Fresh Perspectives

The Golden Rule

I recently watched a TED talk by Karen Armstrong.  She advocates that the “Golden Rule”, not convoluted dogma, should be the basis for all religion.  Imagine if all of us did our best to follow that Golden Rule; “Do unto others as you would have them do unto you”! 

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Disability - A Realistic View

Amy Dunaway-Haney is the 2003 recipient of the Muscular Dystrophy Association National Personal Achievement Award.  Like me, Amy has Limb Girdle Muscular Dystrophy and uses a wheelchair.  She teaches high school spanish, and takes her teaching seriously!  Check out her Spark Enthusiasm website.  In an MDA publication, I found an interesting quote from Amy;

"We have our savings account, my husband and I, and then we have our van/wheelchairs account," she explains. "People think that the hardest part of having muscular dystrophy is not being able to be a cheerleader and not being able to run. But for me, one of the hardest parts is just being able to afford it."

"If you want to be a vital, working person or be out and about, doing your thing, it takes a lot of money," she adds. "You either have to be really impoverished or you have to be really loaded just to get around and be able to work and do all the fun things you'd like to do."

My story is similar.  In 1998, when I first began using a wheelchair full-time, I needed extensive home modifications, an electric wheelchair and independent transportation for work.  Without financial help from my state office of vocational rehabilitation, the transition and continuation of employment would have been impossible.  Even with that help, my cost was over $22,000.  My 2 boys were in their early teens at the time, and ours was and continues to be a one-income household.    11 years later, I’m in the same situation; new van, more home modifications and an expensive rehab-style wheelchair.  Even with financial help, I’ve had to incur long-term debt both times in order to pull this off.  Plus, I pay $60 per week for attendant care and all repairs to adaptive equipment; in addition to a mortgage payment well past my retirement age.

Again, Amy and I both love our work and want to continue working and remain contributory to the system.   The alternatives are long-term disability, Medicaid and fully paid attendant care; unnecessary extraction from the system rather than contribution!  As Amy said, you need to be either impoverished or wealthy just to get around.

Neither of us are complaining, but the fact is that being disabled is expensive.  The cost to society of keeping people with disabilities working is far less than the cost of the alternatives.  People with disabilities generally want to be able to pursue the same opportunities others can.  Right now, that pursuit is costly!  Systemic change is necessary.

Wisdom of an Old Dog

Back in February 2008, we adopted a 12 year old dog named Copper.  He is a wonderful old fellow who is enjoying his retirement home to the fullest.  There's a bonus for me as well; owning Copper has been instructive.  Comparing his way of living to my son's puppy's outlook provides a lesson about zealotry.

1. Copper isn't motivated by the insignificant.  Puppies, on the other hand, are motivated by everything.  Copper is  selective about his directing his attention.  He doesn't crowd his brain with the unnecessary.  We shouldn't either! 
2. Copper lives entirely in the moment.  He thoroughly enjoys his food, his sleep time, his play time and his interaction time with his human caregivers.
3. His hearing has gotten progressively worse.  That doesn't seem to bother him in the least.  Copper rolls with what life presents and isn't the least bit concerned with situations he can't change.

Three simple concepts; PRIORITIZE, ENJOY AND ACCEPT!  It works for Copper, and it can work for us.

How Full is your Bucket?

Today, I received a complimentary copy (from Gallup Press, Cave Henricks Communications) of the book How Full is your Bucket by Tom Rath and Donald Clifton.  The original book was published in 2004, and this is the anniversary edition.

I read the entire book in about 45 minutes.  It uses the "Dipper and the Bucket" metaphor to illustrate the power of the positive, and it does so magnificently!  It is a deeper study of the words in the Dale Carnegie book How to Win Friends and Influence People, "Be hearty in your approbation and lavish in your praise, but do so sincerely".  It seems our entire society is rooted in attempting to change behavior through negative means.  This book is a shining light of change.

I will be purchasing this book for my co-workers.  And, I would recommend it to everyone as well.

Driving with a Disability

I'm going through a process of a new wheelchair, new van, and home modifications to accommodate my current and future needs.  Today was interesting!  Unlike my current situation, I'll soon be driving from the wheelchair.  And in order to accommodate my needs for the next 10 or so years, I'm converting to an electric brake/accelerator system, and horizontal steering with zero effort.  These are known as "primary" controls.  As a result of the change in primary controls, the "secondary" controls will change too.  I'm looking at a computer controlled modular system to handle things such as lights, turn signals, gear changes, wiper controls....all of the secondary functions. 

The picture above left shows the hand control I currently use (past 11 years).  It is called a right-angle hand control, and is basic and simple.  The new system is similar, but involves electric assist and is mounted to the immediate left of the driver at arm level.

Today, I did some real on-the-road driving using this system in a training van.  Jim Keller, owner of Keller Wheelchair Lifts, is the driving teacher and an expert in the systems available today.  After a series of adjustments, we developed placement criteria for equipment, and I got to drive with the controls.  It went very well!

If any of you readers are going through something similar and you are apprehensive, please do get in touch with me.  What I'm doing comes down to one mental aspect; the ability to accept and embrace change.  I've learned the hard way, folks.....NEVER let fear lead your life and learn to love change.

Timeless Music!

Some things are just timeless. I'm a fan of Eric Clapton, and I love this rendition of "Sweet Home Chicago". Check it out......

Memorial Day

Today, we commemorate the men and women who died while in military service to our country.  These people faced the ultimate fear and paid the ultimate price!

My Dad, who died several years ago, served during WWII in the Army Air Corps.  On a few rare occasions, he spoke of some of his experiences, and of comrades who paid that ultimate price.  Most people who witnessed the bloodshed never spoke of it again.  There is nothing more devastating than war.

Amid all of today's turmoil, corporations bigger than government, an economy in trouble because of greed, a seemingly complete lack of ethics among elected officials, we all need to remember those who died for us as well as those who survived.  No matter our political views, we need to be thankful for the men and women who served before and who serve now.  

Today, I remember and I'm thankful!

Bad Rap

We have all heard the stories about the health care professionals who don't seem to care.  I've been going through a process of a wheelchair fitting, a driver evaluation, and a fitting for a foot brace.  Hence the reason for my hiatus from blogging.  But my experience with health care people involved has been gratifying!  Every person I've dealt with, including Occupational Therapists, Physicians, Nurses, Receptionists and support people, have all become advocates for me in this transition.  The person who engineered my wheelchair and complex seating told me that the wheelchair "belongs to me"!  He takes every problem and request I have personally.  Without these advocates, this transition would be difficult at best.

I see the same advocacy among people with disabilities.  We watch out for one another!

Remember that health care professionals have a very difficult job.  Treat them right, because they perform a service none of us could live without.  And sometimes, they get a bad rap!

"Coach"

I admire coach John Wooden.  Times may change, but principles never, ever change.  Coach Wooden exemplifies principles.  Check out this TED talk by the coach himself.

Panic Button Syndrome

Several weeks ago, I had an overhead patient lift system installed in my home.  The company that provided it gave my son (attendant) and I a one hour training on hooking up the sling and using the lift.  The vendor did an excellent job, and I became comfortable using it with the trainer at the controls.

A few days later, we decided it was time to try it out.   There was only one problem; we failed to remember exactly which loops hooked where.  We took a guess and of course, our guess was wrong.  I was lifted out of my wheelchair, and was sprawled out like an unfolded lawn chair!  When they lowered me onto the bed, I became forced to a lying down position, and we ended up unhooking the sling and forgetting about the whole process.  Pardon the wording, but the episode pissed everyone off!  That day, I was a bit despondent and imagined the worst case scenario; we installed a very expensive system and it doesn't work.  I spent the entire day in that negative mind-set.

It's funny how a night's sleep can change your outlook.  The next day, I remembered the words of Dale Carnegie in How to Stop Worrying and Start Living.
How to Face Trouble:
1.  Ask yourself "what's the worst that could possibly happen,
2.  Prepare to accept the worst,
3.  Try to improve on the worst.

That formula is so simple, yet it's magic when applied.  I changed my mind-set and remembered that I would have a wheelchair seating expert at my house within a week.  When he arrived, I asked him to assist us in hooking the sling, which he gladly did as part of his visit.  Of course, the system worked as intended.  This time, we marked the loops.

As I look back on the situation, I realized that I was bitten by Panic Button Syndrome.  For me anyway, my first reaction is generally to carve out the worst case!  But after reflection, I found out that my first reaction was entirely out of proportion with reality.  I believe many of us have the same tendency. 

So now, I try to remember Carnegie's words and let rational thinking into the process when things go wrong!  Hopefully, I can get a handle on Panic Button Syndrome.