What My Mentally-Challenged Sister Has Taught Me About Life And Love

by Justyna Czekaj

My sister rides the short bus; it comes to pick her up in front of my mom’s house four times a week.

My sister's name is Brygida and she will be 42 years old this September. Shortly after she was born, Brygida began foaming at the mouth and convulsing uncontrollably in the hospital.

This would be the first of many seizures that would come to define her childhood. There would be days when she would have as many as 12, turning the color of a blueberry until my mom would run barefoot to the street with my shaking sister in her arms, so she could flag down someone to drive her to the hospital.

This was communist Poland in the 70s, so not everyone had phones or cars. It wasn’t until Brygida was in grade school that my mom learned that in addition to being an epileptic, Brygida was also mentally challenged.

She just couldn’t seem to retain information and would withdraw from her surroundings. We don’t know what caused it, and after so many years, we are far from caring.

When I’m asked to describe what her condition is like, I say, “In her brain, it’s as if she’ll be 12 forever.” This is the way I have come to see Brygida over the years.

For so long, I didn’t want to write about her. I was always worried about introducing her to friends because she looks different, won’t shake your hand if she’s feeling shy and will leave the room if she doesn’t want to talk to you.

I feared my friends would become uncomfortable around her, wouldn’t know how to act or would talk down to her as you do to an infant.

I would talk about her with awkwardness because I knew, eventually, the questions would come: “Oh, where does she live? What does she do? Is she married? Does she have kids?” 

I was embarrassed to answer that she lives with my mom and will continue to do so until my mom passes away and I become her guardian.

She works in a greenhouse at a program for adults much like her. On some days, she goes to classes where they teach her how to count money, tell time or fill out applications for the many government programs available to her.

Brygida will never get married. She won’t have children because she is below the level of intelligence required to become a consenting adult.

She will never feel the overwhelming rush and excitement of falling in love, the sensations of having sex, the stresses of holding down a job and providing for herself.

She doesn’t understand the strength and need for independence because being alone to take care of herself would devastate her.

She won’t read good books because she doesn’t have the mental span to comprehend them. She won’t write because she can’t process thoughts deep enough beyond her daily needs. She hates to travel because her brain is addicted to habits and routine; any disruptions tend to uproot her and give her anxiety.

As I’ve grown older, though, I have stopped caring about what others think and have started ensuring my friends and the people who meet my sister make her comfortable, rather than the other way around.

Even though Brygida will never have a life many of us consider “normal,” she shows me the things I once thought were important are far from being so.

When I’m nearing my mom’s home after a two-hour drive from New York City to Connecticut, I’ll beep as I pull into the driveway and she will run from the house with her arms wide open until she catches me and wraps them around my waist.

She’ll hold my hand as we’re shopping or as we’re watching TV because she won’t tell me she missed me, but she still wholeheartedly wants to show me she did.

From her bedroom window, you’ll hear her singing Michael Jackson tunes off-pitch and off-key, mispronouncing most words because of her accent. But she won’t really care what you think of her.

Her prerogative is to do what she wants every moment of every day because that is what makes her happy. It often makes me question why any of us would do anything else.

Brygida is never scared to hug or kiss me, doesn’t feel vulnerable when she curls up in bed next to me and always lays her head on my chest showing me she needs affection.

My sister doesn’t have a handicap. "Handicap" is a word we have placed on her to define her, to put her in a box, to bullet point her limits.

The word is there to make ourselves comfortable with her differences. It is our way of compartmentalizing the world, needing to organize things and trying to control what, in its essence, is chaos.

Brygida does not see herself as handicapped. Yes, she is different but she thinks that’s what makes her unique.

I hesitate when someone talks about my sister and her “special needs.” Brygida’s needs are not special because they are the most basic ones.

She is happy in our home because she wants shelter. She will throw a tantrum that can be heard in Jersey if there are no cold cuts for her sandwiches left in the refrigerator; she wants to spend no time hungry.

Brygida wants love and is undeterred in her attempts to get it and make that known.

She will dance in her room for hours, watch reruns of "CSI," flick cards across her tablet as she plays solitaire because she wants to have fun.

She’s never too busy to sit down and talk with me, to kiss me on my cheek when I put it in front of her lips, to lay with me on the couch as I devour another book. She creates her own rules and will be unrestrained by ours because, why shouldn’t strawberry ice cream be a bedtime ritual?

Rarely do I see her unhappy. It is unlike her to complain, and more often than not, you will find her smiling.

It is our needs that are the special ones. No matter how often we have them fulfilled, we are insatiable. We want more. We cannot muster gratitude for the kingdoms we have built around ourselves.

Brygida doesn’t take selfies. She won’t be getting tons of likes and follows, and she won’t make six figures, but she can dip her toes in a river and feel pure joy. I can’t talk to her about boys, but she has liked the ones I’ve brought home to meet Mom because she doesn’t judge or dislike or ask anyone to prove themselves.

She hasn’t become jaded when people haven’t lived up to their humanity or said mean things to her or looked at her funny. Brygida lets it go because, in her world, no one is worthy of killing her vibe.

Every morning, she wipes the slate clean, rather than holding on to the past. She begins the day with excitement, waiting for the adventures surely in store.

So, when I say Brygida will be 12 in her brain forever, I do not do so to explain her condition, but to describe her magnificence.

She will forever keep her childlike disposition, curiosity and appreciation of the wonders around her, even while so many of us struggle with the thought that these wonders may no longer exist.

She will always love fully and openly with no restrictions. She will laugh in waves and be happy because she sees nothing of more importance.

My sister rides the short bus because they only let you on it if you know how to shine.