I've told tales about how my family abandoned me in my hour of need. Unfortunately, they are true. However, I think it's important to let you hear about what my family had to endure as we went down the rabbit hole of fast-progressing ALS with a side of FTD (frontotemporal disease).
It must have been June 2013 that I last felt relatively normal. My father, stepmother, and stepbrother came out from Ohio for a visit. I was using a manual wheelchair but able to self-transfer. I thought I was handling life's challenges well. Although, I was blithely cutting people out of my life for what I percieved as grave infractions.
First to be cut was my sister, the one related by blood and closest in age to me. She and I have always had very different personalities and have clashed many times on a variety of subjects. This time it was following a shared vacation to Maui. I'm an avid photographer and took many photos despite failing strength and coordination in my arms, hands, wrists and fingers. Each night I patiently combed through every photo, checking quality, composition, applying labels, cataloging, and posting the best to Facebook.When we returned, I set about working on some collages and was particularly pleased with the one I made of this sister and her husband. I posted my creation to Facebook then sat back to receive the kudos. What I got was complaints about the provider I used between my sister and her best friend. Couple my disappointment with a long vacation, close quarters, and very differnt personalities and I was just done..
Done was my operative word. I looked through the lens of "how is this serving ME? " and I got big on setting boundaries. Healthy activities if instituted properly. Damaging and alienating, if done wrong. I let every tiny irritant drive me crazy and I felt that I owed it to myself to purge all negativity from my life.I kept thinking, "Life is too short for _______. "
It must have been June 2013 that I last felt relatively normal. My father, stepmother, and stepbrother came out from Ohio for a visit. I was using a manual wheelchair but able to self-transfer. I thought I was handling life's challenges well. Although, I was blithely cutting people out of my life for what I percieved as grave infractions.
First to be cut was my sister, the one related by blood and closest in age to me. She and I have always had very different personalities and have clashed many times on a variety of subjects. This time it was following a shared vacation to Maui. I'm an avid photographer and took many photos despite failing strength and coordination in my arms, hands, wrists and fingers. Each night I patiently combed through every photo, checking quality, composition, applying labels, cataloging, and posting the best to Facebook.When we returned, I set about working on some collages and was particularly pleased with the one I made of this sister and her husband. I posted my creation to Facebook then sat back to receive the kudos. What I got was complaints about the provider I used between my sister and her best friend. Couple my disappointment with a long vacation, close quarters, and very differnt personalities and I was just done..
Done was my operative word. I looked through the lens of "how is this serving ME? " and I got big on setting boundaries. Healthy activities if instituted properly. Damaging and alienating, if done wrong. I let every tiny irritant drive me crazy and I felt that I owed it to myself to purge all negativity from my life.I kept thinking, "Life is too short for _______. "
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