After a successful surgical procedure earlier this year, a 4-year-old Michigan girl with cerebral palsy took her first steps, and her proud mother recorded every "step" of the …
“I’ve always envied people who sleep easily. Their brains must be cleaner, the floorboards of the skull well swept, all the little monsters closed up in a steamer trunk at the foot of the bed.” ― David Benioff, City of Thieves
Living with cerebral palsy (CP) often comes with many unpleasant and often painful symptoms that, frankly, I could live without. I’ve often wished that medical science could come up with a wonder drug that would take away the painful muscle spasms and involuntary movements caused by the neuromuscular disability I acquired shortly after birth. Physical therapy and a wide array of medications can alleviate some of these symptoms, of course, but a cure is, at best, many decades away, despite the best efforts of the medical community.
One of my biggest issues with CP – beyond the social and emotional issues that I have to deal with daily – is that it has always been devilishly hard for me to get a good night’s sleep. I had trouble sleeping when I was a young boy living in the cold climes of Bogota, Colombia in the mid-1960s. I had trouble sleeping as a teenager and young adult in the muggier environment of late 20th Century Miami. And now that I’m a middle-aged writer in South Florida, I’m still having trouble sleeping.
When I was younger, of course, I never attributed my inability to sleep soundly to my disability. As a matter of fact, I rarely thought about having CP; only when I couldn’t ride a bicycle or build a model airplane did I consciously admit to myself that I was disabled.
Instead, I always attributed my sleep disorders to such external factors as:
– Emotional causes, such as school or relationship-related anxiety
– Environmental causes, such as hot nights in a house without central air conditioning or cold nights in residences without central heating
– Illnesses, such as my scary bouts of pneumonia and bronchitis
Take, for instance, the summer of 1976, the year of America’s Bicentennial celebration. Even though Mom had finally had a central air conditioning system installed in our house on SW 102nd Avenue the previous fall, I rarely fell asleep before one in the morning. I’d try, of course. I would go to bed around 10 p.m., but I’d toss and turn restlessly in a fruitless quest for a comfortable position. I couldn’t have told you why back then – I didn’t know diddly squat about muscle tension or spasms when I was 13.
Inevitably, I would turn on the lamp on my night table, pick up a book – usually one about World War II or space exploration – and read till I finally couldn’t keep my eyes open. On a good night, I’d fall asleep at midnight. More often than not, however, I would be up and about until one or two in the morning.
“Why can I never go back to bed? Who’s is the voice ringing in my head? Where is the sense in these desperate dreams? Why should I wake when I’m half past dead?” ― Emilie Autumn
To be sure, some of those long sleepless nights were caused by other factors aside from CP. There were times when I was excited about seeing my maternal grandparents (Grandpa, mostly; Grandma, who was strict and had emotional issues, not so much) on one of their rare visits to Miami. And worries about school, or girls, or the future in general often robbed me of badly-needed sleep.
For the most part, though, I now realize that the constant changes in muscle tone that plague those of us with CP are the primary cause of my issues with sleep. It’s difficult, if not downright impossible, to sleep well when I can’t find a comfortable position in bed.
I can try relaxation methods, such as breathing exercises or meditation. I can try muscle relaxants such as Flexeril (cyclobenzaprine) if my primary physician prescribes them. I can even try drinking a beer (or two) early in the evening in order to relax, even though I’m not too keen on consuming alcoholic beverages. Sometimes I can fall asleep easily and get a good night’s rest.
Unfortunately, my body – or more correctly, the neuromuscular condition that affects it – conspires against me.
Even though I have a comparatively mild version of CP, I suffer from muscle spasms. Most of them are painless or nearly so, but they make me twitch involuntarily even when I’m at rest. Some spasms are stronger than expected, and they can be painful. The worst of these affect my neck and shoulders; when I get a bad one, it feels as though an unseen foe is inserting a hot poker in my neck and twisting it slowly. I get those at least twice a day; when I am nervous or angry, the painful spasms are more frequent.
Since my muscles are constantly tightening and relaxing at random, sitting at my desk for long stretches of time can be tiring and often painful. The same can be said about lying in bed. All that muscular constriction and expansion prevents me from resting at ease. It’s insanely hard for me to find a comfortable position to sleep in. And to make matters worse, sometimes it hurts when I shift position in my bed. When this happens, the pain wakes me up.
Normally I’ll fall asleep again, eventually, but sometimes it takes me a long time to slip off to Dreamland. Sometimes I can’t go back to sleep at all. When this happens, I turn on my lamp, grab a book, and read until the sun comes up.
I have to admit that my apathy toward exercise is a contributing factor. I’ve never been conscientious about working out; I don’t like doing push-ups because I can’t attain, much less maintain, the proper position to do this exercise. I can try to keep my back and legs straight and away from the floor, but I can’t hold the proper pose for long. I also have a hard time with sit-ups, jumping jacks, chin-ups or most calisthenic exercises. I can walk, of course, and sometimes I’ll go for long strolls in the evening. I’m not terribly consistent about it, though. I’m no Jack LaLanne – I admit it.