Claudia Marseille - But you look so normal

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[00:01:12] Hi hi hi and welcome back to Resilience Unravelled. I have a very special guest tonight. Firstly, a guest with the most fantastic name in front of me is Claudia Marseille, which is sort of an Italian name and a French surname.

[00:01:30] But I've spoken to Claudia already and you don't sound very French or Italian so Claudia, where in the world are you today?

[00:01:37] Well, I grew up in Berkeley, California. I live now in Oakland. My parents are both German. My father, they were immigrants to this country.

[00:01:46] My father was a disturbed bipolar psychoanalyst and my mother was a Jewish survivor of the Holocaust.

[00:01:53] Wow.

[00:01:54] And they met in San Francisco after the war. So the French last name actually is way back when on my father's side, they were French Huguenots in study.

[00:02:06] And that's how they slowly migrated into Germany. But for many German generations, my family has been German.

[00:02:13] Yes.

[00:02:14] So how did your parents find themselves to be both in San Francisco?

[00:02:17] Well, my father, he was quite a bit older than my mother and he trained as a psychoanalyst and then moved to Berlin to finish his training and then was in an underground to fight against the Nazis.

[00:02:30] And the Nazis started closing in on him and it got dangerous and he left and came to this country in 1937.

[00:02:37] Right.

[00:02:38] My mother, Jewish and my beloved German Jewish grandmother were both in hiding in Munich during World War Two. And their story is a lot about the good Germans that did help.

[00:02:50] They did have some lucky breaks there.

[00:02:52] But it was very touch and go and a difficult situation. And my mother did not get out until 1947 when she became friends with some American GIs who helped her get an affidavit and come to this country.

[00:03:08] And she just wanted to find a new place to live in the United States. She came to San Francisco and she had a contact of a contact who said, look up Walter Marseille, who was my father, and she contacted him and they met.

[00:03:25] And that's the rest of history on that.

[00:03:29] They later had a very acrimonious divorce and a three year custody battle over me and my brother one night with a child.

[00:03:38] So, although the main thing I want to talk to you about my life is that I grew up with a very severe to profound hearing loss.

[00:03:48] And at age four, I had still not uttered a word. And my parents, because of all of this background, I just told you they were very distracted with being new immigrants to this country and my mother was trying to deal with a disturbed husband.

[00:04:04] They were in denial. Children are by for our talking and it was really the nurses will teach you that says something is wrong here.

[00:04:12] So finally I was tested and they found that I had this very severe hearing loss. And I got fitted with the first primitive analog hearing aids.

[00:04:23] They we take these digital hearing aids that are so available now, so for granted, I can't tell you how different they are from what I grew up with, which was a big clunky analog hearing aid, and it could only accommodate one ear at a time.

[00:04:39] So I had 10 years of speech therapy and lip reading training.

[00:04:45] My parent did decide to mainstream me through the Berkeley public schools and not send me to a school for the deaf. So that was kind of a fork in the road.

[00:04:57] I have growing up with a severe hearing loss had many impacts on my life.

[00:05:03] You know, the main thing was connecting socially. I could not understand the conversations in the school cafeterias that were very noisy.

[00:05:14] I could not understand slumber parties that girls would have the lights would be turned off the whispering. I can't look read in the dark.

[00:05:24] I could not understand the class discussions that were going because the conversations were too much back and forth.

[00:05:32] Neighborhood games and rules of the games were hard for me to follow unless my brother would come up and tell me what was going on.

[00:05:41] I could not understand the conversation in the car and so on.

[00:05:45] And then at one point I also developed what I call my lifelong phone phobia because I really could not hear on the phone.

[00:05:54] And teenagers talk for hours on the phone and socialize that way. And I was left out in that way.

[00:06:02] And then transistor radios kids were listening to their favorite bands and lyrics and all of that and TV.

[00:06:09] So I was on a social level. I was really out of the loop.

[00:06:15] And so although I did well enough academically, I really paid a price in terms of social life.

[00:06:23] Yes. So how did you cope? I mean, I guess part of you missed something but part of you didn't miss what you'd never had.

[00:06:35] I mean, maybe that's too too glib but does does that make sense?

[00:06:39] Well, it I think by third grade I started to realize I was different and that there was something I was really missing that other people were having an easier time and more fun and that there was something really that I was missing.

[00:06:53] And the coping really happened probably after high school.

[00:06:59] I mean, when I just described all these impacts continued through high school.

[00:07:05] And in that when I went to middle school, I started the unhelpful strategy of hiding my hearing loss.

[00:07:13] I had my hair cut short like it is now where my hearing aids are.

[00:07:18] Well, I finally at age 12, I got the first behind the ear hearing aids that were strong enough for me.

[00:07:25] So I suddenly had two hearing aids and could have double volume.

[00:07:31] But because it was hidden and I was in a new big school, I was shy about telling people.

[00:07:38] I didn't know people. I didn't have the nerve to go up to the each teacher for each class and say I need to sit in the front row.

[00:07:46] So I was that that was difficult.

[00:07:50] And it was really only towards the end of high school when I started saying this is not working.

[00:07:56] And I really have to overcome the stigma of hearing loss, which is less much less now as so many people are wearing hearing aids and just tell more people.

[00:08:10] But one of the things I'm also sad about is I went to a large public high school in Berkeley, 4,000 students that may well have been another person with a hearing loss.

[00:08:22] And I just didn't know and the school counsellor had no clue. And so I was very much alone in that.

[00:08:31] So you mentioned stigma of hearing loss. What was the stigma?

[00:08:37] You know, it was something that you just picked up that people thought you were a little bit slow, a little bit stupid, a little bit out of it.

[00:08:48] In college, it was kind of funny as I did tell people more in college and they would say to me, oh, that's what it is.

[00:08:56] I thought you were really stoned.

[00:09:01] Yeah. And as I say, I even know today there are people that resist getting hearing aids because they feel it makes them look old or there is that stigma of not being quite with it.

[00:09:15] But that is much, much less than it used to be.

[00:09:18] Yeah. There's a sort of theory, isn't there, that if you lose access to one of our five senses that the other senses compensate.

[00:09:28] I've interviewed other people with sensory loss and they've often said that is true for them. So how did that work for you?

[00:09:37] Oh, well, I mean, I'm going to continue with my story here if absolutely you're right about that is I developed a very acute visual sense.

[00:09:48] I depend a lot on lip reading. And so for 15 years, I had a portrait photography business and did my own fine art printing and all of that.

[00:10:00] But it was really because I was very attuned to faces in lip reading.

[00:10:04] And then later, when I married my second husband who was very supportive of me going into the arts, which I had always wanted to do, but couldn't afford the high cost of art school.

[00:10:17] So eventually I after photography, I got an MFA in painting. That's my first a third masters.

[00:10:24] I got an MFA in painting. And that is a profession that's compatible with the hearing loss, and that makes a lot of sense.

[00:10:34] But before that, I after college, I married my first husband who was an Englishman, and we lived in London for three years.

[00:10:42] And I got a master's in British archaeology from the Institute of Archaeology and did some archaeological digs also in Israel.

[00:10:51] After that marriage imploded, I came back to Berkeley and realized I needed to do something where I could support myself.

[00:11:00] And so I went to the Graduate School of Public Policy.

[00:11:03] And that was an excellent program, but very challenging because so much this was pre Internet days and pre emailing days.

[00:11:12] So so much of what we needed to do was to get information and that relied on other use of the phone.

[00:11:19] And that was a real challenge for me.

[00:11:23] And I also didn't tell my bosses in my first public policy job that I had a hearing loss, because this is well before the Americans with Disabilities Act that gives you some level of protection on the job.

[00:11:38] And so I was afraid I would jeopardize my job, which was not an unfounded fear.

[00:11:47] And then it was, as I said, I married my second husband who said, you know, you don't need to do this anymore.

[00:11:53] Go into the visual arts, which I had played around with photography since I was 15.

[00:11:59] And so that made a profound difference in my life, landing on something that that really worked.

[00:12:06] So before we get to that chapter, I'm actually describing an immense amount of resilience because from a very early age, you're having to find the energy, the, the wherewithal the skills to be able to either first of all hide the condition or deal with it or deal with people's reactions to it.

[00:12:25] So where did all that resilience come from? Is this only developed or do you think it was inherent from two resilient parents?

[00:12:33] Well, I, yeah, I thought about that. I think a lot of it was two resilient parents.

[00:12:40] My parents, for better or worse, I mean, they did not advocate for me as they could have and should have and help them.

[00:12:48] But they also did have the belief that we could, my brother and I could do whatever we wanted to do that the world was open to us professionally.

[00:12:59] And, you know, that was probably a little unusual in that generation.

[00:13:04] And, you know, they were very European intellectuals.

[00:13:08] I was exposed to a lot of art, music and literature and that that made me very interested.

[00:13:13] I think by temperament, I'm probably a social type of person, even though in my life I'm probably a little more reserved because of my hearing loss.

[00:13:24] But ultimately, I am a social person.

[00:13:27] And I think I've been lucky in that I'm a kind of forward leaning person as opposed to somebody that would withdraw.

[00:13:35] So if I was left out of a situation and that hurt and I felt alone, I would make an effort to go back to that.

[00:13:43] And I would go cultivate a friendship with someone so over here.

[00:13:47] You know, I would reach out.

[00:13:48] Yes.

[00:13:50] And that was my way of coping that felt better than withdrawing and being all alone.

[00:13:57] Yeah, that's very good. Good, good advice for people as well.

[00:14:02] I think you mentioned something there in passing, you talked about your love of music.

[00:14:07] And so I wonder if you could expand on that a little bit because one assumes that someone without full faculty hearing would have a problem with music.

[00:14:16] So tell me more about that.

[00:14:18] Well, and that's very interesting.

[00:14:20] Again, my European parents were very, very interested into classical music.

[00:14:25] And I grew up hearing my father play LP records of different music.

[00:14:31] And I started taking piano lessons at age six.

[00:14:35] And I think one of the things that people misunderstand with hearing loss is that it's not so much a volume issue.

[00:14:43] Hearing aids nowadays can, for most people can correct the volume issue.

[00:14:49] What's really a problem is discriminating speech from background noise.

[00:14:53] And, you know, noisy restaurants are difficult.

[00:14:58] Noisy parties with the music going and it's hard to disagree to sort out the person that you want to talk to from all the background noise.

[00:15:09] And the human brain for normal people is better able to do that.

[00:15:14] That is the big challenge for hearing aid manufacturers that continue to work on different programs to make speech recognition better.

[00:15:24] So back to the piano, the piano is a huge instrument and hearing it was not a problem.

[00:15:31] And the lower notes would be a little muddy and I would compensate by learning the notes, learning the figuring and getting that accurate.

[00:15:41] But I got to a point where I was playing quite well in high school and that was a big solace for me to play.

[00:15:51] But one of my big disappointments was I would have loved to have been a classical music professional, especially an accompanist.

[00:16:00] And in the end of high school, I started accompanying cellists and violinists and I entered orchestra competition and that was hopeless.

[00:16:09] I could not hear myself on the piano above the orchestra noise with the trumpets behind me.

[00:16:16] The cello got muddy, I couldn't hear where they were, I couldn't hear myself above the cello.

[00:16:24] So that's when I realized at the end of high school that I could not become a professional musician.

[00:16:31] So I've played classical piano for pleasure over the years and I've done some forehand music with somebody.

[00:16:39] But I reached a limit as to what I could do with that.

[00:16:44] Yes, and it's often the case isn't it that people, whether they're athletes and they achieve something or they are, for example, athletes who can't quite good enough or have a physical limitation.

[00:16:59] They can spend a lot of their lives regretting that and almost being damaged by that process.

[00:17:08] But it's interesting that you turn to the visual arts in that case.

[00:17:11] So you had a different perspective there, which is great because it's still the arts and it's not very good for you.

[00:17:18] So what type of art did you get involved with?

[00:17:20] You talked about paintings but that covers a huge range of stuff.

[00:17:27] So tell us more about that.

[00:17:28] Well, I remember in seventh grade where you have a few months of art class and I would sit next to my best friend who was drawing beautiful sprees and flowers and her cat.

[00:17:41] And I was scribbling.

[00:17:43] I had the crayons and I was scribbling and scraping and scratching and the teacher was horrified.

[00:17:49] I mean that is not art.

[00:17:51] But later it translated well into my abstract painting.

[00:17:57] So I do abstract art.

[00:18:00] I was influenced by my earlier archeological digs that I went on.

[00:18:07] So a lot of the abstract painting process is layering, putting down more layers, scraping out to what's underneath.

[00:18:15] And yes, and I've had people ask me so does your hearing loss get reflected in your artwork per se?

[00:18:25] And I would say no, not the content of the artwork, which is general abstraction.

[00:18:32] But often I will turn my hearing aids off when I'm painting.

[00:18:35] And so I'm in total silence and then I can really kind of mine inside what wants to come out and be manifested out in the world.

[00:18:49] That's interesting because there is, is it synesthesia or something?

[00:18:53] Is there a condition where people can hear colors or smell sounds and such like?

[00:18:59] And a lot of people who have a warm major sense, sometimes experience that.

[00:19:07] But it sounds like you've escaped that so that's possibly good.

[00:19:11] Well actually I have a perfect pitch and that's something my father discovered when I was six years old he would play some notes on the piano

[00:19:20] and I would say oh you're playing a G E and F sharp and one in ten thousand people have it.

[00:19:27] It's a fluke. I think it has nothing to do with my hearing loss.

[00:19:31] But it was kind of synesthesia. I saw the notes as colors and a color would light up on the rainbow when a G was played that would be a blue.

[00:19:42] And then later over time the colors disappeared and I just knew innately what the note was like.

[00:19:50] And the brain is remarkable for giving us options to be able to deal with things.

[00:19:56] And you strike me as a woman who's not going to be put off by any challenge.

[00:20:01] And so your latest challenge is that you've written a memoir.

[00:20:05] So maybe you can tell us a little bit about your thinking behind writing something like this.

[00:20:11] Well one of the reasons that motivated me to write the memoir was I'm at an age now where I have a number of friends who are getting hearing aids for mild age related hearing loss.

[00:20:22] And they say to me oh now I know what it was like for you growing up and as sympathetic as I am to anyone with hearing loss dealing with hearing aids and that adjustment.

[00:20:33] I know they have no idea what the deep pain and deep impact was when I was growing up.

[00:20:44] And so partly I just kind of wanted to educate people on that.

[00:20:48] And I also in terms of resilience, the other thing that really helped me in addition to my making close personal connections which have served me well.

[00:21:00] But quite frankly the changes in hearing technology has been remarkable.

[00:21:07] Digital hearing aids which can be programmed for individual people's hearing loss with different listening programs.

[00:21:16] Zoom, which is terrific.

[00:21:18] I'm right now able to lip-read you.

[00:21:21] Bluetooth connectivity to my iPhone has ended my lifelong phone phobia.

[00:21:26] I can actually talk on the phone with people with Bluetooth.

[00:21:30] I have Bluetooth on my computer that works.

[00:21:33] I have a little device that sticks into the TV so I can hear again directly into my hearing aids from the TV.

[00:21:44] Closed captioning has made me able to watch TV and movies for the first time in the, you know maybe the last 15 years that I couldn't do unless it was a foreign film with caption.

[00:21:57] Co-clear implants have made a huge difference for many people.

[00:22:01] I have not availed myself of them, but I do know people who have really benefited from that.

[00:22:08] So I don't want to underestimate the impact that that has had in terms of my being able to come out and live a more rich and full life.

[00:22:20] It is fascinating the advances of people who are hearing impaired.

[00:22:27] I'm quite right, so they should have.

[00:22:31] But I'm guessing a lot of these innovations have often been inspired by the military because a lot of people come back from battles and wars and such like.

[00:22:39] I suffer from tinnitus and the only real tinnitus research is going on in the world now because of the American military discovering so many ex-service people coming back with it as well.

[00:22:50] But it's interesting that there has been such a transformation in the way that people can really regain capacity in hearing.

[00:23:02] It's quite inspirational.

[00:23:04] Yes, I mean, you know, thank God for modern technology.

[00:23:09] I mean, we can argue there's other downsides to it, but in my case, I have really, really benefited from that.

[00:23:16] And then the other thing that has also made a difference is, you know, we were talking about stigma earlier is the social cultural changes that were brought out with the Americans Disabilities Act of 1990.

[00:23:29] And in California, the California Deaf Children's Bill of Rights Act of 1994.

[00:23:35] And they both pieces of legislation require some degree of accommodation on the job and in the classroom.

[00:23:43] It's not perfect by any means, but it is helpful.

[00:23:46] And it has gradually increased awareness of people with disabilities and differences.

[00:23:53] And yeah, so that's been a change along with the technology.

[00:24:02] And so what sort of subjects do you cover in the memo?

[00:24:05] What were people expect to read when they pick it up?

[00:24:09] Well, they will see some of the difficulties I went through in school, different adventures I had, different close calls I had because I couldn't hear right and miss reds.

[00:24:23] I had a lot of issues with the police situation, the pain of isolation, the gradual coming out.

[00:24:30] My early relationships, love relationships.

[00:24:34] I interweave the memoir with being at my conversations with my bipolar father over the years.

[00:24:44] Interesting, brilliant man, very colorful.

[00:24:46] I don't know if he himself was depressed, but he certainly made the people around him depressed.

[00:24:53] There was kind of an oppressed appall in the household that my brother and I were offset with dynamic play.

[00:25:01] And then, you know, growing up my first marriage, my current relationship and moving into the visual arts.

[00:25:10] And then some description of some of the changes that I mentioned to you that I think is educational and helpful.

[00:25:20] And I would say that my target audience really is the general market of people who are interested in knowing more about the impact of hearing loss on a life or know of people, you know, their spouse or friend who are struggling with these issues.

[00:25:39] Yes. It sounds very much like a story of hope more than anything else.

[00:25:45] It is a story of hope. I mean, it starts out with a lot of difficulties and then I really come out the other side. And so I want to encourage people that that that is definitely possible and that there is help available out there.

[00:26:02] Yeah. And it's interesting, isn't it? The process of asking for help. That is changed now, isn't it? I mean, possibly when you were much younger, like you said the stigma was not to ask for help because of weakness or whatever reason.

[00:26:18] But now, whatever the situation people are really encouraged to ask for help and not just because it's a right but actually because it's a healthy thing to do, isn't it? It's no longer brave. It's the right thing to do.

[00:26:30] Well, and parents now are much more advocates for their children. And, you know, they go to the school and they work out with the school what's needed and where should they sit and there should be sign language interpreters if necessary or note takers or teachers right on a white board that projected onto the front of the classroom.

[00:26:54] You know, I used to struggle in algebra when the teacher would have his back turned to the class and you know, I couldn't understand the word he said that's no people are just much, much more aware of the accommodations that need to be done.

[00:27:08] So that's a huge change.

[00:27:11] Yeah.

[00:27:13] And it's, and I think as part of the human condition of the modern human condition to see that difference that diversity of having people with all sorts of different issues or accommodations in the workplace. That's how you get different.

[00:27:27] That's how you get innovation is how you build better teams, create better products.

[00:27:32] And it would be a tragedy to have someone with your talent not able to communicate with the world and bring what you have to bear.

[00:27:40] It did, it did make me chuckle though that you were the daughter of a German psychoanalyst. I mean there's a there's an old tradition of German psychoanalysts and their terrible, terrible relationships with children.

[00:27:55] Absolutely. And my mother, you know, she was a nursery school teacher when I was little. She later became a therapist, but she should have figured out that I was not talking and that there's something wrong.

[00:28:08] And it is actually sad because nowadays children are tested for hearing loss at birth in most states. And if there's a hearing loss, they get fitted with hearing aids at six weeks old.

[00:28:21] And, you know, that really stimulates ear nerves at a very early age. And I know that in my case my ear nerves probably atrophied over the years.

[00:28:33] So I through lack of stimulation so I lost hearing during that time.

[00:28:39] So the

[00:28:42] Well, okay, well you better tell us the title of the memoir, Clare Dey, because we don't know yet.

[00:28:46] Yes, it's called But You Look So Normal Lost and Found in a Hearing World.

[00:28:54] And my name is Claudia Marseille, M-A-R-S-E-I-L-L-E, like the French city.

[00:29:02] And you can buy the book on any of your online platforms where you buy books, order it in a local bookstore and libraries.

[00:29:11] And certainly go to my website, which is claudiemarseilleauthor.com and there's an audio book and different links to different sites where you can buy the book.

[00:29:25] And I'm just looking at the Amazon thing on Amazon.co.uk and 27 reviews and all five stars. So that's amazing.

[00:29:33] Yeah, I think it's up to 39 now actually.

[00:29:37] Okay, very impressive. I'm on the UK site so that's probably a little bit behind it.

[00:29:40] Oh, interesting.

[00:29:42] They're all different.

[00:29:44] I need to be respectful of your time tonight. It's an absolutely fascinating talker to you and thank you for spending time with us today.

[00:29:50] So we've been talking to Claudia Marseille and Claudia did spell the name but we'll have links to that in the show notes.

[00:29:57] The book is called But You Look So Normal Lost and Found in a Hearing World and that's on Amazon.

[00:30:03] I'm looking at that in the UK but also amazon.com and all other Amazons all around the world.

[00:30:08] And I'm sure there are other bookshops which are available too.

[00:30:12] Claudia, it's been a joy to talk to you today.

[00:30:14] It's been a delight, Russell. I'm honored to be in your show.

[00:30:17] Thank you so much for your generosity and the service that you provide for us all.

[00:30:22] You're very welcome. You take care.

[00:30:24] Yeah, you too.

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