#4 My ALS Journey—Fighting Fears

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This particular post cuts me to the quick. As a kid, my mom worked, and when I was very little, especially when it got dark early, I feared she would not remember to pick me up from the babysitter’s house. When we learned of her diagnosis, my heart once again embraced those fears of separation from my mother like a tidal wave.

In this post, my parents travel to Montana to see family. My dad reports that she cried all the way. I can’t imagine the fears he was facing at this point too.

I so appreciate the fact that in this post, she is tucking in her crazy (ok…taking her thoughts captive), but she still is assessing how this impacts her real life. She knows the Lord is using ALS for her good and His glory, but she’s not quite ready to talk about that yet.

And that’s where this blog, Sweet Speakable Sorrow, really comes into play. It’s at this point my mother decides to name her demons and talk specifically about what’s going on. Life is unspeakably sad.  Death, pain, sorrow, and sin are unseemly. We want to live with polite smiles that hide our miserable situations.

Life on earth offers us only a disenfranchised grieving experience, one that is socially unacceptable, with no hearer, no language, and no path on which to process the depth of our despair. The pain is unspeakable.

Until Jesus. My mother understood that speaking of her fears, grief, and suffering with Him brought joy to her grief. We now have a hearer in Jesus, language through biblical lament, and a body of believers to offer the comfort of God. What was once unutterable is now sweet speakable sorrow.

–Tricia

Fear: “a distressing emotion aroused by impending danger, evil, pain…whether the threat is real or imagined”

My most fearful days occurred shortly after my ALS diagnosis as Cliff and I headed out on a road trip to Montana to visit family. At that early point in my journey, I knew enough about ALS to be extremely afraid of the challenges that were to come my way eventually. However, I totally allowed the fear to overwhelm, consume and immobilize me. I am smart enough to know my fear, my emotions, and my reaction to that fear are totally real and understandable. During the week we spent in Montana, I allowed myself to believe all of the ALS symptoms were going to hit me at once, I would die in Montana, and I would not see my daughter, Tricia, again to tell her goodbye. I think I cried every day and was afraid to go to sleep at night because I wouldn’t wake up in the morning. That was September 2011, and it is now January 2013. I am alive and well…I am thankful that at this point in my journey, I am only having problems with my feet and legs. But most importantly, I enjoy many precious moments with my daughter, which we both treasure greatly.

As for my fears, I still have my moments/minutes/hours/days. However, I did determine I would try not to let my fears immobilize me. I live in the moment, break down the big obstacles into small parts, and fill my days with positive friends and activities. As for my spiritual growth…that is another story for another day…perhaps next week, and then again …

–Susan

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