Tuesday, November 11, 2008
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!
Sunday, November 9, 2008
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!
Wednesday, November 5, 2008
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
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!
Monday, November 3, 2008
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
Friday, October 31, 2008
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
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.
Monday, October 27, 2008
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 fantastic grandpa he would be
I love you Dad!!!
by Jeff Lester
Monday, October 20, 2008
By Jeffrey Lester - Aug 22nd, 2007 at 4:45 pm EDT
With last week's news out of Kansas City, where an apparently somewhat wealthy husband felt compelled to throw his disabled and dying wife off of their 4th story balcony because of the financial devastation caused by his wife's increasingly debilitating condition. While this was an extreme response and obviously an excuse for a much deeper underlying problem, it highlights a larger issue for families coping with many different debilitating conditions such as the many muscular dystrophies like ALS which I have, Multiple Sclerosis, quadriplegia and Alzheimer's. This is a horrific side effect that most families who have a debilitating condition enter their lives. The system is setup in such a way where families either have to choose between their financial destruction or the destruction of their family unit. This occurs regardless of proper planning (i.e. health insurance and having an effective savings plan) since unless the sick family member has their own private health insurance (a rare occurrence) the family will be forced into the public system where unless you are already poor the system will start sucking your family finances dry. For families facing extended disease processes of six months or more especially for diseases or accidents that lead to a severe disability, our families quickly start seeing all savings and even our homes lost to care for the increasingly disabled family member with the very governmental systems set up to protect us being the most complicit in our financial destruction (the thriftier someone is just means they have more to lose). When faced with this extra and extremely unfair side effect of having an ill family member, they are faced with one of three choices: destroy our family unit and institutionalize the disabled family member; stand by the disabled family member and watch helplessly as our family finances are stolen from us legally; and finally, the ultimate sacrifice by the disabled family member, choosing death over living because of the mounting stress, guilt and even desire we overtly or subtlety feel from other family members over the destruction of the family's financial security. This is a travesty in the most stark terms since at a time when a family needs every bit of strength they can muster to take on this unfortunate situation, they're instead torn apart by this evil financial destruction. In this great of a country, this is not only an unacceptable reality but it is pox on the very soul of this country when billion dollar corporations are given nearly every break they desire yet the families dealing with a devastating condition in our midst are pushed into our society's shadows and financially punished as a horrible bonus instead of being lifted up and supported by a country which purports to be a compassionate nation.
What can we do? Well I am glad you asked and even if you didn't those of us battling these issues will no longer stay in the shadows and start demanding that things change!!! First, this nation has to stand up and recognize not only the great sacrifice of those who lovingly take on the job of caring for those of us who are not capable to care for ourselves thus keeping us out of institutions but also that the caregiver's selfless act saves our country billions each year that would otherwise go to those same institutions. There are two tangible things to recognize the caregiver's incredible sacrifice: pay them the equivalent to what just one nurse's salary would be if those of us who are disabled were institutionalized, the government will still see a more than substantial savings over the alternative and might entice more people to choose to care for their loved ones at home; defer and even forgive caregiver student loans based on time spent doing this unappreciated service which is no different than the current practice of forgiving the student loans of those 100% disabled. Second, stop the most unscrupulous practice of forcing people into governmental programs and then proceed to demand our financial destruction in order for us to receive the basic medical intervention and assistance we so desperately need. This can be easily achieved by exempting income up to certain limits, exempting home values to certain limits and exempting all retirement accounts to protect those families dealing with severely disabling conditions so we can receive the needed assistance without the destruction of their family financially. Finally, show that this country is truly compassionate by coming up with innovative and revolutionary programs to help our families on a more than a basic level but rather to lift us up to live as normal as possible like: true caregiver respite or assistance programs; reform the vocational rehabilitation system which seems to value a disabled person's possible contribution on the most minimal level but instead have them develop the disabled person's skills to tap this fantastic untapped resource; and finally, reform the archaic rules that require an assistance device be "medically necessary" for them to be purchased but instead utilize a "normalization of life" standard because there are many devices that just sustain life on a medical level but there are other devices which are not currently covered which allow us to truly live.
In a society as advanced, wealthy and claims to be compassionate as ours, overcoming these issues should be no problem and further it should be a measuring stick of our society. Even our founders recognized this by including the phrase in the Declaration of Independence, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." All the families of those of us, who are disabled either by disease or accident, ask is that we have the same chance to pursue the unalienable rights that our founders recognized and our fellow citizens have!!!!!
Your friend in the fight,
Jeff Lester (ragingbear); 40, married w/ 3 daughters (all born AFTER diagnosis)
Dx'd 10/93 and on vent since 12/97
You too can have a fulfilling life by learning to LIVE with ALS!!!
Friday, October 17, 2008
My body has become a prison
Unable to move and unable to help myself
My body has abandoned me
Unable to hug my little girls
My body has let me down
I am young and full of life
My body has given up
But my spirit is never giving up
My body has weakened
But my mind has strengthened
My body has crumbled
Life has become more than physical
My body has become soft and weak
I used to play football, hike and speak
My body has become a scrap heap
I have learned that life is more than my body
My body has become a prison
But the important things are not in this prison
Love, family, friends and especially my wife and children