18

DEAR LYME DISEASE

I think it is time people finally know about our relationship and the real reason behind my seizure. You ruined my life for more than ten years and almost killed me. Thank fucking God you’re gone, because if you were still here, I probably wouldn’t be.

When I was diagnosed with you, I didn’t even really know what Lyme disease was. I thought I got it because there was too much limestone in our water in England. As soon as it was explained to me how people really do catch it, I instantly knew where I’d gotten it: from a tick in a fucking reindeer sanctuary, the kind that we just so happened to have in the back garden of our family house in England.

There were reindeer all around our house in England, and Mum has these photographs of us as little kids, running in a field surrounded by reindeer, and we looked like little angels, which we were because we still had not been exposed to the cruelties of the world. At one point, she even convinced the family that Dad would want a reindeer sanctuary on our property, so to “surprise” my dad for his birthday, we had this giant reindeer pen built. Mum kept saying, “Your father is going to love this!” On the big day, we were all excited. We blindfolded Dad and walked him out to what honestly turned out looking rather grim and foreboding—but he was going to love it!

As soon as we removed the blindfold, Dad took one look at this “gift” and said, “What the fuck is this? It looks like a concentration camp.”

It was at such a sanctuary that I was bitten by a tick. I saw this fat, gross bug buried halfway into my skin, screamed, and ran to Dad, who burned it off with a match. Everyone knows now not do that, but back then we didn’t. I forgot about the tick almost as soon as it was gone, but it left me with a painful reminder: Lyme disease.

Unfortunately, I wouldn’t know this for almost another decade, and during that time, my body and brain disintegrated. I knew that something was wrong with me, but I didn’t know what, and no one in my family believed me.

I had what my doctors called “traveling pain.” One day my throat would hurt, the next day my stomach, the day after that my joints. I was tired, and not the kind of tired that comes from staying out too late the night before—this was pure exhaustion. I’d wake up in the morning and feel as though I were encased in cement. The irony of this was that a lot of the time, I was in too much pain to even sleep. I felt as though I’d been hit by a bus and had whiplash: It hurt to walk, to turn my head, or to raise my arm to get something off a shelf.

I’d wake up some mornings and not understand what had happened in my sleep. My mouth would be all bloody, and the sides of my cheeks were lined with ulcers. What the fuck is wrong with me?

I’d have crazy mood swings, totally fine one minute and sobbing the next, but everyone kept writing them off: “Oh, Kelly’s having another wobbler, is she?” I went to doctor after doctor trying to figure it out, but they all kept insisting there was nothing wrong with me. I don’t blame them—I had been self-medicating for so many years that no one trusted me. Mum didn’t know what to believe: Was I really in pain, or was I just trying to get someone to write me another prescription?

Then came one of the scariest moments of my life. I had a three-and-a-half-minute grand mal seizure.

If anyone still thought I was fine, they didn’t after that.

I was on the set of Fashion Police, and the cameras were rolling. I started to sweat. In a matter of seconds, my clothes were soaked through and my makeup was dripping off my face. I looked at Joan and said, “Joan, something’s not right . . .”

Then all of a sudden, my arms shot up like a T. rex and my head twisted to the side. Melissa Rivers was there that day, and the last thing I remember is her saying, “Oh my God, she’s having a seizure!” She knew what to do and grabbed me and got me down on the ground in the fetal position.

One of the last things I remember was someone trying to shove a fat Louis Vuitton wallet in my mouth, and Melissa started yelling, “Don’t put anything in her mouth! Just keep her on her side and her chin up.” When someone is having a seizure and they’re on their side, if they start foaming at the mouth, it will keep them from choking. If they’re on their back, with something in their mouth, they can choke to death.

Thank God Missy was there that day, because she probably saved my life. I was foaming, and I’d bitten down so hard that I’d torn up the inside of my mouth, a flashback to those mornings of waking up and not knowing what had happened. When I finished seizing, I stood up and said, “Let’s finish the show, guys!”

It was like I was drunk—my vision swirly and my brain loopy—and I looked like a vampire with blood running down the sides of my mouth. Someone asked, “Do you know where you are?”

I was offended. “Of course I know where I am,” I said. “I’m in the country riding horses with my mum! Let’s get back to work!”

In the almost six years I’d worked with Joan, she had never missed a day, so even in my sickest state I didn’t want to let her down. But there was no finishing the show that day, and an ambulance rushed me to the hospital where I again became unconscious.

The seizure had scared Mum to death. I was unconscious and Mum had my power of attorney, so she signed papers allowing any kind of treatment the doctors thought necessary.

A brain scan showed scarring on my brain, which suggested I had been having seizures for an unknown amount of time. They diagnosed me with epilepsy and put me on a brain tranquilizer called Keppra to prevent any more seizures. You lose your driver’s license when you have a seizure, and you have to be seizure-free for a year before you get it back, but even if I’d had my license, I couldn’t have driven anywhere on Keppra.

The doctors kept changing my prescription, trying to get the dosage right, and it turned me into a zombie. You know in movies where a mental patient sits in a rocking chair in a cardigan and nightgown and stares at a wall all day? That was me. I lost me in every way you could imagine. I had about two hours a day where I was functioning, and that was it.

I couldn’t work out, couldn’t go out with friends, could barely even hold a conversation. The only work I could do was Fashion Police. I’d time my two hours of life to coincide with that, and for the rest of the day, I was pretty much a goner.

My prescriptions kept piling up. Every pill I took had some kind of a side effect, and then I was given another pill to take care of that side effect. I couldn’t sleep, so they gave me Ambien. When Ambien made me nauseated, they switched me to Trazodone, but that gave me acid reflux, so then I had to take an antacid every day. One of the medications made me break out in a rash, so then there was an ointment for that. I took cranberry extract and antibiotics because one medication made me prone to getting urinary tract infections. Painkillers—for an ex–painkiller addict—to help with the head- and body aches. I was having panic attacks because I was so scared of having another seizure. Not kidding—I had pills to deal with the anxiety that I was having from taking so many pills. I had so many pill bottles that I had to get a separate bag for them. It was even bigger than my makeup bag, and the bottles rattled so much when I walked that it sounded as though I had maracas in my purse.

At this time, I was engaged and living with my fiancé, and my disease wasn’t easy on either of us. I’d always been very independent in my relationships, and it was important to me to maintain my own life, but now that was impossible. He didn’t want to let me out of his sight for fear that I’d have another seizure when I was alone. He drove me to doctors’ appointments and helped me remember what pills to take. We were in our twenties but living the life of a couple in their eighties.

When I got yet another prescription that left me barely able to speak, I was reduced to a lump on the couch, and that was my breaking point. I took my bag of pills, and my fiancé drove me to my mum’s house. Since we didn’t live together, she hadn’t seen the full amount of everything that I’d been prescribed, and she didn’t realize that I was taking dozens of different pills every single day. I sat them all out in front of her, one by one, until they lined up the length of the counter. “I can’t live like this anymore,” I said. “When have you ever known me to not want to take a pill? I’m a vegetable. I have no life.”

“Oh my God, Kel,” she said. I started to cry, and she did, too. As a last resort, she called Philip Battiade at Infusio.

Philip is an alternative medicine practitioner, and I’d first met him when he treated my brother for MS. Later, Philip told me he’d been confused by my behavior at our first meeting and that he and his partner kept looking at each other like, “What’s wrong with this woman?” I’d been extremely chatty—which is pretty normal for me—but I’d repeated myself over and over again and kept asking questions that made it seem as though I hadn’t been following anything anyone else said.

My odd behavior had led my family to believe that I was using again, but when I met with Philip, I assured him that I hadn’t used unprescribed drugs in years and that I thought I had Lyme disease. I had started entering my symptoms into online quizzes, and the results kept coming back Lyme disease, Lyme disease, Lyme disease.

For the first time in all my conversations with doctors, someone listened to me, and I got tested. The results were positive: I had stage three neurological Lyme disease. I was relieved to finally know what was going on, but I was also scared shitless. The disease had progressed so far that I was about six months away from having a heart attack or ending up in a wheelchair. To get my disease into remission, I needed treatment immediately.

The rigorous shooting schedule of Fashion Police meant that it was almost impossible to get time off, but the producers agreed to give it to me under one condition: that I pull some strings and get the show an interview with Miley Cyrus. Fortunately, Miley agreed. We did the interview, and the next day I got on a plane and flew to Philip’s treatment center in Germany.

My fiancé went with me, and I remember writing in my journal and ordering drink after drink as he slept beside me on the plane. On one hand—maybe this was crazy. On the other—I was falling apart and had never felt so crazy. I didn’t have a choice.

My one alternative was intravenous antibiotics, which is the type of Lyme disease treatment that is approved in the United States. With this kind of treatment, you are basically embalmed for twelve months. Between the drugs I’d taken as an addict and the drugs I’d taken after my seizure, I already felt as though I’d lost years of my life. I wasn’t ready to give up another year to pills, needles, doctor’s offices, and hospitals.

Within twenty-four hours of arriving at the clinic in Frankfurt, I started stem cell therapy.

Rather than trying to kill off the disease with antibiotics, this treatment worked to strengthen my immune system so my body could fight off and get rid of the disease on its own, which is a much more complete and lasting cure.

I stayed for two weeks of treatment. When I left, I was already feeling better. Within a three months, I started to feel like myself again. The fog had lifted. After six months, I felt healthier than I could ever remember. I still wasn’t the fittest athletically, but the muscle aches, joint pain, headaches, nausea, and mood swings were all gone. I was experiencing emotions and feelings again. I’d been in a diseased and doctor-approved drug-induced haze for so long that I didn’t know what it was like to be happy or sad or in pain. I didn’t even think I had feelings; everything just kind of hummed along at the same level of daze.

I’ve kept quiet about my Lyme disease not only for fear of pharmaceutical companies coming after me because of the cure I found in Germany but also because it seems like the trendy disease to have right now, and I’m tired of seeing sad celebrities play the victim on the cover of weekly mags. Since I know firsthand how awfully debilitating it is, I know who really has it and who is just trying to prolong their fifteen minutes. I don’t understand how anyone could think that the life you have to live with Lyme disease is glamorous.

The harsh truth is that I was able to cure my disease because I had the money to do so. I had the resources to find the right doctors, fly to Germany, take time off work, and invest in alternative therapies. I had loving people in my life who supported me through all this, even when it was fucking miserable to be around me. Most people do not have this, and the way the health care system in the United States works now, they are going to suffer for it.

I strongly believe that the real reason so many alternative therapies that are available elsewhere in the world aren’t available in America isn’t that they’re not safe but that the pharmaceutical companies don’t want anything cutting into their profits.

The United States is a country dependent on drugs. Now we have an antidepressant that you take with an antidepressant to make your antidepressant stronger. We also have a new sleeping pill that you can take with your sleeping pills to make your sleeping pills stronger. There are fucking drug ads on TV that all end with the line “May cause death,” but doctors keep writing prescriptions and people just keep taking them, no questions asked.

Due to the things I have been through in my life, and certain conditions I struggle with—such as PTSD, ADHD, and anxiety—I will probably always be a person who is on medication. I don’t love this fact about myself, but as with many things in my life, it is what it is. I want to be a happy, healthy, functioning person, and for me, this is what it takes. I learned the hard way to do my own research about everything now, and it takes a lot to even get me to pop an ibuprofen.

I’ve learned to advocate for myself when it comes to my health, and I trust my intuition. If I think something is wrong, I refuse to let anyone dismiss it.

And sadly, I stay the fuck away from reindeer.

Love,

Kelly O