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“I Am My Own Twin”: Model And Musician Taylor Muhl Comes Out As A Chimera

Health

Taylor Muhl is her own twin. No. Really. Unbeknownst to her, at the beginning of her pregnancy, Muhl's mother had two fertilized eggs in her womb. But, at some point in the pregnancy, the two fused, creating one fetus with two complete genetic codes, that is, two completely separate strands of DNA. That is the definition of chimerism. Taylor Muhl is a chimera.


Muhl has two immune systems – hers and her sister's. Hers is constantly trying to rid itself of the “foreign" system. But, of course, it can't. The result? Autoimmune issues and flare-ups, as well as a variety of allergies. Muhl has two blood streams as well and a line down the center of her stomach, one side of the line darker than the other. The darker skin tone is her sister's.

It took Muhl many years to want to tell her story. For one, she says, because she only found out a short time ago. “For more than half my life I didn't even know I had chimera. I was told I had a birthmark. My mom was like a flower child so she had me naturally at home with two mid-wives. Her whole pregnancy she ate all fresh, healthy food, no caffeine.

Photo Courtesy of Keith Berson

She went above and beyond to do everything right. So, when I came out and my stomach was like this she was immediately like, 'What did I do?' The midwives had never seen anything like it. They said it would probably go away. They took me to the doctor a few months or a few weeks later and it was the same thing. It must be a birthmark. They said, 'It doesn't look like its causing her any pain.' So, my mom just went with it."

But there were other signs too, like Muhl's obsession with being a twin. “From six or seven-years-old, I would ask my mother all the time if I was a twin. 'Are you sure you didn't have another baby?' I would ask her. Many years later, my mom told me she wondered back then, 'Where is this coming from? Why is she asking me this?' I had a friend who was two years older who basically lived with us for eighteen years. I insisted on everything being the same with us – clothes, hair. And if she did it, I had to do it too. I did that with lots of other friends too until I was fourteen or fifteen-years-old."

Muhl is in her thirties now and says she didn't really think much of the line down her stomach when she was a kid. “I never really noticed it. It wasn't until I was a dancer around eight, nine, or ten that I realized why doesn't every body's stomach look like that. Mom said you're just special. If we went out into public, as I got older she made sure it was covered so no one would say anything and upset me."

But when she was in her early teens, she started getting sick all the time and no one could figure out why. Doctor after doctor would turn her away with a shrug and a, “We just don't know." “I started having autoimmune issues. I'm very sensitive food and medication. I'm allergic to bug bites on one side of my body but not the other. My belly button piercing is on twin's side and I can wear any jewelry in it. But the earrings on my side, I can only wear white gold because my skin is very sensitive."

Many years later, after extensive testing, one doctor finally figured it out. Muhl is a chimera. Interestingly, not every person with chimerism has the same issues and symptoms. Every case is different, which is what makes diagnosis and management so incredibly difficult.

Photo Courtesy of Keith Berson

“After all of these tests we discovered – and this is crazy - my immune system is as low as a cancer patient, but I'm not 'sick.'" She is, however, allergic to nearly everything. After being tested for 150 different allergens, only a handful came back negative. Shellfish, she says is the only thing that seems to give her life-threatening symptoms, the rest cause varying degrees of discomfort. So, she says, “I do a rotating schedule in terms of eating and drinking so as to not expose myself to too much of anything at one time."

How does she handle it all? Well, she says, as holistically as she can. “I was raised very naturally and because my body is so sensitive to medications, unless I'm really, really sick, I do things holistically. That's what really, really helps me. I have to eat all fresh organic food. I have to juice multiple times a week. I'm taking tons of supplements. I've been a dancer for twenty years. So, I'm very into exercise, which helps. I do have to be on birth control because of endometriosis, which is terrible for autoimmune issues because birth control lowers your immune system. And I do suffer from horrible migraines. So, I will take an Excedrin if I have to."

Once she had the diagnosis, Muhl still kept the information mostly to herself, sharing it only with family and friends for the past seven or eight years. “Being in music and modeling and entertainment, I was scared of losing or not getting jobs. If they find out you're sick, they're not taking a chance. 14 hour days, all night shoots, big investors, I could be considered a liability," she explains. “My career was so important I never wanted it to hold me back or limit an opportunity."

But the secret became too much to bear. So, Muhl decided it was time to come clean no matter what the consequences might be. “I got to the point of – what am I doing? If people don't want to work with me, then it's not the right thing for me. Right people will come and wrong people will go their way. I can't pretend that my autoimmune system is ok and that my stomach looks like everyone else's."

She also felt a strong pull to raise awareness about this little-known diagnosis. “There's a reason I was born this way and maybe it's to help or inspire people," Muhl says. And it's already working. After having appeared on the show The Doctors, Muhl started hearing from all kinds of people with all kinds of stories.

“I feel very grateful that my story is being shared. I have so many men and women who reach out to me. They say, “'You make me feel beautiful.' And that's the whole point, not just to help someone who may be a chimera but also to spread body positivity. I know there are a lot of women out there doing that and they are amazing. But there is no one has out there with chimerism doing it. So, it might as well be me."

Her coming out had another interesting – and personal – benefit as well. Always one to look on the bright says, Muhl explains, “When I went on the Doctors show it was like – I'm free! Now when I date a new guy I don't have to worry about telling them anything like that I wear hair extensions because my hair has gotten so thin because of the auto immune issues."

Of course, plenty of judgment and rejection followed her appearance and coming out as well. But even that didn't faze Muhl. She's glad she made the leap out into the public eye. “It feels freeing even though the negativity can be scary at times. It doesn't matter what you do in life, people are always going to judge. Family judge family. It's just life. And if you're doing it publically, it's going to be magnified. I've gotten an overwhelming amount of stuff and nasty stuff as well. You really do have to know that that person is where they are and they are entitled to their opinion.

Others who are really insecure have to find a way to put others down and I have no judgment against them. It's hard to put yourself out there. Some people are not comfortable with different. I'm ok with the hates because that's just where they are in their life. I don't know their story. You just have to focus on doing your best and being who you are." Muhl is a beautiful example of doing just that.

On an interesting side note, Muhl's grandfather was the VP in charge of production at Universal Studios for more than 30 years. She loves to share that tidbit because she says, she is insanely proud of the work he did. But she does want to set the record straight as rumors began to fly as soon as she shared that part of her family history. “I have never had a dime from my grandfather or any other family member. I have never had any handouts from anyone in the business. My grandfather started at the very bottom sweeping floors.

He is a self-made man who came from nothing. He was the simplest man. He had so many offers to do all of these amazing things and he really only took the ones he had too because of obligations. When he passed away, he left my dad and some others very little money but none of that came to me. It's been really frustrating that people think I'm taking advantage, as if I'm filthy rich and getting all of these handouts. People can say what they want, but this is the truth. I'm just honoring him for his work in the arts. I want him to be recognized for everything he's done."

Part of sharing her story had to do with people's responses to her coming forward and appearing on The Doctors. “So many people have said, I can't be a chimera because I'm in the entertainment business. 'She must be a fake because she was so comfortable on stage.' If I was a school teacher, then could I be a chimera? If I worked at an animal hospital? People who are the business are real people. Just because they are in the business doesn't mean they don't have diseases.

That's why I wanted people to know who my Grandfather was and that I've been in the business." But no matter the rejection, Muhl lets it just roll off her back. She says it's all part of being in the entertainment world. “I'm kind of like a firecracker. I've been in the entertainment biz for so long and rejection is such a big part. So, I have a very thick skin."

Taylor Muhl is her own twin. Her condition may be a tough one for people to wrap their heads around. But her message is a simple – yet powerful - one on so many levels. Be yourself. Be strong. Ignore the naysers. Be true to yourself. And – above all else - share your story – it just may be someone else's story too.

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Business

My Untold Story Of Inventing the Sports Bra And How it Changed the World (And Me)

Following are excerpts from "Unleash the Girls, The Untold Story of the Invention of the Sports Bra and How It Changed the World (And Me)" By Lisa Z. Lindahl


There is an idea that has popped up everywhere from Chaos Theory to Science Fiction and New Age memes known popularly as the "Butterfly Effect." Simply put, it is the notion that one very small thing—the movement of a butterfly's wing say, or the ripple in a lake caused by a pebble being thrown into it—can cause tremendous effect far away: the butterfly's wing a tornado, the ripple a large wave on a distant shore. Cause and effect, does it have limits? The field of physics is telling us that it takes only observation to bring a thing into being. We cannot consider these areas of investigation and not acknowledge that everything—everything—is in relationship in some way or another with everything else.

So, it is evident to me that commerce of any kind is, also, just about relationships. It all boils down, on every level to this simplicity. While we usually think of relationships as occurring between people—it is far more than that.

I used to teach a course in entrepreneurship specifically for women in The Women's Small Business Program at Trinity College in Burlington, Vermont. I made this concept of relationship and its importance central in how I taught the marketing thought process. I would stress that for a product or service to be successful, it had to meet a perceived need. There is a need, and it wants to be met; or it may be thought of as a problem to be solved. Or there may be an existing solution that is less than adequate.

For example: In my universe as a runner there already were a plethora of bras available, but they were inadequate for my purpose. The relationship between my breasts, my running body, and my bra was creating discomfort and distraction. A new solution had to be found, the relationship occurring when all these things came together had to be fixed. Utilizing this point of view, one sees a set of issues that need to be addressed—they are in relationship with each other and their environment in a way that needs to be changed, adjusted.

Nowhere is this viewpoint truer than in business, as we enter into more and more relationships with people to address all the needs of the organization. Whether designing a product or a service or communicating with others about it—we are in relationship. And meanwhile, how about maintaining a healthy relationship with ourselves? All the issues we know about stress in the workplace can boil down to an internal balancing act around our relationships: to the work itself, to those we work with, to home life, friends and lovers. So quickly those ripples can become waves.

Because Jogbra was growing so quickly, relationships were being discovered, created, ending, expanding and changing at a pace that makes my head spin to recall. And truly challenged my spirit. Not to mention how I handled dealing with my seizure disorder.

"My Lifelong Partner"

Let me tell you a bit about my old friend, Epilepsy. Having Epilepsy does not make any sort of money-making endeavor easy or reliable, yet it is my other "partner" in life. Husbands and business partners have come and gone, but Epilepsy has always been with me. It was my first experience of having a "shadow teacher."

While a child who isn't feeling she has power over her world may have a tantrum, as we grow older, most of us find other more subtle ways to express our powerfulness or powerlessness. We adapt, learn coping mechanisms, how to persuade, manipulate, or capitulate when necessary. These tools, these learned adaptations, give a sense of control. They make us feel more in charge of our destiny. As a result, our maturing self generally feels indestructible, immortal. Life is a long, golden road of futures for the young.

This was not the case for me. I learned very early on when I started having seizures that I was not fully in charge of the world, my world, specifically of my body. There are many different types of epileptic seizures. Often a person with the illness may have more than one type. That has been the case for me. I was diagnosed with Epilepsy—with a seizure type now referred to as "Absence seizures"—when I was four years old. I have seen neurologists and taken medications ever since. As often happens, the condition worsened when I entered puberty and I started having convulsions as well—what most people think of when they think of epileptic seizures. The clinical name is generalized "Tonic-clonic" seizures.

In such a seizure the entire brain is involved, rather like an electrical circuit that has gone out as a result of a power surge. I lose consciousness, my whole body becomes rigid, the muscles start jerking uncontrollably, and I fall. Tonic-clonic seizures, also known as "grand mal" seizures, may or may not be preceded by an aura, a type of perceptual disturbance, which for me can act as a warning of what is coming. The seizure usually only lasts for a few minutes, but I feel its draining effects for a day or two afterwards. Although I would prefer to sleep all day after such a physically and emotionally taxing event, I have often just gotten up off the floor and, within hours, gone back to work. It was necessary sometimes, though definitely not medically advised. I'm fond of saying that having a grand mal seizure is rather like being struck by a Mack truck and living to tell the tale.

Having Epilepsy has forced me to be dependent on others throughout my life. While we are all dependent upon others to some degree—independent, interdependent, dependent—in my case a deep level of dependency was decreed and ingrained very early on. This enforced dependency did not sit well with my native self. I bucked and rebelled. At the same time, a part of me also feared the next fall, the next post-convulsive fugue. And so I recognized, I acquiesced to the need to depend on others.

The silver lining of having Epilepsy is that it has introduced me to and taught me a bit about the nature of being powerless—and experiencing betrayal. I could not trust that my body would always operate as it should. Routinely, it suddenly quits. I experience this as betrayal by my brain and body. It results in my complete powerlessness throughout the convulsion. Not to mention an inconvenient interruption of any activities or plans I might have made.

Hence, I am the recipient of two important life lessons—and I was blessed to have this very specific and graphic experience at a young age. It made me observant and reflective, giving me the opportunity to consider what/where/who "I" was. I knew I was not "just" my body, or even my brain.

So, who or what did that leave? Who, what am I? Much has been written about trauma, and about near-death experiences, both of which seizures have been classified or described as. I won't delve into that here except to say that experiencing recurrent seizures and the attendant altered states of consciousness that sometimes accompany an episode (the euphemism for a seizure) changes one. It deeply affects you. It is both illuminating and frightening. It opens you up in some ways and can close you way down in others. For me it made it easy to consider the possibility of other ways to perceive, of other realms. And as an adult I became interested in quantum physics, where Science is pushing and challenging our long-held perceptual assumptions. Me, who was poor in math and disinterested in Science while in school! So if not merely body and brain, who am I? Spirit. And with Epilepsy's tutelage, I was encouraged to question, seek, try to understand what lies beyond.

Living with Epilepsy has also given me great strength. In realizing the futile nature of trying to have "power over" Epilepsy, I developed a deep well of "power within"—that inner strength that comes in the acceptance of that which one cannot change—and looking beyond it.

Through my experience building the business of Jogbra with the unique lens afforded me by my Epilepsy partner, I came to understand more fully the nature of power and what it means to be truly powerful.

Specifically, that having power and exercising it is not simply a manifestation of the ego. It need not be "power-tripping." It is how I wield my power that matters, making the all-important distinction between creating a situation of power over, power with, or empowering and having and creating strength in oneself and others.

Being powerful is a big responsibility.

To put all this another way: do I choose to create situations in which I am able to wield power over others? Or do I choose to empower others, sharing my strengths with them, while nurturing their strengths as well? The first is not true power. It is control. The second I believe to be the essence of true and positive power: strength. And integral to creating a more harmonious world, oh by the way.

While this may be apparent, even basic to others, it was an "aha!" moment for me. Too often in the years ahead I would give away my power and question my own strengths,. Time and again, however, my inner strength, my shadow teacher's gift, helped me survive and thrive until I could take responsibility for and embrace more fully my own power.

© Lisa Z. Lindahl 2019