a person sits with their knees to their chest under a large moon with a African tribal pattern is behind them

Legs by Moonlight

Growing up, there was this short play that showed on television every Sunday evening at 6 PM called Tales by Moonlight. That name was fitting in so many ways; it came on at exactly the time the moon first appeared in the sky, which is also coincidentally when my restless legs syndrome (RLS) symptoms were at their peak.

Learning about my culture

Typically, my mom, any grandparent who was visiting at that moment, cousins, domestic staff, and occasionally, my dad would sit on the couch every Sunday to watch the play on TV.

I would sit on the floor with my back leaning on a wall and a throw pillow beneath my legs to keep me somewhat comfortable. A lot of the play's storylines were a depiction of typical African culture pre-colonization. These plays were created as a way to keep educating growing kids about different parts of our culture they were not privy to. Thinking back, my story for sure needed to be in one of those plays.

Raised by a community

My parents are very educated. Some of my grandparents were too, and the rest of my grandparents to a large extent, but that did not soften the effect of having RLS on me. You see, where I come from, we are big believers in the saying, "It takes a community to raise a child." This translates to all your neighbors, extended family, church members, etc., knowing all your trials and triumphs.

When my mom and the countless doctors she took me to failed to figure out what was wrong with me or why my legs wouldn't stay still, it was time for step 2: "Seek community advice."

And you best believe they have a bucket load of it sprinkled with all sorts of opinions to boot.

Theories and cultural beliefs about my restless legs

One faction believed I was an ogbanje. Let me explain – an ogbanje is a cursed child who keeps getting born and then proceeds to die only to be reborn into the same family and die again, always of unknown illnesses and the cycle repeats over and over again. So as far as they were concerned, me having an illness that can't be diagnosed means I'd soon die, and that makes me an ogbanje in their books.

Another faction believed I was possessed by demons and those demons were the reason why my legs couldn't keep still. My parents were asked to buy things like chicken, white candles, clay, etc., and come for deliverance at the church so the demons could be expelled from me.

A grand-aunt of mine even suggested burying the lower half of my body for 24 hours. This practice was used on kids with delayed developmental milestones and especially walking.

These events were traumatizing

Thankfully, my mother refused to buy into any of these, although she came quite close. What mother wouldn't want their child to stop suffering? But she knew there had to be another explanation.

As a child, these events were so traumatizing and also a big reason why I never mentioned having restless genital syndrome to anyone. Who knew what they'd have thought – or worse – done.

Sharing my story and why awareness matters

You would think in this day and age these things were a thing of the past, but no! I recently received a message that read:

Ma'am I got your contact through your cousin who works with me, my daughter is going through some health challenges. Everyone I've spoken to thinks it's some sort of spiritual problem. When I talked to your cousin and told her what my daughter's symptoms are, she said it sounded a lot like restless legs syndrome. I have never heard of such a thing. She sent me links of a lot of articles and stories you have written and oh my God, that is exactly what has been happening to my daughter according to her description. It is such a relief to know the problem is actually a medical one after all. Please I would like to know more, can we call you please. I'm very sure my daughter would like to connect with someone who knows exactly what she's going through.

I cried a little when I read that message. It is sad that the play Tales by Moonlight is still the sad reality of many, but I'm also glad that there's more awareness about restless legs syndrome, and thank goodness for the internet.

Even though I wish my mum found someone like me in the 90s to help her make sense of what was wrong with me, I am very glad that I and all of us here get to be that someone to so many others.

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