Personal essay written by Maycee Wilkie, Live Like Lou’s Communications and Marketing Specialist
When I was 11 years old, I became the primary caregiver for my father, Mark. Two years later, he was finally diagnosed with ALS. During those years, he progressed rapidly. Once a Division 1 football player who taught himself how to build houses, no longer able to move his fingers. His body had fallen out of his control because of three letters, ALS.
We can visibly see what Lou Gehrig’s disease does to the bodies and lives of those living with the disease but the impact it has on the caregiver isn’t always visible and can often go unnoticed. So if you are a caregiver reading this, from one caregiver to another, you are seen, loved, and heard.
For those who haven’t experienced ALS caregiving, I want to paint a picture of what it’s like not only to care for someone you love with ALS but to do so as a child.
It was a typical school day, but I purposely missed the bus because I was filled with the anxiety of my dad staying home alone with ALS. At school my thoughts were,"What if he fell? What if he choked on his saliva? He can't walk anymore so he won't eat until 5:00 p.m., when I get home from school."
I watched as the bus passed by to drop the kids off. Staring out the window, I longed for the normal, carefree life of a child, but I had to be an adult. It felt as if I was stuck behind the window, in a dark room (similar to a jail cell), and I would never have the opportunity to step out into the sunshine. That is what being impacted by ALS feels like: being stuck as if you will never be unstuck. Stuck without my dad to play basketball with me anymore and eventually….stuck without my dad here on this earth.
When I was a freshman in college, I created a campaign for ALS Awareness Month called “On Your Mark.” It encouraged people to move their bodies in gratitude for the physical abilities that ALS takes away and to help raise awareness of the disease. For all 31 days of May, I walked a mile each day, inviting others to join me or simply to find their own way to move and each day, to reflect on something they were grateful for. The following year, I joined Lou’s Crew through Live Like Lou, adding a fundraising element to my campaign. Lou’s Crew empowers anyone to take on an athletic activity they love and raise money for ALS families and research, turning movement into meaningful support.
When I was a caregiver, I wish I had the support to move my body more, even it was just for ten minutes. This is why I want to encourage any of you who have the opportunity to join Lou’s Crew, whether you are a caregiver or you want to honor and support a caregiver for National Family Caregivers Month.
