Author: Abbey
Contact: abbey (at) repunk.com
VOY, Torres, Miral, OC, rated PG.
Summary: Miral Paris reflects on her sister’s disabilities.
Acknowledgment: Thanks to all who gave helpful comments on how to approach writing this, and especially to Djinn for the beta.
******
She was wild. I know this from the stories I have been told, and from my own early childhood. But Mom hasn’t been wild, unencumbered, in years. When I was five, and at that curious stage, I would press Mom to retell the circumstances of my birth. “The ship was going transwarp, and everything was shaking. The more it shook, the less pain I felt. When we stopped, in the Alpha Quadrant, you were there. And you were perfect,” she would tell me.
I turned out to be the only perfect one. My sister was born two years later, and she was not normal. It was in her eyes, I am told. In the way her eyeballs rolled back with no warning, in the way they twitched rapidly from right to left. Of course, this is in retrospect. At the time, those signs were ignored, even though Tarin learned more slowly than her peers. But today, Mom will insist that she always knew something was different about Tarin, something she didn’t put together until that first seizure.
I was seven. It was a lazy Sunday morning. I lay awake in my constellation covered sheets, counting the constellations on my ceiling. Hearing a noise like choking, I walked across the room to Tarin’s bed, and saw her shaking, her eyes wide. Her teeth were grinding together, her fingertips blue.
I suppose I have repressed much of what followed. I remember the medics transporting to the room and taking her quickly, as she was still shaking. Mom and Dad told me to stay home, and that they’d send someone for me very soon. I don’t know how long I was alone. But I felt that the entire house could come and alive and cut me into tiny pieces.
Suddenly, there were hands tight on my shoulders, and a voice so hazy and unexpected it made me jump. “You’re staying with me for the day.”
I wasn’t afraid of Admiral Janeway for very long, if I ever had been. She took me to an outside caf�. It was a beautiful day, and my doughnut, lemon-filled, was good.
“Will Tarin really be okay?” I asked.
The Admiral set her coffee down and looked at me seriously. “She will be okay, Miral. But life will probably be very different for her and for your family. But I know your mom. She’s strong enough to handle it. And so are you.”
The Admiral briefly swung by Headquarters with me in tow, but we spent the rest of the day at her apartment. I filled a sketchpad with shuttlecraft drawings, and she helped me dig through her stash of food. When it became apparent that Tarin would not be coming home that night, Admiral Janeway ordered a few vids of cartoons, and we settled down to watch them. I was asleep before the first was finished.
******
Life did change. Tarin now needed many accommodations at school. Her capacity to learn decreased as her condition worsened. I outgrew her even more than was natural. I did not resent her because she could not be my playmate anymore. I did not resent that she was different; Mom taught me honor. She taught me to clock those who laughed at Tarin’s retardation, at her protective coverings.
Aggression is Mom’s strong suit. But its unseen partner is bottomless doubt. When she piloted the shuttles taking me from activity to activity, she would let this loose. “I worked on experimental engines during that pregnancy,” she bemoaned once, as we made for Mars. “What if I hadn’t? She could have been normal.”
What was I to say? I did not remember Tarin’s birth, or the pregnancy preceding it.
At home, Tarin would collapse without warning. She’d be eating with us, slowly discussing the galaxy’s news, or the happenings at her school, and suddenly her neck would pitch down, and our glasses and plates would come smashing to the floor. Or often, I would putter around our room in the morning, and no matter how quiet I was, Tarin would wake with a seizure. I remember that Dad was not good with dealing with these events. They always shocked him, no matter how many times he’d seen them. It was as if allowing himself to become too deeply entangled in Tarin’s pathology would pull him down as well. He loved her, and he tried. And as things are now, they are much closer.
During those early years, Mom constantly reminded me of how Tarin was special. Not “special” as my classmates derisively called her, but truly better because of her disability. I accepted it as true. I knew no other child who worried about others more, laughed more, nor one more curious about the universe. I suppose this was one aspect of why Mom became so fanatical. She’d seen what Tarin was capable of when she was feeling better.
The human brain is unfathomable. No doctor could tell us why or where Tarin’s seizures started. In the most advanced scans, they came suddenly from all corners of the brain: fully developed electrical storms. “Generalized”, they called them. And damned near impossible to treat. Surgery was out of the question, and the best drugs hadn’t worked.
Sometime during the period between my childhood and my adolescence, I gradually became aware of the strain. When Mom and I were traveling somewhere, she would look to the road of stars before us and talk about Tarin. And she would say “Tarin is the key to our happiness. If we can get her to a good spot, if we can get things better, just a little, it will all fall into place.”
It was hard for Mom to admit that there were some things that Tarin would never do. She would never be able to pilot shuttles or even a simple hovercraft. She could barely read at all, on good days. It appeared then that Tarin would always live with Mom and Dad, and that she would spend that life seizing. It was harder still because during those early years, Tarin had progressed somewhat normally, and could learn. Who could know what dulled her–the seizures, or retardation?
My mother fought it. I can’t say I blamed her, at least not at first. She stayed home to work on teaching Tarin, after all of the schools had fallen below her standards, had failed. She grieved. Sometimes, at family gatherings, I saw Admiral Janeway. I would sit near her, and listen to the stories she told about my mother’s engineering feats, my father’s flying, or something equally exciting in the present. During the trips home, Mom would be strangely quiet. On one such occasion, she finally erupted. “I don’t understand the fascination with Admiral Janeway, Miral. She’s chosen a very empty and lonely life. Can’t you see that? What happened out there is over. This is your family, this is now!”
Somewhere I was emerging into a greater stage of consciousness, and I could hear the desperation in Mom’s voice–the feeling that if she said those words with enough conviction, she would be able to live by them, too. It was only years later that I would wonder just how fascinated with Janeway my mom had been during those years in the past.
When Tarin was thirteen, and the drugs had long dulled her ability to grow mentally, things took a worse turn. What had been tenuously controlled before came back with a fury during puberty. No place was safe. She fell in bathtubs, on staircases, when walking back to the house. She wet couches and carpets and hardwood floors. Mom would brush Tarin’s teeth, and she would sometimes collapse to the floor. The nerve running through the front teeth was to blame, the doctors said.
I would watch Tarin in the bathtub for Mom. Her legs and thighs were always covered with yellow and blue bruises, and she moved with the slow grace of one who hears a voice all others have ignored. She was frail, doll-like, her eyes large, doe-like. Were it not for her propensity to drool, I am sure she would have made an excellent clothing model.
The search for a solution sent Mom into topics she would never have previously considered exploring. According to her research, the Bible called for epilepsy to be cured with prayer and fasting. I suppose she had been praying for years. When Mom found therapies based on fasting, they failed to help.
My most vivid memory of this time period is of watching Tarin at home one Saturday during a scientific convention, the first Mom had attended in years. Tarin had generally stopped talking to me, but not out of mental deficiencies. She could talk. And would, to others. Just not to me. I set Tarin up with some music and got to work on my homework.There were no seizures, but Tarin sat on the couch, staring into nothing. When I asked her about her week, or what she wanted for lunch, she said nothing.
“Answer me!” I screamed, throwing a padd across the carpet.
When Tarin responded, rising from the couch, it was with a scream of her own. Her mouth was wide, eyes bright, saliva pooled on her lip. I then came to believe that there is no real boundary between disease and mental illness. Nor was I sure that I was entirely well.
“You’ve got to adjust, B’Elanna,” Dad said at about this time. “There are many things Tarin can’t do. We’ve got to focus on making her as happy as she can be.”
The fight that followed was the worst I had heard. Mom railed against the local club of disabled teens. “Are you suggesting that I leave her with them for trips? Do you know what I heard one of the supervisors say about the last one? ‘Oh, they had a great time, and none of them got pregnant.’ I can’t leave her there. Nobody loves that child like I do. Nobody else is as invested in keeping her safe.”
Dad was furious that Mom seemed to consider her love stronger than his. He offered to stay home. He said he played with toys all day, but Mom was a scientist. She couldn’t be happy living like this indefinitely. She couldn’t always live a state of siege.
He said we’d tried everything else. Mom had sometimes talked of a pilgrimage to a world obsessed with healing, but had generally felt that a visit would be an admission of defeat. Dad said we should go. But that no matter what happened, Mom would have to realize the need for change.
I thought the trip was pointless. If Kahless or anyone else hadn’t helped us yet, why would it work now?
The world’s cooking was strange and the weather uncomfortable. Veiled and silent figures walked the surface, which did little to ease my nerves. But when we reached the shrine, I resolved to be as patient as possible. I would participate fully.
They laid hands on her. As Mom stared into the ceremonial fire, her forehead deepened more than I had ever seen. I was tired. I think we all were.
But soon, it became apparent that Tarin had not seized during the hours we spent in the shrine. Because of this, we stayed for two nights. There were no more seizures.
It turned out that the specific combination of magnetic fields and electricity found there stopped the seizures. The doctors were aghast that something that seemed so crude could have slipped through their grasp. The effect was recreated for Tarin’s daily use. She never seized again.
******
My grandfather held a party after this recovery. Dad, face jubilant and free, helped him set up a new antique grill, and light it. Family members and my parents’ coworkers swarmed around Tarin, and I found a quiet spot where I could pick through my meal in peace.
Admiral Janeway was nearby, and she stopped to sit next to me. I was still in shock, I told her.
“That’s to be expected,” she said, picking up a tomato slice.
I decided that I could tell her more than I could the average partygoer, and looked over my shoulder to make sure Mom was not nearby. “I wish it had been a miracle. I wish that maybe I could think some force was looking out for us.”
“I was in a similar situation myself, once. I’ll tell you this. It makes a lot more sense not to distinguish between rational miracles and irrational ones. Your family suffered horribly for many years. Now your sister will be much better. That’s a miracle, no matter how it came about.”
“I thought she would run to me. I thought she’d talk to me like she used to. It’s not what I always imagined.”
“No,” she said, leaning back in her chair, “it never is.”
Tarin was able to start a remedial program. She learned more than she could previously, and because of having no seizures, was able to start on a small job. But she didn’t confide in me. Not like she did when she was five and we’d build clubhouses in our room made of sheets and blankets. What the seizures took from her personality, they never really gave back. She’d been damned near catatonic when cured, and I suppose it was hard to know how to come back.
My life is easier. I no longer have to watch Tarin when she bathes. Though sometimes, my reflexes will kick in, and I will still jump when hearing crashing sound near Tarin, ready to catch her falling body. My mother is happier, even though she now has guilt over not visiting the world earlier. Dad is content and grateful. When we visit my grandfather, which is more often, due to Tarin’s increased ease of travel, we are served his attempts at twentieth-century hamburgers. They are burned on the outside, pink through the inside. I will leave for Starfleet soon, as is expected. I am pleased. It is a place where nothing involving Tarin’s abilities will need to influence my choices.
We all look back. My mother looks back and only sees the years lost, the years in which Tarin could have been well. The Admiral sees her ship, and the years she spent in its service, only to be stranded here. I think Dad wonders where he and everyone else permanently lost the sense of adventure and fun that had held life on Voyager together. Maybe I want to be apart from them, I don’t know. To prove myself. I know I want the years when Tarin loved me, and when I had sworn to violently do the same. I have looked between us all, and would give all the years of this world to see how this seeking ends.
END
Note: Christ’s statement of “prayer and fasting” as treatments for seizures
is found in the Bible in Mark 9:29, and is often cited by proponents of the
Ketogenic Diet, which begins with fasting, and later fools the body into
thinking it is being starved.