Bite Me, page 18
twenty-two
STRAIGHT TO THE HEART
“Approximately 10 percent to 15 percent of people who are treated for medically documented Lyme disease develop persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.”
—NEW YORK TIMES
For the most part, I didn’t involve my mother with my doctors’ visits and the Lyme carousel I was on. She was still raising children (my two younger sisters) and running a company. She was also then in a weird place because of her separation with my dad.
But I love my mother dearly. She is a truly amazing and insightful woman. Being around my mom is like being around a fairy child, a female Peter Pan, if you will.
Mom has a way about her. You cannot resist her or her charming demands.
I think I was about eleven years old when my mother strongly suggested that we take a trip to Lourdes, France. My mother is very spiritual, as I have explained, and her spirituality covers a large spectrum. When my mother told Sister Sheehan (the flying nun who raced me to the ER when I had the noodle stuck up my nose) that we were going to Lourdes, Sister Sheehan exclaimed, “No! You can’t do that! You must be a part of a pilgrimage!” My mother responded with a quiet, confident answer, “Well then, I suppose it is in God’s hands.” And it was. Apparently, Mother Mary had appeared in Lourdes about eighteen times. It is a healing place, and there is a hospital for the mentally and physically disabled there. Somehow, my clever mom managed to get us a volunteering gig at the hospital.
So, one very hot summer day, off we went on this pilgrimage to France.
Lourdes is in the foothills of the Pyrenees Mountains. We were driven up a set of windy roads that led to a small classic French town with a church in the center. We stayed in a hostel run by a plump, homely, older woman who showed us to our little room. The accommodation included two small, single beds clad in artichoke-colored blankets, a shower fit for Tinker Bell, and a tiny toilet. The sink stood like a birdbath in the middle of the room away from the toilet or shower. Very European. My mother wasn’t impressed. She took one look at the room and let out a little gasp, after which she held her breath with her cheeks as large as balloons.
“Well,” she said with an exhale, “at least the color story in here is mustard,” which, according to Mom, is “very chic, very Lanvin.”
I plopped on the little bed and opened a book I was reading. Although I can’t recall the title, I do remember is was a bit racy for my age. The heroine of the story had married a mean man who “wouldn’t stop bothering her on their honeymoon,” events that would leave her in pain afterward. I really didn’t understand it at first, but when I finally got what they were talking about I felt embarrassed and hid the book from my mom—but I kept reading when she wasn’t looking.
Anyhow, the next day, after a few bland meals in our room, we ventured into the hospital, where two small, thin older nuns in interesting blue habits met us. They showed us around the hospital and in broken English explained what our daily duties and hours would be. The head nun called me “Une Petite,” aka “Little One.” Our job was to change soiled and wet sheets on the patients’ beds. Distracted, I tried very hard to not to show the shock I was experiencing. I think I might have even begun to cry a little when I saw the all the people in wheelchairs, most of whom seemingly had little brain activity at all.
Still, my mom and I stayed chipper and chatty with everyone who worked there and especially with those poor residents of the hospital. Why not bring a little warmth and human interaction into their lives?
“Madam, Une Petite,” the old head nun began, “s’il vous plait, you may no speak wiz za patients.”
Mom and I started to giggle like Lucy and Ethel from I Love Lucy. Not a smart move.
“I am afraid I weel af to move you and Une Petite to za kitchen,” said the nun, “for za cooking of za lunch an dinner.”
Which sounded just fine to me. Cooking in a French kitchen or changing soiled sheets? Not really a toss-up, except that the nun didn’t mean that we would be cooking anything. What she meant to say was that we were going to clean off the tables and then wash the dirty dishes.
So off Lucy and Ethel went to zee kitchen.
In between our shifts, my mom and I would walk down the hill past the church with the little steeple and into the heavily flooded tourist trap call Lourdes. I don’t mean any disrespect, but come on! The lines to see where Mary appeared were insane, like Disney World in July. To touch the holy water was the ultimate goal. In line to do so, my mom was by turns chatty and then arguing with people she thought were cutting the line or brushing up against her. The sights around me moved me, though. I saw everyone from terminal cancer patients to disabled children and adults in wheelchairs, similar to the patients at the hospital, and everyone in between. I had the thought that maybe the water could help me, too, but I quickly dispelled it. My aches and joint pains seemed small compared to the problems of the people in line with us. When I did, eventually, get my hands on the water, I prayed for my siblings, my family, and the people I’d seen in the hospital and in line. But I snuck a little prayer in there for myself at the end, just in case.
My mother scheduled a private hands-on healing in the holy water for the next day. That evening I got the flu with a high fever (how’s that for healing waters?) and was too sick to get out of the bed to witness my mother waiting in line again, putting on a swimsuit to get into water that millions of other people had been in, and then have some random person in a bathing suit touching her.
Instead I stayed in bed, sick, reading my racy book.
When Mom came back, though, she did look different: vulnerable and serene. She told me how the holy blessing in the water allowed one intention and all she prayed for was her children.
It was beautiful and sweet.
As with some of the other doctors I had seen, for example Shander and Phillips, Dr. Kenneth Liegner’s office was in his home (doctor No. 4). I remember his waiting room as being small, cold, and filled with environmental and political magazines. Though his waiting room was a bit nondescript, his personal office looked as if it belonged to a Lyme hoarder. Piles and piles of medical books and manila folders filled every available space. He knew so much about the disease, when he explained it to Dad and me it was like taking a crash college course. Every doctor explains Lyme disease in a different type of way, or maybe I just pay attention at different parts, but the way he explained things to me all made a lot of sense. He was not afraid to dive into scientific depth, in fear of patients not being able to comprehend, but my father and I understood a lot of it in ways that we never had before. On his walls hung the usual array of diplomas, but what caught my eye was the Hippocratic Oath in various languages, beautifully framed. When I asked him to explain to me what one meant, he did so with such passion it made me feel safe that I was in his care.
I liked Dr. Liegner a lot, though he didn’t have Horowitz’s bedside manner. In fact, he seemed a little preoccupied but in a good way, as if he was always thinking about me and my case. I’d tell him a joke and he’d chuckle a minute later because he was thinking about something like how thick the film was around the spirochetes hibernating in my cells’ mitochondria. He also always looked tired, as if he’d been up all night studying my file, and he seemed a bit nervous when he was explaining, as if he knew how fragile Lyme patients are.
One day, after I’d been seeing him awhile, he asked my dad and me if we would be willing to support the Time for Lyme charity gala, which was approaching. He was very nervous about asking us. He kept saying things like “The only reason I am asking you is because it will help a lot of people” and “The woman who founded this is a good woman who, along with her children, battle this horrible disease.” He was a very humble man.
“Of course,” my dad said before the doctor was halfway through his pitch. “We’ll do whatever we can to help.”
It’s funny how things work out. Time for Lyme turned into Lyme Research Alliance and became a part of Global Lyme Alliance. GLA is one of the most influential organizations in the world in the fight against Lyme and one I’m happy to be part of today.
Dr. Liegner believed in a very aggressive approach to fighting Lyme disease, including the long-term use of a peripherally inserted central catheter (PICC) line for IV antibiotics. For seven months I had a tube sticking out of my arm that was connected to my heart.
Let me say again: It was in my heart!
What perhaps frightened me the most, however, was the process of inserting the tube, which involves using a wire as a guideline that they would thread through my arm and into my heart. Again, that was into my heart!
At first, Dr. Liegner attempted to insert the PICC line himself, in his office with topical Novocain. The wails that flew out of me were heard in the waiting room. There, pacing back and forth in her ballerina flats with grosgrain bows, my mother became undone at a doctor’s thinking it would be relatively painless to insert a tube through an incision in her daughter’s arm and into her daughter’s heart without first putting her under. Mom demanded the attention of the doctor immediately. “Who would do such a thing?!” she exclaimed. “We are taking you to a hospital to do this procedure, Alexandria. I insist.”
I am not faulting Dr. Liegner. Undoubtedly he has successfully inserted countless PICC lines with little difficulty, but when it comes to people sticking sharp things into me and then threading a tube through the hole into my heart, I’m not your average patient.
I was relieved at the state of my mother’s parenting skills. I needed a mama bear. I think the doctor was happy to schedule the procedure at the local hospital in Westchester, and my mother drove me to the appointment three days later. When we got to the waiting area and filled out all the documents, I felt as if I had written a small book. Though the prospect of the PICC line was daunting, a Valium and some numbing cream had me singing to a Beatles’ song on my headphones. “Here comes the sun, little darling, here comes the sun, and I say…” And before you knew it, the tube was fed through a vein in my arm and was implanted into my heart. “It’s all right…”
We had a nurse come every morning and every afternoon to administer the IV antibiotics. I was living at my dad’s house. The nurses who came were very sweet. The morning nurse came at seven and when she started the drip, I would fall back asleep and wake up to a sudden wave of nausea. It was like my sleeping body knew that some strange foreign substance was running through my veins, and it wanted it to stop. I was prescribed a strong antinausea medication to help with this.
The first attempt with a certain antibiotic almost turned lethal. My whole body shook uncontrollably. A close friend, Dan, thought I was having a seizure (I wasn’t but I was close) and rushed me to the emergency room. I took a few days off before trying a new antibiotic.
Medication on medication on medication.
Before I went on the PICC line, I’d spent weeks planting and cultivating a garden in my father’s yard. It was filled with herbs, veggies, and flowers. I loved feeling the earth in my hands and the sun on my back. About three weeks into the IV treatment those moments in the garden seemed like they belonged to another person in another time. In bed I went into a deep depression. My father had met a lovely woman named Dee (they eventually married). One day Dee came up to my room. “Why don’t you just go outside and do something?” she said. If I’d had the strength I would have thrown something at her. All I wanted to do was to go outside, but it was difficult for me to make it to the bathroom. In thinking back about that moment, I realize now how representative it is of one of the main difficulty Lyme sufferers face: not being taken seriously, or being accused of exaggerating our suffering. Though the idea that someone would go to such lengths to garner sympathy or attention might seem far-fetched, this reaction people have to Lyme is pretty common—and understandable.
Dee’s remark hurt me, but I didn’t say anything to her.
Along with being extraordinarily beautiful, Dee is a smart, tough cookie. I was thrilled when she came into my dad’s life. She was just what he needed. Though I was upset at Dee’s remark, in looking back I can’t really blame her. Throughout my illness, and for months at a time, I lived and acted like a normal, healthy girl. Dee saw me travel often to Europe. She saw me being social and happy at weddings and family gatherings and working hard, so why wouldn’t she think I was exaggerating? How could I seem so healthy one day and so sick the next? What she didn’t see were the days in between, the Lyme flare-ups or the reaction to the meds. The symptoms under the surface, like joint pain, headaches, and confusion, are invisible to the world. Sometimes symptoms of Lyme don’t seem unbearable to many people as well. To some, the thought of a headache or a bit of joint pain is no big deal. What they don’t understand is that pain is stronger than normal, constant, and nearly every day, on top of a slew of other annoying strange and frustrating things. A little Motrin and fresh air just doesn’t do the trick at all.
Dee would come to understand, and sometime later, at a Lyme awareness fund-raising dinner, we would have a touching and bonding moment. “I had no idea how much you had to endure,” she would tell me that night as she hugged me tenderly. “You are so strong and I’m so incredibly proud of you and you have come so far.”
I saw doctor No. 4, Liegner, for three years and for much of the time he had me on oral antibiotics. When I went off the meds, I’d push myself through the winters, trying to prove to everyone around me as well as myself that I was on my way to beating Lyme disease.
I wasn’t beating it. Instead, I was losing a little bit more of myself to it every day.
twenty-three
SMELLING LIKE GARLIC AND LOVING THE HIGH
For stretches under Liegner’s care, again in the fall and winter, I’d feel healthy and eager to make up for lost time. I put together art shows, did styling for models in magazines and for a few musical bands, went out every night, and had a great time. I loved meeting new people; I loved working on new projects and pulling clothes for photo shoots. I loved waking up early to go on a set and dress models and come home and paint. I started a little freelance styling gig and my first major client was a Latina pop star who had some hit singles in the United States. This girl was a sweetheart. Her managers? Not so much. Still I worked my butt off for them for three months straight and loved every minute of it. I had my health back and I was ready for whatever life handed me. Finally, I was ready to be a fully healthy functioning adult.
Well, that’s not exactly true. I had formed a habit of denying my symptoms and pretending they weren’t creeping up on me. I thought I could believe my way out of my disease. I’m all for positive thinking, but there is a big difference between positive thinking and denial. I would lie to myself when I was exhausted and blame it on work. I couldn’t remember things? I was just tired. I would blame my joint pain on walking too much in high heels—I was only twenty-four, for goodness sakes! Still, you can keep the ruse up for only so long. There comes a point when you just have to stop lying to yourself and others.
There also comes a point when you can’t lie anymore.
In March 2007 I planned a surprise birthday party for a friend. By the time all the guests had arrived and yelled “Surprise!” I’d crashed on his bed, where I stayed for the entire party. Mind you, I had organized the whole thing, so I was basically the hostess who passed out in the back room while everyone enjoyed the party.
As spring came, I began experiencing severe brain fog, joint pain, and undeniable fatigue. My speech slowed and just about any movement in my joints became painful. I had to walk with a cane a couple of times. All I wanted to wear was loose sweats or men’s khakis (a great look for an aspiring stylist!) because the feeling of anything tight on my body was restricting and frankly, painful. I called my father nearly in tears.
“I think the Lyme is back, and I don’t know what to do.”
My father was adamant about one thing: No rock should ever go unturned. No treatment should be ignored or unexplored.
“We have to try something new.”
My parents were scared and maybe more so than ever before. Weren’t the treatments working? Hadn’t I stayed home three or four summers in a row getting well? What went wrong? Why didn’t the powerful army of antibiotics work?
Then one day, as if he were Sherlock Holmes uncovering a clue, my father announced, “Chinese medicine!”
He came home that day all excited, with a lot of information about how effective Chinese medicine and herbs were at helping patients with hepatitis, HIV, and cancer.
“They boost your immune system so much that the spirochetes can’t live in the body anymore!” he proclaimed. “This is the most ancient form of medicine in the world! It has to work! And Dr. Horowitz swears by this guy! We have to give him a try.”
And so I was off to see to see the extraordinary Dr. Qingcai Zhang. Doctor No. 5.
His office was in a charming house with trellises of wisteria and fountains all around it. It was magical, especially in the springtime.
My mother was impressed.
My dad was very excited.
I was annoyed.
Here I was going to yet another doctor and I knew he would load me up with yet another major treatment program that would require even more effort than the antibiotics.
I was fed up with having to fight this disease once again.
Every time I thought I’d found the right doctor or the right treatment, I’d discover it was just part of the answer or a temporary fix. It becomes even more frustrating as treatments underachieve or fail outright. It’s not that the doctors and medicine were bad, it was just that the disease was better, smarter. Sooner or later, every person reaches the same point in their recovery: They give up hope that life will ever be normal again.
I started feeling sorry for myself and thinking, What is the point of this, anyhow? I am probably going to have to live like this forever, be this fragile sick dumb girl who probably can never be a mother, or a good partner. Who the hell would want to put up with any of this? What man would be able to stand my constant bouts of dry heaving over a toilet, or night sweats, memory loss, and depression? I am destined to have a lonely, lousy life.
STRAIGHT TO THE HEART
“Approximately 10 percent to 15 percent of people who are treated for medically documented Lyme disease develop persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.”
—NEW YORK TIMES
For the most part, I didn’t involve my mother with my doctors’ visits and the Lyme carousel I was on. She was still raising children (my two younger sisters) and running a company. She was also then in a weird place because of her separation with my dad.
But I love my mother dearly. She is a truly amazing and insightful woman. Being around my mom is like being around a fairy child, a female Peter Pan, if you will.
Mom has a way about her. You cannot resist her or her charming demands.
I think I was about eleven years old when my mother strongly suggested that we take a trip to Lourdes, France. My mother is very spiritual, as I have explained, and her spirituality covers a large spectrum. When my mother told Sister Sheehan (the flying nun who raced me to the ER when I had the noodle stuck up my nose) that we were going to Lourdes, Sister Sheehan exclaimed, “No! You can’t do that! You must be a part of a pilgrimage!” My mother responded with a quiet, confident answer, “Well then, I suppose it is in God’s hands.” And it was. Apparently, Mother Mary had appeared in Lourdes about eighteen times. It is a healing place, and there is a hospital for the mentally and physically disabled there. Somehow, my clever mom managed to get us a volunteering gig at the hospital.
So, one very hot summer day, off we went on this pilgrimage to France.
Lourdes is in the foothills of the Pyrenees Mountains. We were driven up a set of windy roads that led to a small classic French town with a church in the center. We stayed in a hostel run by a plump, homely, older woman who showed us to our little room. The accommodation included two small, single beds clad in artichoke-colored blankets, a shower fit for Tinker Bell, and a tiny toilet. The sink stood like a birdbath in the middle of the room away from the toilet or shower. Very European. My mother wasn’t impressed. She took one look at the room and let out a little gasp, after which she held her breath with her cheeks as large as balloons.
“Well,” she said with an exhale, “at least the color story in here is mustard,” which, according to Mom, is “very chic, very Lanvin.”
I plopped on the little bed and opened a book I was reading. Although I can’t recall the title, I do remember is was a bit racy for my age. The heroine of the story had married a mean man who “wouldn’t stop bothering her on their honeymoon,” events that would leave her in pain afterward. I really didn’t understand it at first, but when I finally got what they were talking about I felt embarrassed and hid the book from my mom—but I kept reading when she wasn’t looking.
Anyhow, the next day, after a few bland meals in our room, we ventured into the hospital, where two small, thin older nuns in interesting blue habits met us. They showed us around the hospital and in broken English explained what our daily duties and hours would be. The head nun called me “Une Petite,” aka “Little One.” Our job was to change soiled and wet sheets on the patients’ beds. Distracted, I tried very hard to not to show the shock I was experiencing. I think I might have even begun to cry a little when I saw the all the people in wheelchairs, most of whom seemingly had little brain activity at all.
Still, my mom and I stayed chipper and chatty with everyone who worked there and especially with those poor residents of the hospital. Why not bring a little warmth and human interaction into their lives?
“Madam, Une Petite,” the old head nun began, “s’il vous plait, you may no speak wiz za patients.”
Mom and I started to giggle like Lucy and Ethel from I Love Lucy. Not a smart move.
“I am afraid I weel af to move you and Une Petite to za kitchen,” said the nun, “for za cooking of za lunch an dinner.”
Which sounded just fine to me. Cooking in a French kitchen or changing soiled sheets? Not really a toss-up, except that the nun didn’t mean that we would be cooking anything. What she meant to say was that we were going to clean off the tables and then wash the dirty dishes.
So off Lucy and Ethel went to zee kitchen.
In between our shifts, my mom and I would walk down the hill past the church with the little steeple and into the heavily flooded tourist trap call Lourdes. I don’t mean any disrespect, but come on! The lines to see where Mary appeared were insane, like Disney World in July. To touch the holy water was the ultimate goal. In line to do so, my mom was by turns chatty and then arguing with people she thought were cutting the line or brushing up against her. The sights around me moved me, though. I saw everyone from terminal cancer patients to disabled children and adults in wheelchairs, similar to the patients at the hospital, and everyone in between. I had the thought that maybe the water could help me, too, but I quickly dispelled it. My aches and joint pains seemed small compared to the problems of the people in line with us. When I did, eventually, get my hands on the water, I prayed for my siblings, my family, and the people I’d seen in the hospital and in line. But I snuck a little prayer in there for myself at the end, just in case.
My mother scheduled a private hands-on healing in the holy water for the next day. That evening I got the flu with a high fever (how’s that for healing waters?) and was too sick to get out of the bed to witness my mother waiting in line again, putting on a swimsuit to get into water that millions of other people had been in, and then have some random person in a bathing suit touching her.
Instead I stayed in bed, sick, reading my racy book.
When Mom came back, though, she did look different: vulnerable and serene. She told me how the holy blessing in the water allowed one intention and all she prayed for was her children.
It was beautiful and sweet.
As with some of the other doctors I had seen, for example Shander and Phillips, Dr. Kenneth Liegner’s office was in his home (doctor No. 4). I remember his waiting room as being small, cold, and filled with environmental and political magazines. Though his waiting room was a bit nondescript, his personal office looked as if it belonged to a Lyme hoarder. Piles and piles of medical books and manila folders filled every available space. He knew so much about the disease, when he explained it to Dad and me it was like taking a crash college course. Every doctor explains Lyme disease in a different type of way, or maybe I just pay attention at different parts, but the way he explained things to me all made a lot of sense. He was not afraid to dive into scientific depth, in fear of patients not being able to comprehend, but my father and I understood a lot of it in ways that we never had before. On his walls hung the usual array of diplomas, but what caught my eye was the Hippocratic Oath in various languages, beautifully framed. When I asked him to explain to me what one meant, he did so with such passion it made me feel safe that I was in his care.
I liked Dr. Liegner a lot, though he didn’t have Horowitz’s bedside manner. In fact, he seemed a little preoccupied but in a good way, as if he was always thinking about me and my case. I’d tell him a joke and he’d chuckle a minute later because he was thinking about something like how thick the film was around the spirochetes hibernating in my cells’ mitochondria. He also always looked tired, as if he’d been up all night studying my file, and he seemed a bit nervous when he was explaining, as if he knew how fragile Lyme patients are.
One day, after I’d been seeing him awhile, he asked my dad and me if we would be willing to support the Time for Lyme charity gala, which was approaching. He was very nervous about asking us. He kept saying things like “The only reason I am asking you is because it will help a lot of people” and “The woman who founded this is a good woman who, along with her children, battle this horrible disease.” He was a very humble man.
“Of course,” my dad said before the doctor was halfway through his pitch. “We’ll do whatever we can to help.”
It’s funny how things work out. Time for Lyme turned into Lyme Research Alliance and became a part of Global Lyme Alliance. GLA is one of the most influential organizations in the world in the fight against Lyme and one I’m happy to be part of today.
Dr. Liegner believed in a very aggressive approach to fighting Lyme disease, including the long-term use of a peripherally inserted central catheter (PICC) line for IV antibiotics. For seven months I had a tube sticking out of my arm that was connected to my heart.
Let me say again: It was in my heart!
What perhaps frightened me the most, however, was the process of inserting the tube, which involves using a wire as a guideline that they would thread through my arm and into my heart. Again, that was into my heart!
At first, Dr. Liegner attempted to insert the PICC line himself, in his office with topical Novocain. The wails that flew out of me were heard in the waiting room. There, pacing back and forth in her ballerina flats with grosgrain bows, my mother became undone at a doctor’s thinking it would be relatively painless to insert a tube through an incision in her daughter’s arm and into her daughter’s heart without first putting her under. Mom demanded the attention of the doctor immediately. “Who would do such a thing?!” she exclaimed. “We are taking you to a hospital to do this procedure, Alexandria. I insist.”
I am not faulting Dr. Liegner. Undoubtedly he has successfully inserted countless PICC lines with little difficulty, but when it comes to people sticking sharp things into me and then threading a tube through the hole into my heart, I’m not your average patient.
I was relieved at the state of my mother’s parenting skills. I needed a mama bear. I think the doctor was happy to schedule the procedure at the local hospital in Westchester, and my mother drove me to the appointment three days later. When we got to the waiting area and filled out all the documents, I felt as if I had written a small book. Though the prospect of the PICC line was daunting, a Valium and some numbing cream had me singing to a Beatles’ song on my headphones. “Here comes the sun, little darling, here comes the sun, and I say…” And before you knew it, the tube was fed through a vein in my arm and was implanted into my heart. “It’s all right…”
We had a nurse come every morning and every afternoon to administer the IV antibiotics. I was living at my dad’s house. The nurses who came were very sweet. The morning nurse came at seven and when she started the drip, I would fall back asleep and wake up to a sudden wave of nausea. It was like my sleeping body knew that some strange foreign substance was running through my veins, and it wanted it to stop. I was prescribed a strong antinausea medication to help with this.
The first attempt with a certain antibiotic almost turned lethal. My whole body shook uncontrollably. A close friend, Dan, thought I was having a seizure (I wasn’t but I was close) and rushed me to the emergency room. I took a few days off before trying a new antibiotic.
Medication on medication on medication.
Before I went on the PICC line, I’d spent weeks planting and cultivating a garden in my father’s yard. It was filled with herbs, veggies, and flowers. I loved feeling the earth in my hands and the sun on my back. About three weeks into the IV treatment those moments in the garden seemed like they belonged to another person in another time. In bed I went into a deep depression. My father had met a lovely woman named Dee (they eventually married). One day Dee came up to my room. “Why don’t you just go outside and do something?” she said. If I’d had the strength I would have thrown something at her. All I wanted to do was to go outside, but it was difficult for me to make it to the bathroom. In thinking back about that moment, I realize now how representative it is of one of the main difficulty Lyme sufferers face: not being taken seriously, or being accused of exaggerating our suffering. Though the idea that someone would go to such lengths to garner sympathy or attention might seem far-fetched, this reaction people have to Lyme is pretty common—and understandable.
Dee’s remark hurt me, but I didn’t say anything to her.
Along with being extraordinarily beautiful, Dee is a smart, tough cookie. I was thrilled when she came into my dad’s life. She was just what he needed. Though I was upset at Dee’s remark, in looking back I can’t really blame her. Throughout my illness, and for months at a time, I lived and acted like a normal, healthy girl. Dee saw me travel often to Europe. She saw me being social and happy at weddings and family gatherings and working hard, so why wouldn’t she think I was exaggerating? How could I seem so healthy one day and so sick the next? What she didn’t see were the days in between, the Lyme flare-ups or the reaction to the meds. The symptoms under the surface, like joint pain, headaches, and confusion, are invisible to the world. Sometimes symptoms of Lyme don’t seem unbearable to many people as well. To some, the thought of a headache or a bit of joint pain is no big deal. What they don’t understand is that pain is stronger than normal, constant, and nearly every day, on top of a slew of other annoying strange and frustrating things. A little Motrin and fresh air just doesn’t do the trick at all.
Dee would come to understand, and sometime later, at a Lyme awareness fund-raising dinner, we would have a touching and bonding moment. “I had no idea how much you had to endure,” she would tell me that night as she hugged me tenderly. “You are so strong and I’m so incredibly proud of you and you have come so far.”
I saw doctor No. 4, Liegner, for three years and for much of the time he had me on oral antibiotics. When I went off the meds, I’d push myself through the winters, trying to prove to everyone around me as well as myself that I was on my way to beating Lyme disease.
I wasn’t beating it. Instead, I was losing a little bit more of myself to it every day.
twenty-three
SMELLING LIKE GARLIC AND LOVING THE HIGH
For stretches under Liegner’s care, again in the fall and winter, I’d feel healthy and eager to make up for lost time. I put together art shows, did styling for models in magazines and for a few musical bands, went out every night, and had a great time. I loved meeting new people; I loved working on new projects and pulling clothes for photo shoots. I loved waking up early to go on a set and dress models and come home and paint. I started a little freelance styling gig and my first major client was a Latina pop star who had some hit singles in the United States. This girl was a sweetheart. Her managers? Not so much. Still I worked my butt off for them for three months straight and loved every minute of it. I had my health back and I was ready for whatever life handed me. Finally, I was ready to be a fully healthy functioning adult.
Well, that’s not exactly true. I had formed a habit of denying my symptoms and pretending they weren’t creeping up on me. I thought I could believe my way out of my disease. I’m all for positive thinking, but there is a big difference between positive thinking and denial. I would lie to myself when I was exhausted and blame it on work. I couldn’t remember things? I was just tired. I would blame my joint pain on walking too much in high heels—I was only twenty-four, for goodness sakes! Still, you can keep the ruse up for only so long. There comes a point when you just have to stop lying to yourself and others.
There also comes a point when you can’t lie anymore.
In March 2007 I planned a surprise birthday party for a friend. By the time all the guests had arrived and yelled “Surprise!” I’d crashed on his bed, where I stayed for the entire party. Mind you, I had organized the whole thing, so I was basically the hostess who passed out in the back room while everyone enjoyed the party.
As spring came, I began experiencing severe brain fog, joint pain, and undeniable fatigue. My speech slowed and just about any movement in my joints became painful. I had to walk with a cane a couple of times. All I wanted to wear was loose sweats or men’s khakis (a great look for an aspiring stylist!) because the feeling of anything tight on my body was restricting and frankly, painful. I called my father nearly in tears.
“I think the Lyme is back, and I don’t know what to do.”
My father was adamant about one thing: No rock should ever go unturned. No treatment should be ignored or unexplored.
“We have to try something new.”
My parents were scared and maybe more so than ever before. Weren’t the treatments working? Hadn’t I stayed home three or four summers in a row getting well? What went wrong? Why didn’t the powerful army of antibiotics work?
Then one day, as if he were Sherlock Holmes uncovering a clue, my father announced, “Chinese medicine!”
He came home that day all excited, with a lot of information about how effective Chinese medicine and herbs were at helping patients with hepatitis, HIV, and cancer.
“They boost your immune system so much that the spirochetes can’t live in the body anymore!” he proclaimed. “This is the most ancient form of medicine in the world! It has to work! And Dr. Horowitz swears by this guy! We have to give him a try.”
And so I was off to see to see the extraordinary Dr. Qingcai Zhang. Doctor No. 5.
His office was in a charming house with trellises of wisteria and fountains all around it. It was magical, especially in the springtime.
My mother was impressed.
My dad was very excited.
I was annoyed.
Here I was going to yet another doctor and I knew he would load me up with yet another major treatment program that would require even more effort than the antibiotics.
I was fed up with having to fight this disease once again.
Every time I thought I’d found the right doctor or the right treatment, I’d discover it was just part of the answer or a temporary fix. It becomes even more frustrating as treatments underachieve or fail outright. It’s not that the doctors and medicine were bad, it was just that the disease was better, smarter. Sooner or later, every person reaches the same point in their recovery: They give up hope that life will ever be normal again.
I started feeling sorry for myself and thinking, What is the point of this, anyhow? I am probably going to have to live like this forever, be this fragile sick dumb girl who probably can never be a mother, or a good partner. Who the hell would want to put up with any of this? What man would be able to stand my constant bouts of dry heaving over a toilet, or night sweats, memory loss, and depression? I am destined to have a lonely, lousy life.
