By Mark E. Smith
I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.
I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?
Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?
Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.
My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.
Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.
I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?
I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.
PowerchairDiaries 
This is beautiful and timely. I am working on getting through the mourning of losing the life I thought I would have at this point, before we brought a child with FASD into our home and adopted him. It’s been about 2 1/2 years. I feel like I should have been able to gain more acceptance than I have by now, but each new challenge at each new stage has set me back.
Getting on with some support groups on Facebook helps. Some. My challenges are in a whole nother universe than yours, but as you wrote in a previous post, our suffering loses no validity relative to someone else’s. It is what it is, and our new normal is gradually sinking in. And when I get comfortable it will change again. Such is our path.
I am sorry you are struggling with pain. My wife has a similar struggle, and I feel helpless to do anything about it. It’s degenerative as well, and will only become more debilitating. Still, she keeps a positive attitude and manages to run circles around my “able bodied” ass all day. I don’t know how she, or you, do it.
On another note, did you hear we are having our 30th reunion soon? It may have even been last night. I have yet to come to one. I think if I knew you were going I’d be more inclined to consider it.
Love it!
Mark and Holly, so poignant . . . . heartbreaking and beautiful all at the same time.
Sending love and prayers, and thank you for sharing your lives with us. -Friend of a Friend
Mark and Holly …we are praying for you. We are so grateful for your presence in our lives. Anita & Carl