Ready or not I have graduated to a Hoyer Lift to help move me and the first time we tried it wasn’t pretty. We’ve had this big beast parked in our spare bedroom taking up valuable space for a few months. My legs are failing me and it’s getting harder for me to stand without my knees giving out so we decided to try the lift to give Mark’s back a break. After watching a YouTube video on how to use the lift, Mark laid me down on the couch on top of the hammock that was going hold my body when he lifted me. He attached the straps from the hammock to the arms on the lift and started to lift me. The fabric on the hammock spanned from my neck to the tops of my legs so when he began to lift me my head fell back to an uncomfortable position and my legs fell to the floor causing my back to arch. I don’t think the Hoyer Lift was designed to transport a patient with severe muscle weakness issues so Mark went back to the YouTube video and watched it again. Heaven forbid that he would ask for help from one of our many friends and family members that are nurses and physical and occupational therapists. It’s much like a guy not asking for directions because he thinks he is not lost and can find his way on his own. Anyway, before Mark aborted the lift he had an idea. He found a strap from my wheelchair that we weren’t using and he put it around my head and attached it to the hammock hoping it would support my head. Then he got two of his belts hoping they would support my legs. Lucky for me Kelly showed up and started laughing at us as Mark tried to lift me with the new adjustments. Both the strap and the belts worked for a short time but they were not secure so we decided we needed to get some help. Kelly called Airway Oxygen where we got the lift to see if they had a larger hammock that would cover more of my body and they did so they delivered it to us that day. The next day we tried the lift again with success. The new hammock worked perfectly and as Mark gently raised my body up with the lift and as I was dangling in midair he said it reminded him of hoisting an engine from a car.
A funny thing happened while Mark, Kelly, Harrison and I were out for a walk a couple of weeks ago. We stopped by a flower garden and Kelly asked me what one of the tall purple and yellow flowers were called and I said they’re called flags. She didn’t understand what I said so I repeated it several times. She still didn’t understand me so she asked Mark to help her. After several more unsuccessful attempts they asked me to spell the word. I spelled flag and they finally guessed the correct word but looked at each other confused. They looked at the garden once again and saw some American flags sticking out of the ground so they thought I didn’t know the name of the flower so I diverted their attention to the flags. The funny thing is I never saw the American flags until they pointed them out to me. I decided it would be faster to explain when we got home where I could be in front of the Tobii that the name of the flowers were called flags also.
I have written a lot about Mark in the last couple of years and oftentimes without his permission, and this is another one of those times.
In 1982 when Mark and I were in our twenties and Chad was two years old, Mark had been out of the Navy for a couple of years and decided to take advantage of the G.I. Bill and go back to college. At that time Mark was working third shift at Consumers Energy as a welder, so he would work all night, come home around eight in the morning to sleep, get up at two in the afternoon to study, make dinner and then head off to school. Finally in December of 1988, after three more babies—Kelly, Corey and Bryan—Mark graduated from Grand Valley with a 3.88 grade point average. During those six and a half years of study our lives were very busy but Mark was able to stay dedicated and strong and today I’m so grateful that he remains dedicated and strong.
Happy Father’s Day, Mark. I love you.
Heavy Jello is how one ALS caregiver described her husband’s weakened body while trying to move him. When Mark sits me down he has to make sure I won’t fall back, forward or side to side while also making sure my feet are in a supporting position, my arms are on my lap and my neck is secure. It’s a lot to remember for what seems like one simple task.
Imagine not having a voice and trying to get someone’s attention. Now imagine not having a voice or the use of your arms and legs and trying to get someone’s attention. Losing my voice is harder than I thought it would be. The first time I tried to wake Mark up after I lost my voice was pretty scary. I was sitting in my wheelchair next to him while he was taking a nap in a La-Z-Boy recliner and I was watching TV. My arms were by my side and falling asleep so I tried to wake him but my voice wouldn’t speak. Even though we were sitting next to each other and within touching distance I couldn’t move my arms and legs to touch him and wake him up. I know I didn’t have a life-threatening plea for help but it still was scary. Mark woke up on his own and I survived my first time without a voice and the grim reality that this is how it’s going be for the rest of my life so I better get used to it or die, but it’s really hard.