Believe Me

by Yolanda Hadid

  Before Anwar arrives, I discuss his health challenges with Dr. Sponaugle. I have this strange feeling that there might be more to his story. Maybe Anwar’s joint pain isn’t growing pains, maybe the extreme exhaustion isn’t teenage fatigue, and maybe his sinus problems aren’t allergy related. My intuition led both my best friend and sister-in-law to their diagnoses, but I never thought about Anwar having Lyme. I guess because he’s a young, growing child. Yet the more I think about it, the more sense it makes. Especially since 25 percent of Lyme cases are children. Anwar is in the clinic with me every day keeping me company, so I ask Dr. Sponaugle to examine him and draw his blood to have it sent to labs all over the country for extensive testing. I am determined to get to the bottom of his health issues and find the real cause of his symptoms.

  At the end of the week, I sadly have to drop him off at the airport for his flight back to Los Angeles. I’m grateful for our time together, and his spirit motivates me to get through the remaining weeks of treatment before I meet his sisters in New York. There, I’m to receive the Starlight Award, for bringing awareness to Lyme disease, at the Lyme Research Alliance gala. This event is quickly approaching, and I need to write an acceptance speech. The old me could do this in thirty minutes. But it takes the new brain-fogged Yolanda at least a whole week to write something substantial. Typing a line or two on Instagram is the most writing I can do—and even that can take me hours. But I’m honored to be given this award and so I am determined to put my story on paper, no matter how long it takes.

  At the end of my six-week stay, they retest me for Lyme using the ELISA, the Western blot, and the Fry, which isn’t commonly used in the United States. After all the treatments I have done, the Lyme spirochetes have come out of hiding and back into my bloodstream—because all my lab results are now positive for Lyme. This may sound obvious since I know that I have Lyme, but I share this with you because five months earlier, when I was hospitalized at Cedars-Sinai, two of these same tests came back negative. This is common if you haven’t had the infection long enough for your body to develop antibodies that will appear on the test or you’ve had the infection too long, as I had, so it’s traveled from your bloodstream to an organ. The ELISA test detects only 50 to 65 percent of Lyme cases! You can also get a negative result if you were infected with a strain of Lyme or co-infections that the CDC-approved Lyme tests can’t detect. This can easily happen, since there are more than one hundred strains of the Lyme spirochetes in the United States and over three hundred strains worldwide.

  When I leave Sponaugle, I feel better. I am walking every night and a lot of my symptoms are less severe. I definitely have a lot more energy and am not in bed all day, every day. This small improvement feels like an enormous victory. Dr. Sponaugle opened my eyes to many different things. His seminars were helpful and educated me on the complexities of this multifaceted disease. It’s more clear now that I am not only fighting Lyme but also the co-infections—parasites, viral and bacterial infections, mold exposure, and heavy metals—and most likely a long road of healing in front of me.

  The Lyme Research Alliance gala is in Greenwich, Connecticut, and I fly from Florida to New York City. I meet Gigi and Bella at the hotel, and it is wonderful to catch up with my girls. David isn’t able to attend this important event, but I’m super grateful to have my angels by my side as well as Tom and Marc. As an honoree, I’m invited to sit in on the Lyme conference that is held earlier in the day of the gala. I am very excited to hear a group of leading scientists discuss their latest discoveries about Lyme, and it’s one of the most fascinating afternoons of my life. One top expert from Germany shares her research on neurological Lyme and its similarities to neurosyphilis, an infection of the brain or spinal cord. She shows images of her discovery on a big screen. One is the skull of a person who died from Lyme. During his autopsy, they found that spirochetes literally bored through the bone. This proves my point! This is exactly what I’ve been saying for two years, and nobody believed me! I must have said the following a hundred times: “I have an infection in my brain,” “Something is growing in my brain,” and “I feel like something is eating my brain.” How else could I have said this? How? And still no one understood me. The images on the doctor’s screen are clear evidence. The minute that the presentation is over, I run outside to call David.

  “I just saw scientific proof of what I’ve been trying to say for years, about my brain,” I tell him. “It validates that I was one hundred percent right.” He’s happy for me, but I don’t think he really understands how powerful this moment is for me. I rush back to the hotel room to tell my girls. They think it’s very interesting, but they can’t truly comprehend its significance either. I can’t blame them. It’s all part of “You don’t get it until you get it.”

  Despite my excitement about this discovery, it’s time to get ready for the gala and focus on my acceptance speech. It will be on the teleprompter, yet I’m very nervous because my world has become so small and I haven’t interacted with many people in a long time. When I step up to the podium, I feel shaky in my high heels and uncomfortable in my somewhat tight dress. I try to pull myself together and my speech goes well, but I realize that my emotions are raw from living this journey and I choke up a bit from sharing something so personal with a roomful of mostly strangers. I am happy to have my girls there to see me back on my feet as we are learning to make sense of the uncertainty we have faced as a family. At the end of this informative and heartfelt night, a teenage girl and her mother walk up to me. The girl has tears in her eyes and hugs me like she’s never going to let go.

  “My name is Lauren,” she says. I keep my arm around her.

  “The only reason that my daughter was finally diagnosed with Lyme is because you shared your story on the show,” her mother says. “We flew our whole family in from Canada to hear you speak and learn more about the Lyme research.”

  “For years, my dad told me that my symptoms were all in my head, and so did my doctors,” Lauren says. “Actually, it wasn’t until my dad heard you speak that he believed me.” Perhaps having a stranger describe the same exact symptoms and invisible disabilities his daughter complained about made him finally realize how wrong he had been.

  “He was so emotional after your speech tonight that he went outside for a breath of fresh air,” her mother says. “Thank you.” By now, I’ve heard stories like this a hundred times and met so many children who say that the worst part of their Lyme battle is being doubted by their parents. This is really sad to me because what child wants to be sick? No child chooses to stay home for long periods of time and miss out on being with friends. Yes, once in a while a child might need a day to stay in bed and watch mindless TV, but the symptoms of Lyme are real and unfakeable, and I’m not sure if that’s even a word!

  Meetings of this kind are very meaningful as they remind me why I put myself out there to be judged and ridiculed by those who are uneducated. The next day, the girls and I fly back to L.A. I stare out the window at the beautiful clouds with a great sense of completion. I shared my story with the world in a way that was open and honest. I pray that it brought awareness to this disease and inspired others to take the baton to share their journeys so that the story stays alive until a cure is found. Lyme deserves and needs awareness, but I did my part and now I need to get on with my life.

  Chapter Five

  YOU MAY SEE ME STRUGGLE, BUT YOU WILL NEVER SEE ME QUIT.

  Coming home after so many weeks away, I have a totally new appreciation for my life. The beauty of our Malibu home is breathtaking, and seeing David, Anwar, and my puppy, Lucky, warms my heart. My attitude is positive, and I’m excited to get back to all the things I love doing. I have a life to live. I am planning on going to Bella’s and Gigi’s horse shows and Anwar’s football game this week. Right away, I get into a walking routine and stick to the protocol I was sent home with. I am okay for a couple of weeks but as soon as I start getting back into the swing of my old life, my symptoms s
lowly kick back in. After spending the day at the girls’ horse show one Saturday, I get home feeling achy and fatigued, and my chronic cough comes back. The next morning, I wake up with rings under my eyes again, which I have learned is a measure of inflammation in my brain. I’m so exhausted that even after nine hours of sleep, it still feels as if the earth is pulling me down by my feet. I don’t really know how to describe this severe exhaustion in any other way.

  Still, I try to go through the motions of a “normal” life. One night David tells me that we have dinner plans with some important businesspeople. Although it takes all I have to get dressed, I force myself to pull it together and look presentable. Within ten minutes of arriving at the restaurant, the sound of people talking, silverware clinking against plates, and background music immediately shuts down my brain. I can’t focus. David and the other couples make small talk, but I can’t follow the conversation or speak. David is confused and gives me a look that says, “What’s wrong with you?” I don’t know! But there is nothing I can do about it. The only thing I’m craving is complete silence. I’ve gone from being a social butterfly to being trapped in a mentally paralyzing cocoon. This is a totally devastating moment because I realize that the life I thought I gained back is still unattainable. I felt much better in Florida because I was in treatment six days a week with no TV, no music, no stress, no social calendar, no wife duties, and no mommy duties. I want nothing more than to get back into my life, but I just don’t have the fuel to do so.

  I also feel the yin and yang of my marriage starting to shift; the balance is off. I don’t like it, but I can’t change it. We used to love listening to music in our house and in the car, but now it’s just irritating noise to me. Obviously, this is very difficult since David’s job is all about music. I used to enjoy the flow of artists, musicians, and managers coming in and out of David’s downstairs studio all day. I actually designed and built that studio myself. But now all this action is just chaos and noise that my brain can’t handle. At night, I just want to snuggle up with David and talk to connect. But he likes to unwind from a long day of work by watching TV before he goes to sleep. That all used to work, but now the lights and sounds overstimulate me and make me anxious, sending my nervous system into overdrive. Still, I want to be a good wife and don’t really believe in sleeping apart, so I cover my eyes with a sleep mask and use earplugs and David uses the wireless headphones that I got him. Some nights David doesn’t come to bed until one or two because he’s busy working in the studio. Yet my mom always told me that the sleep you get before midnight is the most important, especially when healing. It’s hard to find balance right now.

  At the end of March, the final episode of my first season on the Housewives airs. The last episode has a little write-up about each of the women. It explains where her life is or what has happened to her in the months since filming wrapped. My write-up says, “Yolanda is receiving treatment and getting stronger after being diagnosed with Lyme disease.” I really wish the “getting stronger” part was true because I am not feeling it right now. Even after months of treatment, I’m definitely not cured. Instead, I’m just trying desperately to hang on. I lost my life. This reminds me of a day back in 2010 when David wasn’t feeling well and I took him to see Dr. Harris. As we walked into the office, we bumped into a famous actor. I don’t remember his name, but David knew him.

  “Hi. How are you?” David asked.

  “Miserable. Absolutely miserable,” the actor said. “I have Lyme disease and lost my life.” At that time, I did not understand the meaning of his words. Unfortunately, I do today.

  Even more upsetting is this: I find out that Anwar tested positive for Lyme. When I see the pictures of the spirochetes on his Fry Labs results, my anxiety goes from one to a hundred in mere seconds. My baby! How could this be possible? A wave of helplessness washes over me. I am totally panic-stricken. How can I cure Anwar if I can’t cure myself? Once I get over the initial shock, I settle my thoughts and take control of the situation in good Capricorn fashion.

  “We finally found the reason for your symptoms,” I tell Anwar. He doesn’t seem to be shocked but is interested in how we’re going to treat it. “I don’t want to do antibiotics,” he says. “Let’s go the holistic route.” I go from feeling scared to being enraged by the fact that there is no cure. Yet I feel strangely empowered not only for my son but also for the countless children and teenagers I’ve met on my journey. The fire roars inside me, and my momma-bear powers ignite. There have been times when I thought I couldn’t handle another day of being sick, but this puts everything in a whole new perspective. Shame on me for ever thinking that way! I need to keep blazing this trail until a cure is found, an affordable cure for ALL!

  In late April, I decide to get my port removed after having it for five months. Many people have ports for years, but it feels really unnatural to have this foreign object hanging out of my chest, and it feels like the site is a bit infected, as it has been red and itchy lately. Intuitively, I have to get it out. Maybe it will make me feel like I have accomplished something. I view it as the start of a new chapter. I’ve missed taking bubbly baths, which have always been a ritual for me, a way to relax and get centered after a long day, so I’m dying to have a long bubbly bath and soak until my fingers are wrinkled like prunes.

  The morning of the procedure, Gigi is in the kitchen and I’m getting ready to leave for the hospital.

  “You must be nervous, Mommy,” she says.

  “Why do you say that?” I ask.

  “Because you always wear your clogs when you’re nervous,” she replies. I guess no matter how much you try to put on a brave face for your children, they know you inside and out. And she is right. I’ve had the same little Dutch clogs for twenty-five years and rarely wear them for fear of running into the fashion police, who seem to be everywhere in L.A. Somehow they give me a safe feeling and a sense of grounding, and to be honest they’re comfortable like no other pair of shoes I own.

  “Don’t forget we’re starting the master cleanse, okay?” Gigi says. “I’ll squeeze the lemons.” I can’t really think about a cleanse at this moment, but I smile at her.

  “Of course, my love,” I respond, not so sure. Gigi has seen me do this cleanse many times in her life, and recently it started to spark her interest. The master cleanse entails eating no solid food and drinking a tonic made of lemon juice, cayenne pepper, maple syrup, and spring water in order to cleanse. It reboots your metabolism and energizes your body, mind, and spirit. For me, it’s like practicing discipline. It’s not intended for losing weight, but you do shed a few pounds, which I believe is mainly inflammation. The first time I did it, in my early twenties, I was so inspired by how healthy and renewed I felt that I continued to do it religiously every year. My enthusiasm for the master cleanse has been so contagious and at one point our entire household was on it, including Alberto and Blanca. I promised Gigi I’d do it with her before she shoots her upcoming Guess campaign. The interesting thing about being a chronically ill mother is that no matter what your struggles are, your mommy duties never stop. So even though I’m having surgery, I will keep my promise to Gigi and start the cleanse today.

  My next season of the Housewives is filming, and the producers are following me to the hospital. I’m so nervous that I barely notice the film crew. David and I arrive and meet Dr. Piro in the pre-op room.

  “It’s graduation day! We’re taking the port out,” he says. “The disease is under control, but it’s gonna take a long time to recover from the psychological damage that this did because it takes a piece of you.” How is he making those assumptions?

  “I feel like I’m getting into better times,” I say.

  “Think of this like the beginning of the next phase to help recover from all that,” Dr. Piro says. I turn my focus inward. Is this the end of my journey? Is he right? Instantly, I start to cry.

  “I feel like I’ve lost my balls, you know?” I tell David. I feel scared and somewhat
defeated. Even though I always keep up a good front, if I’m really honest with myself, I know that my body is giving me very different signals from what my mind is trying and wants to believe. Deep inside, I can feel that this isn’t an ending at all. More than anyone in the world, I’m desperate for my health journey to wrap up right here, right now, but my body feels like a toxic waste dump. Other Lyme patients have told me that their doctors made similar comments; even the most brilliant doctors are not educated on this disease. This is exactly why I feel compelled to write this book.

  May 16, 2013

  Difficult does not mean impossible,

  it just means you have to work harder!

  #determinedtokicklymesass

  The last season of the Housewives ended with my realizing there was something wrong with my brain function after a dramatic fight. So I can’t say that I’m excited to start filming again. It’s overwhelming to think about working on the show while my recovery is still my full-time job. However, quitting isn’t an option because I am under contract, I need to honor my commitment and this job is my financial independence. These things, along with adrenaline, help me force myself to go to work and get me through the two-, three-, or four-hour shoots. I am also grateful for all the amazing things in my life. And by now my illness has been going on for so long that the ending must be right around the corner. I mean, who in the world gets sick for years? I’ve never heard anything so crazy.

  I recently learned about the spoon theory, a metaphor to help those who are chronically ill conserve their energy and use it wisely. You have a certain number of spoons each day, and when you use them up, you’re done. You can’t add more. The metaphor offers a way to accept, understand, and avoid feeling inadequate about your limitations while you fight to recover. So I use this metaphor to navigate filming, very consciously and carefully managing my spoons and don’t do anything else but film the show during this time. If I film in the afternoon or the evening, I stay in bed all morning. If I film in the morning, I stay in bed all afternoon and night. God, I am so glad someone thought of this spoon thing. It’s so simple but so helpful.