by Misty Boyd
“Wow,” Amy responded, not probing any further.
Carissa spotted a round table near the back of the room and, steering around the desks, she went over to it, moving a chair so she could pull her wheelchair up to the table.
English went as expected. She didn’t expect any problems. This would be her easy class, her favorite class.
Just as she was getting into her car, planning a relaxed rest of the morning at home, she remembered the doctor appointment. Instead of going home, she made her way into the medical center, the teaching hospital where she had been a patient her whole life. She’d grab a bottle of water from the machine inside the hospital to drink before the test. They always wanted to be able to measure how much urine her bladder could hold before it exploded. And that was a guarantee. Her bladder always betrayed her on these days. It was a fight she couldn’t win.
She arrived at the hospital in time to see an ambulance pull into the Emergency entrance, sirens blaring, and she whispered a quiet prayer for the person inside. She made her way up the handicapped ramp to the door and pushed the automatic opener. She took the familiar elevator to the third floor. Just outside the elevator, she arrived at the desk, gave the secretary her name and her doctor’s name, and rolled to the other side of the waiting room.
“Crap.” She had forgotten her water.
She went back to the desk. “Ma’am, do you think I have time to make a run to the vending machine before my test?” she asked.
“Sure. I’ll tell them where you are if they come for you. Take your time.”
“Great. Thanks.”
She raced down the hallway to the vending machine and pushed the button for water. She really wanted a Coke, but she didn’t want to explain that choice to her urologist. Water it would be. She chugged some as soon as the bottle came and secured it on her lap for the trip back to the waiting room.
Arriving back at the front desk, she saw a familiar nurse she’d known her whole life.
“Hey, DeeJae!”
A tall, slender woman wearing purple scrubs turned and flashed a big smile. Short blonde hair framed her sensitive face and hazel eyes sparkled behind rectangular glasses. “Hey, kid. You ready? Come on back.” DeeJae motioned her toward the door.
“Ready as ever.” Carissa followed DeeJae down the familiar hallway to urology. She’d made this trip more times than she could remember. She wondered why they didn’t just name the hallway after her.
“We’re here, kid. You know the drill. Cath into this cup, then get on the table. Everything off below the waist. Let me know if you need help. And I ran the student off. No guinea-piggin’ for you today. Not my girl,” DeeJae said.
“You’re the best. I’ll call you when I’m ready.”
Carissa did as she was instructed. It was routine by now and, when she was on the table in the most vulnerable position possible, she called out to the nurse.
DeeJae made her way into the room and gloved up for the procedure. “Do you have the cup with your urine output?” she asked.
“Yeah, I put it on the table.”
“Hmmm… not much today,” DeeJae said. “Did you drink your water?”
“I forgot until last minute. I chugged, though, as soon as I remembered.”
“Why am I not surprised that my favorite Coke-chugging patient didn’t get her water today? Carissa, you know what I’m going to say. I’m not even going to bother. You already know.” DeeJae gave her a warm smile to go with her pretend frown.
“I know. I know. I just don’t like the taste. I’ll do better; I promise.” Carissa replied, half-feeling terrible for treating her body this way, and half-knowing next year wouldn’t be any different. She knew water was best for her kidneys, but she just couldn’t understand how people drank that stuff all the time. No flavor, boring, yucky water. Maybe she would try. Maybe.
“All right, I’m going to start inserting the tubes,” DeeJae explained. “Let me know if anything hurts or feels different from the other times.”
Carissa laid there as all the tubes and wires were pushed into all their various temporary homes on her body. It was uncomfortable, but paralysis did help. She could feel some of it, but was spared the pain she knew would have come had she had full sensation. She thanked God for that as another tube went in.
“Okay, I’m going to start the saline now. Let me know when you feel the urge to go.”
After several seconds, Carissa thought she felt an urge of some sort, so she said so.
“Good,” DeeJae said. “Now, let me know when you can definitely go to the bathroom.”
After several more seconds, Carissa really had to go. She let DeeJae know.
“Great. Now tell me when you absolutely, positively cannot wait another second. You’re gonna pee, RIGHT NOW.”
It didn’t take long. “I gotta go!” Carissa exclaimed, as she felt the familiar, “too late” warmth. “I’m sorry,” she murmured. “I was too late. I had an accident.”
“It’s okay, Carissa. That’s what we want to know. How much pressure can your bladder hold before it releases the tension? It’s a little bit before you start yelling at me.”
Carissa laughed. She loved DeeJae; she always knew how to make the best of a mortifying situation.
After getting cleaned up and dressed again, Carissa went back to the waiting room for her second appointment. The doctor would look at her tests, determine if there was anything of concern, and give her the results. Usually, after that, she was cleared for a year. This was the easy part. At least the probes were gone.
Chapter 4
Dr. Taylor’s office was freezing, as usual. This man and his sixty-degree tundra. She never remembered to bring a sweater. At least she had her pants on now.
She stared at the old familiar walls of the exam room for what seemed like forever. The tile floor was painted with rainbows. The same cartoon characters painted on the ceiling had been there since she was a small child. Several children’s magazines and a toddler puzzle toy sat on a round wooden desk in the corner of the room. She guessed they were there to make kids more comfortable. She knew from experience that they didn’t help.
Just when she thought she’d been abandoned and forgotten, the door squeaked open, and in came feeble, gray-haired Doctor Taylor. He walked hunched over, leaning on an elaborately carved wooden cane.
“Hey, Doc, how does it look in there?” she asked.
“Hi, Carissa,” he said. “How have you been?” Without waiting for her response, he continued. “I’ve looked at your test results, and I see some things I don’t like. Are your parents here with you today?”
“Uh… no. I drove myself. Why? What’s going on?” A shiver of fear ran through her.
“Well, I compared the results from this year’s tests to those of last year, and I see some changes that may indicate a condition called tethered spinal cord syndrome. Have you heard of that?”
“No. What is it? Am I okay?” Now she was really scared.
The doctor leaned against the exam table, looking intently into Carissa’s file. He ran his fingers through what was left of his hair. “Yes and no. I want to have you go in for further testing. Your urodynamic study shows some bladder changes that are indicative of changes in your overall spinal health, and I’d rather be cautious and have a look before things get worse,” he told her. “We may be able to get on top of it.”
“On top of it? What are you saying? It’s going to get worse?”
He looked at her calmly. “It could, Carissa, but don’t worry. We’re going to look into it, and I’ll do everything I can to make sure you get the best care possible. Don’t worry. Let’s make another appointment when your mom and dad can come in, and we can all talk together.”
“Doctor Taylor, what does all this mean?” She could hear her voice starting to rise and tried to force herself to be calm. “Just tell me. I’m eighteen and I’ve dealt with spina bifida my whole life. I can take it. Just tell me what’s wrong with me!”
&nb
sp; “Okay,” he said in calm voice, as if he hoped that would lessen her apprehension, “if you’re sure you don’t want your parents here. You are eighteen. Legally, you can take care of all this on your own, and you’re a strong girl, one of my toughest patients.” He paused, gazing at her thoughtfully. “Carissa, tethered cord syndrome is a condition in which the damaged part of your spinal cord is attaching and being pulled on by other structures inside your body, most likely, in your case, scar tissue from your original closure. What this means is there’s a possibility of further bowel and bladder issues, and the loss of what little leg movement you still have intact. You would have a harder time transferring to and from your chair, and you may experience some severe pain if this is allowed to continue. Now, I’m not saying you have it, but your bladder is showing some definite warning signs, and I want to set you up for a MRI and a consult with a neurosurgeon here at the hospital.”
“Neurosurgeon? Surgery? I need surgery again?” she blurted. She couldn’t believe this was happening, had thought all the surgery was behind her. From the original back closure, to the various leg surgeries, and countless bowel and bladder operations, surgery had followed Carissa through her whole life. She just wanted to be done.
“Maybe, Carissa, maybe. I’m not sure yet. Let’s just take a look and see what the MRI says.”
“Okay…” she agreed, unconvinced.
* * *
Carissa sat in her car and cried for a long time. She couldn’t do this again. Another surgery? She had already had thirteen surgeries. She felt like a human lab rat. Did this ever end? Was she ever just going to be stable? “God, please, I can’t do this!” she cried out.
The drive home was long. She wished she had brought her mother to the appointment with her. She had been going through an independent streak since turning eighteen three months ago, but maybe she wasn’t so grown up after all.
She pulled up in the driveway and stopped. How was she going to tell her parents? They’d already been through so much with her. It seemed like she was constantly putting them through some new worry. She hated this for them as much as she hated it for herself. They didn’t deserve this any more than she did.
But it was time. She couldn’t sit here forever. She got out of the car and went inside.
Her mother was at the kitchen table, arms folded in front of her, fingers interlaced.
“Honey, Dr. Taylor called and told me. Are you okay?” It looked like she wouldn’t have to break her mother’s heart after all. Dr. Taylor had already done it.
“Mom, I don’t think I can do this, not again. I can’t let them cut me again! I’m so scared!”
“I know, honey. I know. But you’re so strong. You’re my girl. You can do this. God will carry you. And we don’t even know for sure yet. Don’t borrow trouble. I love you. We’ll get through this.” Sarah fidgeted in her chair, trying to convince herself to follow her own instruction. There was no need to panic about another operation until they had all the information. She knew that but, as she looked at her scared daughter, she could hardly hide her own fear.
“But, Mom, Kayla had surgery and never came off the table! What if…” Carissa had met Kayla at spina bifida camp when they were six. They had become fast friends, and had been attached at the wheels ever since. Kayla had gone in for a routine exploratory laparoscopy last year and had died during surgery. The autopsy revealed that Kayla had too much scar tissue in her abdomen, and one of the tools used during surgery had pierced a bit of intestine that was not where it was supposed to be, and intestinal fluid and acid leaked into her abdominal cavity. It ate at her organs before doctors found it, and she could not be saved.
“Honey, that will NOT happen to you,” Sarah assured her. She got up from her seat at the table and went over to wrap her arms around Carissa. “There is no chance of that happening to you. They aren’t even going into your stomach. It won’t happen. You’ll be fine.”
“Okay, Mom. I just wish Kayla was still here. I miss her so much. I need her here with me.”
“I know, baby. I know you miss her. She’s here, though, in your heart, for always, until you see her again in Heaven.”
When Jim got home that evening, before dinner was served, they gathered as a family to pray. Jim and Sarah laid their hands on Carissa’s body and prayed against tethered cord syndrome, against surgery, against harm, and against further deterioration. They ended the prayer by giving the whole situation over to God. If Carissa had to have surgery, they would trust Him. He was their hope in everything, and He was in control.
Carissa loved when her parents prayed over her. There was nothing like it. It brought her such peace. When she went to bed that night, she was totally relaxed about whatever God decided.
Chapter 5
Jim and Sarah laid in bed that night and talked about the day, about Carissa’s doctor appointment and the news it brought.
“Jim, what are we going to do?” Sarah cried and spoke softly. “I wish I would have been at that appointment with her. She must have been so scared. I should have been there. Why didn’t I insist on going? She tries to be so independent, and I try to let her, but she’s still my little girl. She still needs me!”
Jim patted her hand. “Sarah, Carissa wouldn’t have let you go to that appointment if you had tied yourself to her car. You know that. That child of ours is stubborn and independent because we made her that way. We had to! She will never survive without that stubborn grit, and you put it in her. Don’t take it away now. She needs it. And she’ll be fine if she needs surgery again. She’s always fine. She’s our girl. She doesn’t know how to be any other way.”
Sarah didn’t know what she would do without Jim. He had been her rock ever since the day they learned about Carissa’s diagnosis. He hadn’t cried when he heard their baby girl might not make it. As soon as she could get out of bed, he had immediately taken Sarah down to the chapel and prayed and prayed. He took everything to God. That was probably why they had made it through everything so far. She loved him for it. She never had to worry long, knowing that her husband took everything to the Almighty.
“Okay,” she whispered against his ear. “You’re right. Let’s get some sleep.” Sarah fluffed her pillow and leaned into Jim’s arm. He wrapped it around her and pulled her closer into his chest.
They kissed goodnight and, comforted, she fell fast asleep.
Chapter 6
Isaac woke up to his mom calling out to him from her bedroom. The caregiver must be late again.
“Coming, Ma!” He jumped out of bed and made his way into her bedroom, where he found her still in bed. Yep. No caregiver. Second time this week, and it was only Wednesday. It looked like he would miss class today.
He gently lifted his mom and carried her to the bathroom. He put her on the toilet to do her private things and told her, “Let me know when you’re ready for the shower.”
“Thanks, Isaac. Cindy’s late again. I guess you see that. I hate that you have to do all this.”
“Ma! You wiped my rear end for two years. I can help you out some. It’s fine!” He left her to finish up and went to make himself some toast. He scarfed it down just in time to hear his name again and headed back to help his mom transfer to her shower chair.
He didn’t mind any of it. She had raised him with all of her challenges, and it didn’t bother him one bit to pay her back some. In fact, he saw it as an opportunity some people never get. It did look like he was going to miss Algebra, though, and that Carissa girl. He wondered what kind of impression he had made. Good? Bad? Creepy? He hadn’t meant to come on so strong. There was just something about her. He had to know her. She was special. She was different, and not because of the chair. That was his normal. That wasn’t different for him at all.
He heard his mom call out again. She was done showering and needed help transferring to her chair so she could go about her day. From what he could remember, she had a coffee date with her girlfriends. He helped her get dressed and into her chai
r. “Do you want some breakfast, Ma? You don’t want to have coffee on an empty stomach. You know what it does to your bladder.” Isaac had seen too many times the embarrassment that paralysis caused when his mother had too much coffee on an empty stomach. Her normal bladder spasms worsened and there was almost always an accident. He hated it for her, and did everything he could to make sure it didn’t happen.
“I’ll eat some eggs, but only because you’re insisting. I don’t know what I would do if I was out in public and had an accident. I know the girls would help me, but it’s just so hard to take care of away from home.”
Isaac was relieved his mom agreed, and he pulled out a frying pan, two eggs, and some butter. He began cooking, melting the butter, and then scrambling the eggs right in the pan.
Isaac looked at the clock. 9 a.m. He had already missed an hour of class, and an hour of Carissa. That girl. He’d been thinking about her ever since he met her, wishing he’d asked for her number or something. Anything. And now he wouldn’t see her until Monday.
He finished the eggs and scraped them onto a plate. Walking them over to the table, he asked, “Ketchup?” His mother was the only one he knew who ate ketchup with her scrambled eggs. He didn’t understand it but, if the lady wanted ketchup, he would provide.
“You know me. Don’t bring those eggs to me without ketchup,” she joked, but Isaac knew she wasn’t kidding. He headed to the refrigerator for the ketchup, found it in the door, and walked back to place the plate and ketchup bottle in front of his mother.
“Here you go, Ma.” He sat down across the table from her and watched as she poured an unreasonable amount of ketchup over the eggs. He crinkled his nose in her direction.
She scarfed the eggs down in record time. “There. I ate. Now I have to run. The ladies are waiting.” She pushed back from the table, grabbed her purse, and headed out the door faster than Isaac could get out of his chair to open it for her.
