Occasionally, people have mentioned that they think I am so brave to share my ALS journey in such a public forum. I certainly don’t feel brave.
Writing about my weakness and my fears is simply a way to cope. If I don’t express it, I feel like I will burst. You know that feeling when you just need to punch something? Oh, how I wish I could do that! There are times I feel like my very being is about to explode into a million pieces shooting out in every direction.
When I get angry about my limitations, it’s not pretty. I have written before about how difficult it is for me to cry. A good cry can really help sometimes. Well, at least it USED to. Now it seems merely to add to my frustrations. The tears, the runny nose, the mess… I can’t do anything about it. Someone has to dry my tears and help me blow my nose. All of this has to happen without any words. Crying makes it impossible for me to produce intelligible speech. Gasping sobs tighten my abdominal muscles to the point where breathing is next to impossible. Which adds even more to cry about.
My purpose in writing this blog is NOT to bring my readers down. I simply want to keep it real. My hope is that others will know that they are not alone in dealing with whatever difficulties have landed on their doorstep. Everyone has something. Life can be hard.
So how does my faith fit into all of this? I firmly believe that God is at my side through every moment. Even those times when I experience meltdowns. I believe He counts every tear. There is not one aspect of my ALS experience that He is not aware of. Did He give me ALS? No. I do not believe that. This life – this world – is not perfect. Things happen. Cancer, heart disease, diabetes, natural disasters, wars, cruelty…
It’s like this: Back when our girls were small, occasionally one would get sick or hurt. I could be right beside her and she could trip and fall, scraping a knee or elbow. Did I cause her pain? Of course not. I love my children with all my heart. When they hurt, I hurt. I cleaned their ow-ies, kissed the boo-boos, and dried the tears. No matter what, they knew I loved them. That fact never changed. It’s the same with God.
God loves us even if we don’t love Him. He loves us so much, in fact, that He gave His Son for our redemption. He is faithful even when we are not.
So, did God give me ALS? No. But He gave me a loving, supportive family. He gave me the gift of beautiful memories. He opens my eyes and ears to appreciate the beauty of creation. He brings people into my life who bless and encourage me. And He reminds me of the many tools at my disposal to help me through this journey.
One of the tools I use to help me stay somewhat sane in this crazy world of ALS is music. Music has the power to alter my mental state – to lift me up out of the pits. Recently I have been listening to John Rutter’s “Requiem.” Years ago, we sang this work in choir at our former church. The final movement, entitled “Lux Aeterna” (light everlasting), is like a fragrant soothing salve on my hurting spirit. This video has been getting lots of visits from me lately.
If you are interested in hearing the complete work, it can be found here.
Of course, the other source of solace is the Bible. In my devotional yesterday I found this:
Surely God is my salvation;
I will trust and not be afraid.
The Lord, the Lord himself, is my strength and my defense;
he has become my salvation.
In John 16, verse 33, Jesus says, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” This week as we approach Easter – as I contemplate all that Jesus endured in His last week of His earthly life – my own troubles seem petty.
One day at a time, right? Just keep trusting… one day at a time.