Family Tradition

I was asked to write about what family traditions I try to maintain while dealing with a disability. I had to smile and confess the first thought was Friday afternoons in Athens, Georgia at the 5th Quarter, cold beer, peanuts and Hank Williams Jr Family Tradition playing on the jukebox.

As a child my dream occupation was to be a Dad. I had so many plans, ALS and divorce destroyed most of them. Paralysis and losing the ability to speak made connecting with toddlers challenging. Hannah and Hunter were lip readers at a young age, they always understood I love you. Hanging on the scooter and getting dragged on the floor always initiated those wonderful uncontrollable belly laughs. Rides around the block towing a red wagon was an eagerly awaited request for me. After the divorce I wanted Christmases to be special at Dad’s. I began a tradition of putting there gifts in a dozen stacking boxes. At eleven and ten the boxes towered over them. The look on their faces entering the living room made the pain of Christmas Eve alone dissipate. It remains a cherished tradition.

New traditions are on the horizon. While corresponding with an intelligent beautiful compassionate woman regarding her father’s battle with this horrific disease she stole my heart as well as her incredible children. Wonderful things will be taking place, long overdue dreams fulfilled.

What are your traditions? Do you work to sustain them? Never too late to inspire a memory that lasts a lifetime and passes down generations. Thanks so much for reading. Have a great day! dj

Make It Happen

Being totally dependant on others has peaked my appreciation when independent accomplishments occur. Thank goodness for batteries and Velcro. My day begins after six. I cannot wait to get in my wheelchair around nine. It’s my captain’s chair like Kirk’s on the Enterprise. No, I’m not a Trekkie, I just remember as a kid how empowered he was seated in his chair. When buckled in and all the technology booted up I am limited only by my imagination.

Opportunities abound to make things happen. Parents, especially Moms of dependant children put in motion at least a few dozen processes before the coffee pot empties. Most are mundane like instructing to brush teeth or as my sweet aunt would say to my cousin, “John, go worsh your teeth.” Other times when the bus is arriving or already ten minutes late out the door a child reveals a serious problem that has festered all night, we usually resolve it before the tardy bell.

Some individuals become paralyzed to act on anything. When a rookie stock broker I had to dial for dollars building my book. I was peddling insured AAA municipal bonds, very very very conservative, but so many people could not make a decision. Fear of losing hard earned savings was completely understandable, but coming out of the Carter years inflation and taxes was eroding their capital.

Inaction in life generally has the same corrosive effect. My heart aches for those that will not act because of a deteriorated self-esteem from verbal and or physical abuse. Again, I hope the perpetrator’s hell is a deep fryer for their genitals. If you are there please get out and know they are only attempting to drag you down into their cesspool of misery. You deserve better!

Infinite possibilities exist if you decide to seize them. Change a life, change your life. Failure and imperfection is guaranteed, but they make the SWOOSH so much sweeter when you get nothing but net. Be bold, believe in your capabilities and make it happen! Thanks so much for reading. Have a great day! dj

Caution Ahead

Interstates, highways, byways and streets are cluttered with road signs. Some signs are limiting, others directional and the majority alerting of impending danger. Most of the warnings are overstated for the average driver so we turn a blind eye.


Maneuvering day to day we refuse to acknowledge many things which we know to be real or true. Warnings unheeded. Why is that? What motivates our reluctance to accept truths or see the obvious?

Me? I am a fixer upper. I am certain I can solve or resolve situations. Success is typically given a toast if the predicament does not involve altering human behavior, but I am a slow learner. At times I just don’t want to believe reality. Finally, there are occasions I cannot see the forest for the trees.

Much time, energy and heartache can be avoided when one heeds obvious signs. Generally the cautions oppose our desires and we continue digging deeper. Yielding to the first speed bump instead of waiting for head on collision would have saved me enormous emotional capital.

Perspective is vital, correction, proper perspective. Trust the gut when feeling uncomfortable, take a step back and read the writing on the wall. Thanks so much for reading. Have a great day! dj

Here and Now

Over the last week I experienced the gambit of emotional highs and lows. A recurring thought was the importance of here and now.

You are familiar with the tired saying live for today, tomorrow is promised to no one. This was honed to a razor edge during my absence. If problems exist confront and overcome. If reflection of self is a distasteful gaze stop procrastinating and implement the changes within one’s control, shed negative thoughts. If dreams remain in the future seize the opportunity to begin constructing that large kitchen with a fireplace today

Avoidance and I’m going to….. leaves one mired in the past forfeiting the precious chance to live fully.

Capture occurrences to brighten someone’s day. I recently witnessed an individual possessing enormous personal burdens and with nothing to gain made a grocery cashier and two bag boys smile ear to ear. This likely was a temporary interruption of the monotony, but may have been the prescription needed. It is unfathomable what people have and have not encountered during their journey, a simple gesture or kind word can change a life possibly save one.

Do not allow here and now to morph into regret. Extraordinary changes are a decision away. Thanks so much for reading. Have a great day! dj

Discovering Your Destiny

Do you know your purpose for this visit? Individuals that possess exceptional talents never need to ponder such a question. The only extraordinary talent I possessed was having fun. I was pretty good with a fly rod, but never met a professional fly fisherman.

I feel this is an important question to ask and critical to develop an answer. Knowing your purpose sure makes difficult days endurable. The last 22 years I have been on a futile quest for an answer. I do not mind saying my travels to hell and back no longer require MapQuest. I desire to watch my children become adults and attempt to be a positive influence, but divorce and too many reasons has made that tremendously difficult. I have questioned during pity pauses why so much hurt and loss?

Today my destiny was discovered. It is heartbreaking and beautiful. The purpose of my journey became crystal clear. My life void of these experiences would make me incapable of comprehending the gravity of situations at hand and to come also how to compassionately navigate forward. I have been perfectly groomed for the days ahead.

Yes, a big tease. I will share as things fall into place. I will have guests in my home for the next seven days. They need my complete attention. I will return Wednesday morning. I hope you will come back. Thanks so much for reading. Have a great day! dj

A Great Day

Have you ever paused and said, what a great day? We have all cursed days. I remember the first time it dawned on me I was having an exceptional day, it was on High Falls Lake. I was twelve aboard Halfpint, the first fishing boat I bought, a Sears Gamefisher. It cost $225, that was quite a few neighborhood lawns cut at three bucks a yard. After reeling in a small bass that had engulfed a crappie minnow I turned to my Dad and said “This is the best day of my life!”

Great days as I aged continued to be associated with the achievement of goals. After a sleepless night and my head pounding in the hot humid late May morning sun, graduating from Georgia was still a great day. Stepping out of J3 Piper Cub in the wilderness of Alaska was a great day. My first big month as a rookie stock broker was a great day.

The ALS diagnosis birthed a wonderful change in perspective. Initially I was very depressed thinking that the setting of big goals was no longer possible, but in time realized how much life elapsed unappreciated always hell bent shooting beyond the stars.

Don’t think for a minute I have quit super sizing my dreams, just fully appreciating the smell of the flowers along the way. Sorry about the brevity. Still weak from a bout of food poisoning, but woke up hungry this morning and knew it would be an excellent day! Thanks so much for reading. Have a great day! dj

Objects Are Closer Than They Appear

The wheelchair lift on my new van is narrow requiring precise positioning to load. I recently added a small rearview mirror to the chair that assists with backing onto the lift platform. The mirror is convexed. Along with the diminutive size the lift appears feet away then suddenly a collision.

A facsimile of problems I have failed to address in a timely manner. It’s impressive how the subconscious masquerades reality aiding our apprehension to face issues until they blow up in our face. Avoidance only creates mental stress and typically multiplies the severity of a dreaded outcome.

Confronting dilemmas as they arise eliminates damaging mental/physical stress, often reduces destruction, many times the conclusion is far better than what the imagination has manufactured and most important unlocks the shackles holding one from moving forward and living fully.

Forest Park Senior High was a large school consisting of four long corridors that housed tenth, eleventh and twelfth grades. Winter quarter my sophomore year I spent a sleepless night wondering what time my execution would occur, because earlier in the day a rumor reached its destination. Brock Stanton, an upper classman was going to kill me. Brock’s parents must have known he would grow into his name. When you imagine a person named Brock Stanton your mind doesn’t picture a pocket protector using dork does it? Yes, Brock was the typical handsome musclebound jock with a beautiful girlfriend. That beautiful girlfriend just happened to work after school with my Mom She would come up to me in the halls and talk. That exponentially inflated the self-esteem of a lowly tenth grader still learning the ropes, but the consequence was Mr. Stanton thought I was trying to make time with his girl. Two eleventh grade buddies took me to school the day of my termination. During the ride my buddies lamented they would hate to be me. Should have taken the bus. With my stomach in knots before lunch I decide to get this over with and find Brock in the cafeteria. There was an empty seat across from Mr. Olympia. Taking out a highly leveraged loan from the bank of courage I walked down the isle certain to soon meet my maker. Reaching the vacant chair I slammed the tray on the table sending delectable school cuisine flying and yelled LET’S GO BROCK! Maybe the element of surprise working in my favor, but the only result of the encounter was we became friends. Sadly we lost Brock last year.

Summon the courage to face problems, likely it will not be painless, but afford yourself the opportunity to live unshackled. Thanks so much for reading. Have a great day! dj

Communicating Words

I received a phone call this morning straight out of a nightmare. You know a dream when you’re naked in public? Well wait, that never bothered me. OK, a dream of walking into class and it’s the final exam but you forgot to study! Nope, been there done that. Point is the Cobb County Board of Education was on the phone informing my caregiver I was an hour late for a paid appearance. OH SH%$! My mind raced with questions. Did I really miss a speech? The day planner I use is between my ears. Did I have my first nearly senior moment? Reviewing email correspondence my memory was confirmed, I had been given the wrong month August 29th. I was overwhelmed with regret because I had been asked to inspire educators and health professionals that will be working with disabled and special needs children. Communicating words.

There are infinite occasions where accurate communication is critical. My father dedicated over thirty years to air traffic control. Every transmission demanded perfection or lives were lost. That is quite a burdensome responsibility. Words exchanged in the relationship setting also require accuracy, in addition word selection, tone, consideration and intent carry more importance because of their phenomenal power. The utterance of a few words can catapult a life or inflict a lifetime of damage. I’m the type I say what I mean and mean what I say. The neurologist that informed me I would likely not live beyond my twenties was looking down his nose just above his black rimmed reading glasses wearing a crisply starched knee length examination coat as his frank words void of emotion embedded in my memory permanently. In retrospect it was exactly how I would like to be told I was going to die, but a news tease before the commercial break sure would have softened the landing. He was just divulging facts, but lacked consideration of the situation. I recently did the exact calloused thing to someone I care about. I deeply regret my thoughtless delivery but once launched the damaging words orbit eternally. I must and I will improve my communication.

I have been given the extraordinarily wonderful opportunity to love, share, mentor and attempt to undo the damage of abusive words spoken to six beautiful young souls. Truly an honor that will never be exceeded. My reward? Unconditional appreciative love. Life cannot get any better. Don’t ask to trade places with me, the answer is no.

The communication of words has unfathomable ramifications, choose wisely and seize chances to better lives. Thanks so much for reading. Have a great day! dj

Taking Chances

I have a good friend preparing for Army Ranger School. While defending our freedom in Afghanistan Seth was offered this opportunity. Quite an honor that he humbly down plays. He wants to complete his education, but he is postponing his return to college to face this challenge. They are going to kick his ass and keep kicking when he is down. In advance he is aware less than a third of Ranger candidates graduate without repeating sections, recycled, and many wash out completely. Why do it when he could be comfortable and giving me a hard time about Georgia football games? Taking chances is the only way to experience life.

I have thrived on working without a net. The greater the risk the greater the reward, but I loved discovering my limitations then extending boundaries. This held true for every aspect of my life except matters of the heart. When physically able filling days with activities made this denial nearly painless, idleness revealed the cavernous void. Disability curtailed the maddening pace of distraction, but bruising emotional losses reinforced the walls surrounding my heart. After too many precious years forfeited an epiphany, living in a shell did not shelter me from hurt it only retarded my ability to live fully.

Taking chances incorporates the opportunity to fail, it’s guaranteed. Disappointments are a certainty too when climbing out on a limb. The valleys of life foster an appreciative perspective for the times we live for. Retreating only cheats one out of experiences good and bad. Take a chance . Thanks so much for reading. Have a great day! dj

Keep Believing

This will be brief, pain pills decided not to work today. Do you still dream large or has disappointment jaded your hope? Don’t let go of hope despite how grim circumstances appear. Unbelievable happenings can take place just when you are certain their occurrence is impossible.

When hope is allowed to die nothing remains. I do not know if hope is spiritual, but is a life sustaining phenomenon. I have witnessed too many friends with this damn disease die within weeks of relinquishing hope.

Believe me it is not easy to hold onto optimistic beliefs when the hits just keep comin, in the depths of despair seemingly is the time to expect the impossible to occur. A beautiful story is metamorphosing in my life, movie material, I hope to share soon that adds credence to this reality. Hang on and keep believing. Thanks so much for reading. Have a great day! dj

Dum Vita Est Spes Est

It is vitally important for individuals to stop and reflect on which things in life are truly important. We have all heard it said that no man on his last day will say "I wish I had spent more time at work". Taking time to deeply consider these important things is a gift to those who may have lost some or all of their former abilities. Those who keep themselves too busy to stop and reflect, are the ones who are indeed missing out on a great opportunity.

Faced with the most difficult challenges of life, it is comforting to know that we are not alone, others have experienced similar situations, and that we are understood. Many of life's difficulties remind us that we should live each day to the fullest.

The work of Helen Keller reveals to us that her words are quite true when she says that we will not achieve success without suffering. She suggest that struggling in life offers us the chance to see things more clearly, become inspired, and find the true meaning of happiness and success.

Quadriplegia has taught me taking action does not necessarily suggest physical movement. It suggests that we stay involved in our own lives. As long as a brain is healthy and functioning, this means that anyone has the power to continue living a full and productive life. As long as we are living we have the ability to continue taking part in really living. Even those of us who are unable to move or speak should continue living to the fullest.

No one knows on which day their life will come to an end. Anyone of us may face this at any time. How each of us chooses to live, and how this affect others is what truly is important.

Dum vita est spes est - While there is life there is hope. These are words that we must all remember when dealing with the challenges of life. Thanks so much for reading. Have a great day! dj

Numbers

What is the calibration you use to measure your progress in life? The door facing at my grandparents’ house in New Orleans where Paw-Paw precisely scratched a notch above my head and my shoe size were the measurements I gauged progression as a child. I would gawk at the increasingly widening increments in the doorway to the kitchen with disbelief I was ever that small. Putting my socked foot on the cold Brannock Device was always a moment of excited anticipation. A larger pair of PF Flyers was certain to increase my already blazing speed. If you ever wondered what PF was the abbreviation of….. Posture Foundation.

In my late teens I decided I would be a millionaire by thirty. My wise family doctor would question progress with sarcasm. It took a few years into a terminal diagnosis to realize his sarcastic take on my monetary goal was because there was much to life than a bank account balance.

By thirty ALS had ravaged my body, but I was foolishly holding onto an old lifestyle. That is a number I was fortunate to survive.

Next April I will reach the fifty year point on this journey. I am planning on a beach bash weekend. That is an extraordinary milestone considering the odds I am facing. I am incredibly grateful I have witnessed my children become caring responsible adults. I smile when I see gray hair fall on the barber’s cape. I imagine I have some wrinkles, but haven’t seen myself in a mirror for many years. A wrinkled mug would make me smile too. I am grateful for all of these miracles though I’m embarrassed to admit I wonder too often what I could have accomplished without ALS. Talk about looking a gift horse in the mouth.

Obviously I never fathomed this fork in the road. Life sure was simpler when everything was measured on a door facing or Brannock Device, but I prefer my evaluation of progress these days and likely would have a less appreciative perspective without this rocky road. Thanks so much for reading. Have a great day! dj

Til It’s Gone

Sorry about yesterday ALS was being a pain. I have had a severe headache since 12/07. I damaged a few nerves on the left side of my forehead with technology to access the computer. The anesthesiologist is attempting to kill the nerves with phenol injections. Wednesday I had an injection. A side effect is swelling around the eyes. This time the swelling closed my eyes and that started the wheels turning.

Of course the first thought was how horrible it would be to lose my sight and not have the ability to appreciate the beautiful features of loved ones. Even though my son has a pretty good imitation of Jesus Christ going minus the beard I love seeing his towering statue.

My biggest fear and I imagine most ALS sufferers is losing the ability to communicate. I’m down to one finger and a several facial muscles that contract on command without fatigue. I have been at a plateau seemingly for over a decade. Next to the good health of my children I am enormously grateful for this pause in progression. I have said before I cannot fathom anyone more ill suited for this lifestyle than me. I guess knowing I lived life wide open maintains sanity. I would hate reflecting on years of inactivity. I didn’t even sleep much, always figured I could catch up when I’m dead.

Life experience has demonstrated to me nothing lasts forever, difficult times pass and anything good requires nurturing to sustain. I have also leaned how precious every minute is on this journey. Have you seen someone that is capable of squeezing a tube of toothpaste until absolutely nothing remains? Not sure if that’s frugality or OCD, but it sure is a great way to live life, til it’s gone. Thanks so much for reading. Have a great day! dj

Footprints

I really miss wiggling my toes in the wet sand at the surf’s edge. Walking away my feet would leave large deep impressions in the beach soon to fade away. Similar to many individuals that have come in and out of my life. Some creating unforgettable memories while others require prodding of the memory to recall.

During my academic career I would not have been mistaken for the studious type. As a class clown getting a cheap laugh out of the students took little effort, talent and timing was demanded to make a teacher laugh as they instructed me to go to the vice principal’s office. That was a daily goal. I loved school while few subjects rarely inspired my interest several teachers had life altering influences on my future. The first was David Slater. Mr. Slater taught 7th grade history. I had no idea teachers had a sense of humor and could make learning enjoyable. He birthed my passion for history and politics. I was class president my senior year and Joann Phillips was our class advisor. While I was extraordinarily busy having fun she saw things in me I had no clue were in my possession. Mrs. Phillips fostered the belief I can accomplish anything I decide. Finally, dear Miriam Worsham who told me I was not university material. While she was dead solid perfect with her assessment the delivery would have deflated most young spirits, but it was the first time I felt challenged. Yes, a University of Georgia diploma hangs on my bedroom wall, my name is even inscribed on it. A daily reminder the impossible is possible.

A few well placed words or deeds can be miraculous on someone’s present and/or future. More impressive in magnitude are attempts to destroy others’ self-esteem. The longevity is eternal. We remember verbatim the negative assaults. For the males that abuse and manipulate women and children I hope their hell makes the sun feel like a cool dip in a pool. If you have experienced this or living with it presently know and never forget their words are lies attempting to drag you into their cesspool of misery. Pity them and ignore. I repeat, their words are lies!

We leave footprints everywhere, some fade quickly others lasting a lifetime. Take the time and make the effort to improve someone’s day. Thanks so much for reading. Have a great day! dj

No Complaints Here

Do you have acquaintances that never say anything in a positive light? I cannot call them friends because it is exhausting to be around them. I am certain they are so practiced they become oblivious to their verbal regurgitations. I say this because able body individuals have stood beside my chair and let lengthy negative diatribes rip.

Please don’t think just because I’m seated in a wheeled throne no one else can possess problems. There are many walking I would not trade places with regardless of how many figures on the check.

The rants that are disturbing consist of issues one is incapable of altering or most frustrating problems where solutions exist if effort is exerted but they would rather bitch.

In our deteriorating society too many desire for their problems to be resolved by others or without working to achieve a goal. Yes, I could go off politically with few standing when the dust settles, but that would be complaining without action.

No one can comprehend my problems better than me therefore no one is better qualified than I am to seek solutions. There is a resolution for every problem. The solution might not be personally palatable or too much effort required, but that is a decision within your control. OK David, I have terminal cancer what’s the solution sport? Speaking in realities, we are not guaranteed anything at birth, not even a year on parts. We do have the present and it is in everyone’s power to decide how one will live it.

I have learned how precious time is and every tick is gone forever. It is much too valued to waste complaining. No complaints here. Thanks so much for reading. Have a great day! dj

Mistakes and Regrets

I said goodbye to my precious friend Friday morning. It was a struggle not focusing on a lifetime of pain and hardship was mercifully ended. Heather would be very disappointed knowing I entertained that thought. She was the living example of carpe diem. I feel certain in her 29 years she possessed no self inflicted regrets.

She gave it her all every day, she had to in order to function. Dismissing severe pain as the price of admission she lived with a smile. What a phenomenal example.

The last two months were plagued with health issues for Heather. I was unaware because I keep telling myself I was too busy, but no comfort is found. Add that to the list of life long regrets.

Making mistakes is part of humanity. Learning from mistakes is the most effective teaching tool in existence. Admitting and facing mistakes are other shortcomings of being human. Denial anesthetizes reality, but keeps one anchored firmly eliminating development of self more important dream realization.

A stock broker after college I found it amazing how individuals would refuse to sell stocks that were tanking. Hoping their stock would resurrect was a façade, they refused to confront a mistake. Isn’t that the reason we avoid a problem of our creation? Correcting a mistake requires change, change often involves others. That is not easy or painless, but bold moves and bold risks must be taken to make great dreams become realities. What a waste of precious time if our goals are not enormous and we just go through the motions instead. I want to burn out rather than fade away. Thanks Neil.

The clock is ticking. As we age the second hand elapses in seconds. Don’t let your hopes collect dust in the bottom of a drawer due to reluctance. I am in a position that many things are impossible, regret sucks. While there is no such thing as no regret, confront, forgive and get busy living boldly.

Thank you Heather! Thanks so much for reading. Have a great day! dj

Dear friends


My friend Heather’s death has consumed my thoughts, I am emotionally spent. Her mother deserves any strength I can summand and my undivided attention today and tomorrow. I will get back in the saddle and return Monday.

All the best,

David

Seizing Every Moment

I woke to horrible news this morning. My precious friend Heather Rose Brooks died.

A difficult delivery was responsible for the severe Cerebral Palsy. I am overwhelmed with anger reflecting on how much this sweet Angel suffered her entire life.

I have blogged about Heather previously. My life was enriched in the spring of 96 meeting the strongest person I have ever known. I assisted Heather with learning the augmentative communication software I use. She was a quick study.

The only movement that did not throw her tiny distorted body into spastic convulsions was tapping her right toe. This warrior educated herself through high school a tap at time. Our disabilities created similar health challenges. Heather would tap out long detailed emails describing her current health obstacle seeking my advice. The last ten years of her life they were numerous and terrible. She never once complained. One time Heather confided she was scared prior to one of her multiple surgeries. I asked the source of her fear, she was scared her respiratory system was not strong enough and would be ventilator dependant burdening her mother and caregivers even more. A child said this to me. The entire length of our friendship she never experienced a pain free day. Not one day free of severe pain yet she was always genuinely concerned in my well being. Despite the enormous burden a smile rarely escaped her face. Laughter easily erupted.

The greatest honor of my life was escorting Heather to her senior prom. I was asked after her father declined. He was embarrassed. I do hope he has the nerve to appear at the funeral. He will know my opinion of his character. Heather and I danced the night away in our wheelchairs.

Heather taught me you never have to look far to discover someone with a heavier load. I am thoroughly embarrassed that I have ever felt sorry for myself. I had 26 years of experiences she never knew. Even as a quadriplegic my challenges are pathetic in comparison. Heather, from this day to my last I will never pity myself. I will boldly charge ahead seizing every moment as you did my young mentor. I love you, David

A Friend Indeed

Wallace was a quiet boy when we met at W.A. Fountain. This school was the brain fart of the Clayton County board of education. Get the picture, an entire school of hormone enraged seventh graders. Yeah, I agree. This was my public school indoctrination. After six years of knuckle slapping Philadelphia nuns Fountain was the wild wild west.

Discovering Wallace enjoyed the two things I was certain made this world go round at twelve, deer hunting and football I felt good about friending him between the gunfights. In time we would participate in both activities together and add cherished fishing. Hunting and fishing was the culprit our freshman year of college for making a dean’s list.

Wallace blindsided me January 1, 1981 on the turf of the Superdome. Celebrating Georgia’s national championship victory over Notre Dame the upright snapped off the goalpost, the end was feet away from crushing my skull. He saved my life.

During the decline into paralysis he was among the very few friends that crossed the bridge to disability. When still able to fish Wallace would pick me up and put me in my boat.

The last several years I had been blessed with a benefactor that made independent living possible. Sadly the gentleman recently passed away. Wallace picked up the ball and initiated a fundraiser.

It seems I’m always on the receiving end. I can only hope at some point I have been half the friend he continues to be. Do you have you have a Wallace in your life more important are you a friend indeed? Thanks so much for everything buddy! Thanks so much for reading everyone. Have a great day! dj

Facebook status

I will be back tomorro. Have a great day! dj


It is unrealistic to expect life to be fair just because you are good. In this uncertain world we grasp for control as obstacles and challenges impede our travel. The only control we have in life is our decisions. How are you going to react this morning when someone cuts you off on the interstate? Every situation is a life changing opportunity, seize it!




Enthusiasm is often like a 24 hour bug, it doesn’t last long, but it is contagious so spread it.



Looking in a mirror what do see, a success or unrealized dreams?



For too long after my diagnosis I would bargain with God, heal me and I’ll be a Christian motivational speaker. I’m slow but it eventually dawned on me; there are no draws in this game, play the hand you’re dealt or fold. When you accept this suddenly your potential knows no boundaries. I can’t speak, but I give speeches. Believe you can accomplish the impossible then Just Do It! Have a fantastic weekend.



Good morning everyone! This is an exciting morning for me. After years of encouragement by others, recently Doug Bradley and Ann Bertschin I am launching a blog this morning. I am frustrated by the text limitations here. You can read and subscribe at http://davidjayne.blogspot.com/ I will post a link here daily to read updates. Thanks for reading! Have a great day!



More thoughts on “I hope your plan B isn’t more of plan A” An undeniable fact is life happens and often demolishes the best laid plans. Have a plan B more important don’t fight it or be bitter. Salmon fight the current swimming up stream and die. I’m definitely living plan B. I have experienced the greatest joys and accomplishments of my life I would have never known if not for ALS.



Today is a bittersweet. May is ALS awareness month. I have lost count of the number of friends claimed by this horrific disease. I am not an accurate representation of ALS. The reality is someone unable to speak or move, starving and drowning in their saliva. Their longevity is counted in weeks and months not years and decades. Please visit http://www.als-mda.org/ and make a donation if possible. Many thanks, David



A dear friend says, I hope your plan B isn’t more of plan A. I love that statement because it says so much. Often we fear facing our mistakes and continue driving head on into the train or paralyzed and will not act for fear of failing. Believe in yourself and take action. You’re definitely going to make mistakes and fail, but learning and getting back up are the ingredients for success.



Before speaking Friday I reflected on what an exciting time for these graduates. I thought about my graduation, no sleep, black gown and May heat in Sanford Stadium. Back to my point. The excitement of new possibilities exist no matter your age. Life can become routine glazing our eyes and diminishes the flame of hope. Splash your face with optimism and fan that flame. Opportunities await you. Have a great day!



A young photography assistant knocked a boar’s head off my office wall Tuesday and felt horrible about doing so. I attempted to comfort him by saying it was attacking me too when I shot it. He continued to feel bad through out the shoot and it affected his work because he was now too careful. Life happens and acceptance is the only way to move forward and live fully. Have a great day!



I keep an African proverb in mind when the going gets tough: A smooth sea does not make for a skilled sailor. I am obviously a slow learner because I repeat this lesson often, but what doesn’t kill you only makes you stronger. When the storms are raging have confidence in yourself that you will come out on the other side a better person strengthened in character. Have a fantastic day!



Do you find yourself stuck in a rut, searching for the excitement life use to hold or just burned out? I make a conscious decision every morning when I wake, Today WILL BE a great day! No, it doesn’t prevent the crap from flying, but when you start the day optimistically things tend to roll like water off a duck’s back and when good things happen the appreciation is so much sweeter. So have a GREAT day!



With this beautiful weather memories of winter have quickly escaped my thoughts, but I cannot keep from wondering up north do you apply for the job to place THIN ICE signs? On a serious note I know someone that was laid off yesterday. This economy is still losing jobs so if you’re searching for employment don’t lose faith especially in yourself. Difficult times don’t last forever. Have a great weekend!



Be sure to laugh today and often, especially at yourself. If I didn’t make it a daily quest to search for the humor in this paralytic hell I would go insane. Laughter diminishes the magnitude of life’s obstacles and challenges. To be bitter or sarcasm void of humor is such a waste of precious energy.



Just pondering again……. Did Adam and Eve have belly buttons? Do agnostics and atheists insure for acts of God? And finally, can agnostics or atheists be charged with perjury after swearing on a Bible?



We learn from mistakes, right? I should be near perfection by now.



Helicopter pilots live by a philosophy if something isn’t broken it’s about to be and I guess when you swing your wings around at supersonic speeds it is difficult to think differently, but going through life thinking like Eeeyore you cheat yourself out of countless opportunities and experiences. Carpe diem!



Are you avoiding problems or fears in your life? Face them with boldness and confidence. Often our minds manifest much worse scenarios than reality. When real problems and fears exist avoidance makes them exponentially worse. Set yourself free today, turn a negative into a positive. Have a phenomenal day!



You know guys, we always get lambasted for having one track minds, but the truth is we can multitask with the best. Ladies you disagree? You want proof? We read on the toilet. Have a magnificent weekend!



Sometimes we get stuck in a rut when life piles on and we come to expect nothing will improve. That is the perfect time to dream big and make your dreams realities. The burden may be heavy even more than you think you can bear, just shake like a wet dog and have an attitude adjustment. You possess everything to change your life. Have a fantastic day!



What makes life precious for you? What makes you keep going when the tide is against you? What keeps your hope alive? Hope is a fire that must be kept burning by finding a little good in every day, a little good in every situation. I am having a small operation this morning, a last resort to get relief from this headache. I will greatly appreciate your prayers. Have a hope filled day!



If you were struck with amnesia and were told about your life would you be pleased with the revelation?



Do you still possess that childlike belief that anything is possible? I have to believe. Don’t cheat yourself out of grand possibilities becoming extraordinary realities.



Is forgiveness rare for poor personal decisions or worse hold yourself responsible for life changing events where you had no control? Let it go. If you are responsible for a bad decision learn from it and move forward. If someone has damaged your self-esteem trust your heart and know it is not your fault. Life is waiting to be lived



Everyone has a gift or talent. Have you discovered your talent and possessed the courage to develop it? Your life will be enriched as well as the lives of others when talents are exploited.



Live life without regret. Disappointments are assured and love can hurt deeply, but take a chance and risk the emotional capital because regret is forever. Most important, that chance sometimes pays off unexpected phenomenal dividends.



I awake this Christmas Eve morning with a fresh perspective. I can see after 22 very long difficult years all aspects of my life falling into place for the best year ever. I am embarrassed to say my faith had become weak many times, but hope never died. The timing and ease is too remarkable to be anything but Christ’s hand. Merry Christmas!



Are you one of those people that has a conniption fit behind the wheel or are you an observer of said fits? I have experienced both sides of the track and life is so much sweeter when you self medicate on chill pills. They say patience is a virtue, in my case a must. It can be learned. Have a chillin day everyone!



Is life piling on and you're certain you cannot handle another obstacle? When life gets that way for me, like right now, I depend on my faith, I know the darkest hour is just before the dawn and difficult times never last forever. We will get through it, might be just in time for another round but hang in there you'll be magnificently rewarded.



Are you pleased how you are living your life? Notice I didn’t ask are you pleased how life is going? True, we are powerless to the external forces in life, but we maintain absolute control over our reactions. You will always have the power to decide the quality of your day and discover the good in every situation. Have a great day and blessed week!



You know you’re getting old when dinner and a movie becomes dinner or a movie,



Many of my friends are approaching fifty or already there. Lots of folks our age birthday wish is not to be reminded they have a birthday. I have to say my wish is white hair and prune skin )).



I have to laugh as I age when 10 pm rolls around. If I’m out it is definitely time to start heading home when in the past it was time to head out.



Isn’t it amazing the things your parents said to you as a child that you swore you would never say to your children hold so much wisdom now?

The Next Rock

The house I spent my formative years in had a creek flowing through the lot. There was a ten foot ravine surrounding the drainage pipe that went under South Parkwood Drive. That was my wilderness. I could escape and be a million miles from the nearest soul though the illusion would be revealed when one looked up to see the houses built to satisfy the initiation of the baby boom.

All the neighborhood kids referred to ravine section as the deep part. While lacking originality it was appropriately named, because summer thunderstorms turned the lazy stream into a raging torrent which gorged the earth around the pipe. The deep part look like ideal water moccasin habitat and occasionally it was. There was always an excited rush of adrenaline when scrambling down the bank scanning for thick dark sticks that suddenly moved.

Rushing to complete the volumes of nun assigned homework the uniform was stripped and cutoffs donned it was creek time. Countless hours were devoted to slowly lifting rocks. The anticipation grew as the rock’s edge gained altitude. Would it be a crawfish, salamander, mudpuppy or snake? Almost always the expectation was rewarded. A quick grab to examine the prey closely then off to the next rock.

It seems the expectancy became an addiction that molded my character. I have spent my life wondering what is under the next rock. It has made awaiting the next sunrise worthwhile. Regardless of how difficult travel becomes on this journey, how defeated I feel in time wonderment rises out of the despair renewing the ascent to the top.

Keep turning over rocks. Yes, you might find a snake, but incredible possibilities await under the next rock. Thanks so much for reading. Have a great day! dj

That’s Life

There are two songs not found in church hymnals I hope are played at my funeral: Delbert McClinton’s Had A Real Good Time and Frank Sinatra’s That’s Life.

Often I say “life” when things happen beyond my control. I could waste a lot of energy and time getting upset, but why? Youthful inexperience baited me into the trap decades ago, but I had a buddy that really cut a shine when things didn’t play out according to his plan of perfection. His Mom called them fits. He did come by it honestly from his Dad. That was my first experience being embarrassed for an adult. An indelible impression was made and I didn’t take that fork in the road.

“Some people get their kicks, stompin' on a dream.” The world is full of naysayers. I just don’t get their philosophy. I say dream beyond the stars and enthusiastically encourage the hopes of others! Infinite possibilities exist just waiting to be seized by dreamers.

I've been a puppet, a pauper, a pirate,

A poet, a pawn and a king.

I've been up and down and over and out

And I know one thing:

Each time I find myself, flat on my face,

I pick myself up and get back in the race.

Sing it Ole Blue Eyes! I despise the word quit and hate that I have tried. There is too much life to be enjoyed. Disability has curtailed the number of activities only because I do not like burdening others, but some of my grandest accomplishments were checked off the bucketlist when I couldn’t even pick my nose.

If you find yourself up or down over and out stay in the race. Any long distance runners know a race is a journey not a destination. I loved when the “runner’s high” kicked in and all pain vanished then the run could be savored, because that’s life. Thanks so much for reading. Have a great day! dj

Give It A Day

Has life pushed you to the edge? At your wits end? Thinking thoughts out of the norm? Pulling your hair out? Certain you can’t take it any more?

Boy howdy, I know those emotions well. I’ve been to hell and back so many times I no longer need MapQuest. It is such an isolating experience being at the edge armed with the certainty there no are solutions within grasp. Helpless. Helpless. Helpless.

Where is God when it hits the fan? Talking to a priest a decade ago when working through a tough time he told me many of the saints felt abandoned by God. While I’m lightyears from a saint it remained a comfort knowing my feelings were not unique. I have spent most of the last twenty years feeling forgotten by a Devine Creator. There have been instances during the 20+ years believers would say that is the hand of God, but it could have been logically explained away. I’m going to share a story contrary to my soapbox preaching, but in my mind conclusive proof God is with us at all times.

For those that do not know me when I decide to do something it is a done deal, no doubts, no regrets just taking care of business. That applies to suicide as well. Two times during this ALS adventure I exceeded my limit. So how does a quadriplegic kill himself or herself? Sounds like a question that needs a punchline. On my old wheelchair the ventilator was not attached to the chair back and it was possible to recline the chair enough to crush the hose and cut off the air flow. Near my house is a horse park. During the week typically no one frequented the area. The plan was to drive there and take care of business. The first attempt I was nearing the street to leave the subdivision when a neighbor I had never met stopped me to introduce himself. After twenty minutes of conversation it was clear he was not going to leave my side. He with me back to my home. I was pretty certain that was Devine intervention, but time dulls the memory and impressions made. I just couldn’t do this any more for a long list of legitimate reasons beyond exhaustion and depression. Off to the horse park. Nearing the area I encountered my neighbor the street was clear I felt a sense of relief. At the exact location my neighbor thwarted the first attempted my chair suddenly turns 90 degrees and crashes into the curb. The impact knocked my head off the headrest and off the switches I used to drive. Totally helpless I begin laughing uncontrollably. OK God I am certain now was my thought. I felt the weight of the world lifted. I knew I am suppose to be here and no more pity parties.

I do not recommend pushing the Godly envelope rather remember this story. When you reach your limit have confidence in your endurance and know the light of a new day will illuminate things differently. Give it a day. Thanks so much for reading. Have a great day! dj

Getting Back In The Game

You don’t have to tear off many calendar pages before experiencing hurt and disappointment. That is a certainty during our visit on this big blue marble. Much of it originates from decisions one makes sometimes poor in nature, but most often with the best intentions. Other hurtful transgressions are beyond control, the most damaging are the inexplicable acts of others on the innocent. All deteriorate trust.

I am very uncomfortable always referring to myself, but it’s the story I know best. My fiercely independent lifestyle prior to this seated journey did not lend it itself to fostering deep meaningful interpersonal relationships. The truth is when things encroached a little I was making tracks. When Lou knocked the count was in the pitcher’s favor.

This damn disease has taken away nearly everything I held precious. Others made decisions that were more devastating than the illness. Trust? What trust?

My heart felt nothing. It was a survival tool, but such a perfected waste of treasured time. Sadly too many years elapsed in this state. I had lived life fully in my activities, it came a time to experience life completely before regret was not an option. Since deciding to live with an exposed heart hurt and disappointment have not vanished, but I feel life now the good and bad. I say this with all sincerity, I’m sorry it took ALS to reach this destination, but I would not trade lives.

Enough about me. If you’re living in a bubble as a result of life events self inflicted or not shake it off like a wet dog and get busy living. To heal often the medication tastes awful. Forgive yourself, forgive others and get back in the game. Thanks so much for reading. Have a great day! dj

Happy Independence Day!

Wishing everyone a fun and safe holiday! I’ll be back tomorrow. Just a brief rant. Our great nation was birthed by hard working responsible self reliant individuals. That seems like a foreign concept in today’s political climate. Both parties are responsible for their cowardness to address the real issues with common sense solutions. The exponentially widening minority education gap is a rapidly growing cancer I fear is terminal. That is everyone’s problem regardless if you have participated in white flight and falsely protected yourself in suburbia. Without the distraction of fireworks, cookouts, mountain vistas or crashing waves I am quite sad this morning reflecting on where we have traveled. Thanks so much for reading. Have a great day! dj

Roll With The Changes

Those surrounding my age remember REO Speedwagon and their great song Roll With The Changes. The frustrated lover makes an offer that should be impossible to decline, but guys you know women )). His attitude works well for this post.

Before I matured somewhat, last week, testosterone ruled and roll with the changes, go with the flow, don’t make waves were incompatible with my anti passive personality. My hard head was always bruised and battered from constantly beating it against the wall.

Now don’t misinterpret the proceeding paragraph I still love to mix it up, but the testosterone cocktail is cut with a jigger or two of judgment. Most of my hair turns loose before it turns gray, but time is responsible for an amazing metamorphosis of one’s perspective.

There are issues that must be addressed no matter the degree of difficultly or how much pain will be endured/inflicted. When the house cleaning is complete life can be experienced with enormous ease when you allow issues that are insignificant in the big picture to roll off like water on a duck’s back. This is a practice that requires development. When you boil it down the only thing that holds true significance is giving and receiving love. ALS has taught me I can live without anything but love.

Issues are guaranteed to arise and many at first blush will appear gianormous, take a breath then don your duck’s back. I love the movie For Love Of The Game for various inspiring reasons, I especially enjoy when Kevin Costner says, “Trigger the mechanism” to silence the crowd in his mind and get in the zone to pitch. When I near my maximum carry capacity I say, trigger the mechanism. It is mind blowing how much it relaxes me and puts me in the appropriate mindset. Try it you’ll like it.

Roll with the changes so you can let the good times roll! Wishing everyone a happy independence day! I really appreciate your time to read. If you enjoy my nonsense please share the link. Have a fantastic and safe weekend! dj

Lifelines

I thoroughly enjoyed playing Who Wants to Be a Millionaire when Regis Philbin hosted, but thought “lifeline” was over kill as a name especially for simple $100 questions. Of course I’m a multi millionaire from playing. Aren’t you?

I have two physical lifelines, a feeding tube just above my innie belly button and a tracheostomy tube in my throat connected to a ventilator 24/7. They have been the source of my existence for a combined 31 years. They are part of me to the extent they rarely enter conscious thought. That is quite embarrassing to admit because I should have more appreciative celebrations.

Do you have a lifeline? Is it a mantra, support group, a friend, equipment? I recently participated in article discussing ALS and the internet. WOW, is that ever a lifeline for us severely disabled. Several years ago just after the advent of instant messaging a message pops up on my laptop screen from a friend saying her house was on fire. Her mother left something on the stove and went outside. Two states away the internet enabled her rescue. Now that’s a lifeline!

Are lifelines being tossed to you but being refused? Is the refusal motivated by pride, modesty, lack of perspective? Man, grab on you’re sinking! I was literally killing myself early in my diagnosis because I foolishly refused to use adaptive aides/equipment to prevent life threatening falls. A physician tossed me a lifeline in the form of advice. Fortunately common sense overcame foolhardy thinking and she saved my life.

Look around, are there individuals in need? Make the effort the reward is priceless. Something to consider when doing so in certain cases, enable and empower the person not solve the problem yourself. A dear friend recently shared a beautiful story with me. Years ago her daughter wanted to help a classmate that was a victim of bullying. My friend said, toss her a life preserver instead of jumping in and both of you drowning. What a fantastic metaphor! What a great Mom!

There will be a time you need help, accept it. Opportunities will present to assist, toss that life preserver. Grabbing onto a lifeline or tossing it out we are all in this together. Thanks so much for reading. Have a great day! dj

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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