Perverse Little Sparrows

ALS is a perverse disease. Muscles that you can't move cramp on their own. Excess saliva causes drool out of a mouth that has no reason to drool. The smallest physical challenge is exhausting yet my mind is as strong and active as ever. Emotions are draining but I still need to love and be loved.

This morning I awoke feeling better than I have in many days. I was rested and actually felt like getting out of bed. I slept in until 8:30 AM, a big deal for someone who has his alarm set for 6:30 every morning. It even goes off on weekends; today I slapped at buttons until it muted and went back to sleep for another couple of hours.

I don't know if it is the sun that does this to me. All I can say for sure is this morning when I awoke I felt good, almost like I was getting better. Yesterday I arose in the dark, feeling tired, morose, worse. Today I waited on the sun and feel so much better. It has to be the sun.

That same sun cannot yet chase away the winter cold here in Calgary. It is still -9° Celcius. This doesn't seem to bother the junkos and chickadees feasting on the pine cones still clinging desperately to the jack pine outside my window. With the sun shining on them, they are pecking and poking at the cones that hang like plantain clusters. They move in bunches, attacking in disordered gangs, diving in and leaping away.

Yet despite this day of feeling better I know things are progressing, or regressing as it were. Yesterday I did another FRS assessment on PatientsLikeMe.com. This is a self-assessment but it is fairly accurate. When I was first diagnosed I scored a 38. Yesterday I scored a 36. The average ALS patient loses one point a month.

When I was diagnosed the neurologist said I had "plain, run-of-the-mill, ordinary, every-day ALS". It would appear I am normal even in my disease. That too, is perverse. I suppose I should be thankful I didn't have bulbar onset; those folks decline dramatically and usually have a prognosis of 18 months or less from onset. I have already had this disease 18 months and I can still drive my truck. Thankful? Hmmmmm.

I think I might sit here for a bit and watch those perverse little birds feasting on pine nuts in the dead of winter, sunning themselves in the brutal cold, leaping about without a care beyond the next branch. In as much as He cares for the least sparrow, does He not care for me too?