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Wednesday, June 30, 2010

It’s Their Decision

My nose has been close enough to a grizzly’s snout that I could feel the warmth of its breath and smell the salmon it had consumed, but that wasn’t nearly as frightening and an overwhelming sense of helplessness than sending my children out in the world.

Years of foundation construction, years of influence and you give the bicycle a gentle shove as they wrestle with the handle bars over reacting over correcting while gaining independence. It always seemed unfair to me that young adults make the most life determining decisions when they possess the least wisdom experience tutors.

I must boast, I am an extraordinarily fortunate and blessed father in that Hannah and Hunter have heeded the confessions of my many mistakes and have followed my advice. A day is on the horizon when decisions are made that I will struggle to support possibly totally oppose. I dread the occasion, but will have to accept.

Over the years I have been contacted by spouses, sons and daughters seeking information and guidance on how to cope with a decision their loved one has made. I am referring to the monumental decision ALS sufferers make to prolong life with artificial ventilation therapy, a ventilator.

It is the most difficult correspondence because often the husband or wife father or mother has decided not to take life prolonging measures. For me it was not a decision rather a portion of a theme to remain above ground because I had a responsibility to my children. If anyone would like to discuss life on a ventilator please leave a comment or contact me on facebook.

Statistically the individual battling this damn disease is older and as fate would have it the rock of the family, losing them is beyond comprehension. I inadequately attempt to comfort the family member while stressing decisions must be respected. Living as a quadriplegic is the greatest challenge of my life. I totally understand individuals not to extend this lifestyle. I can also sympathize with family members wanting to preserve life. In these nightmare situations never disguise love, provide the assistance and information that is requested and make them confident your support is assured.

If the parent of a young adult fledging the nest or have a loved one contending with a terminal disease decisions must be respected and when possible wishes carried out. Not easy stuff, but imagine the shoe on the other foot. Thanks so much for reading. Have a great day! dj

P.S. I truthfully loved the bear encounter, but if I wasn’t such an oddball it would be a good example don’t you think?

Tuesday, June 29, 2010

Broken Dreams

Has life been a series of detours taking you further away from your desired destination? Everyone is in possession of a story, some tragic others resulting from poor decisions.

If you engage in this game you are destine for many disappointments. They can be jading if you allow them. Actions can become so guarded one experiences nothing, no sadness but no joy. Working without a net is the only way to play.

When dreams cannot be achieved

Tragedy is responsible for many unrealized dreams and unexploited potential. Words fall pathetically short in an attempt to describe how much I loved my life before Lou Gehrig’s disease. The market crash of 87 initiated a maturation that coin wasn’t everything and I need to spend all of my time in passionate pursuits. I contemplated and I could not fathom a better way to satisfy bill collectors than starting an Alaskan fishing guide service. I knew with a certainty never experienced this was my destiny. I committed my heart and discussions began. Eight months later a diagnosis and shattered dreams.

No time to lament. I spent the next ten years fighting to see the next day. The ventilator afforded time for retrospect. Well hell, everything I thought that defined me was gone. Time to reinvent myself? No. It was of the hour to discover the building blocks of my character. The revelation was comforting and disturbing, but presented the opportunity to birth new dreams.

Sometimes dreams aren’t broken just delayed or obstructed

When desiring something fervently seems patience escapes us especially when deciding factors are beyond control. Don’t throw in the towel. Asses your efforts, is it enough?

Poor decisions are often the obstacle impeding the realization of dream. Facing mistakes is the first step and the only way to move forward. Life will continue and wisdom fostered.

Dream boldly and never settle, time is precious. Thanks so much for reading. Have a great day! dj

Monday, June 28, 2010

A Day at a Time

Unfortunately there aren’t refs around to pause the game and call an unsportsman like penalty when life piles on. Sometimes the harder we try the harder it rains. Truly unfair.

The full furry of hell cannot be worse than the decline into paralysis as a result of ALS. Every aspect of your life comes crashing down. Too quickly a cherished life becomes a memory. When learning of the newly diagnosed I become nauseated. Sadness consumes me having traveled the trek ahead of them. It can shake pillars of faith. I often questioned where are you God???

When in the fight and coming up on the short end of the stick it’s damn near impossible to gain proper perspective and maintain optimism. It is extraordinarily easy to condemn the future and any assisting hands with negative thoughts. Life sucks then you die. Been there?

A few undeniable truths I attempt to keep in the forefront of my thoughts when life is getting the best of me: The darkest hour is just before dawn. Nothing last forever and this too shall pass. Most comforting for me is the knowledge there is a solution or resolution for every situation. Problem solving commands the expenditure of effort. When deep into the rounds and getting pummeled calling on depleted reserves seems like an exercise in futility. Have faith in your endurance and capabilities. Discovering your limits then extending boundaries is an exhilarating self-assuring experience.

Time horizons are critical when overcoming tough times. When it really hits the fan suddenly our vision is infinite and certain the issues at hand are unending. Scale way back, come on a little more, that’s it 24 hours. Setting a goal for a day is reasonable more important achievable. Shorten the time span if necessary. Prior to going on the ventilator I had foolishly postponed too long, getting through the night and seeing the sunrise was my goal and prayer.

Tough times mold tough individuals. Maintain the confidence you can accomplish anything you decide and live a day at a time. They will be raising your arm when the bell rings! Thanks so much for reading. Have a great day! dj

Friday, June 25, 2010

Blue Skies

While brief on lyrics Blue Skies by the Allman Brothers is a favorite song on my playlist. A little over a year ago a friend’s Dad passed far too soon. Rex’s father favorite song was Blue Skies and accompanied a slide show depicting a lifetime of loving blue skies.

Walkin by a river that isn’t worrying about where it’s going. Worry consumes precious time while producing nothing productive. As a little guy I decided I would never worry. The decision has been fruitful considering the route this journey has taken. Life happens and with a debilitating disease it seems to exponentially transpire. If I worried even a little about what if I would not have time to address what is. I have endured enough challenges for a couple go arounds and I’m certainly not extending ainvitation, but overcing obstacles s created many life wor living experiences.

You're my blue sky ... you're my sunny day. Lord, you know it makes me high when you turn your love my way. Sharing our days with someone dear makes it all worthwhile. Betrayal callouses the heart. False friends, uninformed critics and small minded people that choose to judge reinforce protective walls. When my wife at the time fought me about going on the ventilator the night before surgery and informed me I was selfish doing so locked my heart away for years.

Our time is much too brief to waste it obsessing over what may be or closing ourselves off to others’ affection. Find your blue sky and enjoy your sunny day! Thanks so much for your time. Have a great day! dj

Thursday, June 24, 2010

Enabled or Enabler?

Regardless of how independent one is the occasion will arise demanding assistance. Once a man twice a child. Accepting help is difficult for many. It seems the individuals needing the lion share rejects a supporting hand outright.

Allowing others to provide aid and ASKING for help has been the most challenging aspect of my seated journey. Humility struggles with stubbornness, modesty and pride for a majority sharing my type A personality. I will never be accused of being modest. Dropping trou has never been an issue. I feel pride for others, but discount that as a reason for avoiding caring offers. Without doubt I am a stubborn cuss. I rather do it myself for a long list of reasons Dr. Phil could analyze for several seasons.

Learning to accept has been a calming healing experience for my soul. It is an ongoing process not a destination. Patience once was something people wished I had is now in my possession most of the time. Typing 10-12 words a minute is a patient example. Well that isn’t entirely truthful. I had to become a quadriplegic to increase my words per minute.

This progression of acceptance has kept my sanity intact, frustration moderated and living with a terminal disease/severe disability possible.

Yes, always needing so much burdens my conscious. When I woke from the tracheostomy tube surgery I felt like a billion bucks. I knew I had been given a second chance to make a difference. Big or small opportunities are present daily to make life a little easier for another. It truly has been my best antidepressant and perspective adjuster when reaching out to those in need.

Find it in your heart to accept assistance when in need, good will be the only byproduct. Take the time to enable a better day for someone with a cloud overhead. The satisfaction is priceless. Enabled or enabler this is the purpose of our visit. Thanks so much for reading. Have a great day! dj

Wednesday, June 23, 2010

Challenge Impossible

Watching TV or perusing print advertising it is clear human beings are not capable of independent achievement. A pill, gadget, supplement, another person, etc. is a prerequisite for accomplishment.

This isn’t infomercial material, but what is possible. The human spirit is indomitable capable of inexplicable feats defying science or reason. Many will quickly explain this away as Devine intervention. My personal belief is we are blessed with free will and gray matter that is in its infancy of exploitation between our ears.

I am a perfectly average guy. Need evidence of my commonality? Check out my transcripts. I share the following to demonstrate anything is possible for any of us.

My first home health nurse was a Nazi enforcing the homebound restriction. I had no idea I was not suppose to leave the house because I felt too poorly to do so prior to going on the ventilator, however, I summand the strength to appear on the local MDA telethon. The appearance was captured in a photograph displayed in my bedroom. I was discharged from Medicare funded home health services because of the chromatic. The Georgia Advocacy Office restored my care, but the experience left an indelible impression on me. No, that’s not accurate, it freaking pissed me off. I was fighting to see a sunrise, I attempted to do something that would benefit others and I get discharged? My thoughts were not G rated.

It was time for me to start living again. Now sustained by the ventilator and emotionally stronger since losing my children in divorce a college buddy and I planned to attend the Georgia Florida game in Jacksonville, Fl. Bill Torpy of the Atlanta Journal and Constitution contacted me to do an article simultaneously. Possessing the knowledge a photograph was enough for discharge a couple million readers would surely be sufficient. Unaware at the time why I picking this fight other I just don’t hide from anyone. I succeeded being discharged. The story was now front page top fold and traveled nationally like a wild fire. I received thousands of emails, two will never escape my memory. Two mothers confined to home by the Medicare homebound restriction experienced the death of child. One mother attended her child’s funeral and was discharged. The other mother’s health required so much assistance and was instructed she would be discharged she did not attend the funeral. Something had to change.

A simple decision set in motion a national grassroots movement that resulted in President Bush signing an executive order relaxing the Medicare homebound restriction. Though I majored in political science my knowledge didn’t extend far beyond the Schoolhouse Rock segment on a bill, I just believed impossible was possible. We all have in our arsenal this capability to change the seemingly immoveable. Challenge impossible. Thanks so much for reading. Have a great day! dj

Tuesday, June 22, 2010

Don’t Forget To Live

It is inevitable some time during this mortal visit you will experience a life altering event. Catastrophe can define the rest of your days or it can be an addition to one’s portfolio moving forward.

Strangers look at me with pity and that is completely understandable. If I could switch places I’m sure I would say that poor bastard too. If forced to assess my daily routine to live of course the conclusion would be it sucked. Obsessing over the price of admission one can never enjoy the show.

For those that are close to me I’m David Jayne that happens to have ALS. A few do not see me as disabled. In a few years I will have lived longer with this monster than pre diagnosis yet I have never had a dream as a disabled individual. Are my dreams kind or am I suffering from denial for two decades plus?

It is a simple decision. I can allow situations to dictate my outcome or I can decide to maintain control of my reactions. While ALS consumes hours of my day and affects nearly every activity it is not who I am. The disease has taken nearly everything I held precious. It has destroyed my family, finances, dreams, but it cannot touch my appreciation for life unless I allow it.

Hell yes it gets difficult, but we all possess the extraordinary power of decision to fold or stay in the game. Challenges and obstacles are guaranteed, it is in your control how you will let them affect your outlook. I would like to think ALS has made me a better person bringing out the best more often than the worst. A very sad reality is the overwhelming majority of my friends battling ALS will fulfill the statistical lifespan of this disease, but within their possession is the power to live every day to the fullest.

You have herculean abilities at your disposal. You may doubt yourself or have not faced a life moment demanding their implementation, only conviction separates you. Define yourself rather than circumstance and don’t forget to live. Thanks so much for reading. Have a great day! dj

Monday, June 21, 2010

Maintaining Perspective

Our lives resemble a sound wave, highs and lows peaks and valleys. Thank goodness it does! Life without ups and downs would be like a rollercoaster track void of hills, more precisely a flat line on an EKG.

I have experienced some phenomenal peaks even a little fame, cameras, TV interviews, People magazine, etc.. Fortunately short lived so my thoughts weren’t polluted to where I would begin to think it didn’t stink. Caregivers keep me grounded daily by turning on the exhaust fan.

When on top soak it in and ride out the wave. Of course it will not be indefinite, nothing last forever including tough times but more on that soon. When riding high please don’t diminish the experience by predicting the conclusion. Enjoy and carry the confidence you will return when exiting the amusement.

The valleys seem to out number the peaks, but that is impossible, maybe we’re not fully appreciating the good times. Hard times certainly have an extended shelf life. They remind me of taking horrible tasting medication as a child, the bottle would never empty.

High or low maintain perspective, particularly when down and out. Typically and I emphasize typically, when you’re enduring a period you wouldn’t wish on your enemy try to remember it is not as bad as it seems. I am in possession of a perfect example. I have a friend who is a Great American. Seth recently returned from Afghanistan. While over there he decided “If I survive this SH@@ I am doing something crazy when I get home.” Well, I have to say he succeeded. It hurts me to type this, he pierced his nipples. As he spun the yarn, he was in disbelief how much the first one hurt and the second was nothing to it.

Stepping back is difficult fighting a fierce fire, but it is necessary to gain a proper perspective. Remain calm, know this will pass and keep it in perspective. Thanks so much for reading. Have a great day! dj

Friday, June 18, 2010

Picking Up The Pieces

Have you ever been physically blindsided? It is eerily similar to when this mortal peregrination cheap shots us. For those inexperienced of the physical persuasion follow me…. For an instant it is surreal because of the shock of being catapulted weightlessly departing terra firma soon to be deposited in a crumpled pile of unrecognizable humanity. Everywhere hurts more than anywhere else. Demanding a significant elapse of time for wits to be gathered the receiving party requires continued recuperation and rehabilitation before reengaging.

Being told I likely would not live to thirty and realizing my dream of fatherhood a few days post diagnosis the life I knew was shattered into a million pieces.

When life delivers such a blow do not waste time and energy as I did attempting to piece together the remnants of the way it use to be. You have seen or may have tried to glue together a cherished piece of broken porcelain. It will always be a reminder of something that once was.

One must take the time to grieve. When my former wife left taking my children from my daily life I laid in bed sobbing for days certain I could not continue nor did I desire to do so. In my despair an epiphany, not moving forward was hypocritical to a lifetime of effort.

When it hits the fan it works this way for me, I get quiet and withdraw taking a pity pause. In time I get pissed, not at anyone or necessarily the situation. I become angry cause life has affected the one thing within my control, how I react. I have been there enough times that I smile when angered emotions arise, because I know I’m on the way up, determination rekindled and things are going to improve.

The times you find yourself in the valley there are opportunities to experience life unknown before. Embrace it then come out of your corner fighting! It is a certainty you will be knocked down again and again on this journey. You do possess the will and determination to rise. To know the character of an individual let them pass by and see how dirty the seat of their pants is. Thanks so much for reading. Have a magnificent weekend! dj

Thursday, June 17, 2010

Your New Normal

Yesterday’s thoughts continued…… Typically life’s encumbrances are brief in duration or do not demand a change in lifestyle. Then there are times when the most unfortunate occurs and life once familiar becomes a memory. A death, a failed relationship, shattered finances, catastrophic injury, failing health, etc. it is a new day.

As I declined into paralysis the brain rattling falls made denial impossible. I was desperately trying to hold onto a life I cherished. Repeating myself I maintained this foolish notion far too long that if I used adaptive aides/equipment I was giving into the disease. So much time and energy was wasted. For those not yet enlightened, if terminally ill or the picture of health every tick of the clock is irrecoverable. Seize the present it is the only promised time.

Longing, missing and wishing for things to return will change nothing and fill a saddened heart with ache. There is a season for everything including grief. Certainly if the power of change is in your possession do not allow hurt, fear or pride to turn an opportunity into a lifetime of regret.

Pain medication for this 19 month old headache is kick’en my memory’s butt. As I digress, I would still include the movie Shawshank Redemption inspires me enormously. I can relate to Andy being in hell by circumstance beyond one’s control, yet refusing hope to be extinguished. “It comes down to a simple choice, get busy living or get busy dying.”

I have a dear friend and upon her plate is a father with advanced ALS, she has symptoms and a young child with Cystic Fibrosis. She tells me she copes by viewing the ever changing environment as her “new normal.” That is my hero!

I cannot couch it better than my friend. Life continues and will drag you along kicking and screaming. Accept and live your new normal to the fullest. Thanks so much for reading. Have a great day! dj

Wednesday, June 16, 2010

Bumps In The Road

What is the image your imagination manifests when asked to depict the ideal life? Fame and fortune? Health? Healthy happy children? A loving marriage? Are you among the fortunate living it?

For the rest of us there are bumps in the road, some it’s the Autobahn with a pebble passing unremarkably underneath the tires, others it is the washboard dirt road from hell and the rest distribute in between.

Youth/inexperience exponentially multiply the magnitude of the pea under the mattress. I recall when everything was a code blue crisis for my children, EVERYTHING! I am chest pounding proud to inform as young adults it’s difficult to get a rise out of Hannah and Hunter they just keep moving forward.

An incontestable fact is life happens. Sometimes it doesn’t warrant attention and others the life altering devastation on an IED. After several physician referrals and a battery of tests I was baffled why the examination room was filled with interns the afternoon the neurologist delivered the results. I was living the dream. I would not have traded places with anyone on earth. I was certain the self diagnosis of a pinched nerve was spot on so why all of interest for a petty problem? Changing mindsets to an abbreviated lifespan was beyond comprehension and unexpected obviously.

What do you do when life turns your world upside down? Even if a horrific self inflicted tragedy there are two choices, give up or reengage. It just goes against every fiber of my being to quit. Even when encountered with impossible odds don’t you want to discover the limits of your abilities then expand them?

The benefit of time is distance increases in the rear view mirror. Using a tired but true cliché, what doesn’t kill you makes you stronger. I will add builds confidence and improves navigation skills for next road hazard.

You possess the capacity to shed the weight of the world and climb back on top. The opportunity remains when life deposits one in uncharted waters. Take the helm and set course time is fleeting. Thanks so much for reading. Have a great day! dj

Tuesday, June 15, 2010

Anything Left?

At the end of the day do you reflect on your accomplishments or do you agonize over the endless To Do list? Worry as defined in the dictionary: to torment oneself with or suffer from disturbing thoughts; fret. How can that ever be a productive use of time? Back to this in a moment.

Trying not to boast, however I have never taken life for granted. Prior to the ALS diagnosis I cannot fathom a guess how many times my Mom informed me I was burning the candle at both ends, occasionally when I was thoroughly exploiting my brief visit she would add for emphasis “and in the middle too!” My Dad said early in this gravity battle that I wasn’t sick I was just worn out because I had lived two lifetimes in ten years. My chest still puffs a bit with that rationale.

While capitalizing on all occasions to enjoy this stopover is a requirement it is not the end all to a fulfilling life. Going all in on every hand is the only way to play this game. Why attempt anything without expending your best effort? And “your” best effort not measured by anything beyond self. A mortal day will arrive for all of us when all desires will remain desires and we will reflect. I do not want that day to arrive with the inflexible realization I left chips one the table.

To live life entirely or as I prefer to say “full throttle” impediments require removal. Anchored in the past by hurt, anger or regret must be cast off. Forgive, forget and get underway. Torturing yourself with worry eliminates forward progress. Once you have exerted your best only Devine intervention can alter outcomes. Why waste precious time when it is beyond control?

Get busy living and ask yourself is there anything left? Thanks so much for reading. I truly appreciate your time. Have a great day! dj

Monday, June 14, 2010

Surprise Yourself!

Can you recall the exhilaration of accomplishment as a child when achieving something you were certain was beyond the realm of possibility or just too chicken to attempt? Savoring the feat was all the sweeter when goaded on by a double dog dare ya bet. Remember?

The innocence of childhood, right? I say wrong! A long time friend of mine posted the following recently as his Facebook status: When I was a child, I spoke as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things. Dante shared this pearl to elicit a rise from his friends because he has a fantastic youthful life perspective. Sadly many wear that statement as a badge of honor. Why? Has tearing pages off a calendar been that jading you no longer belly laugh at the sound of flatulence? A good rip still cracks me up. The beauty of youth, possibilities are void of limiting boundaries. Superman can stop a speeding bullet. I was certain my Dad could do anything.

That childhood belief that anything is possible brought us to the moon, invents medications that saves lives and creates phenomenal technologies that prevented me from being a rotted vegetable. Why did you let go of the most empowering asset you will ever possess? The best news is it’s retrievable.

As a child before I was taught to swim I was playing follow the leader with several older boys at a local lake. We had been in and out of the water on quite a few occasions that didn’t require swimming skills so I thought nothing of it when the leader launched himself from the end of a long block wall extending out into the lake(could be another moral here). I kept waiting for my feet to reach bottom, they never did. I was a little squirt so I was sure no one had ever been this deep under water. I wasn’t familiar with OH SHIT yet, but it was definitely one of those moments. I remember thinking like it was yesterday you have to get to the surface and get to shore. I’m certain Mark Spitz wouldn’t have been impressed with the stroke, but obviously I survived that brush with death. The decision to achieve the seemingly impossible and the sense of accomplishment has never abandoned me.

No, I do not believe thinking limitless positive thoughts is going to cure the ALS ravaging my body, I do know with absolute certainty this attitude has enabled me to overcome challenges beyond the realm of possibility or too chicken to attempt. I know there are people reading today that have allowed others to manipulate and control their lives to the point optimism seems impossible. It is there for the seizing. Seek and allow positive thoughts to permeate your being, it’s contagious, then decide enough! For my friends battling unimaginable physical challenges that have beaten you down emotionally there are solutions most important life exists beyond diagnosis.

Turn back the clock to double dog dare yourself and return to thinking without limits. Experience that enormous sense of achievement again. It is a decision away. Surprise yourself! Thanks so much for reading. Have a great day! dj

Friday, June 11, 2010

Your Defining Moment

Have you experienced an event in life you knew altered the outcome of the rest of your days? Does this epiphany remain on the horizon? The determining episode can be positive or negative. The recognition can transpire instantly or with retrospect. Identification and reflection are essential to assist with future navigation through life’s maze.

I had two events in my teens of the positive flavor. One required the passage of time to fully appreciate the impact and the latter was instant. During the adolescence of my maturation Dad and I bought, sold and restored Model A Fords. We were members of the Model A Restorers Club (MARC). Annually MARC hosted a national meet. In 1976 the chosen city was Anaheim California. In our local club was a member named R.T. McDaniel. Mr. McDaniel was a self made millionaire that appreciated the work ethic I possessed at fifteen.

R.T. was planning to drive a 1931 Model A Roadster Pickup cross country to the national meet with his best friend. Fate would see the friend fall ill a week prior to departure. Unbelievably my name was called from the bench to get in the game. I couldn’t believe he wanted me to go with him and share the driving. I started walking a little taller. The trip was an incredible adventure for a boy that had not traveled west of Louisiana. So much wonderment and anticipation filled my thoughts as we embarked on a humid late June morning. My goals for the trip out was to see a Texas cowboy and couldn’t wait to see California girls. Crossing the Texas state line my neck was in constant motion to spy John Wayne. Just out of Brownsville I spot a horse with a rider. As the distance closed all the imagined garb was coming into focus. As we passed my jaw bounced off the runningboard. My highly anticipated cowboy was African American, a possibility that had never entertained in my young naïve mind. The initiation of my enlightenment.

Anaheim finally appeared on road signs. Just outside the city limits the interstate was being restriped and we crossed wet paint. First stop a carwash to remove the splattered paint from the undercarriage. I stretched my lanky long legs before earning my keep and there she was, the California blonde goddess I had conjured for 2213.7 miles. Mr. McDaniel put his hand on my shoulder and suggested I close at least one eye because she was filling out a crocheted bikini that had much more reveal than crochet.

We celebrated the bicentennial at Knotts Berry Farm with the first girl I ever kissed. Now Donna Strickland will dispute this fact, but you would surely think I would remember such an occurrence? I was treated as a peer by Mr. McDaniel the entire trip so it really wasn’t a surprise when he asked me to drive the 1966 Ford Mustang GT he purchased back to Georgia. He didn’t say ask your parents so I did not give themthe opportunity to object.
Over the two thousand miles I talked my way out of a ticket in Arizona, fortunately the officer wanted to discuss Jimmy Carter’s presidential bid instead of concentrating on my date of birth, avoided a head on collision when a driver crossed the median in Louisiana and I realized a boy left his parents three weeks prior and a man was returning. Looking back I know the confidence Mr. McDaniel had in me and the responsibility placed upon my shoulders morphed into the belief I can accomplish anything I decide to do. Thank you my friend!

The winter quarter of my senior year in high school I met with the guidance counselor to make sure everything was in order for graduation. She inquired what were my plans. I replied I’m going to Georgia. She crisply responded David you’re not university material. She was correct, school rarely could compete with my day dreams. It was however the first time I felt challenged. Growing out of that engagement of wills became my best motivational tools. Tell me I am not capable or it’s impossible and consider it done. Oh yeah, I crammed four years into five and graduated from Georgia.

Wrapping up here, there are individuals that know horrific life altering experiences. Often that leads to years of poor decisions and low or no self-esteem. These defining episodes too can be a springboard to realizing potential. It is a decision you possess the power to make. Thank you very much for reading. Have a great weekend! dj

Thursday, June 10, 2010

Easy Gettin Harder Every Day

How deep is that rut you are stuck in seemingly forever? Have you ever been stuck in a muddy rut on a dirt road? The parallels are amazing. Often times the muddy spot in the road is surrounded by pristine land. Correlation, everyone else has it so good if I could just have the life over there. The sounds and feeling of getting stuck are uniquely unmistakable. The break in traction inevitable induces the depression of the accelerator to the floorboard digging the vehicle deeper and deeper in the muck and mire. Slipping and sliding void of any control then efforts cease to escape. The jostling stops while the helplessness rushes in and depression begins.

Responsibility has a tendency to create monotonous restrictive routines, because children must be cared for, mortgages paid, etc.. Health challenges exhaust and frustrate. Unhealthy emotional environments are superb rut creators.

Dread mounts with the concluding day anticipating the initiation of the next. Sometimes a change in attitude and perspective is what the situation requires. My morning routine consumes 21/2 hours to prepare for the day and be in my chair. For years I longed to return to the days when I was out the door in less than thirty minutes, This was obviously impossible so an attitude adjustment was in order. My only regret now is not being more specific when I wished for two women showering me.

Other times an adjusted perspective is insufficient to break the bondage of a debilitating routine. Deliberate bold steps must be taken to accomplish the resolution. More often than not it is difficult and painful. These changes demand dedication, determination, perseverance and patience.

Solutions exist for every situation occasionally hard to locate or implore more effort than one is willing to exert, but they are there waiting to be implemented. Get out, get muddy and dig out. Thanks so very much for reading. Have a great day! dj

Wednesday, June 9, 2010

What is your wall?

What are your demons? What obstacle (s) impedes your efforts to exploit the potential within? Fear of failure? Lack of confidence? Damaged self-esteem? Responsibilities? Finances? Exhausted? Unsure or unaware of your purpose? Anchored in past by regret or mistakes?

Negative thoughts are extraordinarily debilitating. They distort reality especially perception of self. This deterioration of self worth is typically a result of some small, controlling, manipulative, poor excuse of a human being that must bring everyone down to their subterranean level. Unfortunately this is not a prosecutable crime, because physical abuse does not compare to the lifetime scars of emotional destruction. The punishment should be skinned alive. I was a hunter and adept at caping out hides so line them up. Yes, I have a horse in this race.

If the paragraph above hits home please reach out and seek assistance. You deserve happiness and are most worthy of receiving it. The self image repeatedly presented to you is a manipulation of controlling lies. The world sees who you really are and patiently waiting for you to brilliantly shine.

Some individuals are persuaded into inaction for fear of what people might say or think about them. I believe it has been a blessing that I have never concerned myself with either. However, prior to doing nude muscle man poses atop a chimney at the University of Georgia might have been an ideal time to consider such. At the end of the day if you can look in a mirror with a clear conscious and tight with the Creator what else matters? The vociferous typically are not honest critics in possession of your best interest.

Lack of confidence and fear of failure as an excuse to watch life pass by need to understand and accept learning from mistakes is the best teaching tool available. Trust me I have a doctorate in this area. If the confidence level is not within your comfort zone remember everyone has a long list of firsts. Just dance like no one is looking.

The clock is ticking and opportunities are wasting. As President Regan said, “Mr. Gorbachev tear down this wall.” Thanks so much for reading. Have a great day! dj

Tuesday, June 8, 2010

Dig Out Not Deeper

Have you heard the saying: If find yourself in a hole stop digging? Many of my predicaments are self inflicted or my reactions increase the severity and or duration. Whichever the case when life piles on there is a high probability for self perpetuating negative behavior. When down in a hole, the depths of depression, gaining an accurate perspective is difficult. Challenges, problems, issues, etc. look much larger peering up from the bottom. Overwhelming. The magnitude sometimes induces denial or a procrastination to address the situation.

Fear only acerbates the matter in the mind. The fear of looking under the bed as child became immeasurable with delay, but if courage was summand during the night or the investigation with morning’s light was a relief and disappointing to get so worked up. The correlation is timeless, look under the bed. Life is too precious not to address obstacles and put them behind us. Taking the path of least resistance or appeasing to keep peace are the worst wastes more important steals the opportunity for happiness which everyone deserves and is worthy of receiving.

This journey has provided me with ample occasion to practice digging out of the dumps. During battle I remind myself and try to take to heart this is going to pass, happier days are ahead and I will be a stronger person on the other side.

We have been given the inestimable gift of life. Regardless of challenges or obstacles the value never depreciates. To my dear friends battling ALS I know it is difficult to have hope when the world as you knew it is caving in on you. If I ever get a tattoo it will be ALS SUCKS right across my ass! There can be joy in your life again, there can be joy in anyone’s life. Stop digging. Thanks so much for reading. Have a great day! dj

Monday, June 7, 2010

Patience and Expectations

Are your expectations positive or do you view the future possessing the knowledge life’s commode will flush on you? The latter insures you will never be disappointed, but eliminates mind blowing possibilities. The culture of negative thinking is deeply engrained in modern society. I have several hypotheses why the leading thought is laziness.

Venturing effortlessly through life hoping good things will transpire is not the same as living with positive expectations. Living with positive expectations is a life style that requires a presumptive attitude, proactive disposition, boldness, confidence, perseverance and patience.

Yes, every few months an extraordinarily lucky individual beats phenomenal odds winning a mega lottery jackpot, for the rest of us good fortune doesn’t plop in our laps. My children could repeat in their sleep the following they have heard it repeatedly; anything worthwhile achieving in life requires hard work, determination, perseverance, dedication and patience.

I have lived 22 years with a terminal disease by the grace of God, but our creator placed gray matter between our ears and a free will to decide to exercise the medulla oblongata. I have practiced what I spout from my soapbox today. I entered this adventure expecting to live decades. I have been extremely proactive directing my health care. Doctors are quite human and many don’t have a clue regarding quality of life matters with a severe disability. Educate them and do not take what they say as gospel. Challenge and debate if your expectations are not being met. I search for solutions to obstacles and if they didn’t exist I created them.

Believing good things are going to take place bathes your determination with confidence. Finally, have patience. The best laid plans are often plagued with life’s detours. Instead of losing hope this is the time to double down with determination. Persistence pays big dividends.

We all possess this tremendous power to shape outcomes, but too often we surrender to negativity or unwilling to exert the effort. Take the reins and turn a negative into a positive. You do have the ability! Thanks so much for reading. Have a great day! dj

Friday, June 4, 2010

Make It Count

Do you wonder if your legacy will be memorable? I do hate to be the bearer of bad news, but regardless of your dynamic personality or kind acts the odds are the world will forget you in a few generations. If being remembered buoys your ego and fulfills your self-esteem, I just sunk your battleship. It is defeating to know long before you reach six degrees of separation from Kevin Bacon no one cares about you. So what’s the use? Is the measure of your self worth honestly notoriety? I laugh at moviestars devoting years to become famous then spending the rest of their lives behind sunglasses cursing it.

In the entire scope of things our time is so brief on this sphere it is exponentially insignificant. I repeat, so what’s the use? Given no guarantee of tomorrow seize the moment and endow life with your best effort. For who? For you! At the end of the day when the crowds depart and the lights dim you are confronted with reality. If your life is a façade you can’t deceive yourself, because you cannot con a con. If you’re living to please others in order to receive their recognition you are the only earthly judge and jury that matters. Tear down that house of cards, have confidence in yourself and begin living fully. It is a decision within your control.

Many devote their time to becoming wealthy. Money is wonderful and can change lives, but if the chase is the sole devotion a lifetime is squandered. Others do nothing what so ever except count down to the dirt nap. There is the dreamer who never acts and those that have an excuse at the ready for every situation.

Make a difference! Big or small, make the effort. I am extraordinarily fortunate and blessed in my ALS adventure. I have been blessed with the opportunity to help others. Assisting others has saved me thousands of dollars given to a psychologist, because others’ problems quickly put my issues into perspective. I highly recommend it as an alternative to couch time.

My favorite description of success hangs on my bedroom wall by Ralph Waldo Emerson.

To laugh often and love much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived.

This is to have succeeded.

Make your life count in this manner. Nothing is more rewarding than changing a life for the better. Thanks so much for reading. Have a magnificent weekend! I’ll be back on Monday. dj

Thursday, June 3, 2010

All I Ever Wanted

Many look upon me with pity, but I am living my dream. No, that isn’t a sick attempt at sarcasm. I am honestly living out my greatest dream quite successfully. Still in disbelief?

As a child my dream occupation was not typical of little boys. I did not desire to become a fireman, policeman or soldier. I loved football and Joe Namath, but there was no way in hell I was going to wear Leggs pantyhose. I did wish for a heavy beard so I could shave with Noxzema shaving cream and have beautiful women rub my smooth face. Regret that one, not the beautiful women part. Back on point David. I wanted to be a Dad.

In the same week of being told I had a few years to live my dream came true. My wife at the time discovered the cause of her morning lovefest with the toilet. I have never experienced such a high and devastating despair in the one emotion. I cursed the Lord. Racked with sadness my thought was how could a loving God send a child now? After recovering from the sucker punch delivered by Iron Mike Tyson (the diagnosis) I decided this disease will not abbreviate my life. During the pregnancy I was determined I would not become a brief distant memory, but it was only a desire void of certainty. The long awaited dash to the hospital arrived in the middle of the night. In my excitement I failed to look for on coming traffic and just avoided a wreck at the end of the driveway. Hannah arrived within the hour. As I held our precious gift fresh from the oven I was overwhelmed with a confidence I would see my child become an adult. I have no doubt this was divinely inspired. It was a comfort not known until that phenomenal moment.

I have two incredible children, Hannah and Hunter, 21&20. I am obviously biased, but they are working very hard to realize their dreams while possessing compassionate hearts. I am so proud of them and love my children with all that I am. They make ALS a stroll in the park. It is bittersweet to witness the metamorphosis into adulthood, but enormously gratifying to watch the germination of seeds planted. Not forgetting the immeasurable odds shattered for me to be a part of their lives.

Never give up on your dreams. Ignore the naysayers no matter the decibel of their chorus. I love the word impossible, no other utterance inspires me more. I’m living the dream! Thanks so much for reading. I really appreciate you clicking. Have a great day! dj

Wednesday, June 2, 2010

Lat It Go!

Bull riders say “Lat it go!” to initiate their eight seconds of glory or hell. Now that’s living! Putting it on the line against a ton of adrenaline then hearing the buzzer must be a phenomenal rush. I did a little bull riding of the electronic nature back in the Urban Cowboy era. It didn’t take much to get my long arms and legs going in every direction and be rudely deposited on the mattresses.

If you ride bulls it’s not if you’re going to get hurt its how severe. A veteran rider is in possession of some nasty baggage he must let go of to have a chance at a successful ride. While life isn’t always a bull ride, we definitely must release that white knuckle leather glove grip on past hurts and mistakes to achieve happiness.

Harboring anger and bitterness firmly anchors us in the past eliminating the possibility of fulfilling hopes and dreams. I am certain I am responsible for my onset of ALS. Isn’t that a kick in the pants? I had the good fortune of fly fishing Alaska several times in my twenties before gravity became too much for weakening limbs. The stories of Alaskan mosquitoes are well known and accurate, you’ve heard them, state bird, etc. To combat the onslaught I used a 100% deet gel product and applied liberally. I thought nothing of it until my plastic watch melted from the gel collecting around it. After 22 years the nauseam has not subsided when contemplating what ifs, but I had to let go and forgive myself so I could live fully.

I know there are individuals reading this blog today carrying deep emotional scars. It sickens me to imagine the horrific heartbreaking origin of the pain. I am not telling you I can begin to comprehend; I am saying we all possess the extraordinary power of decision to control our reactions. Joy restored is a decision away. I am a train wreck physically. I cannot speak, eat, move or breathe independently. If someone told me two decades ago I would be in this condition and still seizing the day loving life I would have dismissed them as totally insane. It was a decision. No, it has not been easy and no I’m not always up, but this episode is too brief and much too dang fun not to give it my all. Lat it go! Thanks for reading I truly appreciate your time. Have a great day! dj

Tuesday, June 1, 2010

Change Can Be Empowering

Life is in a constant state of flux, yet many spend a lifetime attempting to establish roots and resisting change. The fear of something negative affecting our existence is powerful.

I am one of the fortunate ones that welcomes change because I bore so easily. EXCEPT! I have a lot new friends battling ALS and this paragraph is for you. My decline into paralysis was just a little slower than average. It is important you have an image of my personality, I was so fiercely independent that I did not drink coffee regularly because I didn’t want to be dependant on anything or anyone. Looks like God intended to teach me a humbling lesson. I promise I have caught on Big Guy! I started having fights with gravity and my face usually displayed evidence of the victor. I had this foolish notion in my melon if I used adaptive aides/equipment/technology I was giving into the disease. I also was dangerously holding onto my former life before this monster interrupted. I was not fearful of change I just did not want to lose possession of my charmed life. In retrospect a miracle is the only answer to explain surviving my absurdity. A physician at a MDA/ALS clinic discussed with me using adaptive aides etc. in an effort to conserve energy thus improving quality of life. She was successful. I quickly realized the adaptive world also restored lost independence, which was extremely important to me. I have since become a technology junkie. I would be SOL without batteries and Velcro.

Every change presents opportunity. Even the worst situations offer the benefit of a learned lesson. When things hit the fan in large quantities during this seated expedition I allow myself a pity pause saying #$%& NOT AGAIN then I get busy addressing the matter at hand. The gift of difficult change is my confidence has grown. Now days adrenaline pumps and I get excited about overcoming another challenge. The worst waste of time during this brief visit is to avoid change. Life is going to happen and we will have ups and downs. Eluding change deprives one of experiences which makes wearing out soles worthwhile.

I cannot fathom the monotony of a static life. Ahead is an adventure. Change can be empowering if you embrace it. Thanks for reading. Have a great day! dj