Monday, 2 June 2014


I sit here in front of my keyboard, my eyes bleary, red, damp from the effects of a wakeful night. I didn't get to sleep until after 4:15 AM; that was the last time I remember looking at the clock. Then my phone rang at 8:22 AM. I managed to get back to sleep at around 9, fitfully. I finally gave up, between the pain in my lower back and the light of day streaming into my window, at about noon. I got out of bed and got dressed.

One of my three Home Care workers will arrive shortly. She is due at 1:00 PM however timely arrival is almost impossible in a business where you are dealing with the ever shifting needs of patients like me. Not all Home Care patients are terminally ill. In fact, very few of them are. Most are infirm from illness or suffering from the effects of aging. Of course reality is that we are all terminally ill; it's just that some of us get that label a bit earlier than others.

When she finally arrives to help me with my Range of Motion exercises, it will likely be right in the midst of this pathetic effort at writing. My eyes can barely focus, my fingers tired with the effort of lifting up and down. There is, however, a good thing to be said of this. My exhaustion today is not the exhaustion of ALS. It is a plain and simple tiredness from lack of sleep, a condition I have had before and will likely have again, a condition I share with much of humanity.

My daughter, Mary, had a baby boy a few days back, bringing my grandchild total to three. Quinn is the first grandson. Just yesterday she posted on Facebook how tired she was, how little sleep she was getting. I understand how she feels this morning. Fortunately for me, I will be able to take another shot at sleeping tomorrow; she will still have a baby to wake her up several times a night.

It's an odd kind of reversal if you think about it. I am the one with the passing inconvenience while she has a lifetime commitment. Quinn will be waking her from sleep for many months and years; she will spend many nights and days over the coming months feeling the exhaustion of motherhood. I, one the other hand, will go to bed tonight and sleep, regaining my strength and the ability to face another day.

I have ALS; I will spend my short life committed to living with this disease. I will face other sleepless nights worrying and wondering, awakening to the exhaustion of my illness. She has a child and it is my fervent hope that Quinn grows up a healthy and normal boy. As his childhood passes her work will shift from motherhood to parenthood; she will regain her strength to live a wonderful life with her son, daughter and husband. It is as it should be.

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