GM FYI Blog

By Sue Rehmus

I am grateful to make my living working as a communications manager for General Motors. In my current assignment, I am responsible for all internal communication for the employees in our 25 warehouses across the United States and the public relations efforts for GM’s aftermarket brand ACDelco. My position enables me to do what I consider to be my life’s work (outside of my daily job): communicating with families all over the country who must cope with the chronic illness of Multiple Sclerosis (MS).

This chronic neuro-muscular disease is so complicated to understand and deal with because its symptoms and progression are very different for each individual. There’s no way to predict which symptoms a person will experience at any given time or in any given combination or how severe the symptom experience will be.

CHUMS — Children’s Hope for Understanding Multiple Sclerosis — is a non-profit organization I started in 1993 to help children whose lives are affected by MS better understand the disease and cope more effectively with it as a component of their lives.

At 22, I founded CHUMS and dedicated it to the memory of my father, Phil Rehmus, who, just three months prior to the creation of CHUMS, died after a 27-year battle with the disease. He was 50.

I was only 7 years old when my mom told my older brother and me that dad had MS. She told us that he had a disease called multiple sclerosis and that it would break down his nerves and muscles, eventually making it difficult for him to do some things. That’s about all the explanation she could give us — she was still trying to figure it all out for herself.

By the time I was 13, dad could no longer walk and was having great difficulty with basic motor coordination with his arms and hands. And by my sophomore year of high school, he was confined to a hospital bed and could no longer feed, groom or relieve himself and had lost the ability to speak.

We cared for dad at home as long as possible. Two weeks after I started my freshman year in college, dad was accepted into a nursing home. At 46, he had the distinction of being the youngest patient ever admitted to that facility.

Growing up and having to watch my dad’s condition deteriorate, I needed an organization like CHUMS. But there were no age-appropriate educational or support programs for children who were affected by this disease.

I was full of anger and resentment toward my father. I was embarrassed of him. I was disgusted by him. I thought he gave up fighting this disease. It never occurred to me it was beyond his control. I felt isolated, uncertain, and afraid. We never talked about the disease in my family and it’s just not the sort of conversation in which teenagers engage.

During dad’s time in the nursing home, I grew into an adult. I came to realize the amazing man — the amazing father — my dad was. I was fortunate to recognize this with enough time to tell him, change my behavior and mend our once-severely broken relationship before he died.

Upon his death, I knew I had an obligation to do everything I could to prevent other children from growing up with the same bitterness toward a parent simply because they didn’t have an understanding of MS or a support system to help them more effectively cope with it.

Now, CHUMS is the only multiple sclerosis-based non-profit organization in the United States that focuses specifically on supporting a child’s need to understand the disease.

CHUMS teaches children about MS with age-appropriate, fun, engaging activities. They learn how MS attacks the central nervous system not through lectures but through games, creative demonstrations and simulations in which they experience common MS symptoms. And CHUMS provides adults with simple, practical ways to talk with their kids, co-workers, friends and extended family about the disease.

On the weekends, I voluntarily partner with the Multiple Sclerosis Association of America (MSAA) and the National Multiple Sclerosis Society (NMSS) to conduct CHUMS conferences for children all over the country. And I’ve most recently established a voluntary consultative partnership with the Heuga Center, a non-profit dedicated to improving the lives of people with MS through educational and wellness programs and ongoing research, as well as Direct Health Media, a non-profit dedicated to producing video/DVD, multimedia and web applications used for patient and consumer health education.

To be a communication professional requires exemplary learning agility and adaptability skills. You must be able to learn a variety of things very quickly and be able to adapt your style to the communication style of your various audiences, including hourly and salaried employees, executives, governmental/political leaders, community activists/advocates, trade and consumer media staff, etc…

My communication work within GM has enhanced these skills for me and are easily translated into the compassion and empathy I have for my work with the MS community.

I accept no compensation for any of my MS-related work or speaking engagements. CHUMS is self-funded and self-operated. It’s not how I make my living, but I do consider it my life’s work. And I’m grateful to GM for enabling me to do it.