My body is getting weaker and my muscles twitch, which feels like I have twinkling lights inside my whole body. As I learn how to live with this disease, these are some of the things I’ve realized:
- I can’t run but I can still walk.
- My speech is slow and I slur my words but I have patient people to listen to me.
- My arms are weak but I can still hug.
- I can no longer drive but I have great chauffeurs.
- I can’t ride a bike but I love to see others get out and do it.
- My handwriting is getting shaky but I can still type.
- My right hand is starting to curl but I can still hold hands.
- I can’t dry my hair but I have Mark to help me.
- I can’t shave my legs perfectly anymore but I can still shave them if I sit down in the shower.
- I can’t cook but I didn’t like to anyway.
- I can’t clean the bathroom very well but I can still do laundry which is my favorite household chore to do.
- I still cry a lot but I am getting stronger mentally, some days.
Every time I get really sad or feel sorry for myself, I cry for a little while, but it doesn’t take me long to find another reason to smile.
My beautiful friend Marcy Hunter loves the outdoors and knows the trails at Snug Harbor like they’re her own backyard. We have taken many morning hikes in the woods together while she shared her favorite trails, hiding places, trees, plants and animals with me. Two of my favorite places are the Eagle’s Nest and The Bench.
Ever since my first trip to The Bench with Marcy, I have taken so many family members and friends to see its beauty. The Bench is located on the top of a dune, but it’s great because there’s an easy walking trail through the woods to the top. At the edge of the dune is a nice bench that faces Lake Michigan.
To commemorate our trips to The Bench, we set the camera timer, prop it up on The Bench and everybody crouches down for a photo with Lake Michigan in the background.
One day I thought it would be fun to invite some friends to hike to The Bench with Mark and I and a bottle of wine. We mentioned the idea to some of our fellow hikers and wine drinkers, John and Marty Gerencer and they were game to go with us.
The second time I ventured to The Bench with a bottle of wine was during a visit from some of my high school friends. My friends, Nancy Moody, Jill Verhulst and Kristine Klukos were in town for an overnight slumber party at my house. I surprised them with a walk to The Bench and we shared some great wine and great conversation on a beautiful fall day in the woods.
The third visit to the bench with wine was with nine fun friends, but this time we brought four bottles of wine and drank them all. It was getting dark when we finally left The Bench but we all made it safely down the steep dune before dark. This time our group consisted of Dave and Jan Harris, Dan and Kelly Harris, John and Marty Gerencer, Colleen Paquin, and Mark and I.
I love walks in the woods with my family and friends (with or without wine). I only hope we can come up with a device to allow me to continue our hikes through the trails after I am unable to walk. Mark said he would find a way even if he had to carry me.
Cindy Whiteman (pictured above) is one of my best friends and she’s also my birthday buddy.
Cindy and I both turned 57 today, we were both born at Hackley Hospital and we both spent most of our lives in Muskegon, but we didn’t meet until we were in our 40s when Cindy and her husband Paul moved across the street from us on Robinhood Drive.
Cindy is the type of person everyone wants to be around because she is so nice and so sincere. She’s also a great listener and full of compassion. Even though she has a tender heart, she’s also a strong woman and I learn from her every time we see each other. Cindy is always game to try new things and is so much fun, especially when she giggles. Although, to our knowledge, our moms never met each other, we’re both certain that if they did they’d have become great friends.
A few years ago, Cindy’s mom suffered a stroke and ended up in a nursing home for rehabilitation. Joyce was no longer able to speak or walk very well and wasn’t able to do everyday tasks on her own. Cindy and her family were determined to bring Joyce home to be reunited with their dad who had just turned 90. When Cindy first told me about her plan, I thought it would be so difficult for everyone involved. In fact, at first I thought she was taking on too much, but I never told her that. Cindy’s family worked hard to turn Joyce and Tony’s house into a handicap accessible home. She and her family set up a schedule to have their cousin Darlene come in to help care for and organize her parents’ lives. They also hired help and scheduled meals for her parents so they could be together. Cindy did all of this while working 60 hours a week at her job with Verizon. Joyce has been reunited with Tony for almost two years now and the family is making it work. Cindy’s amazing love for her parents and her willingness to see past Joyce’s disability is simply beautiful.
This year Cindy is working out of town so we won’t be celebrating our birthdays together. Pictured above are the friends we usually celebrate all of our birthdays with and have for many years. Our birthday group is Paul and Cindy Whiteman, Terry and Ellen Brennan, and Dick and Patti Winsemius.
Cindy is my amazing birthday buddy and I love her so much.
Happy birthday, Cindy!
On Friday night we went to Parties in the Park in Hackley Park to meet up with family and friends. Toward the end of the evening I decided to sit on the ground to join the circle of my kids, nieces and nephews. I lowered my knees successfully to the ground but as I put my hands on the ground, my arms gave out and planted my face into the ground right into the middle of the circle, breaking my glasses and scraping my face. As I lay with my head on the ground, I could not pick my body up because my arms were too weak. I was a little surprised by my weakness. How could I not pick my body up from the ground? I know I have always had weak and skinny arms but how come I didn’t know I could no longer pick myself up?
With my family circled around me, it wasn’t long before they realized I wasn’t getting up. Maybe they thought I was too embarrassed, which I was a little. Several people picked me up to see that my glasses were mangled and I had a big cut on my face and then I began to cry. I really wasn’t in pain but I would have preferred that my loved ones didn’t know how weak I had gotten. After a few minutes of composing myself, we all started to laugh.
This is my new life and I need to learn to laugh at myself more often.