I could write two different blog entries this morning.
One would be about waking up this morning and for a brief shining moment, before clearing my throat and coughing for the first of many times today, before having to roll over to go pee in the urine jug beside my bed, before fighting with the covers to lift my lifeless feet, before all this, waking and forgetting that I had ALS.
ALS has done so much to change my life; it is an impermeable presence, an impregnable fortress within my consciousness. It resides as a permanent unwanted guest in the home of my soul. It has captured and destroyed my legs, savaged my spirit and ravaged my body. It is attacking my will to live and my strength for life. Even one moment, no more than the brief ticking of the clock for less than a heartbeat, even one glimpse of normal, is a gift of glorious light, life itself for a moment. Waking and forgetting was an instant of bliss is a miasmic cosmos of emotional toil.
The other blog entry would be about my marriage, the loss of one of the most important identifiers in my personal being. Last night my daughter Mary and I had a long talk about things like that, how I felt within my marriage, how I tried to make it a workable relationship, how I thought it could have worked if Carla and I could have bridged the gaps between us. It was a long talk and we both had things to say. We both got heard. We both shared feelings. It was a grown-up discussion.
My marriage was important to me, as important as my children are to me and perhaps moreso. It was so important that I submitted myself to it, subsuming my personality and needs before it in the belief that this would make it work, always facing the unuttered ultimatum that if I didn't do this I would lose my marriage and family, fearing the unspoken outcome which became final reality in the end. I said and did those things that I felt needed to be done to keep our marriage together regardless of how it made me feel. I tried so hard and yet after all of that it still failed. It is an awful thing to commit your life to marriage, work hard at it, do the best you can and give all you have to give only to have it end in divorce.
Both of these things are difficult; both are real. Both of these topics make me sad; both are real. Both of these could be full entries; both are real. There is an awful lot of reality in my life these days.
Richard, I'm Beth, one of your mom's many quilting friends from our online group. I've been reading your posts without commenting but I wanted to tell you how inspiring I find your posts. Not because you are winning the physical battle with ALS but because you are facing this battle with such openness and honestly. Thank you for taking the time to share your journey. You are faithfully in my prayers.
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