“Be the change that you wish to see in the world.”
I feel the need to explain my blog post from yesterday because Communion and swear words don’t really go together.
On Monday night I was mad at Mark and my anger drifted into Tuesday morning until we resolved our issue. It’s hard to stay mad at a guy that feeds me, bathes me, wipes my nose and my butt. On the other hand it’s so frustrating for me to be upset with someone and not be able to properly express myself because I can’t use my hands for expression and sometimes my words don’t come out clear enough to be understood which can frustrate me even more.
By the time the afternoon rolled around Mark and I were back to normal and I had finished my bitchy blog post and posted it to the Internet. Our friend from church, Barb Perri, arrived to give Mark and I Communion and pray with us. We had a really nice visit with Barb and after she left I took a nap before our dinner guests, Jill and Eric, arrived. A couple of hours later we received a text from my friend Jill saying she would be happy to drop dinner off if I was having a bad day. I’m thinking Jill must have read my afternoon post. Mark texted her back saying we would rather see them and they brought a wonderful lasagna dinner over with Jill’s homemade noodles in it. We had an uplifting and fun with our afternoon and evening friends.
As the evening came to an end I thought about how awful I felt in the morning and how grateful I felt at the end of the day.
I absolutely hate this fucking disease! Today I’m speaking for myself and maybe some other people that have this dreadful disease. Today my Rosemary-colored glasses are nowhere to be found.
This disease sucks the life right out of our bodies at a very slow pace and only the tough or the lucky ones weather the storm, but only temporarily. It strips us of the use of our arms, legs and neck muscles and then, as if that’s not enough, it takes our voices and our ability to swallow away.
Ironically, ALS doesn’t mess with our minds so we are fully aware of everything that’s happening to us. But then again being fully aware can be one of my worst enemies so I try to calm it with my own problem-solving tactics and most of the time they work but today they aren’t.
Stay tuned for tomorrow because I should have a much happier post because I am one of the lucky ones.
Walking in the woods in the fall is so much fun especially if you’re surrounded by people you love. Last weekend while Chad and Devin were visiting from Dallas we were able to fit in a family hike by Lost Lake. It was a beautiful day for a hike with the trees starting to turn from green to bright orange, yellow and red.
Bryan pushed me in the Chairiot most of the way but when we were on the cross country ski trail we came to a hill and Mark offered to relieve Bryan for a while. As we started up the hill Chad thought he would help by taking hold of one of the handles then Bryan decided to push on Mark’s back to be helpful also. The result of their teamwork was that we all ended up on the ground and my Chairiot was on its back and I was looking up at the sky. It was all somewhat graceful and no one was hurt so we all laid there laughing. Thankfully my head was securely supported by my recently donated head rest which held my head firmly in place. As we continued our hike we talked about how grateful we were to Chip and Colleen VanderWier and all the people that contributed to the Chairiot project. I would not be hiking in the woods without this chair.
So I want to thank you all again.
Transferring me from my wheelchair to the couch can look very different depending on the person transferring me. Mark has the transfer down perfectly. He lifts me up, guides me to the couch, sits me down and with one single swoop he lifts my legs onto the couch with his right arm and with his left arm he supports my head and neck and gently lays my head on the pillow. Kelly and Bryan are pretty good at the transfer but Chad and Corey still need some practice because sometimes they miss my pillow and then we start laughing as they tug and pull my body to the pillow.
Laughing is a bad way to start the transfer because my legs always buckle when I laugh. One evening my friend Cindy was visiting while Mark was gone. For some crazy reason Cindy and I thought we were strong enough to do the transfer ourselves. Cindy is very strong but also very short. We formulated a plan but our first two attempts didn’t work because we were laughing too much. Our third attempt was successful but it wasn’t perfect. After leaving my wheelchair and heading for the couch I fell and landed on the opposite side of the couch that we were aiming for and Cindy landed on the floor. We were surprised that we didn’t hurt ourselves but it made for a great laugh.