Ep. 5 Loss and grief: we’re not that different!

A fantastic interview with Deeann Graham from alopecialife.com about living with alopecia and the lasting grief from hair loss. This robust discussion covers many of the similarities between Deeann's grief being diagnosed with Alopecia Areata at age 7 and Vonne's experience in grief as a bereaved parent after the suicide of her daughter in 2005.  Learn about how we really aren't that different after all!

TIMESTAMP

0:00  Intro
0.31  Vonne introduces Deeann and welcomes her to the show.
3:26  Deeann shares her story being diagnosed with alopecia areata at age seven and some of the cultural and social influences that impacted her from childhood and throughout adulthood.
5:20  Vonne addresses the expectation we have to show up in the world a certain way in our bereavement and specifically, as a bereaved parent.
7:00  Hats and bandanas! Deeann describes her journey and the struggle she felt to comfortably present herself in the world as authentically as possible amidst the cultural and social expectations.
11:28  Vonne asks about the lasting emotional impact of her parents succumbing to advice about treatment decades ago with regard to early alopecia diagnosis and the mark it can leave on children today.
13:03  Deeann talks about community, the importance of understanding social influences and communication to make informed decisions about treatment and acceptance.
17:02  Deeann explains too many options for parents and the emotional piece that presents the bigger gap in medical and other resources and support for parents of children living wit alopecia today.
19:10  Vonne shares the similarities in bereavement about the emotional gap in resources and support and asks what parents are struggling with the most today in the alopecia world?
20:16  Deeann describes the struggles but also the emerging cultural and social changes she sees in kids
24:36. Deeann shares the type of work she does and who she works with.
27:09  Deeann explains how people living with alopecia identify today.
28:08. A conversation between Vonne and Deeann about the insufficient resources in their respective worlds of bereavement and alopecia.
31:19 Deeann talks about her resources (book, online course and coaching).
39:05 Vonne explains the impact of her daughter's suicide on her son, the lack of suicide support in Canada for children, and asks Deeann what children struggle with today when their sibling appears different from others.
41:10  Deeann talks about alopecia as a chronic illness, her early childhood and how kids today mostly respond when having a sibling who appears different from their peers.
45:42  Vonne wraps up the episode.

DEANN'S LINKS:

Website:
www.alopecialife.com

Book on Amazon:
Head On, Stories of Alopecia

YouTube:
https://www.youtube.com/channel/UCCXuLPpAxRdz3Ba_7EiAevQ

Facebook:
https://www.facebook.com/groups/2048660141909847

Brought to you by Vonne @ www.vonnesolis.com/

Subscribe to the podcast! Share your favourite episodes! Connect with Vonne on LinkedIn and Facebook.

Transcript

Vonne Solis: 0:00

Welcome to another episode of Grief Talk. Everything you want to know about grief and more. I'm your host, Vonne Solis. As an author, life transformation coach, online instructor and bereaved mom since 2005, I'll be bringing you great content that is informative, inspiring and practical. Whether you have suffered a loss or other adversity, stay tuned and tapped in as I cover a variety of topics to help you get where you want to go on your journey to heal and grow. Today's guest is Deeann Graham, the award winning author of head on stories of alopecia and an alopecia coach, consultant, educator and advocate. She was first diagnosed with alopecia areata when she was seven years old. Deanne published Head On Stories of Alopecia to share stories and photos of people around the world who are living with alopecia in order to provide a broad perspective on the journey of hair loss. Educating communities in order to empower others who have been diagnosed, especially in the beauty and medical industries is an important part of Deeann's outreach. She is also the host of the Alopecia Life podcast, where she continues to educate and share stories to help others realize that they are not alone. Okay, so welcome again to the show Deeann. I am so excited to have you here.

Deeann Graham: 1:25

Thank you so much for having me. I'm excited to be here.

Vonne Solis: 1:29

Excellent. So for my audience, viewers and listeners, as per the introduction, Deeann is an advocate in the alopecia world. And some of you might be wondering, what has alopecia got to do with bereavement and grief? And the answer is one of the main focuses I have for this podcast show is to introduce people to the concept that grief can affect us in many different ways. And I will wager every one of us suffers grief at some point in our life, even if it is for varying time. When we're living with disabilities or losses that aren't necessarily human loss, most of the time, culturally, if not all of the time, we tend to dismiss it as something that we get over. We do not pay any attention to the grief aspect. So it is my absolute honor to have Deeann here with us today and talk a little bit about her world, and what it's like to experience alopecia in terms of herself, her family, the community, the culture. And this is to bring awareness to everyone about not only alopecia and the grief that may be associated with that, but to also help those of us who do live with losses of different types feel a little bit more included in mainstream society. So on that note, I would like to turn it over to you Deeann if you could tell us a little bit about your experience. When you were diagnosed, how it affected your family, your parents, and you over the years. Let's start with that.

Deeann Graham: 3:26

I'd love to thanks again. So I was diagnosed when I was seven years old. And when that happens when you're young, you look to the guidance of your parents or adults in your life. And they were given a certain amount of guidance from other adults, right doctors and teachers and things like that, saying these are the expectations we have or this is what is available to you. And it's interesting when we talk about loss because within the alopecia community hair loss, I mean, you have it's right there in the name right. And so living with that kind of loss is is interesting because there's not a lot of attention given to it and you kind of go okay, this is something that's going on, and it's not as bad as other things. And when you're young, you don't really understand that but as an adult, I did have regrowth. So at seven, I was probably bald for about seven more years, and my hair spontaneously grew back when I was about 14. And then I had significant loss when I had my daughter when I was about 28. And so as an adult, I looked at loss a little bit different, right more mature in a different way. And I thought this is interesting. Why am I so superficial? Why am I not? Why is this hitting me in a similar manner than when just as like when I was seven years old? And so you have to really look deep in yourself and go what? Why is this loss a loss? And then I think the confusion really is around people telling us too. It's outside influence going, Oh, at least it's just this, you don't have cancer, you don't have this, you haven't lost a limb, you haven't and so everybody's inserting their ways of thinking about loss.

Vonne Solis: 5:20

I noticed, one of the things I noticed I was visiting your website, which I think is wonderful. And one of the things that caught me about what you said, is, I think it was in your video introducing your course, which we'll talk about in just a few questions. But it was the expectation of how you were supposed to show up in the world. You and by and by you, you know, you representing the alopecia community, and I can certainly I really am interested in hearing your views on that, because as a bereaved mother, I can tell you, for sure, there is a connection with grief as to the expectation of the way that not only are different communities work, social, you know, volunteer, anything, even, I would dare say even churches, there is an expectation of the way that we're going to show up, and certainly one from families. And you know, what, like, you just finished saying, it's just hair loss, it's not that big a deal. And, but it is a really big deal. And in the case of many, many expectations, one of them is that we are going to be normal, and/or recover from whatever has impacted us as a loss. So I just wondered if you could share a little bit what you experienced. How you felt or I should say, what you felt the expectation was to show up? What did that look like for you?

Deeann Graham: 7:00

Well, it was kind of personal at first, right? I mean, you have to convince yourself to show up in a way that is kind of new to you. It's not. Yeah, you look different. And so looking at yourself is one thing in the mirror, then going, Oh, I'm gonna now present myself to the world in whatever way that looks like. And the expectation was for me to cover it. Right? Very young. Like I was telling you, my parents listened to a teacher who said, Oh, she needs to, you know, cover that up. And they, they were like, Yeah, okay, that makes sense. Right. Let's just get a wig and she'll wear a wig for the rest of her life. And so it was, it was the expectation of what was acceptable at school. We didn't want to draw attention away from the curriculum, or learning or whatever you want to think and whatever it may have been. And that was just one teacher. And so it's interesting how it guided the rest of my life, because when I then lost my hair again, it was the question of, how do I want to show up in the world, right. But it took a long time. It was, I had very, like, just lost you know, tufts of hair sticking out here and there. And I never wanted to shave, my husband kept saying, Do you want to just shave it off? Do you want to just shave it off. And that can be a very empowering experience But it was, it was so connected to that last strand, I'm thinking, Okay, once the last strand goes, then I'll be able to decide what to do. And so it was kind of a protective mechanism, I think in me going, okay, you'll get there when you get there, whenever that will be. And so when I decided to present myself with this new look it, it was covered still. I wore a hat, pretty tacky hat to tell you the truth. It was something that was available, but I learned so much. I thought, okay, cover your ears with a hat. You can't even hear correctly. It's different, right? So you now have this hat that's covering your ear, or you wear something that's just coming out and then your ears stick out around it and it's kind of wonky looking. So there's that and so it was a progression. I think that as I started to put my book together, we'll probably talk about my book later, I was wearing a bandana in the summertime. Just kind of I kind of was matching everything to my outfit. So I had probably, you know, 30 or 40 different colored bandanas and that was my next transition from like wearing a wig to a hat to a bandana. And and then I said, You know what, I need to live in the world in this way. And it was really important for me to show up as that person because I was then going to talk about my book which featured people about you know, living with alopecia. And I thought if I'm not living the life that is authentic to me, then who am I? And so that's kind of how it went. But I didn't also didn't know what was authentic to me until that point when I actually did it. So.

Vonne Solis: 10:00

So what you're just saying is so important Deanne, because you and I met in the business world last year, but I immediately was drawn to you because I see so many similarities. And again, even though we don't talk about them, and probably nobody would sit there and go, Oh, someone with hair loss is suffering, similarly to someone who lost a child. But the truth is, we do suffer the same. We do feel some of the same things. And it is very personal. And you do have to hide who you are in the world. And you do have to make yourself show up. And you do have to struggle with authenticity. And very much like what you just said, you know, writing your book, obviously, as a as a mature adult, and being able to have some introspection and decide, well, when I say decide, reach the point where you can decide how you want to show up, which again, I believe you referred to. It takes, it's a process it can take, it can take years. But I've gone through the very same thing. Because it's a community, we both live in communities that while they're minority communities, and people still do, you know, have child you know, lose children, people still do suffer with alopecia, kids are dying, every day people are being diagnosed with alopecia every day. It is a very similar journey. One of the things I want to move into and this will be a segue into that, is when you were just talking about the physical things that you did, what was happening with your hair and clumps, and, you know, being told to wear a hat, and then getting a variety of bandanas, which is probably really cool. You probably look really cool in bandanas, I just want to say. But if you could go back or you have gone back, and this question is important to help parents today, is as a child, your inner child, what do you think that you have carried or you carried into adult adulthood and have dealt with that impacted you emotionally and maybe even mentally from understanding you were different from people making you literally understand you were different, but not necessarily you would not have had the tools probably at 7, 8, 9, 10. You know, not until adulthood really, to understand authenticity and the choice you have to kind of choose how you want to present in the world. And the reason I want to ask if you want to address any of that, because I never want to get too personal with my guests. But if you do want to address some of the lingering emotional damage other people treating you that way, and parents succumbing to that kind of advice, which may do today in you know, they may do today in certain parts of the world, what did that - what kind of marks does that leave on on children?

Deeann Graham: 13:03

I think it can leave a huge mark. And I know for for me personally it up until you talked about community and up until I met a community and was able to talk about it because I didn't talk about it right. I was very quiet, very silent. People didn't understand around me, my own family who loved me, of course, and you know, did everything that they could just didn't understand. And so when I started meeting other people who understood. When I started writing about my own experience journaling about it, and then putting the book together, I actually put my entire book together and didn't write my story until the very last story because I was so unsure of what I wanted to say. And I would be tearing up and crying when I was writing it. So obviously there's some stuff that lingers, right? I mean, there's there's all sorts of messaging that I actually don't think I took messaging from my parents. It was more about really understanding that outside influences impact everybody and they're all coming from different space and my parents were coming from living in the 70s. This is the way things were done. We didn't talk about it. That was very normal for the time. And I can look at that as an adult and totally accept that. And and then even the kids who teased me at school, I as an adult, I look at that and say okay, you know, this is the influence. This is why this was happening and and I take that into what I do as a coach when I talk to families. I'm, I'm like we didn't talk about it Guess what? Opening up conversations and sharing about what's happening with your child can I'm not gonna say it's going to get rid of the bullies because they exist but it does open up enough dialogue that kids feel free to talk about it. When back when I was young that wasn't the case. So, yeah, I do think there's lingering messaging that that does stick. But I do feel also that yeah, like I said, it's just you, I moved through that process, and there's nothing of that left. So I'm just really happy about that.

Vonne Solis: 15:16

Absolutely. And it makes you an expert in what you teach, and what the resources that you have to share. And I am going to ask you about that related to this next question . Which is, I know that you say on your website that today 40 odd decades later four decades, not 40. Sorry, Deeann. Oops

Deeann Graham: 15:40

I'm not that old!

Vonne Solis: 15:41

I know, either am I! Okay, four decades later, some of the same, you know, stuff, is still missing. And I know you were saying, you know, some of the things that and I want to get into a little bit about exactly how you can help parents, and, you know, their children diagnosed with alopecia, both individuals as adults and children diagnosed. And so you said they, you say that the parents are still struggling some of the same things, there's gaps that are still missing, missing today that were when you were a child. And I know and one of the things that caught me, because I'm telling you, it is exactly the same in my world. It's the medical support, and with no disrespect to anybody in the medical community trying to help, there is a huge gap in how they understand my world as a you know, bereaved parent. And I know that you say that. And the other thing I note that you say, again, very similar is parental guilt. You know, guilt. There's some regrets. There's too many options. I wasn't sure that I understood what you meant by too many options. So I was just wondering if you could explain why you think there is a gap still with medical professionals, resources, and this parental, too many options for parents.

Deeann Graham: 17:02

Right. So when I say too many options I, I'm talking about everything that's offered, right? You go, oh, well, you should take this biotin. Well, you could do this, you could do that. And we'll we'll test for this and that. But it won't really be effective. They do some very baseline bloodwork. And sometimes they don't even offer bloodwork. And when you go to the doctor, which is interesting, because I do believe that you should look at inflammatory markers, you should look at vitamin D and iron, obviously, because you could have some underlying things that are easy to supplement. And then you know, perhaps you might have regrowth, right, or it might just encourage some hair growth. But the bigger piece of it, the gap is with the emotional piece of it. When they're telling parents at appointments, oh, your child has stress and they're looking at their, you know, 15 year old, 15 month old child and you're like, what kind of stress because we interpret stress to be something that we can't handle in our lives, right? We go, oh, this is happening, because I just can't handle this kind of XYZ, whatever it might be. And there is there are things that happen. And so a lot of this rabbit hole that people go down is what's the trigger? Right? We each have a genetic component that plays into autoimmunity. And in this case, it's hair loss. But what is the trigger? And sometimes you might discover that the trigger is trauma is, you know, a vaccine, is getting a virus, is getting dental work. I mean, the the amount of things that could have triggered this are huge, right? And, and there's so many ideas that people have, and they go to their doctor, and they say, I think this caused this and then doctors like oh, that's absolutely not that's impossible, right? And so that's kind of where I go with the overwhelm piece of it. Because you do. You get into that. And you start saying how can I fix what this is? There's a genetic component. So now I'm blaming myself as a parent, and then you're in it. So it's just kind of sends you into a spiral. And I think that's something that everybody can understand.

Vonne Solis: 19:10

I totally know the rabbit hole. And again, similarily. And I'm and the reason I'm interjecting with you know, my world is for those listeners and viewers out there to really understand and the similarities that a devastation of a diagnosis for a parent can be equal to understanding first learning your child has died, or even another loved one. There is the shock there's, the trauma, there's the there's the absolute guilt that can last a lifetime time if you're looking for enough reasons why something happened. It can definitely last a lifetime. So, again, I, what do you think that parents are most struggling then with today because I I know I am also going to ask you let me let me do this as a two fold question. What has changed today for parents? And then, in terms of what you just finished saying, are there other struggles that parents are struggling are dealing with today?

Deeann Graham: 20:16

Yes, so let's do the struggles first. I think with anything, we're taking baggage from our life as being young people and bringing them into parenting a lot of the time, and we're like, oh, my child's gonna have a hard time at the beginning of kindergarten, because they don't have any hair and all their peers will have hair or they're gonna have trouble in junior high. That's a big one, right? Oh, my gosh, junior high, which is a really difficult age, right. So we have assumptions about how our child is going to be treated by others. And we get, we just go into future tripping, right, we just go, oh, my gosh, this is going to happen, this is going to happen. And because it happened to us, as parents and so we assume that these things are naturally going to happen for our children. And that's, that's not the way the world is right now. Our our children actually are being raised in ways that are so open to diversity. So accepting of things when we give them the chance to right? And so what was true back when, when we were young is is not true today. So I think that a lot of that is happening. And I coach people around families around school, that's probably my biggest module also in my course, because it's such a big one, right? How to talk about it at school and how to introduce it. So that's kind of the big piece of that. I forgot the first part of the question.

Vonne Solis: 21:43

No, that was it. We were just sort of talking about struggle. But I was just I had made some notes here. And so actually, why don't we get into a little bit about their I know you, I'm looking at my notes, because I can't always remember everything, but your common issues were, you know, how to talk to the child who's been diagnosed. How to introduce alopecia at school. Connection with others. And I know there was the one here and I love this one, how to deal with unsolicited advice from family and strangers. So some of those, why don't you I think what would be really helpful is this. And we'll move to your teaching now in your own resources, your book, your solutions. How would a parent talk to their child today that would be different from how you were treated as a child.

Deeann Graham: 22:36

I love what one parent Mimi is one of my go to parents, she was featured in my book with her son, Andre, and she talks about giving children agency and really giving talking about body autonomy. And she said she wished she would have done a different. Her son was diagnosed, I think when he was around seven. And that's when I was diagnosed too, so it was really interesting to hear that and he's now 17. And so she said going in and she's also a medical practitioner, by the way, she's a nurse practitioner. So she's in the medical world. She knew what she was seeing, but she wanted confirmation. But then she said, Okay, we went into these appointments and the doctors like, we're going to do this and then she would look at her son and say, How does that sound to you? Right? And and that never would have happened in an appointment that they would have been like, oh, the doctor says to do this, and that's what we're gonna do. Right? So that is a real difference where this just has changed so much and but I still see it not happening. I just was coaching a parent yesterday and said, Go into that appointment, ask for what you want. They're probably not going to volunteer to give it to you so and I don't want to be you know, totally a downer for people when they go to appointments but I'm like you've been waiting five months for this appointment. Ask for what you want. Know what blood tests you want. Know for to check these things out. And I'm not a medical professional. So I don't really speak to specific things like that. But I do encourage them to really be bold and ask for what they want. So I think that is a difference that we're hoping to you know the more we talk about it the the better we can all become when we go into an appointment that especially when we've been waiting months to get in.

Vonne Solis: 24:24

No kidding. So how do you guide guide parents? And do you actually work with older individuals who have been diagnosed with alopecia or mostly parents?

Deeann Graham: 24:36

I do work work with women mostly. But it, I really am drawn to working with families more than anything that I just know that's where I think I'm meant to be. And it's not because I have a child living with alopecia but I was a child and so I'm giving them kind of a different perspective on on what they can. They want to hear from me. When I did my beta course, they're like, We want to know how it affected you, we want to know what you think. And I kept thinking, wow, okay, that's really interesting. I kind of thought it, let's gear it towards your own child, but they are so in the dark about it, that they, they just want to know what maybe my perspective was. And I have a base of knowledge from so many different people just from doing the book, and then interviewing people on the podcast, it just broadens my perspective to knowing what other people feel, and express to me. So I think that that's really helpful too.

Vonne Solis: 25:33

So I'm just you know, from the outside, I can tell you, you sound like a living legend. And seriously, and it is the person that has acquired some longevity with an experience that has wisdom to share with others. So we are the teachers of what we need to be the teachers of, you know, unfortunately, maybe our experiences aren't great and aren't welcoming, and maybe are not experienced by the masses. But for those that are suddenly thrown into a world that is sudden, and certainly not expected, you know, makes identifies you as different in the mainstream, we need to we need to have voices in these in these areas. And, again, I really feel that the lack of empowerment, so a lot of the work I do is you know about empowering grievers to make decisions. So when you speak about parents in the alopecia world waiting five months or longer for an appointment, and you know, it can be scary to ask your medical professional for something specific or challenge them on something. And so I think that's really important that you're working in that area. I was going to ask you about community for alopecia sufferers. I don't know I don't want to really call you sufferers, but maybe you can explain that term as well. Like what what are people or how do you identify as someone living with alopecia?

Deeann Graham: 27:09

That is an that is up for debate, right? Because that is a big question. A lot of people call themselves Alopecians. And I, I'm not super keen on that term. And but that's okay. It's no big deal. The the suffering piece of it, I definitely, it's a, it's cringe-worthy a little bit because you go, are we all suffering? No, absolutely not. I mean, I have a girlfriend who has I think she was 17 months old when she was diagnosed and she's like, why do people get saying we're suffering? And that's in the news, right? And they're like, oh, so and so suffering from alopecia. Most of the time, that's about mindset, right? I mean, are we suffering? Or are we thriving? Are we living our lives the way we're supposed to be? Are we working through it? Are we figuring it out? But definitely, I'm, I'm so glad that you asked the question, Vonne, because suffering doesn't have to be the reality of what's going on for sure.

Vonne Solis: 28:08

Exactly. And so I would ask you, then, in terms of your own resources, and sort of linking that to community, what is your what is community support like? Certainly you're in the States, and I certainly, I'm in Canada, I have no idea what it's like in Canada. And there are many people that remain unaware of you know you live with a condition that is like, again, bereavement. Unless it happens to you, you're not really aware of it. That is a fact. That is a fact. I know in my world, there is not enough resources and community support in terms of support groups, the right information on resource materials. For example, a big missing piece in my world is trauma related to grief. I'm sure there can be some trauma related to alopecia as well. But moving into the community side of things, which your work is, is I'm thinking a big part of and I want to hear about that next, everything that you do and resources you offer, as the community is, is there enough support or resources in communities? Can people easily find them in their various states when they're looking for help on alopecia? Like, what's that like?

Deeann Graham: 29:26

No, I do think that there's great resources, but I don't think it's easily accessible even by googling. So you, a lot of people will just put Alopecia Areata and it might come up with the one main nonprofit, and that's been around for probably almost as long as I've had alopecia. But I didn't know about it until about 10 years ago. And so which, you know, the internet really wasn't happening for for a ton of time when I was of course young. But I think that it really starts at the top right and the top, meaning you just got diagnosed at your doctor's office. Now what happens? They just give you an injection or a cream or whatever. And then they say, come back in 45 days. They don't say, Hey, these are great resources for you. I'm gonna give you the name of two nonprofits, one for the children's alopecia project, which is all over the world, but mostly here in the United States. And there's I think there's one group in Mexico, but they're really driven by parent volunteers for each group in these different states. And, and then there's the national Alopecia Areata Foundation. And then, of course, I want them to tell them about me, right? Because I think I'm a good resource too.

Vonne Solis: 30:50

You are a good resource. So let's let's Deeann is a wonderful resource. And I have been to your website, and I was so impressed. Okay, so let's talk about your resources. Deeann. And, I know you have a book, I know you have a podcast, I know you have a course. You've taught it live, and I believe it is going online at or if it isn't online already. How would you like, you talk about those in any order to help people.

Deeann Graham: 31:19

Yeah, so I'll talk about the book first, because it was my real introduction to talking to other people about alopecia. I really hadn't done that. And I went to my first conference. A national Alopecia Areata conference in Missouri. It was the first one I ever attended. And I said, Well, you know, I can write about my own story. But that's about two pages long. And then I thought everybody else has stories to tell, too. And let's go start to meet some of these people. So it took me it took me several years to really, I don't just have people trust me. It's not like I'm not trustworthy. But it was work, right? I mean, you're communicating with people, I didn't want to go on Facebook. And for a time, I was like, I don't want to go on this platform. And that actually has been the most resourceful platform for me over the years. So I'm glad I actually jumped in on that. But I started to reach out to people at the conference and say, Hey, this is who I am, I'd like to do something like this. Are you interested? And of course, the more stories you hear the, the more interesting stories there are that you find. And then other people were like, oh, you should interview so and so. You should have that. But it was kind of a - the book itself is stories, but they're also black and white photos. So there's photographers involved, and they had to have releases for stories and photographs. And then but I would say I, the overwhelming support from people who contributed stories and photos was amazing. It, it was almost like it was meant to happen when it did. No matter how long I thought about it, no matter how long I worked on it beforehand. When I actually started doing the actual work, it was from like October to May, and everything was done within those few months. And so I I think that that, that for me came from this need to have another resource or a resource because I wasn't finding any. There were, you know, there were books about personal stories, one person's story about alopecia or living bald in in a world of hairy people, which was great, but I wanted to do the range of hair loss, which is all you know, patchy hair loss, complete scalp loss, complete body loss. And I wanted to also feature women, men and children from all over the world. So that was a little bit of a project. And I was really happy with the results. And I think people who can - I know that people who contributed their stories are just happy that it's out there. That they can share and help other people along the journey. Because that's what it's all about. If you can help the next person down the road. That's what that's the best thing you can do. So that's where it started for me.

Vonne Solis: 34:04

So Deeann, I just want to interject really quickly here for again, our audience, listeners and viewers. I'll put a link with this podcast to your all of your resources, including your book, but can you just give a shout out what what is the name of your book again, Deeann?

Deeann Graham: 34:18

So my book is titled Head On - Stories of Alopecia. And my husband actually helped with the name. He actually helps with all the names that we're kind of randomly, we were driving on the freeway, and he's like, What about head on because we were just throwing it around. And I also want to do a shout out for my sister. My older sister Kristen, who actually set the entire book up and made it look the way it does. So we worked I flew her up from California and we worked in our pajamas at the dining room table, all that stuff and then on the phone, fixing little typos and stuff when she went home. So it was kind of a definitely a collaborative effort overall.

Vonne Solis: 35:00

Yeah. And is that available on Amazon? And where else would it be available?

Deeann Graham: 35:04

Yep. It's also definitely on Amazon, and then through my website headonpublishing.com. And also, at my main website, alopecialife.com. You can purchase it off there, too.

Vonne Solis: 35:15

Excellent. So do you want to tell us a little bit about your course?

Deeann Graham: 35:19

Yeah. So this has been a long time coming. I didn't really know this is where I would be with this. I thought, Oh, I'll do maybe a membership, or I'll just keep coaching. And I really wanted something that could reach a lot of people in their own time. So I thought, okay, let's just do an online course, for families. And so this is specifically for parents or caregivers who are taking care of all the needs of their child and with alopecia, and are just really lost that, you know, if you've had alopecia for, you know, 20 years, and you this isn't something for you. Or if you're, you're totally cool with how you're living with alopecia and you've figured it all out, this isn't for you. But the and I also don't talk about, I kind of think it's important to say what you don't do in your course, and I don't give medical advice, I don't talk about treatments. I, I stay away from that because I'm not a medical provider. And I'm not authorized to do that. But I also think you can really get caught in the weeds with those conversations. And so the course itself is really, it's almost like it starts from your diagnosis, and then all the questions that come in as parents. What about this? Well, what about that? Then my kids asked me about that. What about the siblings? What about? What do I say to grandma when she wants to offer a wig for the 10th time, you know, and my child doesn't want to wear a wig. And so there's all these conversations that I've had with people over the years, and I insert them in the course to help people understand that they're not alone. That's the biggest thing is, people do not need to feel alone in this. Because large amounts of people are you know, I mean, we're talking, I think right now, the numbers are 2% of the population, which is about 152 million people around the world. So, but we always think we're alone.

Vonne Solis: 37:10

Oh, I know. And again, it's just it's, it's, again, your reasons for writing your book, your reason for doing your course, the reason you're doing your podcast, I mean, it's again, it's just so similar to my own journey, because and and I also wanted to just comment about, you know, people maybe not being overly responsive, or, you know, like, where are my people? Because these are subjects like when it becomes so personal like that and we're so conditioned to be wired only for our wins. Our successes. Nobody wants to hear about problems unless they're going through them too. And as I've written about fairly extensively, you know, when we can't identify with the pain, we really don't want to hear about it. Which means there's a huge gap in our level of an ability to demonstrate empathy and compassion for each other. It's interesting Deeann, and I'm sure you'll agree, the moment that you are diagnosed with something or you've lived with something and evolved into an adult, you have empathy and compassion, you know. But before that, you know, it not maybe for your kids, and other close loved ones, but it is a hard one emotion, both of them to actually be able to experience, display and really, truly feel. And I know that from before and after my own daughter's death. So I think your work is amazing. I am going to put links to everything. And what is the name of your podcast so people can tune into that as well.

Deeann Graham: 38:57

It's called alopecia life.

Vonne Solis: 39:00

Okay. Perfect.

Deeann Graham: 39:02

Yeah. And I have a link to that on the website, too. So.

Vonne Solis: 39:05

Yeah, you have a lot of resources. And I know we're our time is coming to an end for this episode. But I did want to ask you one last thing. I was going to ask a little earlier and I got a little bit sidetracked. But another important component to this and again, another similarity in our worlds is siblings. And so the impact of one child in the family being diagnosed with something that makes them quote, different. You know, in your world, it's alopecia and now all of a sudden my brother or sister doesn't have you know, hair. And in my world, it's Oh, my brother or sister has died. And my world it's not so visible for it's not a physical difference and in your world, I suppose it could be covered up. The difference could be covered up as well with you know, like, like you say, wigs, hats and so on, but I'm just wondering if there is a stigma attached to alopecia today? I know we talked, at the beginning of this, you spoke a little bit about how our world has changed. And kids are being presented with more autonomy and agency, which is absolutely wonderful. But having said that, I know when my daughter died by suicide in 2005, my son was 13. And he essentially has lived a double life to this day. Meaning he doesn't talk about that. He hid all of that from school. There was no support for him. Absolutely none. He was different. So in that regard, we're very, we're very, our worlds are similar. So I was just wondering, before we wrap this up, if do you have any advice for parents with children, and if any of their other children who are not, you know, afflicted, are having struggles with this? If the one child might be getting more attention because they're different and it makes the other children feel less? Anything? I don't know if that's the case, but anything you can maybe share tips to help parents on this subject that'd be awesome.

Deeann Graham: 41:10

Yeah, I think that's a great question. I think that when we are dealing with chronic illness, which this is chronic illness, we don't call it a disease. I mean, I know a lot of people prefer not to call it a disease. We call it a condition, but it is chronic, right? It's going to be with us up and down. I mean, you could have complete regrowth, but it still kind of maybe laying dormant. But with the siblings, it's really interesting, because a lot of people will not talk to the child with alopecia. They'll go to the the older brother or sister and say, Hey, what's going on with your sister or brother, you know, why are they bald, right. And so now they have to be a voice piece for their sibling. And that may be a role that they willingly take on, or it may be one that they don't want, right. And so they should be, there should definitely be a conversation around it at home at some point, because it is important to say, you know, you are your own person, you shouldn't have to say, speak up, whatever, unless you want to. And a lot of, I do notice a lot of older siblings are just raring to go. They're they're like, I'm gonna take care of that person who did said this or whatever. And that's kind of a normal reaction for some older siblings. But sometimes they're just like, I don't want to talk about this anymore. I'm tired of it. Why are people asking me. And I know in my particular family, my younger sister developed asthma very soon after I had, you know, I'm also a type one diabetic so from the age of two, so I was already given insulin injections, and then I lost my hair, then my younger sister developed, developed asthma. And she she was in crisis a lot when we were young, you know, having a child who can't breathe. That's, that's a whole other world. And so the attention automatically goes to that because you need to take care of this these lungs, right. And so I think that probably in my situation, my family situation, my older sister was probably kind of feeling a little bit lost. And we don't really talk a lot about it. But it when I was talking to my mom the other day, because I was actually working on that module about setting boundaries with our kids, because we don't want to give them everything they they have just because they don't have hair, right. I mean, it's there's that piece, and then we talked about the sibling piece. And she said, you know, yeah, it really was - the attention had to go to Andrea, my younger sister. And so I think that we didn't have the normal roles of how chronic illness hits, kind of were lost a little bit for for me, but I don't regret that at all. I think that it just was the way it was and you just kind of deal with it. But I do think that there needs to be a conversation with siblings, for sure. And, you know, in your son's case, I, I mean, I always recommend support, right? If there is support available out there. And then, you know, he's 13. Does he even want to do that? there's he doesn't want to talk about it. I mean, he's broken, too, for sure. And there's this, you know, unwillingness to talk but there's also a freedom in knowing that other people going to a bereavement group, a support group for teenagers can be really helpful. I know my own mother in law lost her dad when she was quite young and something like that would have been really helpful. She talked about that as as an adult. So.

Vonne Solis: 44:34

Yeah, sadly, they don't have that in Canada, where my daughter's death was a suicide and there's like basically zero support for kids. And that stands today, which goes back to our opening dialogue about you know, lack of awareness, a lack of understanding a lack of resources and every voice counts. So and on that note, every voice counts, I am going to wrap this up, because while this was not a long, long conversation, it could have been. But it is enough to be the eye opener it's meant to be. And I really want to thank you again for sharing your experiences and giving us all a glimpse into your world. And the resources I do share in the in the description for this podcast, can absolutely direct people who are experiencing alopecia or know someone that's experienced it, experiencing alopecia, to your site and, and book and so on. And I know that they'll they'll find it very, very helpful. So thank you so much again, Deeann, for being a guest on my show. It was awesome.

Deeann Graham: 45:50

Thank you Vonne. I really appreciate you having me once again.

Vonne Solis: 45:54

All right, talk soon.