Part 3: When Irony Roars

The irony of my ALS diagnosis was staggering. I couldn’t help but think of the cruel twist of fate my ALS would have on my husband.

Right now I had a different ~ kettle of fish ~ needing my attention. Understandably, people were forever asking me if the doctors knew yet what was causing my imbalance. Now that I was given the irrefutable diagnosis of ALS, Lou Gehrig’s Disease, it would be a cold day in Wheaton, before I was going to let the world in on my future.

So what do I say ~ when people ask?

Most people had never even heard of Amyotrophic Lateral Sclerosis and that was fine with me. I didn’t want them Googling it and feeling sorry for me. This was before the summer of 2014, when the Ice Bucket Challenge took the world by storm and took away much of the burden of explaining what you are dealing with.

The easiest thing would be to continue telling people what I’ve been telling them for the past three, long, years: the doctors still don’t know.

My husband’s mother Genevieve had a debilitating stroke in her 70’s leaving her permanently in a wheelchair, one year after her husband, Ted retired. He would be her sole care-giver for the next three years, until he passed. My lovely, inside and out mother-in-law sat in that wheelchair 10 long years. My future will require “wheelchair time” too, only I’m 49.

Do you see the irony here? My husband and I will be a repeat of his parents. Our lives would mirror his parent’s lives, he will be his dad and I will be his mom. I have a debilitating disease and my husband will be my care-giver.

Well, guess what ~ I don’t want a care-giver ~ how’s that for starters? I don’t want to have to ask for help, I was made to be the help-ER for heaven’s sake, not the help-EE.Why can’t I have something that doesn’t render me so desperately help-LESS?

Why can’t I be like Bette Davis, in the 1939 melodrama Dark Victory? Bette’s character relocates to the Vermont countryside after receiving her fatal diagnosis, and she exits quietly into the sunset.

There is nothing ~ graceful ~ or ~ private ~ about ALS.

ALS is not just a diagnosis, it’s a lifestyle. Anyone with eyes and ears can tell something is woefully wrong with you. ALS is the teacher you never wanted. She’s brutal. She strips away the ordinary; the casual walk across the room, opening the door for your 80 year old mother, telling the waiter you’ll have the curly fries instead of the side salad. Even getting dressed can sometimes feel like you’ve just finished Riverdance.

Then God showed me I could be ~ grace ~ filled.

God is good like that. Grace~filled has a beauty all of its own. He would give me the grace I needed to navigate my way thru this quagmire of crazy. I had to let go of what I wanted and trust in God’s goodness and grace, completely.

What I could not let go of was why my family had to be dragged into this? Why can’t it just be me, God? My husband saw the toll it took on his father, taking care of his mother for those three long years. Now he’s looking at the same future as his father’s.

You gave me a servant’s heart God, remember? You gave me a servant’s heart and I loved it, thank you, 1,000 times thank you! Remember that old adage ’Tis better to give than receive’ 100% it is. And now you’re breaking and taking away my servant’s heart?

It was going to take from here to eternity for me to come around to this ~ radical way of living ~ God was asking of me. He didn’t really ask me though, He put it out there and He let me decide for myself, how I would play out this new chapter of mine. It didn’t have to define me, but somehow I had to make peace with my ALS-self.

I would ~ walk closer with God ~ He would lead the way so I didn’t need to figure everything out on my own. He’s good like that.

I would ~ learn a new kind of grateful ~ no more taking movement and my independence for granted.

I would ~ learn asking for help ~ is not always about me. I didn’t have to like it, (still don’t) but it has shown me some of the most beautiful and loving sides of people, including strangers who then became friends, that I would have otherwise missed. I love their servant’s hearts.

ALS needed to become a bigger, more open part of my life, if the two of us were ever going to get along.

In time I would ~ do my homework ~ with a whole new perspective. Instead of turning away from all things ALS, I would get involved and see where it leads.

I’m grateful I was the one diagnosed with ALS and not not a family member ~  thank you God.

There are people who have never had one good day, I’ve had more than my share ~ thank you God.

There are families that have Inherited Familial ALS, mine doesn’t ~ thank you God.

I have the best family, friends and neighbors, I want for nothing ~ thank you God.

My progression has been slow ~ thank you God.

ALS has a surprisingly good sense of humor and we laugh a lot ~ thank you God.

My deep love and abiding faith in You has never been a struggle for me ~ thank you God.

Looking back, there were no coincidences. I now saw how God had been preparing us, my husband, my daughters, myself, for our own good/hard story.

My husband’s parents, Genevieve and Ted, when they should have been enjoying their golden years, were stopped dead in their tracks with Gen’s stroke. They moved half way across the country, from Oakland, California to Naperville, Illinois, to be near their children because they needed their help.

Their story became our stories. God could not have given us two finer examples than Genevieve and Ted on how to live a life they never would have chosen, graciously.

Now that my diagnosis was confirmed, we shifted our focus to searching for new therapies, new treatments, off label medications, anything new we could get our hands on that offered hope.

Slowly life settled into a new kind of normal in the years that followed with physical therapy and exercising taking center stage. I was swimming twice a week with a physical therapist and working out in our basement which now resembled a gym.

Whatever it took, my husband was 100% behind anything that helped me stay strong and kept me moving. I was still driving, still had loads of energy, still keeping my diagnosis on a need to know basis.

Yes, the irony here is outrageous but God’s loving hands in my life is more so. I may not understand the road, but I trust the One who walks it with me.