ALS is a nasty lurking shadow and I hate it

Last month our family participated in “The Walk to Defeat ALS.”  I wish we could simply walk this disease away.  Amyotrophic Lateral Sclerosis, or Lou Gherig’s disease, took the life of my mother-in-law and my girls’ Grammie earlier this year.  It also claimed her dad (Mark’s grandpa) several years ago.  When she was diagnosed we realized that Mark’s family carries the very rare but very scary familial form of ALS. 

For me, the walk was one of grief. There were balloons and bands, free ice cream and face painting.  The crowd did smile and cheer.  But, we all knew that each person there watched or is watching their loved one give way to an enemy that, on this side of eternity, cannot be beat.  From watching Janet fade away I can tell you that the disease is beyond painful and claims the body of its victims but not their minds. ALS patients live in fear of choking or suffocating.  It’s in a league of its own.  

Mark’s grandmother, Betty, has buried both her husband and her child as a result of ALS.  Standing with her in the Memorial Booth and seeing the photos of her husband and daughter side by side was almost too much. She has borne great grief. 

And what about my husband and kids?  Lord, have mercy, it’s genetic.  Spare them please.  Please, please, God, do not ask me to walk the road that Betty has.  Please, please don’t take me there.    

The walk to defeat ALS did not leave me feeling victorious.  Trusting in a future cure and crossing my fingers for science to beat the disease doesn’t give me hope.  Trusting in statistics doesn’t put us ahead.  Ignoring it isn’t feasible--every meal I try to find foods that “might delay the onset of ALS” and every plan that Mark and I make for the future causes me to wonder briefly if he will be there for it.  I know it sounds dark, but I’m being honest--ALS is a nasty, lurking shadow and I hate it. 

But here are three truths that I rehearse daily that do give me hope.  Without them I could not breathe.  The first truth is that heaven is real--this is not all there is.  This life is the pre-party and heaven is our real home.  The way to heaven is through forgiveness and grace in Jesus Christ alone.  Because I love Him and He has forgiven me, I’m going there.  Janet’s already there.  Mark’s going there.  My kids are going there.  No matter how painful this life is, it’s only the beginning.  What really matters is the eternity in heaven where there is no pain or crying or ALS.  

The second truth is that God is Sovereign.  He is in charge of every single thing that happens to every single person on this Earth.  Nothing happens without His design or permission.  

And thirdly, He is trustworthy.  He is a good God who will not leave me or forsake me.  I can say with integrity to my kids, “If you have ALS, God will help you,” because it’s true.  I cannot say, “Honey, you probably won’t get it,” or “There will probably be a cure by the time you’re an adult,” or “Shhh, don’t talk about such gloomy things.”  Those responses are made-up fluff designed to make I-don’t-know-who feel better. 

While ALS is indeed a nasty, lurking shadow and I hate it, I can also face the days ahead with peace and joy because heaven is real and I’m going there along with my family, God is in charge of everything, and He’s good and trustworthy. 

“Do not let your hearts be troubled.  Trust in God; trust also in me...I am going to prepare a place for you.” (John 14:1-2)

“So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:18)

“For by him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things were created by him and for him.  He is before all things and in him all things hold together.” (Colossians 1:16-17)

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28

“God has said, ‘Never will I leave you; never will I forsake you.’ So we say with confidence, ‘The Lord is my helper; I will not be afraid.’” (Hebrews 13:5,6)T


The walk starting line

The walk starting line

Grandpa Joe and Janet side by side 

Grandpa Joe and Janet side by side 

The girls signing the memory book.  Their messages said, "I miss you, Grammie.  I love you." 

The girls signing the memory book.  Their messages said, "I miss you, Grammie.  I love you."