available online for free.

 
Finding Love   

<-- click for caption and to enlarge!

Candidly, my plan was always to get busy building the best life I could, given my circumstances, and if a very special girl wanted to join my life, I would find time and room. I wasn't actively looking for a girlfriend (or potential spouse) but I was smart enough to keep my eyes open. In February of 2011, a fantastic young woman emailed me an innocent message on Facebook and I was smart enough to write back. Lots of conversation resulted and mutual interest developed, and she actually came down from Ohio to meet me in June, and while she was here for 9 days, we officially became girlfriend and boyfriend.

She currently works in the Ohio School System as a Certified Occupational Therapist Assistant, so for now, we're having a mostly long-distance relationship (Skype helps a lot) but she visits when she can.  She visited for 8 days in August, 8 more over Christmas break, and when she came back over her spring break, we got engaged!  Given my physical circumstances, I always knew it would take someone very special to look past the wheelchair and paralysis.  Lisa & I both believe that God brought us together and that we have a bright future together.  Finding love is possible, despite even high-level SCI.

Conclusion

I wrote this to share with SCI groups because I want SCI people to be happy.  I believe that being happy is a choice that we can all make -- despite the challenges that come with our paralysis (I have some good quotes on my Facebook info page -- feel free to befriend me HERE).  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 and 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 be productive, and enjoy life, 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 usually 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, my "Meet Bill Miller" page has 6-minute video I recorded in April 2012, and a detailed November 2011 magazine article about me.  Also, I hope to have time to finish writing a book over the next year (or so) that is part 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!  God bless!

Sincerely,

Bill Miller :-)
C1-2 Quadriplegic with a 255 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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