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This is one of my favorite pictures of my mother. She’s pointing at the photographer and clearly giving him some instruction. My mom loved to take the lead. Most of her passwords when she was alive contained, in some way, the word “bossy.” She always gave instructions with a smile.
My mother worked for the Sacramento Sherriff’s Department for many years. She was a Matron in the county jail, worked security at the Sacramento International Airport, and finally became a detective investigating crimes against children. Everyone she ever arrested said she was the very nicest at doing it.
In a way, I think she was trying to “boss” ALS. Yes, she knew it would eventually take her, but she wouldn’t let the disease own her. As I reflect on this today, I laugh, thinking she really did point at death, smile, and ask, “Where is your sting?”
–Tricia
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When we returned from our trip to Carmel this week, I read the book, Until I Say Good-Bye, My Year of Living with Joy by Susan Spencer-Wendel. She writes her story of having ALS and her year of devoting herself to joy. I don’t usually spend much time reading about ALS. I find it can really discourage me, but I was fascinated by her story. Then to top off the week, Cliff and I attended the ALS support group meeting this morning. The meeting is not much different than an AA meeting, “Hi, my name is Susan, and I have ALS.”
Each of us has the opportunity to share whatever we want, but the focus is usually on our current physical struggles. This may sound depressing, but I usually come away from the group glad I attended. Also, there may be someone I can encourage. I never want to miss that opportunity. I get a sense of belonging from the group: we each have our own story, yet we all share the same story.
Having read the book and attended the meeting this morning, I am on ALS information overload, leaving me with significant anxiety. I am usually fairly good at avoiding anxiety by keeping busy and thinking good thoughts, not bad, happy, and not sad. One of the symptoms of ALS is muscle/nerve twitching. In her book, Susan Spencer-Wendel describes it as feeling as though you have butterflies under your skin. So far, it has not interfered with my sleep. Even though it is at night when I am most aware of it, it is not painful, just a reminder. Usually, the twitching is in my legs, but lately, I have noticed a slight twitching in other areas of my body. It makes me conscious of more muscle deterioration.
The problem with having ALS, it attacks muscles, not the mind. This morning in our support group, a fellow shared how he could no longer swallow or move his tongue, which makes eating impossible. He has a feeding tube. I try not to dwell on these things because, for several days after, I think I am having trouble swallowing, or I think my tongue is twitching. It is amazing the games your mind plays on you.
Then why go to the group if it leaves me thinking about all the things that can go wrong? First, I love the people, there are many brave heroes in the room, and I am proud to be part of them. Second, I look at the others in the group and think, “Well, I am not as bad as they are.” The reality is I am as bad as they are, and I have ALS. It forces me to face my reality within a group that is very supportive and honest about life and death, there are no games, but the side effect is anxiety. It is 1:30 am, and I am trying to think positive, happy thoughts. It is not working so well for me. I am experiencing some good old-fashioned anxiety.
Okay, for anxiety, there are a couple of options, drugs or prayer. I am all for prayer and hesitant about drugs. I always look for positive ways to cope with my physical limitations and mind games. I know many people use some type of sleep aid or anti-anxiety medication, but I am trying not to go that route until absolutely necessary. The advice I am frequently given is that it is okay and not too uptight about it. My hesitation is probably the fear of losing some control. My family will tell you I love being in control not only of myself but anyone around me. I think they are making that up. That could not possibly be true, could it? Okay, if it is true, doesn’t everybody need direction, and isn’t it wonderful of me to be willing to take that responsibility? I don’t believe I will be as effective if I am a little loaded. If I do the drugs, I definitely want to be loaded. Otherwise, what’s the point?
Now some people think this would be a wonderful time to pray since I am awake anyway and feeling anxious. The problem is I have never been a great one at praying at night. If I couldn’t sleep before, then I really can’t sleep. My mind goes wild thinking of everyone, all their situations, and possible solutions. So I will pray for you in the daytime when the light is on.
What I love is God’s mercies are new every morning. I don’t have to wake up with the anxieties I went to bed with last night. This is the day The Lord has made, and I will rejoice!
–Susan
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