Mckay's Room Monologue
I followed McKay as she guided me through her ramped backyard to a door that accessed her bedroom directly. This was the one path that avoided stairs. This was the only path that her wheelchair could safely take to get to her room.
The second we entered her bedroom I felt a sensation of peace. It was coziness and comfort personified. The twinkling Christmas lights strung from wall to wall softly poured a gentle white glow over the whole room. A sweet, yet subtle floral aroma drifted through the air. The room was equipped with everything McKay needed to make it through the day without leaving her isolated haven. The corner held enough instruments to qualify her room as a miniature music store. Sheet music and lyric papers covered the surface …show more content…
of her electric keyboard. The west wall showcased an old-fashioned vanity set, complete with an elegant mirror and small pull out drawers. The low-set counter was slightly cluttered with hair bands, brightly colored gel pens, lotion bottles, sparkly nail polish, and a brush for her wavy, waist-length, chocolate brown hair.
“You mind helping me get settled?” she cautiously piped. “I don’t think my dad’s home yet, and my mom is probably busy with Cecily.”
15 minutes later, after much maneuvering, lifting, failing, and retrying, McKay was stable and ready to share her story.
“It was January 2nd [2018], and I was just hanging out with friends when my legs went bleh” she explained from the comfort of her bed. She told me how her left leg started feeling a sharp, burning pain. She tried to keep moving around, but her limp became so severe she was worried she would fall. She immediately got a ride home from her friend’s house. Only an hour later, the same pain attacked her other leg. By morning she couldn’t make them move. She would stare at them and tell them to move, but it was as effective as staring at the remote and trying to get it to come to you with Jedi-mind tricks from your place on the couch. Unfortunately, McKay couldn’t master her use of the force and get her legs to follow her mind’s commands. She has spent the last two weeks stuck in a wheelchair, missing school and desperately searching for ways to get her legs back. “But look--” she pointed down to the fuzzy, polka dotted socks which wrapped around her feet. When I paid close enough attention I could see the tips of her toes wiggle slowly, like caterpillars trying to climb a leaf. “I can move them now!” she exclaimed with pure optimism. Her wide smile rarely left her face during the course of our discussion.
McKay’s first health trials arose when she was only in 2nd grade. One day she came home from school crying. The young girl complained about terrible aches in her back. Mary Thompson wasn’t quite sure what to do about her distressed daughter; 7-year-olds don’t usually suffer from back pain. When McKay’s complaints failed to cease, her parents decided to get her in to see a doctor.
She was diagnosed with minor scoliosis and was advised to use a lumbar pillow when sitting in one place for a long period of time.
While McKay complied, the pain never faded away. She told me, “one time I remember sitting on a church pew, and my back hurt so bad that I started to cry, but I didn’t want to interrupt, so I just sat there, silently …show more content…
crying.”
As she went through elementary and middle school, several more unexplainable health issues plagued her.
The doctors suspected she had plantar fasciitis, causing terrible sharp pains in the arches of her feet whenever she had to stand for a long period of time. Later, her knee joints and ankles started aching like those of a 70-year-old woman. McKay told her parents about strange tingling sensations in her fingertips and toes. The list of symptoms grew every year, and with each new trial came another tentative diagnosis. However, no doctor could explain the cause of all of these health defects in such a young girl.
Around the same time, McKay’s mother was facing health scares of her own. In 2010 Mary Thompson was told she had Multiple Sclerosis (MS). She was told as her nerves degenerated, she would soon entirely lose her ability to function and only had around 10 years left to live. The young mother felt shattered. As she prepared to continue life in a wheelchair, she followed all of the doctor’s orders: take anti-inflammatory medications, get plenty of sleep, transfer to a high protein diet, etc. But then, a few months down the road, something miraculous happened: Mary could walk
again!
Doctors quickly retracted her MS diagnosis and started searching for an alternate medical explanation. After countless clinic visits and blood tests, Mary tested positive for Borrelia burgdorferi, the bacteria responsible for Lyme Disease.
Mary had been bitten by a tick while serving a church mission in Pennsylvania when she was 21 years old. Several years later, the Borrelia she had harbored for so long finally manifested itself through this terrible disease.
Suddenly, the entire Thompson family was hyperaware of Lyme. They only had the basic understanding; when a person is bit by a tick and a strange rash appears, there’s a chance that person has Lyme Disease and should be treated immediately. At the time, they had never heard of chronic Lyme Disease. Chronic Lyme disease doesn’t require being bit by a tick. The bacteria causing Lyme can pass gestationally and take years to cause any health issues. Once health issues do arise, chronic Lyme Disease is very difficult to diagnose because the 100+ symptoms of Lyme often mimic other diseases such as MS, ALS, Fibromyalgia, and Alzheimer’s.
After having so many unanswered questions, doctors decided to test McKay for Lyme. In the 6th grade, McKay was diagnosed with chronic Lyme disease, having gotten it from her mom during pregnancy. The bacteria passed from Mary to McKay through the placenta. According to Dr. Bill Rawls, a Lyme Disease specialist at West Clinic (the clinic in Idaho at which McKay has received her most recent treatments), chronic Lyme Disease is much more unique, rare, and difficult to treat than regular Lyme. It typically can’t be fought off with a month’s worth of antibiotics, because the bacteria has already spread to several other parts of the body.
McKay’s life was swallowed by countless treatment plans. “I remember at one point I had to take 25 pills a day…and I couldn’t even swallow pills at that time!” McKay’s eyebrows hunched down below her brown bangs as she recalled the unpleasant process. “I would put the pills in applesauce to choke them down.” It often took her three or four tries to get down a single pill. “To this day,” she said, her large, hazel eyes settled deep into mine, “I still can’t even look at applesauce without feeling nauseous.”
I’ve known McKay for the past eight years, so I’ve seen the entire range of her health. We became close through playing on the same soccer team. As her joints deteriorated, she slowly grew less and less active. It was like watching a person age at ten times the normal speed. First, she would sit out when it was time to run laps. Next, she was moved to play a defense position in games. Finally, she was placed in the goalie box where she played the most stationary position possible. I remember the last time she was able to run laps for our warm-ups at practice. Being the tough, stubborn girl that she is, she was determined to keep up with the rest of us. I stayed behind with her slow-paced jog, but I could see her grimace with every step. I told her it’s fine to take it easy, and that our coach would totally understand. But McKay refused to give up. She barely made it around the last corner, limping back like a wounded animal. She flinched as though she were being electrocuted with every step.
“I miss soccer sooo much” she ranted. “I miss so many things. I used to be super into exercising. I was a great runner.” She stopped to glare at her nonfunctioning legs. “Now I’m just a lifeless blob.”
In the 9th grade, when McKay’s Lyme symptoms got really bad, she turned to music to find comfort. She dove in and let it consume her. It was the most therapeutic thing she could find, and she just couldn’t get enough of it. Within two years, she had taught herself how to play piano, guitar, ukulele, mandolin, and harp. Even though her life seemed to be falling apart, she could find solace in her music. The angelic tones of the harp soothed her pains. Singing a ballad while pounding on the piano helped her release her pent-up anger she held against life.
McKay seemed to be filled with a new bursting light as she told me about her musical passions. All of the darkness which clouded in as we spoke of her tumultuous past was blown away by the sunbeams escaping through her crystal-clear voice. “I don’t think I would make it without music.” Music grounded her, and helped her find a new purpose.
Mary explained how McKay always wanted to be either an artist, a dancer, or a soccer player when she grew up. “It broke my heart to see her realize that she couldn’t pursue any type of physical career” Mary said with remorse. She always wanted her daughter to be able to follow her dreams. Watching her dreams be knocked down by health issues at such a young age was devastating.
In the fall of 2017, McKay first experienced the helpless feeling of losing control of her limbs. She was sitting in class when her right arm started to hurt with a pain she didn’t recognize. She was used to occasional tingling sensations, but this pain felt like “someone was holding a hot pan to [her] skin.” Her instincts told her to recoil, but there was nothing to escape from. The feeling came from inside of her.
“I felt so useless. I couldn’t do anything for myself. I couldn’t wash my hair, I couldn’t lift a cup, I couldn’t even blow my nose!” she recalled.
The most devastating part of losing the ability to move her arms was that she couldn’t play any instruments. As one of the hardest moments of her life struck, she lost her coping mechanism.
So now, as she sat in her bed, glaring at her useless legs, she expressed a hint of gratitude. However inconvenient it is to not be able to walk, she’s grateful it’s not her arms again this time.
A month after losing control of her arms, McKay and her mom traveled to Idaho where McKay was assessed and treated at West Clinic, the home of some of the nation’s leading Lyme specialists. The injections were awful. McKay spent two weeks being poked and pierced by sharp, long metal needles, having blood drawn and receiving injections. After what seemed like months of torture, McKay rejoiced as she willed her finder tips to dance resiliently through the air.
McKay’s family can’t afford to travel back to Idaho, so the Clinic is sending treatments to periodically inject into McKay at a local office. Hopefully, it’ll only be a matter of time before she can be back on her feet.
McKay has suffered more than any other 18-year-old I know. Yet she is still one of the brightest, most optimistic teenagers around. Near the conclusion of our interview, I prodded to discover her personal source of resiliency.
“How the heck are you so strong?” I questioned. “What keeps you going on your hardest days?”
After a brief moment of contemplation, she uttered her one-word answer: “People.”
McKay has an undeniable talent for seeing the good through even the darkest times. She finds something to love in every human being she encounters. She has discovered that the best way for her to feel happy is through making other people happy. “I love people. People are just so amazing!” She glowed with her optimistic love. “I want to make other people happy. I want to reach out to other people who are struggling through darkness.”
McKay is a light to everyone around her. Scrolling through her Instagram posts, nearly every comment left is along the lines of “You are so amazing!” or “Wow, I love you!” It’s clear that she has touched countless lives; I know that she has inspired me on many occasions. Regardless of the challenges Lyme disease throws her way, she refused to let her light dim.
“Hey,” she interjected with a chuckle, “when life gives you Lyme, make lemonade.”
The second we entered her bedroom I felt a sensation of peace. It was coziness and comfort personified. The twinkling Christmas lights strung from wall to wall softly poured a gentle white glow over the whole room. A sweet, yet subtle floral aroma drifted through the air. The room was equipped with everything McKay needed to make it through the day without leaving her isolated haven. The corner held enough instruments to qualify her room as a miniature music store. Sheet music and lyric papers covered the surface …show more content…
of her electric keyboard. The west wall showcased an old-fashioned vanity set, complete with an elegant mirror and small pull out drawers. The low-set counter was slightly cluttered with hair bands, brightly colored gel pens, lotion bottles, sparkly nail polish, and a brush for her wavy, waist-length, chocolate brown hair.
“You mind helping me get settled?” she cautiously piped. “I don’t think my dad’s home yet, and my mom is probably busy with Cecily.”
15 minutes later, after much maneuvering, lifting, failing, and retrying, McKay was stable and ready to share her story.
“It was January 2nd [2018], and I was just hanging out with friends when my legs went bleh” she explained from the comfort of her bed. She told me how her left leg started feeling a sharp, burning pain. She tried to keep moving around, but her limp became so severe she was worried she would fall. She immediately got a ride home from her friend’s house. Only an hour later, the same pain attacked her other leg. By morning she couldn’t make them move. She would stare at them and tell them to move, but it was as effective as staring at the remote and trying to get it to come to you with Jedi-mind tricks from your place on the couch. Unfortunately, McKay couldn’t master her use of the force and get her legs to follow her mind’s commands. She has spent the last two weeks stuck in a wheelchair, missing school and desperately searching for ways to get her legs back. “But look--” she pointed down to the fuzzy, polka dotted socks which wrapped around her feet. When I paid close enough attention I could see the tips of her toes wiggle slowly, like caterpillars trying to climb a leaf. “I can move them now!” she exclaimed with pure optimism. Her wide smile rarely left her face during the course of our discussion.
McKay’s first health trials arose when she was only in 2nd grade. One day she came home from school crying. The young girl complained about terrible aches in her back. Mary Thompson wasn’t quite sure what to do about her distressed daughter; 7-year-olds don’t usually suffer from back pain. When McKay’s complaints failed to cease, her parents decided to get her in to see a doctor.
She was diagnosed with minor scoliosis and was advised to use a lumbar pillow when sitting in one place for a long period of time.
While McKay complied, the pain never faded away. She told me, “one time I remember sitting on a church pew, and my back hurt so bad that I started to cry, but I didn’t want to interrupt, so I just sat there, silently …show more content…
crying.”
As she went through elementary and middle school, several more unexplainable health issues plagued her.
The doctors suspected she had plantar fasciitis, causing terrible sharp pains in the arches of her feet whenever she had to stand for a long period of time. Later, her knee joints and ankles started aching like those of a 70-year-old woman. McKay told her parents about strange tingling sensations in her fingertips and toes. The list of symptoms grew every year, and with each new trial came another tentative diagnosis. However, no doctor could explain the cause of all of these health defects in such a young girl.
Around the same time, McKay’s mother was facing health scares of her own. In 2010 Mary Thompson was told she had Multiple Sclerosis (MS). She was told as her nerves degenerated, she would soon entirely lose her ability to function and only had around 10 years left to live. The young mother felt shattered. As she prepared to continue life in a wheelchair, she followed all of the doctor’s orders: take anti-inflammatory medications, get plenty of sleep, transfer to a high protein diet, etc. But then, a few months down the road, something miraculous happened: Mary could walk
again!
Doctors quickly retracted her MS diagnosis and started searching for an alternate medical explanation. After countless clinic visits and blood tests, Mary tested positive for Borrelia burgdorferi, the bacteria responsible for Lyme Disease.
Mary had been bitten by a tick while serving a church mission in Pennsylvania when she was 21 years old. Several years later, the Borrelia she had harbored for so long finally manifested itself through this terrible disease.
Suddenly, the entire Thompson family was hyperaware of Lyme. They only had the basic understanding; when a person is bit by a tick and a strange rash appears, there’s a chance that person has Lyme Disease and should be treated immediately. At the time, they had never heard of chronic Lyme Disease. Chronic Lyme disease doesn’t require being bit by a tick. The bacteria causing Lyme can pass gestationally and take years to cause any health issues. Once health issues do arise, chronic Lyme Disease is very difficult to diagnose because the 100+ symptoms of Lyme often mimic other diseases such as MS, ALS, Fibromyalgia, and Alzheimer’s.
After having so many unanswered questions, doctors decided to test McKay for Lyme. In the 6th grade, McKay was diagnosed with chronic Lyme disease, having gotten it from her mom during pregnancy. The bacteria passed from Mary to McKay through the placenta. According to Dr. Bill Rawls, a Lyme Disease specialist at West Clinic (the clinic in Idaho at which McKay has received her most recent treatments), chronic Lyme Disease is much more unique, rare, and difficult to treat than regular Lyme. It typically can’t be fought off with a month’s worth of antibiotics, because the bacteria has already spread to several other parts of the body.
McKay’s life was swallowed by countless treatment plans. “I remember at one point I had to take 25 pills a day…and I couldn’t even swallow pills at that time!” McKay’s eyebrows hunched down below her brown bangs as she recalled the unpleasant process. “I would put the pills in applesauce to choke them down.” It often took her three or four tries to get down a single pill. “To this day,” she said, her large, hazel eyes settled deep into mine, “I still can’t even look at applesauce without feeling nauseous.”
I’ve known McKay for the past eight years, so I’ve seen the entire range of her health. We became close through playing on the same soccer team. As her joints deteriorated, she slowly grew less and less active. It was like watching a person age at ten times the normal speed. First, she would sit out when it was time to run laps. Next, she was moved to play a defense position in games. Finally, she was placed in the goalie box where she played the most stationary position possible. I remember the last time she was able to run laps for our warm-ups at practice. Being the tough, stubborn girl that she is, she was determined to keep up with the rest of us. I stayed behind with her slow-paced jog, but I could see her grimace with every step. I told her it’s fine to take it easy, and that our coach would totally understand. But McKay refused to give up. She barely made it around the last corner, limping back like a wounded animal. She flinched as though she were being electrocuted with every step.
“I miss soccer sooo much” she ranted. “I miss so many things. I used to be super into exercising. I was a great runner.” She stopped to glare at her nonfunctioning legs. “Now I’m just a lifeless blob.”
In the 9th grade, when McKay’s Lyme symptoms got really bad, she turned to music to find comfort. She dove in and let it consume her. It was the most therapeutic thing she could find, and she just couldn’t get enough of it. Within two years, she had taught herself how to play piano, guitar, ukulele, mandolin, and harp. Even though her life seemed to be falling apart, she could find solace in her music. The angelic tones of the harp soothed her pains. Singing a ballad while pounding on the piano helped her release her pent-up anger she held against life.
McKay seemed to be filled with a new bursting light as she told me about her musical passions. All of the darkness which clouded in as we spoke of her tumultuous past was blown away by the sunbeams escaping through her crystal-clear voice. “I don’t think I would make it without music.” Music grounded her, and helped her find a new purpose.
Mary explained how McKay always wanted to be either an artist, a dancer, or a soccer player when she grew up. “It broke my heart to see her realize that she couldn’t pursue any type of physical career” Mary said with remorse. She always wanted her daughter to be able to follow her dreams. Watching her dreams be knocked down by health issues at such a young age was devastating.
In the fall of 2017, McKay first experienced the helpless feeling of losing control of her limbs. She was sitting in class when her right arm started to hurt with a pain she didn’t recognize. She was used to occasional tingling sensations, but this pain felt like “someone was holding a hot pan to [her] skin.” Her instincts told her to recoil, but there was nothing to escape from. The feeling came from inside of her.
“I felt so useless. I couldn’t do anything for myself. I couldn’t wash my hair, I couldn’t lift a cup, I couldn’t even blow my nose!” she recalled.
The most devastating part of losing the ability to move her arms was that she couldn’t play any instruments. As one of the hardest moments of her life struck, she lost her coping mechanism.
So now, as she sat in her bed, glaring at her useless legs, she expressed a hint of gratitude. However inconvenient it is to not be able to walk, she’s grateful it’s not her arms again this time.
A month after losing control of her arms, McKay and her mom traveled to Idaho where McKay was assessed and treated at West Clinic, the home of some of the nation’s leading Lyme specialists. The injections were awful. McKay spent two weeks being poked and pierced by sharp, long metal needles, having blood drawn and receiving injections. After what seemed like months of torture, McKay rejoiced as she willed her finder tips to dance resiliently through the air.
McKay’s family can’t afford to travel back to Idaho, so the Clinic is sending treatments to periodically inject into McKay at a local office. Hopefully, it’ll only be a matter of time before she can be back on her feet.
McKay has suffered more than any other 18-year-old I know. Yet she is still one of the brightest, most optimistic teenagers around. Near the conclusion of our interview, I prodded to discover her personal source of resiliency.
“How the heck are you so strong?” I questioned. “What keeps you going on your hardest days?”
After a brief moment of contemplation, she uttered her one-word answer: “People.”
McKay has an undeniable talent for seeing the good through even the darkest times. She finds something to love in every human being she encounters. She has discovered that the best way for her to feel happy is through making other people happy. “I love people. People are just so amazing!” She glowed with her optimistic love. “I want to make other people happy. I want to reach out to other people who are struggling through darkness.”
McKay is a light to everyone around her. Scrolling through her Instagram posts, nearly every comment left is along the lines of “You are so amazing!” or “Wow, I love you!” It’s clear that she has touched countless lives; I know that she has inspired me on many occasions. Regardless of the challenges Lyme disease throws her way, she refused to let her light dim.
“Hey,” she interjected with a chuckle, “when life gives you Lyme, make lemonade.”