Updated: Dec 11, 2019
When it comes to my Lyme Disease, I have always felt ashamed towards that part of myself. I have patched it over with denial, self-deprecating jokes, and white lies to avoid explanation or vulnerability. Now, at 27 years old, I find myself beginning to talk openly about my Lyme Disease and I am discovering that not only has my Lyme provided me with extraordinarily rare experiences, but it has challenged me to become an individual, confident in my nuances, and able to help others.
Growing up, my childhood felt fairly normal. Our family was lucky enough to grow up steps away from the beach and my Dad owned a business building docks and piers in the harbor, so my life mostly revolved around the ocean. Most of my memories involve making up games to play in the waves, riding bikes up and down the boardwalk, surfing in the early mornings, and binge eating tacos.
When we first moved to Newport Beach, the peninsula was all one story homes and the majority of the people who lived there were over 80 years old. Us kids would play Truth or Dare on the beach, pranking as many innocent bystanders as we could.
My brother would consistently get yelled at for skateboarding past five o’clock at night and the two of us would play Four Corners in the intersection until one of us cried from losing (most of the time it was him since he was younger, and he would inevitably take the ball and tattle to my mom that I was cheating).
As we got older, houses began growing taller, younger professionals moved in, and the wealth around us grew tremendously. Even at a young age I felt the financial pressures to ‘Keep up with the Joneses’. With financial stress came the incessant fighting between
my parents. And amongst it all - I was a strong-willed child able to convince my brother to rally against my parents, a ferocious reader always wanting to outsmart my Mom, and a creative spirit. But again, to me this all seems fairly normal. With all families there is good and bad, ups and downs, and warm, playful memories to lean on.
I distinctly remember being in the fourth grade when I knew that my life, my body, my brain- everything, was not normal at all. My problems grew past trouble-making or rebellion. I would go through ‘spells’ of puzzling problems. For a few months, I just kept vomiting anywhere and everywhere (sorry- gross- I know). I was admitted to CHOC (Children’s Hospital of Orange County) where they did multiple procedures with no diagnosis, so they chalked it up to desperation for attention. I realize now that this is where a long history of doctors blaming me for my chronic illness began.
That time period came and passed, and a new few months began of insane phobias. I became afraid of the rain and damaged my ear drums attempting to drown out the sound with my head phones. I became afraid of socks and cut them all up into little pieces. Again, this was concluded to be an act of rebellion or a need for attention. The waves of turbulence would come and go and our family would cling to the times of ‘normality’. My Mom would try to dig deeper. She put me in therapy, which ultimately backfired. She took me to natural healers, which I criticized endlessly. And when she took me to Western Medicine doctors, we were both dismissed. Me, deemed a spoiled brat and my mom, accused of being a bored house wife who possibly has Munchausen’s by Proxy (this is super offensive by the way and is a common accusation for parents with children of Lyme).
As I got older and began Middle School, my need to feel normal was out of this world unhealthy. I wanted to wear the same jeans as my friends, be invited to the parties, and I absolutely needed a flip phone. I was desperate to feel accepted. In retrospect, my friends could feel my desperation and I was undoubtedly awkward. These two years of my life sucked and luckily I don’t remember much of them. At 13 I was a zombie. My anxiety sky-rocketed, but my chronic fatigue and brain fog was so intense that I could barely think, let alone see. I remember asking my mom if I was dead because the way I walked through life was almost dream-like. A lot of my peripheral vision had blurred out and my cognitive function moved in slow-motion, so in a way it really was a dream. I had trouble keeping up in conversations and because of that, an already awkward age became uncomfortable and distressing.
I was diagnosed with Mononucleosis, which was typical of teenagers. Yet for some reason mine was a two year diagnosis with numerous ER trips. From there, the diagnoses just started rolling in - Obsessive Compulsive Disorder, Ring of Fire ADD, Multiple Sclerosis, Gout, Parkinson’s, or my personal favorite - Narcolepsy (those drugs were a traumatizing experience). And speaking of drugs, wow, the drugs. The most impactful of them all being Trileptal, because you know I could be bipolar or having seizures.. so let's just try it! Trileptal made me fearless, and I mean fearless. I was actually running into traffic and even got into trouble with theft. Because of these insanely negative side effects, my parents and my doctor began weaning me off of Trileptal, which was horrible. The chronic fatigue set back in and all I know is that I slept for days on end. I couldn’t open my eyes. My mind was awake at times, but the strength to open my eye lids just wasn’t there. My parents carried me to doctor appointments and amazingly enough, I had enough strength to open my mouth to mutter snarky comments to the doctors about their inadequacy.
From then on I was either dropped as a patient (the doctor at my ER even started refusing to speak to me when I was admitted) or a super fun medical experiment. The Amen Clinic had a field day on my brain! All the while, I was enjoying the wonders of High School.
I ditched school a lot to sleep or I went to school and slept through my classes. My Spanish class nicknamed me ‘Sueño’ and my napping became a running joke in my Math class of who could wake me up first. Of course there were kids who were mean and threw stuff at me, but there were also kids who met me with a lot of kindness and others who just thought I was ‘being funny’. I learned that one of the only ways to balance my social life with my medical perplexity was self-deprecating jokes or pretending my actions were on purpose. Still to this day, I find this habit a hard one to shake.
I hid a lot of my symptoms from everyone around me. I stopped sharing with doctors because I was tired of being quashed; I stopped sharing with my parents because they couldn’t understand what my body was going through and I was worn out from arguing; and I definitely never shared with my friends because I just wanted to be like everybody else.
During this time, my parents had saved enough money to remodel our home. It was my moms dream home - a beach cottage filled with refurbished light fixtures, antique furniture, and wood burning fireplaces. We conveniently rented a home down the block to better survey the construction process and stay within our community during the building period. In the rental home, my parents and my brother had bedrooms upstairs and I had the only bedroom downstairs. My room had a door to an outdoor patio and I had my own bathroom. As a teenager, you would think this is completely ideal. And it was! I had a blast sneaking out with friends, blaring music, and spending hours working on my Myspace (my most embarrassing internet content known to date) . Meanwhile, I was becoming extremely irritable, anxious, and depressed. I also started exhibiting bouts of anger, but I was blacking out in the midst of it. I was blacking out a lot and it became difficult to distinguish between what was real and what was not. I was fluctuating between insomnia and hypersomnia, and things were just becoming… hazy. Needless to say, my parents were freaking out. I was seeing a neurologist, doing brain scans, and blood tests but all to no avail. Finally, one blood test showed something. I was low in my B12 levels. With no other leads, my parents and my neurologist began treating me for B12 deficiency. The doctor told my mom to give it 4 weeks.
Meanwhile, my brain was doing a complete somersault. Those 4 weeks were complete and utter psychosis. I would lay awake in bed watching people crawling over the wall, into our patio, and pacing past my door for hours. I would watch them peer into the windows of my door emotionlessly. In the patio, there was a spiral staircase that went up to the second floor. I would see them mindlessly wander up the spiral stairs and I would hope they hadn’t found a way into the house. It was like a scene from The Walking Dead.
One day after getting out of the shower, I was standing in my towel in my bedroom when I heard screaming and shouting and glass breaking everywhere. I was home alone. The glass was so loud and continued for what seemed like minutes, I thought someone must be breaking in! I crawled under my bed still in my towel, wet hair and all, just hoping whoever it was wouldn’t find me. I laid there for an hour while I heard them running through the house. When I heard my parents come home through the front door, I crawled out from under the bed and ran out to them. Nothing was broken. No one had broken in. No one had been in the house. I thought I was crazy.
On the exact day of the 4-week mark, my mom describes me as a wilted flower that came to life. I crawled out of the hole of the deep depression I was living in, my unpredictable bouts of anger came to a halt, and most importantly - the hallucinations stopped. All because of B12. Induced psychosis from B12 deficiency is rare, but so continues my life’s journey of rare symptoms and experiences!
It wasn’t until later in High School that I received an explanation as to why I became so deficient of B12 to begin with. I was seventeen when I received a diagnosis of Lyme Disease with other co-infections. I was never bit by a tick (and let me just state that this is only one of many ways you can get Lyme Disease). My Mom passed Lyme Disease to me through childbirth, which also explains my revolving door of weird behavior starting at a young age. Receiving a diagnosis should have been a joyous occasion to get answers, but we have learned that Lyme Disease is not only controversial in the medical industry, but is also extremely difficult to treat or manage. Not to mention, immensely expensive.
My experience with a B12 deficiency is one of many crazy situations I have come across in my life. Beyond weird symptoms are the bizarre instances I have had with physicians, from some of the top Lyme Specialists in the world, to legendary Homeopathic Healers working out of their home. I continue to manage my fears and anxiety that couple with such an unpredictable disease, while still maintaining humor regarding some of my funnier symptoms (like “the claws” - a term myself and a friend came up with when my hand muscles seize up with muscle spasms and neuropathy pain). My health has since improved and although there is not a cure for Lyme Disease, I find that I manage my symptoms quite well with homeopathic remedies! Some days I am overwhelmed with joint pain and other days I am volunteering to go on a hike. I have learned to laugh at myself when I am over zealous with physical activity and end up flaring some sort of symptom. I know that life is like this for everyone, Lyme Disease or not, it ebbs and flows. I have been able to get rid of my most serious symptoms and I now mostly manage lingering symptoms with natural supplements, lots of detox remedies, special diets and just listening to my body. I have grown to love my body and appreciate all that it does to keep me alive. And I have worked especially hard to remove myself from a sick identity. I still struggle with insecurities and anxiety, but I am grateful to have moved into what I call remission. Still - I’m always looking to try the next new thing to nurture my body and health!
Going to college, working internships and jobs, friendships, love and relationships, family dynamics - it all has been a wild ride, especially through the lens of my Lyme. I feel an immense responsibility to raise awareness, find answers and validate others like me - whether that be with Lyme Disease, other chronic illnesses or simply those that feel awkward or misunderstood. I, myself, have felt validated through finding my current Lyme doctor (whom I speak to about my questions, random afflictions and irrational anxieties regularly for the past 8 years), through finding quality friends (whom I feel safe, accepted, and loved by), by leaning on the support and unconditional love of family members, and by working hard in shaping self-identity within and outside of my Lyme Disease. I thrive on educating myself on health and wellness and I am excited to share all of the tid-bits of information I have gained over the years to help you feel happier and healthier! And while sharing my more embarrassing and vulnerable stories surrounding chronic illness can honestly sometimes be difficult for me, I simply hope it provides someone solace that truly - you are not alone and none of us are normal.