Now and then, when I’m in a fanciful mood, I like to think about what I would do if God suddenly gave me the cure. And I’m talking the “Get up and walk, breathe and eat” cure, which would be a piece o’ cake for God. What would I do first? That’s easy! I would hug and kiss my husband and son. Then it’s a toss-up about whether I would dig my hands in the garden dirt, mow the lawn, trim the hedges or just dig me up some dandelions (or those damn violets that have invaded everything!). Yes, I have truly missed all of those things that much!
Seriously, I have given a lot of thought to what I would do if God gave me another chance. You see, He has taught me some valuable lessons in the 20 years and 8 or so months since my diagnosis. I would no longer be able to live just for myself. As long as there was strength in my body, I would be compelled to act on those lessons.
After getting to know my family again, not to mention cleaning my house top to bottom, finding out what’s in the closets and drawers again, GETTING RID OF STUFF, digging up every violet I can find, setting the yard to rights, baking bread for my family, making cakes from scratch for my family, making my mother’s meatloaf for my family, setting up an art studio in the house and doing a lot of finger paintings just so I can TOUCH THE PAINT, curling up on the chairs and the couch and the bed and the hammock and the grass and reading a real book, learning how to use a cell phone and tv remote and buying some clothes (oops, maybe I should do that FIRST!), I would put my hard-won knowledge to work.
We live in an older neighborhood, so there is a good mix of people who have been here a long time and the younger set moving in. It’s hard to believe we’ve been here over 25 years ourselves. By word of mouth, I would find out if there was someone who lived alone and could use some neighborly help. Some people need more help than others, depending on how ambulatory they are. Obviously, I’m not talking about someone who is in danger living on their own. I would love to do things like mow the lawn and maintain the yard, and if I saw things getting out of hand inside, I would offer to run the vacuum cleaner, take out trash, sweep and mop the floor, wash the dishes, do a load of laundry, clean the bathroom, to name just a few of the simple, helpful possibilities. These are easy tasks for an able-bodied person, but could be exhausting for an elderly one.
If they’re able to go out and about, I could take them grocery shopping with me. It’s amazing how actually leaving your home makes you feel more connected to the world. I know! We’ve been having constant van problems and I never like to go out in the winter cold. Still, my trip to the speech therapist yesterday, which felt like a real adventure, was my first sojourn out of the neighborhood since last July. That’s why I’d be more than happy to take my neighbor out now and then, if they couldn’t or didn’t want to drive. Surprisingly, I haven’t felt that cut off from the world, because I’m active on Facebook. But here’s the truth … If social media did not exist, I would probably be very lonely. That’s just the reality of living a long time. When the emergency is over, people have their own families and problems that must take precedence again. I accept that. I also realize that we’ve become a gadget-driven society and very few people feel the need to “pay a call” and communicate in person.
I’ve learned a thing or two about the behavior of people I find relaxing to be around, and I’d like to try to be like that with others, too. No high drama! You know, people who ask questions so SERIOUSLY and even casual questions can take on another meaning, like … “How are you?” (Translation: “How long did they give you?”) “Are you feeling alright?” (Translation: “Should I call an ambulance?!”) “Are you breathing? (Translation: “ARE YOU BREATHING?!”) … Lighten up, people! Visits should be an opportunity for the person to forget about their health problems … I have always appreciated people who are cheerful, but I have found that it can be exhausting to be around people who are really, really, really cheerful, because I try to keep up with them in good cheer! I used to laugh a lot before ALS, especially when I worked in a nursing home one summer and Christmas break in college. I thought it would be upbeat for the patients. Now I realize it was probably just irritating. I would try to be friendly, neighborly, newsy and if something was truly funny, by golly, I would laugh! I have missed being able to laugh at something really hilarious.
Lord, I know I can’t change the world, but I can make a real difference in the life of an individual by spending an hour or two a week to help them feel connected, cared for and safe. I have been blessed with my family and my nurses, who have given that security to me. I would be true to my quest, dear Lord, if I just had … one … more … chance.
To learn more about Erin Brady Worsham and her journey with ALS, read her story that is currently running as part of MDA's ALS Awareness Month campaign.