How a renegade lamp taught me that control is an illusion
While I understand that inanimate objects cannot have a mind of their own, there’s a lamp in my bedroom that would kindly disagree. I’ve had this lamp for a couple of years now. It’s set to a timer that turns on every night at 11 p.m. and stays lit until 7 a.m. This way, my third-shift home care nurses have some light in my room while they care for me.
Living with spinal muscular atrophy (SMA) and having nurses in my home all my life, I’ve grown accustomed to having a dimly lit bedroom while I sleep. However, at random times during different nights of the week, this lamp shuts off on its own.
Admittedly, I’ve spent an absurd amount of time trying to figure out why this happens. There are no patterns to the days and times it shuts off. It doesn’t overheat. The bulbs I’ve used aren’t faulty, and the timer on my bulb app only shows the two times I’ve set.
The only logical explanation that I’m left with is obvious: Ghosts.
Letting go
Of course, I kid, but after a couple of years, I’m still obsessing over this. Even though it has absolutely no effect on my life, I can’t seem to let this mystery go. All this time spent not knowing means I lack control of the situation, and in life with SMA, control has always been my comfort.
I’m someone who craves order. I plan ahead. I do whatever it takes to find stability in a body that’s often unpredictable. Yet, hard as I try, sometimes SMA refuses to cooperate. Illness strikes, muscles weaken, and procedures go wrong. I can do everything right and still watch everything fail. Sometimes the thought of that is scarier than a ghost tinkering with my bedroom lamp.
It comes as no surprise that SMA has taught me that control is an illusion. Yet, as much as I want to accept this uncomfortable truth, I grapple with it daily. After all, in my mind, control is my safety net. It’s there to protect me from disappointment, despair, or any negative feelings that may result from the chaos SMA causes. Control suggests that if I can grasp a situation and anticipate what’s to come, I don’t have to fear the unexpected. I don’t have to live in ambiguity when my body decides to have its own agenda.
Alas, I know that control doesn’t protect me. If anything, it exhausts me, which is why acceptance has become a work in progress. Despite what control tries to dictate, I want to loosen the grip on my circumstances. I want to prevent it from tricking me into believing I’m safe when I’m actually waiting for the next thing to go wrong. I want to let go of the need to fix that darn lamp.
The other night, it shut off for the umpteenth time at 4 a.m. I woke up, taught my nurse how to turn it back on using my phone, then lay in bed for a while trying to fall back asleep. The lamp, I realized, didn’t necessarily have to be fixed. All it takes is a few simple buttons to turn it on, which my nurses eventually learn how to do on their own. It’s not causing any inconvenience or harm. It’s simply an electrical mystery that reminds me that some things can’t be fixed, no matter how hard I try.
Maybe that’s the point, though. Maybe my ghostly lamp is trying to teach me that it’s OK to live in the dark. Regardless of whether I have control over the situation, it serves as a reminder that darkness will always give way to light again.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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