Camerone Parker delivers this message with grace and gusto. Having lived a relatively normal life, she was ‘discovered’ at age 21 and has become a top Supermodel proudly represented by the famed FORD Modeling Agency. Since then her life has been anything but normal, jet-setting all over the world, walking the runway, and appearing in over 300 magazines. Camerone Parker has worked with top named designers like Bagley Mischka, Vera Wang, and Giorgio Armani, was seen nationwide on Billboards for Ralph Lauren POLO, and has been the face of Olay.
In this world of high fashion, Camerone was keeping a high stakes secret, in January of 1998 she was diagnosed with relapse-remitting Multiple Sclerosis (RRMS). Without health insurance to help with medical costs (one medication alone cost $65,000 a year) and knowing that her career was on the line, Camerone made the decision to keep her diagnosis quiet. She eventually got health insurance and in 2009 told the world about the secret she had been guarding.
Today this Supermodel turned Superhero has a mission- find a cure for MS. Camerone will tell you that even though she has a ‘common’ type of MS, no two people are alike. So, flanked by her team of medical professionals, husband, family, friends, and coach, Camerone works tirelessly to raise awareness and advocate for treatment of this disease. She is in high demand as a public speaker and is looking forward to walking the runway for New York Fashion Week this year. Through it all, Camerone Parker has never faltered—but if she did, we’d blame it on the shoes.
Shelly Rohe: Let’s start at the beginning. What it was like growing up for you?
Camerone Parker: My parents are Bill and Elise Chambers. They are amazing in the way they raised two children. I have one brother. We are a year and two days apart, and we are completely different from each other. And to have parents recognize the talents in both of their children I think was a unique blessing. I was a normal, happy, healthy, child. I went on to college, and everything in my life was kind of textbook, nothing out of the ordinary.
I was discovered as a model; and after having a discussion with my parents about that, I was off and running. I’m so blessed that I never did anything—and I still don’t do anything of ill repute, so my parents have never had to go running from embarrassment, at least so far! (laughs)
Rohe: How old were you when you first started professional modeling?
Parker: I was 23, the ripe old age of 23. (laughs)
Rohe: How were you discovered? How did that happen?
Parker: I happened to be shopping with my mother, and this gentleman kept walking around and I thought, “This is kind of creepy.” He wasn’t kind of creepy at all. He gave me his business card and he said, “Have you ever thought about modeling?” This is so embarrassing. I had just taken a swig of Diet Coke, and I sprayed it all over him when he said that! So, my Southern manners went out the door!
Rohe: (laughs) I do detect a bit of an accent. Where did you grow up?
Parker: I have Alabama roots. My dad’s part of the family is all from Alabama and my mother’s side is divided between Texas and the North Shore of Chicago. But I was raised in a real Southern family: “Yes, Ma’am.” “No, Ma’am.” “Yes, sir.” “No, sir.” All of that. I will tell you that that really sealed the deal. He realized I could be a model and talented at the same time. When I was discovered, I never really thought I was beautiful or pretty, I just knew that I was different. I truly to this day still believe I’m very unique and very different. I’m not everybody’s cup of tea, nor do I want to be everybody’s cup of tea. (laughs) I have a very edgy, avant-garde look that has gained steam as I’ve gotten older.
So, I decided to try this world out and never once looked back because the fashion world embraced me and it was because of this world that I can honestly say that I am alive today. Even though I had to keep my MS diagnosis a secret, I was able to generate the income needed to keep myself alive, and that is so important. I didn’t ask for favors or special treatment. I paid every cent of my medical treatment up until the time that I got medical insurance.
Rohe: When you were modeling and exhibiting symptoms, did you ever think anything significant was happening to you?
Parker: You know, I really didn’t give it any cause. I had some symptoms, but I didn’t think that they were symptoms. I thought it was just, “I’m tired.” “I’m on an airplane.” “Have you seen the shoes I’ve had to wear on the runway?” I had what I thought were very logical excuses, explanations of a few precursors before my diagnosis. As they would somewhat come on, they would hang on for a little while and then kind of go away. When I say that, it fits the mold of relapsing-remitting multiple sclerosis, which is what I was diagnosed with. It kind of waxes and wanes. The fighting, the numbness, the tingling, the MS hug that I would get in my chest, my horrendous vision loss, all of this was kind of adding up. But I was working so much, I didn’t give it a breath because I thought it was because I was tired. I could always justify it as, “I’m tired.” “I just got off bouncing here, there, and everywhere on planes. I need some time off, need some rest.” If I had some numbness on my left side, especially into my left leg, and I would trip or stumble, I blamed the shoes. It was also the shoes’ fault, not the model’s fault. (laughs)
Rohe: (laughs) What was different about the time you were finally diagnosed?
Parker: Unfortunately, I went through a very, very rough bout of spinal meningitis, and that’s when the neurologist who was assigned to my case in the hospital said, “I want to make sure that everything has left your body. There are a few markers that are showing up in your spinal fluid from your spinal tap, and I want to make sure that it’s not meningitis.
When my doctor called, after I did all of these tests, it was him calling, not his nurse or his medical assistant, and he said, “I need you down in my office within the next hour.” I thought, “Oh, my gosh, what did I do? Did I do something wrong? Did I have one glass of champagne too much? What?” I’m running through silly scenarios in my head, and being relatively healthy growing all the way up and then walloped with this kind of diagnosis. I think it takes the breath out of you, it really does.
I still can hear my doctor telling me that, and the wind being knocked out of me, where I couldn’t speak. First of all, I didn’t know exactly what it was, but I knew it was something serious, and of course I looked up and he said, “You’re going to have this for the rest of your life,” and that’s when I started crying. I said, “You’ve just signed my death warrant! No one will hire me knowing I have this!”
A million things flew out of my mouth, and he said, “I want you to stop and take a big breath. We’re going to go through this.” How was I going to take care of myself for the rest of my life? The unpredictability of MS.
Rohe: Could you explain a little about RRMS?
Parker: Yes. There are basically—now they’re saying there are four, but there are basically three different types off multiple sclerosis. There is relapsing-remitting, primary progressive, and secondary progressive. Those are the top three. RRMS is when you go into remission or you suffer a relapse. You never know how long your relapse will last. Will it last a day? A week? A month? A couple of months? One never knows. Having this type of MS- all the things I was encountering, the vision loss, the numbness, the fighting, the waxing and the waning, I was going into a relapse and going back out into remission.
My doctor was very keen on all of the MS studies. I was diagnosed in January of 1998, and at that time, there were three FDA-approved disease-modifying drug therapies available. I consider myself very, very lucky, because had I been diagnosed back in 1993 or prior, there were none. Today we have 17 available. I’ve seen in my lifetime living with MS the evolution of so many new drugs and drug treatments, all of which are fantastic for an MS patient, however, none of them are a cure.
In general, no two MS patients are alike. We may have common symptoms, but I can’t tell you why today I can put on lipstick and a pair of heels and be OK and why tomorrow I may not be. We don’t know. Why were the lesions attacking my optic nerves, the nerves surrounding my eyes and my vision? Why was that the primary center? Why was I losing my vision? We don’t know. Disease-modifying drugs were very important because we wanted to slow the progression of the disease. If I had maybe three relapses a year, let’s see if we can cut it to two, and then let’s see if we can cut it to one.
My doctor told me that the three drugs that were available at that time were Avonex Interferon, Betaseron, and Copaxone. We called it the ABC’s. (laughs) I was put on Avonex Interferon. I remained on that until 2013, and my life changed because I was able to go off of Interferon and go onto Tecfidera, which is a pill, and that was a game-changer for me.
Rohe: What was the first one like if it wasn’t a pill?
Parker: Avonex Interferon is an injectable, once a week. It’s an IM, so the needle is as long as I am wide. (laughs) It is very painful, and the side effect was that I had the flu every single week. How does a model travel with this medication that needs to be refrigerated? How does she travel with these humongous needles? How do I travel with all of that and not be found out?
Rohe: My questions exactly.
Parker: Well, this is part of the big ruse. I sat down with my neurologist and we mapped out a plan of every single city I would be in throughout the year. A lot of times I would be in one city for six or eight weeks. We figured out Sunday nights were always good because Mondays were typically quiet days for me. Occasionally I would have a shoot, but not many. It would be a good travel day. So, my doctor would arrange for me to have my Avonex Interferon bloodwork, everything I needed to be done, at a hospital in every city that I was in.
Parker: I would sneak out of my hotel with no one seeing. I would have a taxi or car service pick me up, typically a car service was the best because they could wait for me at the hospital. This was about 2:00 or 3:00 in the morning. I’d get to the hospital, have my treatment, then get back to the hotel without anyone seeing me. There were a couple of times I kind of got caught, and I laughed it off. Some people who knew me were coming in from a night out and they all said, “Oh, we knew you were going out, you were hittin’ it!” I kind of wanted to say, “ Yeah, I was hittin’ it, but you have no idea where I was hittin’ it at!” (laughs)
Rohe: You never told anyone?
Parker: I couldn’t tell anybody because one of my drugs, the Avonex at that time, was $65,000 a year.
Rohe: Wow! That’s a lot for one medication.
Parker: And I had no medical insurance. I was an independent contractor. Models didn’t have a union. At that time, private insurance was really hung up on preexisting conditions. If I was to spend money, I needed to spend money on keeping me alive and not paying for insurance that wasn’t going to take care of me.
One of my drugs was $65,000 a year. The secondary drug was about $1,000 a month, that added another $12,000 into that mix. Plus a yearly MRI, either a spinal tap or other things. A neurologist is a specialist, and I have to see him once or twice a year. And because I was going into the hospital to have my treatment, that was extra money. I needed every modeling job to pay for this, and I took them. Nobody could know. Let me just preface this by saying, I had no shame. There was no shame in having MS. I think it’s shameful that as an MS patient I couldn’t get medical insurance back then.
Parker: But there was no shame. I was giggin’. I had to work. I also suffered having the flu and all my side effects on an airplane, on a tour bus, in a rental car and losing a day when I had them. In 2013 I was able to switch over to Tecfidera, which is a pill I took twice a day, I didn’t have any more side effects. I didn’t lose a day to the flu, and there were no more painful shots anymore. It was a game-changer for me.
Rohe: When you were on those medications, you couldn’t take painkillers?
Parker: There are lots of things you can’t do. You can’t drink. If you do, like a sip here or there of something, and I worked too hard for that medication! You can’t take painkillers. MS is a painful disease, so I managed my pain with acupuncture, which was very, very good. You can’t be out in direct sunlight. There are lots of things that come into play. One of the consequences is something that happened to me last fall and left me once again fighting for my life.
I had just, as I love to say, tore up New York Fashion Week. I was in the New York Times and had an amazing photo shoot at the Plaza. I had so many great things. But I was not feeling well at all that whole week. I look at some of those pictures now and I think, “Oh, good Lord!” Forty-eight hours later I was in the ICU fighting for my life. Flying home, I was in medical distress and when I got off the plane, my husband met me. He had called my doctor and I was rushed to Mayo in Scottsdale and immediately put into ICU. I was in complete liver failure.
The proper term of what happened to me is hepatocellular injury to the liver, which is basically a toxic level where I killed part of my liver. Unfortunately, it was due to my MS medication. Would I still advocate for anybody out there who is newly diagnosed. You get on a drug therapy program. You want to make sure you get a handle on this disease before it handles you. I would still advocate for that. It’s just that my body, after 21 years of taking an MS drug therapy, is done. It can’t take it anymore. I now am going to need a partial liver transplant to fix the hit that my liver took due to my MS medication.
Rohe: If medication is out, what other kinds of things are you doing?
Parker: Well, one of the best things that has come out of this is that I will never give up. I won’t ever give up. So I got a little setback. At least when I was in the hospital, I had my monogrammed pajamas on. I was trying to be cute (laughs) and be comfortable! But moving forward, what am I faced with? Well, I’m not giving up. I am getting up. That’s one of the things I live by The chance will always be there to succeed if you just get up. You can try a hundred times or a thousand times, and you may fall down a hundred times or a thousand times, but the chance will be there that you can get up. Just try. If you give up, that chance is forever gone.
So in getting up, I have surrounded myself with a great team of doctors, my amazing supportive husband, who is the best part of my every day, and we have also hired someone. He’s not just a personal trainer, but he’s a certified life coach. He comes twice a week and works out with me because I have so much atrophy in my body right now from MS. And not being able to move, he works with me on keeping the blood flowing, keeping everything going, from my head to my toes and all the way back up. His name is Michael Kapp. He is a true godsend. He understands the challenges that my body goes through. I won’t ever say “can’t do.” Sometimes my leg just won’t bend a certain way. I don’t know why, but after working out, it will bend a certain way. That’s not giving up, that’s getting up.
Rohe: Wow. That’s amazing!
Parker: Yeah! (laughs)
Rohe: Is that, in part, what propels you to be a motivational speaker?
Parker: Mm-hmm. One of the things that I learned from my parents, and it is a mainstay today, is that giving is the best medicine around. Doing for others is the best medicine around. I came out and shared with the world about my MS diagnosis and how long I’d been living with it in an initial article back in 2009. I was besieged with letters, phone calls, you name it, and I thought, “Well, I’m not an athlete, I’m not running 26 miles.” The only time you’ll see me run is if there’s a great sample sale at Bergdorf’s (laughs) And then it’s just a very fast stroll.
My speaking is much more about awareness. I am just like everybody else. I have trials and tribulations in life, highs and lows. Whether you’re sick or not sick, whether you’re a caretaker, whether you know someone who is ill, whether you know someone with MS, you will gain strength in my message. Every chance I get to speak—I would say 90% of them have been specific MS fundraisers. I won’t ever profit off this disease. If someone wants to make a donation or give something to me, while I love that, I would prefer more people benefit from that donation. I don’t charge a speaker’s fee. I also pay my expenses as well as all of the expenses for my entire team that travels with me.
I buy tables or seats. I never ask for a free seat. I fill them with my friends who are all over this country. They come. I also donate my own money on the floor at that event as well. I’m so passionate about this because the more awareness, the more people see and hear my story?While I think it’s great we have 17 new amazing drug therapies out there, I’m one of those patients now who needs a cure— and fast!
I always used to say before what happened to me last fall, “Of course I want there to be a cure. I’m hoping to maybe see a cure in my lifetime.” Boy, that message has completely shifted since last fall. If someone were to call me selfish, yes, I am selfish because I want to get to a cure. But that doesn’t mean my fundraising and my message will go away. I will still be an advocate, and “MS warrior,” as I’ve been called by many, many, many friends. I will still be very passionate that today is a great day, tomorrow maybe not so much. If I can just take advantage of my gifts that I have today and what purpose they can serve. If I can raise funds and awareness, then that is the best thing I can possibly do.
Rohe: You remain so positive in the face of such uncertainty.
Parker: Thank you! That means so much because I have many people say, “What would you know? You’ve only known being a model. You’re beautiful and pretty.” You know what? I check that really fast and say, “I am someone’s wife. I am someone’s daughter. I’m a stepmother to children, and I’m a grandmother, a godmother. I’m a friend.” You shouldn’t ever have to see someone go through what I’m going through.
When the National MS Society came out with a big platform, “My Invisible MS,” I am THE poster child for that. (laughs) You can’t see my liver. You can’t see my eyesight. My incredibly talented husband, Robert McCulloch, is a profound eye surgeon here in the state of Arizona. He employs the only neuro-ophthalmologist in the entire state. And between the two of them, they operated on both of my eyes and gave me the gift of sight.
Rohe: What a gift!
Parker: I had MS-related cataracts, and I now have what’s called a “symfony lens” in both eyes, a new lens in each eye, and I can see beautifully.
Rohe: That’s amazing!
Parker: He gave me the gift of sight, and I give him lots of kisses. (laughs) And hugs and laughter. Definitely a lot of laughter. He’s very, very supportive and very dedicated.
Rohe: What advice would give to someone diagnosed with MS?
Parker: The number one thing I’ve been asked is, “What do you recommend? What’s your secret?” Well, it’s not a secret. Number one is surrounding yourself with a good team, i.e., supportive friends, excellent doctors whom you can always ask questions?they’re never bothered by you?a good nutritionist. And don’t say what your limitations are. You always want to say, “What am I going to achieve next?” Because everybody has a bad day. Why put a little marker on it? Rather than a limitation, how about “limitless”?
Constantly seeing small things and making small changes. Acupuncture works for me. It may not work for everybody. Some people are more about taking supplements. You have to be really, really careful that they don’t interfere with your medical protocol if you’re on a drug therapy. It’s finding a good balance. Also, from what I’ve learned along my travels and speaking, I’ve heard a lot of MS patients suffer with depression. I am not one of them. I’m thankful for that. However, I do recognize that you can’t wait. Get into a good therapist. You must get help. There’s no silent suffering. You cannot let the depression wave over you. That is the worst thing you can allow your body to go through.
Sometimes it can be daunting, looking online and hearing so many sad stories. “If this worked for this person, why can’t I do it?” Well, it may not be the right choice for you. Again, embrace what’s around you. It doesn’t mean you have to have a ton of money. There are great resources out there that are free or on a sliding scale. A majority of the drug manufacturers now have a patient co-pay assistance, which did not exist back when I was having to pay full price. We’re talking anywhere from $10 to $50 a month depending on what medication. You call them right away. It doesn’t matter how much money you make, they do have a lot of co-pay assistance, which I think is fantastic. It’s very good that the pharmaceutical companies are doing this.
Rohe: Cost can be a huge factor in treatment. I saw on your Instagram a moving poem that had caricatures of you.
Parker: Oh, yes! Oh, my gosh! By Scott Clark, yes! (laughs)
Rohe: Can you talk about that?
Parker: I was honored earlier this year by an incredible theater company called the Invisible Theatre. They bestowed upon me the Guest Artist of the Year Award and also the first-ever Edith Head Style Award. Edith Head was an amazing woman. She has won the most Academy Awards of anyone in the entire world, in history, for costume design. The Invisible Theatre has bestowed its Guest Artist Award to luminaries such as Lynn Redgrave, Lucie Arnaz, Rain Pryor, Richard Pryor’s daughter, Sandy Hackett, Ann Callaway, incredible, multi-talented, multi-award-winning actors and actresses. To have been bestowed something so special was amazing. And then given the first-ever Edith Head Style Award in addition was an amazing weekend.
They reached out to the artist, Scott Clark, who did the caricatures of me. He wrote that poem about me, after doing a little bit of research. What’s so beautiful about that is that Scott and I never met. I had no idea that the company had gotten him to do this. He does Cher and Dolly Parton! Big people, not me! Consequently, seeing that, I burst into tears. I thought it was so personal, so moving. He was spot-on in how he read that. And of course his caricatures were just dynamite. Subsequently we’ve become friends because of that.
That amazing piece is sitting in here in our scenic home, beautifully framed. I didn’t know that my message and my walk up until this point touched people I didn’t even know. That’s what Scott portrayed in all of that. I’m so glad you thought of that! (laughs)
Rohe: It can be eye-opening how far and wide the impact of your message has.
Parker: Yes, definitely, just don’t give up, you can get up. My husband always says, “You know I’m your biggest cheerleader.” I’m usually his cheerleader, but he is my biggest cheerleader. He always tells me, “Success by the inch is a cinch. By the yard, it’s hard.”
Rohe: Great words to live by!
Parker: Yes, yes!
Rohe: I wanted to ask you about your love for your dogs, if it’s not too hard to talk about it.
Parker: We just lost our precious little Lulu a month ago. Our little mini doxies are both rescues. I had gotten Lulu from a puppy mill rescue. She was six years old, and she was 15 when, sadly, she passed very suddenly and very unexpected. I don’t think anything can prepare you for that loss. And Squirty, little pistol that she is, she is a little treasure. She keeps us hopping. She came into our life in 2009 and is quite the character. She loves to swim. Both the girls, when Lulu was alive, have accompanied me to sets and shoots. They have their own fan club. (laughs)
One thing I miss dearly about Lulu is that she was my protector. Squirty was the snuggler, and Lulu was the protector—I would pick her up and put her in bed and she would lie at the end of the bed, always watching the door, always wanting to protect me. I have a protector and angel up there. She’s watching out for me still. Both these little girls offer so much joy and happiness, even on the darkest and stormiest of days. They love you no matter what. I think the reason why animals don’t live as long as humans is because animals are born already knowing how to love. Humans don’t know how to love. It takes us longer to learn how to love, where animals love from day one unconditionally. When they feel you’ve reached your full capacity of love, then heaven calls them back.
Rescue animals are the only way to go. They know about a second chance in life, better than anything. We will start looking for a new little sister for Squirty. She’s very lonely. (laughs)
Rohe: I agree with you wholeheartedly.
Parker: And they have fabulous wardrobes! (laughs)
Rohe: (laughs) What kind of wardrobes do they have?
Parker: In each of our homes, the laundry room acts as a second closet for the girls. They have hoodies, coats, parkas, cute collars, of course holiday attire, college football game day attire. You name it, they have it. They have little life-jackets that are little shark fins so I can pluck them out! (laughs) I have all of them hanging up. I think one of my favorites is their Juicy Couture velour hoodies because let’s face it, they are the perfect size to say Juicy. I don’t think anybody else should be wearing Juicy along their assets, if you know what I’m saying. (laughs)
Rohe: What other things would you like people to know about you?
Parker: Well, that’s a great question, and I’m glad you asked that. I’ve been told I have a phenomenal sense of humor. I can find humor in anything, and I will make people laugh, laugh, laugh, laugh—like belly ache rolls, just by telling a story. (laughs)
Rohe: Laughter is great!
Parker: I do have a very cool book that I’m in the final stages of getting tweaked a little bit. We’re looking at hopefully next spring or early summer launch. It’s a tell-all book of how I found myself single and dating again at the age of 48 and how I met my husband. It has stories about all of my hilarious, but hellacious first dates. They are quite funny. (laughs)
Rohe: (laughs) Can we get a sneak peek at the title?
Parker: The working title is Memoirs of the Model Dater. (laughs)
Rohe: Fantastic, that’s a perfect title!
Parker: It’s a very tongue-in-cheek, laugh-out-loud, anybody can relate to it—about how I would talk to myself going, “I wasted lipstick and perfume on this date? This is not good.” (laughs) And ultimately, meeting my husband. The book will be of course dedicated to him. And again, it falls right in line with never, never, never give up. You’ve got to get up and do something you’ve never done before.
Rohe: That is such a good message!
Parker: Exactly. Never give up! And it’s a choice. You can say, “I’m going to give up.” That’s a day wasted. Your chance is gone. Why? If you wake up every morning and say, “Guess what? The chance is there!” Those are pretty good odds, in my book.
Rohe: Yes, they are! Where will we see you next?
Parker: My gosh! Most definitely you’ll see me at New York Fashion Week and Paris Fashion Week. Also, I’m going to be on several television shows, some fall line-ups with some talk show appearances. We’re getting those confirmed as we speak. People can always find me on Instagram. Instagram is where I let people in and see the latest stuff. I’m very guarded as far as a few things. But definitely join me on Instagram or open a magazine, you’ll find me! (laughs)