Book by isabella clements leedeman by Freestyle Academy

The Search for Normal My motherâ&#x20AC;&#x2122;s journey through life and illness

Isabella Clements Leedeman is a junior at Freestyle Academy and Mountain View High School. At school, she enjoys animating and drumming in marching band. She is a student that enjoys being creative and pushes herself to create things that she is proud of. Outside of school, she enjoys listening to music, playing drum set and spending time with family. She hopes to one day become a successful animator and musician.

Isabella Clements Leedeman

The Search for Normal My motherâ&#x20AC;&#x2122;s journey through life and illness

Isabella Clements Leedeman

I wrote this book in honor of my mother Laurissa Clements, who taught me to express my emotions through creativity.

Left: Laurissa smiling while on a boat (1996)

iii

This book would not have been possible without the editing assistance and emotional support of the people around me. I would like to thank my sister, Simone, for holding my hand through this entire process, while managing the production of her own book. I would also like to thank all of my teachers at Freestyle Academy, for being so supportive and encouraging me to take advantage of this opportunity to create. Finally, I would like to thank my family, helping me effectively manage my stress and offering support for this project with little background information on the project itself.

Left: Succulent from Laurissaâ&#x20AC;&#x2122;s garden

Table of Contents Preface - 9 Introduction - 11 Who is Laurissa Clements? - 13 A New Normal - 17 Unexpected - 25 Conclusion - 29 Works Cited - 31

Left: Laurissa on vacation at the Cayman Islands (1996)

Preface

hen I was first introduced to the Documentary project, I was very optimistic because I had just finished the Junior Narrative, my first big assignment at Freestyle Academy. I began brainstorming many different places and people with stories that I could potentially explore as the centerpiece of my documentary. During this critical brainstorming period, I entered into a state of emotional depression with the loss of one of my moms over the summer. Losing such an important figure in my life inspired me to tell her story and her unwavering battle through illness. During the production process, I was faced with several challenges: learning to work through my raw emotions, juggling three large assignments from each of my classes, and battling the fear of not depicting my motherâ&#x20AC;&#x2122;s story with the accuracy that it deserves. After weeks of agonizing over the thought of addressing these raw emotions through writing, I decided to begin with the research portion in order to steadily build up to the more emotional parts of the writing.With each step taken towards the accomplishment of this demanding project, I found myself making slow but steady progress. I believe I developed as a writer when I realized that I can only produce effective writing at my own pace. I created this book in order to preserve my motherâ&#x20AC;&#x2122;s memory, and to educate the reader about the many different parts of her life.

Left: Succulent and necklace with Laurissaâ&#x20AC;&#x2122;s wedding ring

Laurissa with me and my sister, (2009)

Introduction

ay of 2009. I was eight years old. The house was cold compared to the warmth of my bed, but I knew I had to get up and start my day. I walked out of my room and was greeted by my mommy, Laurissa, singing and the smell of french toast filling the air. She kissed my head and continued to her room to get dressed while my sister and I ate. On my way back to my room, I peeked in my mothers’ room and saw Laurissa sitting on the trunk at the end of her bed, crying while talking on the phone. I quietly observed and realized it wasn’t her normal “happy cry.” She was really upset and she kept staring at her foot. I tiptoed into the room and I heard my mama, Joyce, on the line. After listening for a little longer, I finally understood. Laurissa was explaining to Joyce that she couldn’t flex her foot at the ankle. I knew she always had issues with her knees, but I never knew she had issues with her foot too. My mom rushed home from work and I stayed home from school. I sat in the living room with my sister while my moms spoke with each other and made several phone calls trying to figure out the cause. After many appointments to different doctors, we were told that she had Lyme Disease. My mother’s battle with this disease is important to explore because her experience

is just one example of the unknown danger associated with this disease. The definition of Lyme disease, according to the Merriam Webster dictionary, is “an acute inflammatory disease that is caused by a spirochete (Borrelia burgdorferi) transmitted by ticks (genus Ixodes and especially I. dammini), that is usually characterized initially by a spreading red annular erythematous skin lesion (bullseye rash) and by fatigue, fever, and chills, and that if left untreated, may later manifest itself in joint pain, arthritis, cardiac and neurological disorders.” If the tick bite is left alone without treatment, Lyme disease could escalate to a chronic condition, which is both more problematic and the condition that my mother experienced. A simplified explanation of this disease is: chronic Lyme occurs when a person who’s treated with antibiotic therapy for the disease continues to experience symptoms. The condition is also referred to as persistent Lyme disease or post-treatment Lyme disease... These symptoms can include fatigue, joint or muscle aches, and cognitive dysfunction along with many others”(Choi). This information can help people prevent the transmisson of Lyme disease and provide guidence to navigate through this illness. 11

Who is Laurissa Clements?

Above: Laurissa with her mother and father Right: Laurissa as a baby

eptember 1st, 1964 – Laurissa Clements was born in faced with the choice of attending these trips or spending time Evanston, Illinois, as the only child of her mother and at home alone, forcing her to be independent at a very young father. At the young age of three, her parents filed for age. divorce. Joyce Leedeman, her wife of 23 years, recollects, Laurissa graduated from high school and attended “her dad lived in Sweden and her mother lived in Chicago. Loyola University in Chicago, studying corporate benefits So, being the product of a divorced family and an only child and insurance. After graduating with her Bachelor of the was very difficult. In one household, she Arts in 1989, she began working at the got a lot of things and was spoiled, and, Hyatt Hotel in the Rocky Mountains as in the other household, her one parent the Human Resources Director. Shortly didn’t have very much so it was two very after, she moved to Palo Alto to be closer “She was very outgoing, different households” (Leedeman). Her to her father and started work at the Hyatt loved to talk, and very father, David Clements, was an extremely Rickeys. social. She lived her life successful business partner with a large After completing two years of work at by creating experiences accounting company called Arthur the Hyatt Rickeys, she moved on to work as for other people, friends, Anderson. Although David traveled to a Human Resources Director at a company and relatives” a variety of places and worked often, he called Cupertino Electric in Sunnyvale. still made time for his daughter, whether Here, she met the love of her life in June that meant spoiling her with gifts or trips of 1994. When describing Laurissa’s - Leedeman to various different destinations around personality, Joyce recalls, “she was very the world. Alternatively, her mother did outgoing, loved to talk, and very social. not pay much attention to her, starting She lived her life by creating experiences with physical distance instead of coddling due to her mother’s for other people, friends, and relatives” (Leedeman). The two postpartum depression. As the years past, Laurissa’s mom became good friends and soon after started dating. After one prioritized time spent with friends or other suitors, rather than year, they decided to move into a house together in San Jose. time spent with her own daughter. In a document written for her doctor, Laurissa journaled, The limited time that she spent with her mother eventually “Joyce offered to support me so I could quit my job as Human decreased even further in junior high school when her new half- Resources Director of Cupertino Electric. Unhappy – I brother was born with Crouzon syndrome, a genetic disorder discovered I had been living my life for others and not for me. characterized by the premature fusion of certain skull bones. Embarked on emotional healing” (Clements). Inspired by Frequent trips to the doctor’s office meant that Laurissa was this revelation, she left her job as a HR Director and entered 13

a period of self-discovery. She went to therapy to heal from her childhood issues stemming from being neglected by her mother, learned how to make jewelry, and attended trade school to learn massage therapy. She then worked as a massage therapist in several different locations and spas. In 1995, my moms worked together to open a commercial electrical contracting business called Generation Electric. Joyce’s niece, Melissa Hill, worked at this business when she was in high school, and spent a lot of time with Laurissa, which marked the beginning of their friendship. In my interview with Melissa, she described what made Laurissa happy: “Family made her happy. All things outside made her happy. Other people feeling good made her happy. She was a happy person all the time, truthfully” (Hill). About four years into Joyce and Laurissa’s relationship, the conversation about having kids was becoming more and more serious. Joyce had achieved all of the things she wanted to do in her life, but the most significant goal left unachieved 14

was having children. However, Laurissa did not have a plan due to the fact that her life was never stable enough to allow her to think far into her future. They came to the conclusion that Joyce would be the first one to conceive through artificial insemination. After one miscarriage and a year and a half of trying to concieve, Joyce gave birth to my sister and me on January 19th, 2001. During the first year of our lives, Joyce went back to work due to financial demands, while Laurissa stayed home and raised my sister and I. In my interview with her, Joyce explained, “what made my wife happy was family time. She really enjoyed time with the kids and spending time together we would always do things as a family” (Leedeman). In 2002, Laurissa came to the conclusion that she was ready to carry a child. My moms had tried many times, ultimately depleting the sperm donor’s specimen that was used for my sister and I. After several failed attempts and having only the choice of choosing another sperm donor, my moms decided not to continue trying to concieve. In June of 2003, “Family made her Laurissa was watching happy. All things my sister and I when she outside made her received a phone call. It happy. Other people was from her father’s feeling good made her third wife, Diane. happy. She was a happy She told my mother person all the time, that she had taken all truthfully” the money out of her - Hill husband’s account and left enough to pay the

utilities of their house. As a final remark, she informed Laurissa of her father’s death and abruptly hung up the phone.This unexpected tragic news of the loss of her loved father further damaged Laurissa’s mental health. Around this time, Melissa would help Laurissa by watching my sister and I and by doing daily household chores. Melissa described Laurissa’s day during this time period as, “organized chaos. She tried to fit everything into one day. Mornings weren’t her thing, that was Joyce’s thing. She lived for the afternoon, the middle part of the day was the time of day that she loved the most. Always started off with her daughters and ended with them. She never really had a set schedule, I remember that there were always things she remembered to do throughout the day. But, she would be happy if she could accomplish one thing” (Hill). In 2004, my moms came to the conclusion that they wanted to move from San Jose to Mountain View because of better opportunities in education for their daughters. Once we moved, my sister and I began elementary school and eventually Laurissa decided to work there in order to be closer to us. In my interview with Joyce, she described “Laurissa’s typical day would start out with getting the girls ready and taking them to school. She’d spend the day there helping. She would be there for the end of the day when the girls would get out of school and

they would come home. Then we would have dinner together and have family time” (Leedeman). This was the routine our family had developed. Until one morning, Laurissa couldn’t move her foot and everything began to change. Melissa recalled noticing the symptoms, “around 2009 ish. She just didn’t seem herself, it’s almost like her vibrant self was lost and I knew that just actually by talking to her. It started with her and I having a conversation and usually she had a pretty witty response. But she could not remember what topic we were talking about first of all and second of all when she came up with a solution or kind of giving me a direction it had nothing to do with what we had talked about originally. Her thoughts, although chaotic, they were not like that” (Hill).

Left page : Laurissa working as HR director at Cupertino Electric (1994) Left: Laurissa’s 40th birthday party with Melissa (2004) Above: Joyce smiling at Laurissa holding her cat (1994)

A New Normal

etermined to figure out what was wrong with Yale, produced the first definitive account of the infection. Laurissa’s foot and mental state, my moms scheduled The symptoms had been originally thought to be an outbreak many different doctors appointments in hopes of of Rheumatoid Arthritis in and around Lyme, Connecticut. solving the mystery. Joyce recollects, “the doctors attributed If not treated promptly or correctly, these small symptoms a lot of it to stress, and told her she should look at destressing. could grow into a long-term, debilitating disease. She ended up going to a neurologist. The neurologist sent her Chronic Lyme disease is very easy to contract because the to an infectious disease doctor. That practice ended up hiring small-sized tick bite can go unnoticed and the symptoms can another physician that came from back East, he recommended mimic many other diseases resulting in delayed diagnoses that she get a Lyme test done. Her infectious disease doctor and treatment. Dr. Green explained, “The patient can get said he has already run the test three times and it had come bit and not know it because they don’t see the tick. A tick back negative. The new doctor said run it again because she is as small as a poppy seed when it latches on and as big as has Lyme disease. Sure enough, her test a sesame seed when it drops off. Only came back positive. Then they referred 26% of people who see the tick get the her to Dr. Christine Green, who is really disease. If you get more than one bug or “The patient can get bit and prominent in the Lyme disease world, and if the bite is missed, you could go on to not know it because they she started treating her” (Leedeman). get what you call chronic Lyme disease, don’t see the tick... Only Dr. Christine Green is a recognized or persistent Lyme disease. That means 26% of people who see the leader in the diagnosis, treatment, the patient was treated, but the disease tick get the disease.” and education of Lyme disease. In my persisted or came back in spite of that.” interview with her, she explained the Medical textbooks commonly indicate - Green many different symptoms that someone that Lyme disease is easy to treat. Three could have: “Acute Lyme disease, as weeks of an antibiotic like Doxycycline opposed to chronic Lyme disease, can and you’re supposedly cured, yet just be one bacteria infecting a person through the bite of a many people treated for Lyme disease have symptoms tick. So what does that look like? A viral type of nondescript that persist or appear even after antibiotics are finished. infection: you might get a low fever, achy, you might get A study at John Hopkins University found that six months what’s called peripheral neuropathy which means you would after Lyme treatment, 36 percent of patients reported newget numbness, tingling kind of moving around your body, onset fatigue, 20 percent reported widespread pain, and 45 you might get a headache and if treated promptly, there is a percent had neurocognitive difficulties(Schwartz). These good chance that all you have is Lyme disease. The problem baffling post-treatment symptoms were associated with a is, ticks are dirty. They have a whole lot more than Lyme significant impairment of life functioning. Post-treatment in them. They carry bacteria, they can give you some virus, Lyme symptoms are common and represent a major public and they can give parasites” (Green). Lyme disease was health problem. Great controversy surrounds the existence discovered in 1977 when Allen Steere, a rheumatologist at of chronic Lyme disease and Dr. Green has experienced this 17

Laurissa eating a peach at the beach (2010)

problem first hand. She states, “in the mid 90’s I would say get irregular heart beats or chest pain. It can go in muscles. a political difference happened in the medical community But really it could go anywhere. It’s called the second great where people thought there wasn’t any chronic Lyme. They pretender, the first great pretender was syphilis. Both thought those people who remained ill after Lyme had syphilis and Lyme love the brain and the neural-tissue and something called “post Lyme disease syndrome” and that if you infect the brain you can have any symptom coming up. there wasn’t any infection, there was just an autoimmune Anything at all. You could be depressed, you could be anxious disease. So when that happened, I used to send the very sick you can get new onset panic attacks.” Symptoms of chronic people to the infectious disease doctor and they would treat Lyme significantly overlap with those of chronic fatigue, them. Well, they quit treating them and they would send fibromyalgia, rheumatoid arthritis, multiple sclerosis, them back to me saying ‘Nope they don’t have Lyme, they Parkinson’s disease, ALS, depression, and Alzheimer’s have fibromyalgia, or you figure out what they have so at that disease. These mimicking symptoms lead to issues in point, I went to the medical literature deciding on an accurate diagnosis. In because I thought I had made a mistake 2009, the Center of Disease Control or that I didn’t understand something, and Prevention (C.D.C.) reported “In 2009, the Center but I decided no that wasn’t what was 38,000 cases, three times more than of Disease Control and going on” (Green). Even within today’s in 1991. Most researchers agree that Prevention (C.D.C.) medical field, there is still a debate about the true number of infections is five to reported 38,000 cases, whether or not Chronic Lyme is real, ten times higher. One of the reasons three times more than in and people like Laurissa struggle to be is because many who have Lyme are 1991.” treated properly due to the ignorance actually misdiagnosed. - Green of certain doctors. This gave the initial After accumulating all of the acute Lyme disease time to advance and symptoms, the process takes place. The slowly take control of her body. doctor will check all possible combinations of the symptoms Why did Laurissa’s results from the Lyme disease test in order to insure the patient will be properly treated. Dr. come back negative twice? There are many different factors Green walked me through the process of diagnosing a that contribute to these results including misdiagnosis due patient: “The chronic or persistent Lyme patients would to symptoms imitating other diseases. Dr. Green describes, come in, having been sick for years. Over those years, you “Chronic Lyme disease is a much more complicated illness, can almost see the bacteria move from system to system. For where people can get symptoms in any system of the body. example, maybe it began with their stomach and everyone They can get joint pain or joint arthritis. They can get thought it was irritable bowel, maybe even I would have neurological problems, which can be cognitive problems, thought that at the time. Then maybe they start getting for example they can’t walk straight. They can look like they headaches and they have never had headaches. Then their have Parkinson’s disease or multiple sclerosis. People can get sleep is disrupted. Then their ankle hurts or their knee hurts Lyme in the heart or in the heart conduction system so you but they were playing sports so maybe it was related to that. 19

Joyce filling out paperwork at doctors appointment

Then what a doctor does is they put all those symptoms together and they think, what could cause this? What should I check out? The doctor makes a differential diagnoses, they say this could be these ten things. I was trained to choose the most dangerous to rule out first and second you choose the most likely. There are very few things that can cause so many symptoms. Once you do the history, then an exam, you sometimes find things in the exam that lead you down one road or another. Then you go to test. The test either confirms what you think is happening or you have to go to the next thing on the differential.” A common misconception in the diagnosis of Lyme disease is the belief that the result of a test will determine exactly what you will be treated for, however that is not the case. According to Dr. Green, “A diagnosis isn’t made just by a test. There are exceptions to that. Sometimes people have strep in their throat but they aren’t sick. So do they have strep throat? No, they’re a strep carrier. In the same way Laurissa’s tests said positive or negative, that doesn’t make the diagnosis of Lyme. There are exceptions. There are tests that can confirm that Lyme is present and active, but there are no tests that can tell you that Lyme is not there. Fortunately, there’s a lot of work being done in trying to find a real test for Lyme. It’s a smart bug. It hides, it’s not in the blood, it’s in the tissues.” In other words, it is a difficult disease to contain and slow down. After finally getting diagnosed with Lyme, Laurissa’s symptoms progressed rapidly. Dr. Green recalled, “Laurissa was on the sickest of the spectrum, she clearly had a neurologic infection. It was in her brain and it was in her spinal cord. She also had tremors and mood lability. You don’t always see those two things together. She got hit in two areas of the brain really hard.” In January of 2011, her symptoms included: tremors, insomnia, hallucinations, memory loss, muscle pain and weakness, speech slurring, fatigue, stiffness

and cramping of muscles, and difficulty walking with left side weakness. Each day the severity of these symptoms would change, but it continued to affect her daily life. Melissa had just quit her job because of poor management so, my mothers decided that she could help Laurissa with day-to-day tasks and help around the house. In my interview with her, she recalled how the disease changed Laurissa throughout her years of caring for her. “People, outsiders and close family members wouldn’t notice it off the bat. There was weight loss, that was the first thing you could see that was dramatic. She liked to call herself a ‘fluffy person’, then she started to lose weight and people would think ‘Oh Laurissa you’re exercising a lot, you look great!’, when in fact that wasn’t what was going on, as we know now her body was deteriorating. The second thing, I think one of the most memorable for me, was the fact that she just wasn’t herself functionally. She lost the ability to do any day to day tasks. She was an extremely smart person, intelligent woman and that got affected pretty quickly she wasn’t able to recall certain things, she wasn’t able to complete things even with a lot of effort. Then there came a point where it kind of plateaued” (Hill). During this plateau, Laurissa was very uncomfortable in her own skin. All of the things 21

she loved to do became more challenging every day. Before the disease, she was an extrovert and loved being social, but the symptoms of the disease made speaking and arranging coherent thoughts a daily struggle. She began to lose connections with people she was once close to because the illness made them uncomfortable. She would try to become more connected with her family, but even that started to deteriorate over time. My sister and I became caregivers instead of daughters. I remember being in 3rd or 4th grade when Laurissa taught me how to tie my hair up by myself. Shortly after, this became a daily routine: I would put my hair up then make my way to the living room, climb up on the table and put my mother’s hair up, because reaching behind her own head became a challenge. As her symptoms became more severe, one of the biggest

Joyce and Laurissa (2015)

obstacles she faced was rigidity of her muscles. It’s more official name being, Herxheimer reaction or a herx. This occurs when the immune system is attacking the infection, which creates inflammation wherever the bug is located. For example, if you already had a hard time walking, when you herx, it could become much more difficult. When Laurissa would herx, her muscles would flex and not relax for long periods of time which would lead to cramps and intense fatigue. The only thing that seemed to reduce the pain was various different types of muscle relaxers and medication. Joyce recalled, “We had to write out a full schedule and start obsessing as to when she had to get her medication in order for her to feel better, for her to feel comfort because in the long run what ended up being tremors resulted in rigidity. Rigidity of her muscles in her arms she used to say it was like holding two really big jugs of the water in your hands and extending your arms fully. That’s what her muscles felt like because they were contracted all the time” (Leedeman). As Laurissa’s symptoms worsened and herxing became a daily battle, Melissa would tend to her while my sister and I were at school and Joyce was at work. She made sure Laurissa stuck to a schedule every day. Melissa described, “Our day to day required me dropping my children off at school and coming here. I would cook breakfast for her, sometimes it would be something really bad for us that we knew we shouldn’t eat, but Laurissa loved food. Then I would get her in the shower and I would get her changed. After that she would be pretty pooped so I would try to give her a nap. I would clean up around the house, set up her medication because that was always something that consumed our days there was always a medication. Then there would be physical therapy and after there was usually another nap. Then, more medication and food. Around that time the girls were getting home and Joyce would be arriving, and I would be thinking about

dinner. Everyday was kind of different because our schedule with her had to coincide with the family’s schedule so it was either me staying here to cook dinner for you guys or getting everything ready for Joyce to make dinner. While I did that I also had to make sure that she was okay because if she had to be left alone for a short period of time I needed to make sure that it was safe to happen. Then it would just be getting prepared for the next day to do it all over again” (Hill). On the rare occasion Melissa had to leave early or couldn’t watch Laurissa, things would become more difficult to manage. The illness was slowly stripping away her independence and her ability to do daily tasks. In fits of frustration, she would try to do things by herself and regain her independence. However, these acts of rebellion would put her in danger. She would get irritated at her inability to walk. As the illness took hold, she would have to use different aids in order to get around, starting out with a family member then eventually needing a walker and finally a wheelchair. Consequently, she would try to walk around without any aid, only using the wall, tables and countertops to keep her balance. This led to her falling and sustaining injuries due to her inability to brace her fall, then being unable to get up by herself. Often my family would come home from an extremely brief outing or check on Laurissa after leaving her alone for a little while, only to find her on the floor. Other times, she would express disappointment that she could not care for my sister and I as she used to. In order to make up for it, she would try to make food in the kitchen and in doing so, she would put herself in danger by forgetting she left the stove or oven on, or she would fall in the kitchen. These decisions would lead to animosity in the house because from Joyce’s point of view, Laurissa was consciously making these dangerous decisions without thinking of the consequences.

After using oral antibiotic treatment, Laurissa needed a higher doseage. In 2015, she switched to using a Peripherally-inserted central catheter (PICC line) in her arm as a method to receive antibiotic treatment. In December of 2016, Laurissa had to stop antibiotics due to a gramnegative infection in her port. This was extremely dangerous because the PICC line went directly to her heart so luckily the doctors caught it in time. However, any gains that we had made against Lyme disease had now been lost due to stopping treatment.

Unexpected O

ver many years of treatment and medication, her symptoms didnâ&#x20AC;&#x2122;t seem to improve. In fact, they became more severe. She was unable to move freely no matter how much physical therapy she underwent. Eating became more challenging, as she struggled to swallow and to chew without getting fatigued or choking on her food and saliva. Although she tried to do mouth exercises in order to become stronger, her situation had become too dangerous. She had lost too much weight. Before the disease, she weighed around 230 pounds, and close to the end, she weighed only 82 pounds. In order to intake a healthy amount of nutrients without putting herself in danger of choking on the food or her saliva, she was given a gastrostomy tube, also known as a feeding tube. The disease ate away at each of her rudimentary human abilities, the final ones being the ability to speak and breathe.

Throughout 2016, my mother slurred her speech and though her speech therapist tried to guide her through exercises, it failed to slow down the illness fully preventing her from speaking coherently. When she became completely unable to speak, she used a piece of paper with letters to point and spell out words. However, being the intelligent woman that she was, she never used small words to convey her message. When she began having issues swallowing, we were concerned about her aspirating, in other words, inhaling foods or liquids. This would lead to bacteria growth in her lungs, eventually giving her pneumonia. Despite our precautions, she developed pneumonia. Her breaths were very labored and short, and she struggled to get full breaths of air. This lead to her dependency on an oxygen tank. On July 13 of 2017, Laurissa Clements passed away peacefully in her sleep at the age of 52 years old. This was a jarring end to a life that wasn’t finished living. I found myself grappling with the most difficult questions: If she continued to live with machines and people doing everything for her, is that really living? And, was it selfish of me to want her to live longer for me and for my family? Melissa recalled what changed and what stayed the same throughout her illness: “Physically her body had changed completely. The only thing that stayed the same was her love for everything and for us. She was always thinking of others and putting others first and that actually maintained all the way through. In fact the person that she physically was when she left us didn’t reflect the person that she was

inside of her. The only thing that stayed besides her love was her eyes. They were always still there beautiful and green” (Hill). The illness changed every aspect of Laurissa’s life and it created a major shift in our family’s day-to-day life and that schedule we maintained for nine years came to an abrupt end. Joyce recollected, “We slowly evolved into being caregivers and shifting our schedule. It’s kind of bittersweet because we know she’s not in pain. Our life has changed but it also feels like it’s stopped because now you come home. The house is empty and quiet. Trying to think of what to do during the weekend because you know the weekends and the weekdays and the evenings were always pre-planned because it had to revolve around the medication schedule and what she was capable of doing and not capable of doing. It’s acclimating and re-acclimating. We miss the person she was prior to her illness because the illness started becoming her identity and that wasn’t who she was in her heart” (Leedeman). Melissa is still experiencing the change in her routine. She explains, “When you get used to doing something every day, you get used to a normal. It shouldn’t have been normal, but it was our crazy normal. It’s hard for me I mean there is no sugar coating about it. I don’t want to be filling my day with other things I would rather fill it with her” (Hill). Serving as a caregiver for nine years you can expect the symptoms that the disease caused and how the medications affected but we continue to ask how the disease became so severe and what else could we have done to prevent it from escalating the way it did? 25

Above: Joyce and Laurissa in the rose garden July 9, 2017 Right: Laurissa with my sister and me taking pictures for our first christmas at the rose garden( 2001) 26

September 1st, 1964: Laurissa Clements was born

1989-1991: Worked as human resources director of Hyatt hotels

2001: My sister and I were born

1995: Moved in with Joyce Leedeman

1967: Parents filed for divorce

1994: Met Joyce Leedeman while working at Cupertino Electric 1986: Graduated from Loyola University in Chicago, Illinois

2016: PICC line had gram negative infection, had to stop antibiotics

2003: Father passed away

2009: Began displaying symptoms 2002: Tried to concieve 2011: Symptoms escalated despite treatment July 13, 2017 Laurissa Clements passed away

Conclusion

l‌ though Laurissa’s life was cut short, one of her final wishes was to continue her legacy through helping others in similar situations. Sadly, she could not donate her body to research due to her pneumonia and her weight. The goal of this book is to continue her legacy through telling her story and educating others on the unknown dangers of chronic Lyme disease. Becoming educated about this disease is crucial today because Lyme disease is pandemic and can be contracted by anyone. Dr. Green explained, “You don’t just get Lyme disease when you walk in the woods. You can get it in your backyard when you’re gardening, or when you are kicking a soccer ball around. In the Sonora area in California, 8 of 10 squirrels are infected with Lyme disease. And they all get ticks. There really are ticks all over.” Green continues, “The Center for Disease Control (CDC), in 2015 noted that they had underestimated the amount of new cases of Lyme a year. It’s not 30,000. It’s 300,000. If you look at states in the nation, 50/50 states, have found ticks with the Lyme bacteria in them in their state. Some states have more ticks infected with other tick-borne infections than Lyme. Those are important too... [because] chronic Lyme almost always is more than one disease.” Green is not suggesting that you should avoid going outside. However, you can easily prevent this illness from occuring by using bug spray and, after spending time outside, making sure you check your body for ticks. It is important to educate the public about Lyme disease in order to prevent a situation like my mother’s, where the illness unfortunately affected my family as much as it did. No one should have to suffer and battle this illness for as long as she did, and now that we know how to prevent contracting Lyme disease, we can move towards finding a cure. My mom sadly lost her life, but that does not mean anyone else should have to.

Left: My mother and I (2013) 29

Works Cited Green, Christine. Personal Interview. 27 March 2018. Hill, Melissa. Personal Interview. 12 March 2018. Leedeman, Joyce. Personal Interview. 14 February 2018. ---. Personal Interview. 15 March 2018. “Lyme Disease.” Merriam-Webster, Merriam-Webster, www.merriam-webster.com/dictionary/Lyme%20disease.Accessed 7 Mar. 2018. “Lyme Disease: Introduction to Symptoms, Diagnosis and Treatment.” LymeDisease.org, www.lymedisease.org/lyme-basics/lyme-disease/about-lyme/. Accessed 7 Mar. 2018. “Lyme Disease.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 1 Dec. 2017, www.cdc.gov/lyme/postlds/index.html. Accessed 7 Mar. 2018. Schwartz, Brian. “Lyme Disease Treatment Information from Johns Hopkins Medicine.”Arthritis Information, 31 July 2017, www.hopkinsarthritis.org/arthritis-info/lyme-disease/lyme-disease-treatment/.Accessed 7 Mar. 2018. Specter, Michael. “The Lyme Wars.” The New Yorker, The New Yorker, 4 Sept. 2017, www.newyorker.com/magazine/2013/07/01/the-lyme-wars. Accessed 7 Mar. 2018.

The Search for Normal My motherâ&#x20AC;&#x2122;s journey through life and illness

Isabella Clements Leedeman