Thoughts on my 43rd Birthday

The 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.

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 if I were lucky 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.

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.

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.

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) Sphere: Related Content

Life is GOOD!

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?

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!

Sphere: Related Content

What is a LIFE worth living

I find the attached article from CNN rather disturbing.

Australian quadriplegic granted right to starve to death

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 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 spiritual 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 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.

Sphere: Related Content

Deciding Your Life's Path

The 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.

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!

Jeff Lester Sphere: Related Content

Response to Youth's Angst

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

http://nycmemories.wordpress.com/2009/05/28/successful-old-people-should-stop-being-selfish-and-retire/

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. Sphere: Related Content

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! Sphere: Related Content

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! Sphere: Related Content