Time… the fourth dimension. We can’t see it. We can’t touch it. Yet, it dictates every facet of our lives. We say it is on our side or against us. One thing is certain . It never stops moving forward.
It’s crazy, to me, how much time plays a role in my life. When we are kids, time seems to move so slowly. We can’t wait to grow up. Then, as we get a few more years under our belts, we wish time would slow down or, better yet, reverse! Am I right or am I right!? We watch our children grow. We see our family and friends change and the world around us continues to grow.
Time, as it pertains to life with ALS, is ever present. Just about everything in our lives hinges on time. My prognosis is based on estimated average survival time from diagnosis. We schedule much our life around doctor appointments, infusions, and other medical appointments. We measure disease progression by when the time comes to need certain devices; i. e. walker, power wheelchair, speech generating device and respiratory support. Then there is the lingering question, “How much time will I really get? “
Unfortunately, I haven’t quite figured out how to control time or how to see the future. Although, I have mastered the ability to look into the past and see with utter clarity! In all seriousness, while time for pALS usually carries a negative connotation we don’t have to let it be that way. The fact of the matter is less time is still time that we have. There is no reason we can’t live out the time we have left on our own terms and as our best selves. ALS takes so much away from us but we can choose to rise to the occasion and not let it snuff out our soul.
No matter what it is you are facing in life, be thankful for the time you have and don’t let it slip out from under you.
You wrote: “There is no reason we can’t live out the time we have left on our own terms…”
Very wise.
I have a suggestion for you that I hope will improve your life at least just a little.
My PALS (RIP) and I, we made no plans, we didn’t say “We’ve got to see XYZ before the end comes.” We knew that each day, something unexpected would come up, or another body part might fail.
So instead, we lived life hour by hour, this way: When we woke up, we would see what condition we were in, see what was possible or not, and then we would plan that single day to make the best of life with the current disability that popped up the night before. This kept us from being too frustrated, and made each day a success.
Good luck to you.
Great advice ! Couldn’t agree more !