by Annette Mori
Carly insisted on coming early in the morning to dress me. I think she just wanted to calm my nerves. After she dressed me in my new hemp pants and pullover shirt, she sat down in front of me and pulled the chair close. She took both of her hands and clasped my curled up fingers while she tenderly massaged the palms working her way to the ends of my fingers. She leaned in and I could smell her peppermint gum as she kissed the spot between the corner of my mouth and my cheek.
“Belinda, I know you’re really nervous and I’ll bet you think that if you aren’t perfect today, somehow you’ll disappoint me or your family. I just want you to know that you will never disappoint me. I’m gonna give you the advice my mom always gives me before a big test—just do your best and it will always work out the way it’s supposed to. We are going to go to college together no matter what happens today. I know this in my heart.” She touched the skin above her heart. “And you know this in your heart.” She touched the skin above my heart.
I smiled at her and blinked once. I would make her proud if it was the final thing I did on this planet.
Fran skipped into the room before my parents and younger sister. “Hey, Bels, you ready to dazzle everyone with your superior intelligence?”
I blinked my response. I felt better having both of these amazing women in my corner. At this point, I didn’t need anyone else.
Carly moved back a little bit, but was still holding my hands and massaging them.
My mom and dad entered the room a few minutes later with my scowling little sister, Evie. It didn’t take a rocket scientist to figure out that she wasn’t here of her own volition. Fran glared at Evie.
Mom narrowed her eyes at my lap where Carly was massaging my hands. I thought Evie had a look of utter disgust on her face as her scowl deepened.
“Oh, hey, Mr. and Mrs. Moore. I’m attempting to loosen Belinda up a bit. It helps when I massage her hands because she seems to relax. You should massage her limbs when you visit—it really helps loosen her up,” Carly exclaimed.
I could tell that my mom was uncomfortable with Carly’s innocent statement, but she didn’t say anything in response. I wondered if Evie had shared the information about Carly being a lesbian.
Dad coughed. “Well, we better get going or we’ll be late for the appointment. You’ll have to thank your mom, Carly, for pulling a few strings to get us in today. I heard there was a six-month waiting list.”
I hadn’t known this, but I was very grateful she’d done whatever she did to get me in sooner. I was going stir crazy in the rehab center and another three months would have demoralized me even further.
Dad grabbed the back of the wheelchair that Carly had transferred me to and the rest of the gang followed him out.
We passed Nessa in the hallway and she stuck both thumbs up in a gesture of encouragement.
For the second time since my awakening, I was out in the world.
†
Mom, Dad, Evie, and I traveled in my parent’s car while Fran and Carly followed in Fran’s car. I wanted to travel with Fran and Carly, but they hadn’t asked for my opinion on the transportation arrangements. I could feel the hostility from my little sister as it emanated from her pores in the back seat. She slumped against the car door as far away from me as she could get.
I decided to close my eyes and dream up another story. I was good at killing time. A couple of hours in a car was child’s play to me.
Before I closed my eyes, I managed to turn my head slightly and glance at Evie, who stuck in earphones and turned on her iPod. She crossed her arms on her chest and maintained her scowl.
My parents were quietly talking with one another in the front seat, but I just tuned them out because I knew that I would not be included in any conversation they were having. When all you can do is blink your answers, conversation is quite limiting.
I opened my eyes just in time to view the approach into the city. Seattle is a beautiful city with the water and the space needle competing for the right to showcase the glory of the appropriately named Emerald City. For some, the rain was a hindrance, and for others, it was the source of the year around green that Seattle was so famous for. Like the Eskimos who had hundreds of words to describe the color white, I was sure Seattleites could spit off the names of the various shades of green.
My dad rolled me into the building and parked my wheelchair in the spacious waiting room. While my dad and mom walked to the reception desk, Carly removed the winter jacket they’d just put back on me for the short trip from the parking lot to the inside of the neuroscience center.
I thought it was a waste of energy to keep donning and doffing my jacket every time I entered and exited buildings and the car, especially when I was only in the cold for less than thirty seconds, but I suppose pneumonia was a huge risk for someone like me.
It didn’t take long for someone to call my name and for one of the staff to push me into the testing center. I don’t think my parents were happy when the assistant insisted they remain in the waiting room.
The assistant was a perky young woman who smiled easily and I liked her energy right from the start. She reminded me a little of Nessa, the one other aide I’d come to trust in the rehab center.
“Don’t worry, Belinda, Dr. Carter is the best. She’s a world-renowned physician and one of the nicest people you’ll ever meet. She’s not like most of the other snooty doctors around here. Oops, I’m not supposed to say that about the others, but it’s the truth.” The assistant giggled.
A tiny, middle-aged woman with short blonde hair and wire-rimmed glasses strode confidently into the room. When she looked at me and smiled, the kindness and warmth in the gesture reached all the way to her chocolate brown eyes.
“Hello, Belinda, I’m Dr. Amelia Carter and if you’re ready, we’re going to spend the next couple of hours evaluating your progress. I understand that you can respond to yes and no questions by blinking your eyes. Can I confirm with you that one blink means yes, two blinks means no, and three blinks means I don’t know. Was I given the correct information?” she asked.
I blinked once to let her know that was correct.
“Before we start let me ask, are you comfortable?”
I acknowledged with a blink that I was fine.
“Okay, let me explain the first test to you. I’m going to show you a word and then I will show you several pictures. What I need you to do is blink once when you see the picture that goes with the word. Please don’t be offended when I start with simple words, I need to do a complete test and we always begin with words you would find in a first grade reader. Are you ready?”
I blinked once to let her know it was okay to begin. As she started showing me the various words like cat, dog, house, apple, and other simple words, she followed each one with various pictures and I would blink when I saw the right picture. I was grateful for her words of encouragement throughout this first simple test.
“You’re doing great, Belinda. So far you’ve gotten every question correct. How about we go for a test that’s a little harder? Now, instead of pictures, I’m going to show you words and then various definitions. When you read the definition that corresponds to the word, blink once to let me know. The words will get progressively more difficult, so don’t worry if you don’t know the definition of a particular word.”
If I would have had the ability to laugh, I would have, because a few of the words included Carly’s word of the day. When she flashed the word lascivious, I felt my face flush. I was sure I’d turned bright red. When she held up the definition, feeling or revealing an overt and often offensive sexual desire, and I blinked once, she arched her eyebrow.
She continued this test for a little while until she finally pronounced, “That’s really excellent, Belinda, your reading skills are very advanced for someone with your condition and experience. I would have expected you to score at a fifth or sixth grade reading level, but you’ve far surpassed that level. Okay, let’s see if your abstract reasoning is well abov
e average, then we can move onto your math skills. I think we’ll skip the spatial imagery tests.”
For the abstract reasoning and math questions, she would go through the multiple choice possible answers one at a time to determine my skill level.
I didn’t particularly enjoy the math portion, probably because I wasn’t able to work through the problems like a normal person and I’d only made it through fifth grade math, so everything was new to me. She still encouraged me, even though I could tell that I didn’t get most of the answers correct. She assured me this was perfectly normal, given my physical limitations, but she still wanted a baseline assessment. Of course, most normal kids had a pad of paper and pencil to work through the problems on a scratch pad before selecting their answer.
After two hours, I think she could sense I was getting tired. She smiled at me and asked if it was all right to bring in my family to discuss the results.
I thought I’d done an adequate job of proving that locked deep inside there was still the essence of my intelligence.
I heard what sounded like raised voices and some kind of argument when the door was opened. A few seconds later Dr. Carter returned. “Belinda, your friend, Carly wants to join your family and hear the results. I need you to be honest with me and tell me, is this what you want? Do you want Carly to be here when I discuss the results with your family?”
I desperately wanted Carly to be there. After all, she was the one responsible for getting the testing arranged. I blinked once.
“All right. It’s a bit unconventional to have a non-family member sitting in, but I suspect this is a very unique situation and I want to respect your wishes. I’ll talk to your parents and let them know this is your preference and I recommend they acknowledge and respect that.”
She left the room and I sent up a short prayer, hoping they would be reasonable.
I was happy when everyone entered the room—including Carly.
Dr. Carter began her explanation, “I believe your daughter has a rare condition known as locked-in syndrome. The human brain is very complicated, but one fact that is clear to us, is that most human beings only use about ten percent of their brain capacity. Sometimes, when something occurs like a stroke or disease that affects the brain, comas or coma like symptoms are common and the path to what we consider normal activity is blocked. What makes recovery possible is that the brain looks for an alternate path. Your daughter is having to navigate a whole new way because the bridge is out and since the new road is unfamiliar, it will take a lot of time and hard work to get her limbs and verbal skills working again. Does this make sense?”
Everyone nodded and Carly blessed me with one of her amazing smiles. I could tell she was busting at the seams.
“Belinda is a very intelligent young woman. Her reading and comprehension skills are off the chart. She recognized and understood the meanings to most words well above her age level and certainly well above the age level of the onset of her condition. In addition, her abstract reasoning skills were also well above average for her current age. The area that will require additional work is with her math skills. If Belinda is planning on attending college, she will need to get tutoring in this area to bring her up to the appropriate level to pass a GED exam and enter college level math.
Both my parents stared at the doctor with a wide-eyed look on their faces—they appeared completely shocked.
Mom was the first to speak. “Are you telling me that you think Belinda has the intellectual capacity for college?”
Carly pumped her fist in the air and mouthed yes to me. Fran grinned and held up her thumbs.
“Why, yes, of course. Five minutes into the testing, this was apparent to me. The other work you will need to focus on is her physical abilities. Begin concentrated work on her arms and hands. This is usually the first priority. Once she regains the use of her hands, she will be able to use some of the assistive devices to help aide her in textbook learning. It is rare for people with locked-in syndrome to make a full recovery, but the incremental improvements I’ve learned about lead me to believe this is entirely possible for Belinda. I did some rudimentary testing, but my expertise lies more in the intellectual testing. I recommend intensive physical therapy and intensive alternate tutoring to help her regain those lost years,” Dr. Carter explained.
Carly couldn’t contain her joy and rushed into the conversation to add her two cents. “I could tutor Belinda in math if you want, Mr. and Mrs. Moore. I’m really good at math and I’ve tutored other kids. I’m not as good with my verbal aptitude, but I’m learning a new word every day to try to bolster my vocabulary. I’d like to help. My mom can recommend the best physical therapists for Belinda.”
My mom tossed Carly the first genuine smile that I’d seen in a long time. I think she may have been overwhelmed by the news, but after she allowed it to sink in for a few minutes, I’d like to believe she was proud of me and believed I could overcome whatever obstacles were in store for me—as it turns out there were a mountain of them.
“That’s very kind of you to offer, Carly. We may take you up on that, but I think our first priority is to work on Belinda’s ability to use those assistive devices Dr. Carter is referring to,” Mom responded.
“I realize that both of you have full-time positions, but I would also recommend moving Belinda from the rehab facility and back home. With some home care assistance, I believe you could make this work and she would be in an environment much more conducive to rapid recovery. Patients are more motivated to improve when they feel comfortable with their surroundings.”
Mom nodded. “I think now might be a good time to take a leave of absence. Thank you so much for your honesty.”
She looked to Dad. “Although I’ve been noticing improvement in Belinda’s motor functions, I was afraid to hope for too much. Now that I know the prognosis, I have no doubt Belinda will accomplish whatever she sets her mind to.” Mom looked at Evie and Fran. “No offense to you girls, because each of you have your own special talents, but Belinda has always been the most focused of the three of my girls. Her stubbornness has always been as much a blessing as it has been a fault.”
Dad puffed out his chest. “I’ve been blessed with three beautiful, intelligent girls and I plan on attending each of their college graduations. We are going to make this happen as a family.” Dad glared at Evie who lifted her head and nodded.
Dr. Carter turned her focus back on me. “Belinda, it has truly been a pleasure meeting you. I look forward to hearing about your progress.” She reached out to me and took my hand to shake it. I managed to move my arm and provide a small squeeze in acknowledgement of her parting comments. “Good for you, Belinda, you keep working on your arms and you’ll be using the computer in no time at all.”
I smiled at everyone. I was finally going to break out of my cage. This was a monumental turning point in my life and the person most responsible for this was Carly. How could I not fall deeply in love with her? I marked this day as the beginning of my new life—a life filled with both joy and heartache. There is a saying that a journey of a thousand miles begins with a single step. In my case, the journey began with the rolling of my wheels back out into the chilly drizzle of Seattle.
Nothing could dampen my mood, not even the rain. I managed to open my mouth, tilt my head back, and let the refreshing rain replenish my soul. Water can be a healing force. It can wash away the dirt and grime. It can sooth your aching muscles. Or, in my case, I envisioned the rain washing away the old limitations and pre-judgement, leaving me clean and ready to start anew.
Chapter Eleven
I will never forget the Christmas of 2008. The results at the neuroscience center weren’t the only Christmas presents I received that year.
Dad was in his glory that year, turning the bathroom closest to my room into something that would enable me to eventually shower on my own. Mom's family came from money, so it wouldn’t have been an issue to hire contractors to completely redo everything, but my dad lov
ed tinkering and do it yourself projects. His humble beginnings wouldn’t allow him to hire someone when he felt perfectly capable of handling it on his own. He didn’t need to engage in too many remodeling projects, because my childhood home was spacious enough to enable my wheelchair access to almost everywhere.
Carly managed to sneak away on Christmas day—probably to the chagrin of her family. She was welcomed with open arms into my family home. Mom started in right away inquiring about food.
“Carly, come in out of the rain. What a nasty day. I was hoping for a white Christmas. Are you hungry? We have a ton of leftovers. I can heat up a plate for you.”
Carly laughed. “Are you kidding me? All I’ve done all day is eat. I absolutely cannot fit another bite into my body. I swear turkey is trying desperately to escape through my pores because it has nowhere else to go.”
“No pie, then?” Mom asked.
Carly groaned. “Absolutely not.” Carly shook out her raincoat before coming inside. “I just came by to drop off Belinda’s gift.”
“Well, that is very thoughtful of you. She’s in the living room.”
Carly skipped into the living room. “Do you mind if we go to Belinda’s room to exchange gifts?”
Mom waved her hand. “Go ahead.”
Carly rolled me into my room and pulled out a small package wrapped in silver with a bright blue bow.
I looked at my dresser, where Fran had placed Carly’s gift prominently right in the center. Fran helped me pick it out and had it wrapped in a shiny gold paper with a big red bow.
Carly looked to where I was staring and giggled. “Is that my gift?”
I nodded.
“Oh, goody, I love presents, but first I’ll open yours for you.”
Carly carefully unwrapped the silver box. She pulled out a leather friendship bracelet with a silver hummingbird connecting the leather in the center.