Everyone has the same amount of time each day. 24 hours a day. 1,440 minutes a day. What we don’t have is the same amount of time left in our lives. Not only does ALS end life before victims are ready, but along the way ALS takes away more time each day.
Simply put, I’m running out of time. I win a few battles here and there, but ALS is winning the war.
Each day ALS takes away more time from my daily Do List and my lifetime Bucket List. For example, I want to digitize a few thousand photos from the 1970s to the early 2000s. Photos. Paper photos. Additionally, another goal has been to publish hundreds of family photos taken from my parent’s and grandparent’s collections, scanned and digitized a decade ago; still saved but not published to share with my family.
Movement requires energy. ALS takes away the energy required to move; replacing it with muscles that do not work properly and a breathing mask tethered to a lifesaving machine that does the breathing for me, yet becomes a limiting anchor which itself inhibits movement.
Somewhere there is a clock counting down to my last week, my last few days, my last hours and minutes of life.
I don’t know when, but it could be soon; life should have ended sooner because the ability to breathe is failing; thanks to medical technology and an alert and helpful medical staff, life has been extended. But it must come to an end.
As of now I can breathe on my own for about half an hour. That’s perfect for a bath and a visit from a daily health care worker or a TeleHealth call, but not much more. I eat six meals a day and at about 15 minutes each, that accounts for 90 minutes without ventilator use. 12 trips to the bathroom each day account for another hour.
More than 20 hours a day are devoted to using a mask to breathe. As much as I want to do more each day, each day I do less. Yes, I know it could be worse but it doesn’t matter.
I’m running out of time.