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My husband and I, my sons, and my parents were all gathered around our large round patio table in my backyard when my mother shared the news of her ALS diagnosis. I remember looking at her as if through a cloud or thick fog, trying to make sense of what she had just said. ALS? To clarify the situation, my mother reminded me of the book Tuesdays With Morrie, wherein the haze lifted, and reality set in. Everyone at the table started sobbing, shaking, hugging. At the time, we had no real understanding of the disease and its progression or what it would mean for any of us.
Hands cradling my face, weeping uncontrollably, I said the first thing that came to mind.
“Is it hereditary?”
Oh, yes. I said that.
I want to defend myself regarding my statement, but only the idea of being a selfish little worm of a human being comes to mind.
The only thing I genuinely remember at that moment was experiencing intense fear. In the short time between learning of her diagnosis and those words coming out of my mouth, fear of my own future, the Great Unknown, crept in.
Thankfully, my mother was a learner and educator at heart. She determined early on that she would beat some of the fear of ALS by educating herself and others (myself included) about the disease. This helped us all as the disease progressed. You’ll see more of this as you read subsequent blog posts.
And no, generally, ALS is not hereditary. But I didn’t know that at the time, did I?
–Tricia
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Part of the requirements for my long-term care insurance is a monthly visit by a nurse to document the progress of my ALS Illness.
When asked, my neighbor Maggie, a Registered Nurse, agreed to work with me and report to my insurance company. By appointment, she came to my house Sunday afternoon for our first official visit. As she was doing her assessment, I started laughing. We have lived next door to each other for over five years and have only waved to each other with minimal conversation. Now she is asking me the personal, intimate details of my life. I think we will be friends.
Sometimes, I believe the insurance company thinks I am going to secretly get well, not notify them and continue to collect the money. Boy, will they be surprised! They also require daily notes on my mental stability (happy, sad, agitated, anxious…) from my Care Givers, Lisa and Anna. In October, I have to reapply. I don’t think they understand ALS.
Physically, I am not sure what is happening. On a scale of 1 to 10, with ten pre-ALS and one being…well, you know, I think I am only a 7 or 8, which I am thankful but at the same time, it makes me realize I am only at the beginning of this journey and I can’t walk at all. In addition, the muscle spasms in my hands make me nervous. Even though it doesn’t happen often, it still happens.
Am I sure he is happily waiting for me?
A favorite thing for me to do is to bike around the mall and my neighborhood. In talking with Cliff today, I told him I like the freedom it gives me. I can go wherever I want, and no one looks over my shoulder. As I was biking around my neighborhood, I again chuckled to myself (I do think I am very funny). I thought I probably should not go very far since I didn’t have my phone and I didn’t tell Cliff where I was going.
How old am I? Can I go around the block and cross the street? It is definitely a good thing I have not lost my sense of humor (Anna, write that down in your daily notes) or my respect for Cliff. I don’t want him to worry unnecessarily. He already worries too much. Next week I will ask him if I can go around the block alone. I love that guy.
-Susan
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