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

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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

The Economic Dominoe Effect

Originally posted on my forum August 27, 2007. Over a year ago the writing was on the wall but even I did not foresee this level of economic hardship.

While our President continues to tout the strength of the economy, the reality down on main street is much different. My family's 13 year, successful small printing business has suddenly seen a major downward slide in it's sales over this year's business cycle to the point that it might have to close it's doors. This will have a devastating effect on both the employees and the three related families of the owners that depend on it including mine. This is another hardship that can destroy my family financially since we were already on the financial edge due to my 14 year disability caused by ALS and the severe governmental restrictions which I outlined in my previous post.

What is the cause of this downfall? The "economy of real people" which is where 95% of the American people reside, but apparently not the President or his cronies, is sprinting toward a recession. Most Americans are being squeezed by high gas prices (while gas corporations make record profits); skyrocketing health care costs; a completely devastated housing market (the largest investment for most Americans); and the final straw out of control food prices which are the result of the high gas prices and the lack of planning or vision by the government for global warming which has resulted in a knee jerk response causing food prices to go nuts. This pocketbook squeezing combined with the war weariness and it's trillion dollar cost which has hastened the collapse of our already crumbling infrastructure, it's easy to understand why consumer confidence and spending are rapidly declining.

The domino effect is becoming very clear and real to my family as we see a thriving family business disappearing before our very eyes. The three families which will be effected are staring into the abyss of despair and financial ruin which includes the possibility of not one but three family homes! I hope and pray that someone can inspire this nation and steer us back on a thoughtful, intelligent and well planned road to recovery!

You can view my original posts at http://www.freepowerboards.com/ragingbear/index.php

Insurance Abuse by the Insurer - A Case of Corporate GREED

Originally posted on my forum September 27, 2007 and serves as a primary reason we must move away from an insurance based healhcare system. Unfortunately my story is neither an unique or isolated incident. It is the rule not the exception.

This past Saturday my family received some devastating financial news that makes my previous post about a PALS family's financial destruction seem like I have Nostradamus like vision. This news in the form of a letter from the insurance company handling my long-term disability income which informed me that after 13 years they had miscalculated my already small $757 benefit and it really should be $239. Now, I am sure you are asking yourself while this is unfortunate for Jeff's family why this is significant and why does this totally expose the insurance industry for what it really is? It is in the reason given for the miscalculation and reduction. The reason they claim they overpaid me is that they didn't reduce my disability income when we had children and my children received their Social Security benefit under my number to help with their care. I want to restate this in clearer terms. Essentially this GREEDY insurance company is saying that if my wife and I were childless there would be no problem with my benefit but since we DARED to have children and the government decided to help disabled parents by providing a modest benefit to help with our children's care they deserve to reduce my benefit by the same amount thus making the children's benefit moot and saving the greedy insurance company money. This is counter-intuitive and against every policy our government has to try to assist families. My family's story is a prime example of what is so incredibly wrong with our insurance industry! As an extra kick in the teeth after they knocked my family down, the insurance company claims despite it being their mistake that I OWE THEM over $65,000 and further that they will withhold the severely reduced benefit until I repay them which will take nearly 30 years if I should be fortunate enough to live that long. The result of this unjust money grab by the insurance company will be that my family will lose our home which we were just able to purchase one year ago despite the financial restraints of my disability. My wife and I have prided ourselves that we have overcome every obstacle my disease has put in our path including helping other families to learn to live with ALS but the insurance company has placed an obstacle in our path to high that we can not overcome it and which threatens to destroy my family. To everyone here, my family and I respectfully ask for any advice you may have for us to overcome this obstacle and save our family home.

Postscript: In March 2008, we did lose our home because along with the theft of the insurance company, the economic meltdown had severely weakened the family's printing business so that Lisa was no longer able to work from home for it. This 50% loss in income not only forced us from our but also to completely leave the area we had lived in for fourteen years to a town two hours away.