Hide & Seek: The game of life | Dear Diane
Houston, 1998. Diane is slipping away from her ‘normal’ non-ALS earthly life. Here’s some of what I experience when I visit in January and April.
Visible and invisible changes announce your latest loss
The search is on for better coping techniques and technologies
Interpersonal dynamics stretch yet again to accommodate the new normal
Your circle of friends able to communicate with you is shrinking,
as is the circle of health-care providers ready to deal with
the unrelenting challenges of living with ALS.
Anger and frustration spill over from everyone including me
There aren’t enough hours in a day to contain your urgent desire to articulate
everything you want to say before your voice goes silent.
Love and affection find new ways of expression and
new ways of retreating into scared, lonely silence.
Denial raises its beguiling head as yet another piece of normalcy disappears,
replaced by a mechanical or physical workaround that
further increases the distance between you and me, Us and Them.
Whether anyone says so or not.
Time runs away before our eyes
through an ALS-shaped hour-glass
Accelerating into a stressed-out minute-waltz of life not yet lived
It jams the circuits of daily life with conflicting requirements, demands, needs, emergencies, decisions, adjustments, goodbye to this, hello to that, never-expected moments of small losses accumulating, screaming silently for attention NOW.
Distracting, debilitating exhaustion sets in
Eating loses its joy food by food, table talk by table talk
Jokes diminish, conversation lags
Heaviness descends around the family table
Diane doesn’t eat here anymore.
And everything has turned a shade paler.
Diane got her feeding tube in February, and wrote the following words in April 1998.
Hide & Seek: The game of life
For almost half of my life I struggled with the need to be honest with God. Since God knew everything anyway, I really didn’t have a choice in the matter. I was tempted to think that arrangement was inequitable, but I certainly didn’t want him to catch me thinking he was unfair. I cringed whenever I heard, read, or thought the words of Psalm 139, “O Lord, you have searched me and you know me. . . . you perceive my thoughts from afar. . . . you are familiar with all my ways.” As far back as I can remember I was convinced that if anyone really knew me, they could only condemn me.
I don’t know exactly how or when it happened. I do know that the fact that God knows me fully is no longer the terrifying thought it once was. Instead, it has become an incredibly comforting reality in my life. Have I somehow cleaned up my act enough that I no longer must feel ashamed and exposed before God? Not at all.
There were likely several influences at work in this transformation. Of one I am certain: God has placed some of his people in my life, primarily my husband, who do not turn away in disgust when they discover those disappointing or even disturbing flaws in me. In fact they love me more as I allow them to meet the real Diane. When I began to experience and accept love from people who really knew me, I could begin to understand the nature of God’s love and the relief of openness before him.
All of my life I had been taught that God loved me. I thought I believed it. But I couldn’t understand or enjoy his love until a few of his people modeled it for me. Yes, God knows me. And he loves me!
Thank you for being one of those persons who didn’t turn away from me in disgust when they discovered “disappointing or even disturbing flaws in me.”
Only in my late 40s did I find courage to come out of hiding from God and a very small number of human beings: my 12-step program sponsor, my husband, and my therapist. I can’t think of anyone in my childhood, teenage or younger adult years who might have been able and willing to hear me without trying to change me.
When I was a young mother, in my late 20s, I tried speaking with a highly recommended Christian counsellor about my deep depression. Her answer didn’t encourage or embolden me. She told me I needed to go home and submit myself to my husband. How she came to that conclusion is still a mystery.
I also tried sharing in a prayer group of older women (older than I) the fact that being a new mother at home alone with two babies was overwhelming me. I told them I needed help! I can’t remember whether I used the word ‘depressed.’ I just knew something was wrong with me. To my dismay, only one of the women understood and empathized. A couple of others told me I should get over it, it would only get worse, and I should thank God every day for my wonderful husband who was out there blessing so many people!
I don’t know whether you ever had experiences like that. For years I didn’t seek help from anyone remotely connected with the church or with God.
I remember a little song we used to sing as children—“You cannot hide from God, no matter what you do….” It always raised fear and shame in me. No doubt precisely what someone hoped it would do.
But I don’t hear you talking about that kind of God. I hear you talking about someone who wants nothing more than to smile your way, and let you know you’re beautiful just the way you are. Not because you feel like it, and not because of what you’ve done or haven’t done. But just because you’re you! (Thank you, Mr. Rogers!).
Indeed, you are God’s beloved daughter child, with whom God is well pleased—just because you’re you!
Love and a big hug,
© Elouise Renich Fraser, 16 October 2014