Friday, May 29, 2009

Response to Youth's Angst

The following is in response to a complaint about older, selfish professionals.

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.

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.

Saturday, May 23, 2009

Disappointments of ALS

Please 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.

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.

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?

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.

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!

Wednesday, May 20, 2009

My Complete Interview for MDA Article on Longevity with ALS

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.

Questions for Long-term ALS Survivor Jeff Lester

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?

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.

2) What advice can you offer to others with ALS, about how you think it's best to live your life? You mention that, early on, you and Lisa decided to live your lives as close to normal as possible. Has that approach worked for you? Why or why not?

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.

3) Your love for Lisa and your three daughters is very evident throughout your writing. Apart from them, do you feel there are other notable quality aspects of your life? If so, what are they?

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.

4) Do you feel that you are still growing as a person? Why or why not, and if why, how?

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.

5) In one of your blog discussions, you ask the question, "Am I making a difference?" Tell us a little bit about you feel you are making a difference, and in what respects.

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.

6) What is the attitude or frame of mind, with which you face the future? That is, are you an optimist, a fatalist, indifferent? Whatever your outlook, why do you think you came to hold that particular position?

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.

7) What parts of your life do you have control over? (That can be physical control, but it can also be control over the choices you make about how you live your life.such as your desire to continue paying household bills online.)

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.

8) Looking back over the years since your diagnosis with ALS.would you do anything differently as far as how you've lived your life? Why?

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.

9) Some people who have lived with ALS for a period of years can be characterized as strong-willed. Would you consider yourself that way? If so, can you give some examples of how, in your life before your ALS diagnosis, that your strong personality made you an achiever, with a desire to excel?

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.

10) You had plans to become an online professor. Is that still a goal, and if so, how close are you to realizing it?

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.

11) Are you considering any other possible expansion of your daily activities?

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.

12) You and your family experienced severe financial downturns when you were no longer able to work, and Lisa had to stay home as caregiver. Now you rely on Medicaid assistance. In one of your blog entries you mention that some PALS "choose death instead of fighting, just to save their family's finances." Did you ever consider that option seriously? Why or why not?

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.

13) In a related area, some PALS, when confronted with the knowledge that they need to go on a vent in order to live, call it quits. Did that thought ever occur seriously to you?

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.

14) Please add any other thoughts you may have about the issue of long-term survival of PALS.

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!

Sunday, May 17, 2009

One Christian's View on Gay Marriage

I 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.

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.

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.

Dedicated to Sandi, Kristin and Kavin as well as any other gay friends I have.

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