tag:blogger.com,1999:blog-8346719191356836932023-11-15T10:32:51.047-08:00Ragingbear's RantRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-834671919135683693.post-39454737717687611222010-07-09T11:59:00.000-07:002010-07-09T19:59:56.914-07:00The Lord is MY ShepherdThe 23rd Psalm was my Granny B's favorite passage from the Bible even having it hanging prominently in her home on a plaque. Little did I know as I spent time with her in my youth that she was preparing the way for my life's journey with her favorite passage. You see I have been walking in the valley of the shadow of death for nearly 17 years since my diagnosis with Lou Gehrig's Disease. Yet in all this time I have had no fear because as Granny B would say MY Jesus has been and will be with me. My shepherd has guided me along a path that has not been easy, strewn with many obstacles and at times I was totally blind to the path I was taking but His hand has always been there gently pushing me in the right direction. My faith has wavered and even failed but the Lord like a good shepherd never abandoned me and would come to find me when I was lost and tangled and struggling to overcome some obstacle in my way. Even when people have said your journey is too difficult and what you're attempting is impossible He has whispered in my ear, "I love you. I believe in YOU. I will give you a hand if you need it or send you help to get you through." I have and will continue to overcome anything because of the tenacity and strength that my shepherd has given me as well as the knowledge that He is always beside me to protect and assist me if needed. He has also kept His promise to send me angels in the form of people to give me comfort, a hand and most especially love.<br /><br />This brings me to the other thing my shepherd keeps whispering in my ear, "Remember Jeff I have asked my followers to do one thing, to love one another. Remind them of this!" I try to live in love and be a beacon of His message but I am failing in my mission. In the land that is supposed to be that shining beacon on the hill, we are not following that one command to love one another which the Lord is not happy about. We are too busy allowing politics guide our mood and beliefs causing a canyon to form between us and be filled with hatred and disdain. We have become "too busy" texting, seeking material gain or moments of fleeting triumph that we get so wrapped up in our own lives that we don't notice our brothers and sisters writhing in anguish and pain as we step over them. Regardless of your position on health care, we can no longer let it be acceptable for anyone to suffer and lose everything they have including their lives just because they become sick whether it's from incompetence, greed or just plain laziness we are all God's children. If you're against their government program, then you must demand an immediate viable alternative or better yet contribute your time, money and energy to an organization to assure this never happens. Remember: LOVE ONE ANOTHER! When someone is hungry or suffering in poverty or trapped in a world of addiction remember: LOVE ONE ANOTHER! If tragedy strikes from earthquakes to oil spills, these are not punishments from God as some Christian leaders have suggested but rather tests of our faith to see if we have the conviction to help our fellow man until they're whole again because remember: LOVE ONE ANOTHER! Some seem to believe capitalism and free enterprise can cure all of our ills even confusing it with Christian beliefs. For reviving the economy it can help with one caveat which is that it is purely profit driven so it will not solve everything and unless we start realizing to support our neighborhood businesses it will only send profits elsewhere so remember: LOVE ONE ANOTHER! It seems today everyone lives in fear from terrorists to the liberals/conservatives to the economy to each other but why are you living in fear the Lord is with you and remember: LOVE ONE ANOTHER! No matter if someone disagrees with you or even wrongs you, it is time to unite and retake our Christianity from anyone who uses it or uses it against us because what is most important is to remember: LOVE ONE ANOTHER! The Lord is MY shepherd, He is steadfast and He is the reason I have overcome the most incredible odds, the reason I am. Be well and happy! <img src="file:///C:/DOCUME%7E1/Jeff/LOCALS%7E1/Temp/moz-screenshot-4.png" alt="" /><img src="file:///C:/DOCUME%7E1/Jeff/LOCALS%7E1/Temp/moz-screenshot-3.png" alt="" />Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com5tag:blogger.com,1999:blog-834671919135683693.post-5152664700158890832010-07-05T12:55:00.000-07:002010-07-05T15:05:46.025-07:00Summer Memories<span style="color: rgb(0, 0, 0);font-size:100%;" >As I sit here daydreaming this lazy summer day watching the cotton ball clouds float across the pale blue sky my mind drifts to summers past when my body was young and things were simpler. A warm breeze blowing across my face and tousling a thick head of hair which is now increasing bare. The smells and feel of a lake, river or ocean as I float, fish, swim or frolic with friends or family. The sense of sweat running down my face and back as I worked in the melon fields, played ball, climbed mountains, swung a club, rode from motorcycles to horses and mowing the yard in the sticky southeast Missouri summer sun. The smell of chlorine and Coppertone at the pool and the coming of age at the realization of the blessing of bikinis and girls tanning themselves with baby oil and iodine while hoping a well placed splash might compel a more bountiful view. The sounds of Lynyrd Skynyrd, Jim Croce, James Taylor, Chicago, Aerosmith, Cool & the Gang, Bon Jovi, Footloose Soundtrack and so many others coming from a radio, car stereo, boom boxes or sound system creating the soundtrack of a summer’s good times. The smells and tastes of grilling steaks or burgers, catfish fry, fried okra and squash and of course iced sweet tea or a ice cold Bud depending on the occasion. Trips to Daytona Beach, Colorado, San Francisco, San Diego, Chicago and Houston. </span><p style="color: rgb(0, 0, 0);"></p> <p style="color: rgb(0, 0, 0);font-family:georgia;" class="MsoNormal"><span style="font-size:100%;">Among my fondest memories are sitting by the Mississippi River waiting for the ferry while American Pie played while seeing Dad and Mom hold hands and dance with my sister asleep in the backseat of the car and my brother fell in the water trying to catch a piece of driftwood. Some other word associations that only some of you who were around may understand: Benton dances, Current River, The Plantation, The Sports Complex, summer loves, FBLA conventions, Country Club, Jaycee Pool, Sonic/Cardinal Drive-ins, two-a-days, La Jolla, Columbia/Tan-tar-a, Kimos, Kramer, mini-farms and the rodeos. These are the flood of memories as I sit daydreaming on this beautiful day!</span></p>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-16282795891159018092010-02-03T10:47:00.000-08:002010-02-03T11:59:40.707-08:00It's All about LOVE<meta equiv="Content-Type" content="text/html; charset=utf-8"><meta name="ProgId" content="Word.Document"><meta name="Generator" content="Microsoft Word 12"><meta name="Originator" content="Microsoft Word 12"><link style="font-family: times new roman;" rel="File-List" href="file:///C:%5CDOCUME%7E1%5CJeff%5CLOCALS%7E1%5CTemp%5Cmsohtmlclip1%5C01%5Cclip_filelist.xml"><link style="font-family: times new roman;" rel="themeData" href="file:///C:%5CDOCUME%7E1%5CJeff%5CLOCALS%7E1%5CTemp%5Cmsohtmlclip1%5C01%5Cclip_themedata.thmx"><link style="font-family: times new roman;" rel="colorSchemeMapping" 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Section1 {size:8.5in 11.0in; margin:1.0in 1.0in 1.0in 1.0in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]--> <p class="MsoNormal" style="font-family:times new roman;"><span style="font-size:130%;">As I have gone through my life's journey with all the triumphs, some material wealth and achievements as well as the difficulties, loss and pain there has been one lesson in this my human journey that has remained consistent throughout which is the most important thing in life is love. It's the love given and received from family, friends, acquaintances, strangers and yes even enemies that raise us up above the muck and filth that sometimes encompasses our lives and is ultimately what make our lives worth living. Someone much greater than myself declared that the greatest commandment we should have guide our lives is to love your neighbor. Why then do we continuously find ourselves surrounded by a world of tension, strife, hate and the worst kinds of evil where it seems that love was cast away eons ago? I believe it is because even the most loyal followers of greatest man to trod earth have become deaf to his primary teaching. We have all become cold, self-righteous arbitrators of the world as we see it and are blind to other views of it. We sit in judgment of each other preferring to right instead of embracing each others differences and find strength in them. We quibble and fight over the most insignificant and immaterial items and go to war for even less. We apparently prefer the loneliness of division to the warmth found in the unity of love.</span></p> <p class="MsoNormal" style="font-family:times new roman;"><span style="font-size:130%;">As I continue my journey of life, I dedicate myself to one proposition to love and receive love. I reject the loneliness of self-righteousness and embrace the differences of others. I will find the strength and unity that results when we allow ourselves to find common ground, a common purpose for the common good. I will live my life in love and through that love make this world a better place to live. </span></p> <p class="MsoNormal" style="font-family:times new roman;"><span style="font-size:130%;">I do not want to be lonely anymore and want to come out from the cold. This is my pledge, this is my oath and this is my prayer. I love you. </span></p> Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-39223755555694170072009-10-19T13:01:00.000-07:002009-10-19T14:43:36.271-07:00Thoughts on my 43rd BirthdayThe biggest gift I have received from my diagnosis and subsequent physical disability of A.L.S. is to not mourn or regret what I lose or don't have but rather to focus on the things you do. I view each day as both an opportunity to do something good and to find the happiness it will bring even though you sometimes have to look hard for it.<br /><br />It has now been 16 years since that fateful day when I was told that I had possibly 3 more birthdays to celebrate or maybe 5 more at the outside<span style="font-style: italic;"> if I were lucky </span>so the advice I was given was to go plan my funeral "you know make it a party to celebrate the life you had." It was at that moment I heard a faint NO in the midst of the shock and dismay overwhelming me on this horrible point of reckoning in one's life that is dreaded and feared. It took me several months and that NO growing louder in my head to realize what the NO meant. NO I wasn't going to plan my funeral, NO I wasn't going to worry about my death and NO I wasn't going to stop fighting and striving to make a difference. It was in that moment of NO or rejection of conventional thinking when I not only retook my life but I began truly LIVING! Too many people in this world go about their lives complaining, worrying about what they don't have or someone else has and they live in regret of what they have lost or the life they could have had. What they fail to realize is that what they're doing is essentially "planning they're funeral"! This isn't living.<br /><br />Living is waking each day like it's your last. It's finding the good instead of the bad. It's making a difference in the lives of others that you touch even in a small way even with just a smile to brighten their day. It has nothing to do with fear or judgment or hate. The one thing that has troubled me recently is the rise in these things between people just because they have different points of view since it's robbing us of living together in a better life. It has been and will be through our differences that our greatest strength and accomplishments come which can only be achieved through civility and respect. Living is helping others even when they don't know and cannot help themselves. It's appreciation for each day and those whose paths you cross during it. It leads to happiness, fulfillment, achievement and understanding but most of all living is about love. This is why I hope my life serves as a reminder to quit planning your funeral and start living your life again.<br /><br />The things that you have that truly make you rich are not money and possessions since they are temporary and fleeting but rather it is love that endures, the love of family and the love of friends both old and new. This is why I am truly a rich and blessed man.<br /><br />Here's the quote for today: "Is not life more than food, and the body more than clothing? . . . So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." -Matthew 6:25-34 (NRSV)Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com2tag:blogger.com,1999:blog-834671919135683693.post-42358800772904825642009-09-29T15:35:00.000-07:002009-09-29T15:42:28.207-07:00Life is GOOD!<div>Today once again proved to me how fortunate and blessed my life is. Even though today we were dealing with a minor issue that seemed bad it's only temporary but life made clear to me how insignificant the problem was. First, a neighbor asked Lisa if she could get his step-son from the school bus because he and his wife were splitting up and she had left to get a new stripping job since she was fired from another one and he had to go to school. They have two little girls of their own as well. Then Jordan, my youngest, comes home from preschool talking about her friend who will be coming to school tomorrow with no hair because of her chemo-therapy. Why does this have to happen to this little girl? </div><div><br /></div><div>My life dealt me a tough break 16 years ago when I was diagnosed 16 years ago next week with A.L.S. but then again October 8th also marks my 15th year of marriage to Lisa, the most incredible and beautiful woman and who has given me three incredible and beautiful daughters. I have a truly blessed and wonderful life! Sometimes we need a reminder from life that if we're happy, healthy and have the love of family and friends then life is great regardless of little issues we're dealing with at the time. Life is good for me and has been for everyday I have had after that fateful day nearly 16 years ago. Be well and happy!</div><div><br /></div>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-24555955899540130752009-08-14T15:27:00.000-07:002009-08-14T15:46:14.494-07:00What is a LIFE worth living<h3 style="font-weight: normal;" class="UIIntentionalStory_Message">I find the attached article from CNN rather disturbing.<br /></h3><h3 style="font-weight: normal;" class="UIIntentionalStory_Message"></h3><h1><a href="http://www.cnn.com/2009/WORLD/asiapcf/08/14/australia.right.to.die/index.html"><span style="font-size:100%;">Australian quadriplegic granted right to starve to death</span></a></h1><h3 style="font-weight: normal;" class="UIIntentionalStory_Message">As someone in similar circumstances, I have two issues with this and neither has to do with a person's right to die. First, as someone with trach why is this man choosing starvation when just disconnecting from the <span class="text_exposed_hide"></span><span class="text_exposed_show">ventilator is a more humane and immediate choice for achieving one's death. My bigger problem especially in this internet and technology driven world, why are we still emphasizing one aspect of a person's life, the physical, as so important that when that ability is compromised that death is preferred. Life is SO MUCH MORE than our physical abilities because there's the mental, emotional and spir</span><span class="text_exposed_show">itual aspects of a person's life. Even though in this country we sometimes overemphasize the athletic endeavors of some, that's not what we remember in general. It's the impact of a person's mental or spiritual contributions which make a lasting impact on society and if you think about the family and friends that you have lost it is the love, emotional connections that you shared </span>that mean the most not how physical they were. Physical limitations can be increasingly overcome even with the possibility of using robotic arms through the use of brain waves for quadriplegics on the cusp of being an everyday reality. It is time for everyone regardless of a disability or not to re-evaluate what the true value of their life contributions and what makes a life worth living.</h3>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-8485361995492643052009-06-11T15:00:00.000-07:002009-06-11T15:21:47.807-07:00Deciding Your Life's PathThe following is my advice for someone struggling with their diagnosis of ALS but I believe it can be helpful if applied to anyone's life.<br /><br />The progression phase of ALS particularly a rapid one is difficult to cope with because everything is in flux and it always seems like a new challenge confronts you daily which is overwhelming. Hopefully you can get your footing again so to speak and find a new life's purpose given your limitations. I can assure you that the rapid changes do slow down and stabilize because frankly there becomes less for ALS to take away. My next advice will be hard to read but it's the best thing for you to regain control and happiness. I would advise you to take like a week and really confront what you want to do with your life. Do you want to go on a ventilator or not and make a decision for what you truly believe is best for YOU alone. If it is to let the ALS run it's course then you should quit worrying about dying and start going about LIVING the best remainder of your life that you can have. If it's to vent start working on building a new life with goals and aspirations despite the obstacles of ALS. Either decision is absolutely liberating because it removes you from the hell of living in the unknown where you simply waste the opportunity to have a terrific remainder to your life's journey regardless if that is short or longer. The family and friends must respect whatever you decide and if they can't either they or you have to say goodbye and move on separately. This is my best advice for your situation. Be well and happy!<br /><br />Jeff LesterRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-91777548357120429172009-05-29T14:20:00.000-07:002009-05-29T14:34:14.855-07:00Response to Youth's Angst<span style="font-style: italic;">The following is in response to a complaint about older, selfish professionals. </span><br /><br /><a href="http://nycmemories.wordpress.com/2009/05/28/successful-old-people-should-stop-being-selfish-and-retire/">http://nycmemories.wordpress.com/2009/05/28/successful-old-people-should-stop-being-selfish-and-retire/</a><br /><br />Boy youth is wasted on the young. You miss some critical points in proposing your shortsighted view. First and most serious issue for everyone under 50 (I am 42), is the little matter of Social Security and Medicare going bankrupt in about 10 years if the older generation follows your antiquated advices and retires at 65. This is a very real threat to your future earnings potential and if your suggestion is the course taken everyone will be working much more and receiving substantially less for their labor.<br /><br />Now for the central assumption you put forth which is that the young offer new and better ideas for the future. This is pure bunk since outside the military, education and a few remaining unionized industries (ironically all of which have a set retirement age), the successful professionals who you so unceremoniously dismissed as selfish and just taking pay for contributing little have not only EARNED their position but apparently continue to create greater value than their potential replacements have reliably demonstrated since for the most part we have an at will labor market. Even your recession argument is laughable because statistics show that older, male labor have taken the brunt of the downsizing companies have done. Your argument might have some weight if not for the fact that companies are either having to outsource or import the professionals with the necessary skills that fulfill their labor needs. Maybe this economic downturn is exactly what the younger generation needs the slap in the face that you’re entitled to nothing. That you have to earn your success by developing the skills needed in the future to generate more value than their predecessor was able to create. Quit asking for things to be just handed to you.Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-62223770621693669532009-05-23T17:29:00.000-07:002009-05-23T18:02:24.988-07:00Disappointments of ALSPlease forgive this self indulgence of reflection on how ALS has negatively impacted my life because I know some think of me as a source of inspiration and optimism which I generally view my life with a optimistic lens but not today as I sit here chained to my Lazyboy by a body which long ago abandoned me. Tomorrow I know I will be my old self again but this Memorial weekend has me in a reflective mood about what I am missing and the people in my life who have been absent from it or left this world way too soon. <br /><br />Why is there this disease which robs one so completely of physical abilities and any dignity? Why was I cursed into this hell of dependence? I was not supposed to be this way! I loved being independent, finding a different road just to see where it lead and what adventure may await. I wanted to live a life where I contributed to helping others have a better life, finding a way to lessen their burdens not be the one who needed a helping hand, who creates a burden for someone else to carry.<br /><br /><br /> I am supposed to be the ultimate family man but this damned disease has even robbed me of this destiny. I desire to be the husband that comes in the house with a rose in my hand and mischief in my eyes and desire in my heart, to grab my wife from behind and brush her hair out of the way so I can get a little sugar. I just want to show her the love I feel so deeply in my heart and soul but this life sucking disease does not let me even hold her hand. I am supposed to be the dad that carries my girls on my shoulders, comforts them when they are sick or hurt, teach them the things my dad taught me, coach their teams, cheer their victories and be there to support them in defeat and most of all be their protector but instead this cruel disease has them helping me. Why has this happened to me when so many others piss away their lives in pursuit of things or achievements that have no substance and have hollow rewards?<br /><br />I want to be the friend that gives not takes, the guy you can turn to and depend on when your down to give you a hand up and dust you off, to occasionally cut loose with, go to a game or fishing and even just hang out, shooting the shit and telling tales out of school. I definitely don’t want to be pitied or be the one who makes people think or say “Thank God I am not him!” and even though I appreciate deeply and understand my purpose in life may be to inspire others by overcoming the physical disability with a positive outlook I would rather inspire by my deeds.<br /><br />Lord if it’s in my life’s plan to become whole again I do not seek fame and fortune because those are fleeting and I don’t even desire the satisfaction of self achievement because I see what’s truly important in this life. All I would dedicate my life to is making those who are in my life or even cross my path feel happy and most all loved; give help and not be helped; give and not receive because I have received my quota of help for this life! I know it is hard for many to understand for those who have not lost abilities but learn from me it is not the things or money or even self achievement you miss when your stripped bare by something like ALS, it’s the moments in time you share with others and giving of yourself that you miss. Everything else is meaningless! Be well and happy!Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-69143584366182392182009-05-20T12:59:00.000-07:002009-05-20T13:29:15.112-07:00My Complete Interview for MDA Article on Longevity with ALS<span><span style="font-weight: bold;">I want to share with everyone my interview about my unusual longevity with ALS. While the answers are directed at someone coping with ALS, I believe most of my answers apply to anyone seeking a happy and fulfilling life. </span></span><span style="font-style: italic;"><br /><br />Questions for Long-term ALS Survivor Jeff Lester<br /><br />1) Realizing that there is not yet a treatment/cure for ALS, do you think your longevity after having been diagnosed with ALS can be attributed to any particular influence?</span><br /><br />For me it is my Dad because practically my whole life until his death when I was 19, he had 50% or less lung capacity due to what was diagnosed at the end as pulmonary fibrosis. I or anyone who knew him would not have been able to guess that he was dealing with a health issue since he built an extremely successful dental practice, coached his kids and every other normal activity of an active dad, husband and family man. My dad instilled in me the values, drive, attitudes and most of all tenacity to overcome any obstacle in my life to find success, fulfillment and happiness. The most important lesson he and my mom taught me though was to live your life to the fullest and to love completely which allowed me to find true love with my wife, Lisa. Without Lisa I would not be here today. <br /><br /><br /><span style="font-style: italic;">2) What advice can you offer to others with ALS, about how you think it's</span> <span style="font-style: italic;">best to live your life? You mention that, early on, you and Lisa decided to</span> <span style="font-style: italic;">live your lives as close to normal as possible. Has that approach worked</span> <span style="font-style: italic;">for you? Why or why not?</span><br /><br />I believe the most important thing is to truly live and not merely exist because that’s not living. Also regret is a waste of time and energy. The six months after my diagnosis was the most wasted part of my life because I was so wrapped up in regretting what I was losing and being depressed about my perceived future that I wasted some of the precious few moments left of my “normal” physical life. If I can give any advice to those who are newly diagnosed is to cherish what you have and save the regrets for after you have left this life because then you will have plenty of time. <br /><br /><br /><span style="font-style: italic;">3) Your love for Lisa and your three daughters is very evident throughout</span> <span style="font-style: italic;">your writing. Apart from them, do you feel there are other notable quality</span> <span style="font-style: italic;">aspects of your life? If so, what are they?</span><br /><br />My daughters are my heart and they amaze and bring joy to my life every day. They are my quality of life. Besides them and my extended family, I would say the incredible old and new friends and the much deeper appreciation I have for them because of my ALS gives me a pretty great quality of life better than most. Also waking each day with a desire to improve myself and help others is my life’s mission. <br /><br /><br /><span style="font-style: italic;">4) Do you feel that you are still growing as a person? Why or why not, and if why, how?</span><br /><br />I am definitely growing! I try to improve and grow each day. I truly believe, regardless if you are well or sick, that if you allow yourself to stagnate you will wither and die. You have to aggressively seek and work to grow intellectually, emotionally or spiritually on a continuous basis since we can’t physically in the case of someone with ALS. <br /><br /><br /><span style="font-style: italic;">5) In one of your blog discussions, you ask the question, "Am I making a</span> <span style="font-style: italic;">difference?" Tell us a little bit about you feel you are making a </span><span style="font-style: italic;">difference, and in what respects.</span><br /><br />I hope I am having the same positive difference in my daughter’s lives as my parents made an absolutely positive influence in mine. Further I strive to make a difference in a greater sense to the world before I am done. Ultimately if my approach, struggle, attitude etc. helps even one person live a happier and more fulfilling life than I will have fulfilled the purpose of my life.<br /><br /><br /><span style="font-style: italic;">6) What is the attitude or frame of mind, with which you face the future?</span> <span style="font-style: italic;">That is, are you an optimist, a fatalist, indifferent? Whatever your </span><span style="font-style: italic;">outlook, why do you think you came to hold that particular position?</span><br /><br />I am an optimistic person and view my future with optimism. I even feel I will walk even though it has been eleven plus years since I have. In my dreams I still dream of myself as physically whole. I believe in part it is a gift from God, in part it’s how I was raised and the biggest part it’s the choice I make each day and I work at it. <br /><br /><br /><br /><span style="font-style: italic;">7) What parts of your life do you have control over? (That can be physical</span> <span style="font-style: italic;">control, but it can also be control over the choices you make about how you</span> <span style="font-style: italic;">live your life.such as your desire to continue paying household bills</span> <span style="font-style: italic;">online.) </span><br /><br />I control everything about my personal life except a few minor physical things that ALS has taken from me. On most days I don’t even think about my being disabled because I am too busy. I believe just because you lose some of your physical capabilities it does not relieve you of responsibility of decisions regarding your life or contributing to the lives of those you care about in every way possible. Often times the expectations of society is that we become victims of our disability and that we should relinquish control over the direction of our lives. I utterly reject this notion and have issues with those who take advantage of this wrongheaded view of disability. It is unnecessary and just plain wrong to place the responsibility and pressure on someone else which in most cases is our caregivers who have taken on those things we’re physically unable to do. In my case, I have frustrated so many doctors because I have not blindly followed their advice which in every case time has proven my position correct or how many times Lisa has been asked something as if I was not there and capable of making decisions which she tells the person talk to me because it’s his decision. <br /><br /><br /><span style="font-style: italic;">8) Looking back over the years since your diagnosis with ALS.would you do</span> <span style="font-style: italic;">anything differently as far as how you've lived your life? Why?</span><br /><br />Except for the first six months, I would have gone on trache ventilation sooner because it was at that point that ALS became just some faint background noise in my life. We were able to move forward with some stability and create a new normal since it was that period between diagnosis and venting that’s so difficult because of the state of flux created by the near continuous changes created by the ALS.<br /><br /><br /><span style="font-style: italic;">9) Some people who have lived with ALS for a period of years can be</span> <span style="font-style: italic;">characterized as strong-willed. Would you consider yourself that way? If </span><span style="font-style: italic;">so, can you give some examples of how, in your life before your ALS </span><span style="font-style: italic;">diagnosis, that your strong personality made you an achiever, with a desire </span><span style="font-style: italic;">to excel?</span><br /><br />Some might say stubborn as a mule instead of strong-willed in describing me so yes I probably consider myself this way. Before ALS, I was an Eagle scout; hiked 110 miles in the Rockies; achieved many academic, athletic and extracurricular activities honors because of my self-motivation. Even after diagnosis, I got married (a year after); had 3 daughters; started a printing business with my brother and recently becoming a full-time graduate student at the University of Michigan-Dearborn. One of the greatest compliments I have ever received in my life came from Lisa recently when she called me “a freak of nature” in regards to how I view my life and how I deal with the limitations of ALS.<br /><br /><span style="font-style: italic;">10) You had plans to become an online professor. Is that still a goal, and</span> <span style="font-style: italic;">if so, how close are you to realizing it? </span><br /><br />Yes, I am about to complete my second year in pursuit of a M.B.A. and M.S. in Finance and have two years left to go. After achieving this I plan is to spend a year volunteering in Americorps while I start on my pursuit of a PhD. This all could change this summer as I research what organizations are providing guidance and assistance for disabled students and for those seeking employment. There are some good governmental programs and some ancillary assistance available but no organization that I know of dedicated to the education and employment of those who have disabilities. If I find this area lacking, I plan to create an organization to fill this void.<br /><br /><span style="font-style: italic;">11) Are you considering any other possible expansion of your daily</span> <span style="font-style: italic;">activities?</span><br /><br />Well I am fairly busy with my current activities and responsibilities but I am always looking for that next hill to conquer. For instance, I am excited by the recent advances reported in Scientific American and elsewhere about combining robotics and brain chips that may soon allow me to re-takeover some of my physical care and capabilities.<br /><br /><span style="font-style: italic;">12) You and your family experienced severe financial downturns when you were</span> <span style="font-style: italic;">no longer able to work, and Lisa had to stay home as caregiver. Now you rely</span> <span style="font-style: italic;">on Medicaid assistance. In one of your blog entries you mention that some</span> <span style="font-style: italic;">PALS "choose death instead of fighting, just to save their family's</span> <span style="font-style: italic;">finances." Did you ever consider that option seriously? Why or why not? </span><br /><br />No for me I was so young and had no assets to lose when I was diagnosed that this wasn’t an option for me to consider. In this case, it was an advantage to still be poor because it relieved me of the stress and guilt of one more thing to worry about ALS taking from me.<br /><br /><br /><span style="font-style: italic;">13) In a related area, some PALS, when confronted with the knowledge that</span> <span style="font-style: italic;">they need to go on a vent in order to live, call it quits. Did that </span><span style="font-style: italic;">thought ever occur seriously to you?</span><br /><br />Sure that is a struggle for anyone especially since the medical community is so misinformed or projects their own trepidations at the prospect of dependency that a ventilator projects. Even though I have seen some improvement in this area, they still excessively overestimate the costs of life on a ventilator and even worse completely misrepresent what your life will be like. Often times they say you will be confined to a hospital bed, require 24/7 nursing and that your home will become a mini hospital. The reality doesn’t need to be this way. I don’t even have a hospital bed, only go to bed to sleep, have had two daughters since venting and have had a fairly active life. Outside the small, rolling utility cart from Sears that holds my ventilator and Cough Assist, our home looks normal not like a hospital. I am not saying that it’s easy but the limitations can be overcome and you will be able to again have some sense of normalcy if you choose it. <br /><br /><br /><span style="font-style: italic;">14) Please add any other thoughts you may have about the issue of long-term</span> <span style="font-style: italic;">survival of PALS. </span><br /><br />My final thoughts about this are if you think you want to follow my path quit thinking that ALS is a terminal disease but rather a disability or obstacle that you need to overcome. If you are going to go on trache ventilation do it sooner rather than later because you weaken yourself which could create issues to further complicate your health and you are struggling to breathe unnecessarily so just do it so you can move on with life. In my opinion if you are on noninvasive ventilation half the time your awake go ahead and switch. For anyone, I would say view your ALS as a gift. It has freed you of the everyday worry and stress that makes most miss the important things in life. Use your new found time to have fun, make a difference and most of all show those special people in your life how much you love them and what they mean to you. Be well and happy!Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-44816030151070622782009-05-17T18:35:00.000-07:002009-05-18T11:47:19.405-07:00One Christian's View on Gay MarriageI realize the topic of gay marriage has many Christians grabbing for their Bibles and praying long and hard. I have seen many devout Christian leaders try to make compelling moral arguments as to why gay unions cannot be included as legally recognized civil marriage. They are so certain that if this is allowed to occur it's going to destroy the institution of marriage. I do not doubt the sincerity or convictions of their beliefs and I believe the vast majority are honorable in their intentions and mean no harm to anyone who's gay. As a Christian and heterosexual male who will mark 15 years of marriage this year, I have thought long and hard about this debate and have believed it should be stopped at one time but not anymore. My Christian brothers and sisters our opposition to gay marriage as currently formed is without logic and if we continue to pursue this present course we will be no better than the hypocrites who wrongly accused Jesus. Before you stop reading or quickly respond to what I am writing, all I ask is that you read my opinion in its entirety.<br /><br />The basic arguments I have heard against gay marriage are it’s a sin in the Bible therefore morally wrong and can’t be legally allowed, marriage is to promote procreation so it should be reserved for a man and a woman and finally it should be reserved for the highest standard in an attempt to perfect the institution. All of these basic arguments and their various derivations all end up with the same conclusion that if allowed legally it will destroy the institution of marriage and weaken the very foundation of our country. Now for the sake of argument that the basic reasons of sin, procrastination and perfection of marriage are true and reasonable standards the debate should be over right? Wrong not so fast my friends we have some major issues to address. What about the not so little sins of adultery, murder, rape, incest, pedophiles and the biggest point of destruction for marriage divorce or other issues such as people not wanting and taking steps to prevent children, people too old to conceive or even another mortal sin of child abuse. In my view, the problem is if we want a prohibition on gay marriage then logic and our Christian values dictate that we must also insist on and create legal prohibitions of marriage recognition for anyone violating these other standards especially those who are divorced since even the most vocal opponents to gay marriage freely admit that divorce is a much bigger threat and will cause the destruction to the institution of marriage. If procreation is included in our standard, then anyone who is unable to do so should be restricted to civil unions. If we don’t change our position against gay marriage to include these other prohibitions and limitations we are no better than the hypocrites and I contend no different than the bigots who opposed allowing interracial marriage since we will again be picking on a minor issue while ignoring the elephant in the room. This is just this one Christian’s opinion.<br /><br />I realized that my position may not be exactly clear after re-reading what I wrote above so I have added this section. I am in support of allow 65536 gay marriage since whose interpretation of the Bible will we use in setting the standards of who will qualify for a civil marriage? To me this is an impossible civic debate to have and besides to me civil marriage is only a legal technicality and has nothing to do with covenant made between two people in their religious viewpoint. My marriage bonds have nothing to do with the state's recognition of it. <br /><br />Dedicated to Sandi, Kristin and Kavin as well as any other gay friends I have.Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-67422235416321689582009-04-10T19:36:00.000-07:002009-04-10T19:50:25.619-07:00My DadMy dad was my friend<br />He was a coach, teacher and mentor<br />My dad was my supporter<br />He always encouraged me to do my best without pushing<br />My dad was my buddy<br />He took me hunting, fishing and played games <br />My dad was my ally<br />He always defended me against those who would hurt me<br />My dad was my helper<br />He would make sure to be there to assist me when I needed it<br />My dad was a family man<br />He dedicated himself to love and support his family<br />My dad was a dentist<br />He devoted himself to his patients needs always mindful of their pain<br />My dad was a philanthropist<br />He was a generous man who gave without recognition<br />My dad was my pal<br />I miss him and wish he were here to see the great grandpa he would be<br /><br />(I wrote this many years ago)<br /><br />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.Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-8864894640034058492009-03-09T10:34:00.000-07:002009-03-09T12:51:23.071-07:00Finally 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. <span style="font-style:italic;">(Continued below video)</span><br /><br /><div><iframe src="http://www.msnbc.msn.com/id/22425001/vp/29598211#29598211" scrolling="no" width="425" frameborder="0" height="339"></iframe><style type="text/css">.msnbcLinks {font-size:11px; font-family:Arial, Helvetica, sans-serif; color: #999; margin-top: 5px; background: transparent; text-align: center; width: 425px;} .msnbcLinks a {text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px;} .msnbcLinks a:link, .msnbcLinks a:visited {color: #5799db !important;} .msnbcLinks a:hover, .msnbcLinks a:active {color:#CC0000 !important;} </style><p class="msnbcLinks">Visit msnbc.com for <a href="http://www.msnbc.msn.com/">Breaking News</a>, <a href="http://www.msnbc.msn.com/id/3032507">World News</a>, and <a href="http://www.msnbc.msn.com/id/3032072">News about the Economy</a></p></div><br /><br />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. <br /><br />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!!! <br /><br />Jeff LesterRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-72440337774101618422009-01-03T20:15:00.000-08:002009-01-03T20:41:38.721-08:00Outrageous idealsThe 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<br /><br />..............................................................................<br />His objection: <br /><br />I think this is utterly ridiculous<br />The 4th of July is or should be kind of sacred for our country and not used as a poor box request<br />Your organization makes a mockery of people begging for money<br />Your pain is regrettable but get a grip<br />There are people more in need than you<br />Leave our independence day alone<br />Maybe you should pick another day like Christmas or Thanksgiving or possibly New Year's day<br />We get e mails asking for money or housekeeping or babysitting help<br />That is what family is for<br />Rethink this request and take care of your own<br /><br />Mariolive D.Landon<br />Tennessee<br /><br />THIS IS MY RESPONSE: <br /><br />Dear Mr. Landon,<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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!<br /><br />Jeff Lester<br />MissouriRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-79928960018549878952008-11-11T11:26:00.000-08:002008-11-11T12:29:17.424-08:00This is my ChristianityI 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.<br /><br />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: <br /><br /> "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)<br /><br />This is what I am driven to achieve with my life and thus leave a better world for my daughters. Be well and happy! <br /><br />Jeff LesterRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com1tag:blogger.com,1999:blog-834671919135683693.post-87582393890587100542008-11-09T14:48:00.000-08:002008-11-09T17:33:34.774-08:00Am 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. <br /><br />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! <br /><br />Jeff LesterRagingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-24436867766413168732008-11-05T17:53:00.000-08:002008-11-05T17:55:45.269-08:00Please Do not Forget Us!Dear President-Elect Obama, <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.<span style=""> </span>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.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Those of us afflicted did not seek nor do we desire to be wards of the system.<span style=""> </span>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.<span style=""> </span>We only need the chance which you have the power to provide! </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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 <st1:country-region st="on"><st1:place st="on">America</st1:place></st1:country-region> where anything is supposed to be possible, is the position of a governmental agency to squash aspirations, another barrier.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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. </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">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!</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Sincerely,</p> <p class="MsoNormal">Jeff Lester</p> <p class="MsoNormal"><st1:place st="on"><st1:city st="on">Lebanon</st1:city>, <st1:state st="on">Missouri</st1:state></st1:place></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com2tag:blogger.com,1999:blog-834671919135683693.post-50069522064767918382008-11-03T13:43:00.000-08:002008-11-03T14:14:19.398-08:00Family and Love<span style="font-style: italic;">This is a poem that I originally wrote for my grandmother's 80th birthday.<o:p></o:p></span><p></p> <h1 style="line-height: 150%; font-weight: normal;font-family:georgia;"><span style="font-size:100%;"><span style=";font-family:times new roman;font-size:100%;" >Family and love, love and family are really two words that mean the same<br />More important than money, career, possessions or fame<br />Family and love are the most important things in our life<br />I have been lucky to quite a bit of both especially in finding my beautiful wife<br />Family and love mean several different things to me<br />Granny B's chicken n' dumplings and pies made with love and care<br />Working on scouting badges with Mom, without her help I wouldn't have made Eagle Scout<br />Deer hunting with Dad even though we were never a threat to the deer<br />Playing games with Greg even if we usually ended up in a fight<br />Having the opportunity to live with Laura as adults, which allowed us to become much closer<br />Going to Reelfoot Lake with Grandpa Elza, Dad and Greg and catching the limit<br />Sneaking out with Uncle Gayle for a early morning breakfast before everyone else woke up<br />Hearing Uncle Jack say "you want to wrastl'"<br />Hearing Aunt Barb giving out orders at family reunions<br />Playing dominoes with Granny B and Grandpa Fred<br />Getting to play with my nephews when I visited<br />But I really learned about love and family after I reached the low point in my life<br />I quickly reached one of the high points of my life when I met and married my beautiful wife<br />She then gave me the greatest gift of love you can receive my three daughters that I adore<br />I also had family and friends rally around me, giving me their love and prayers in my time of need<br />I have been truly blessed in my life with lots of love, friends and family that is really what life is about<br /></span><br /></span></h1>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-40552275744254329062008-10-31T11:12:00.000-07:002008-10-31T11:24:09.243-07:00The Economic Dominoe Effect<span style="font-style: italic;">Originally posted on my forum <span style="font-weight: bold; color: rgb(255, 0, 0);">August 27, 2007</span>. Over a year ago the writing was on the wall but even I did not foresee this level of economic hardship.</span><br /><br /><span class="genmed"><div id="EchoTopic">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.<br /><br />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.<br /><br />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!<br /><br /><span style="font-weight: bold;"><span style="font-style: italic;">You can view my original posts at </span></span>http://www.freepowerboards.com/ragingbear/index.php<br /></div></span>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-2057375317140186202008-10-31T10:45:00.000-07:002008-10-31T11:10:41.063-07:00Insurance Abuse by the Insurer - A Case of Corporate GREED<span style="font-style: italic;">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. </span><br /><br /><span class="genmed"><div id="EchoTopic">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.<br /><br /><span style="font-weight: bold; font-style: italic;">Postscript</span>: 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.<br /></div></span>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-81680867563819336812008-10-27T16:16:00.000-07:002008-10-27T19:09:18.740-07:00My Dad<span style="font-style: italic;">This was written unfortunately many years ago but I have felt the loss of my dad since his death in April 1986.</span><br /><br /><span style="font-size:130%;">My dad was my friend<br />He was a coach, teacher and mentor<br />My dad was my supporter<br />He always encouraged me to do my best without pushing<br />My dad was my buddy<br />He took me hunting, fishing and played games<br />My dad was my ally<br />He always defended me against those who would hurt me<br />My dad was my helper<br />He would make sure to be there to assist me when I needed it<br />My dad was a family man<br />He dedicated himself to love and support his family<br />My dad was a dentist<br />He devoted himself to his patients needs always mindful of their pain<br />My dad was a philanthropist<br />He was a generous man who gave without recognition<br />My dad was my pal<br />I miss him and wish he were here to see the fantastic grandpa he would be<br />I love you Dad!!!<br /><br />by Jeff Lester<br /></span>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0tag:blogger.com,1999:blog-834671919135683693.post-48144471053041120132008-10-20T13:52:00.000-07:002008-10-20T13:55:13.863-07:00Health Crisis and Financial Destruction - Original Post 8/22/2007<span style="font-weight:bold;">Health Crisis and Financial Destruction</span><br /><span style="font-style:italic;">By Jeffrey Lester - Aug 22nd, 2007 at 4:45 pm EDT</span><br /><br />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.<br /><br />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. <br /><br />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!!!!!<br /><br />Your friend in the fight,<br /><br />Jeff Lester (ragingbear); 40, married w/ 3 daughters (all born AFTER diagnosis)<br /><br />Dx'd 10/93 and on vent since 12/97<br /><br />You too can have a fulfilling life by learning to LIVE with ALS!!!<br /><br />http://www.ragingbearscloset.com/Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com1tag:blogger.com,1999:blog-834671919135683693.post-9815388486999306342008-10-17T17:50:00.000-07:002008-10-17T18:05:59.938-07:00My Prison<w:view></w:view><span style="font-style: italic;">This is a poem I originally wrote about 10 years ago.</span><br /><w:punctuationkerning><w:validateagainstschemas><w:compatibility><w:breakwrappedtables><w:snaptogridincell><p style="font-weight: bold; font-style: italic;" class="MsoNormal"><br /></p><p style="text-align: center; font-weight: bold; font-style: italic;" class="MsoNormal">MY PRISON</p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal"><o:p> </o:p></p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has become a prison </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">Unable to move and unable to help myself </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has abandoned me </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">Unable to hug my little girls</p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has let me down </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">I am young and full of life </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has given up </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">But my spirit is never giving up </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has weakened </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">But my mind has strengthened </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has crumbled</p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">Life has become more than physical </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has become soft and weak </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">I used to play football, hike and speak </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has become a scrap heap</p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">I have learned that life is more than my body<span style=""> </span></p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">My body has become a prison </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">But the important things are not in this prison </p><div style="text-align: center;"> </div><p style="text-align: center;" class="MsoNormal">Love, family, friends and especially my wife and children</p> </w:snaptogridincell></w:breakwrappedtables></w:compatibility></w:validateagainstschemas></w:punctuationkerning>Ragingbearhttp://www.blogger.com/profile/06958227538484439840noreply@blogger.com0