A lot of reporters say, “Oh, if you get bitten, you just get treated and it’s fine, right?” Nope. Not that simple.
Ally Hilfiger, daughter of fashion designer Tommy and former star of MTV’s reality show Rich Girls, has been everywhere lately. From Marie Claire and Harper’s Bazaar to NBC’s Today, the defiant title of Hilfiger’s book, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, has made her an international spokesperson for Lyme disease parity. It’s just what the doctor ordered.
I interviewed Hilfiger several weeks ago, as she was jetsetting on her whirlwind international book tour. Since my fellow HuffPost Lyme blogger Dana Parish had already published an excellent Q&A with Hilfiger about her book, I took the opportunity to color a bit outside of the lines–particularly as I discovered that Hilfiger, too, is an artist whose work may not be entirely coincidental to her health. We had a fascinating, long conversation about Lyme disease, writing, painting, drugs, mind, body, and spirit.
You’ve been everywhere lately, and I know you’re a new mom. I can’t even imagine how busy you are. Where do you get the energy?
Yeah, it’s a lot! But it’s cool, it’s fun. You learn how to balance…whatever that means. [Laughs.]
Do you still have any Lyme-related fatigue that interferes with your mommy energy?
Yeah [sighs]…it’s interesting. You know, mommy fatigue is different than Lyme fatigue, and I know the difference. It’s weird. It’s definitely a noticeable, different type of fatigue. The headaches, joint pain–you know, I have arthritis in my index finger–so it’s difficult changing a diaper. [Laughs.]
Dana Parish and I have spoken a bit, and we’ve both been told by a lot of people that we are “brave” for being so public about Lyme disease. You must hear that a lot.
I do. People have told me that and I don’t feel brave for doing it. I’m just being honest. It’s just my experience. I guess maybe because people get scrutinized for it–maybe that’s why people think we’re being brave. It is what it is.
It’s our life experience. Why hide it? So tell me about your experience with your book tour. It’s been huge. What have your interactions with other journalists been like?
It’s been amazing, actually. The people who know very little about it…it’s like, OK, maybe I’m going to actually help somebody understand this disease. Hopefully. It’s also encouraging at book signings, when I’m speaking about the book, seeing how many people are being helped is very encouraging. It propels me forward.
I’m sure that the responses I’ve seen are only a small sampling of what you’ve encountered–and even it is almost overwhelming. So many people are really desperate for support that they inexplicably can’t get from what you’d expect to be the best resources. There’s been a lot of misinformation–even forgetting the scientific debate, but just the pushback against actual patient experiences with symptoms, diagnosis and treatment–among news media. I’ve noticed that local news media in some areas do a good job, but national news media often only report in a way that I would consider respectful when interviewing celebrities or other high-profile people, but otherwise often will ignore patient experiences and instead defer to experts such as the CDC and only present their side as the authority.
A lot of reporters say, “Oh, if you get bitten, you just get treated and it’s fine, right?” Nope. Not that simple. If you’re lucky, that can be the case, but it’s just not that simple. So, you know, I just tell them there’s no cure–look, I did everything that I could, almost every treatment under the sun. I was misdiagnosed for 11 years, and then treated for another 11. I continue to do maintenance here and there. I wish I could give a one-sentence answer when I’m asked, “What do you do to get better?” A) There’s no cure. B) I did a million things, I tried them all.
What treatments have you tried?
When I was first diagnosed, I took a cocktail of antibiotics. I continued on different types, both orally and intravenously, for over seven years. I would be on them for six to nine months and then feel better and go work again. Working in New York City is brutal, and I’d get sick again. I would deny the symptoms creeping back up and pretend they weren’t there, and they would inevitably take me down really hard. The relapses were really bad every spring. I think it had to do with the allergens.
Really? You’re the first person I have ever heard who would say this. I am sorry to make this about me, but every April and May it’s devastating–I feel OK until spring, and then it hits hard.
It’s the allergens. That’s why I moved to L.A. After years of this, my dad said wee have to try something else. I said, “Yeah, let’s throw in the towel. I’m just going to live like this. What’s the point?” He said, “No, we have to keep trying.” So we turned to homeopathy. First we tried Chinese medicine, but you have to really connect with it and it wasn’t working for me. So then I turned to homeopathy. I found a doctor in New York City who basically detoxed me with all sorts of different treatments. I was, like, on my ass, exhausted for four months. Then they were able to boost my immune system with antimicrobial IVs, hydrogen peroxide, et cetera, and that super-boosted my immune system.
Some people take reishi mushrooms and others to support their immune systems. But a lot of people don’t have the resources to pay for conventional, much less alternative treatments.
I know. I tried ayurveda, a lot of different things, and it took years to figure out what it was. Luckily I have the resources. I don’t know what to tell people who don’t except to go on a really strict anti-inflammatory diet, take tons of vitamins C and D, sleep as much as you can and try to eat a lot of garlic. Simple stuff. Infrared saunas are great. I had so many fevers that I couldn’t stand the heat anymore.
Are you heat intolerant? I’ve developed a severe heat intolerance, whether it’s from weather, a hot bath or exercise.
I’ve developed a low blood pressure syndrome that’s caused by Lyme disease, and that’s been a huge problem. It’s hard. I used to get a lot of fevers from Babesia–I have Lyme and Babesia–and I get really shaky and feel like I’m going to pass out. I also have a great fear of being cold. I am afraid of the cold.
Everything you’re talking about has also been my experience. I get terrible tremors in the heat; people have asked me if I have Parkinson’s disease when they see my hands shake violently after getting overheated. Even moderate exercise nowadays causes a flare-up.
I cried in front of a personal trainer. He thought I was trying to get out of exercise, but I was shaking so much and I couldn’t handle it. I never went back to him again. [Laughs.]
Before I knew I had Lyme, I worked out a lot. And then gradually it became unbearable. When I heated up, I would get double vision, shake, feel like I was going to pass out. I figured that was just exertion. But then I wouldn’t be able to find my locker anymore, ever. It was really scary. I’d walk around the whole locker room inspecting every lock. Eventually I realized that if I sat down, after I cooled off a little, I could usually find the lock. Eventually I painted it green so that I could find it. I felt like I had dementia–which I basically do sometimes.
I totally relate to that. I do feel like I have dementia sometimes–it’s weird. Spotty patches of it.
Your mental health issues are a focus of the book. I’m curious about the neuropsychiatric symptoms overall–but also, how aware were you while it was going on? Did you feel like you were losing touch at the time?
Since I got out of the hospital, I’ve been emotionally and mentally stable. That was one weird episode, which is why it was so bizarre and scary.
It was one of those things where I was being broken open spiritually. It’s what they call a spiritual emergency. I understood that I was not well both physically and mentally, but I was also very in the moment with what I was going through. I couldn’t stop talking. It was like I was spinning out of control, saying all these things and not making sense. My mother said that I would blurt out a sentence that was profound–something that had truth and depth to it. It would fly out, and then I’d go and write something on the wall. My mom was scared because she knew that something bigger was going on. She thought it was interesting. She actually thought that a psychic might be the one to help me, which turned out to be interesting because the psychiatrist who ultimately helped me turned out to be very intuitive. So maybe she was right. [Laughs.]
I’m sorry to talk about myself again, but–
You’re a Lyme patient. We’re all in this together.
I studied creative writing and I also paint, and I got to a point at which I wouldn’t be able to think–I would write obsessively, sort of like you’re talking about, your speech patterns. I got to a point at which I started to wonder–I’m mentioning it because of what you said; I haven’t thought about it since it happened–but I used to wonder at the time whether I might actually have syphilis. I never considered Lyme at the time, and it wasn’t even because of the physical symptoms that I thought about it, but because I was having these inexplicable creative impulses and also inexplicable emotional imbalances–suddenly. I’ve always read rumors that van Gogh, for example, and Oscar Wilde, had syphilis, and always connected with their work. And of course aside from artists, there’s a long list of people whose neurosyphilis caused madness that manifested in various ways–both creative and destructive–all of it stemming from inflammation and damage to the brain. Of course, these paranoid ideas were racing through my mind at a time when I wasn’t entirely stable…
I’m a painter as well, actually. The only way that I was able to express myself, even when my body was sick but I didn’t know that I had this disease, was to paint obsessively and to write lyrics and poems. That’s so interesting–comparing syphilis to Lyme.
That’s why I brought it up. It’s so interesting to me, and I wonder how many people reading this will relate, how many resort to art to express themselves when they can’t concentrate. I used to write long fiction, and then gradually I couldn’t focus well enough to read, and then couldn’t organize my thoughts well enough to write any kind of narrative. Not even an outline. It got to a point at which I was desperate to express myself and couldn’t do so in the way that comes most naturally to me–through words–and so I began to paint obsessively. Visually, I could express myself. Now that I’ve been treated, I can organize my thoughts again and can both read and write, but really only nonfiction. I can reason and I can remember facts and information, but I can’t seem to retain narratives organized by time as well. How did you manage to write a book?
I was pregnant when I wrote the book. I got a lot better first. And I did sit down and write compulsively before I got pregnant. I said, this story has got to be told, goddamnit. Maybe this is the purpose of why I got this disease. Maybe this story has to be told. I moved to L.A. and got pregnant, and it was the perfect opportunity to sit down and write the book. I just did it. I had a friend who was an author, and she came over every Wednesday at 1:00 p.m. and I had to deliver. I had to read a chapter out loud to her. And, you know, I think it was this higher purpose of knowing that I might be able to make a small difference in the Lyme community and help people here and there with my message. I was just honest. I was not afraid to be honest and vulnerable. People have said, “you’re so great.” No, I’m just being honest.
I don’t think you can communicate the experience of this illness without being honest. Being able to organize anything of a book length with Lyme disease is a major accomplishment, so congratulations.
Thank you. I go through ups and downs like every other person. I’m very proud of myself for this accomplishment because I’m also a little bit of a workaholic. [Laughs.] The title of the book, Bite Me, was literally me telling the doctors and the disease to bite me, almost like this warrior came out. I asked for a lot of help. I didn’t have any memory. My memories of my childhood are swept away. I don’t have that. I had to ask my family about my childhood. That was emotional. I had to relive my parents’ divorce and separation–difficult. And then having to close my clothing company. I got better after a German treatment protocol, and then I got really sick again because I didn’t stick to the diet. I need to take my own advice. But once I opened the company, I felt great and then I got so sick. They found an aneurysm in my brain, which I don’t think is related to [Lyme] disease, but I was having constant headaches and, anyway, I had to close the company. That was the part of the book through which I cried the most. We were a season from the tipping point of the company blowing up and we had to close it. It was the most devastating thing in the world.
We give up a lot when we have Lyme disease. I gave up my social life. Relationships were difficult to sustain because I was too tired and fatigued and too busy with my treatment protocol, too sick to maintain relationships. And a lot of my memory was wiped out. The transformative aspect of this disease was fascinating to me because I transformed from victim to warrior to survivor to transformed self-healer, to maybe a healer in some sense for others. The things that I’ve learned along the way are invaluable: self-love, self-care, forgiveness to yourself and to others, vulnerability and honesty to yourself and others. I was able to learn these lessons at a young age because of this disease, and for that I’m very grateful. Maybe it’s saving me from getting in trouble with something else.
I feel exactly the same way, almost like I’ve gotten a lot of life lessons packed in that maybe I wouldn’t have had until my 80s. Hypothetically, how do you think your life would have been different right now if you had been diagnosed and effectively treated early?
I’d probably be a multimillionaire living in some castle and…no, I’m kidding. [Laughs.] That’s a great question. I don’t know. I would…probably be more self-destructive and have a lack of direction. And be a complete workaholic. I’d be a self-destructive workaholic. That’s probably what I’d be. It’s saved my life in some ways. Now I get to be–I have no choice but to live in some sort of balance in my life. My body will not allow me to do X, Y and Z. I have to take naps, I have to sleep, I have to eat a healthy diet. It’s…in a way, it helps me live a balanced life that is maybe in a way more difficult for other people.
You know what’s so funny. I was thinking about this today. I was thinking that other people are so lucky because if they really wanted to have pasta, they could, blah blah blah. And then I thought, wait a minute, what about other women who want to be on a healthy diet to lose weight–wait a minute! I have to eat well and because of it probably won’t gain that much weight. [Laughs.] Because I have no choice! So I thought, oh, maybe it is easier for me in some ways because I have no option.
You’re saying things I’ve only ever heard in my own mind. It does sort of feel like there’s some sort of…spiritual aspect. Maybe it’s just a consequence, but it really does force you to try to keep life in balance and to think about what this life is and what’s going on and what your limitations are. When you slow down, you do appreciate things better and you are less self-destructive. My lifestyle is a lot more under control as a result of this. I wouldn’t call it a perk. But it is interesting. You’re touching on spiritual side-effects that can be seen as positive.
Well, you know, the addiction, eating disorders, other things that people go through, it’s not only a physical healing. It’s physical, spiritual, psychological. And I think that if the Lyme community and doctors really understood that–maybe there needs to be a 12-step program for Lyme disease. It is about healing on a psychological, spiritual, emotional and obviously a physical level. I needed to use spritual tools to heal myself from the depths and the dungeons of this disease.
I was never any version of a spiritual person before this and, bluntly, I became desperate. Utterly desperate and didn’t feel that I had any way out and so I tried ayahuasca…
Oh, cool! I’ve been talking to Yolanda about trying that! [Laughs.] How was it?
What I’ll say about that is that I had never in my life taken any sort of drug other than alcohol–and all the psych meds I had been put on by that time–and I was drinking too much. I realize now that I was self-medicating. I was in so much physical pain, from constant electrical shocks in my feet and legs to cluster headaches, all with no explanation. So anyway, the first experience was absolutely terrifying. It really was. But–
I want to hear more. Tell me more. This is so interesting to me.
Well, so basically my first experience was just a pure panic attack. Absolute terror. But there were no visions, no hallucinations, whatever.
Did the shaman–
There was no shaman…
What?! You’re crazy!
I kind of was at the time, to be honest. But listen, I’m a researcher. I spent a year and a half researching this. I didn’t do it on a whim; my pattern is that I usually will measure the pool, calculate its volume, take the temperature of the water several times, do a chemical analysis, watch it change over seasons–and then dive in feet first.
I read scientific journal abstracts assessing how ayahuasca may benefit depression and anxiety, studies that have been conducted by U.S. researchers onsite in Brazil where ayahuasca is used as both a spiritual sacrament and as a medicine. Before I did this, I had become desperate. I had begun to have recurring mental visions of myself going over the edge of my apartment building. It was terrifying. It’s what drove me to see a psychiatrist. The medications I was put on were not helping. This was literally my rock bottom and my last chance as far as I was concerned. And at the time I wasn’t entirely in my right mind, which I now feel certain were neuropsychiatric effects of Lyme disease. Because all of these problems, even my social anxiety, have resolved since I began treatment for Lyme. But back to ayahuasca: The second time I took it, it changed the entire trajecory of my life in the most real way I have ever experienced. I lost all interest in drinking alcohol, which was something I was hoping to do but I didn’t expect that outcome. It’s because…it’s indescribable, the dialogue that happened during the experience. But it also converted me into a more spiritually minded person, and I’ve come out of it recognizing that plants are intelligent, sentient beings.
They are. Have you read the articles and watched documentaries about how intelligent they are?
Yeah, and fungi as well. The experience was–feel free to judge!–having a conversation with a plant. But there were a few things. First of all, watching Yolanda on the Real Housewives of Beverly Hills was what brought Lyme to my attention. And then a friend of mine from grad school who went on to become a nurse saw all my complaints about my health problems on Facebook and she told me I had to get tested for Lyme. So after my ayahuasca experience, I read about herbal protocols for treating Lyme disease, and about the Jarisch-Herxheimer reaction. I ordered one of the herbal protocols as a sort of experiment to find out if I might have a reaction. I had been to so many specialists that I honestly felt like seeing another one, a Lyme specialist, would inevitably have the same outcome: there’s nothing wrong with you but anxiety, take Zoloft and move on with your life. So I took the herbs as a total cynic except that because of my ayahuasca experiences, I couldn’t deny that plant medicine is real medicine. That is not something that I believed before ayahuasca. Now it’s a no-brainer. So I took the Lyme protocol and within a couple of weeks, my symptoms had become exponentially worse. So I went straight to a Lyme specialist. So what this all comes down to is that I’m so interested in what you’re saying because it seems that we’ve both experienced a lot of serendipity–one thing leading to another in such unorthodox ways.
You’re gonna freak out when you read the book. I love having conversations like this with people. It’s so fascinating. It’s so interesting.
I’d love to see your paintings.
I have a book on blurb.com. It’s just a simple black and white ink on paper series that I did on processing Lyme disease. Very abstract. I get very funny about…I’ve had art shows and everything, but I haven’t sent many people my work. As an artist, I think that the art that I’ve done is not what I’d be working on now. It’s the one thing I get nervous about judgment.
So these paintings are part of your Lyme experience?
Yeah, I paint really large canvases. I actually talk about myself as an artist in the book–a lot of rituals and things like that. But when I moved to L.A. and I closed the company, I just painted and cooked. These specific works, I think I was pregnant and had no idea I was pregnant. It was bringing closure to the disease in my mind, I think. I was thinking, “I’m past this,” even though I know it’s a chronic illness. And so I think that this work was easy to sit down at the table and make with India ink.
The paintings look almost cellular, like bacteria.
I know, I know. What’s funny is that I paint from a very deep subconscious meditative state. I don’t tap into my consciousness…I have no idea what I’m painting half the time. [Laughs.] And they just came out of me and I couldn’t stop doing them. Everyone who saw them said, “these are like cells.” I did know that I was pregnant subconsciously. All through meditation I kept visualizing myself as pregnant. And then I found out I was pregnant. It’s crazy.
It’s not creepy to me. This experience has transformed a lot of my perceptions. You know, if you’re thinking about ayahuasca, though, do it with someone and realize it’s…not fun.
I would do it with a shaman. I’m convinced that I died of an acid overdose in a past life. I’m not kidding. I’ve never touched the stuff. I’ve smoked a shitload of pot. I was using it to medicate the symptoms, as well. But I’ve never gone anywhere near acid because I was deathly afraid of any sort of hallucinogen. And it’s so interesting because I have this fear of losing myself and panicking that I might die. I had panic attacks in my teen years and would end up in emergency rooms. That’s what’s holding me back.
I don’t know if you’ve read anything about this, but…
No, I can’t read. I can’t–
You’re so knowledgeable though.
I listen a lot. I’m good at listening.
I grew up in the Just Say No era and I have always been scared to death of drugs. Scared, scared, scared. I never tried anything, even when I was sort of a clubkid in my youth. At this point, the medical community has finally been allowed again to research medical benefits of psychedelic drugs–or medications, as many are turning out to be–including psilocybin, which is so-called magic mushrooms, and ayahuasca which contains DMT, and an even more potent, terrifying-sounding plant medicine called iboga, may be able to physically rewire the neurons in the brain. Sometimes after a single experience, patients’ neurons seem to have been “reset” so that they don’t experience panic and anxiety anymore, or not as acutely. And some of these have been proven very effective at also cutting off addictive compulsions. Iboga or ibogaine are used commonly for this, and psilocybin has proven to be among the most effective proven means by which to end nicotine addiction.
In my experience, all of this is absolutely true. After ayahuasca, many things don’t make sense at all. It’s disorienting and sometimes terrifying. But after a period of what’s called integrating the experience, which feels more real than day-to-day life, then you come to this place of absolute peace. Peace. And you lose a lot of fear. I used to have paralyzing social anxiety. For a time, I wouldn’t have been able to talk to you. But if you’re thinking about doing this, consider it a kind of medicine–but a spiritual medicine as well as a physical purgative.
That’s really hopeful. Are you going to write about it?
I haven’t written about it yet. I have a bit of a concern because there’s so much out there trying to undermine a lot of the things I’ve taken on with my writing. But reality is reality, whether or not people accept it.
Well thank you for telling me about it. I hope you’ll share it. It’s so interesting. I’m really glad it helped you.
Thank you…and thank you for the time and for being so candid and honest. Whether you feel it’s brave or not, what you’re doing is so incredibly important. For the most part, high-profile people are the only ones whose stories get out in the national media, and you’re particularly good at explaining how devastating and complex Lyme disease can be.
Ally Hilfiger’s book, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, is available now at all major bookstores. Her Lyme disease-inspired artwork can be found at Blurb.com.