What a journey! Rarely during my life have I been ill, yet, much to my chagrin, after all this time, I am still adjusting to all the ‘ins […]
ALS / Family / Grief / Jesus / Lament / Lou Gehrig's Disease / Outings / Susan's Steps
#62 My ALS Journey–Almost Normal
Almost every day, Cliff and I are on the move. We do this with intention, primarily because we want to avoid thinking about my condition. I mentioned in […]
ALS / Family / Grief / Jesus / Lament / Lou Gehrig's Disease / Outings / Susan's Steps
#61 My ALS Journey–Tethered
“Tethered: The utmost length to which one can go in action; the utmost extent or limit of ability.” Last night, while sitting in my power bike, watching […]
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#60 My ALS Journey–What Would My Mother Say?
It has been exactly a week since I had my Supra Pubic Catheter surgery, and some people have been a little surprised about my openness on such a […]
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# 59 My ALS Journey–Call 9-1-1
As the Emergency First Responders headed toward the front door from our bathroom, I yelled to Tricia from the back of the house, “Get their picture!” Cliff was […]
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# 58 My ALS Journey–Catheters and Urine
Each week, as I prepare to write this blog, I spend time reflecting on events that impact my life, either directly or indirectly related to my ALS, keeping […]
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#57 My ALS Journey–Gimmicks and Gadgets
This past week, I was jazzed. I like being proactive and figuring things out. I am part of a Facebook group that is only open to ALS patients. […]
ALS / Family / Grief / Jesus / Lament / Lou Gehrig's Disease / Outings / Susan's Steps
#56 My ALS Journey–Walk and Roll With Me
After being diagnosed with ALS in August 2011, our world was turned upside down. We were advised: you have a life expectancy of two to five years, get […]
ALS / Family / Grief / Jesus / Lament / Lou Gehrig's Disease / Outings / Susan's Steps
#55 My ALS Journey—Some Really Good Things
“Grief is a part of what it means to be human in a broken world. And once you wrap your heart around that fact, your sorrows have a […]
ALS / Family / Grief / Jesus / Lament / Lou Gehrig's Disease / Outings / Susan's Steps
#54 My ALS Journey—The First Step
“It is not down on any map; true places never are.” Herman Melville As they say in many 12-Step Programs, “Hi, my name is Susan and I have […]
ALS / Family / Grief / Jesus / Lou Gehrig's Disease / Outings / Susan's Steps
#53 My ALS Journey—My Anniversary Date
“Lady, that’s where Jasper is. He’s in the green house over there!” I’m driving with my just six-year-old granddaughter, Selena, and I strain to turn my head to […]
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#52 My ALS Journey—The Electronic Dilemma
It’s a good reminder here that my mother rarely asked for help. She was highly independent, and even throughout her diagnosis, I was called to come to […]
ALS / Family / Grief / Jesus / Lou Gehrig's Disease / Outings / Susan's Steps
#51 My ALS Journey—Rule 15: Be a Crusader & Know Your Disease
Almost every post I add to this blog guts me. Of course, I miss my mother, but I am also overwhelmed with the sweet gifts her life continues […]
ALS / Family / Grief / Jesus / Lou Gehrig's Disease / Outings / Susan's Steps
#50 My ALS Journey—Well Deserved Tantrum
I am very sorry indeed to hear that anxieties again assail you. (By the way, don’t ‘weep inwardly’ and get a sore throat. If you must weep, weep: […]