by Katrina Givens Powers

My “Cheerleader smile” is one of my first tools that was instilled. It doesn’t matter what’s going on behind that smile, as long as you smile for the crowd. My mother was a cheerleader. I was born with poms in my hand. I am a cheerleader. You can do anything for five seconds. Just hold it five seconds more. And five more. Just five more.

Everyone was notably excited for our 20-something-year cheer alumni game. I know I can’t do it. Not that I don’t have the time. I have all the time in the world these days. My days are spent lying in bed listening to Frasier. Or lying on the sofa listening to Hot in Cleveland. But I can’t perform now. Once I put my feet on the floor, I know it will start to go dark. The warmth will start to swirl. If I don’t get to the floor, I will be injured, but maybe it’ll pass quickly and I’ll be fine.

It’s not fine.

I have Ehlers-Danlos Syndrome (EDS). A connective tissue disorder that affects every single part of my body. Collagen is the glue that holds our bodies together. Mine is silly glue. Accompanying my EDS is POTS. Postural Orthostatic Tachycardia Syndrome. When I stand up, my heart and blood pressure become rivals. Suffice to say, repose is my position of choice.

My hand and cheek graze the carpet as if I’m ending some dark modern dance in slow motion. After a moment I start to feel my breath. 1. 2. 3. 4.

“Mom, you good?” I can feel the feet behind me.

“Yup. Just gonna stay down here for a bit.”

“K.”

As I roll to my back, I see size 13’s walking away. I’m alright. I’m alright. Let’s try this again. Roll to my side. Pull my knees to my chest. Big breath. And I’m on my feet. Keep your head down though. You will be right back down there if you scare your blood pressure away. I’m alright. I’m Alright. Knee bend and I’m up! Please, Mufasa, hold your applause. Here’s your spinach now stop the mean meows.

Well, I’m up now. Is there anything I’ll need in the next hour or so? I scan the room as if I’m some poorly assembled robot. I don’t see anything I need, but I don’t remember when I went to the bathroom last. I get the toilet paper from the hiding spot (Mufasa is a sneak) and sit down. Damn. I left my phone on the sofa during the faint delay. Oh, well. This will be quick. It was not quick. My heart rate is hitting hummingbird levels. Is this long? Am I holding 72 ounces? Thank goodness Mom covered pelvic floor importance during our ‘teen talk.’

Which shoulder hurts less? Right. I’ll push myself off the stability rails with my right arm and pull up my pants with the left. If I bend down it may go dark. Hide the tp, and I’m set. I brush from wall to wall on my journey back to my spot, following markings of previous journeys. I made it. Breathe. Breathe. I pull my knees to my chest until my heart decides to chill. As the sweat starts to turn to freezing trembles, my mind drifts back to alumni night. I’m going to do it. The next time it comes around, I may not be able to stand at all.

Let me check to see what appointments I have a week before and a week after the game. I must have time to: 1. Not get injured. And 2. Recover. Now I have to see if my sister will do it, too. We’ve cheered and coached together since we could walk, so I want her there before I can’t any longer. But if I’m in a bubble until that night, I will have to visualize the routine to learn it. No problem. I will uber-modify it and stand in the back.

In the cool darkness of my room, I flex and point. And flex and point. Not in preparation for alumni night, but to make sure my ankles are where they’re supposed to be. I feel for new pains and make sure nothing has fallen out of place during the 45 minutes I managed to fall asleep. I feel like a mountain hiker waking up in bear land. Turn your head slowly. No sudden moves. You never know what crept up during your slumber. Go joint by joint. Start with toes today. Every muscle and every joint also needs to agree that it’s time to activate.

Man, this hangover. I don’t drink. My gallbladder and pancreas are on the opposing team. But I’m dizzy and have a migraine. I’m nauseous and in a cold sweat. I grab the clothes I put out last night and change while I’m lying flat. Now that I’m dry and warming up a bit, it’s time to slow my heart again. There’s the night’s sleep barreling towards me like a freight train. I wake up ten hours later and start the bear wakeup process again.

The sun is coming up, or setting. When you live the wild life of just trying to hold your body together, time truly is just a construct. This time muscles, joints, and hangover agree to cooperate. I find my markings and move to the sofa. Every muscle in my body pulls ten times its weight just to get me into the living room. Every step tediously planned. That’s it. No more moving for today. Time to slow my heart.

Tonight is the first alumni practice, and I’m a torrent of emotions. It will be the first time I use my crutches so publicly and for so long. When your previous moniker was “volunteer of the galaxy,” it’s tough to transition to “does she still exist?” But I do.

Valley heat is a wonder. As much as you can factor it into your plans, be kind in planning around it, and give it the utmost respect, it will still slap you in the face and leave a burn.

“Did you remember your parking placard? I’ll drop you off closer and find a spot.”

“That’s alright. I want time to refresh first.” It’s over 100 degrees at 6 PM.

Halfway to the gate, crutch on one arm, water and phone in the other, I realize this was a terrible mistake. I hadn’t accounted for walking around the stands, only getting TO the gate. Add 25 steps. Sweat is pouring down my forehead and neck. I can taste it. Please not my eyes. I have a towel tucked in the top of my shorts but I’m out of hands. She’s walking in step with me. Without a word she takes my water, and I wipe my face.

Cheer smiles activate. We approach a group of ladies. Some familiar faces and some new welcoming ones linked only through glitter. And cheer smiles.

Broken robo-scan has already noted the chairs at the left of the platform, the stairs to the disabled seating, and the itinerary that lists ONLY a new dance. After the niceties run their course, I know I have to speak with the coach to add in something that I can participate in.

As my mouth opens to speak, tears force their way out of my eyes. Stop. It’s not crying time! The tears cascade as I calmly try to add an oldie but goodie.

“Of course!” The coach who’s young enough to be my daughter emphatically agrees. “Is everything alright?”

“Great. Yeah, no. I’m alright. Thanks.” I’m alright. I’m alright.

I quickly deduce that my participation wouldn’t be as I expected. I wasn’t so much a participant but a videographer and assistant coach. I was trained by the best and so I expect the best. I would not allow those breaks in the song. I would not allow that song! Show the full routine first. Start with the first eight count. Repeat. Repeat. Repeat. Build on each section. Repeat. Repeat. Repeat. Clean up each section as you go, repeat the correct move. There are those who will take longer to catch on for whatever reason. Give them the time, support, and energy to do so. We appreciate it. Practice that dance in your mind; it should play on a loop. “Practice until you can’t get it wrong.”

You can’t un-know what you know. However, what you know is making counting this dance impossible.
At the end of practice, every alumnus asked for the videos to practice. My training sent me home to stretch and watch that video over and over. Dissecting every count. I don’t have to learn it myself but help my sister learn it.

The heat and walking have drained every ounce of salt from my body. I feel like a horse with my salt licks. The good old routine has briefly crossed my mind but there’s a block missing. I have to make sure she knows every move of the new routine before I can even think of the old. I’m not worried though. I know she remembers everything and will help me as soon as we’re finished. That person who takes five times longer to learn dances? It’s me. I am her. My sister, who is very vocally anti-facetime, facetimed me to make sure I knew every move and figured out the modifications.

Night two of practice went on without me. Two days in a row of heat is sure to put me out of commission.

Kinesthetic taped like a mummy, my body is prepared for the night’s performance. I’m doing my regular scan. Ramp to walk up to disabled seating to the left. Lots of people hanging out on it. Extra chairs on the sideline. Giant fan.

“Get in line to parade around the track!”

Wait. What?! That is a kazillion extra steps I didn’t account for. There’s a gate at the curve, one hundred something yards is doable. I think. Cheer smile. Turn your toes out. Don’t look down. Watch where your crutch lands. There’s the curve. Where’s the gate? I’m jumping the fence if it’s locked. There it is. I’m out. One hundred yards back to the start. Back to the air conditioned prep room. Knees to chest. Breath. My heart thinks we’re running a race. I’m trying to convince it we’re not.

The actual performance was a blur. As most of them were. I’m resting against the fence, knees to chest, and hear a familiar voice, “How are you feeling? Be sure you rest.”

It was my high school cheer advisor. We didn’t exactly see eye to eye in high school, but there was always a deeper connection. Our super heroes were Signa, Betsy, and Joyce. The undercover cheer dream team. A set of straight-laced teachers who were full of surprises. They were always ready to jump into action for us. When the vans would get too rowdy Betsy (my advisor) would turn on classical music. I’d mimic the jeers from the others as I twirled in my mind.

“I’m alright. I will.”

Then comes the third quarter. I grab a chair from the sideline to sit in formation. A game action cheer is called, and everyone in unison turns and claps. We didn’t practice any game action cheers, but every pom is in the same position. Our words stacked as one amplify the sound of the student section. My legs are weak now. They shake every time I stand up. My calves are burning, and my back feels like it’s twisted and skewed in some ungodly interpretive art piece. Just five more seconds. I can hold on for five more seconds. The intoxication of the game, the scramble through the files of my mind for the next game action cheer called. I don’t think about it. My body, conditioned to the words and moves, goes without me. Before I realize it, I’m chanting and moving. Step out, high V. Hit. Hit. Turn and wrap. Unwrap, dip, and clean. We weren’t told if we were ups or downs but everyone just knows. I’m in the back so I go up. My shoulders are tight. Sharp moves only. “LAST TIME.” Hold. 1.2.3. And rally. I felt my clavicle slip on that one. I try to slide it back up without looking like I’m being electrocuted. It’s back in. No one noticed.

“Just one more cheer.” My now excited sister is locked in. “The band is coming back.”

Our band is a machine on its own. The drumming cheerleader was my position back in the day. Having to devote hours exclusively to drumline. On top of the hours for cheer, every high school story I tell starts with, “This one time in drumline” or “Once at cheer camp.” Just five more seconds. “Hey Song” completed. Time to go. I’m a walking electrified ball of torment. Just make it to the car. Just make it inside. Just make it to the floor.

My feet feel like the fire ants that live there are having a circus. My legs are glued to the floor. They are now made of rubber cement. My right shoulder, which is normally the stronger one, is now sore and exhausted from the crutch. My left, which normally is a slack tension toy and liable to fall out at the drop of a dime, is now covered in lava pain that is running down my elbow. The brand new, shiny hip I got for Christmas went on full rebellion. That one did catch me off guard. After all we’ve been through? I thought we were standing strong.

Activate robo awareness scanning. I’ll need my ice machine for my hip. It’s in my room. I’ll need to sit up. I need my Tens unit and extra batteries. I need all my meds in arms reach and plenty of water.

Peeling off the tape on my back, I find a burn from it. The rest comes off smoothly. I continue to peel. Both ankles. Both knees. My back and neck. Then both shoulders are untaped. Tonight’s performance was sponsored by: Kinesthetic Tape, Holding me together one strip at a time. The one thing I overlooked was the sports bra. How on god’s green earth am I supposed to get out of it? I don’t. Too risky. My clavicle already slipped earlier so I guess I’m living in it for now.

I wrap my hip tightly in the compression pad. Electrodes stuck to my back and legs. In an instant there’s ice racing around my hip and thigh and electricity trying to break through the fire in my muscles. Just breathe. Breathe. Lift away from the mélange of fire and gnashing of bones that is my body. Be in pain later. Don’t drop your smile. Time to pay the piper.

I’ve always known my body was different. One year, my family (Mom, Dad, and sister) were at an amusement park. I was no more than 10 at the time. They were having a blast. I was just trying to hold it together. The three-hour drive. The sun. The walking. We decided to leave the park early, but my sister begged to go on just one more ride. No eleven-year-old wants to leave an amusement park early. As Dad and Sis left to find the line, Mom and I were sitting on a bench under a tree. The entire day is missing from my brain files. I don’t remember the roller coasters or the food, the characters or the laughs. I remember the leaves from that tree we were sitting under. One leaf was fluttering. I had my head on Mom’s lap looking up at it. There was no wind, but that leaf kept dancing.

Now that alumni night is over, it’s time to recover. The fire pain has now turned into paralyzing cement soreness.

My back is stuck and feels like it is going to shatter into a million pieces. My room is cool and quiet. My head is too heavy for my neck to hold up, and noises are intensifying my pain. So, it is quiet. I haven’t peed in almost ten hours. I have to stand up.

Disconnecting from my equipment is a process in and of itself. The Tens electrodes are stuck to my shirt, and the velcro from my hip compression is velcroed to the blanket. Everything’s off and put away. Time to get up. Roll to your side. Hang your legs over the side. Push and sit up in one move. So far, so good. Both crutches today. I don’t trust my legs not to turn on me. Breathe. Breathe. Right arm in crutch, left hand on bed. Feet are apart and I’m up. You never really notice how small doors are until you ricochet off them like you’re the ball in a giant pinball machine.

My family is going to the fair today. Opening day of the horse races. It’s something I’ve always wanted to do. The tables are in the middle of the field so you can watch the horses as you eat. I picture myself with a mint julep and foot-tall fascinator. I can’t go. I have an electric wheelchair but no way of getting it there. Another memory I’ll miss out on. The chair wouldn’t have helped anyways. My eyes want to close. It feels like I’ve been awake for 48 hours straight. Talking is unimaginable. My jaw won’t open, and it feels as if words would slice my mouth if it did. Be quiet. Be still.

The next 72 hours are more of the same torment. Painsomnia has only afforded a few moments of sleep at a time. Every joint in my body feels like it’s being held together with red hot wires. I still haven’t showered from the performance. Maybe I’ll try tomorrow. Showers are low on the priority list. When this point of pain comes along, my main concerns are rest, taking my medications on time, and water.

Once I do manage to fall asleep, you won’t hear from me again for two to four business days. The alarm for my medication goes off, and I toss a handful of pills into my mouth, take a drink of water, and I’m out again.

After almost a week in bed, I’m able to stand up on my own. I’ve missed one event that I thought I’d be recovered in time for. As much as I plan and schedule, my EDS body has the final say about whether if I can participate in life, or not. I know when I can push beyond my limits. When the event or memory calls for. And when it’s worth it to my spirit. Alumni cheerleading for homecoming 25 years later, worth it.

My everyday life has changed dramatically since high school. I once was a person who lifted other people. Now I can barely lift my head. Ehlers-Danlos Syndrome (EDS) is a genetic, progressive condition. Not knowing I had it for forty years, I did massive damage to myself. But also, I have the memories. I was the bass drummer cheerleader for the Big Green Marching Machine that got them to the Rose Bowl.

I’ve tried to leave glitter wherever I go. I’ve coached hundreds of cheerleaders, runners, jumpers, throwers, swimmers and that one time, football players. I’ve passed down music and persuaded the third-grade clarinet players that their instruments in fact DID NOT come with ChapStick.

This season of my life has been humbling. I’ve lost players that I thought were important to my story, but I’m still here. I’ve lost the use of my body, but I’m still here. I’m still here in every cheer, in every kick step, and in every “FIGHT SONG, FIGHT SONG.”

Once a Pirate, Always a Pirate.

You can find more Reedley stories in our Reedley News section.

I was born and raised in Reedley, attended and cheered at Reedley High and Reedley College. After decades of injuries and pain one diagnosis changed my world.