The Beginning:

I was seven years old when my mom told my older brother and I about Dad's MS.

"Kids," she said with a serious tone, "I need to tell you something about Daddy." My brother and I stopped playing our game and listened attentively.

"Daddy has a disease called multiple sclerosis. It breaks down his nerves and muscles and will make it difficult for him to do some things," she said.

That was about all the explanation Mom was able to give us before my dad, who was a band teacher at the local high school, pulled in the driveway from his latest practice. Mom saw him pull in and started to wipe my tears away. Then she said, "Now Susie, if Daddy asks why you've been crying, you just tell him the puck (from the game my brother and I were playing) flew up and hit you in the face."

Right then and there I knew this was something really bad. I knew we weren't supposed to talk about it, and probably weren't even supposed to know about it.

Progression:

Dad's MS progressed on a regular basis. Although I can't really remember the years, I can remember the progression of the disease by the equipment Dad used to try and help him move.

First it was the walls to balance himself. Then it was a pair of arm crutches that had these cuff-like things that fit around his forearms. Not too long after those, by the time I was 10, Dad was using a walker to help him maintain balance. Then, I remember my dad falling while using the walker and being so frustrated that he would throw the walker across the living room floor.

The walker was replaced by an Amigo that at first, he just used outside. (An Amigo is a kind of motorized scooter - not like a wheelchair, it has a floorboard and handlebars and the seat could swivel.)

When I was in eighth grade, we remodeled the house to make some accommodations for Dad like ramps to the front and back doors. We also transformed our little pantry that was between the kitchen and the master bedroom into a handicapped bathroom for Dad.

In ninth grade I remember going to some physical therapy rehab classes with Mom and Dad to learn how to "transfer" my dad from his Amigo chair to a bed or chair and vice-versa. That, perhaps, was the peak of my extreme anger toward my dad. I HATED that therapy class. I was all of 100 pounds in ninth grade and here I was trying to lift my father and move him from place to place. I can't remember how many times I dropped him, but I know it was a lot. He was screaming at me and I screamed right back at him.

My sophomore year in high school, we moved the double bed that was in my parent's room into my brother's room and my brother's single bed into my room. So my room had two single beds. We did this to make room for the hospital bed my dad now needed. That meant, at sixteen years old, my mother was also my roommate in the most literal sense.

My graduation picture with my father had to be taken at his bedside. By this time, he had lost nearly every physical capability including speech.

And finally, two weeks after I started my freshman year in college, my dad was accepted into the Luther Manor Nursing home in Saginaw, Michigan. At 46 years old, he had the distinction of being the youngest patient ever admitted to the nursing home.

New Beginning:

Everybody at the nursing home loved my dad. All of the nurses fought over who would get to take care of him. He had a bunch of friends that he'd play bingo with every week (with the help of a couple young volunteers).

His smile just won the hearts of everybody there - literally. Each Valentine's Day at the nursing home, all the residents and staff voted for a "King and Queen of Hearts." My dad was voted King.

Dad lived for three and half years at the nursing home before he died on April 4, 1993. That day was Palm Sunday.

My relationship changed dramatically during his time in the nursing home. Many people think that by placing a loved one in a nursing home it tears a family apart. Me and my family would strongly disagree with that. In fact, we believe it brought us all together - closer than we'd ever been before.

Growing up, 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 really occured to me that it was beyond his control.

Growing up I felt isolated, uncertain, and afraid. We never talked about the disease in my family and it's just not the sort of conversation teenagers engage in.

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 apologized to him for all of the hurtful things I had done and said to him in past. And I told him that I loved him.

Although he had lost the ability to speak many years before, I knew from his smile and his tears that he felt the same way.

CHUMS is Born:

Three months after my dad died, my dear friend Geoffrey Hoffman listened to my ideas about starting a non-profit organization for other children who were growing up with a parent that had MS.

Together we came up with the name CHUMS - Children's Hope for Understanding Multiple Sclerosis and Geoff created the organization's logo.

That was the beginning of my crusade to prevent other kids from growing up unaware of this disease - especially if they're living with it!

Now, CHUMS is a national non-profit organization (501(c)3) and conducts conferences throughout the country.

If you'd like information on how to bring CHUMS to your area, just send me an email.

 

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©Copyright, Children's Hope for Understanding Multiple Sclerosis, 2002