Dear theater, Grey’s Anatomy, and everything Emmy nominated Chandra Wilson fans! ABILITY is happy to share our interview with Wilson. Born and raised in Houston, Texas, she is an upbeat, positive, light of a human. Drawn to the stage from a very early age, seems like theater was her first love and something she found joy in. Since her daughter’s diagnosis, she has taken on the role of caregiver becoming quite familiar with Cyclical Vomiting Syndrome (CVS) and its mitochondrial associations. They’ve had a long journey of symptoms and multiple binders full of information, results, and a cocktail of treatments. ABILITY’s Lia Martirosyan had the pleasure of speaking with Wilson amidst her not uncommonly busy schedule of advocacy, acting, directing and much more.
Lia Martirosyan: Is that Christmas behind you?
Chandra Wilson: Oh, yes. We have to get Christmas started nice and early. November 1st the town goes up.
Martirosyan: There’s lots of movement.
Wilson: Yes, yeah. There are fancy Disney trees, got to have that, Disney princesses. Mickey’s on the sleigh at the top.
(laughter)
There’s a snowman over there.
Martirosyan: Santa Claus flying around.
Wilson: Mickey Santa.
Martirosyan: It looks like it’s actually floating around.
Wilson: Just flying, right? Yeah, yeah! (laughs)
Martirosyan: Could also be the drugs.
Wilson: Well, there’s that.
(laughter)
Martirosyan: Have you gotten around to reading “Grey’s Anatomy”?
Wilson: I have a big gigantic copy of it that I got in season one, and I can admit to having flipped through all the pages (laughs) and looked at all of the artwork, the graphics. The reading of it, not so much.
Martirosyan: I wanted to bring that up because I think most people don’t know—
Wilson: —that there is a “Grey’s Anatomy.” Yes, I have the hardback binder edition, that looks real nice on the bookshelf.
Martirosyan: Quite a large book. I read that, Dr. Grey, became the standard for illustrations of anatomy. However, in the show Grey’s Anatomy my mom and my favorite character is Chandra.
Wilson: Aw, look at that!
(laughter)
Look at where we’re starting, good, good!
Martirosyan: You’re amazing on-screen. We love it.
Wilson: Aw, thank you very much. I’m crazy about her. I love her. (laughs)
Martirosyan: If you don’t mind, I’m curious about the connection between the cyclical vomiting and mitochondria.
Wilson: Sure, yeah. My daughter is diagnosed classic cyclic vomiting syndrome. The contributing factor with her is mitochondrial disease, to the extent that because mitochondrial disease has to do with a disorder in the mitochondria, where at the cellular level, her motor is operating not at 100%. Her median would be, like, 65%, 75%. So if at the cellular level she’s not getting the energy that she needs in order for cells to do what they need to do, then in cyclic vomiting, the sympathetic system shuts down, there’s no energy supply there in order to do what needs to be done as far as the gut is concerned and any neurological connection that needs to send that brain signal to the gut to say, “Stop doing what you’re doing.” Her energy is already depleted at the cellular level, and this is a level that she doesn’t even feel because her normal may only be at 70%, so she wouldn’t even feel that she was deficient. That contributes to the tendency to kick off into a cyclic vomiting episode. So making that discovery says that, “OK, so then you have to fortify that mitochondria with co-enzyme Q10 or L-carnitine, B2, those things because her L-carnitine just runs through her body. We were able to find that out through testing.
It’s really important to fortify those things, so that when that brain-gut connection doesn’t want to speak the way it needs to speak, she at least is fortified with the energy to be able to bypass that signal.
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Martirosyan: Did you discover this through genetic testing?
Wilson: Through genetic testing, that was making that mitochondrial connection. And also the fact that once she did receive a definite CVS diagnosis and she was initially placed on amitriptyline. The mitochondrial cocktail was brought in right away, the L-carnitine, the CO-Q, the B2, and those things contributed to keeping her out of an episode. So if the cocktail was working, that was another signal that this was probably what we were dealing with. You could also see the energy depletion. Sometimes it would come before an episode, but certainly during an episode, in a way that she wouldn’t necessarily notice that it was happening because that was her baseline, where someone else would look at her and say, “She seems a little under on the energy.”
Martirosyan: Is there a known trigger?
Wilson: In all these years we haven’t been able to figure out a definitive trigger. When she started, she was 16, and it seemed like any time she would go into an episode, especially one that led to hospitalization, within a couple of days of being in the hospital, her menstrual cycle would drop. We made the connection that going into that premenstrual time is an energy depleter, of course. That may have been when her sympathetic system started to shut down. And when we introduced things like Depo-Provera to take away the menstrual cycle so that the signal wasn’t ticking out, that was a time when she went two years without a cyclic vomiting episode. Even though she was still getting her menses, that signal wasn’t there.
Wilson: But age, maturity, life circumstance change, all those things would come in, and that’s not necessarily the signal any more. We haven’t been able to pinpoint—we can’t say, “We’re going on this trip, you’re going to have an episode.” Or “The holidays are coming, you’re going to have an episode.” We haven’t been able to make that distinction since she’s been an adult.
Martirosyan: When there is an episode, are you now able to stop or prevent it from getting worse?
Wilson: Yeah. We have a good abortive protocol now, especially now that she’s an adult, and because we are 13 years into her having CVS cycles, so there’s a trust between her doctors and her and me to be able to use the medications that we need at home in order to abort episodes or at the very least, stop her from having to constantly go into the ER. As an adolescent or young adult, that trust wasn’t there, so we always just had to go straight to the ER, which would usually end up in a hospital stay of five to seven days. That was happening month after month. It was debilitating to quality of life. She was a college student during that time, so since 2019 we’ve been on the abortive protocol that we’re on now, so that we can hit an episode the minute (snaps fingers) she can feel that something is going off, as opposed to having to go to the emergency room, wait three hours, go through triage, get assigned a room, wait for the doctor to come in, hours and hours go by at that point before she would even get hydrated or get the first line of medication.
Martirosyan: I’m glad you figured all that out.
Wilson: And the good and the bad of it is, so you figure all of that out for abortive, for help to curb symptoms, but we still haven’t gotten to the trigger yet, to how about let’s not have these at all? That’s what we’re still working on. That’s why I’m excited about the book that’s coming out, “Cyclic Vomiting Syndrome and Cannabinoid Hyperemesis.” It isn’t necessarily to make the correlation between cannabinoid use and CVS, but showing the similarities between the type of nausea and vomiting that occurs with CVS that sometimes gets mistaken as cannabinoid use, especially with adults going into hospital situations, as something else to make medical professionals turn away and say, “That’s just marijuana,” or whatever. To be able to make those distinctions and teach medical professionals what those distinctions are and thereby be able to come up with effective forms of treatment.
Martirosyan: Is the disease considered rare?
Wilson: Not any more. I think we just went past the rare phase of it. I think the only reason that it had the rare title to begin with was because of doctors not exactly knowing how to report it and less rare in pediatrics because at least you are compelled with your pediatrician, and the pediatrician is trying to work with the family. Whereas adults, most of that care is coming from the emergency room, with your primary care physician not quite knowing what to do. So there were fewer titles associated with adult care versus pediatric care. Now all of that’s changed, even in the last 13 years since my daughter was first diagnosed. It’s global, not here in the U.S. Fortunately, there CVS associations internationally, in Canada, Europe, Germany, I believe, all talking with each other to say, “Wow, OK, I didn’t think there was any place else that this was happening.” All of the episodes for the most part, regardless of what people’s triggers are, the presentation is so similar, the language is similar, the behavior is similar. And people are using words that they don’t even realize they’re using, like “conscious coma” and “level of lethargy” and “overwhelming, all-encompassing amounts of nausea.” Everyone’s using the same language, without realizing they’re talking about the same thing.
Martirosyan: Incredible. Any stats on gender or race?
Wilson: What I know off the top of my head, though, is—you know what? I don’t want to say it wrong. It’s in the new book “Cyclic Vomiting Syndrome and Cannabinoid Hyperemesis.”
Martirosyan: What I was thinking about was, is there a trend that appeared with what’s been reported to date?
Wilson: Between the genders?
Martirosyan: Gender and race.
Wilson: I know it was in the chart. This looks like a college textbook the way I’ve highlighted the whole thing. “That’s an important point! And that’s an important point!” (laughs) I’m trying to distinguish between all of my highlights. But the bottom line is that it ended up that it really didn’t matter because it’s all coming out even in the wash and there’s no—in younger patients, pre-adolescent, it was more boys than girls, but adolescent it ends up being more girls than boys because of the introduction of the menstrual cycle. And then as adults, I think it was more [men] than [women] again, but men, it’s adult-onset cyclic vomiting, whereas [women] may have had cyclic vomiting as adolescents. Those are kind of recurrent cases.
But then, CVS also transitions to where as an adolescent, you may be experiencing the vomiting but than as an adult it transitions to migraines. So there’s also a whole section in here about that correlation. it’s basically the same kind of signal but the manifestation is different.
Martirosyan: Can we talk about what that cocktail is?
Wilson: Sure. In the mitochondrial community, the well-known “mito cocktail,” they call it, is L-carnitine, co-enzyme Q10, and B2 or riboflavin. Those things specifically have to do with energy at the cellular level. It’s kind of like—the way my mitochondrial specialist explained to us early on it, you’ve got to keep the train chuggin’ down the track and fuel it as it’s goin’ down the track, otherwise is stalls on you. It’s keeping the fuel at the cellular level so that the cells can keep doing what they’re doing. A lot of that doesn’t translate to energy that an individual can feel. We don’t know if our cells are depleted of energy, we only know that we feel tired. Mitochondrial depletion doesn’t necessarily feel like tired. It’s just that your body at the cellular level isn’t functioning at its full capacity. That affects muscle, organs. Organs aren’t doing what they need to do at 100%. The biggest organs that we have are the brain and the gut. Those are the things that need all of that energy at the cellular level so that they can function at their highest capacity. That’s what the cocktail is supposed to do, in order to pump those things into the cellular level so that cells can do what they need to do. Make sense?
Martirosyan: Yeah, I love that explanation. Do you have to be over 21 for the cocktail?
Wilson: No. Hahaha! (laughs)
Martirosyan: Is it all in pill form?
Wilson: Pill form—well, no, there are liquid forms of L-carnitine. CoQ 10, I’ve seen liquid versions of that, too. But it all comes down to the level that you need. Every individual is different. One person may need a certain amount of milligrams, another person might need another. It also comes down to—because my daughter as an adolescent, I could give her the liquid version, which was great because I could get more bang for the buck. But she just hated the taste of it and would rather take pills, and if you do that, it’s more pills, and a big, big horse pill. That’s the trade-off. Do you want to take big gigantic horse pills or take the liquid? The L-carnitine forms now come in flavors, like lemon, cherry, something like that. It’s all about what you can handle and what your taste is. But for most kids in particular—because that’s as far as I’ve gotten with my knowledge—the kid level as opposed to the adult level, it takes high levels of L-carnitine in order to make up for it. And your CoQ, one physician explained it to me this way: “If you take CoQ 10 and you feel a burst of energy, then that means you needed the CoQ 10. If you don’t, you’re cool, maybe you don’t need that much.” That’s been very true in my daughter’s case.”
Martirosyan: Have you tried it and gotten a burst of energy?
Wilson: I have just in order to keep heart health good. We have heart disease in my family, I don’t know that I necessarily feel a burst of energy, but I also know that I don’t have the deficiency. If you have the deficiency, then you definitely benefit from higher doses of L-carnitine and CoQ.
Martirosyan: I guess this is anecdotal, but any problems with insurance picking up the cost?
Wilson: On the Cyclic Vomiting Association website, there are certain pharmacies around the country that treat it as a prescription. Otherwise, it’s over the counter. Because we have an insurance code now, and that’s something that’s come about in the last five or six years for cyclic vomiting syndrome, you basically have to check with your insurance company and see if you’re able to use the cyclic vomiting syndrome code and thereby have your L-carnitine and CoQ prescribed. But you can get them over the counter, and most people prefer health food store versions as opposed to your regular drugstore version, in order to make sure that you’re getting the most potent—is that a good word?—version of L-carnitine and CoQ.
Martirosyan: So everything that you’ve been told by your physicians is over the counter, you don’t need a prescription?
Wilson: For the mitochondrial deficiency, yes. Or at least in my daughter’s case there is no pharmaceutical that she’s been asked to use on the mitochondrial end.
Martirosyan: I’m just getting to know a bit more about the mitochondria, how it operates and is passed down from—
Wilson: There is a maternal link, yes.
Martirosyan: Is there a genetic mutation as well, now that you know what gene it is?
Wilson: Right. My daughter and I both went through genetic testing together. She has two gene mutations that her mito specialist has pointed to and said that those are the two that are giving her the problem. I have the exact same gene mutations but am without incident, it’s a strong word, (laughs) but it’s not affecting my body the way it’s affecting my daughter’s. One of the things that we discussed is how we have so many genes, and many of them sit dormant, many of them are sister genes to something else that’s functioning and the whole purpose is when something that’s functioning that’s going bad, there’s a sister that could potentially come in and pick up the slack. It’s about being able to wake up the sister and say, “Hey, come on over here and start working!” (laughs) I know that’s what a lot of the research is about right now, trying to tap into those sisters to get them to come over.
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Martirosyan: Mitochondria is so fascinating.
Wilson: It’s incredibly fascinating.
Martirosyan: There’s so much to it. What you learn doesn’t seem enough.
Wilson: (laughs) And then the learning of it and then turning that into something practical. Something that’s actually helpful. It’s like, “OK, we got it. Now let’s make these connections and let’s figure it out.”
Martirosyan: Are there any conferences or events? Since it’s more well-known now, is it being pushed out?
Wilson: We just had a conference sponsored by the Cyclic Vomiting Syndrome Association. I spoke for the opening of it, but it was basically the breakdown of everything that’s in this book. It went through what CVS is in particular, how it presents itself, who’s affected by it, what triggers are, that’s where the mitochondrial component came in. That was the first half of the first day, and then it got spread out into sections talking about neurological connections, about that lovely brain-gut connection, about pharmaceuticals and food and all of the other environmental things that could come in that may or may not have some kind of effect. It was incredibly thorough for the specific purpose of alerting healthcare professionals, especially emergency room workers, nursing staff, as well as family members to be able to get information out to physicians to say, “Hey, take a look over here. This sounds like my kid, my husband.” For all the caregivers out there. It was incredibly informative. I think that we have put excerpts online.
Martirosyan: You say “we,” is that the doctors that you’re associated with?
Wilson: Cyclic Vomiting Syndrome Association, CVSAonline.org. It would show up here so people would be able to have it as a resource.
Martirosyan: Is there a specific doctor you think is the most knowledgeable in mitochondrial research?
Wilson: It seems like people are really working in tandem with one another right now in being able to share information. Dr. Richard Boles here in California basically spends all of his time breaking down genetic work and finding those connections and trying to be very specific with each patient to say, “OK, there’s a deficiency here, let’s work on that one.” That’s been the cornerstone of his research for at least the past 20 years.
Martirosyan: Fantastic. Is there a decision about the direction of “Grey’s”?
Wilson: Wow! It’s hard to say that our show reinvents itself because we just kind of go with the wave all the time! (laughs) The best way to put it is, we never lose what our show has always been about. It takes place in that hospital, no matter what name it is that we call the hospital in a given season. And it’s about being a surgeon and going through that residency and having goals, personal goals and seeing if you can achieve those goals and watching life come in and make a mess of all of those plans. That never changes. Whether you’re dealing with folks who have been on the show all 19 seasons or people who just got here five minutes ago, everyone’s goal is the same, even though the execution of it is individualized. That’s what keeps our show familiar and exciting. That’s what we’re going through right now.
Martirosyan: Every episode has you thinking, “Oh, now what’s going to happen? How is this going to work?”
Wilson: “Where is that going?” Just the fact that you ask that question, that means, “OK, so they’ll be back next time.”
Martirosyan: The people are hooked! What happens when you go into a hospital? Do staff and doctors immediately recognize you and get a kick out of it?
Wilson: Not immediately that I can see, although it may be a different story. Any time I go it, it’s as my daughter’s mom. I used to just carry the big binder with me with all of her information, (laughs) and I was the one who asked the questions, I’d look it up and show you that this is what so-and-so said. Later on, once we’ve gotten past crisis, we can talk about recognition. I’m always an advocate first when I step into that role.
Martirosyan: The handy binder!
Wilson: There’s that similar language. You wouldn’t think you had that in common, and then you find out that no, everybody’s got a binder!
(laughter)
Martirosyan: Absolutely.
Wilson: I hear it when I talk to parents, mostly. The kids, they don’t have it, but all of the advocates do, the long line of advocates that we speak to. Or if you go on the message boards just to hear other people’s stories, that’s when you’ll hear from the advocates, “I have all the records from this test and I can tell you when this happened.” You’ve got to keep it. That’s the only way that you can walk in and be of assistance with carrying the information. The medical professionals will look at your charts, but they won’t necessarily have all the back story. That’s the importance of the advocate with any sufferer, somebody to walk around with the back story. Because when you’re in crisis, the hardest thing for you to do is to be able to communicate effectively. And without that person standing next to you, it’s impossible to be able to have that effective communication with physicians.
Martirosyan: Many people don’t understand that, especially if you’re by yourself, if you don’t have an advocate with you, a friend, a parent, a loved one.
Wilson: And when you’re in crisis, you’ll present a whole lot different than you would in a regular day. My daughter has gone back to emergency rooms when she wasn’t in crisis, maybe she left something in the lost and found or something, and they don’t even recognize her. (laughs) She’s a completely different creature when not in crisis.
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Martirosyan: You’re right. That’s a good point. Are you close to UCLA? Where do you typically go?
Wilson: We went to our local hospital initially. It was Provident St. Joseph in Burbank, and we were referred to Children’s Hospital LA when she was 16. We were able to keep that relationship and get a medical team together there and she was able to go there until she was 22. And then they said, “OK, you have to make that dreaded transition into adult care.” It was definitely a dreaded transition, no matter how much you prepared for it. I had already spoken to doctors, all the records were passed over, you had an ER relationship—it doesn’t matter. It was still kind of like starting over from scratch. We realized that when she would go to the hospital, the hospital was just treating her symptoms and nobody started to research again. After realizing that, after quite a few visits, we decided to go back to the drawing board and went into the UCLA Health system and said, “Let’s just start this thing all over. Act like you don’t know anything. Act like I don’t have a binder. Let’s just start over.”
As a result of doing that, they basically co-signed on everything that she had going on as an adolescent, “Yup, this is what it is. This must be it.” And as an adult, we were able to try a couple of other different anti-nausea meds and things we weren’t able to use as an adolescent. But it was mostly about that abortive care so that she wouldn’t have to continually get to the emergency room. If we could abort at home, if we had the right medication at home, without being a doctor or even a nurse, just whatever that right combination was going to be for her body in order to cut off that signal that would send her into an episode, that would at least help that part.
Like I say, it’s been 13 years. At some point we’re going to lose some doctors, they’ll switch hospitals, retire, whatever, I’ll have to start with somebody else, and that person may be like, “Nah.” We realize that we will continually have to start over as necessary and respect that that’s what the process is, as opposed to walking in mad that we’re having to do it. (laughs)
Martirosyan: What does your daughter do now?
Wilson: She wants to be a writer. She graduated from Cal State Northridge with her screenwriting degree. It took her a little longer to get through college than she would have liked, only because she sometimes would get to the end of semesters, go into some cycles, miss finals, miss turning in some things and have to take those classes over again. As a result of doing that, it got stressed out, but there’s her degree right there on the wall. (laughs) She has her bachelor of arts, which is amazing because sometimes you start to think you’ll not achieve certain things. It’s very important to me to always show her her achievements anyway. “This is what you did anyway.” I don’t know if it means as much to her as it does to me, (laughs) but it means a lot to me. I say, “Look, even with all of this, look at what you did!” And one day she’ll be able to appreciate that.
Martirosyan: Does she know anybody in the industry, maybe an actor on a long-running show who could try to—
(laughter)
Wilson: Listen to you! She’s a novelist. That’s the journey that she’s taking right now. That’s the kind of writing that she enjoys. It’s about taking that leap when you’re trying to get your first book published and deciding that, “This is the one that’s ready. I’ll take the leap with that one.”
Martirosyan: And then try screenwriting after she gets something published?
Wilson: Maybe, she’ll see. You don’t have to decide everything any more, apparently. (laughs) You can just figure it out on the way!
Martirosyan: How did you know you wanted to get into acting?
Wilson: My mom started me in dance class and acting classes when I was four years old. I did my first play, a musical, “The King and I,” when I was five. And the thing that I really enjoyed about doing that play is, I was playing the youngest of the king’s kids, if you know the musical, and at one point all the kids come out in order to be introduced, and I was the littlest one to come out at the very, very end. I came out to bow to the king, and I bowed the wrong way, and he had to come over, and they had rigged a little loop on the back of my pants so he could reach his finger into my little loop, twirl me around, and put me down the right away. The audience just busted out laughing every time. I was like, “Hmm, this is cute!” (laughs) “I can make people laugh! It’s entertaining!”
So I always looked at plays as a place where audiences could come and sit down and be invited into this world for two hour or so, and you’re not thinking about your bills or the drive home or how your day went, you’re just immersed in this world. There was something about that that I really liked. I just felt like I was taking people away from their stuff. I still feel like that to this day, even, with “Grey’s,” because people say, “When ‘Gray’s’ is one, don’t talk to me, don’t call. Leave me alone. I’m watching my show.” It’s very similar to me as audience response from the first play I did at five. (laughs) That’s my full circle moment of being an actor.
Martirosyan: How many times do you say goodbye to people by turning away and bowing?
Wilson: That’s very, very funny. I kept that part of the circle away. (laughs) But doing something different, yeah, I’m still there. Going against the grain, yeah, that’s still me.
Martirosyan: Did you go to college?
Wilson: Yes, I did. In Houston I graduated from the High School for the Performing and Visual Arts, and I went to NYU, the Tisch School of the Arts. I trained at the Lee Strasberg Theater Institute. I was there for four years. And then when I graduated I was doing a play off-Broadway that I started my senior year, otherwise I would have probably wanted to go to grad school just so I didn’t have to start paying back my student loans, but I was in a play. (laughs) I did that instead, and six months later my student loan bill came and I couldn’t understand. I said I hadn’t called them and told them I had a job and it was time for me to start paying that loan back, and they started telling me something about some things I signed. And I was like, “Really? Really?” (laughs)
So there I started my 11-year journey of paying my $197.94 a month, and in 2003 I officially owned my bachelor of fine arts. (laughs)
Martirosyan: Such a weird system we’ve created!
Wilson: Yes, indeed!
Martirosyan: Congratulations on that!
Wilson: Thank you! (laughs)
Martirosyan: You came out from New York to California?
Wilson: Yeah. I was in New York the whole time, and when I came out to do the pilot for the entitled Shonda Rhimes project, a play on Broadway called “Caroline, or Change,” we were moving from the public theater to Broadway, so we took off two months to make that move, in that time I did the untitled Shonda Rhimes project. And then our Broadway run ended at the beginning of September, and we found out that—I don’t think it was called “Grey’s Anatomy” yet, but it was going to get picked up as a midseason show that October, so I needed to go to LA in October. And then “Caroline, or Change” closed in September and moved to the Ahmanson Theater in LA in October! So I was going to say, “Oh, great, so I can keep doing my show and then do whatever this untitled Shonda Rhimes project thing is.” But the schedule didn’t work. (laughs) I had to let go of the show, but I still would go backstage a couple of times a week and sit with my peeps while I was filming the show. Once we got picked up for a second season, that’s when I came out full time.
Martirosyan: Nice! You got a career!
Wilson: Yeah! (laughs)
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Martirosyan: That’s a beautiful set of events.
Wilson: An interesting set of events. I had a mentor very early on back when I was doing my first play off-Broadway who talked to me about what a career as an actor was. She told me, “You’re doing this play off-Broadway now, and at some point you’ll do a play on Broadway, and then you’ll do some staged readings and then you’ll book a national commercial, and that’s good residuals. And then you’ll do a pilot but it won’t get picked up for a TV show, and then you’ll do some regional theater. And then you’ll do a pilot that does get picked up and it’ll run for a little bit and then you’ll come back and do Broadway and then you’ll do a voiceover, and you’ll keep doing all of these things in this circle. And in that circle is where the career is.” And what she taught me was that you’re never really trying to get to a thing. “I’m just trying to get this movie.” It’s all in a circle. It all goes into your insurance eligibility. (laughs) It gives you your union card.
It set me up to never covet anything that anybody else had because there was room for everybody. Work was work. Doing a voiceover is no different than doing a film. It’s about keeping your instrument ready, this thing that we have, so that you can fall into whatever the medium is that you end up getting into because of your auditions. Because of that, people will say, “Wow, you made it, you made it!” Because of “Grey’s Anatomy,” and in my brain, the fact that I was doing my first off-Broadway play in my senior year in college and I had my union card and medical insurance, that was it for me. (laughs) Everything else after that was icing on the cake. That was it back then, in 1991.
Martirosyan: Did she also mention in that circle the other thing that’s occurring is your life?
Wilson: That’s the career circle. And life is all the stuff that’s outside of it, right? So let the circle do whatever it’s going to do inside, but then still live your life surrounding it. Because that’s the thing that will support the circle. And as long as that circle is spinning around, it doesn’t matter what you’re doing in life, meaning that the eight years I spent working in the document processing department at Deutsche Bank, I was still an actor. But I was able to pay my rent on time without having to call home and ask my mom to help. I worked my graveyard shifts and during the day I’d do my auditions or I would do shows during the day and the curtain would come down at 10:30 and I’d head down to Wall Street to work my 11-7 shift. That’s kind of what you do.
And all that’s happening at the same time—
Martirosyan: How did you get a job at Deutsche Bank in some form of data entry or accounting?How did that happen?
Wilson: Temping is what you do as an actor in the ’90s. I don’t know if that’s the case now. (laughs) But then, coming out of college in ’91, my last semester, I had to take this class called Computers. I had to learn this Windows software, this Word, this Xcel, this PowerPoint, whatever. So I came out of college with this title called an Operator, which meant that I could do more than data entry, I could create things. So as an operator, I was able to get the highest-paying of the temp jobs, and if I worked the overnight shift, that was the highest-paying of those. (laughs) So I worked overnight in document processing as an Operator. Back then, that was $27 an hour. I’m like, “What?” (laughs) “What?” Now babies know how to do what I did then. But back then, you were an Operator. So that was important to have just to be able to be independent while I was pursuing the things that I was. It never stopped me from being an actor. Everybody in there was some form of an artist. (laughs) But we weren’t starving artists.
Martirosyan: All that energy!
Wilson: My mutations had not flared. (laughs) Yes, indeed! My daughter she doesn’t even notice if she’s under, and I’ll say, “OK, you seem a little under today.” “No.” Not aware at all because that’s not where it’s happening. I think I first noticed when she was in seventh grade and she was playing soccer. All the kids were running down the field and she would walk. And I would say, “Why aren’t you running after the ball?” She was like, “I am!” (laughs) OK, OK.
I’ve worked with the Mito Action Committee for a lot of years as well because cyclic vomiting for my daughter was in the lead. I guess it depends on who you talk to what came first, right? I kept relationships with both communities. I know sometimes, I’ve got all that information in my head and in my binders, and sometimes my daughter is just tired of all of this and just wants to say, “You be the keeper of that. I’m just trying to do today.” I completely understand that.
Martirosyan: I was about 10 when we started seeing doctors. My parents were definitely my advocates. And then there comes a point in your age where you start taking over. It’s difficult. I took a couple of years off every so often. It takes a toll on you. You want to do exactly what you mentioned your daughter said, “Just forget it, I want to live today and see what happens.”
Wilson: Yes. And there’s only so much on the advocate end that you can push. You’re looking it at it from the outside in. And you say, “How about we try—?” And my daughter’s like, “No, let’s just keep everything right here where it is.” Like, “I’m fine today, and today is good enough.” As an advocate you have to learn how to say, “I understand that, got it.” And that’s the human part of the journey.
Martirosyan: As an advocate and a parent, you have to disconnect the emotional aspect of it, too. That can completely take over. I’ve seen it in my parents plenty of times.
Wilson: It’s easy to say, “What do you think you would do? If it was me, I would do this. But it’s not my issue, so I don’t know that.” Just like somebody else can look at me and say, “If I was me, I wouldn’t be doing—” You don’t know that until you’re in the person’s shoes. All I can do is give the information, and if it comes to a point where she say, “You know what? I’m kind of tired of all this. Is there something we can try?” “Oh, yes!” (laughs) “Let’s try some things!” You learn to wait.
Martirosyan: Your highlights in your text!
Wilson: “Yes, I’ve got many highlights! It’s all here! Let’s go here!” (laughs)
check this out
Martirosyan: You may not be aware of how important your support is. Even when she wants to take it easy, it’s not possible without you.
Wilson: Yeah. And being able to have conversations. I just had two conversations in the last two weeks with two new moms I met who were kind of at the start of their journey. You don’t want to look too far in the future and say, “OK, this is what your kid’s going to go through.” (laughs) But you can at least validate where they are right now. I remember what that felt like when I first heard people repeating things that I had—or being able to finish my sentences. I’m like, “Oh, my God, you know what I’m talking about?” It was so—the relief and not feeling like you’re the eight-headed object in the room, that was so important in the journey. I try to provide that wherever possible just to let people know, “No, you’re not crazy. This is happening. There are names, there are labels. You’re not by yourself. And even though your journey will be different from the next person’s, the similarities there, it all can get housed under the same umbrella.” That’s helpful.
Martirosyan: Your daughter’s doing well?
Wilson: Actually, she’s been going through a cycle this week. It started on Tuesday, and we thought it was over on Wednesday, and then it kicked back up on Wednesday, so she’s resting through this morning. It’s been since the summer, since maybe August, and again, it was just out of the blue this Tuesday morning that she woke up and she was like, “Something’s wrong, I’m coming over.” And then we go into abort mode.
Martirosyan: And she takes notes of the day before, of anything that might have been that trigger?
Wilson: Yeah, because that’s always the conversation. “Was there anything?” “No, there wasn’t.” She just immediately felt like something was off and she was starting to salivate and not knowing why. She said, “Let me just come over and let’s get it early.” And usually that’s good enough. We can get it early, cut off the trigger and she can rest and get through the day. But it didn’t want to calm down this time. This was an aggressive one. And there’s no rhyme or reason that we know of yet between when it’s something that gets cut off right away or sometimes we can cut something off right away and then it’ll show back up maybe three or four days later. It wants to go all the way. It wants to do it. It gets really upset (laughs) when we don’t just let it go! To where she’s vomiting for a day and a half. It knows how to get there and it gets mad at us when we stop it.
Martirosyan: What can you do to be really aggressive in attacking the trigger?
Wilson: Like if she was in the ER, they would immediately start her with doses of Benadryl, sometimes they would use an opioid like morphine if they would have to. If I can get an anti-nausea like Zofran in early enough or before vomiting. I have to hear what her symptoms are at that moment and that’ll let me know what the things are that I can load in order to get it to rest.
Martirosyan: When she starts vomiting, she can’t do anything orally at that point, right?
Wilson: Exactly. So we have intra muscular (IM) remedies. We have a Benadryl ketorolac IM that we’re able to do. And then if there’s a lot of writhing, a lot of behavior, we have to add Ativan. There’s a sublingual version that we’re able to use. The sublinguals are pretty good, too. She doesn’t have to swallow. We can do it like that.
Martirosyan: You definitely have gathered interesting medical experience.
Wilson: Very true. It’s all about, you watch, you note, clock the time, load, watch, clock the time so I can report all of that back to her physician and he can take a look and say, “OK, got it, got it, got it, got it, got it.”
Martirosyan: Have you done anything on the show with CVS?
Wilson: I directed an episode in season 9 where we introduced a character with cyclic vomiting syndrome. He was known as a Santa, a drunk Santa because he usually had some alcohol with him. It turns out that he’d been a cyclic vomiting sufferer since his early ’20s and didn’t know that that was it was. His life had been so debilitated by these episodes of nausea and vomiting that he wasn’t able to work and his family didn’t understand. He ended up being out on the street dealing, and he would drink in order to see if that could calm down the symptoms. And then he’d end up going to the hospital and he’d throw up there and they would accuse them of being a drunk.
Finally one of our physicians looked at it and was like, “Wait a minute. He’s presenting like some of my kids in pediatrics. I think he might have cyclic vomiting.” He started to do the research, he talked about his life, and we gave him that diagnosis, and it was about the lightbulb going off, like, “You mean that actually something’s been wrong all this time? How much that could have affected my life early on if I had known that something was wrong and that something wasn’t just wrong with me.” And that was—we wanted to be able to say cyclic vomiting syndrome out loud in prime time and give validity to patients out there who had never heard it before or family members who had been trying to tell their family what their kid was going through and the family was like, “No, they’re just trying to get attention,” whatever it took to be able to say, “No, this is actually a thing.”
It was really important for the community. I was so honored that the one pitch of a story line that I’ve ever made in all these 19 seasons of an episode, that they took the pitch and gave me the honor of directing it.
Martirosyan: Thank you for that, is there a beautiful note you’d like to end on?
Wilson: Oh, my!
(laughter)
One thing to note is, and this is kind of like a general life lesson, is regardless of who you’re looking at or who you think they are or what they’re known for, you just never know when somebody’s journey is. And every single body has some kind of journey going on that not everybody would know about. It goes to the level of compassion that we have for each other as human beings, the fact that we may make mistakes, we may get something wrong, may not do something the way that you may do it, but everybody is on their own journey. People will look at me and say, “I don’t know how you do all that,” and my answer to that is, “You wear the shoes that you have. You play the cards you’re dealt.” You don’t know what you’re capable of until the thing is put in your hands, and then you have to rise to that occasion to say, “OK, so now what do we do?” Because in the end, it’s all about trying to have the best quality of life that you can and being grateful and thankful for every single day that you get to have people in your life and get to do the things that you think you want to do in this life, just staying open.
As an advocate, my role has been to stay open, to hear, to implement, and to report in good faith so that those relationships can be built on trust and ultimately be able to give the best care and the best resulted care to my daughter that we all could do. It’s a collection, a collective. It requires a great deal of patience. (laughs) You bring your patience cap and your gratitude cap with you and—if you know that that’s what your life is about, then don’t assume that the person that you’re walking next to on the sidewalk or you see on the subway or who cuts your car off by accident or whatever while you’re driving isn’t in that same situation. We all have to give each other a break in this life so that we can get through it with as much success as possible.
Martirosyan: Certainly a lovely message. Give yourself and others a break!
Wilson: Yeah, exactly!
Martirosyan: Your daughter is fortunate to have you.
Wilson: Oh, my!
Martirosyan: Indeed.
Wilson: It’s definitely a journey, a big journey.
