#36 My ALS Journey—Ten to Ten

[et_pb_section fb_built=”1″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.23.1″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]

I’ve been considering what it means to be a strong Christian woman. It’s a loaded question in the world of faith. What does that exactly look like? Susan Catlett was a strong woman, and as I re-read her blog, I understand what made her so.

In her book The Clouds Ye So Much Dread, Hanna Grieser answers the question “What is a strong woman?” by pointing to 1 Peter 3:6: “Sarah obeyed Abraham calling him lord. And you are her children if you do good and do not fear anything that is frightening.” Grieser notes the focus of this scripture is generally on Sarah’s submission to her husband Abraham, while the second half gets ignored. But the second half stands out: “You are her children if you do good and do not fear anything that is frightening.”

Do not fear anything that is frightening. This sentence assumes that some things we face are frightening, including ALS. The apostle Peter holds up Sarah’s fearlessness as something to aspire to. With the question of “What is a strong Christian woman?” in mind, it is worth noting that fearlessness is one of the chief traits of all great women in scripture. Grieser refers to Sarah, Rahab, Deborah, Jael, Ruth, Abigail, Ester, and Mary, Jesus’ mother, noting that while marked by extraordinary courage, fundamentally, they had faith—faith in God’s promises, goodness, justice, and His saving power. These women did “not fear anything that is frightening.” These women were strong because they fearlessly believed in God, and we are Sarah’s daughters if we do the same.

My mother, in her ALS journey, recounted her fears within the context of God’s faithfulness throughout her life. Her goal was not primarily to tell you about who she is or even about ALS. Instead, through these blog posts where she notes her fears (most of which are common to all of us), the goal is to show you who God is. He is faithful. Like my mom, we can trust him with our very lives, so we need not be afraid of anything that is frightening.

–Tricia

​Since the beginning, the hardest part of my day has been ten to ten, ten at night until ten in the morning, and that has not changed. What happens between ten and ten…I get ready for the night, and I get ready for the day; after that, it is easy.

At night, I read, play computer games (Words With Friends), and watch movies to keep my mind involved until I am sure I will quickly fall asleep. I don’t listen to audiobooks because I will fall asleep and miss the plot. I will get my money’s worth since I will be constantly replaying the parts of the book I slept through.

On many occasions, I will plug in my bi-pap breathing machine, swing my legs into my bed, pull the blankets up, and get set for sleep, only to be wide awake thinking about what might/will come with the ALS. However, by ten the next morning the day looks good. After getting in and out of the shower and getting dressed with help from my caregivers, Cliff and I are ready to go out and have fun.

In previous postings, I know I have mentioned and probably more than elaborated on how ALS is a mind game as much as a physical challenge. I am unsure which is the hardest to deal with: the mental or physical.

Here is my dilemma: I want to write what is actually happening to me physically, but I don’t want to sound as though I am complaining or feeling sorry for myself…even though I do have my moments and days of both of these, complaining and feeling sorry for myself. Mostly, I feel good. I just have ALS.

Since I am getting weaker, standing and transferring from chair to chair to bed is a struggle that I know will not get easier. It is hard not to wonder when I can no longer do this on my own.

Friday, I called the ALS Association, needing advice on my next set of physical challenges. Being proactive is important to me. I like having a plan. However, I feel as though I am getting behind. I believe this is what it means to totally trust in God. I can’t be very proactive or have a perfect plan. Each day, from ten to ten, ten at night until ten in the morning, I have to trust and believe that as each new challenge comes, my Heavenly Father is proactive and already has a perfect plan; I am glad He knows my name.

In addition to the leg cramps, the muscle spasms in my arms, which immobilize my hands, concern me; they only last for a few seconds, but that is a long time. When there is what seems like a quivering sensation on my tongue, I wonder how long it will be when I won’t be able to chew or swallow my food. This sounds pitiful, and that is not my intent. This is just how it is.

Cliff and I are coming up on the two-year anniversary of my diagnosis. All in all, I think we do well. We both have our bad/sad/frustrated times, but mostly we are good. I know he watches me and sees me getting weaker. Neither one of us really knows what to do.

The best part of our days is being out and about with all of you. We feel loved and supported by all our family and friends. It is Friday night, which means dinner out with very important people.

–Susan

[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]

Leave a Reply

Your email address will not be published. Required fields are marked *

2 × three =