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!