Warren R. Johnson —
When you are really fast asleep, you can actually jog in your dreams. If you stumble, you regain your balance in an instant; if you fall, you are back on your feet in a flash. Sometimes, in your dreams, you just run for the joy of running, because in your dreams you can. When you get tired you walk for a while, and then run another mile or two. Everyone with multiple sclerosis (MS) has such dreams. But wide awake no one talks about them.
Rather, wide awake you get up early, in case you need longer to get going. You don’t tell yourself what you will wear—you tell yourself how to put it on—-left arm then right, right foot then left. Everyone has a different formula and the formula changes from week to week, or even from day to day. And once that task is taken care of you tell yourself how to walk. Maybe today is the day you cannot stand up straight. Maybe today is the day you have to make an important presentation at work, or will have to write on the chalkboard, and must remember to hold on to the chalk tray, in case writing on the board causes you to lose your balance. And don’t forget to put the chalk back in the tray or you might drop it when you turn around to answer a question. Perhaps you won’t be able to pick it up.
One organization presents a sequence for TV—her eyes are covered with heavy chains and barbed wire, his legs are likewise bound, she can only use her hands to pray; he cannot lift the baby because his arms are too weak. The infomercial isn’t exaggerating. That’s what demyelination does. One day one thing is wrong, the next day another. Some days are marked by pain, some days are simply unusual. Sometimes you cope, sometimes you compensate. Who doesn’t?
After a while you learn to get up early and travel soon. If you anticipate a two-hour drive, then add two more hours to be on the safe side. You might need to stop along the way, or the traffic might become unbearable on the expressway, or the heat might bring on an attack and you will have to find your way alone. You might be stuck in a parking lot far too far away from the building in which you have an appointment, and you might have to rest as you poke along trying to get there, testing your cane, first in one hand and then the other, for today’s balance. The building might not have an elevator, or the elevator might be out of order, or you might be crowded out for being so slow. If you have to take the stairs, you have to take time to rest on every other landing; maybe you can look out the window while you are resting, acting as if that was your purpose in the first place.
After all of your trouble, if you can’t get past the door let alone up the stairs because you are in a wheelchair, go figure. You are on your own. Maybe the person with whom you wished to speak will come outside to talk to you, probably not. Most people with MS are not faced with that, anyway, because most are not in wheelchairs. Still some are, and many individuals with spinal cord injuries are, and some with spinal cord injuries can scarcely breathe on their own. The late Christopher Reeve couldn’t. He figured the cure for spinal cord injury would provide the cure for MS, too. He didn’t dream about sickness either. In his dreams he was out on his boat—sailing. Sleep provides an opportunity to do what can’t be done during the day.
But crippling disorders do not leave much time to weigh night against day. People don’t either. God bless them. In one and the same breath you’ll be asked, “Does it hurt? Will it kill you?” And you will be told in the next breath before you even have a chance to answer, “I knew someone who died of that…had almost a full life span, suffered a lot towards the end, but led a pretty normal life up till then.” And, “But gee! You’re looking good!” Small wonder, you think to yourself, having worked on holding all the pieces together since you got up in the morning. You offer a grateful “Thank you!” before you check your buttons for the one that might be left undone.
This essay was originally written in 1998.
Warren R. Johnson served in the U.S. Army in Germany in the late 1960s. He returned to the U.S. and attended Northern Illinois University under the G.I. Bill, earning his undergraduate degree in psychology and master’s degree in sociology. He then repatriated to Germany and taught college courses through the University of Maryland-Europe, mostly to U.S. service members and their families, for 40 years. He currently lives in Bavaria.