Dictated to mom on September 13, 2015.
Back in March when social media communication became difficult, Children’s Hospital set me up for an appointment at the occupational therapy. When we went to the appointment, we took all my technology devices that I was having trouble using, like my laptop, because I was finger poking. We took my Nook and phone and my magnifying glass—and by this time, I was needing a different colored background as white hurt my eyes. A lot of my appointment was my parents talking with the therapist. I did try out a raised keyboard. Sadly, my needs were too far advanced for them to help me. I did at one time get excited that I might try a voice recognition on the computer. I started speaking in the microphone, but what I didn’t know was that it was a bell! A BELL?! Yes, a bell—so if I needed help, I could ring the bell and someone could come to assist me. I thought this was funny because I was already yelling, “Hey, Mom!” At this point I had home health workers to help me.
It reminded me of a Calvin and Hobbes cartoon strip . . . Calvin is always trying to stay home from school, he finally succeeds because he really does get sick. In the strip as I remember, Calvin is in bed munching on a piece of toast. In his mind he is thinking, this is good, I want some more. In the second box of the comic strip, the toast is gone and Calvin’s mouth wide open yelling, “ROOM SERVICE!” In the last box, Calvin is smiling at this mom—he says, “That was quick!” His mom’s replied, “You are going to school tomorrow!” Now that I am here, I remember this cartoon strip as yet again my body has changed for the worse over the past weeks. I know I’m not the only one here at the nursing home that needs help, but now that my body requires more care, I’m finding that my nurse-call button is nothing like what I got at home. One of the main reasons why I don’t have peace about sitting all day in the wheelchair is what the tumor pressure on my spine does to my bowels, not being able to get up and use the bathroom when I need it or for how long I need it, is something that really bothers me. Although there have been some good changes, in the evening I am helped out of bed to use the bathroom. It is still the number one reason in which I can forget all the fruits of the spirit and be really rude . . . this bothers me too.
There are a lot of other changes that go along with the others. I’m having more pain spasms, headaches, incidents feeling of my head spinning, more incidents of choking, more numbness in the upper spine, and the hardest of all is weakness in my right ankle and complete numbness in the right hand and arm. Physical therapy is working with me on transfers from the wheelchair to the bathroom on the right side. My left side has always been my stronger side—strange because I’m right-handed. One of my strengthening exercises is to stand between two parallel bars. As I grasp the bars, PT works me by shifting my weight to the right. This is hard because not only can I not feel the bar with my right hand, but I also try to tell myself I’m not spinning, but actually standing still.
Now that the fall season is here, school has started and the football season is beginning. When my roommate Tasha visited a few weeks ago, we were talking about a lot of memories. One of my favorites was going to church with her on Sundays. We would came back and make some kind of hamburger helper—watched hours of football in the living room. Now that I can no longer watch football, I sometimes watch football movies in my head! My favorite is, “Remember the Titans.” At therapy, I remember a theme during one of my exercise therapies. They are up the fourth try on a play until they get things right. Finally, one evening, a play is perfectly done! Team Captain Gary in excitement smacks his partner Julius on his shoulder pad and yells, “Left side!” Send it first—Julius then returns a smack and yells, “Strong side!” As they begin yelling, the team sees it’s possible to come together. The rest is true history! So at therapy, as I’m trying to focus to shifting to the right, I want to start chanting this, but I didn’t because I know I would start laughing. I ended up having to sit down anyway. I told my therapist what I was thinking. Sometimes they probably wonder where I get this stuff from, but it makes sense to me. J
The thing is, after my standing or walking blindly in the spinning whiteness guided by my therapist—it’s those first few moments of sitting back down . . . being still . . . and just breathing that I appreciate the wheelchair. Those moments are short lived. Seven years ago, when I told God I would be okay living in a wheelchair, I didn’t think I realized what that truly meant. This is where I’m struggling because the more that my body goes down, the more I have to trust. The more I have to be still and know God. I realize I’m not ready to be still yet . . . this is where I am praying for peace.
John 14:1 “Don’t let your hearts be troubled. Trust in God, and trust also in me.”