I feel as though I didn’t sleep last night, but I know for a fact that I did. I woke up to the horrific sound of my own scream, terrified and scared heart rate erratic. How is this possible, I think to myself, my life is already a living nightmare? Apparently what I go through isn’t enough, because I see it in my vivid dreams. But from a different point of view, where there is nothing I can say or do to stop the dream from happening. Instead of watching my life nightmares from the first person, I get to see them in my dreams from the second person. I watch everything that goes down and I beg myself to fight, but it’s a dream and no one can hear me; not even myself.
Before I continue, let me take you back to winter 2012. The IV treatments had begun, a 'new beginning' I remember calling it. I was ecstatic. After fighting with the insurance, waiting for the PICC line procedure, and finding an at-home nurse, the time had come for new treatment and it would be much stronger and more potent than ever before. Finally, I thought, maybe I would get better.
Day one of infusion went well, day two I trembled because I was so cold. I can remember my Dad putting blanket after blanket on me, but nothing was stopping me from shivering. That’s when we realized I had a raging fever. Taking some Tylenol and fighting off my aching legs and throbbing head, I managed to fight through the night.
Day three hit me hard. The temperature would not go down, I couldn’t walk--I couldn’t even think. I don’t even know if Tori was in that body because she just couldn’t fight anymore. The pain was unbearable. I couldn’t eat. We didn’t know what to do or who to call. There was a breaking point; when I tried to stand to get upstairs to bed, even with assistance I collapsed onto the floor. I tried to stand up, but my knees trembled underneath me and I could only take two assisted steps before I went down again.
Carrying me down to the car, my dad gave me a kiss on the forehead and my sister just stood there and cried. She had school the next day, she couldn’t come with us. Her tears broke my heart as we left them standing in the driveway. My Mom and I picked up my Nana along the way; my Mom didn’t want to be alone. I was a rag doll. I couldn’t speak. I just sat there; limp, freezing and terrified. We arrived at one of Boston’s world-renowned hospitals around 10p.m.
This is where the nightmare excelled. This is one of the horrific nights I relive in my sleep. They saw me as soon as I walked through the doors of the ER and for once I was given medical attention with no question, right away. Maybe they weren’t busy, I was in luck. I thought wrong. They took my vitals and sent out a page, it must have been a code because I had no idea what it meant nor did I think anything of it. Probably just another sick patient in need of medical assistance, I thought. It was then I saw them coming. Doctors, nurses, running for me, taking me away from my Mother and Nana. I tried to tell my mom I would be okay but before I could say anything I saw staff holding her back, and all I could let out was a half-cry-half-scream, “Mom!!!!!!!!”
As a write, tears stream down my face. The night only got worse but I see it ALL the time. I beg to not have the nightmares but they happen anyway. I see the doctors rushing towards me, I see my Mom in complete panic being held back, and my Nana standing there in complete shock. I see the clothes being stripped from my body, the needles and IV’s being poked into my body, and worst of all I see the wires. The wires to stabilize me, the wires to keep me alive, and then I see myself asleep laying there fighting to survive. I try to tell myself to wake up, to pull through but they are just horrors disturbing what could be a peaceful night's sleep. No one can actually hear my voice, not even myself. A dream can feel so real.
I was so naive as to what was actually happening. They took me into a busy Emergency Room, alarms going off everywhere. Chaotic, I thought, and scary. Within moments I realized the alarms weren’t going off for another patient. They were going off for me. Within moments doctors were swarmed around my hospital bed, I was stripped of my clothing and felt such a loss of dignity. But at that point, I didn’t even care. I felt the needles and the wires, I heard what the doctors were saying and I tried to block them out. There was one nurse whose job was to simply keep me calm. She held my hand, played with my hair, and tried to talk to me but I couldn’t speak. When I finally managed to speak the words “Will I be okay?” she gave me a sympathetic smile, and with a squeeze of the hand she did not answer my question. That is when everything went black.
When I woke up, I cried for my Mom. I was so vulnerable, so scared. Finally, they got her and she embraced me, giving me the strength to get through anything else I may have to persevere. My Nana seemed surprisingly calm, but I see through those things. Who wouldn’t be scared?
Finally, I was getting the care I needed. A doctor even came in and said that I had just experienced a full fledge “Herxheimer” reaction. Wow, I thought. This doctor actually knows about Lyme disease. Even better, she had a plan. They would keep me overnight for observation, and the next day they would admit me and give me my next few days of treatment in the hospital, monitored and safe. YES. This was exactly what I need to hear, and for the first time since I could remember, I felt safe.
I knew it was too good to be true. The next morning, they explained to us that they could not admit me because I was not 18 yet and this hospital was not for children. I am not sure how they didn’t realize that sooner, but they hadn’t and instead they decided to transfer me to another Boston hospital. Still unstable, I arrived at the next hospital by ambulance with my elevated heart rate, low blood pressure, and high fever. There I waited. I was offered no pain medicine, no food, nothing. My Dad arrived and we still had not been seen. We waited all day to be seen by infectious disease, and the more I waited the more I knew what was to come.
He walked into the room like dark storm clouds on a gloomy day. He looked angry and didn’t ask many questions. He checked my vitals, which were still unstable. He took a few steps back and just stared at me. Finally, he spoke and his voice could have made my ears bleed. “Young lady, this is not how Lyme disease patients act. You should be ashamed you are behaving this way, you should be in school not lying ‘sick’ in a hospital bed”. I couldn’t speak, so I began to weep. I could feel my heart yet again breaking. He looked at my parents and Nana and began to speak to them words that could only come from a cold heart. “You should be ashamed for putting a PICC line in her arm, it is unconventional. Chronic Lyme disease doesn’t exist, nor does this insane treatment you are trying to give her”. My Mom attempted to speak, her voice cracked. “If it’s not Lyme disease, then why is she unstable and having a reaction in response to her treatments like most Lyme patients do when they are sick?” He replied with “Herxheimer reaction isn’t even in the dictionary." My Dad, trying to stay calm asked him a question. “Okay, then how come she has positive Lyme Disease and Bartonella blood tests?” The so-called doctor responded. “Bartonella doesn’t even come from a tick. It comes from a cat scratch." The doctor turned to face me and continued to yell at me, with his cruel words and heartless soul.
This conversation was going nowhere. My Dad asked the doctor to stop speaking to me with such disrespect and to leave the room. The infectious disease doctor continued to yell at me, while I lay weak sobbing in the hospital bed. My Dad asked one more time. When the doctor still didn’t leave my father got out of his seat so fast, and out the Doctor went.
The nurses came in and said it was time for me to go. They didn’t know what else to do. They handed us the discharge papers and I left Boston’s world-renowned hospital unstable, neglected and disrespected. The four of us left, my Mom and Dad on each side of me--assisting me to walk. My Nana was speechless. We all were. When we stepped out onto the dark snowy sidewalk of Boston, Massachusetts it was then that I had never felt so helpless, terrified, and alone in my entire life. I looked up at the sky and watched the snowfall and thought about that horrid mean doctor. I laughed to myself; this would not be the end.
With that, we went home. Years may have gone by and the days may have faded but the memories have not. I remember his face, his cold heart, and words, I remember the neglect, being scared for my life. I remember all of it and it haunts me, awake and in sleep. This is one horror story out of thousands. Lyme patients experience this kind of neglect and treatment from doctors all the time, but do we let them win? No. We fight on. We are Lyme warriors and we do not let the medical field break us.
Tori Ashdown xoxo