An ALS Wife’s Perspective

More than 13 years ago, when I said, “I do,” did I really know what I was in for? Or for that matter, do any of us? In my concept of marriage, it doesn’t matter.

The biggest unexpected event in our marriage was Steven’s diagnosis with ALS in 2001. Many things have changed for us since then, but Steven is still the same person; actually, he is an even deeper, stronger person now than he was before he had ALS.

Losses and Gains

Initially, my greatest sense of loss was for our son, Christopher, then not quite 3 years old. I felt incredibly sad for him that he would have such a hard life without his father, and would miss so much of his father’s guidance. I’m still conflicted about whether to spend time with and take care of Steven or of Christopher. Steven says I should pick Christopher over him, but it isn’t always that easy.

Given our situation, I think Christopher will grow up to be a more dynamic, loving, caring, well-rounded person.

Now I don’t fight ALS, but I’ve learned to accept and embrace it. ALS is only a part of who we are, and it has been a gift of perspective for me.

Learning and Teaching

When Steven was working, we were fortunate enough to have one of our dream cars, a Mercedes-Benz. After our diagnosis and a financial reevaluation, we decided to sell the car.

A man looking to buy the car asked why we were selling it. We told him that Steven had ALS and gave a brief explanation.

When Steven left the room the man leaned over and whispered, “Is it contagious?” My answer was, “Of course not!” But at that point I knew I had my work cut out for me.

If this seemingly well-to-do and intelligent man had no idea whether ALS was contagious, then what did everyone else think about it? This awareness of the public’s lack of knowledge was one of the main driving forces for my MDA involvement.

Blessings and Time

I feel extremely blessed to live the life I’m living. The quality of our time together is well worth whatever we may lose in number of years.

Recently two of my friends from high school have gone through ugly divorces. I told them I’d rather be going through life with ALS than the terrible situations they’re dealing with.

I’m living with my soulmate, and, because of my faith, I know that our short time on this planet is only the tip of what is to come later. Steven and I have healthier communication. Our mental attitude toward each other is one of total respect for what the other feels and experiences.

We’re both adapting to physical and mental challenges every day. I find that when I try to replace Steven’s physical strength, it only leads to frustration, so I find people to help or I hire out as much as possible.

Mentally I’m good. I have no reason to be depressed, because I get to spend every day with the two most wonderful people I could imagine spending time with — Steven and Christopher.

My biggest challenge is not planning too far into the future. We only have today, and why not make it the best we can? I tell my friends and family that there will be a day when I’m sad, but not today, not while Steven is still around.

To my wonderful husband: You are my inspiration and my breath. I love to see you with our son and how motivating you are to others with or without ALS. This is truly your life’s calling. I’m forever indebted to you for making me a better person.

It will be a privilege and an honor to take care of you until the bitter end or until a treatment or cure is found. I feel this is what God put me on this earth to do. I’ll bet many other spouses feel the same!