A Deeper Level of Understanding

By Heather Burns, MSW, LMSW, ALS Association Care Services Team Manager

I thought I had a good grasp of the psychological impact of ALS, until I temporarily lost the use of my right hand. I am a south paw, but the inability to use both hands in the way I am accustomed to using them in my almost 31 years of life has been proven to be quite the learning experience.

After returning home from the emergency room, to be greeted by a sink full of dishes, is when the reality of my temporary disability set in. I always strive to have the dishes done before I go to bed. It’s a personal goal. I stood there, hunched over the sink in tears, that I wasn’t able to accomplish this task. My significant other came in and assured me he’d take care of them. But that didn’t make me feel better as I slouched off to bed.
The next morning, attempting to diaper and dress my almost one-year-old and two-year- old; that was a sight to see…to say the least. I had help arrive shortly after they woke up & thank goodness for that!

I began plugging away on my significantly rescheduled work day when it hit me…how was I going to drive??? Driving has served as an escape for me always, a therapeutic intervention if you will. I’d blast music and just drive…except I couldn’t. I then began the scramble of rearranging my calendar. The stress of that task alone resulted in some pretty panicked calls to my mom and fiancé.

“I thought I had a good grasp of the psychological impact of ALS, until I
temporarily lost the use of my right hand.”

Throughout the day, during the numerous activities that I do on a regular basis, and having those activities be completed half-a*%!@ (pardon the language), if at all, made me do some deep personal reflection. My 5-year anniversary with The Chapter is in July. I felt like as I have grown professionally and educationally & as I worked with people with ALS, that I did a decent job empathizing with their situation. It wasn’t until I TEMPORARILY lost the ability to use my hand that I empathized with those I worked with in a whole different way.

I have no idea what it’s like to receive that devastating diagnosis, nor will I ever pretend to. My injury will heal and life will resume as normal for my family. But I feel compelled to say this…for those of you reading that are living with ALS, from the very bottom of my heart and soul, please know I will do all i can to compassionately support you and your family during your journey with this disease. For everyone else, my situation is a relatable one. It could happen to anyone. The biggest takeaway I hope you get from this is that the bottom of life can fall out any moment and you’re world can be flipped upside down. Imagine living in that upside down way of life for the rest of your days….If I had to guess, it’s similar to a life affected by ALS.

Heather Burns began working with the St. Louis Regional Chapter as a care services coordinator in 2013, and is currently the Chapter’s care services team manager. She assists families by educating them on ALS and symptom management, helping to reduce their financial burden by presenting community resources, and offering emotional support for both patients and caregivers.  She received her Masters of Social Work in 2017 from the University of Missouri, St. Louis and her LMSW the same year.

One thought on “A Deeper Level of Understanding”

  1. One of the many reasons I fell in love with Don over and over again during his journey with ALS was how he continually dealt with the loss of things that had seemed insurmountable, and he did it with a smile and a wonderful attitude. ALS loses a bit of its sting when you don’t allow it to beat you!


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