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I still don’t want to talk about Clinic. Clinic was brutal. Often other ALS patients would be waiting for their appointment in the waiting room. Many times, those patients would be further along in the disease and we would see with our eyes what we could expect my mother would endure as the muscles in her body stopped working.
If you need just a hint of what that experience might look like, think of laying in bed with an itch on your nose. In real life, you can reach up and scratch it. In ALS life, your arm can’t move, but you still itch. Consider how often you turn or move in bed at night to get comfortable. Now, imagine not having the ability to do so.
During Clinic, my dad moved like he was in a dream. His eyes were unfocused, looking somewhere into the atmosphere, wishing he was anywhere else. My mom got energy from the learning opportunity and the problem-solving. I tried to listen and be present. It was exhausting for us all.
The doctors were amazing, caring, thoughtful people who knew the relationship they were building with her would come to an end. I think of them often as they deal with their own grief experiences.
–Tricia
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Talk about an emotional roller coaster. Every three months, on a Friday morning from 9 AM to 1 PM, Cliff and I spend our time at the ALS Clinic. It is a long morning. During those four hours, we will see two or three neurologists, a nutritionist, a social worker, a physical therapist, an occupational therapist, a respiratory therapist, a researcher for a clinical study, a psychologist (which I need after my morning in Clinic), a representative from the ALS Foundation and…whoever else has an interest in ALS. WOW, what a morning. Let me tell you the good and the bad.
The good part, they all talk about me, compare notes, and make suggestions for better living, which is both physically and mentally exhausting. Some days I can actually make myself believe I am whole and well, and this is only a dream, but then I go to the Clinic, and once again, I must face the hard reality, I have a fatal illness. We discussed my breathing, muscle strength, and possible swallowing issues during the clinic. This is such a mind game…it is hard to imagine I have or will have all of these symptoms, things that are just a normal part of everyday life take on the characteristics of ALS. Yet, each morning I wonder what part of my body will work or not…
The part I play, having a disease with a mind of its own, is to do my best to live fully, love lots, and play hard. John Piper wrote the book Don’t Waste Your Cancer. I don’t want to waste my ALS. My life has been about encouraging, teaching, and loving others to be their best. It is now my turn to be my best and live out all those things I have shared with others through the years. So please remind me if I slip a little. Some days I do.
Today was my first day with a personal home care provider. It was our first date, and she saw me naked. We didn’t even take the time to court. I will let you know how that goes.
–Susan
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