The impact of ALS on someone who has ALS can be most succinctly defined by one simple word: FRUSTRATION.
Frustration at the life you’re losing and over the life you expected to live. Frustration at not being able to do things for yourself and at the dependence you have on others when you physically want something done. Frustration at gaining knowledge about what is truly important in life, knowing you will never be able to fully act on these realizations, and regret over the parts of your life where you wasted time on what you now know were trivial matters.
Frustration at the failure of family or friends who seemingly abandon you when you need them the most, and at yourself when you feel you are failing the ones you love. Frustration at people around you, or even society as a whole, when you see them wasting their time, energy and lives for nonsensical reasons — and especially when they are destroying their health because you know how important your health was, and that you lost it for no apparent action that you took.
Even sometimes frustration with God, or the universe depending on your religious or lack-thereof points of view, because why does it seem so many good people have this damned disease when so many unsavory people seem to go through life with barely a pimple?
And yes, utter frustration at the unlimited systematic failures people with ALS face, from the lack of awareness of ALS even within the medical community (which can endanger our lives); to the lack of governmental and insurance assistance that oftentimes creates unnecessary obstacles and severe consequences; to the ultimate frustration of the lack of progress toward real treatments or a possible cure for ALS, which robs us of an essential factor in our continuing war against ALS: hope.
All this frustration can eat at those of us who have ALS, and it will quickly destroy us if we let it consume us in anger, bitterness and envy against everyone else we perceive as having better lives than us — which can easily become everyone we know except others with ALS that we may have contact with.
I wish I could write that after nearly 20 years with ALS I have virtually eliminated the frustrations mentioned above, or at least most of them, but that would be among the biggest whoppers I have told in my life.
At best, after all my time with ALS, I can better cope and manage my frustrations.
In some of the cases mentioned, I have calloused myself by lowering my expectations or even anticipating a negative outcome when dealing with certain situations, like when dealing with governmental or financial entities. In other cases, I have taken these frustrations head on by challenging any limitations someone else puts on me and, more importantly, any limitations I have put on myself in my own mind.
Any of a thousand little things that most people don’t even think about — like scratching, swatting a bug away or talking with a friend — can be like a thousand paper cuts to a person with ALS. But if you have some angels in your life, like I do, it can take a lot of the sting away.
Some frustrations are the kind you never know where or when they will hit you. They sucker punch you, taking your breath away, hurting you to your core, your heart and soul. This happens to me when one of my daughters hurts themselves and I cannot comfort them, or when my wife has to do something that I would be doing as the man of the house like fixing a loose screw on a chair, or any of the things I expect of myself as a son, brother, nephew, uncle, friend, and most especially, as a husband and father.
In my experience and what I hear from others with ALS, it’s not what we cannot do for ourselves, but it's what we cannot do for those we love that frustrates and hurts us the most.
So what can we do about all this frustration? Here are my suggestions:
- Technology is our friend. When I began my journey with ALS, the Internet was in its infancy and personal computers were still a luxury in many ways. Since my diagnosis, though, technology has played an ever-increasing role in giving people with ALS more freedom and normalcy in their everyday lives. While I have not become the Bionic Man, which was a dream of many a boy of the '70s (I am one), the not-so-distant future does hold some amazing promise to come close to that dream with the intersection of robotics, brain interfaces and the further evolution of computer processing — which unfortunately has rapidly advanced due to the injuries suffered by U.S. servicemen in two wars. Take full advantage of technology to offset your deteriorating physical condition.
- Communication is the key. Perhaps the greatest technological advance for ALS is the ability to communicate. I am not referring to physically communicating, although that too has made amazing progress that has given us voice. No, what I am referring to is the sentence of solitary confinement that used to automatically come with ALS. Now we can continue to communicate with the outside world and have relationships outside of our surroundings because of the little development of the Internet. We can email, chat, network, etc., to stay connected with family and friends. More importantly, we can make new connections with others who have been touched by ALS and share our experiences, support and knowledge, and we can raise awareness in the outside world about our plight and create action to change the destiny of those living with ALS. Use any communication method you can to stay connected, involved and to avoid the isolation ALS can bring.
- Count your blessings. I know some might have issue with this because what blessings can ALS bring, right? Well it depends on the lens you choose to view ALS through. If you only view it through the lens of loss, focusing on what you have lost and will lose, ALS will consume you in a grim cloud of darkness. If you just use a lens to look back at the “normal” times in your life, you can find happiness in the fact that you had a chance to experience a normal life, which some never do, like children who face disability or people born in extreme poverty in third-world countries where they fight to survive day to day. OK, that’s an extreme example that may not provide you comfort. What about viewing ALS through the lens of freedom? Yes, ALS can and should give you freedom. It forces you to slow down, freeing you to truly appreciate life and what’s important. It frees you to focus on those you love instead of working like a hamster on that wheel, missing out on the amazing life passing by. The greatest blessing to me is that ALS has shown me the true beauty of people as they desire to help us and show us love.
- Discover new dimensions of yourself. The greatest freedom ALS gives you is the ability to discover new aspects about yourself. Maybe it is something that you enjoyed but never had time to pursue — like for me, writing — or maybe it is something new that you now have time to discover — like for me, how to build a website. The point here is take the opportunity which ALS has given you to ACTIVELY pursue new knowledge or interests or expand on existing ones, because even though ALS has shortened our time horizons, that does not mean we have to stop living each day to its fullest and pursuing happiness wherever we can find it.
- Give and love others. Ultimately, ALS has given us perspective because of the time limitation it puts on us — although that time stamp was a wee bit off in my case. Use that perspective to give the best gift anyone can receive: attention and love. Take whatever time you have, and give these gifts abundantly to anyone you encounter.
Be well and happy!
About the Author
Jeff Lester, 46, and his wife, Lisa, live in Lebanon, Mo., with their three daughters, all born after his ALS diagnosis in October 1993. In 2011, he earned an M.S. in finance and an M.B.A. from the University of Michigan, Dearborn. A former Eagle Scout, Jeff (“ragingbear”) was the founder and longtime moderator of MDA’s “Living with ALS” chat. He has written about life with ALS for MDA’s Quest magazine and the MDA/ALS Newsmagazine, and was the recipient of Missouri’s MDA Personal Achievement Award in 2006. From 2002 to 2007, Jeff served as online editor of “World ALS Research News” for the ALS Therapy Development Institute (ALS TDI).