Some people with Lyme disease develop a host of related problems, like extreme sensitivity to light, sound, and various chemicals in the environment. (This last condition is called multiple chemical sensitivity, or MCS. For people who have it, being around gasoline fumes, cologne, and even clothes washed in certain detergents, can literally be life-threatening.) A California teenager with Lyme and the above-mentioned conditions recently found herself in a harrowing encounter with the law.

Some people with Lyme disease develop a host of related problems, like extreme sensitivity to light, sound, and various chemicals in the environment. (This last condition is called multiple chemical sensitivity, or MCS. For people who have it, being around gasoline fumes, cologne, and even clothes washed in certain detergents, can literally be life-threatening.)

Eighteen-year-old Makayla Berndt has all of the above-mentioned health issues and more. She’s also the founder of a Yahoo group for teens and young adults with Lyme disease, a published writer, and a frequent contributor to many Lyme-related internet discussion groups.

Her health problems recently led to a harrowing encounter with the police in Williams, a small town near Interstate 5 in northern California. 

She gave me permission to excerpt one of her recent yahoo postings:

So last night around 9:15 p.m. my mom and I were coming back from a doctor’s appointment trip, and the car needed gas. With my MCS, I can’t be in the car when my mom is fueling up without getting a huge reaction which affects my airways. So my mom dropped me off at a park, which was down the street from the gas station….you can see the gas station and park from each other. She wanted me to take our pepper spray with me, for protection. I had my sunglasses, earplugs and mask on.

So I am waiting for my mom, and a police car drives up. Two policemen come out of the car, and ask me what I am doing. I told them that my mom was down the street getting gas and that I have MCS… I can’t handle the fumes from the gas. One of the policemen says “Right” with the tone of “Yeah, Right”—didn’t believe me. Then they pointed their flashlight at me and I flinched…light sensitivity. And then of course they have fragrance on them, so I was reacting and my lungs were burning and I was having a hard time breathing.

So I told them that I was about to step back, because I was reacting to their laundry soap. And the police man says again “Right” in the same tone as before…so I stepped back, and they stepped forward. Then I showed them the pepper spray that I had in my hand, like you can see it if you want. And he asked why I had it, I told him 1) that my over-protective mom told me to carry it and 2) because I am sick, I have Lyme and I needed to protect myself if something happened. He then says “Right” again. Then he asked if I was from around the area, and I said, “No, I am traveling home from a doctor’s appointment, and my mom and I are on our way home.” So then one of the men asked if I had ID, and I don’t drive so I don’t have one. So he asked me for all my information, and I gave it to him.

At this point, Makayla’s mom returned, saw her daughter being questioned by the police, and came barreling out of the car yelling, “If you have cologne on, you are causing her damage!” After she verified what Makayla had already told the police, they finally let them go. Legs still trembling from her scary encounter, Makayla turned on her oxygen to help her breathe better, and “took all the detox agents that I had.”

In our phone conversation, Makayla said she doesn’t necessarily blame the police for stopping to talk to her. (Yes, she must have looked a bit odd with her sunglasses, carbon filter face mask, and earplugs, standing at the edge of the park at nine o’clock at night.)

But, she says, the cops obviously didn’t believe what she was saying, and when she tried to step back to protect herself from their harmful fragrance, they kept coming closer. She said her body was already reacting to just being around them in the open air. If they had put her in the enclosed environment of the police car, she fears she might have passed out or stopped breathing.

At this point, Makayla recommends that people in her situation carry a note from their doctor in their wallet or purse, explaining why they need to wear protective gear. Or perhaps a Medic-Alert bracelet.

Here’s my two cents worth: This is one more example of why we need increased public awareness of Lyme disease and related ills. Police officers are trained to respond to any number of unusual circumstances. The idea of encountering someone with MCS shouldn’t be a foreign concept to them. MCS is, after all, a protected condition under the Americans with Disabilities Act. This protection should include not having your life unwittingly imperiled by policemen who happen along while your mom is filling up the gas tank.

Contact this blogger at dleland@lymedisease.org.

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