Samantha’s Nightmare

by Laura Zeller

For young Samantha Colter, the horrors of one dark Halloween night haunt her to this day. Wishing to remain anonymous, “Samantha Colter” sat down with me to give a first hand account of her life thus far. I feel very privileged to share her story with you.

When I first met her, I never could have guessed what she was about to reveal, and that our lives were so intertwined. After emailing me to express her gratitude for sharing my Lyme story, Samantha asked if I could meet with her at a local coffee shop to talk about Lyme disease. Sensing the urgent tone in her voice, I agreed to meet her in person, not quite sure what to expect.

At first glance, Samantha looked like a typical teenager, complete with baggy pants, multiple piercings, and bright pink streaks in her hair. As she plopped herself down on the couch across from me, I couldn’t help but think to myself “what am I doing here?” Peeking down from underneath her heavy sweatshirt, I saw a large tattoo of a cross, and what appeared to be the name Chris.

Before I could ask her how I could help, her blue eyes glassed over and she started to cry. She took a deep breath, and said, “I need you to listen, okay?” Sensing something deep was coming, I settled in to relax. I will try to quote what she said as best I can. I told her I was happy to listen to her story, and that I had a Lyme support group, and helped people every day. Samantha already knew my personal story, so she felt comfortable that I would understand her story.

After some small talk, Samantha began with “Well, I watched my mother suffer with Lyme disease as a kid. For as long as I can remember, she was super sick.” Samantha said. “She was in a wheelchair, and her legs wouldn’t work right. My mom had pain in all her joints, and her head always hurt. She always had the flu, and was always pulling off the ticks. We took her to the doctor and she had a dozen pills to take every day. I got the pills for her, and I took care of her. We used to take care of stray cats, feed them milk, even though we didn’t have much money. We got a check from the government and food stamps, but we were pretty poor.”

Samantha continued on to describe her tortured childhood. We spent 3 hours together talking, as I tried to relate to her story as best I could. In the end, Samantha told me more about her heartbreak than I could have imagined.

It turns out that Samantha was an only child who never knew her father. Instead of playing and laughing like a normal little girl, Samantha was too busy acting as a nurse to her mother. Samantha said her childhood was a blur of washing her mother’s hair, getting her pain pills, and cooking Ramen noodles for dinner. For 11 years, Samantha and her Mom shared the same one room apartment, and slept together in the only bed they had.

As she described her youth, it was clear to me that all these two souls had in the world was each other. Samantha remembers her mother “…got lots of tick bites from Ray, a beautiful black lab we had.” Her mother had about 10 cats and dogs living and sleeping with them. Samantha remembered ticks crawling all over their apartment, as she used to pull them off the animals and keep the big ones as pets in a jar with grass. Ticks as pets, yes, you heard me right.

Samantha remembered many trips to the doctor’s office. She described how they did not like to go because the doctors thought her Mom was a "crazy lunatic" even though she was in a wheelchair and so weak she couldn’t stand without assistance. Even at a young age, Samantha knew her mother was not crazy because she was so strong inside and had a high pain tolerance. Samantha went on to explain, “…my mom’s face sagged and people thought she had a stroke, but the ticks did it to her. The doctors gave her pills that helped her pain but made her super overweight. When she realized it was the pills, she asked to stop taking them, but the doctor gave her more fat pills and her pain came back. It was so heartbreaking seeing her go through this, and I couldn't do anything about it because I was just a little kid.”

Life was a constant struggle for Samantha and her mother, and it was about to get a whole lot worse. Samantha vividly remembers a cold, dark, Halloween night when she was 11 years old. “I remember all the other kids were out trick or treating.” Samantha paused to clear her throat, and then surveyed the room to make sure nobody could hear us. She continued, “I had been always sleeping in the room with my mom to keep her company. She hated being lonely, and in the extreme pain she was always in, she liked me to lie next to her. This night was very different. She told me to make a bed on the floor with covers and sleep on that instead. I agreed (even though it was unusual) I went to sleep having a mysterious dream of her death. Ticks were crawling out of her brain and she was dead. I woke up terrified and tried to get her up. She was very cold. I ran to the neighbors house and told them I can't wake my mommy up!” Samantha put her face in her hands.

The neighbor came over and found Samantha’s mother was gone. The neighbor called 911, and it took 2 hours for EMS to respond to the scene. Samantha remembers those hours as the worst in her life, and she is reliving the raw emotional shock as she tells me her story. When the paramedics arrived, they tried to resuscitate my mom, but she was already gone. “The ticks killed my mom.” Samantha remarked. “They crawled into our apartment and they killed her.” A brief silence followed, as I was speechless.

While I was trying to think of something supportive to say, Samantha wiped her tears away and remarked, “ Why can’t they cure Lyme disease? Tell me why? Why did she have to die? What is being done Laura?” My life is destroyed and nobody cares!” Samantha stood up and walked quickly out of the coffee shop. Shaken, I searched for tissues, and quickly walked outside after her. Samantha found a secluded bench to gather her thoughts. I waited a few minutes, until she waved me over to come to her. “Samantha” I said calmly. “This was not your fault, and I am so sorry you lost your mom.”

Samantha looked up at me, and we hugged each other for a long while. After a moment, I tried to help her as best I could. I gave her a counselor’s name, a support group phone number, and wrote down websites I thought might help her. Is there anything I can do to help you?” I asked her, while thinking to myself how much courage this young woman had to tell me all of this. “I want you to tell my story Laura,” she said. “ Tell the world, and leave nothing out! People need to know how serious Lyme is, and how it kills people. It will bring me closure to know my story is out there. I need to know my Mom died for a reason. I want her to be a hero, and proof of how bad Lyme disease is. She did not have to die.” Samantha pulled up her sleeve, revealing her colored tattoo. “This is a tribute to my mom, her name was Christine.” The tattoo was a beautiful cross bearing woman with angel’s wings.

I promised Samantha that I would share her story, and I hope I have done it justice. I hope by sharing her story with you that she can gain some closure and peace after such a young and difficult life thus far. Samantha is now 16 years old. After her mother’s death, she was put in foster care. She eventually found a loving home with one of the families who fostered her. Samantha hopes to graduate from high school and go to college for nursing. She is in counseling now, and is doing as well as can be expected. Amazingly, Samantha never got Lyme disease herself. She attributes that to her childhood habit of looking for ticks with flashlights, and then putting them in jars. Samantha avoids ticks now, and she also does not like to talk about Lyme disease.

She says she is trying to move on with her life, and is working to salvage a normal life with her new family. It is her dream to have her own daughter someday and share happy fun times. Samantha wishes that all Lyme disease can be cured, and that doctors would take responsibility for misdiagnosing and under treating so many thousands of people.

After my afternoon with Samantha, I was emotionally exhausted. Overwhelmed by the intensity of the day, I tried to reason with the purpose of what I had just shared. Honestly, I was so upset that I drove around in my car listening to Josh Groban’s song “To where you are” and crying my eyes out. I cried not only for Samantha, and her nightmare, but also for the Lyme disease patients around the world. Samantha hit the nail right on the head when she said “Why did this happen?” She went on to say that “It wouldn’t be like this if she had cancer. The doctors wouldn’t have told her she was a crazy person. Lyme gets no respect.”

Reflecting on Samantha’s story, I found myself angrier than I care to admit. It makes me livid that it is 2007 and Lyme disease is still being grossly misdiagnosed and under treated. I did not have the heart to tell Samantha about the recent Lyme disease protests and the current state of chaos involving tick borne political affairs.

Lyme disease is a nightmare of an illness, and has become a battleground for political war. The outrageous misinformation set forth by the Infectious Disease Society of America (IDSA), and directed towards Lyme Literate Medical Doctors is proof of how far we still have to go. How many more people have to die before chronic Lyme disease is properly acknowledged? Haven’t we lost our freedom as American citizens when we cannot get the health care we deserve? Instead we have a society of self-proclaimed “experts” (IDSA) dictating to the medical community what is right and wrong for us as individuals. I know in my heart that Samantha was right; it is different for cancer patients.

Lyme disease sufferers deserve and demand respect. Something has to change, and the time is now! The lime green ribbon is a symbol that represents the hope, courage, strength and bravery of all Lyme disease sufferers.