A limp. It all started with a limp. That much I remember pretty clearly. Now, initially, the limp was so subtle that if you didn’t know my mother, you probably wouldn’t have even noticed. But those of us who knew my mom well knew that she always had impeccable posture and a very regal stride, so seeing her limp was my first inkling that something was wrong.

Of course, with my mother being my mother, her natural inclination was to assure me that everything was just fine. “It’s probably the way I’ve been sleeping,” she told me. “Maybe mommy needs to wear different shoes, but don’t worry Pumpkin, I’m just fine.”

But everything wasn’t “just fine.”

It was the summer before fourth grade and we were on our annual family vacation. We were spending the afternoon at a local skating rink, a pastime my family had long enjoyed. We all laced up, hit the rink and began to go around. I got on first and my mom was right behind me.  I’d made it around the rink one full time when I realized my mom was no longer there.

Sylvia Photo 4

I looked back and saw that she was being helped off the rink by my dad and aunt. She couldn’t keep her balance well enough to skate around the rink even one time.  I’m not quite sure why, but that was probably the first time I thought I might be losing my mom.

I tried to put those thoughts out of my head, though. After all, I was just 9 years old and I really wanted to think about the things normal 9 year olds thought about, like learning to add advanced fractions or reading The Baby Sitters Club.

Unfortunately, my mom’s condition was becoming more impossible to ignore.  By the middle of fourth grade, my mother could not walk at all without the aid of a cane.  And sometimes, even with the cane, she would fall without warning and that was absolutely awful. I’d just be lounging around the house watching television or playing with my siblings when all of a sudden, there’d be a loud thud, followed by a thunderous crash and then my mom’s loud, piercing screams.  I never asked her, but I figured she was partly crying out because of the pain of the fall, but also because she was getting sicker and sicker and we had no idea why.

By the time I was in fifth grade, my mom needed a walker to get around.  She now wore braces on her legs and had begun losing muscle mass around her naturally thin frame. We were getting pretty desperate for answers. And then one day, not long after my parents returned from a trip to the Mayo Clinic, I got the news.

I was at my grandparents’ house watching television when my grandfather came into the room and asked me to mute the TV.  He said “Sylvia, your mother has Lou Gehrig’s disease,” and to be honest with you, I don’t even remember if he said anything else after that. I just know that once I heard the word “Gehrig,”  I began wailing uncontrollably and I could not stop.  I cried alone in the dark for the next two hours, hoping against hope that my grandfather would come back into the room and tell me there’d been some terrible, awful mistake and that my mother would be just fine.  And looking back at 10 years old, I didn’t even know what Lou Gherig’s disease was.  Something about the disease’s name, though, just sounded like death.

Unfortunately, my feelings were correct.

Lou Gherig’s disease, otherwise known as ALS, or Amyotrophic Lateral Sclerosis, is a disease that eats away at the nerve cells in between a person’s brain and spine, causing paralysis & muscle weakness.  Nobody knows what causes it, nobody knows how to cure it and there’s no coming back from it.  Its outcome is always death by respiratory failure.

According to the ALS CARE Database, 60% of those living with ALS are men and 93% are Caucasian, but somehow, this disease had forced its way into my African-American mother’s body and all of our lives.  The whole thing felt like a nightmare or a horrible mistake, but it was indeed our new reality.

I was numb after learning of my mother’s condition, but of course, it was my mother who revived my spirit.  She put her arm around me and told me she didn’t want me to worry, and that she was fine. “Mommy is still mommy,” she said, “I’m just a little slower.”  And there was something incredibly comforting about knowing that no matter what happened, she’d always be my mother.

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But, I would continue to be haunted by watching my mom’s steady decline.

Over the next year or so, my mother’s deterioration would accelerate.  By the time I finished sixth grade, she was wheelchair bound, unable to use her hands and her speech was heavily slurred.  In fact, I routinely acted as her translator (as I could always understand what she was trying to say) when she wanted to engage in conversation.

When I entered junior high, my mother, a former federal contractor, PTA president and all around Supermom, was now an invalid.  She had to be fed, dressed & bathed. She’d typically call on my sister or me to turn her over in the middle of the night; she was too weak to turn over by herself.

My dad was now working from home. My grandparents came over almost every day, and my siblings and I were all pitching in with cooking and other chores.  Even with all of us helping and hiring a day nurse, we still felt completely overwhelmed by mom’s ailment.

Then finally after a six year battle, we lost.

Mom died at age 47. The last thing she ever said to me was “I don’t feel well.” She left behind a husband, and children ages 15, 12 and 9. And as horrific as my mom’s illness was, the worst part is that we still don’t know if it’s really behind us.

You see, there are several classification of ALS.  The two most common are sporadic, meaning the disease can randomly impact anyone, anywhere, and familial, which means the disease in genetic.  When the disease is familial, it means that each of the impacted person’s offspring has a 50% chance of inheriting ALS.  Because we—like many other Black families—haven’t done the best job of tracking our family’s medical history, we’re not entirely sure which classification she had.

And as a result, my siblings and I will spend the rest of our lives not knowing if we could be impacted.

With that in mind, in the spirit of ALS Awareness Month, I’d just ask everyone to sit down with their families and learn their histories, so that you can be better prepared to fight, if you ever notice a limp.

Keep up with Sylvia Snowden at www.trulysylvia.com