Disabled? ... Be More! Don't Diss Your Ability

If you haven’t heard of it, there’s a Gulf of Mexico beachfront park (William J. Rish Recreational Park) in the Florida panhandle, especially designed and reserved for persons with disabilities. There are family and group cabins ($15.00 per person per night), an Olympic size pool and ramp walkways connecting all the cabins and facilities.

WOW! I was ready to Go! Advance reservations were required along with several forms about their many, many rules (like no friends allowed, absolutely no alcoholic beverages of any kind, pool rules, beach rules, cabin rules --- must clean AND mop the cabin, agree to a walk-through inspection prior to check out, etc.). Oh, I also had to send written proof that I was disabled. After a short time, I received the much awaited response. I was approved for a cabin and may have qualified for a possible assignment with the CIA!

With the exception of a hidden speed trap in Willington, FL, our seven hour trip from Sarasota was uneventful. The park was everything they advertized --- and MORE (??). For example, the parking lot was paved with crushed shell and sand, but it was only a few feet away from those new ramp walkways, so my power chair only got stuck twice getting to the ramps. Our cabin was a little “state park-ish,” but was very nice and clean (obviously the previous vacationers knew how to mop). The cabin was comfortably nestled in and behind large sea-oat-covered sand dunes, which were fantastic in shielding us from any possible hint of the site or sound of the Gulf waters. There were two bedrooms. My wife and I took the room with a queen and a king equipped with a lift, multiple adjustable positions and a vibrator --- none of which worked.

The cabin was obviously designed for those with disabilities. The bathroom was open (no door) and the lavatory counter so low it would have pleased even the smallest dwarf. So low, my chair could not get close and my wife was downright unpleasant grumbling about having to do her hair and makeup on her knees.

The weather was incredibly HOT, but the air conditioner kept the cabin nice and cool --- whenever it ran. With a mind of its own, the AC would shut down for extended periods --- usually in the middle of the night. Fortunately, park rules did not exclude profanities, because each time, it took a LOT of four letter words and messing with the thermostat to coax the AC to run again.

Speaking of rules, at check-in we were reminded of the “no alcohol” policy and advised that any violation would result in an “immediate eviction from the park.” You know a beer at the beach or a glass of wine on the deck just goes with my idea of a relaxing vacation. So, I’m not admitting to violation of any rules, but did you know that white wine in a Mountain Dew bottle, red wine in a Welch’s grape juice container and vodka or gin in an ordinary plastic water bottle all look very natural?

The beach and Gulf water was beautiful as I viewed it from the ramp designed to get us over the dunes. However, it was sort of a bridge to nowhere … the bottom end of the ramp disappeared into the side of a sand dune without any type of deck or platform for chair parking. Disappointed, I decided to go to the bay side of the park with nature trails and a water overlook. There, I was greeted with a locked gate and sign “Indefinitely closed due to prior hurricane storm damage."

By this time, I realized why the park is referred to as a “Disabled Park.” So my wife did what any creative female would do --- suggesting we all give up and go shopping in Apalachicola, 30 miles away!

Rish Park has some good features and is OK. But next time, I’ll take the money for gas and a speeding ticket to get a nice beachfront room right here in Sarasota.

It’s been a while since my last post, but the last couple of months have been so full of “life experience changes” that I have a good list of “excuses” I can use for my absence.

In one of my earlier posts, I said that life is a “dynamic adventure" with the only “constant” being change. I also said that we need to embrace and control this ever evolving experience with an affirmative interpretation. You know, that sounded pretty good and uplifting at the time --- BUT, once again I have been reminded that “change” sometimes has such a powerful impact that it feels more like a tsunami than a “dynamic adventure.” And a lot of “change” at the same time --- WOW!  It makes me think of what a friend used to say, “I take one day at a time … unless they all attack at once!”  Well recently, I have experienced so much change (nothing catastrophic) that it does seem like all of it “attacked” at once!

This time, my disability was not the epicenter of the “problems” --- it was just a cluster (deliberate word choice) of lesser events. Nevertheless, I found the changing circumstances frustrating (I couldn’t alter them) and disappointing (they were not what I wanted to happen). The ever evolving experience of CHANGE, which is so unpredictable, was upsetting. Although not of the same magnitude, I was reminded of my feelings after my accident --- facing situations over which I seemed to have little or no control.

While thinking about all this, it finally occurred to me that life may be a lot less complicated than I was making it --- maybe it all just boils down to “Change and Choice.”

As to “Change” I have decided to simply try to accept the fact that nothing is static and everything in the world around me is in a continual state of transformation --- whether I am in agreement or not.

As to“Choice,” it’s a different story. I am in complete control! It is up to me as to how I interpret the changes in my life. I can choose to react anyway I want --- frustrated, depressed, angry, accepting, positive or joyful.

Now I confess … I have attempted to try every reaction to “change” that I can think of. Sometimes, I have found that some anger or generally being pissed off has felt good. However, as many times as I have tried, I must admit that I am a total and complete failure (unlike a very close relative of mine who always seemed to “enjoy” any type of ill health) in finding any permanent satisfaction or enjoyment in a negative attitude, frustration or depression.

So, I encourage my readers to join in my effort to spend less time and attention on the “changes” life gives us. Instead, let's spend more energy on the one thing we can control --- how we choose to react!

Remember, choice always gives us the option to be “down in the dumps” or as “grumpy” as we wish or affirmatively adaptive --- it’s always our Choice!

Can’t figure how to do it myself, but I need a swift kick in the butt for ignoring my own blog advice!  For the last couple of weeks, I have spent way too much time concerned with some disability related complications.  Oh, how easy it is to move into a "negative space" when things aren't going the way you want.  And when you get into that “negative space,” everything seems to suck.  Well, I started to fall into the trap. What a lot of wasted energy!

While wallowing around in that “less than positive” mental state, I did have one good thought about an article published a while back in our ever shrinking Sarasota newspaper. It was about a presentation made by ABC News correspondent and author Cokie Roberts discussing her new book. I remembered a profound reference she had used that now, somehow, seemed to be personally directed to me. She had quoted Jim McDougal who said, “life is not about waiting for the storm to pass, but learning to dance in the rain.”

I doubt that Mr. McDougal was thinking about people with disabilities when he made that statement, but if you think about it, it sure fits our situation. Concentrating on a disability and its limitations (which I hate to admit, I had started to do) seems to be the equivalent of “waiting for the storm to pass”. You know, sometimes it seems like society and our culture expects (or maybe even encourages) people with disabilities to just patiently “wait out the storm.”

Well, that quote became the kick in the ass I needed. It helped me restore a better perspective and recognize that there was absolutely no enjoyment passively waiting on the storm to be over --- so I decided that I’d rather“ dance.” “Dancing in the rain” means I must remember to focus on the good things in life as well as the many abilities I still have and recognize that a full and positive life is possible (even if I do get a little wet "dancing" in the process). 

So, if anyone else needs an “attitude adjustment,” I hope you will reflect on McDougal’s words of wisdom and then join me and get on with writing that blog, riding that bike, tackling that computer, taking that trip, playing that sport or whatever it takes to make sure you’re “dancing in the rain”.

WOW! Have I ever been slow posting this entry and getting back around to some of the follow-ups promised in earlier posts. I feel a little like I did years ago when I failed to get my homework in on time. I do have lots of good excuses but I suspect you, like my teachers of yester-year, really have little interest in them --- so, if ever needed, I’ll save them for my wife (pretty sure she won’t buy them either).  Oh well, sometimes even being a “quad” doesn’t work.

First, a status report on my working relationship with the voice recognition software (Dragon Naturally Speaking) I recently started using (Finger vs. Keyboard). It does do a superior job of listening and accurately transcribing whatever I say. Almost without fail Dragon does its job and types what it hears.  Without judgment, it typed “STOP BARKING” when I yelled at my dog Daisy. It didn’t miss a beat typing my side of a complete telephone conversation when a call interrupted my writing. And it has showed no sign of embarrassment or editorial inclination when typing the creative profanity I used when I was displeased with something I had just written. So overall, the software gets a passing grade … but, I’m afraid I only get a “needs improvement” rating. Guess I really should start making a better effort to use the program’s Common Voice Commands and especially remember the command “stop listening.”

It’s now been a little over three weeks since my neurologist disappointed my wife by using ALL of my Botox (The Beauty of Botox) serum for injections into my uncooperative left leg (I think she may have been thinking about a good use for any “left-overs"). The objective of the treatment is to weaken some of the calf muscles, allowing a lengthening of the heel cord and a relaxation of spasms and cramps. If this happens, walking should be a little easier and hopefully, faster. My heel cord has now started to relax some and the painful spasms and cramps have definitely improved. Now, I will impatiently wait for that magic poison potion to do all of its wonders and maybe pick up a little walking speed.

As mentioned in my previous post, my wife has classified my walking speeds as either “Stop” or “Slow.” It seems that if I get into much of a conversation while walking, I will frequently come to a full stop (it does take a lot of my concentration to walk) --- hence, it’s either a slow walk or a stop to talk. Last week, the same as many times before, I was gently reminded to “quit talking and start walking.”  This time,that verbal nudge caused me to burst out laughing thinking about the phrase,“he can’t walk and chew gum at the same time.” So, I’ve checked it out --- I can do it! 

I know that I emphasize that those with disabilities should always strive to Be More, but walking, talking and chewing gum --- all at the same time?  Well ...... maybe I’ll give it a try!

Ah, the digital age! Isn’t it wonderful that we have all these new goodies to play with and make our lives a little easier? I just got two of these “everyone should have one” items --- a Nook and a Garman GPS.

The Nook was a Father’s Day gift from my two daughters. A Nook is Barnes & Noble's answer to Amazon.com's Kindle. It is a small tablet-shaped reader (looks a lot like the old Etch-a Sketch toy my kids used to play with) that will hold about 1500 books, connects to the Internet, plays music, plays games like chess and sudoku and goodness knows what else.  All of that is very impressive, but for me it does one special trick that I’m really excited about --- it lets me hold it AND turn the pages using my one and only useful arm and hand! Oh, I can now read again in comfort and gone are the frustrating, page turning days that constantly required the big decision --- do I lose my page or do I drop my book.  Usually, I did both!

The GPS will be a life-saver (maybe literally) when I need to refer to a map. Now, while my right arm and leg are very responsible with their driving duties, the left side limbs stubbornly insist on simply “going along for the ride.” That’s OK until I need directions, then the situation sort of resembles the trite references to the “one-armed paper hanger.”  My new GPS has voice recognition and speaks,so I don’t have to manually enter requests or watch the screen. It’s great ---now, only my GPS dare “tell me where to go!”

My Nook and GPS now join my growing arsenal of valued adaptive equipment (although I’m sure most people would never consider a Nook or a GPS as “adaptive equipment,” making my activities a little easier.  On a side note, isn’t it curious that accessibility adjustments, special equipment or equipment modifications are usually considered “adaptive” if used by a person with a disability --- but if the general population utilizes performance-improving items like eyeglasses or contacts or sports equipment (high performance golf clubs, balls, racquets,bikes, water equipment, etc.), they are never referred to as “adaptive”?

Oh well, it doesn’t really make any difference what it’s called or if the general population has classification misconceptions --- if it helps, I say go for it!

A very close member of our family used to say as she aged, “Seems like all I ever do is go to the doctor and patch, patch, patch.”  Well, in keeping with that tradition, yesterday I started on my latest repair, restore and “patch” effort by getting Botox injections. 

No, unfortunately it was not to bring back my youth or rid my wrinkled eyes and brow of those ever deepening wisdom (?) lines.  Although widely used for its cosmetic benefits (wonder if those celebrities and beautiful people know that Botox [botulinum toxin] is the purified form of the poison created by the bacterium Clostridium botulinum ?), I instead had the stuff injected into muscles to prevent them from contracting.

Now I'm not new to the Botox, having had it used to reduce tone in my arm, but I'm really excited about this latest treatment, hoping it will encourage my leg to stay straight instead of trying to bend in unnatural directions that, if successful, would impress even the best of contortionists.

In a few days, the multiple injections (that’s a nice way of saying “a hell of a lot of needle sticks” into the left calf muscles should cause them to weaken slightly and if all goes well, I’ll be walking a little easier and maybe even a little faster.  My wife explains that I have two speeds --- Stop and Slow!  OK, so I do move very slooowly --- but I get there!  After all, my speed is defined by perception (just like my disability) --- it's all relative.  Just think about the story of the turtle and the snail.  Do you know what the snail said to the turtle while riding on the turtle's back?  Wheeeeee!

I don’t expect the Botox results to be as exciting as the snail’s ride, but I’ll let you know soon if I qualify for another speed classification or if I end up with the most beautiful, wrinkle-free leg in town.

I think my visitors may be a little shy about being among the first ones to post suggestions in the new Helpful Hints section.  Since one of the objectives of this site is to exchange ideas and share our problems/questions along with solutions/answers with each other, I’ve decided to “prime the pump” by posting some of my own hints.  Here’s the first one:

SALAD TONGS!  Here's a great inexpensive hint for anyone that has trouble with their hands (holding, gripping, reaching, etc.)  Everyone should have two sets of tongs -- one for the kitchen of course and one for the bathroom. I'm talking about the inexpensive type that has a slight bend. I have found a multitude of uses for them in the bathroom including:

• Bottom wiper - when my hands were too weak and couldn't quite negotiate the distance and strength required to wipe myself, I threaded toilet paper through the holes, wrapped some more around the end of the tongs and did a very credible job. The bent angle seemed to work just perfectly getting around to the places I had trouble reaching.

• Arm pit washer – due to inability to hold a washcloth in my left hand, I can’t get to my right armpit when showering.  I use the tongs to hold the washcloth and with only my right hand I can reach both arm pits (and some other difficult to reach parts of the anatomy) without difficulty. Note: your friends and family will really appreciate this hint more than you do!

• Pick-up helper – seems like I’m always dropping things, but when I’m in the shower, I ALWAYS DROP EVERYTHING. Since I am seated on a shower bench, the tongs are the perfect length to retrieve the soap, shampoo, conditioner, razor, washcloth and the rest of the stuff that insists on visiting the shower floor.  

Important instruction:  Don’t share this hint with dinner guests when you’re serving salad!

WOW!  There are too many to list --- but all are welcome --- this site is for us all!

Since this site is new, I think a little more introduction is in order. As most  with disabilities know, some of us (like me) trigger a lot of curiosity when we meet others for the first time. Understandably, they are usually a little hesitant to ask but always eager to know what's wrong and what caused it.

 In my case, my disability is a SCI (spinal cord injury) that left me quadriplegic (my injury was high on the spinal column at the C3/4 level).  I'm very fortunate since the injury was "incomplete" (the cord was not completely severed) but I do spend part of my time in a power chair and walk a little like the character Quasimodo (left foot dragging behind me).

After explaining the disability, the next question (as many of you know) is usually how it happened. I dread this question because it seems to me that if you have become a quadriplegic, there ought to be an exciting and gripping story describing the event.  Each time asked, I have an almost uncontrollable need to become “creative”.  At my monthly SCI Support Group meeting I quietly await my turn to introduce myself while the other participants describe how they fell out of the top of an 80 foot tree, fell while repelling down Mount Everest, was hit by a speeding 18 wheeler or failed to make the motorcycle leap over 18 buses. When it comes to my turn, I pump up my courage and explain that I was injured when ---- I fell out of bed! Yes, it’s true, but one of these days I plan to come up with a story that’s really worthy of my injury. Anybody got any ideas?

Now my story involves only one of a multitude of different conditions, injuries, illnesses or diseases that confront us.  But even with all these varied types of disabilities and so many individual differences it seems to me that we all share one common question --- Am I disabled or Do I have a disability? 

Personally, I believe everyone has disabilities --- yeah, some are minor and others are pretty serious, but does that make everybody disabled?... Certainly not!  If we agree that we all have some level of disability, then I think we should re-define“disability” as a limitation continuum, not as an absolute “able-bodied” vs. “disabled.” In my reality, I prefer to believe I have a disability.  That perception directs my focus and positive energy on my current “abilities” and what I “can do” as opposed to the “can’t do” associated with disabled.

True, it may only be my perception,but as long as it works --- I think I’ll stick to it.

First, a little introduction. My name is Clint, I’m a husband (one time), father (two times), grandfather (four times) and obedient master (all times) of our dog (a Westie), Daisy. We all live and work in lovely Sarasota, Florida where even the mosquitoes think its paradise.

I spend time on the computer but I really love to garden, landscape and “piddle” around the yard. As to the way I think and tend to write --- I believe that life is a dynamic adventure with the only “constant” being change. To get the most of life, we need to embrace and control this ever evolving experience with an affirmative interpretation and understanding that our “reality” is directly related to our “perception.”

Oh! I almost failed to mention that I also have a disability.  That’s okay since I think it’s important that my disability not define me --- it’s only part of who I am.  A  fall about five years ago crushed my spinal cord. The injury was “incomplete,” but it still qualified me for the dubious description and title of “quadriplegic.”  I’m sure that life-changing event will be the topic of a later post, but not now.

Today, I’d rather share a few experiences about getting this site prepared to publish.  Since this is totally new to me, I have to admit that there were more than a few “challenges.”  I had to consider the technical aspects, domain name, site hosting, site design, site content, target audience, aesthetic design, copywriting, material preparation, downloading and uploading --- all of which were overloading!  But only one simple task embraced me with anxiety and dread. To write, I was going to have to do battle with the KEYBOARD --- with only one useful arm and ONE FINGER to defend myself!  Those of us who have disabilities already know it is life’s daily requirement that we prove we are masters of adaptation. To misquote a well known phrase, “Disabilty is the mother of invention!”  

Now my wife swears that my “one finger” typing is much faster and more accurate than it ever was when I used ten fingers (guess that had increased the mistake probability by ten times). Nevertheless, my goal was to publish this site before the miracles of modern medicine eliminated all disabilities and diminished any need for the site.  So, I have just purchased some speech recognition software that claims it will do everything.  I’m eager to give it a try, but after finishing the tutorial, I’m concerned that the relationship may end up the same as the one I have with my dog Daisy --- where I (not the solftware) am the obedient master!

I’ll let you know soon.