Amara Zaragoza

Amara Zaragoza

is not letting a diagnosis stop her.

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INTERVIEW BY CARIANN BRADLEY • PHOTOS BY DAVY KESEY • JULY 16, 2019

Midnight Woman Moon

Cariann: It's pretty extraordinary that once you were diagnosed with MS, you took a step back from acting. What was that like? I'm assuming you'd been acting for quite some time, so I'm interested to know what that transition felt like.

 
Amara: It was terrifying. The whole diagnosis was. I didn’t know how I would make money or if I would need to move out of my house. More importantly, I was scared I wouldn’t be walking.  Could I live with stairs? I didn’t know how fast the disease would progress, so I wanted to do something big that would feed my soul for years. I put a lot of pressure on myself. I have thankfully calmed down a little. [Laughs]

 
CB: I have some past experience working under a supervisor who has MS, and I remember them doing some experimental-type treatments. It's my understanding that many of the treatments for MS are experimental. Could you explain what your experience has been with recovery and what you'd like to see change?

 
AZ: I started on a new drug that was a pill. It hurt my stomach and gave me hot flashes and hives. It was just generally unpleasant. I stopped taking it without consulting a doctor, then went on my [cross-country] horse ride. It was such a bad move because I had a relapse. Now, I am on Rituximab. It’s off-label, so technically experimental, but it’s been used for around 30 years. It’s actually pretty hard on me for about a month, even though they say it isn’t. The steroids with it are difficult, so maybe that’s it. But the rest of the time, I feel totally normal. I am happy to trade that month for six months without injections or pills. 

 
I haven’t had any new lesions since I was first diagnosed, so I am happy. I have about 15 lesions on my brain and three or four on my spine. I wish that doctors were more lenient in the beginning.  I understand wanting to act strongly at first to stop progression, but no one spoke to me about diet, exercise, meditation or anything natural. It was a lot of fear and really hard drugs. I think that for me dehydration is super important.  If I get too dehydrated that is when I start to feel the tingles and crawlings...it sounds weird but drinking a lot of water helps my symptoms.

 
CB: What natural methods and techniques have you discovered to be beneficial for you? I think further than potentially helping another person with MS, it's a good reminder for all that we should consult every possibility when it comes to healing our bodies. 

AZ: I am not an expert, so I don’t want to give medical advice! Different things work for different people.  However, I have learned that something is released in your brain after running about 10 miles that’s neuroprotective and possibly neuro-regenerative.  So I think I was on the right path of thinking with my ride, I just did it in too stressful of a way. I know a man with MS who in his late 50’s started running marathons.  Since he started running and taking super high amounts of magnesium salt baths he hasn’t had a relapse. He also cut out dairy and some other foods. I was super inspired by MS adventurers, and I think if you can exercise, it really helps you. Some people just can’t, and I understand that. But it’s a good goal. I cannot run 10 miles [Laughs] but I can bike and swim, so I try to get it that way. I’m also interested in fasting. There’s a way your body heals when you do it correctly. I’m curious about cryotherapy also but I haven’t done it yet. 

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CB: You mention it above –– one of your biggest accomplishments post-diagnosis was riding horseback throughout the country. I know there's probably a lot to talk about here, and you talk about a lot of it on your blog. But what was that experience like for you? MS really takes a toll on the body, so to do this was incredibly courageous and strong, by the way.  

 
AZ: Thank you for saying that it was strong! My ride was amazing. [Laughs] It was so hard! I loved planning it. I loved reading about it and contacting multiple people who had either ridden great distances or were MS adventurers. People were so kind and generous. I loved having a goal and making steps every day to achieve it. It was such a learning experience. 

 
Then on the road, there was more of that: meeting beautiful people and being scared of people. Being helped by cowboys and being yelled at by teenagers peeling out to scare my horse. An older man cried touching my horse because he was from the inner city and had been too scared of them and never had the opportunity to pet a horse. Such a beautiful study of people, but also a study on myself. I saw where I was naive, where I was too willful, where I was strong. In the end I think I didn’t make it [the entire way] because I chose to go alone. The horse was scared and so was I. I had a guy driving a jeep with horse feed, but he wasn’t with me riding. When I had the chance to ride with others, the ride was so fun and joyful. But when I was going through difficult stretches of highway with semi-trucks whizzing by, I think it put too much stress on my system and I started going numb. By the time I stopped, I could barely use my hands and feet and my torso was so numb that it felt like someone else’s body.

 
CB: How did you recover from that? How did you feel emotionally? That sounds so incredibly painful.

 
AZ: I was initially embarrassed. I had made such a huge goal and didn’t feel like I accomplished enough. Then the psychology of going to a chemo center to get an infusion...I was so confused about my life.  It was really hard. It took a long time to come back emotionally. It took about six months for my hands to work and not hurt, but I embraced it eventually. I wore black driving gloves and just told myself I was eccentric. Now it’s been a couple years and I’m me again. I’m happy, pain-free, and optimistic. I’m even scheming how to finish my ride! Not on a horse, but maybe a bicycle or something.  And I’m starting to be proud that I even tried such a crazy thing, no matter how far I got.

 
CB: What advice do you have for people coming to terms with diagnosis, or just anything difficult in their lives? What do you wish you could go back and tell yourself?

 
AZ: I would say not to challenge yourself too much. Agree to let people be there for you. Don’t try to do it alone. Listen to the doctors, but don’t run too quickly to big pharma. Do your research and don’t let them rush you. Most of all, be calm and be grateful.

 
CB: A friend that helps me with my brand Midnight Woman works a lot with our local Tennessee chapter of the MS Society. I know that you raised money and awareness while riding, but I'm wondering what the MS community means to you and what you want people to know about it. 

 
AZ: My sister also has MS. She was diagnosed about 16 years ago. She is on a walker now, but makes it sound so hilarious. She calls it her Cadillac. She has never lost her sense of humor, even though she has been through the most terrible moments. 

 
I was raising money for the “Race To Erase MS” by Nancy Davis. I chose the charity because of the percentage of donations that actually goes towards research and making progress instead of paychecks and bills. The reason the percentage is so high is that they have a “Center without Walls.” The scientists share research and receive grants, but she doesn’t pay for a building or salaries. It’s a genius concept they’ve designed, I think, 11 of the 15 drugs that are now available. When they started, there were three. I think that MS is so complicated that I am scared to talk about it broadly. There are people who run marathons and climb mountains and people who are in tilt recline beds and struggle to speak. When I lost my hands for awhile, I would wake up in the middle of the night crying in pain and I would just look at them because they felt so swollen and broken but they looked so…normal. I guess I would want people to know that even if it looks like nothing is wrong on the outside, your friend with MS could be feeling bugs crawl up their spine or their leg on fire. Be gentle, but keep your sense of humor. Let them have their Cadillac and if they say I’m tired, let them sit and tell them a funny story. We are all valid, we still matter, we might just be a little slower sometimes.

 
CB: It really is true in any situation that there's so much more happening beneath the surface with someone than eyes could ever know at first glance. Thank you for saying that, I think it is really important.

 
I did want to add, too, when I was doing research for this interview, I read what you wrote about your connection to Leonard Cohen on your blog – I felt such a strange connection when he passed also. I was in college, and I was a writing major. It was unplanned, but I actually ended up writing one of my final pieces on Cohen, and it became one of my favorite things I've ever written. The blog post you mentioned him in was a while back, but how has his art helped you? Are there any other artists or art forms that have helped you through your transition?

 
AZ: I love Leonard! He’s an amazing writer and an amazing person. After I got my first Rituxan infusion, I was quite down and an article came out that Marianne, Leonard's lover, was dying. He wrote her a letter that was read at her bedside. She reached out her hand to touch him as it was read. That image moved me so much that I wrote a song about it. I was feeling all these feelings about death, love and legacy. 

 
My neighbor, who’s a music producer named John Would, was kind enough to record it for me. Then I was lucky enough to have the string quartet that played with Leonard record on the song. Such a series of lucky events. Music in general helps me. Writing helps me. Working helps me. Anything to feel progress and like I’m moving forward. When I get in trouble is when I am stagnant with no auditions and too fatigued to create. Those times are hard. But that’s when good comedy or music comes in. My dog is always there to give me kisses.

 
CB: Your pup is in some of the photos for the piece – what's it's name? Looks like such a good boy/girl! I have a cat that I got not long after being diagnosed with PTSD in college. Even though sometimes she's a gigantic pain, she is one of the best parts of my days.

 
AZ: his name is Chombly! He’s amazing! He’s so gentle and sweet! I get nighttime panic attacks and when I wake up, I just have to pet him and it lets me know everything’s okay and I go back to sleep. I take him everywhere. [Laughs]

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"I didn’t know how fast the disease would progress, so I wanted to do something big that would feed my soul for years."

"I didn’t know how fast the disease would progress, so I wanted to do something big that would feed my soul for years."

"I didn’t know how fast the disease would progress, so I wanted to do something big that would feed my soul for years."

CB: Could you tell me a little bit about your show "Strange Angel"? It's a web series, correct? What's been the best part of playing your character?

 
AZ: “Strange Angel” is the true story of Jack Parsons and his journey to invent rocket fuel, start the Jet Propulsion Lab, and move up the ranks of an Aleister Crowley sex cult. Playing this character was a dream. I had been studying about the occult and sigils for a long time. When I saw the show was announced I made a sigil to get on the show. I became the high priestess! It was amazing. I got to chant and move and really play [in the role]. It was also weird because, while I had been reading about the lighter side of things, I didn’t go deep into the darker aspects. In the show, the magic gets very dark! So I got an education on that side of things, as well.

 
CB: Wow, I had no idea it was a true story! That's incredible. I love that you've also embraced the darker side of things – I feel like many people are interested in modern witchcraft/manifestation/new age studies, but they really avoid it's darker sides. While I don't think darkness should be dwelled on forever, I think it's important to understand all sides of something if you're going to practice it. I really respect you going all-in on that character. That's really cool. 

 
What projects do you want to take on next, or what's next for you in general?

 
AZ: I have a sigil necklace line coming out. I wanted to educate people about the way to manifest and use sigils in a light way. I sing mantras and teach people how to create their own sigils in a way that is good for all.

 
I am also recording music all the time. I put it on my instagram as @birdot and when I get a record together, I will post it there. I am so close! I have the song with Leonard’s quartet, a song produced by Jenny Lee of Warpaint, and other special guests.

 
As far as acting, I want to do a western! Let’s manifest that!


CB: Absolutely! It's beautiful that your diagnosis and this new path in your life has opened up all these other avenues to create, whether or not you were already doing them before. I find it admirable that you're making this meaningful music and your necklace line, too. Our photographer Davy also said that you paint! You really are such an inspiration to me and, I'm absolutely positive, to everyone you meet. Thank you so much for corresponding with me for l'Odet.

 
AZ: Thank you!

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For advertising opportunities, please write to us at goldie@midnight-woman.com

 

Have you been to Midnight Woman? That's our sister.

Midnight Woman is an online platform that welcomes contributors of all kinds to submit personal experiences anonymously.

We aim to redefine the way we talk about what's happened to us, no matter the subject. l'Odet exists for the named to encourage the nameless.

Midnight Woman is an online platform that welcomes contributors of all kinds to submit personal experiences.

We aim to redefine the way we talk about what's happened to us, no matter the subject. L'Odet exists for the named to encourage the nameless.