Emily Mackenzie

In May, I read a news story about a high profile documentary on a woman in her post-breast cancer journey. I reached out to both the survivor and the filmmaker, but in the end, connected profoundly with the filmmaker, Emily Mackenzie, around the complex breast cancer and reconstruction conversation. Oddly enough, Emily grew up in Santa Barbara just blocks from where I currently live. I asked her to meet up to discuss her documentary, “Scar Story,” the next time she came to town. Unbeknownst to me at that time, it turned out that Emily was in the middle of a significant last cut moment in her life, as the film she had set out to make needed to go back to the drawing board for reasons she couldn’t have predicted. When we met at her childhood home during Fiesta weekend in August, Emily shared a series of last cuts she has made in recent years to bring her life more in line with her true passion for documentary making. She also reflected on how growing up in a small town with a sister with severe cerebral palsy has shaped her perspective on life. She welcomed us into her home and showed us her secret “weeping wall” where she would go as a child to reflect. Even though she has no direct personal history with breast cancer, Emily has taken on the many layers of the disease with passion, empathy and a strong feminist lens. I loved our banter on the nuances of reconstruction and the feminine identity, and have no doubt her documentary will be as bright and inquisitive as she is.

Do you want to start by introducing yourself and telling us a little bit about who you are and what you do?

"I'm Emily McKenzie. I am from Santa Barbara, where we are sitting right now, but I live in New Orleans, Louisiana. I'm a producer, amongst other things, of non-fiction work--documentaries, etc." 

What are you working on now?

"It is a saga how it has evolved, but right now I am working on a documentary about breast cancer. More specifically, what I am interested in is the fact there is a strange representation of breast cancer. The pink thing. The pink washing issues. You know all about this."

But it is great to hear this, because I haven't really talked about any of this yet [on Last Cut].

"No?"

No, I haven't. I've enjoyed reading what you've written because it is something that I feel.

"Yeah. Well, I think there are so many things that I think are problematic. I get on a war tirade about it. All of this strange pink imagery and capitalizing on women's bodies, women's bodies that are sick, with yogurt tops that are pink and the NFL wearing pink sneakers while they are playing so that everybody thinks they are friendly towards women. That's a bunch of bullshit. What's really scary and sad to me is that the rate of breast cancer diagnoses is higher than it ever has been. One in eight women will have it."

That's insane.

"In the 20's, it was around one in twenty women. Now, one in three women will die from it, which is the same mortality rate as it was in the 1970's. So all of this campaigning, all of the "awareness," it's bullshit. It is not helping anybody, and it is patronizing. It's all wrapped into these issues of women. It's really bullshit. Sorry, I keep swearing. I get so mad."

That's ok! We swear too. 

"So for me, I guess, what really interested me is the politics around reconstruction and what you do with your body. Body politics is a thing. What is that famous piece of art? The photo with the words, "My body is a battleground." That photo, when you are talking about women's bodies, says that everyone is allowed to have an opinion. What they should and shouldn't do with them. How they are supposed to look. What's going on? So breast cancer becomes this interesting intersection to talk about feminism to me. Body policing. How does this work? What is expected of us? I got super fascinated with the question of reconstruction and why people do it and don't do it. What I learned last week from [another woman who had a mastectomy's] surgeon is that 58% of women don't have reconstruction or ultimately end up without having reconstruction, so maybe they went through it and their bodies did not react well. So the majority, by a slim margin, but still the majority of women who had mastectomies or lumpectomies or whatever, doesn’t rebuild, which I didn't know. That stuns me. So that means there are women walking around maybe wearing prosthetics, or they are just invisible to us."

That's interesting to me because when I made this decision, I did have a good friend of mine in LA tell me about someone who had done the same. People came forward. They just don't walk around with nothing, they put in the chicken cutlets or whatever they call them.

"The foobs."

Yes. We call mine the noobs. No boobs.

"That's great."

Unfortunately, during my recovery, one side was collecting some fluid and I had to go down to LA and get that drained. So, at that point, it was called the woob because it was wobbly. [laughs] Once, everything was healed up, then it was the noobs. [more laughter]

"I think it is so offensive too, because of the pink. If there's a taking away of a part that is identified as feminine, then let's attach a color to it that is thought to make you feel girly.

If you are already having a crisis where you have to encounter your own mortality, you have to go through being sick, go through chemo and radiation and be sick for a long time. It's terrible, and then to have this thing thrown in your face "just to remind you what being a woman is." "Just don't forget." It's like, “Please can I just have some privacy to consider my own life and manage these other things that are significantly more important than your understanding that I am still a female in this world, or whatever this is?” It's strange. I just think it is very strange.

But, I've just been meeting so many rad ladies who opted out of reconstruction or had it and their bodies rejected it, like your story. It's been really cool. It's been very interesting. I admire them so much. Cancer for a lot of women happens so fast. You are diagnosed on a Friday, and one week later you are having surgery. There is no time to sit around and consider, “What do I want to do with my body? How is this all going to work?”"

It just happens.

"Yeah. So I feel kind of grateful if ever I have breast cancer [knocks on the table] that I have thought about these issues. What will I do? Will I have reconstruction? Will I not have reconstruction? What does that look like? Ok. Cool. I'm glad that that decision I [would now] understand."

Well, I think it is interesting too. I certainly don't recall anyone saying, "Do more reading about what we are about to put in your body, or here is what they are actually made of." I feel as though it's just this blanket, "Oh, these used to be really toxic but now they've redone them after being removed from the market," which is not the whole truth. "Why would we put them in so many women if they weren't safe?" That's right up there with the pink. It's this assumption that it shouldn't matter because it is going to get you physically looking a certain way, like a woman, and that should override anything else. I was not told at all what I was getting into. I had thyroid cancer when I was 21 and tested positive for the BRCA1 gene. My mom had breast cancer in her early thirties.  There are links between thyroid and breast cancer. I had my daughter in 2007 and, by the time she was six or seven months old, I was fed up with having to go every three months to have an MRI. It was the broken record of "It's time to go get tested again." I had just spent a good part of my twenties dealing with panic attacks and migraines because I don't think I every properly dealt with having cancer my senior year of college. Emotionally, it all just started to explode in my face.

So I started to ask the questions [about mastectomy]. The conversation with my doctor and those close to me at the time was "Well, don't you want to look normal?" "Don't you want your daughter to look at you in the shower and identify with you in that way?" And so on and so forth. Looking back, I take full responsibility. I asked the questions. I knew some people use some of their own fat for reconstruction. I asked about that but was told I didn't have enough body fat to use, that I'd look like a shark bit me in the leg. So I was told that implants were the best option and that they'd feel the most real, and that, if we are going to make our list of the fallacies, that is bullshit. For me at least, I am super thin on top and I felt as if I had two boulders in my chest. I never could sleep well. The list of things that didn't feel right was huge. So I am fascinated by what you are doing from that perspective too. I think we are sold short in that decision process in not getting full information. Even when you Google for the ingredient list of implants, you cannot find them until you dig deep into the FDA's report.

"Which is nuts."

It is nuts! I'm really sensitive. After having cancer and migraines and everything else, I have to treat my body like a machine and there's not a lot of wiggle room. I would have half a glass of wine and the next two days are kind of ruined for me. It's gotten better since I've had my implants out; I think my implants actually made me allergic to alcohol. Now I don't feel sick, but can still notice the difference. So then, having all those chemicals in my body…

"Leaching into your system..."

Yes.  There are so many breaks in the logic about how the whole system is operating. I haven't used Last Cut as a platform for that because it is not exactly what I am trying to talk about, but it is obviously a fundamental part of my story as well. So, I think it is great what you are doing because it is a topic of great importance and I think it needs to be highlighted and looked at from many angles. So thank you.

"Yes. Absolutely. It is really, really important. It is a feminist issue. If this is how my sisters are being treated, it is all part of the same standards that make my life hell, too."

Right.

"It's all one and the same. It is all symptomatic of the deeper sickness."

It is interesting, too, the film you were trying to make and your experience of reworking it into what feels like a better fit and the racial politics, the feminist politics, the election. You couldn't have your finger on more of the pulse in terms of what people are anxious and fearful to try and figure out and push change.

"Yes. My aunt had breast cancer, but that was before I was born. It is an interesting thing. Now I'm off in this world. It has me wondering what the fates are going to deliver next, without getting too woo woo about it."

I almost think it is better to have the fact that you aren't personally in this moment in time so rocked [by the subject]. In a bigger sense, it gives you a very rational, unbiased voice and obviously the ability through your profession as a producer and a documentary, nonfiction filmmaker to connect with people. So you have these two things that I think brings life and a voice to a subject that often is deflected to women as being one that is emotional. I have had these things said to me repeatedly, “Maybe you are just sensitive,” and maybe I am.

Yes, but what is wrong with that.

Right. Right.

"It is a gift to be sensitive."

Yes, it seems to be me that there are a lot of other women who are sensitive too. I believe it is our right to have full information about what we are putting into our bodies. I think that having been brought to the subject matter from a bit of a distance is a huge strength as you navigate the next iteration of this film.

"I have millions of questions to ask people so with everyone that I speak to, I say, “Tell me your story.” I then follow up and ask for more when I do not understand. If it were two insiders talking about the subject [of breast cancer or implants], there would be a lot of short hand, but with this, I don’t know anything so I have to keep asking questions. So that’s good because when I turn around to make the film, my explanation will be more comprehensive and will be for people like me, lay people who do not have an actual, personal relationship [to the subject matter]. It is very funny, strange and weird, as I am suddenly the “breast cancer person” in my friend group. They are all wondering, “Why are you? What’s going on here?” I don’t know. It is curious, very curious."

Curious and incredible.

"Yes, I wish that there were more visibility for the Flattopper or the flat look. I am stunned by how infrequently you see it. Once you visually have eyes on that, you get used to it so quickly. I was with Emily and this gal, Kai, filming them in the woods, and they took their shirts off because it was a really hot day. It didn’t even phase me, but then I saw people coming towards us and they were just gawking. “What is that?” It took me five minutes to get used to their look, and if we saw it more, no one would care. It does not have to be so stunning."

No one blinks when a man takes his shirt off. It is the same with breastfeeding in public being sexualized. That is where, again, I believe the way you are coming at this is a way to enter into a discussion around a much deeper, bigger problem in the way that our society is telling women how to manage their bodies.

"I am still in the phase of talking with people and trying to figure out how to put this all together in a film. I could show women moving through their daily lives, because the visibility factor should shift perspective too." 

In my final appointment with my doctor, he asked about my interest in getting nipples tattooed.  He explained that children tend to identify with the nipple as a marker of normalcy, more so than the size of the breast. It came up with my daughter and she said to me, that nipple or not, to her, “I am just mama.” In my experience, all of the build up around what would be normal actually felt the opposite in my body. I put on blinders and did not fully allow myself to focus on that part of my body and how alien it felt. I am very excited to see what comes of this film. It is a needed message from many angles. There are so many layers to it.

"A lot of people that I have spoken to have said that their surgeon won’t even do a mastectomy operation unless you have had a consult with a plastic surgeon. If you don’t want to see a plastic surgeon, they think something is wrong with you. I met one woman who had to change surgeons because her surgeon refused to operate on her unless she saw a plastic surgeon first to make sure she was of sound mind."

Lisa: That is the same as the requirement to see a minister before having an abortion.

"Exactly. It is the same thing. It is bananas."

My doctor asked me over and over again, “Are you sure you want to remove your implants?” He said that he has had women, who have asked for implants to be removed because they felt they were making them sick, get them taken out and then want to start again with the reconstruction process a week later because they do not like how they look. I reassured him that I was really clear after 8 years.

"I had a friend who was diagnosed at 24 years old with an extremely aggressive and fast moving form of breast cancer. She describes sitting in the doctor’s office weeping after they told her she was going to have to have a double mastectomy. She was weeping, freaked out and was sobbing to her mom, because she was wondering if she was going to die. The nurse squatted down next to her and said, “Don’t worry, honey. We will give you new ones that are bigger and perkier than before,” as if the reason she was weeping was the fear of losing her breasts. She was afraid of death and treatment. She was afraid all of it. She was afraid of cancer and what that was going to do to her life, and those were the words of comfort from the nurse. Fuck you."

Well, I think I comforted myself for the last 8 years. I was told that line too. “Oh, I don’t need to wear a bra. Lucky me. My boobs are so perky and will be when I am 90, if I am still alive after having this toxic shit in my body.” I personally shut down around it for all those years, because there was a long list of last cuts that I needed to make before I was ready to even see that one. At the time, I was going through my double mastectomy, I don’t think I had the ability to ask myself to be honest enough to make the right decisions or stand up for what I knew to be right for me.

"If there is a pre-determined order of what most people do, often it is easier to jump on the assembly line and do what you are supposed to do. This is how it goes. Ok, fine. That is the problem. We need to hold the phone and explain the different options to people and what those options mean."

Yes, it is also important to allow women to take the time [when possible] to check in and feel in their body, in their gut, what is the right thing for them to do as an individual versus being told what is best for them, and to empower them to stand up for that choice. There are so many times when we know what is right, but aren’t able to act because we don’t have the support or it goes against other places in our lives where it would completely rock the boat. It can be ugly.

Lisa: Yes, it can also be cost prohibitive or incredibly scary. You were terrified the first time you were going to see your surgeon about this. You were afraid that he might just say “no” [regarding the explant surgery], as if he has the power to say “no.” He was so skilled and he was the person who had made everything look so great. You were some of his best work.

Yes, I had that fear that he may just say “no,” and then wondered if I would have to start over and find someone else who would actually do this. I was lucky enough too that I was able to afford the remainder after insurance paid for some of the surgery. Insurance didn’t pay for all it. The link between implants and illness isn’t clearly proven, even though so many women are having symptoms. It was not an insignificant amount of money that I had to pay at the end of the day.

"Imagine if you couldn’t afford that?"

Right, I read on many chat rooms and other places I was reading [about implants the week I was considering my explant], many women, who are sick, do not have the luxury to go and do this surgery. What it comes back to is owing every woman, every human being, the right to know what they are getting into in the beginning of this process.

"Yes, not to mention the time to heal…what if you didn’t have a job that allowed you the time to heal?"

Yes. So, tell me about a significant last cut you have made?

"Well, when I chose to leave being on the road with this person [about whom she was making a documentary], that was definitely a monumental decision, but I don’t know the ramifications of yet. I am still in the post, sorting it out phase. Sometimes I think, “Oh, this is great. You are just letting the Universe take you or you are following what you are meant to follow and being more truthful.” Sometimes, I think, “Oh shit. Did I make the right choice?” I am still in the back and forth crisis. It is not even regretting that I made the right choice, but feeling the regret and sadness that it didn’t work. The thinking of “Well, that would have been so amazing!” still comes across pretty frequently."

Would you have been in integrity with yourself if you had stayed?

"No."

That’s what it comes down to in the end. I think that is what it comes down to in the end with any of these big decisions. First and foremost, if we are living a truthful life, we want to be able to look ourselves in the mirror. I don’t think that any of these decisions come without sadness and loss, because even in a break-up, a divorce, a surgery, an internal shift-all of it, there always are pros and cons. That is exactly the crux of it.  Even knowing that you might be letting go of something that could have been, in its ideal form, optimal and fantastic, [you then look at] where did the scales tip? That is exactly what I am trying to highlight here with this project. It isn’t easy. A lot of people would have stayed out on the road, because that is what they said in public they were going to do. Then, the soul gets sold off a bit, and the integrity of who you are gets compromised. So yes it remains to be seen, but it is a breakup. Breakups are sad even when they are healthy.

"Yes. That is what it has felt like emotionally. The only emotional kin to this whole experience with this film is a break-up or a death. I realized, “Now I have to call everybody and announce that this has changed” or return to things socially when people then ask why I am not out on the road and how my film is coming along."

Yes, we get forced to own our truth and say it over and over again. You are constantly put to the test to stand behind the decision you made and your values and beliefs.

"At first, I was asking, “If I were a different person, could I have made this work? If I were smarter or better, could I have made this work?” I kept thinking, “If only I had pushed a bit harder…” One thing though that is nice is that, with time, it has become much clearer that no one would have been able to make that work. There were so many things that came to light in reflecting on the principle relationship at the heart of the film and what I had learned in the months leading up to filming. I feel more and more certain that no one could have made this work. This is not my bad. I did not fail this. This was an impossible situation, and thank goodness I figured it out. It took some months, but thank goodness I figured it out and got away from it. Now I can begin the healing and the next thing."

Yes, now you can put your talent towards something where you can make change in the world in a healthy way for yourself. I have run myself into the ground before, literally having a nervous breakdown, trying harder and pushing harder. I think most have in some way. To what end if you tried harder at the cost of your well-being? What if you had made that film, but you got sick because you had completely stuffed down what you felt to be true to you? In my experience it has always been this way.

"My sister Elizabeth lives in that room over there. She has cerebral palsy and needs constant care. So that is the coming and going you are seeing. That is a whole other thing I considered talking about. My sister got very sick this past Spring while I was in the middle of pre-production. It is a developmental disorder that you are born with, and it further develops over time. With her, she is profoundly disabled. Since I was in high school, I always knew that her life expectancy was around 25 years old. I always knew that she was going to die when I was in college. So there was always this intense relationship around her early demise. She just turned 35. This Spring I was coming to Southern California to do a shoot for an entirely different film, and my mother had called the week before to say, “You might want to change your plane ticket and come early because Liz isn’t doing so well.” So I called my brother and he said, “No, you need to come immediately. Liz is going to die.” So I got out here and, as I was driving up from LAX, my mom called and said, “We just talked to the pulmonologist (who has been with her since she was a little kid) and he said that she has pneumonia and everyone needs to say their goodbyes.” That is how people go. We spent a month in the hospital. It was terrible. Then we took her home for hospice because they said she had days or weeks. So I just decided to stick around. As soon as we brought her home, she opened her eyes and smiled. We had not seen her make a facial expression in weeks. It is so nuts. I call her The Nine Lives. She is like a cat. She has had these brushes with death before. My relationship to it is so fucking confounding. How do I deal with this? That [whole experience] was out of my control, but it was a hugely impactful experience in recent time. I came home for this and then she didn’t die. I had to re-orient and head out to make the movie."  

Has this all brought you together as a family?

"Yes, we are a very bonded pack of people."

How did you end up in New Orleans?

"I was living in New York, but I hated winter. Growing up here made it hard. Fall is great, but then the novelty runs off. In fact, I thought perhaps this is my last cut. I lived in New York for a while and was trying to make documentaries, but was working in TV. I kept getting promoted, which was great, but I hated the stuff we were producing. I would think to myself, “This is garbage. I am good at this, but I don’t like it. I am getting promoted and New York is one of the most expensive places in the world. This is a career. It’s great. I should do it.” But then I went through one really bad winter. You know how normally you defrost and come alive in Spring? I did not defrost until the end of August, when it started to turn into Fall again. I thought, “This is unacceptable. I can’t do this. It is too hard for me. I don’t like this town. I don’t like this work.” What I kept hoping in New York was to master it somehow. I kept hoping to balance it so then I could leave."

Yes, it’s the same thing as “If I try harder” or “If I hold out long enough…”

"I tried that for a few years and it did not work. So then on the first snowy day, we packed up a U-Haul and just drove to New Orleans. We went there, because we have friends, a cousin who lives there and there is a production world there. If I want to keep doing production work, it’s NY, LA, Austin or New Orleans. I like New Orleans a lot. It has been a year and a half. We are still getting to know each other."

I think essentially what you are saying through the way you analyzed the question [What was your most recent last cut?] is that we are doing this all the time. So this was significant. Other choices are significant. Even smaller choices in your day are significant. They are happening all the time. If you are living a life where you are trying to be awake.

What were the challenging parts of the decision related to the documentary?

"I actually think part of the NY story is connected, because I always knew I wanted to work with documentaries. It was something that I really liked but I couldn’t sustain it in NY. It was too expensive. So I needed to work in television to actually afford life. So leaving NY was about the decision to leave but it was about, “Go on, girl. Go make your feature film. Get out of NY and give yourself a few years to see what falls into your lap.” Then I met Sasha, the producer, and she is the person who found the woman that we were going to make the documentary about. So I pinned all the hopes, dreams and expectations to this project, and it was working. It was all coming together. I thought, “I made the right choice to leave NY. Now I am getting my time. It is going to pay off. I am going to reap the benefit of giving myself this new freedom and space.” I had mapped out the next two years.  “Ok, here is how the edits are going to work. I am going to submit to these festivals. Then, I am going to do this and this.” I had mapped out the next couple of years and pinned all of my dreams and ambitions. It is exhausting. It’s this space where, “Oh my God, I don’t want to be a filmmaker.” I don’t want to, but I want to. I sometimes will think, “Ok, fine. I quit,” but then immediately say, “Never, I love it!” It is a difficult life. It is a difficult pursuit. It is so inconsistent. It is so crazy. It is so volatile. I had pinned all of these ego ambitions, life ambitions, [onto the belief that] this was going to be the next thing that I did that took me to the next spot so I could really [believe that walking away from everything in NY was worth it]. 

So to have it all fall apart so dramatically and tremendously, the ego conversation was the worst. I was pinning my ambitions to this. I did think this was going to be something that helped me figure out my career and really make that turn official in my professional life. I worked on so many things as a producer and I don’t particularly want to be a producer. I would much rather be the person directing something. I am better at that, but those jobs are harder [to find]. So this was great because I was going to direct something. I am going to step away from this world where I have to be the producer for everyone, which is essentially like being a glorified babysitter because you are just wrangling and taking care of everyone. I don’t want to do that. I am good at that and I’ll happily do that for a nice payday, but it’s not what I want. I had pinned all of those hopes on the [recent documentary] project. It was going to be the thing that took me to my next spot, and I was so excited about it too. I spent all this time studying Renaissance religious art so we could mimic that with the imagery with her as a martyr. There was so much thought and attention put into it for months and months and months and to lose all of that was a bummer. It was really depressing and sad for me. It felt like a death. I really lost something or someone. 

The hard part was contending with the ego stuff. Well, am I bad to have had an ego about this? Am I bad to have said, “This is going to make my career go somewhere” and then to feel uncomfortable with that space where, “You thought this was going to make you an important person. You thought that was what was going to do for you and know you are sad?” When you have to actually be with your ego, it is very uncomfortable. I am kind of feeling, not guilty, but embarrassed that I really thought that was going to happen. Yet, that’s ok.  The hardest part was the whole conversation with myself that I thought this was going to be a career breaker. I don’t anymore. This new project is fascinating- the subject and the questions, but the last one was a home run. It could have been a grand slam, because it is incredible. Yet it is incredible because it is not real. I am still contending a little bit with the disappointment. “You are going to have to keep working hard. You are going to have to keep doing this. Sorry, you are not out of the struggle space.” I also know that I never will be. Even if I had made that film and it had been a grand success, it will keep being a struggle. 

This last week I was in Seattle and Portland to meet a bunch of women and try and figure out whose story to tell. The pretense was that I am so interested in all of these issues around identity and body politics and all of that but there is the bigger picture of breast cancer, which is such a broad thing. There are so many different stories within it and so many different ways of representing it. We have failed at that. There is not good, diverse representation of what breast cancer looks like, feels like, what the experience is at all. So who are the other communities that are not being shown? The Mets community, which is the Stage 4 metastatic community, is a whole world of people. So I was meeting with some of those women and they are really amazing and interesting. Maybe it should be about the Mets community? It could be about all these different groups. So, I am just trying to get a grip on all the worlds of people [under the bigger umbrella of breast cancer], and also say, “What is interesting to me? What I am going to learn by doing this?” It is important to work through you own emotional stuff through your art. What do I want to work through? Whose story can I resonate with and really dig into?"

Well, the Mets topic is very interesting with what you have experienced with your sister in terms of the parallels there.

"Yes, knowing there is an expiration date."

Yes and how you choose to live it.  That parallel is huge. How do you choose to live that time that you have and what do you want to teach people? The right topic will pop.

"Yes, I will keep reading and researching. It will come." 

What is most true to you?

"I don’t know. I was fussing over that one. In case you can’t tell, I am a little bit neurotic. This was when I was trying to get my mother to answer for me. She said, “Being a good person.” Come on."

What do you believe in that keeps you focused when you are making these decisions? When you are making these decisions, what are your reference points within yourself?"

"We spoke a little bit about my sister. I am not a religious person at all. No religion. But when I am making life choices or trying to figure out how to live well or be good or take care of myself, often my sister is a reference point. Since we were little kids, her limitations have always been a reference. I used to get really sad that she couldn’t do things I could do, but my mom’s advice was always, “Go do it harder and better. Go have extra fun and tell her about it.” It made me realize, “Oh yeah, that’s true. So go dance so hard at a party that you pull a muscle in your leg because you are crazy. Go have extra of whatever it is.” I think about her a lot when I am trying to make a big choice. She is a reference point. So, as a result, I can be a little more impulsive or risky. Maybe risky is a better word. I will make bolder decisions, because there is a reference point of someone who doesn’t have the option to just go out and do whatever the hell she wants, and I can so I should. I think about that a lot.

With her too, [she affects] the way that I think about interacting with people and wanting to know people in the world and, if there is a moral code that I live by, it is about respecting people and trying to understand who they are and honor who they are and give them lots of respect no matter who they are. Everyone deserves that patience and kindness. Growing up here in Montecito, where many people have a lot and often think they are really important, was tough. Everyone knew me as the girl in the wheelchair’s sister. A lot of pity was heaped on us. So, I have never liked that about Montecito or Santa Barbara, but I feel as if it was a really great incubator for this idea that you can meet people where they are and you can respect anybody. That was fun. I like being plopped down into situations where I clearly don’t fit in. How do I get to know someone? How can I make friends with this insane guy at the bus stop just for 10 minutes and see him for who he is and let him know that I see him? If you can cut through the bullshit and connect with people, it feels like a profound victory."

My daughter is 9. So one of the things I am constantly doing is reflecting on what I wish I had known when I was that age. What do you wish you would have know at that age or what do you wish someone would have told you?

"This is a tangent, but I promise it will lead me to answer. Since sixth grade we had to start keeping journals. I was obsessed with that and loved it. I kept a very active diary for many, many years. I have fallen off in the last couple years, but I always had this idea of having a conversation between younger me and older me. So I would be writing in a diary, “Older me is going to someday learn this…” Looking back at it and reading some of this stuff, like my really sad 17-year old self when I was going through a phase over some boy or whatever it was, I wish I was just there to give her a big hug and tell her it is going to be fine. I love the time travel thing with the diary.

When I am trying to make a big choice in my life or figure out how to be, I will say, “What would 17-year old me think of this? Would she think it is cool? Would she think it is boring?” That was the most idealistic me. I very much became who I am around 17, but was also super dreamy and completely naïve. So, what would 17-year old me think of my life right now? Would she think I am a sell-out? Yeah? Then, we have to leave NY right now.

The world was so much smaller when I was 9. My frame of reference was so much smaller so I think there was more judgment or negativity that I heaped on myself. I wish I had had a broader reference point to take away or negate the self-criticism. I was definitely, always have been, hard on myself, even as a little kid. I wish I had been told to lighten up a little bit. Don’t worry. This too shall pass. I wish I had been given a better sense of humor at a younger age too to handle the insane stuff that life brings. That [sense of humor] develops much later but if I had had that knowledge that it is all absurd anyway and you might as well try to enjoy yourself, it saves a lot of heartache and feeling insecure. I wish I had had the consciousness of a 30-year old as a 9-year old and had been told, “Now have fun!” That is what adults always told us, “Enjoy these years.” Youth is wasted on the young."