Beasts, Jagged Pills and Being Here



I have been down in the dumps lately. Brian has small progressions. Nor big ones, but about what you would expect. His left hand is not much on the fine motor abilities. Meaning he can still grab a cup of coffee with it, but typing not so much  with the left hand. His legs need the orthodics to be moving any great distance. Considering the left hand issue showed up mid-June and the left leg in February, this is pretty typical stuff. Slowish actually as progression goes, so no cause to think he will cease walking or using his hand/s anytime soon. We will do a cane outside for safety when the snow comes, it just makes sense. Or anywhere else a cane is needed for that matter.

Brian has been down sometimes too. How could he not be? The mornings are hardest. The Rilutek morning dose makes him sick to his stomach, and his energy level is so low at that time too (and also later at night). There is no getting around the fact that the guy who was building decks and sheds one year ago is using a bath chair so he does not fall in the shower, and if that get me you can sure Brian has times where that half kills him. I am here to say ALS sucks, sucks, sucks. It's one of your worst damn nightmares come to life, and I am convinced a part of your soul never stops saying "what the hell??!!".  That part just can't be sugar coated.


I worry about having feelings that are hard for others to handle. We are not always positive, inspirational, or live affirming. Some days, some moments this jagged pill is just way to hard to swallow.


Then poof, this morning Brian starts talking about making reservations for an Isle Royal  trip in Michigan in May. Yes, May. Who knows how things will be then, but whatever we will go ahead and plan it anyway. We can't live in "might happens" any more now than we could before. It's a secluded Island on Superior, a National Park actually. It is reachable only by Ferry or plane.

So I talk to Brian and myself about living in the now, about focusing on what we can do not what we cannot do. Avoiding falls, eating well, stretching, relaxing, pacing himself all helps. We both feel so much better focused on what we can do and what we have together. Grab some more water, deal with the pill. Acknowledge the pain but keep living our lives I think is the key to coping with this. My "push it down low and march forward" method does not work so well in this case. The beast bobs his head back up and yells "I'm here". Okay, we get it you're here. So are we. We have today and we will enjoy it, even with a beast along for the ride.


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