When did standing up become a multistep process?
FSHD symptoms have made getting upright difficult for this columnist
Back in the 1980s, as a high school special education teacher, I enjoyed giving my students an assignment at the start of the school year to see if they could follow directions. I told them to read the document I handed out before doing anything. The directions on the top of the page also instructed the students to read the entire page before they took on any task.
There were a total of 10 steps to follow. It was immediately evident which students followed instructions. (You can try a similar test here.)
The first direction was to stand. The second was to sit back down. A number of additional instructions followed, but the last one was the key: It said don’t follow any of the instructions above. The students were simply directed to write their name on the bottom of the page. Needless to say, I had a lot of students standing up, sitting down, and following lots of other instructions they could’ve skipped.
As I was thinking about those good old days when I was a relatively healthy teacher, husband, and father, it occurred to me that the first instruction on this test was to stand up. It was just a single step. Most people can stand without giving it a thought. Not so much for me at my stage of facioscapulohumeral muscular dystrophy (FSHD).
I recall doing a self-test about three years ago. I sat on the hope chest at the foot of our bed. I attempted to stand up without pushing off with my hands. It was a bit of a struggle, but I was able to do it at the time. I tried it again just a little while ago, and nothing doing!
My 8 steps for standing
Standing up has evolved into a multistep process for me.
Step 1 is to explore the environment around me from a seated position. As a blind guy, this exploration requires a lot of reaching around to “see” what I can use.
Step 2 is to determine if I have enough room in front of me. I have a lot of forward motion when I try to get some upward motion.
Step 3 is chair analysis. Is the seat of the chair solid? Is it going to slide or roll when I push off? Can I get my hands positioned on it?
I use the seat of a chair to push up, not the arms. I find that the arms of most chairs put my own arms in a position where I can get very little lift because of my weakened shoulders. The same goes for a typical table or the back of a chair. They don’t help at all for Step 3, but they do come into play for Step 5. But I’m getting ahead of myself.
Step 4 is to plant my feet solidly on the floor, perhaps 2 feet apart. Much like a baby first learning to stand, I have to spread my feet somewhat so I can stand. I’m not sure why, but the spread seems to improve my stability.
Step 5 is to grasp the predetermined table, chair back, or counter and pull myself into a semi-standing, hunched-over position. I can’t go directly from seated to fully erect without stopping to pull my feet in and rebalance.
Step 6 is to straighten up to a fully erect position and rebalance. If I take this step with too much oomph, I find myself fighting not to fall backward. It’s a delicate, artful step, not a brute force operation. I’m not quite sure why I even take this step. As soon as I start to walk, I immediately stoop forward, walking in what I call my “Sherlock Holmes looking for clues” posture.
Now that I’m standing, Step 7 is to find something I can get a grip on in the direction I want to go, presuming I’m getting up to relocate. If I don’t have a place to go, I go straight to the last step on this test.
Step 8 is similar to the last step on the test I used to give my students back in the day. “If you don’t have a destination in mind, skip all the above steps. Stay seated until you’ve got some place to go!”
Years ago, my physiatrist advised me to stand and walk when I had to and take every opportunity to sit. She gave me this advice as a way to limit pain and further damage to my reconstructed knees. It’s proven helpful in dealing with my FSHD as well.
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