My Dad

My dad was my friend
He was a coach, teacher and mentor
My dad was my supporter
He always encouraged me to do my best without pushing
My dad was my buddy
He took me hunting, fishing and played games
My dad was my ally
He always defended me against those who would hurt me
My dad was my helper
He would make sure to be there to assist me when I needed it
My dad was a family man
He dedicated himself to love and support his family
My dad was a dentist
He devoted himself to his patients needs always mindful of their pain
My dad was a philanthropist
He was a generous man who gave without recognition
My dad was my pal
I miss him and wish he were here to see the great grandpa he would be

(I wrote this many years ago)

I need to add the greatest words I ever heard was "I am proud of you son"! It was 23 years ago today that he died and I hope I am making him proud of the man I have become because his life is my yardstick and I can only pray that I come close to the standards he set for himself.

Finally FANTASTIC News!!!

I am thrilled today to see the end of a dark age of scientific discovery in this country that occurred just as there were some amazing possibilities for real advances in areas of health and human suffering that haven't been seen since the discovery of vaccines and antibiotics. Today's total reversal of not only the ban on embryonic stem cell research which was far more reaching than even those who may have supported it realize but also changing a philosophy of mistrust of science and it's discoveries as somehow being against the world of faith in God and something beyond the bonds of this life. I do not believe that scientific discovery is disproving a faith in God but rather is proof of it. Every amazing discovery to me not only proves the greatness of God who with one breath created such an amazingly beautiful, diverse and complex living world but also brings a discovery of so much more that we do not understand. (Continued below video)

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I believe that this dark age will be viewed in a historical sense the same as other periods of great discovery when people of faith truly held beliefs against medical advances from blood transfusions to open heart surgery to antibiotics which were held out as anti-Christian and even as something inherently evil. I have many friends and family who feel this to be the case about embryonic stem cell research and I have great respect for their beliefs but I do not share their interpretation of the Bible. I even contend the Biblical basis of their argument is thin at best and the primary Bible verse used in opposition to embryonic stem cell research can easily be interpreted differently. As I stated earlier I can understand the basic opposition to federal funding of this controversial research but as I also stated the ban had a much more restrictive consequence. As with many arguments made against this research, the opposition frequently stated that the ban did not prevent privately funded research which was disingenuous at best. The reality has been that the ban prevented all research since the research facilities had to totally separate the privately funded lab research from any federally funded research. This eliminated nearly all universities from doing research and most companies since they received some level of funding making the ban a virtual total ban on the research. This encroaches on my right as a supporter of the research and imposes a minority belief on the majorities belief. This is a dangerous precedent which would grind our country to a halt. I feel those of you who believe this research and any resulting treatment is wrong have every right to not receive the treatment and you should withhold your financial support from any organization which does support it but in the United States you do not have a right to impose your beliefs on me which are counter to my beliefs.

As I sit here as a disabled person who's a quadriplegic on a ventilator due to the effects of ALS, I have more hope today by this reversed. I realize I may not live to see the reversal of my condition but today was a major hurdle eliminated for the possible reality that I may one day walk, dance and hug the friends and family who I love by shedding the physical bondage and enslavement of my disability. Long ago I shed any chains on my mind and spirit to find a wonderfully fulfilling life but today the hope I feel liberates me a little more. It is through hope and faith that ANYTHING becomes possible and then a reality because to me nothing is more powerful than having them in your life. I am living proof of their power with the hurdles these two words have helped me overcome in my life which is why I know all of us together can overcome the difficulties we have had thrust on us recently with the economic crisis if we just have HOPE AND FAITH that better days are on the horizon of our lives!!!

Jeff Lester

Outrageous ideals

The following was written in objection to a petition recognizing ALS on July 4th the anniversary of Lou Gehrig's famous speech. My response follows. I am sharing this not to drum up support for the petition or ALS for that matter but to highlight the need for us as a country and individuals to examine what our ideals truly mean. You can view the petition at http://www.petitiononline.com/122296/petition.html

..............................................................................
His objection:

I think this is utterly ridiculous
The 4th of July is or should be kind of sacred for our country and not used as a poor box request
Your organization makes a mockery of people begging for money
Your pain is regrettable but get a grip
There are people more in need than you
Leave our independence day alone
Maybe you should pick another day like Christmas or Thanksgiving or possibly New Year's day
We get e mails asking for money or housekeeping or babysitting help
That is what family is for
Rethink this request and take care of your own

Mariolive D.Landon
Tennessee

THIS IS MY RESPONSE:

Dear Mr. Landon,

I read your objection to a recognition of ALS on July 4th with awe at the enormous ignorance that you displayed about what ALS is or even no reading of the petition apparently since you seem to not realize that July 4th was only chosen because it's the anniversary of Lou Gehrig's famous speech. He died from his ALS less than 2 years later. While I understand an objection based on a patriotic argument (I don't see how recognizing ALS would diminish the holiday but I would prefer a different date only to have more of a spotlight on ALS) but I do not understand the vile language you use to defend your position. Certainly from different perspectives there are others who are equally in difficult circumstances but for you to say "Your organization makes a mockery of people begging for money. Your pain is regrettable but get a grip. There are people more in need than you." and "We get e mails asking for money or housekeeping or babysitting help." are so ignorant that you're either a deliberately cruel person or one not the dumbest people I have had the misfortune to come across.

I have had ALS for over 15 years now and over 11 of those years on trach ventilation. Exactly who would you say are so much worse off than those with ALS? It strikes individuals without warning and because of no inappropriate action of the person (like smoking, drinking, over eating etc.) often taking an agonizing six months to a year to be diagnosed. It strikes as young as teenagers to the old. Once the condition starts it begins a relentless assault on the persons physical body with death occurring in less than a year for some with 50% dead within 3 years of diagnosis to 90%+ dead within 5 years. Death however is not the worst of this disease and for many is a wonderful relief from their agonizing journey with ALS. Some of the highlights of my journey: unexpectedly falling with my face stopping the fall because I was unable to blunt the fall with my arms since they were weak which occurred many times including in the middle of a mall; becoming weak to where I couldn't feed myself or hold a cup so primarily my wife had to start feeding me like an infant; having my pants fall to my ankles in the middle of the freezer section of the grocery store which I was unable to bend over to pull them up having to call my wife who happened to be in another aisle; at first needing assistance to bathe or get on/off the toilet to becoming totally dependent on my wife to put me on a bedpan and wipe my ass when I am done; seeing my ability to speak go from someone who gave speeches before 5000 people to someone sounding like when they're at the dentist to someone who can't be understood but by only a handful of family members as I drool all over myself; having a itch you can not scratch or a bug biting you as you try to get someone's attention to kill it; going from someone who enjoyed an active life to becoming a quadriplegic on a ventilator who has been unable to even hug my daughters for 11+ years; getting to watch other fathers coach their kids or carry their kids on their shoulders or dance with their daughters at a wedding as all I can do is watch from my confinement in a wheelchair. Yes you're right we are so much better off than most.

Even though most have taken every responsible step they could have in regards to having insurance, savings etc. the financial devastation inflicted on us and our families is as bad as the physical devastation. I was dropped from my health insurance within six months of my being unable to work and forced into the Medicare system. This causes an unbelievable strain on the family as I can not work and since my wife became my primary caregiver she can not work. This lead to bankruptcy like most face with long-term diseases and the loss of our home as we are forced into the Medicaid system. But yeah you're right we are so unreasonable to seek some recognition and help.

The most infuriating part of your assumption is that in some way our families have to step up more, how dare you in ANY WAY imply this!!! My wife, who like most ALS caregivers, has given so much of herself in dedication to my care that she's put her health on the line. She has in an extremely conservative estimate saved the system well in excess of a million dollars. What is her thanks for this dedication? A student loan that has gone from $20,000 to over $70,000 because she has not been able to work. Further because of jerks who think like you especially under the Bush administration, the extremely limited assistance to give her some relief has been taken away and they ask her to do more and more. I know it is ridiculous we have to come begging for crumbs (1/one millionth of what the government has given just to AIG or the Iraqi's) because my wife and other's like her should be turning down an over abundance of assistance and there should be adequate medical research (I am not even talking about the same amount that the government has spent building a stadium for a billionaire owner and millionaire players called the Tennessee Titans). Please sir may we have some more gruel.

Take your false patriotism, sanctimonious attitude and ideals that say no help for those who need it because family should do it attitude (yet everyday you walk by a starving family in need who are your family) and crawl back under the rock from which you came. We have seen where your type of ideals have lead this country and we reject them for what they truly mean, stepping over your brother as he lay bleeding to death under your feet! No more!

Jeff Lester
Missouri

This is my Christianity

I recently wrote of my displeasure with certain positions taken by my fellow Christians. I realized today that I had not stated what my core beliefs as a Christian and as a fellow human being in this journey we call life are. In looking at my oldest daughter's Facebook page realizing that she has a strong Christian faith that she freely expresses in both words and deeds. This made me extremely proud of the beautiful, thoughtful young woman she is becoming so I must be doing something correct as her dad. It also made me realize that even though my faith has brought me through some extremely difficult and trying times while overcoming some mountainous barriers placed in my life, I have not freely expressed this even to my children. This is my belief which also tells me that I MUST NOT judge anyone else nor to force my beliefs on anyone since I am by far not a perfect person.

This is only the beginning of my conversation of my beliefs as a Christian. I believe as a Christian I have one guiding principle "To love your neighbor as thy self" and further "To love each other" which is the greatest commandments above ANY other. Yes, I recognize what other Christians say that Jesus is my Lord and Savior and I believe this is the way to heaven but Jesus taught us as Christians that this is a choice we make as individuals not to be forced on others through government dictate or other type of pressure or force. He stated it better than I ever could with the following Biblical lesson:

"We know that we have passed from death to life because we love one another. Whoever does not love abides in death. All who hate a brother or sister are murderers, and you know that murderers do not have eternal life abiding in them. We know love by this, that he laid down his life for us--and we ought to lay down our lives for one another. How does God's love abide in anyone who has the world's goods and sees a brother or sister in need and yet refuses help? Little children, let us love, not in word or speech, but in truth and action. And by this we will know that we are from the truth and will reassure our hearts before him." -1 John 3:14-19 (NRSV)

This is what I am driven to achieve with my life and thus leave a better world for my daughters. Be well and happy!

Jeff Lester

Am I Making a Difference?

I often wonder, "Am I making a difference?" This is not a question of self worth but rather one I believe is missing in society today. Often it seems that as a society we are more worried about money, celebrity, appearance, being entertained, proclaiming our faith or lack of it etc. that we have forgotten to ask ourselves a fundamental question. I don't pretend that I haven't fallen prey to the aforementioned trappings so I am not casting aspersions on anyone who does but the recent economic hardships, political campaigns and some items I have seen and read makes me wonder about the priorities and mindsets we have as a society. We will drive our kids all across the country to participate in sports yet educationally our children as a whole are falling behind. We are ready to shell out money for the latest trends or a $5 cup of coffee yet become indignant at helping out our brothers and sisters who are in difficult circumstances. We allow mouthpieces on both sides of a political issues spew the most divisive, offensive trash without consequence yet we forget that on 99% of an issue we agree. People have actually become and exclaim fear because of these commentators who play to the lowest and most profane parts of our human nature. The most troubling recent development for me as a Christian is reading statements or characterizations of the Christian faith such as “Conservative Christians”, “put on your Christian armor” or the worst of all actually questioning someone else’s expression of Christian faith. I do not claim to be either a Bible scholar or have any more insight on Christianity than anyone else but for me being a Christian comes with no other label than that. Neither does the teachings of Jesus have anything to do with armor since he freely associated with the most undesirable of society. If our Christian FAITH is so weak that we must put on armor to protect us from any other viewpoints shouldn’t we question our own strength of faith? Finally, how any Christian can cast conclusions about another person’s life especially their Christianity is against everything I believe as a Christian. He who is without sin can cast the first stone.

I often feel like Don Quixote since I am unsure if I really make a difference with my life or am I just fighting an imaginary good fight. I guess this is a self doubt we all have and must battle everyday but I will continue to wake each day and try this fight the good fight, improve in the roles I have as a friend, son, brother, husband and father and most of all try even in the small ways make a difference to IMPROVE our world. There are three extremely important reasons why I have and will continue to do this despite the barriers in my life Kelsey, Emily and Jordan. I am determined to leave a better world, a better more peaceful existence for my daughters!

Jeff Lester

Please Do not Forget Us!

Dear President-Elect Obama,

I am writing you as a supporter, both in promoting your candidacy with words and financially, and as a member of a small, silent minority in this country the severely disabled from disease or injury which has made us wheelchair bound, dependent on others, sometimes ventilator dependent and confined to our homes or facilities. I recognize during this time of transition you have many critical and defining issues to plan for and deal with but; please do not leave this long forgotten minority that knows no bounds of race, religion, creed, age, sexuality etc., out of the change we so much desire.

Those of us afflicted did not seek nor do we desire to be wards of the system. We merely pray for assistance to achieve as normal a life as possible, that the government not add to our burden and that those who choose to help care for our needs that they not be punished for making this choice of ultimate love but rather receive as much support as possible. Those of us who are disabled mainly have one wish to have meaningful lives in which we contribute to the greater good of society. You will find no group with a bigger desire to answer your call of service to country and with today’s technology, there’s no reason we can’t do it. We only need the chance which you have the power to provide!

I do not presume to fully represent all those coping with severe disability nor do I believe my circumstances are any where close to the most difficult stories of others with severe physical disabilities. However, I will use my now 15 year journey with ALS, Lou Gehrig’s Disease, to outline some of the essential needs or barriers we face that have been long ignored. The most fundamental of these is the fact that we are treated as living ghosts in our society. This primarily is a result of society’s singular focus on physical attributes. There can be no starker example of this than when I was diagnosed as a single man at age 27 and told to go home and plan my funeral because my life was over. As now a married, father of three daughters at age 42 I rejected this thinking which is why I am currently a graduate student in the University of Michigan-Dearborn’s online program. The problem here is the archaic rules of Social Security and Medicare which keep us dependent on and virtual prisoners of these systems. This is a near insurmountable mountain keeping us from working and a more normal life which we desire. A second and related point is we just want a CHANCE to prove what we’re capable of contributing to society. When I was seeking assistance from Vocational Rehabilitation (the agency setup to assist those who are disabled to get back to work) to further my educational goals and professional goals to become a professor, I was actually told “your goals are too lofty, but we will help you become a bookkeeper . . . We do not believe you can achieve your goals.” Really in America where anything is supposed to be possible, is the position of a governmental agency to squash aspirations, another barrier.

In your campaign, when speaking of health care issues you alluded to the reality that many bankruptcies are the result of medical issues. Within the disability community, we account for most of those bankruptcies due to a perfect storm of government rules whose programs we’re forced into and insurance companies who hurl as many barriers at us as possible until they can find any excuse to eliminate their obligations to us. I can write pages on this issue, but I will focus on a situation that occurred me just last year. My long-term disability benefits were suddenly halted after 13 years because they decided they had overpaid me because they had not subtracted my daughter’s Social Security benefits meant to assist with their care. Had I chosen to have no children my disability payments would have been unaffected. Their position is to dollar for dollar reduce their obligation essentially taking Social Security benefits meant to assist disabled parents care for their children. This unjust loophole secretly utilized by insurance companies to shirk their obligations must be closed immediately.

Finally, the most significant point is the lack of recognition and even punishment of loving caregivers everywhere Even though caregivers at the very least are keeping us at home and saving the government the excessively high cost of nursing home care, they receive little if any compensation or even physical relief. Even worse they are often financially punished for their amazing choice to stand by us. In my wife’s case, she has seen a student loan grow from around $20,000 to over $70,000 because she has been unable to work on account of caring for me. She can’t even get rid of or reduce this debt if she goes through bankruptcy. This albatross of debt around her neck is outrageous especially when you consider that she has conservatively saved the system over a million dollars in nursing home costs.

Those of us dealing with severe disabilities don’t want a hand out but just a hand shedding the barriers to as normal a life as possible. We hope to be a part of the movement of change that you are leading to do our part to make this a better country. Please don’t lose sight of our nearly silent minority and allow us change our destiny along with that of our country. Be well and happy!

Sincerely,

Jeff Lester

Lebanon, Missouri

Family and Love

This is a poem that I originally wrote for my grandmother's 80th birthday.

Family and love, love and family are really two words that mean the same
More important than money, career, possessions or fame
Family and love are the most important things in our life
I have been lucky to quite a bit of both especially in finding my beautiful wife
Family and love mean several different things to me
Granny B's chicken n' dumplings and pies made with love and care
Working on scouting badges with Mom, without her help I wouldn't have made Eagle Scout
Deer hunting with Dad even though we were never a threat to the deer
Playing games with Greg even if we usually ended up in a fight
Having the opportunity to live with Laura as adults, which allowed us to become much closer
Going to Reelfoot Lake with Grandpa Elza, Dad and Greg and catching the limit
Sneaking out with Uncle Gayle for a early morning breakfast before everyone else woke up
Hearing Uncle Jack say "you want to wrastl'"
Hearing Aunt Barb giving out orders at family reunions
Playing dominoes with Granny B and Grandpa Fred
Getting to play with my nephews when I visited
But I really learned about love and family after I reached the low point in my life
I quickly reached one of the high points of my life when I met and married my beautiful wife
She then gave me the greatest gift of love you can receive my three daughters that I adore
I also had family and friends rally around me, giving me their love and prayers in my time of need
I have been truly blessed in my life with lots of love, friends and family that is really what life is about