CHARLOTTE, NC, September 10, 2017 – There comes a point in dealing with ALS that you eventually resign yourself to the fact that you will never again be independent. It’s not so much a case of denial than it is the realization that someone will have to help you do some of the simplest things in life.
In many ways, the mental aspect of the fight is more frustrating than the physical because it relates to the ability to communicate. For example, you are eating breakfast and want to put some jelly on your toast. Since you can no longer do it yourself without taking a Smucker’s bath you ask someone to help.
Sounds simple because when you are self-sufficient you merely pick up the toast and slather it in marmalade, grape or a mixed fruit glaze of sweetness. But when someone else does it for you, you have to tell them to cut the bread, explain which flavor you desire and then make sure it is spread in the manner to which you are accustomed.
When you go through that exercise several times each day, it not only becomes frustrating for you but even more so for the caregiver who is merely trying to offer aid but who performs that task with dread fear of doing it wrong.
Time passes more quickly now. Each minute becomes more precious than the last. Healthy or not, it’s a normal part of the aging process. Too many things left to do and not enough time to do them. The difference is that with ALS it is magnified.
Time progresses at a constant pace. It never varies. It only seems like it does.
Remember taking a test in school with a one hour time limit and suddenly you look up to discover there are only ten minutes left and you are only half way through? You panic. Not enough time. Still you race through to the end knowing full well you guessed at most of the answers, leaving you with an emptiness in your brain that is less than satisfactory.
There used to be an old joke that went: “Time flies? You can’t…they’re too fast.”
Time no longer flies. It literally races.
Even when I was younger and healthy, I hated being in a quiet room with a grandfather clock and its perpetual ticking. Rooms with those clocks are always morbidly silent with only that singular sound marking away the seconds.Tick. Tick. Tick.
Tick. Tick. Tick.
For me it always seemed like the pendulum of life was slipping away. Never faster. Never slower. Always that same monotonous mechanical rhythm. In my mind it was a metronome of death signaling that time was infinite, never wavering, always steady in its perpetual continuity.
The difficulty slowly becomes one of remaining positive and optimistic. Not that I consciously tend to dwell on the ailment. It’s there and I deal with it as it comes, but constantly dropping things, fear of moving too quickly and falling, getting food on a spoon or a fork and somehow getting it to my mouth, adjusting a pillow, scratching my head and on and on can, and do, take their cumulative toll.
The inability to do routine things you have done all your life as second nature now become a burden and therein lies the knowledge that you are no longer independent.
Simply sitting in a chair and watching television is about as normal as it gets these days. If I add the joy of eating popcorn, the task becomes a burden that makes the viewing a chore rather than something that is pleasurable.
You continue to fight on, however. The battle continues while that ever-present grandfather clock keeps moving with its relentless timeless rhythm.
Tick. Tick. Tick.
Days are shorter now. Not because fall and winter are approaching and the light fades more quickly. That certainly affects someone’s mood. Anyones. Not just mine. The presence of light is always an added blessing.
But somehow the seasons merge more quickly. There isn’t as much time between football season and baseball season and back again as there used to be. Think about it. Before baseball decides its World Series champion, football season is half over, and yet, football has only just kicked off the new season.
Christmas comes faster than it used to. So do birthdays. Yet, how thankful I become to wake up to celebrate another year of life or to watch my grandchildren open their presents.
I stare at a picture of my son graduating from high school and wonder where the time went as my oldest grandson now finishes his senior year before heading to college.
It’s that blasted grandfather clock. Time marches on. It waits for no one. The best you can hope for is to get as much accomplished as possible, to savor the blessings of life and to make sure you let everyone you care about know that you love them.
Tick. Tick. Tick.
About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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