Sonora Chase is an actress and writer living in Los Angeles. She has now survived not just one, but TWO acoustic neuromas – benign, fast-growing brain tumors that have affected her hearing, balance, spatial awareness, and facial nerves. In this episode, she shares her brave story – which involves a battle with health insurance companies, the steep learning curve of discovering her rights as a patient, and one big happy ending: getting the doctors she wanted and having both tumors removed. In addition to her experience surviving her own invisible illness, Sonora is also the survivor of others’…she shares about the importance of finding community as you navigate mental illness and addiction, and how Al-Anon has been an irreplaceable resource for her as the loved one of individuals with addiction.
Join us as Sonora shares…
- what an acoustic neuroma is
- that a fellow actor also had an acoustic neuroma: Mark Ruffalo
- the difficulties of navigating the health insurance system with an acoustic neuroma
- that as her symptoms continued, she experienced facial paralysis without pain (but with numbness); and that it took her longer to discover the hearing loss associated with her acoustic neuroma
- that she didn’t realize something was really wrong until she realized the extent of the hearing loss in her left ear
- that the tech at her MRI was especially nice to her – and she suspects it’s because he could see the growing tumor in her brain
- that her acoustic neuroma was pushing her brain stem over, which causes trouble breathing and contributed to intense fatigue and balance issues, as well as constant nausea
- that visual stimulation also contributed to fatigue – half her brain was working twice as hard to keep up. Her fatigue persists to this day.
- that her inner ear was removed with her tumor, and she had to relearn how to walk after surgery
- how daily chores and tasks look when you are a Spoonie – and how she has to be deliberate in her choices
- about her amazing surgeon, Dr. Rick Friedman, neuro-otolaryngologist, and the translabyrinthine surgeries he has performed to treat her acoustic neuromas – which involve a medically-induced coma
- that acoustic neuromas are generally considered inoperable at 4cm…and Sonora’s first one was 3.8cm!
- that, based on continuity of care, patients can push for the same doctors for major health interventions – even if health insurance providers say “no”
- for three months, she spent 8-9 hours a day on the phone pushing her health insurance providers for the care she needed
- that the CA Dept of Managed Healthcare exists to assist patients in imploring health insurance companies to do the right thing
- that the fight for proper healthcare taught Sonora about her rights as a patient – but it took three months, because several operators weren’t even aware of their company’s legal obligations
- how important patient education is; that it is key to know your healthcare rights, and to be KIND to the messengers on the other end of the line
- how getting her surgery at UCSD was one of the best experiences of her life, because the Acoustic Neuroma Center at UCSD is incredibly well-designed with patient sensitivities in mind
- that she is still waiting for a surgery to “install” a bone-anchored hearing device (Baha) so she regains some hearing in her left ear
- how she connects to spirituality to manage her health from a psychological perspective – through Buddhism and crystal healing
- some of the complications of brain surgery, including a brain leak – which Sonora suffered after her second surgery (and is relatively rare)
- a personal analysis of the pain scale – that all pain is relative
- that Sonora is not only a survivor of invisible illness where her tumors are concerned, but that she has also survived loved ones with addiction problems, and regularly attends Al-Anon meetings
- that she credits the Centre for Neuro Skills in Encino for helping her get back on track after her first surgery
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Lauren: All right guys, thanks so much for joining us today. I'm here with Sonora Chase. Sonora is one of my very good friends. She's an actress and a writer based in Los Angeles. She lives with invisible illness; she’s got an acoustic neuroma which she's going to tell us all about. And she's also impacted by others who have invisible illness, which sounds very mysterious, but she will definitely get into that as well with us. Sonora, thanks so much for joining us!
Sonora: Thanks for having me!
Lauren: I'm so happy to have you. So let's talk about your invisible illness. Acoustic neuroma, which I'd never heard about until I met you.
Sonora: I hadn’t either! Till I went deaf. I did not know. So it was how I found out.
Lauren: Tell us what it is. What is an acoustic neuroma?
Sonora: Well, “acoustic” is obviously going to be in your ear. A “neuroma” is the standard term for a benign tumor — meaning, not cancer.
Sonora: Meaning, just healthy cells that piled up; over-produced and piled up. So in this particular situation, these healthy cells, schwannomas, schwann cells actually. But schwannoma is what you call it when there are too many…
Lauren: Sounds like fun!
Sonora: Yeah, sounds like dinner! Isn’t that a meat?! So they overproduced and accelerated in production and created a sticky lump — and it strangled my hearing nerve first and started reaching for my facial nerve … because they're right next to each other. And I had hearing loss. But I didn't know that I was losing my hearing because I always used headphones when I was on phone calls and so forth. And I just didn't know. It's something that doctors have no evidence of how they start, or why they grow. But I know for a fact that I fell off a horse when I was 17 years old. Butt first and head second. On this side of my head, my left side.
Lauren: (laughs) She's gesturing to her left side!
Sonora: I went literally one-two, butt, head. That happened when I was 17. And then in 2014, although I was buckled in and my seat was straight up — my head didn’t hit the side of the car at all, but my brain hit the side of my skull. And that was the injury.
Lauren: That's like a whiplash.
Sonora: Yep. So that was the second impact. And in my experience of my life, that's connected. Because usually when people have an acoustic neuroma, they don't get it until they’re really old — senior, senior citizens — and most of their hearing is lost and people tend to think that's just hearing loss from age. And then they realize, very late in life, that they actually have this benign tumor growing, with the cells just reproducing.
But what they're trying to do is protect the hearing nerve … oh, there's a trauma so we need to multiply and we need to pile up and protect and protect. And what it does is build out towards the facial nerve. Mark Ruffalo had one, too.
Lauren: No way, oh my gosh!
Sonora: So, one of the risks for the surgery to remove this is damaging the facial nerve and you could be paralyzed on half your face.
Lauren: Which, especially if you're a performer, could be a little bit of a problem!
Sonora: It threw him into a depression well over a year long, because half of his face was paralyzed.
Lauren: But it's interesting that he's speaking up about it. And that you, I presume, found some community in that as well.
Sonora: It’s a very small community and the most potent support is actually on Facebook with Facebook survivor groups.
Sonora: And so what happened was, I was on the phone to my mom …
Lauren: And this was after 2014 sometime …
Sonora: Yes. So the concussive symptoms that I had from that car accident were lingering six months later. And when I went to my doctor, and I said, “I still have brain fatigue. My balance issues are still crazy. The PT didn't work. I can no longer do a tree pose in yoga. I've gone down to yoga 1, I still have headaches, I have incredible fatigue. Brain fatigue, forgetfulness …”
Lauren: Brain fog.
Sonora: Brain fog, yeah, I actually wasn't having memory issues. It's just that my brain got tired. And I did have three weeks of complete brain rest, by the way.
Lauren: Okay, what does that look like?
Sonora: Brain rest is when you literally don't think. You don't hear, you don't think, you don't talk, you don't listen. It's pitch black. We put up blackout curtains in the room. Not just the kind you can buy at the store, but the kind you get on the Internet that really block out all the light, all the sounds. So I couldn't listen to audio books or music or TV.
Lauren: Were you so bored??
Sonora: No. Here’s the thing …
Your brain really does have 50,000 thoughts a day. So I wasn't bored because my job was to set the thoughts down.
Lauren: Which is not easy. I mean, for people who haven't really meditated before, that’s like going into a crazy meditative state.
Sonora: And that was actually what meditation was … I acknowledge you and I release you, and setting the thoughts down. And if I ever fell into the anger of being hit by somebody who pretended to have insurance and didn't and wasn't paying attention and probably didn't even have a license … you know, the blaming of that … my head would just get so inflamed. So anyway, that was the car accident.
Lauren: So was the brain rest something the doctor told you to do after the car accident?
Lauren: Okay. So it wasn't even, at this point, Acoustic Neuroma Land?
Sonora: Well, no, it wasn't.
Lauren: Or at least acknowledged as such.
Sonora: Correct. And the insurance company, of course, once I got the diagnosis of acoustic neuroma, they wouldn't take any responsibility for that whatsoever.
Lauren: Oh, fun. That's great. Because they were probably, like, well, that's not related to the accident.
Sonora: That’s what they said, yeah. And a case had just been dismissed because ‘the evidence wasn't there yet’.
Because so few people have this, they haven't studied us enough.
So six months later, I went back to my doctor. I'm still symptomatic. She said, “It's not the concussion. It's got to be something else.” She sent me to a migraine specialist/neurologist who assumed I had a facial migraine … have you heard of that? I had numbness, which was in fact the acoustic neuroma starting to wrap around the facial nerve.
Lauren: You had the numbness and you had the hearing loss at this point?
Sonora: Oh, actually, I did not know I had the hearing loss yet. So it took me a couple of months to get that appointment; she gave me some meds for migraines. And then, maybe a month-and-a-half later, I was talking to my mom on the phone. And it was the holidays. And so I had a glass of wine. She had just called to say Merry Christmas. I was holding the phone in my left ear, which is unusual because I'm right-handed — but I was holding a glass of wine in my right hand. And I couldn’t hear my mother, could not hear her at all. So I switched. And I thought, ‘Well, that's funny. My ear must be clogged.'
Lauren: Probably the flu or something …
Sonora: Right! I'd never heard of such a thing. Then I picked up the phone, the landline, when somebody had called, and I just couldn't hear out of that ear. And that's when I knew something was really wrong. I went to the store and I got an earwax kit to wash out my ears. So my ex-wife and I were in Baltimore at the time, and we went back to New York before we came to LA. We were in both places. And we immediately made an appointment for a hearing test in New York. I was trapped in that little booth with all the noises and the dings and the dongs, and I couldn't hear anything out of my left ear. We tell my doctor what happened, and she immediately sets us up with an ENT.
Lauren: Tell us what an ENT is?
Sonora: The ENT is an Ear, Nose, Throat doctor. And what they'll do is examine all of those things and then send you to another hearing test because they want to make sure …
Lauren: It’s a liability concern, yeah.
Sonora: Exactly. So I went through that again, and he said, “Okay, yes, you are deaf in that ear almost completely, and we're going to give you an MRI just to rule things out.”
But he didn't tell me what we were ruling out … because, why would you? You wouldn’t want to scare somebody. And I thought that the tech at the MRI place was really nice to me. And now I know why. Because he could see it.
Lauren: So luckily they called for the MRI, and that's how they caught it. And when was this, would you say … how long ago?
Sonora: That would have been December of 2015. Actually December, but really January when I got the diagnosis of an acoustic neuroma.
Lauren: Okay. So really only like three years ago?
Sonora: So then ...
... I had so much fatigue that I couldn't do stuff; it was pushing my brainstem over. So that causes trouble breathing. It causes balance issues …
Lauren: Which you were already experiencing.
Sonora: And as my brain was adapting to single-sided deafness, it was tired.
Lauren: Sure, it was overworking.
Sonora: It was compensating. And you know, I talk about this a lot …
... the number one problem that we have is the lack of a vestibular system.
Lauren: What is that?
Sonora: It's the entire system where you take in information — audio information, but also balance.
Your brain is adjusting to only having one inner ear, when your inner ear is removed. I had to re-learn how to walk. And part of the surgery … when they're taking out the tumor, they’ve got to take out your entire inner ear.
Lauren: Oh my god. So they take it out and they put it back in.
Sonora: Nope, it's gone.
Lauren: So you have no inner ear.
Sonora: I have no inner ear.
Lauren: How the hell do you stand up straight?
Sonora: It’s very hard. Actually, it’s fine now.
But the reason I was so fatigued for that first year, not only was the tumor growing, but my body was trying desperately to adjust to single-sided deafness, no inner ear, and taking in the visual stimulation that we all take in. We're sitting in this room and there are thousands of things in the room. But I only have half of my vestibular system to take in that information. Therefore, half my brain is working twice as hard.
Lauren: And that's something that you're always going to live with?
So people who have any kind of brain tumor — and this is considered a brain tumor because it's in your brain — when they have the surgery and they remove a brain tumor, you will simply have fatigue forever, in general. The amount of fatigue changes, the level of fatigue changes, the intermittent nature of it changes. But it's something that feels vague to other people … not to us!
Lauren: Not to Spoonies! We get it! That was one of the great things when you and I first met … because we became friends last year … I can't believe it's only last year!
Sonora: We have a friendsaversary coming up!
Lauren: We do have a friendsaversary coming up! And that was one of the things that we bonded over very quickly in the beginning, I think, was that we both got it. We both understood the brain fog. We both understood the energy levels …
Lauren: And the dropoff, yeah.
Sonora: When it's done, it's done. You don't get more.
You know how many people told me to take a nap? I was like, ‘Let me tell you what to do with your nap …” Because that's not how it works. Here's the thing … If you're tired because you didn't get enough sleep … sure, get more sleep. That's not why I'm tired. I'm tired because half my brain is compensating for the other half of my brain. And when I'm done, I'm done. I'm out for the day. Taking a nap and getting up and doing stuff doesn't exist. It would be like telling a healthy person to get up at four in the morning and just start your day.
Lauren: I don't even know if a healthy person could do that comfortably!
Sonora: No, they can't. That's the point.
And when you have brain fatigue, you're not sleepy tired like you need a nap. It's done, the day is done.
Lauren: You just have fewer hours in the day. It's the Spoon Theory.
Sonora: You get your amount of spoons and that's it.
Lauren: You have your seven spoons, where a normal person has 25, and you just adjust to living that way. Was that a hard transition for you?
Sonora: Yeah, I mean look at my apartment right now! We're sitting in my apartment. I made food three days ago and the dishes are still here, all the pots and pans. And the way that I compensate is, when I can cook, it’s got to be the first moment of the day when I have the energy. I'm not just making one meal. I make several meals and I make enough to last several days. So what I'm actually doing is re-heating, the whole week.
Lauren: Yep, I do the same thing.
Sonora: You have to.
And I don't have the energy to cook and clean; it's one or the other.
And there were times when I thought, ‘Oh, I can't bear to cook!’ But it’s, ‘No, I can't bear to clean up after I cook.’
Lauren: Well, I totally relate to that. And one of the other things that I think is great … we have a WhatsApp chat. And we send each other voice notes a lot. You've had two surgeries now and we'll get into that. But we started doing the voice notes, because at a certain stage, it was easier for you to listen than to be looking at a screen. And I love that in our voice notes to each other, we’re often celebrating the small victories. Like, “Hey! I woke up today. I washed my hair!” It's always like it's a big deal — when you have limited energy reserves. And we're able to say, “Good job! Good job for cooking!”
Sonora: “Job done, you!”
Lauren: For your average person, it’s expected that you get that sh*t done. But for us, it's a little bit of a different story.
Sonora: It's a big deal!
Life skills, surviving stuff. It's a big deal! And most people aren't in survival mode. And they would be considered lazy if they didn't do the dishes.
I'm like, ‘Look at me. I made some stuff. And really good stuff.’
Lauren: (laughs). ‘I made so many soups today!’
Sonora: Everything I have in my kitchen, I want to give a big shout-out to. I've got a lot of gadgets. I'm a gadget freak. I do find it very meditative to chop vegetables; I can stand there and chop vegetables— which I actually did three days ago when I made this mess.
Lauren: I have one of those choppers and I just stamp on it for a while.
Sonora: I have a food processor and I hit buttons on it. I have a soup blender which blends and cooks in the same item. I've got slow cookers. And one time I made four different slow cooking things. And it got me through a week. And I'm dating somebody now, so I’ve got to make more food; it's not just me. I'm not gonna be, like, “Sorry, babe. I didn’t make enough for you!”
Lauren: (laughs) “No soup for you!”
Sonora: And she has an autoimmune disease. So I've got to be conscientious about what I'm putting in it. And I think I'm the first person so far who gets it. And wouldn't conceive of putting dairy in her food. Or whatever it is she's not supposed to eat. And I’ll say, “I think you're also not supposed to have soy," and she's, like, horrified that I know these things!
Lauren: But you’ve also become super-educated as a patient. And it's been really interesting because you and I have been going through stuff simultaneously in our journeys to health, and been able to be there for each other in really unique ways, I think. And we've become educated simultaneously as well. Like, one of us has learned about celery juice. “And do you know about the benefits of celery juice?? Everyone, drink celery juice!”
Sonora: Which, by the way …
Lauren: … you love!
Sonora: Oh my God, I love it so much. But when I went to see my neurologist, the one who did the surgery, I'm like, “Okay, I gotta run some quackery by you." Because yeah, I love my quackery and I run everything by him! And how would he know, he's cutting on brains all day; this isn't his area; but he's like, “You know…” It's a very LA thing to do because he doesn't want to tell me not to do it … because hey, who can poo-poo celery juice, right? And if it gives me hope, and it makes me feel better, then drink it!
Lauren: I also think it tastes nice. So I’m, like, fine … what's wrong with drinking a bunch of celery in the morning?
Sonora: Yeah, I can handle that.
Lauren: Yeah, exactly. If anything, it's going to help you flush your system of whatever toxins — although it's supposed to be great for your liver.
Sonora: I think it does what it says it does. I mean, it’s celery — nobody’s claiming it’s gonna cure you of anything in particular, immediately. I mean, there are some claims … but I think that it feels good. And even if it's psychosomatic, I'll take it. If it's a placebo effect, give me the placebo.
Lauren: And it's not like a placebo where you're eating a bag of Skittles. It’s a placebo where you’re buying organic celery and juicing it, how bad could that be for you, fingers crossed?
Sonora: And it's a step in the right direction. I'm eating a vegetable. How lovely.
Lauren: Yes, exactly. And it's another way to get your veggies. Yeah, there you go. So we were talking about the first surgery …
Sonora: Yes. Let me tell you what the surgery is. Because there are people out there who have this diagnosis, they might want some more details. My doctor is Dr. Rick Friedman. And Dr. Rick Friedman is a neuro-otolaryngologist. I love saying that word, which just means he's a neurosurgeon and an ENT doc.
So his job is to do what's called a translabyrinthine, and that's when they drill a hole in the occipital bone behind your ear (by ‘they’ I mean him) and he proceeds to cut through everything there, through this canal, until he sees the tumor.
And then when he sees the tumor, he tag teams the other neurosurgeon, which in my case this time was Dr. Schwartz, also at USC. I highly recommend these people. They're amazing.
Lauren: Sorry to interrupt…you said USC, but I think you mean UCSD?
Sonora: Thank you. Yeah. So the first time I had it was at USC. The second time, UCSD. So what happened was, I loved Dr. Friedman so much, I followed him from USC to UCSD. And this is important because he and Dr. Schwartz started this program and were able to tailor it to what we needed. When you get out of brain surgery and you're in the ICU and they bring you out of the coma maybe three days later …
Lauren: They put you in a coma for this?
Sonora: Oh, yeah. It's serious.
By the way, normally, when the tumor’s over four centimeters, it's considered inoperable. And mine was 3.8.
Lauren: Well, what happens when it’s inoperable? They just let it take over?
Sonora: Well, if it’s Dr. Friedman, he might do it anyway. Because his assistant, Kris, had one that was over 4 — and she was nine months pregnant! Love her to death; she is his patient coordinator, and she's extraordinary. She's helped me so much.
It's really important to have a patient coordinator wherever you go.
Lauren: And we're going to get into that … because I know that, speaking of labyrinths, the labyrinth that you have been through, just to get coverage for this is, like, another level.
Sonora: Oh, can I just say … that's really important. When I went to USC for the first surgery, which was in early 2015, I had Dr. Friedman and the accompanying neurosurgeon was Dr. Giannotta. Dr. Giannotta is still there; great doctor. And I had insurance through my then-wife, who was at NYU. And yet I was in LA and I was able to get this procedure at USC. However, we then got a divorce later that year … which is really fun to do right after brain surgery...!
Lauren: I bet…gosh!
Sonora: Gosh. So that was 2016. 2017 happened. And then in 2018, when I had a follow-up MRI … by this point, I was no longer on said fancy healthcare. I was on MediCal.
And so what I want people to know is, that based on continuity of care, you can get that same surgeon.
If you haven't already discovered … and I'm sure you have if you're on MediCal or any kind of free health care … a lot of the doctors are not good. Flat out not good. Yelp reviews are really good. I was a little shocked and saddened I had to go to a Yelp review to find out stuff. But what I want you to know is if you continue to fight, which means every time you talk to somebody on the phone who says no, you hang up and call back. I did this for eight hours to nine hours a day for three months.
Lauren: And this is really important to note because you were able to put the time into it. And not everyone is able to do that, or may need someone to help them do that. I had a lot of the same issues, partially because emotionally I couldn't even handle it. So I was always amazed when you'd leave me a message at five o'clock on a Wednesday and say, “Well, I've just been on the phone for eight hours today. And here are the inroads I've made!” And if you can't do it yourself, and if you're not prepared to fight, that's where it's really important to get someone on the team with you to help you make those calls. You need that support, and you need the community even if you're doing it yourself, right?
Sonora: And it doesn't have to be one person. It can be five people who really love you and don't want to see you die. And if they love you that much, they’ll make certain calls and do stuff. And in that case, you have to let go of the reins of how it's done. Some people have different personalities about stuff.
And you know, it might set you back a little bit dealing with certain people. But I also was up against the fact that I had no one; I had no advocate, I had to do it. And I was living off savings. And then credit cards. And I had no other choice. And my only way out was to fight.
Can I just add one more thing, please? Since we're on this roll … the California Department of Managed Health Care is how this actually happened, and you were the one who told me about them. Now, in the conversations I had with my health insurance company, which is HealthNet … at some point, someone said, “You can file a grievance.” And it went right over my head because I was exhausted, and I didn't have anything left. It actually took you telling me: “File a grievance.” And so I did. And then someone at the health insurance company said, “You can also do this outside of the health insurance company with California …
Lauren: I told you this.
Sonora: I heard it from you. But when they told me I wasn't listening, because I was too tired.
So I want everyone who hears this to remember that this organization exists in California; it may exist in your state or your country. And their sole job is to implore health insurance companies to do the right thing.
Lauren: It’s a worthy job to have, isn't it?
Sonora: It really is, but they won't do it just based on their moral compass. What they're going to do is look for facts. So I went to a neurologist that was within my MediCal plan who insisted on my getting another MRI — when I’d just had one that said, I have this tumor that grew back, the second time.
Lauren: And in terms of growing back, is that common?
Sonora: No. Oh, that's another thing.
If you're listening to this and you may have an acoustic neuroma …[regrowth] is not common. This is really, really, really unusual. Unpredictable. Spontaneous. It's so rare.
Lauren: Double winner.
Sonora: I’m a double winner! So what happened was, I got the second MRI and this guy was a quack. He looked up acoustic neuroma on the computer.
Lauren: So he didn't even know what he was doing.
Sonora: He didn’t know what he was dealing with. I won't go into all the things that he said that were ridiculous. But he just wanted to, like, stick his finger in it! So he insisted I get an MRI.
Well … you know what, it's a good thing I did get an MRI, because it showed that within five weeks of having the first MRI, it had grown 20%. So I was able to send this information to the senior counsel at the California Department of Managed Health Care and say, according to this, this tumor will be inoperable in two months. You need to decide and you need to do it now.
Lauren: So you lit a fire under their asses.
Sonora: I did, and the guy still said to me, “You know, we're not your personal attorneys, yada yada. We’re here to protect the consumer, blah, blah, blah.” And I said, “Well, as a consumer, I'm very disappointed in that.”
Lauren: It's also understanding, not only as a patient with rights, but also, I think, very particularly as a woman … that it's okay to express your discontent. And I think we are — particularly women again — we're taught to be small. And it's about learning to take up more space, and learning to stand up when someone’s not giving you what you pay for.
Sonora: And not only that...
...take up the space with your emotions. We are not hysterical. These emotions are valid. And just because men may not lead with emotion when they're asserting themselves, doesn't mean that’s superior.
So I did put on some coolness there, though; I really reined it in! I said, “I'm disappointed to hear that because, as a consumer, I contribute to this; I’ve contributed to this plan my whole life, and now I'm in need of it. And what I need is for someone to stand up to this health insurance company. And based on continuity of care, and the fact that this will be inoperable in two months, make it happen.” So he did; he absolutely did. Thank you, Ryan!
Lauren: And that was so lucky. Because I remember every day there'd be an update, “Okay, I got through to this person and she didn't want to help me. And I got through to that person and he didn't want to help me.” You came up against a lot of people who were, to be fair, for the most part trying to do their jobs, but not fully understanding your case or willing to hear you out. And you came across a lot of roadblocks because of that.
Sonora: Actually, it wasn't so much they didn't know my case or want to understand it or hear me out. It was that they didn't know the law and how to apply it.
Lauren: So you had to teach them.
Sonora: I actually didn't know either!
What I did was, I literally hung up with people eight times a day and picked right back up and called, and got someone else. And at the three-month mark, I got a woman who said, “Oh, Dr. Friedman. Okay. So this is who did this first surgery the first time?” “Yes.” “Oh, and you just want to go to him again?” “Yes.” “Oh, have you seen him in the last year?” “Yes.” “Oh, continuity of care. Hold on.” Click, click, click, click, click. “Okay.”
Lauren: But it took you a couple of months to get that ‘okay’.
Sonora: Three. Because she said, “Oh, it's just a form … hold on.” Click, click, click, and she filled it out and sent it in. And suddenly I had continuity of care.
Lauren: So the key here is education, isn't it? It's knowing what your rights are, so that you can actually tell people when they’re violating them.
Sonora: Yeah. And also acknowledging that these folks, they didn't go to school for this job. Sure. There is no program; they don't know. And to be as generous and kind to them as possible, because they're marking all that down in your file. (Laughs)
Lauren: They’re lucky they had you on the other end of the phone. I would have been MAD! (laughs)
Sonora: You know, I just thought, I don't know; how can I expect them to know? And I’ve been in a call center before so I understand that we're never trained enough. But if I go through the ranks — and I got several people several times — oh yeah, we talked yesterday at 3 o’clock …
Lauren: And take notes of that. And remember their names, so that you can create that repartee as well.
Sonora: It’s true, yeah. It’s just like any other business. So! Speeding it back up … Dr. Friedman and Dr. Schwartz, they did my second surgery, which was totally different because the opening was already there. I had a plate; he just had to unscrew it, take it off, go in, take it out. But the difference was, since they started this program there, they could make these subtle changes. Whereas, at USC, good grief.
You cannot tolerate light and sound. You're throwing up nonstop. First of all, because you only have one inner ear. So you throw up nonstop and then you're trying so desperately to recover. And somebody on the other side of the curtain is talking; their guests are talking. People are coming in and doing things, and the noise is just insufferable. And then the light … they want to turn on all the lights all the time, but you can't tolerate these things. And then they're slamming the door all the time, because that's how you open and close the door in hospitals. At UC San Diego, the doors don't open and close in that way; they slide shut ever so gently.
Lauren: So it's just those little differences they’re really sensitive to.
Sonora: It's airtight. It's soundproof. And you have a button to lower the shades. And nobody's in the room with you. This was like going to a five-star hotel. It was incredible. And of course, these two are known to be some of the best, if not the best, surgeons for this procedure.
Lauren: So you're very lucky that you found them in the first instance, and that you were able to work with them in the second instance. But it did take a fight.
Sonora: Oh yeah. And that has to do with MediCal.
And what I tell everybody now is, when you find a specialist for your invisible illness, make sure you're going to them at least twice a year. So you will always be qualified for continuity of care. This will never have to be your struggle, ever.
Lauren: Now, you mentioned that you didn't have an advocate?
Sonora: I did not have an advocate. My ex-wife was my advocate the first time around …
Lauren: And the second time, it was really you. You've mentioned that you had community in these Facebook groups, and obviously we were all checking in on you, and you were able to get people to drive you down to San Diego. So you were still able to create a community around yourself.
Sonora: Oh yeah, yeah. I did the heavy lifting in terms of advocacy with doctors. Oh, and I didn't even tell you about the horrible primary doctor I had. Good grief. If something didn't come down on a pulldown menu when they were trying to submit a referral request, then they were just, like, ‘Nope, you're out of luck.’
Lauren: Now, in that case, did you find a new primary doctor?
Sonora: Eventually I did. But in the middle of all this, I simply couldn't. So I had the health insurance company call them and walk them through how to send a fax.
Lauren: Oh … good grief, indeed.
Sonora: So, what they were unable to get them to do in time for the surgery, was to get this approval for what's called a bone-anchored hearing device.
Lauren: And this is really annoying, because it sounds like you had to have a second surgery in order to get the hearing device implanted. Or the third surgery at this point. So you had the first surgery in 2015/2016 to remove the tumor.
Lauren: They got the tumor out …
Sonora: Well, most of it. They can't ever take it all out because it's around the facial nerve.
Lauren: And it could cause nerve damage.
Sonora: Yeah. Although some people actually catch it before it hits the facial nerve.
If you're listening to this and you have an acoustic neuroma, please know that no two neuromas grow the same — the same direction, size, width, reach, whatever — they just don’t. If you have hearing loss, but it hasn't hit your facial nerve yet … good grief, get it taken care of before it does. Because the problem I'm having now is that I will always have some on my facial nerve; I will always have numbness and drooling, dry eye … and I have this patch behind my nose where it's dried out so I always have skin that peels off and dries and is bloody. And not only that, but they can continue to divide and grow, and they’re clinging to my facial nerve. I can never take it off; I have five millimeters left.
Lauren: So does that mean that you may have to have surgery again?
Sonora: If it grows, yeah.
Lauren: So you are monitoring this with regular MRIs.
Lauren: So it's really amazing to me because you're so strong about it, and so resolved when fighting it. But were you so scared when you found out?
Sonora: No, I was too tired.
Lauren: Yeah. So in a way, the fatigue is actually useful in that way because it prevented you from the extra stress.
Sonora: Yeah (laughs)
Lauren: Because in all the conversations we've had about it, you never been scared, and you've never been afraid of charging forward. That's one thing that I've really noted about the way that you've approached this entire experience.
Sonora: I would say a lot of that comes from not having a safety net.
I was disowned for being gay at a very young age, so I know that it's all on me. There’s no one else to reach for.
This is different now. I have since been repossessed and things are fine (laughs).
Lauren: But it gave you toughness.
Sonora: It gave me resolve. Like you said, I get it done. It's me.
Lauren: Though it came out of sad circumstances, it's also really empowering.
Lauren: And I have to say, really inspiring. Because you would leave me a message saying, “I made all these calls.” And I'd be, like, ‘Wow, I can make calls like Sonora. I can do it. I can do it.’ Because you were able to do it. So I'll say that even though you felt like you didn't necessarily have an advocate, we were all obviously behind you.
Sonora: Oh, yeah, let me roll that back then! Because I meant like an advocate on the phone saying “Give me this now.” But really, I could not have done this without my friends. You and Camille and Whitney and Claire… and all my friends that came forward to help me. It was remarkable. It was really, remarkable.
Lauren: And we did things, like we had a meditation circle for you. Which was great. You actually organized it! Because Sonora also does crystal healing, which is really remarkable. And I think that's something that's probably, in a lot of ways, given you a center from which to work and meditate.
Sonora: I need something physical. It's one thing for me to say a prayer and to believe in angels. Or you know, that I'm still connected to my loved ones who passed away … or these things that I can't see.
But sound — and interestingly enough, I have an acoustic neuroma and I'm deaf on one side now — but I still feel the vibrations of sound. And that's a big part of healing for me.
And meditating. I’m also a Buddhist, and I have a practice called SGI, which is Soka Gakkai. It’s Japanese; everything's in Japanese. And we chant, because we believe in the power of healing with vibration. That's the stuff I do! But I need friends in my life.
I need to be able to call people and check in and be accountable outside of myself. And by people who get it. The people I'm talking about all have invisible illnesses.
Lauren: Or know people who have them, or have loved ones who do. So, I know I mentioned that you do crystal healing. And through all of this, you're putting so much work into making all these phone calls and navigating the system. How are you able to balance the demands of work and life with being somebody who only has so many spoons?
Sonora: First of all, crystal wise … carnelian. I highly recommend carnelian.
Lauren: And if you need to buy crystals …
Sonora: (laughs) I’m @TheHiddenGemWeHo on Instagram. You’ll find all my stuff there.
Lauren: We’ll link to you on the website as well.
Sonora: Ok! I actually started making these things called crystal grids. It's what we call sacred geometry — these 22 shapes that happen all through nature. These are 4000-year-old designs that have just been always in use in architecture and design, everything. And I burn them on these planks of wood, these wood rounds.
Lauren: They’re beautiful.
Sonora: I love them so much. And it's a great way to display your crystals. But also when you want to set an intention, it’s very powerful, and carnelian is a stone of action.
So I would start with my mindset. I would start with a prayer. I would start with my mental health first.
And in terms of balancing work, when I was recovering from the first surgery — which would have been 2016 to 2017 — I was very concerned about auditioning … because I’m also an actor … and memorizing lines. And I had to book out for a while. And then I booked back in. And I thought, how am I ever going to go back to my survival gig, which is as a paralegal. It just wasn't feasible at first. So I had been doing these sound baths and buying crystals, and I loved it so much I started buying them wholesale and then selling them.
Lauren: So it became a business sort of by happenstance, if you will. And that managed to give you a purpose other than your health when you got out of bed in the morning. It would also give you a job that you could control the hours of?
Sonora: Correct. Because I only had so many hours in the day.
So you asked, How do I balance, manage? There’s no such thing. It’s, ‘What do I say NO to?’ So I said ‘no’ to, I would say, 80-90% of my friends — because I only have so much energy. And that's heartbreaking.
I said ‘no’ to auditioning for a long time. I actually said ‘no’ to my commercial agent. I just had a heart-to-heart and I said, “You know, my heart's not in this. I love you guys, and I would love to book a commercial. But I don't want to right now; I want to heal.” And they got it.
I had to be willing to spend a day in bed.
Lauren: Which is huge …that’s so hard when you’re super independent and when you're kind of a badass like you are! When you’re used to being able to go out into the world and own your sh*t, to wake up some days and be, like, ‘I just can't today.’ And the number of phone calls that I've had with you, where we've both been, like, ‘Today I just let myself be.’ And it's really hard to wrap your head around that. How did you get there mentally?
Sonora: Well, I didn't have a choice. I went from being someone who produced and performed, theater and short film and indie stuff, and network television. And I'm also a writer.
So I went from doing all of that stuff and juggling a trademark paralegal position … to not being able to put my clothes away after I folded them. I mean, the fact that I got them out of the dryer was incredible.
Who knows if I could actually fold them. I would sometimes just shove them on the shelf. But then I had clean clothes — and that was a big victory.
And what helped me was actually our friend Camille saying, “When you do have extra energy, let it go to healing your brain. Don’t do the chores.”
Lauren: It's a really loving thing to say.
Sonora: It reminds me...
...I'm working hard, I'm healing and it takes as long as it takes. And I know that when I'm healed, my brain will serve me well.
Lauren: And one of the things that we did do as well when you went for your second surgery, was that we created a group where every day someone was checking on you. And some days, Camille would come and cook you something. Or Whitney would come and do your laundry for you. So there were people helping you with mundane activities, that helped you get through the day.
Sonora: And I couldn't physically do them. So this part you're talking about, this is the just after the second surgery.
Lauren: Now you're doing it yourself.
Sonora: But … I remember my friend, Claire, came over and she brought me groceries; some things already made, and some things I just had to boil. I had gone down that morning because I thought, you know, I'm two weeks out, I'm doing great. I can go down the stairs and put my laundry in. Well, I could put it in — but I couldn't get it out. So I asked her, “Would you mind just bringing it up? I have one of those drying racks. I can just put the things on there.” So that was a real humbling moment.
But how do I really manage life after brain surgery? I let the brain surgery come first. I just do. And also, I can always pull out the brain surgery card!
I needed to suspend my Actors’ Equity stage union membership, and I never did! So I'm over $400 behind in dues. But, you know, all I really have to do is say, “I had brain surgery; I forgot.” It’s okay.
Lauren: That’s the nice thing about the actors’unions; they tend to really understand about stuff like that, too.
Sonora: But everybody should!
And we shouldn't have to say ‘brain surgery’. We should be able to say whatever it is, without anybody not understanding. And I say ‘brain surgery’ as a shorthand because nobody's heard of acoustic neuroma. But sometimes I have to remind myself, ‘Oh yeah, you just had a second brain surgery, four months ago.’
Lauren: Well, we've talked about that a lot, too; we've all remarked how quickly you healed. The first few weeks were kind of shaky, and there was an emergency room trip.
Sonora: Oh, yeah, actually, there were a couple things I want to talk about.
I had a brain leak, which again is incredibly rare and you can’t prevent it. If you're listening to this, don't panic. There are certain things they tell you not to do to avoid what's called a CSF— cerebrospinal fluid – leak. It'll come out your ear, down your nose, whatever. But here's the thing: Don't panic. It didn't happen to me the first time; it almost never happens. It happened to me the second time … I’m okay.
And when I went for my one-week follow-up, they saw me with a box of tissues and were, like, ‘Uh-oh.’ And I said, “Oh yeah, I've just got a runny nose. But don't worry.” We had ruled out a CSF leak before I left the hospital; they told me I was okay. But now Dr. Schwartz is, like, “No, lean forward. You need to book a hotel, you're staying overnight. We're putting you in the hospital and you're going to have the surgery.”
I will say the reason why there's so much alarm around it and why they're constantly checking for it … the nerves in your inner ear … it's so tender. It's so painful, that when they actually have to graft skin in your inner ear to plug up and tie off this leak, it’s more painful than brain surgery.
Lauren: In terms of the healing?
Sonora: Yeah, it was so bad that I never got ahead of the pain. I was never lower than 8. And I didn't know what morphine was.
Lauren: When you say you were never lower than 8, we’re talking about a pain scale of 1 to 10. Which is very common for people with chronic pain. Or if you're experiencing pain. We ended up in the emergency room one night, because your pain was so bad that you couldn't manage it. And I remember having a conversation with you then. You were a little loopy, because you were in such agony, and then they started giving you morphine.
Sonora: And then I started chuckling. And then Whitney brought cupcakes. And before I knew it, you guys …
Lauren: We had a party!
Sonora: If you don't know what morphine is … I'm just going to tell you right now.
If you can't get your pain below whatever is comfortable for you, then oh my gosh, go to the ER.
Because they're the only ones who can give it to you. And it's the only thing that really worked; after that I had no problem.
Lauren: Well, and that was the thing, that, for you, there was a journey when we were sitting in the emergency room, of acknowledging that the level of pain you were at was no longer comfortable for you. And recognizing what your pain tolerance was. Because I think … and again, this is a very female thing, right … that we tend to say, ‘It’s okay; I can live through this. It's okay; I can push through this.’
Sonora: Or, ‘Hey, I didn't know there was another option.’
I didn't ask. And partly because I was in too much pain. And there's one more level. In addition to the “woman treatment" that we got, redheads … I'm a natural redhead … and this goes for strawberry blondes and auburns, because you're half … part of the mutation on Gene 22 that gives us red hair and a lack of melanin also gives us 20 percent more pain receptors.
Lauren: Holy sh*t!
Sonora: People have been telling us our whole lives that we're too sensitive. No we're not, we're exactly as sensitive as we should be when we have 20 percent more pain receptors.
Lauren: That’s crazy! How did you find that out??
Sonora: Yo, Wikipedia! (laughs)
Lauren: We’re gonna Wiki the redheads!
Sonora: (laughs) No, the truth is, I have friends who are nurses and in the health field, and when that study was released, they sent it to me. I don’t have to anymore, but 20 years ago I had to carry around a printout of the study and the finding, because they wouldn't give me enough anesthesia.
Lauren: For what, though?
Sonora: Well, I had skin cancer on my eyelid, and they wouldn't give me …
Lauren: They wouldn’t give you anesthesia to remove it?
Sonora: Not enough anesthesia.
Lauren: Oh, come on. I mean, I understand the risks involved there too, because if you give someone too much anesthesia it could cause longer-term problems.
Sonora: Not if it’s topical! I mean, the guy was a sadist.
Lauren: So that brings me to another question, which is: How often are you confronted with, forced to justify the fact that you are dealing with an invisible illness but nobody else can see it?
Sonora: Only in doctors’ offices. And this is a special little treat!
Because when I'm out and about, no one can tell. And I've had to educate my family on a constant basis, repeating the information of: “I'm missing half my vestibular system. I don't need a nap. I'm going to bed until tomorrow.” I've had to repeat that quite a lot. And then, I would say, honestly, it's just doctors who don't understand — because it's not their specialty. So the same way I have to educate my family, I won't ever get fatigued of that because they're my family. But I have no patience for doctors who can't remember that twice.
I walked in with a cane one time and this terrible doctor that I went to asked: “What is that? Why do you have a cane?”
Lauren: Because you need it?
Sonora: I said, “Oh, because I have an acoustic neuroma. It's a brain tumor in my inner ear.” And she said, “Oh, oh, yes, of course. I remember.” She brushed me off. And I was, like, I'm going to treat her as gently as I would my mother, and just explain it all over again. “Oh, oh, but why do you have these problems?” “Oh, because I only have half my vestibular system. So half of my brain is working twice as hard. So it craps out halfway through the day. So napping doesn't regenerate. It would be akin to me telling you to get up at 1am and go to work.” So, you know, it was awful.
Lauren: So you’ve really developed a lot of patience and coping mechanisms, though, for dealing with … idiots!
Sonora: They’re being willfully ignorant. And it tells me that they have fatigue of their own job. They can't tolerate one more thing they can't fix.
Lauren: And do you think that's a failing of the healthcare system?
Sonora: No, it's human.
No one can memorize all that stuff. And also, at this rate, people can't recover from their day. You know, people are overstimulated all day. They go home, they can't recover.
Lauren: And they're looking at screens all day and that doesn't help things either.
Sonora: Yeah. Social media, and … I mean, people are not recovering from their day.
Lauren: And there's also the concept of compassion fatigue, which I know a lot of doctors get treated for. They spend so much time caring for others that they lose sight of themselves as well. So they have to create boundaries and do that balancing act.
Sonora: Limits. They have to put limits on their giving.
Lauren: And you have to also put limits on your giving as well.
Sonora: And what I can take. I remember actually saying to the referral person who submits referrals and refused to submit a manual referral by fax … I said, “Marina, this is your job. This is the only thing you do and you are the only one who can do it.”
Lauren: Which I suppose at the time was probably a little bit empowering for her so maybe it tipped the scales!
Sonora: It was the thing that made her do the thing. And switching doctors isn't always the answer, especially if you're dealing with MediCal because they're all going to be bottom of the barrel.
Lauren: Well, and it's not even that; it's also that continuity of care thing, isn't it? The minute you change doctors, you're going to have to see them for a general physical to get the referral. And you're going to have to go through the process of referrals all over again. And part of that is also reliving the trauma of what you're going through, because you're constantly having to re-tell your story — which can be fatiguing in and of itself. And I know I've mentioned this on previous episodes, but the tip I got for that is: Write it down, and just say, “See attached” whenever you're filling out the form.
Sonora: Yeah, I do that.
Lauren: Which is so smart, because then you don't have to worry about re-telling the story every time. You can let the doctors ask questions once you're in the exam room.
Sonora: And, it helps them save face because every time they see you, they don't remember what's wrong with you. They just remember something they don't remember because they've never heard of it before. And so they can look and say, ‘Oh, right. This is that thing. Okay.’
Lauren: I had an experience yesterday. I was visiting one of my doctors, and she said, “Okay, I barely slept last night. My kid was in the ER. I had a crazy 24 hours. Forgive me. I'm running on coffee today. Can you just catch me up on what we last talked about?” And I was, like, “No problem!” And she also makes the time for me. So I'm like, ‘We're going to be in here for half an hour, 40 minutes talking about this stuff. I've got no problem catching you up again. As long as you're real with me about what you can process right now.’ And that level of honesty is very human, and very relatable.
Sonora: We can work with that.
She's made an actual, genuine attempt to connect. And that's what a good doctor does.
Sonora: Not someone who says, “Why do you have a cane??” “Oh, I had a brain tumor!”
Lauren: Yeah! So, one of the things we mentioned earlier when I introduced you was that you also are the loved one of people with invisible illness. Can you tell us a little bit about what that is in your life? And actually, I just want to honor it by saying this is a really brave thing that you're doing by talking about it.
Sonora: So I have a lot of people in my family who compulsively numb out to escape pain that they cannot handle, through addictive behaviors. There's a lot of addiction in my family. And a lot of pain, to be honest. Let's just go with alcohol, first of all. Alcohol helps some people in my family numb out. It doesn't make me feel less, it makes me feel more. I'm not an alcoholic and that's totally lottery. That's just the genetic lottery.
Lauren: You got the brain tumor instead! Congratulations!
Sonora: Exactly! So I go to a support group called Al-Anon, which is simply short for Alcoholics Anonymous. But it is, in fact, not Alcoholics Anonymous. It's its own support group, started by the wife of the man who started Alcoholics Anonymous. His name is Bill W., and his wife's name was Lois; so people who are in AA and want to maintain their anonymity, but want to see if you need that kind of support and suspect it, will say, “I'm a friend of Bill’s.” And the way we say it is, “I'm a friend of Lois.” The reason we don't hear a lot of this on podcasts or in the media is, it’s part of our program to maintain our anonymity, to not talk about it in public or on media… yes, which I acknowledge I am doing at this moment.
Lauren: We're gonna keep it fairly anonymous in terms of who we're talking about. But not only that, you're also doing it as a service to others who may not even know about the existence of the organization.
Sonora: Well, it has helped me so much.
“You bring your problems to the program and the program to your problems.” That's a great saying. If you need support for invisible illness, shockingly, you can get it out of a 12-step program. And you do not have to be an addict to do that. You can just be profoundly and deeply affected by people who compulsively numb out through alcohol, prescription pills, love addiction, sex addiction, gambling, under-earning, over-earning, workaholism, you name it. However they're numbing out, that absence is very painful. And so a big part of my recovery, for my well being, from my brain tumor, has been through Al-Anon. And it is an anonymous program.
We rented a billboard through the holidays …so we do have some media. ‘If you're affected by someone's problem drinking, you’re welcome here’ … that sort of thing. I know Mom is on TV and it's all about AA; I love that show.
Lauren: And you were on that show!
Sonora:And I was on that show! So they don't actually reveal any kind of steps or slogans or actual ‘stuff’.
Lauren: Go to a meeting if you’re curious.
Sonora: Well, you can Google Al-Anon or any of the 12-step meetings and see what it's about. But it's really when you go and you meet the people and you can see heart-to-heart what the people are like, if it's a good fit.
Lauren: And you're not alone, which is huge.
Sonora: And you're not alone.
And it's not just about some other person's behavior; it's actually about your own. So a big part of how I'm able to cope and move forward is the accountability that I have found from my behavior. At Al-Anon, we don't go for other people. Some people may think they're showing up there to get someone to stop taking prescription pills or abusing alcohol. But actually you end up staying to put the focus on your own life, your own behavior.
Lauren: And your reaction to it because that’s the only thing you can control.
Sonora: That, and how you heal.
We often learn to be the kind of loving parent we need in that moment for ourselves. And what better thing for an invisible illness than to have an imaginary loving parent in your head — which ends up just being you, by the way! Who takes care of you. There are times now that I say to myself, ‘What is the most loving thing I can do right now?’
Lauren: You've really enhanced my ability, just through my relationship with you, my ability to be able to say that to myself, too.
Lauren: And I think it's because it's a huge learning curve. Because we're taught by the media to shame ourselves. And learning self-compassion, for a lot of us — at least I can say, in my experience — it's freaking hard!
Sonora: Well, it's repetitive.
And it's repetitive in the same way that we were wired to shame ourselves. Now we are re-wiring ourselves. But that requires un-wiring the old stuff first.
Lauren: You’ve got to unpack it.
Sonora: Or maybe at the same time, I guess. We're doing it all at the same time.
Lauren: Yeah, I think that sort of process becomes a little more organic, like it happens simultaneously.
Sonora: Yeah. So isn’t that interesting how it all like breeds out from there? You know, we find people who are loving, who we relate to, who see us. You didn't have to have an invisible illness for me to feel validated by you, but you did. And so our friendship is even that much richer. And then we both get into celery juice and AIP diet, and all of these things! Speaking of which, I have some soup in there if you're hungry!
Lauren: I may just have a snack! I know it's AIP-friendly!
Sonora: And you know, we’ve gone on different journeys together.
And I think at the root of it all, it's about our own well-being being in our own hands, as much as it is in our own hands. Taking charge of that in a loving way.
Lauren: And being able to offer the same compassion to others, which is huge because I would probably say … no, I would definitely say … there’s not enough empathy in this world and we can always use some more of it.
Sonora: Well, people are losing their empathy when they lose connection, and they've lost connection through technology. And technology is starting to make up for it by giving us things like WhatsApp. Not only do I have single-sided deafness, but I have a weakness on my left side on my left hand that I've just never recovered from … Oh, by the way before I forget, I want to give a shout-out to the Centre for Neuro Skills in Encino. There are three Centres, but the one I went to was in Encino, and they did a test a series of tests for me — a lot of them actually — to narrow down which parts of my brain were affected. And then they gave me specific exercises that they've come up with to rehabilitate my body and my brain.
Lauren: So it’s like physical therapy for your brain?
Sonora: It's called brain therapy. And if you don't know about it … most doctors don't know about it.
So if you're listening to this, and you've had an acoustic neuroma, they all sort of push into different places in the brain and you're going to need to know what are affected; you don't want to just do random brain games. You really want to know which ones target. For me, it was processing speed and efficiency of processing. I did not have memory issues. I didn't lose my IQ points. I cried the day I learned that those things were safe. So I highly, highly recommend it, and my health insurance covered almost all of that when I went.
And they sent me off with loads of puzzles I to continue to do.
Lauren: There’s actually a puzzle sitting here on the table!
Sonora: And I have several and I love to do them. You don't love to do them at first, but it's how your brain recovers and usually that's not part of the process. You do what's called vestibular therapy, which is physical and it just makes you want to throw up and then go to sleep for 12 hours. But it's necessary because it helps with your vestibular system trying to compensate. But that was really important and I did that after the first surgery. I didn't need it as much after the second because that tumor was so much smaller.
Lauren: Well, I suppose it's like a muscle memory thing because you'd gone through it once before. What I wanted to circle back to as well is that you're still working on getting the bone-anchored hearing device, right?
So the other thing that is unique to our diagnosis is that we have single-sided deafness — SSD for short — and we can't put in hearing aids because there's no hearing to amplify. They’ve removed the entire inner ear.
And for the love of God, I cannot get any doctor to understand that, unless they are an audiologist who specializes in bone-anchored hearing devices. People just don't understand. They’re almost impossible to find. I had to go through the same rigmarole with the referrals not being in a pulldown menu, and going to [Dr. Courtney CJ] Volker, whom I'm seeing tomorrow.
Lauren: This is moving along. Cool!
Sonora: After three months, I finally got it approved! It's of course out of network, but she's at USC. And the first thing you have to do is actually go to an audiologist who specializes in bone-anchored hearing device tests. It's an evaluation, and so what many doctors who are lame will do is continue to send you to audiologists to do hearing tests. We already know I'm deaf on the side; there's nothing in there to test because they've removed the inner ear. So you will bang your head against the wall for a while until people exhaust every audiologist in the system. And then insist on going outside of network to get somebody who will give you the hearing evaluation for bone-anchored hearing device — also called the BAHA, and there's more than one. So what I'm doing tomorrow is, I'm going in to try out the cochlear and there's something else — I forget what it's called, there’s another brand — but ultimately, it's something that is surgically implanted, probably punctured or sliced, depending on which brand you get. And then there's an abutment.
Lauren: That sits outside of your skull?
Lauren: So it would be outside your skin as well? It would be visible?
Sonora: Yeah, it’s a snap. So I have this little gadget that I then snap on. And suddenly, anything I hear on my left side will be transmitted through the bone in my skull to my other ear.
Lauren: So then it would just give you super hearing in your right ear? Or make it feel like that because of the vibrations?
Sonora: It would be as if you had a speaker and microphone, and the microphone is in front of your deaf, useless ear transmitting to the speaker in your right ear. And you can get a hearing aid set that is a speaker and a microphone, which I had for a while. But unfortunately, somebody stole it. It was in the armrest in my car and I valeted the car, and somebody just saw hearing aids and stole them.
Lauren: Are they very valuable?
Lauren: Okay. Yep. I can understand why they would have stolen that.
Sonora: And mine were covered by health insurance at the time.
Lauren: Now do you think that this BAHA will be covered by insurance this time around?
Sonora: Yes. Because MediCal covers 100% when someone requires.
Lauren: That’s really lucky. So I know we sort of went off topic because we were talking about Al-Anon and now we're talking about something else.
Sonora: But I want you to know that they're enmeshed. They really are. When I say I don't have a safety net, I mean, I don't have my nuclear family the way one would if they lived next door or in the same town or even the same state. I have chosen family, and a lot of these are people from Al-Anon; these people are my close friends.
And we don't realize, by the way, how deeply impacted we are by other people's invisible illnesses, including addiction — which, according to the American Medical Association, is a mental illness.
We don't realize how impacted we are until we take a little space from it. And sometimes what that looks like is, stop trying to control them and get them to stop drinking. So cleaning up their messes. Stop begging them to get sober. And then there's a little bit of relief, panic, and then we might begin to learn to recover from the effects. Sometimes when people abuse alcohol, they abuse us; they neglect themselves, they neglect us. And it's really painful. So we've got to go to psychotherapy. We've got to go to sound baths, we've got to start yoga. We've got to learn to walk and admire nature, and journal and pray. And if you don't pray, meditate, or whatever … gratitude list … you’ve got to do something. Now all of a sudden, because you have time.
Lauren: And that's one of the things that you've really prioritized in your life, is your own healing and working on yourself. And taking responsibility for that in a really compassionate way. And, as your friend, it's really beautiful to see you do it. And to then also be able to follow your example.
Sonora: Thank you!
Lauren: Yeah, of course. And I would encourage anyone who has addiction in their family and has loved ones who have addiction problems, to check out Al-Anon, because it's really helped you.
Sonora: It really has. And the reason why we don't go around talking about it a whole lot is because we've decided, as a group, we would prefer to have an air of attraction and not promotion. That’s the expression.
So in general, if you find somebody who has a vibe you want, a serenity that you want, or peace … find out what they're doing and go do that. Try it out.
I never would have really gone to an Al-Anon meeting, except my aunt said, “Oh, you’ll love it. Come with me. I've been coming for 20 years.” And I was, like, "Oh, okay. All right.” And so I went. And it turns out, there's a lot of wisdom there. And there's more gentleness in that room than I had ever experienced. And it had nothing to do with any of my qualifiers, which is what we call people who are compulsively numbing out from very painful situations. And it was a pleasant surprise. And I have also been to meetings that were not a pleasant surprise. And I want you to know you can leave in the middle of it; you won't hurt anybody's feelings. Nobody's keeping track.
Lauren: You travel around to different meetings in different parts of town, because you've got meetings that you like. You can say, “Okay, I'm going to go to the one in Silver Lake today. Or the one in Santa Monica tomorrow, or wherever.”
Sonora: Or if I'm traveling around the country, I’ll check in. It’s so nice to have these people's phone numbers to text or call, or whatever. They're good listeners. And I've not been heard in many parts of my life.
Lauren: So it's really given you a platform to be heard. And to listen to others. And to commune over that.
Sonora: Oh, yeah. If you choose to share, and somebody calls on you, and you share for a couple minutes … no one's allowed to talk. And no one's ever allowed to comment on it after. I had never experienced that before.
Lauren: That’s pretty beautiful. Just that structure.
Sonora: It's stunning. And I've only seen that one other time, at a Quaker church. I went to a Quaker church, because somebody I knew was graduating from a Quaker school. And in their churches, you sit in rows in a square, and they all face each other; there’s nobody in the middle and everybody sits in silence. And if anybody feels moved to say something, they stand up and say it.
Lauren: That's really gorgeous. I remember, actually, when I was looking into high schools …one of the schools that I looked at … didn't end up going to, but looked at very seriously … was a Quaker school in Manhattan. And I loved that. What they did every morning was, you met in the meeting hall, and you sat in that square, all facing each other with nobody in the middle, and you had moments of silence. They were working meditation, in a totally non-religious way, into the education. It was Friends Seminary in Manhattan.
Sonora: Oh, yeah. The Friends School in Baltimore was the one I went to.
Lauren: I think that's such a beautiful practice. We hear about how meditation changes the brain. And I think it's doing that in a way that’s not putting a label of meditation on it necessarily, but giving people the opportunity — particularly during a very tumultuous, hormonally-filled time …
Sonora: And you're face-to-face. If everybody’s sitting in that square, you see everybody. You’re face-to-face and the empathy is unavoidable — and you're just breathing.
Lauren: So you've already started giving some tips. Everyone knows I like to wrap up my interviews with a few Top Three Lists — just for fun!
Sonora: Let’s do it!
Lauren: I want to start with: What are your top three tips for someone who suspects they may have something off, or may be living with invisible illness? What would you say the go-tos would be?
Sonora: I would say, write it down — because when you see a doctor … First of all, don’t be Googling stuff.
Lauren: Don’t go down the rabbit hole!
Sonora: We're going to do it anyway, but don't do it as if that's what you're taking to the doctor.
Write down symptoms for the doctor, even when you can't explain them. Because we often wait until we can explain a symptom — before we take it to a doctor.
So don't do that.
Lauren: Don’t wait too long. Write it down.
Sonora: Honestly, the sooner you rule stuff out, the better. Had I waited any longer, my face would be paralyzed. And there was just no recourse for that. And had I gone sooner, I could have saved my hearing.
Lauren: Well, you'll get your bone-anchored hearing device …
Lauren: Still, home run on that one!
Sonora: That’s true. But maybe I would still have both vestibular systems so they wouldn't have had to take out the inner ear. So instead of scaring yourself into going to the doctor, I would put it right in your calendar … January 1 and August 31, whatever your dates are, figure it out … whatever month has the least amount of birthdays to remember or holidays or whatever … Put it on the calendar; it makes it real. And then whatever symptoms you have, you know you're going to see the doctor on that day.
Lauren: I love that. So journaling really, and being able to provide data.
Sonora: Sticky note. And if you know that the day you see your doctor for a checkup and a check-in is going to be August 31 of every year, then you can go to that date in your phone on your calendar and write in your symptoms.
Lauren: Yeah, that's great. What else would you say, what other tips?
Sonora: In terms of seeing a doctor and getting a diagnosis, do you mean?
Lauren: In terms of tips for anyone who is beginning the journey of invisible illness.
Sonora: Get a core group, and drop people who are toxic. You just don't have the energy. I mean, that's going to happen anyway; I don't even have to tell you that. We conserve our energy and we no longer feel guilt about it.
Lauren: You're the first person who’s said this, and I think it's really important advice … that thing of sticking with the people who work for you and dropping the people who don’t.
Sonora: You have to.
Lauren: To protect yourself.
Sonora :And not only that, but they're benefiting from the relationship, right?
Lauren: Well, the toxic people, yes.
Sonora: Because you're providing something for them. Which, I'm going to be really honest …they can get somewhere else. But if they can get it more easily and without friction from you …
Lauren: And you're going to be the source, and they’ll leech…yeah, set ‘em free.
Sonora: Yeah, set yourself free. You know, really … you have better things to do with your energy.
Lauren: And do you have anything else to offer for a tip?
Sonora: For people who are specifically dealing with recovering from an acoustic neuroma, there’s a pillow in the shape of a donut on Amazon with a bite out of it in a hole in the middle. You will be able to sleep on your surgical site within three to six months if you have this pillow. And the other thing on Amazon is what's called a gel hood. There's a more specific brand name for this, but gel is so much easier on the surgical site. And when you are getting migraines, it's usually because it's swollen. And this goes on for years. You can use one in the shape of an eye mask that actually has a natural curve that is a perfect fit. Or, you can get an entire hood and putting that on changes everything. And also, magnesium at the top of the day really, really helps curb any kind of headaches.
Lauren: But of course, bottom line, check with your doctor if you're going to be adding a supplement like magnesium.
Sonora: Oh yeah, and a good neurologist will say: This is how we treat migraines. I mean, it's the basis of it all. And there are other things out there you can run by your doctor. The other thing I want to promote is massages.
Lauren: Yes, and that was my next question: What are your top three guilty pleasures or indulgences, comfort activities?
Sonora: Massage! And here's the investment … you've got to go to some place that's economical so you can go consistently. And you've got to go repeatedly until you find someone who has the right vibe.
Because somebody who's dedicated to the healing arts will change your life.
You just gotta kiss a lot of frogs before you get there. There are places I can go where it's really fancy and expensive — and I don't have that budget. And then there are places I can go, like in Thai Town, where I can get a massage for $40. But there's also a place around the corner that’s like an in-between. And I’ve found women there that are really good. They actually had all-female masseuses until about a month ago. And I went to the man, and he was not so good.
So I think that's why I really want to promote the concept of finding the thing that makes you physically feel better and spiritually feel better. Because it's all connected.
So my guilty pleasures would be that … and then just going across the street to this little cafe I love, and getting a breakfast sandwich. The idea that someone else is making the meal for me is so luxurious!
Lauren: Yes, isn’t that just wonderful! Just getting served sometimes. I've been a server before, but I never realized until I got sick how amazing getting service is.
Sonora: It’s incredible. There is a service called Postmates. I could shout out to Alexa to order a pizza, and she would order this particular pizza I love that would last for several days and it comes to my front door!
Lauren: Yeah, and you can also do that with a million different delivery services.
Sonora: But to shout it out at a robot and have it show up. And I’d be like, “Thanks, Miguel! Here’s your tip!” I could be in my pajamas all day and not think I had to get dressed to go around the corner to get it. However … I did this crazy, luxurious thing where I realized that I could have Postmates go to the 711 around the corner and bring me this Ben & Jerry’s ice cream called Everything But The... It has all the candy bars in it. And I was, like, ‘Well, I can't just go for one. Let's get two pints of that. And a Reese’s Cup. And don't they have Slurpees?’
Lauren: Go for it!
Sonora: I did! I needed a lot of sucrose that week. So I was, like, ‘Let's do it!’ I don't promote sugar. But at the time, I did.
Lauren: You eat really healthy, but when you want to indulge yourself, that’s part of it, too. It's like, ‘Okay, I can afford to.’ And when my body is telling me that I want some Ben & Jerry’s, I'm going to have my Ben & Jerry’s.
Sonora: Well, yeah, and also your brain requires an extra 1,000 calories a day healing.
Lauren: That's an excuse for eating more!
Sonora: You have to! I can't pack that in with vegetables. Do you know what I mean? It was my only option, Lauren! But I will say this … after my first surgery and a little bit after the second, I craved red grapes, partly because they had tannins. And walnuts.
Lauren: Which is interesting, because if you have a thyroid condition and you're on medication for it, walnuts and grapefruit are the two things that can mess with your meds. So, heads up, guys … careful of those walnuts! But obviously you had cravings for them.
Sonora: I don't like walnuts.
Lauren: I think they taste like cardboard.
Sonora: They always have, like, a film of dirt. But I could not get enough walnuts.
Lauren: Isn’t that funny?
Sonora: Isn't it crazy? And I think it's because of the omega-3s that are good for your brain.
Lauren: Of course. And it’s protein too, so it's helping you rebuild cells in your body.
Sonora: I would crave a steak! (laughs) But I think it was just about those DHA levels!
Lauren: So Sonora, thank you so much. There's so much valuable information that you've shared. And I really hope that if people didn't know about acoustic neuromas, they definitely do now. And then anyone who's listening who may be going through this, we'll link to the Facebook groups that Sonora mentioned. And … find that community, and take those notes, and get that massage, and heal.
Sonora: Thank you so much.
Lauren: I also wanted to mention, before we wrap this up… before I interview people, I always let them know: “Hey, I’ll probably take a couple of candids, and we’ll take a selfie together.” Just because I always like to have a record of these interviews. To give you guys some pictures to throw in with the transcript, so it’s not all a ton of boring text! It’s interesting, because I said to Sonora: “Hey, in case you want to look pretty …!” And what did you say to me?
Sonora: (laughs) This was on WhatsApp so I could just leave a message, and I was, like, “Dear God, please use a headshot! I am so exhausted. I’m just coming home, and I barely made it through the day, and I really don’t have the energy to put on makeup … or a bra. I was really looking forward to sitting down and having our chat … in the scrubs!”
Lauren: And she scrubs up nice, even in her scrubs! With that in mind, the candids that I’ve posted with this episode … we’re doing a twist on the candid … what I love about this anecdote is that it’s an insight into the life of aSpoonie. Sometimes, it’s just too much to put that makeup on. You know, some days it’s: ‘No, it’s not about looking pretty today. We’ll focus on the interview.’ I’ll post a couple of pictures I’ve taken of Sonora and I in our time as friends; we have some cute pictures we’ll post. But also, you’ll see the twist on the candid that I post with Sonora, at the mic, which I think is pretty funny. And I hope you guys will, too!