I chose this topic as my introduction to you as a regular MDA blogger because it pretty much summarizes my nearly 20-year journey with ALS. When I was diagnosed Oct. 1, 1993, just before my 27th birthday, there is no way I could have dreamt that I would be here now giving sage advice like the old man in so many stories you read.
My journey isn’t some extraordinary tale where I have an unusually slow progression or my family is wealthy enough to blunt the impact of the disease. My progression was very typical for limb onset, as I have been on invasive ventilation since December 1997 and basically have been a quadriplegic since around the same time. Monetarily, I definitely have not been blessed with wealth and I fell in the hole where I made too much to qualify directly for poverty-based programs like Medicaid, so I believe my experiences will be fairly typical for many who have the unfortunate luck of having Lou Gehrig’s disease enter their lives.
When I was diagnosed with ALS and essentially was told by the doctor to go home and plan my funeral, I was shocked and mourned what I thought was going to be the untimely end to my life’s journey. But a funny thing happened on the way to my funeral — I found a happy and fulfilling life! The basic realization I came to as the shock of my diagnosis started to wear off was that I would live my life as normally as possible on my terms, not what ALS would be determining for me.
This mindset alone has been extremely liberating and has guided me as I have taken on each challenge or obstacle that ALS has directly or indirectly thrown in my way. It has given me the ability to not accept my increasing physical limitations as walls that restrict the paths I could take in my life and that create an ever-shrinking box for me to live in. This mindset made me question every expectation or piece of advice given to me by well-meaning doctors, nurses, social workers, ALS organizations, acquaintances or family who did not understand ALS — or even worse, thought they knew the best way to cope with ALS, even though the lens through which they viewed a life with ALS was colored with fear that their life would not be worth living if they lost the physical aspect of their life.
As a single man, I refused to accept the handicap that the world seemingly was putting on me and expected me to accept as my fate. At first, this meant continuing to expect the normal life events such as marriage and having children, which I had planned on and desired. This is where I was blessed beyond any expectation — the woman I loved agreed to take on ALS by my side as my wife. We were married nearly a year to the day after I was diagnosed. Her strength, determination and perseverance have matched and in some ways exceeded my own, allowing me to achieve as normal a life as possible as we worked and continue to work together to defy the odds.
I know, I know some of you are anxious for some concrete examples of what I mean by "minimizing the impact of ALS." For readers who are newly diagnosed with ALS, there are two pieces of advice I hope you heed:
- Only plan for things you cannot plan for later, such as voice banking and adjusting or shifting career opportunities if you want to work as long as possible.
- While you’re still physically able, be sure to take as much time as you can to enjoy activities that involve physical abilities, especially those on your so-called bucket list. If you spend this time either trying to hold on to the life you had before ALS, or focus on planning for the life you will have because of ALS, you will regret the time you had during this period. I know I do.
For actual things that will counter the impact of ALS as your symptoms progress, there are thousands of big and small ways to achieve this. This will be a recurring theme in my posts. There are some things to absolutely resist. You will be advised frequently by medical professionals to make your home a mini-hospital or to go to a nursing home, especially if you go on a ventilator. It is absolutely unnecessary. For instance, you will be told you have to sleep in a hospital bed. In the 15 years I have been on a ventilator, I have spent a grand total of one night in a hospital bed when sleeping at home. The rest of the time has been spent in a regular king-sized bed with my wife.
One more thing: Each day, make it a priority to get out of bed and put on normal clothes. Yes, this will require a little more effort for both you and your caregiver, but it is essential to having any sense of normalcy in your or your family’s life. If you give in to the temptation of convenience, it will ultimately make your life, and that of your caregiver, much more difficult as your world will shrink into an ever-smaller box that only revolves around your physical care — instead of your physical care being an inconvenience that revolves around your life.
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).