Living with ALS is hard. No one who has been around someone with the disease will deny that. There is nothing easy about it. But we too often talk about big things. The big things, like not being able to walk. Like not being able to move your arms. Like not being able to speak. I’m not here to argue that big things aren’t complicated. But we plan for these significant, overwhelming things. We order wheelchairs before we need them. We remodel houses and bathrooms to accommodate the needs of our disability and the medical assistive devices we need. We use a voice bank to speak in our voices when our physical bodies can no longer produce a voice.
But in living with ALS day in and day out, I submit it’s the little things that make life most difficult. The little things, by definition, are little. They are not significant life changes. Except they are. In a conversation, a person mentioned they had recently been going through clothes to make more room. Getting rid of clothes that no longer fit or are no longer able to be worn. It is something that many of us do every single day. Maybe you do it in spring and fall or once a year. We clean the closet by sorting clothes, routine, an everyday chore. But when it’s because of ALS and a person is no longer able to get out of bed, and so business suits become entirely unnecessary, it’s different. When walking unassisted is no longer possible, high heels become a thing of the past. High heels, once the very definition of who I am as a woman, are traded in for flat shoes that accommodate my AFO. It’s a big deal.
It’s the little things that often hit the hardest, like the simple act of putting ice in my drink. It’s become impossible because the ice maker won’t respond to the amount of force I have to apply. It’s not a big deal to ask someone for help. Except when I must ask someone for everything I need, it’s a big deal. It’s not a big deal to wait a minute for someone to respond to my request for help, except on the days and in the moment when I feel like I should be the top priority.
I have been blessed with an extraordinarily wonderful care partner! Howard is patient, caring, attentive, and human. We recently spent time with a granddaughter, her husband, and their two-and-a-half-year-old daughter, our great-granddaughter. Watching them parent as gently as any two parents I have ever seen was a blessing. Having her daddy acknowledge that she was angry and frustrated and had every right to feel that way was heartwarming! He also said she needed to use her skills to calm down. Listening to her tell her daddy, “She needed a minute,” blessed my soul!
Because, honey, there are days that I need a minute (maybe more than a minute!)
At the end of the day, it takes love, laughter, prayer, and “a minute” to get through a day living with ALS. Big things will still be planned, but little things do not need to become significant. Remember, a little laughter will go a long way.
“Then our mouth was filled with laughter and our tongue with joyful shouting; Then they said, among the nations, ‘the Lord has done great things for them.’ The Lord has done great things for us; We are glad. Psalms 126. 2,3
