Once again the subject of hope has arisen. People seem to need me to hope, as if my hoping would be meaningful to them. They seem to think that hoping will improve my situation, that hoping will slow down this disease, that hoping will make it better.
I have ALS. It is killing me slowly, softly, gently and viciously. Consider this as an example. You are loosly tied to a set of train tracks somewhere out in the prairie. You are able to eat and drink, there is plenty of food and drink, but you cannot move far off those tracks. In the distance, about 10 miles off, you see a train engine. It may be moving towards you but you are not certain. So you are on the tracks and don't feel like your life is in danger. Days turn into weeks turn into months turn into years. The train is there but you really can't recognize it. It's a dot, a speck in the distance.
Then, after a long time of being on those tracks, you notice something about that train engine. It is getting bigger, clearer, closer. As each day passes, the train rises higher on the horizon becoming more and more evident, real. As each day passes, small details about the train become visible, aggregating into a picture. Then one day you notice that several of those fuzzy shapes suddenly become a solid, single element. A part of the engine comes into focus and you know that it is moving towards you. So you call for help and someone comes.
That person whom you had hoped would be your saviour says "That train is headed for you and it will never stop. It will continue towards you relentlessly, moving at about 25 feet each day. We think it's about 25,000 feet away but we might be wrong. It could be closer; it could be farther. Regardless, each day it will come closer until it runs you down." You do the math. And now you know you cannot escape the train; it is death moving steadily towards you.
Now you also notice that the ropes tying you to the track are shortening, tightening, ensuring you can move less and less each day. As the train draws closer the ropes draw tighter. The tightening is small, minuscule really. Yet after a week, or two weeks, or a month, you see that your mobility is lessened and that you not only cannot avoid the train but are being drawn firmly into its path.
There is no escape. You are going to die when that train hits you; slowly, painfully, certainly. Along the way your range of motion will lessen and your freedom will disappear. There will be nothing you can do and the train keeps moving; relentlessly, unceasingly, slowly, deadly. You cannot hope for long, for life, for living. You can only enjoy the days that you have.
This is ALS.
How about salvation and a hope for eternal life? How about a hope for a miricle?
ReplyDeleteRichard, the imagery I was able to visualize was staggering. Not having ALS leaves me unable to "walk in your shoes" so to speak. What you phenomenally wrote in "The Train" gave me a glimpse; a realization of the spiraling tempest that ALS has forced upon you. Thank you for writing it.
ReplyDeleteI would like many people to read this as I feel your writing would help so many become less judgemental.
I, as Anonymous wrote, would like to ask the same question to you but reading what Anonymous wrote made me feel like you were slapped in the face to what you're living with. Yet, my faith makes me agree with Anonymous.
I truly believe that one must always chose life over death but saying that sounds so contrite when I think of you strapped to the train tracks with the train barreling down. Do you just give up or do you keep wiggling at the ropes tying you down? I guess it comes down to a matter of one's faith. I can't imagine life with my faith but I have to admit that I don't know if my faith would be rocked off it's foundation if I were diagnosed with ALS.
One thing is for certain; your writings force me to contemplate, study, review, and more deeply delve into my spiritual walk with God.
Thank you,
Denise
I think the message is that you must accept the inevitable. We all face a "train"; some of us can't see ours coming. I can see mine coming. Death from the train is not the bad thing, it is just an inevitable thing. Life tied to the tracks is a much bigger challenge.
ReplyDeleteI choose to live, to experience life as fully as possible, working within my limitations, struggling against the ropes, wiggling constantly. I choose to be alive until I am dead. I want to live before I die.
Life is a miracle; it is an accident that any of us is here. While some may place God as the reason for our existence I am comfortable accepting the randomness of life. I am also comfortable with the certainty of death. Where I find discomfort and am in most need of grace is the ignominy of my existence today, the loss of my physical abilities and the randomness of this unfairness.
It is for this that I pray, for grace and strength.