Impact... Community In Action

They say that victims of earthquakes experience them in slow motion; as the walls come crashing down around them in minutes, time seems to stand still. Sitting with my husband, in the doctor's office, after months of searching for answers, I had a similar experience when the neurologist delivered my diagnosis of amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease. The words hung in the air, as if I had the option to dismiss them, or accept them. I remained calm, almost frozen, as I noticed the tears begin to stream down my husband's face. “Two to five years,” the doctor said, “That's the prognosis for this disease. There's no cure, no effective treatment for what you have, I'm sorry.”

I had heard of Lou Gehrig's disease, but frankly, I knew nothing about it. I was always concerned about Multiple Sclerosis, as it runs in my family, so when my symptoms began to progress, I was almost certain MS would be the conclusive diagnosis. I was prepared for that, not for ALS, not for something worse, not for something fatal. In the days to follow, I remember thinking, why isn't there a cure or at the very least an effective treatment?

Unfortunately, like an earthquake, when we hear about ALS, it only lasts a news cycle and then we lose focus, but the devastation remains.

And then come the aftershocks, as you tell your family and close friends, your boss, co-workers, and eventually the person who cleans your home, cuts your hair, and paints your nails, because you can no longer hide the fact that you're sick.

Each time it becomes more real, more terrifying, and more overwhelming, until you decide to accept it and live your life despite it! Today I am living with – not dying with – ALS.

I don't say this flippantly, like someone in denial and I didn't get here easily, but I did get to a place of hope and optimism because of the people that surround me.

In my twenties, I read a book about family systems; the author used a mobile to illustrate how an event in the life of just one member of the family, will impact every other member of that family system. Try it, watch a mobile moving effortlessly in synchronized harmony, now touch just one of those dangling pieces; and the next thing you see is utter chaos, each piece flying through the air in a different direction. You see, the expectation is that there is always a negative impact; that has not been my experience; that is not my story.

As I sit here in my power wheelchair, feeling the warmth of the afternoon sunlight on my face, I am reminded that spring is coming. Each year, when I think that I just can't take another day of winter's biting cold, spring pops and a daffodil breaks the earth's crust and pushes through. This is one of my favorite things. It's the way I've come to think about living with my disease... Just when I think I can't endure another day, something happens to remind me there are good days still ahead.

Days when I get to share lunch with friends, see musicals at the theater, receive a note of encouragement from a dear friend I haven't seen in 20 years, and recently, I was able to see my beautiful, ten year old daughter sing "You Make My Dreams Come True" on stage, while she literally was making my dreams for her come true. Her joy was my joy!

Since early 2010, I have experienced what it's like to move from an active working mom who exercised daily, enjoyed rollerblading, cycling, cross country skiing and running with her husband and children, to a mom that has learned to use assistive technology in order to help her daughter do her 4th grade math homework because I could no longer speak. That said, if not for my illness, I would not have been home after school with her to spend those precious moments.

What I have learned in the past few years as my body gradually deteriorated is that being sick is not for those weak in spirit. It takes determination, strong faith, and the ability to see the blessings that come along with the pain, to get through it one day, one hour, and sometimes one minute at a time.

Most importantly, I've seen how my illness has impacted those around me. Over the last three years, I have seen co-workers, friends, and neighbors become my hands and feet when mine would no longer serve me. They provided child care, transportation, and meals when we needed them. They packed up our things, and unpacked them again, to move us into a new home when I could no longer climb the stairs of our family’s home. They participated in walkathons, and ran alongside us, as my husband pushed me in a specially designed jogger, to honor a commitment he made to run my first marathon. A special group of neighbors even went door to door to tell our story, and raise awareness and funding for research and patient care.

Just when we thought we had seen blessing after blessing, two former students of my husband's, now in junior high school, organized an annual dodgeball tournament. Recruiting support from local businesses, parents, fellow students, and teachers to help, these young ladies engaged the entire community in our efforts to fight!

They've organized the dodgeball tournament for two years now, and each time I roll into the high school field house, I am overwhelmed by the number of people who participate and attend. There were teams of teachers, parents, high school students, and junior high students, each team dressed to show their unique spirit, each more amusing than the next! Bubble wrapped teachers, moms in tiaras, and students in their brightly colored t-shirts and wild socks, they made me smile and laugh.

Many of them greeted me, or stopped by to ask how I was doing, and reminded me that they keep us in their prayers. One adorable group of tiny elementary school girls, who attend the school my husband works in, walked by the bleachers back and forth, selling wristbands, and stopped by to ask about my new puppy, Sally. Apparently, word got out about my furry Valentine's Day gift! I did not have my Dynavox (communication device) yet, so it was difficult to respond, but I smiled and nodded my head to acknowledge them, and mouthed the words, thank you.

I also had the pleasure of meeting the lovely young ladies who inspired us with their vision for the event, along with their parents, grandparents, and siblings.

One family who participated had recently lost their high school aged son, Michael to brain cancer. Yet mom was at the front table welcoming people as they entered the event, collecting admission, and dad led a team, "The Heavy Hitters". Both greeted me individually, and although there was little spoken dialogue, I sensed a connection of deep understanding in their eyes, a moment of mutual compassion, that won't be erased from my heart. My husband had been one of Michael's teachers, and even in their time of grief, they were present to support us, nothing short of amazing.

This was impact we never saw coming! This was community at it's best, and I am humbled, and filled with gratitude, because no matter how bad it seems, I know we are not alone.

dd