In the ALS community we refer to a person with als as PALS, and the caregiver of the person with als as CALS. Most of the time people in the public are focused on the pals, hearing their story and the courageous fight. While the pals do have a tough battle, I think the immediate family who have become caregivers have it the hardest.
Take my family for example, my parents are in their 60s expected to retire and relax after 40+ years of work. Mom didn’t sign up to be a primary caregiver for her 39 year old son. Dad didn’t sign up to watch his eldest child become more paralyzed day by day, knowing there is not a thing he could do. Same with my brothers and sister, I mean I can’t imagine how helpless they feel watching my physical decline. And my son Ashton, my nephews and niece Billy, Casey and Allie. What do they think? I’ve tried to show them this is what it means to never give up, never lose hope. And my lifelong friends, it must be so hard to see your friend in this physical shape. A lot of them will and have turned a blind eye, and I really don’t blame them. This is a horrible thing to be involved in.
As the pals, yes life is hard and full of adversity but my adversity is no more difficult than my family and friends. ALS hasn’t changed just my life, it’s changed a lot of people’s lives around me. As long as I can see their smiling faces, I will never quit in the face of adversity.
My family’s love is beautiful, I am fortunate to feel it every day.
CALS are the real heroes, they inspire me.