Dear Wake Up Family:
Thank you so much for your many prayers, concerns, cards, letters, and emails. Shirley and I are overwhelmed by your love and compassion. We wish we could respond to each of you, but I’m sure you understand our limitations. As you know, I was diagnosed with Bulbar ALS at the end of March 2018. Considering my situation, I am doing well. I have no pain. I can still walk and use my hands and arms, although I am not as strong. I tire easily. I have problems with neck and back muscles, swallowing, speaking, and breathing. These problems are typical for Bulbar ALS.
Emotionally, I would describe this disease as “a forced march.” It feels as though I have been captured by an enemy and taken as a “Prisoner of War.” I am being forced to go in a direction against my will. I am marching toward complete paralysis and the grave. Those who have walked this road before me say the march is noted for sorrow, anguish, and increasing helplessness (not only for the victim, but also the victim’s family).
A little more than a year ago, Shirley noticed that I had become more emotional; ordinary things would make me cry or laugh inappropriately. She didn’t worry about it (she thought it was related to aging) because my overall health and strength seemed fine. Then, I began to lose my ability to speak in April 2017. We look back now and understand what was going on. The first thing ALS did was damage the emotional control center of my brain and then it moved to the motor neuron circuits that control muscles, speech, swallowing, and breathing. I have had waves of depression and this leads to moments of sorrow and grieving. Unfortunately, anti-depressants and natural remedies do not help with Bulbar ALS depression because they work on a different part of the brain.
Depression is something you have to experience to understand it. Now, I better understand people who suffer with it. It is a painful state and difficult to explain, but it is real. There is also some involuntary anxiety (which often goes with depression) because I don’t have a timetable. I do not know when or how fast I will lose control of my legs and arms.
There are positive aspects in our situation. Shirley and I are experiencing the presence, goodness, and grace of the Lord in our suffering. Learning to trust Jesus to get us through the “valley of the shadow of death” has been a new faith experience. Overcoming waves of grief and sorrow when your emotions have been whacked and your body is weakened is an important dimension in faith that we are learning. Jesus gives us the strength and courage to face each wave as it comes. Our faith in the Lord and our love for Him have not changed. Our anchor holds because it is attached to the eternal Rock of Ages! In fact, we feel His presence even more closely. We often pray with tears and with rejoicing for what He has done and is doing. We know that Jesus sees our situation and He abides with us because we abide in Him.
Baseball legend Yogi Berra used to say, “It ain’t over ’til it’s over.” The Lord can step in any minute and change the situation or He may not. Either way, we know He is doing everything that infinite love and wisdom dictates. The curse of sin may have its way in our bodies for a time, but eternal joy is coming for everyone who puts their faith in Jesus!
We plan to join you around the glorious throne of the Father, singing praises to Him and to the Lamb!
Larry & Shirley