Episode Transcript
[00:00:00] Speaker A: This show is not a substitute for professional counseling and no relationship is created between the show hosts or guests and any listener. If you feel you are in need of professional mental health and are a UA student, we encourage you to contact the UA Counseling Center at 348-3863. If you are not a UA student, please contact your respective county's cris service hotline or their local mental health agency or insurance company. If it is an emergency situation, please call 911 or go to your nearest emergency room.
[00:00:42] Speaker B: Again, for Brain Matters, the official radio show of the UA Counseling Center, we are broadcasting from the campus of the University of Alabama. Good evening. My name is Dr. B. J. Gunther, and I'm the host of the show, along with my colleague and producer, Catherine Howell. And in case you don't know, this show is about mental and physical health issues that affect college students and in particular UA students. So you can listen to us each Tuesday night at 06:00 p.m. On 90.7 FM, or you can listen online at wvuafm ua.edu. You can also download the machine radio app and type in wvuafm 90.7. If you have any show ideas for our upcoming shows, please email those to me at brainmattersradio at wvuafm ua.edu. I'll try to consider your show topic ideas and I'll try to remember to give this address out periodically throughout the show tonight because I think we only have one more show for this semester and then we'll start in with spring semester, which I haven't even planned that out yet. So if you do have ideas, they would be greatly appreciated. And as I mentioned all the time, it's okay if they're just like very simple what you think, simple ideas or maybe even something we've touched on before, like depression or stress or anxiety. Panic attacks. I love talking about panic attacks and anything like that. Though there's always trends that are changing, especially with college mental health, and I would love to do a show that somebody's given suggestions on. So it's Brainmattersradio at wvuafm ua.edu. Tonight's topic. I think it's a timely topic and I'm not sure if I've done anything this specific this time of year, I've just not timed it out right or something. But we're going to talk tonight about coping with grief during the holidays. Because I know it's the holiday season, a time that's supposed to be joyful and festive. But for some people, this time of year can be very difficult. Especially if you or someone you care about are struggling with the loss of a loved one. And if you're feeling any grief during the holiday season, know that you're not alone. Because it can be, like I said, particularly difficult to deal with grief because of holiday traditions. And they may serve as reminders of what's been lost. And the happiness of others can make people who are grieving feel very alone and isolated. And there's ways, though, to cope with holiday grief in order to feel a little more supported throughout the season. And I hope our guest tonight can give us some help and some ideas and talk about something that's happened to her personally. Hopefully she will. Kelly Cervantes. And I hope I pronounced your name correctly. I didn't even ask you.
[00:03:33] Speaker C: Kelly.
[00:03:34] Speaker B: Kelly Cervantes. Kelly is an award winning writer, speaker and advocate, best known for her blog Inch Stones sorry. Where she shares the stress, love and the joy that came from parenting her medically complex daughter, Adelaide. Since Adelaide's passing in 2019, kelly has continued to write candidly about her arduous and at times contradictory grief journey. Wow, that's a mouthful. Kelly, thank you for being on the show.
[00:04:03] Speaker C: Thank you for having me.
[00:04:04] Speaker B: That is a long introduction about you, but you personally tell the listeners a little more about yourself, where you're from, what your kind of credentials are, how many books you've written, because we want to talk about the book you've written and why you're interested in this topic. I kind of gave a hint to that.
[00:04:23] Speaker C: Yeah, absolutely. So I was actually born in St. Louis, raised in Omaha. I went to college in Boston, and then I moved to New York City. I thought I was going to be an actress and I was for five did, you know, TV commercials, print, film stuff. And then I met my husband and his career was going a little bit better than mine and so I was ready to leave, I was ready to do something different. And so I had this job just sort of placed in my lap to run events for one of Tom Calicchio's restaurants in New York City. So I did that for several years and then my husband's career kept growing and kept building on Broadway and it all sort of came to a head in one week. It was actually my last day working for Tom Calicchio's restaurant group. The next week I was supposed to start as the sales director for a different restaurant group and Miguel calls me and tells me that he has booked the role of Alexander Hamilton in the musical Hamilton. He's going to do it for a month in New York and then we're going to move to Chicago, where he is going to open the production in Chicago, which was all incredibly exciting news, but my life literally turned on its head overnight. Because what had happened earlier that week was that our daughter Adelaide had been diagnosed with epilepsy. Now people can go and live completely outwardly typical lives with an epilepsy diagnosis. My daughter was not one of those people. She was severely impacted by her seizures. We would later find out that epilepsy is a diagnosis in insurance terms only. It was always a symptom of something else. And for my daughter, it was a symptom of a neurodegenerative disorder, a genetic disorder.
She passed away five days shy of her fourth birthday. And I left my career to take care of her.
So there was a lot of grief involved in giving up my career, in grieving my daughter's life and the life I envisioned that we were going to have as a family while she was still alive.
[00:06:49] Speaker B: And you have other children too. You mentioned to me before we started the show, you have an eleven year old and a five year old. So first of all, how old was Adelaide when she was diagnosed?
[00:07:00] Speaker C: Adelaide was seven months when she was diagnosed with epilepsy. And then my son was almost four when she was diagnosed. He is now eleven.
And then my daughter, who is almost five, we actually adopted her. So she came to our life about two years ago now. The adoption was just finalized in but so she came to us about two years after Adelaide passed away and has brought sunshine and rainbows and unicorns into our home when we so desperately needed them. But that is like that's a whole nother show. That is a whole other show.
[00:07:43] Speaker B: Okay, here's the thing. Did you know anything about epilepsy? Did you have any idea what was going on?
I have had a few students and patient clients who have had epilepsy, but it might be petty mall. I only know about petty mall and grandma and very minor. So that was really not anything that was in the forefront of the session. I don't feel like I know a whole lot about epilepsy.
[00:08:15] Speaker C: So one in 26 will be diagnosed in their lifetime. It is of the however many millions of people who are diagnosed in the United States, two thirds are able to get control with medication, one third are not, which means they are having active seizures and on medications and trying to find answers.
The other interesting piece in terms of mental health is that anxiety and depression is a major comorbidity with epilepsy.
[00:08:46] Speaker B: Oh yeah.
[00:08:46] Speaker C: So you may see it go for people who have anxiety and depression are going to be more likely to develop epilepsy and vice versa. So there's a major correlation there that we just know so little about the brain and how it works that there are more questions than answers across the board.
I knew nothing about epilepsy. She would go on to be diagnosed with infantile spasms, which is a particularly devastating form of pediatric epilepsy, which has even worse outcomes.
[00:09:21] Speaker B: From the get go. What did the doctors give you regarding a prognosis? Because I know in some of the bites that I read from your book, one of the things you mentioned is you started grieving for her even before she passed away.
[00:09:40] Speaker C: Long before she passed away. I remember her first birthday. I was grieving because she wasn't meeting milestones. So Adelaide was non mobile, non verbal, and while I don't know for certain where she was intellectually, physically, she never developed past a three month old. I do believe that she got a little further intellectually, but there was no way for us to really know for sure where she was.
So absolutely. I grieved that she was never going to say, Mommy or I love you. I grieved that she could never take a dance class, that my husband was never going to walk her down the aisle. We weren't going to go prom dress shopping. All of the things that you traditionally imagine when you find out that you're having a daughter, I had to grieve all of that.
[00:10:30] Speaker B: Did you have any friends who could understand what you were going through?
No matter who has passed away with my students, whether it's a parent or a sibling or a grandparent, one of the first things I ask is, do you have any friends who can relate to you? Because I don't know how to say this. I'm blunt, so I'll just say it. People try to say things, they try to comfort you, and I think they step on sometimes your toes because they just don't know what to say. And I think sometimes it ends up doing more damage rather than just sitting and listening.
[00:11:10] Speaker C: Yes, 100%. So I, at the time, did not have friends who could really understand.
I would go on and make friends. I would find communities online, on social media, but in person, too, through local nonprofit organizations or just connecting in different social groups. I was very fortunate that most of Adelaide's life was spent in Chicago. So this major metropolitan area where it was easy to connect with other people. So I did, in time, develop these connections with other families. And not just for me, but for my son. So that he could see other children who had siblings that were disabled or who had seizures, who understood what it was like to not know who was going to pick you up from school or if you were going to have to go home with a friend because your mom and your sister had gone to the hospital.
Finding that community was incredibly important because you're right. People don't know what to say. And more often than not, all you want is just to have someone who will sit with you and listen and hold your hand and pass you a tissue.
I had to learn that those sort of one line platitudes.
[00:12:27] Speaker B: They'Re in a better place.
[00:12:28] Speaker C: They're in a better place, not in pain anymore.
[00:12:32] Speaker B: I mean, I could go on any.
[00:12:34] Speaker C: Sentence that begins with at least, oh, my gosh, it should just be stricken from the language altogether. And I quickly realized that those one liners were not for me, they were for them.
[00:12:49] Speaker B: How long did y'all live in Chicago? I'm curious.
[00:12:52] Speaker C: Four years.
[00:12:53] Speaker B: So the whole time, did she pass away while you were in yeah.
[00:12:56] Speaker C: Yeah. So we moved to Chicago just before her first birthday, and then we stayed for almost a year after she died.
[00:13:03] Speaker B: Did they have any specialists there. I mean, Chicago is huge. You're right.
Where is the main specialist hospital for epilepsy?
[00:13:13] Speaker C: So there's three. We were so crazy lucky. There were three hospitals and she was seen at every single one of them. I took her all over the country because we never found out what was wrong. The only reason they diagnosed her as neurodegenerative was because they could see in MRIs that her brain was getting smaller. Okay. So we actually didn't get her specific genetic diagnosis until six months ago, three and a half years after she passed away because we donated her brain to mean the whole thing is absurd. But her final home base for medical care was Rush University in where? Chicago.
[00:13:55] Speaker B: Oh, Chicago. Okay. Yeah. You are fortunate because I would feel with with everything that's happened and all the grief that you're going through, I would still feel good that she got the best care that is out there.
[00:14:11] Speaker C: Yeah. And I made sure of it.
We were very fortunate that we had the financial means that I had the time to be home with her and to do the research, that I had the education and the connections to do all of these things so that I could I can't remember how. I mean, over a dozen hospitals and doctors that she was seen by trying.
[00:14:33] Speaker B: To figure it out. Talk about the grief, though.
I don't know how to ask. How long did it take you to feel like you could talk about how you were feeling?
[00:14:47] Speaker C: I am a talker.
[00:14:51] Speaker B: What?
[00:14:54] Speaker C: Disclosure. My mother is a mental health therapist, and so I have been in talk therapy since I was ten years old after my grandmother passed away. And I was very close to her. So it has just always been in my nature to talk through my feelings as something that I needed to do, whether I had a therapist or that was to my husband or to a friend. Verbalizing my feelings has always just been ingrained in me as something that is important and something that I needed to do. So it did not take long for us to move to Chicago and for me to find a therapist because I was like, this is so much I cannot handle losing my identity, losing the dreams of what I thought my daughter's life were going to be. And that's honestly where writing came from too, because it was a way for me to pull these crazy thoughts out of my head, combine them to letters and sentences and paragraphs, and they weren't as scary when they were on paper or on a computer screen. I could make sense of them, I could process them and then sort of let it go. And if those feelings resurfaced, I had this essentially online journal that I could go back to. It also helped me realize that I'm not that special. And I mean, that that sounds harsh. I am special in all of the ways that Mr. Rogers and Sesame Street I am special, right? But nothing that I am feeling is unique to me. My story is unique to me. My life experience is unique to me, but my feelings and the way it affects me is not. Your reaction is not my reaction is not being a puddle on the floor of the bathroom, having to take constant naps. Because I feel so exhausted by my grief.
The shame that can come with grief at times. The worry that people will see me laugh or smile and think that I'm over her. All of the guilt. Did I do enough? Did I do too much? How long am I supposed to be grieving? When am I going to feel like me again? All of these feelings, grief is weird, but it is weird across the board. And the way that we experience it and we feel it is so similar. And writing and sharing my writing exposed me to that because so many people came back to me after I would post a blog and they would be like, oh, my gosh, me too.
[00:17:22] Speaker B: Yes, well, and I bet some people have a I know some people have a harder time expressing their feelings. And so when they have read that in your book, which we're going to talk about after the break even more, because I want to mention something that has to help people be able to get out what they're feeling because they don't know how to do that. And that can really complicate the grief, too, in a mental health term.
[00:17:54] Speaker C: Look, nothing is ever going to make losing my daughter and seeing her suffer worth it. Nothing can ever make grief and loss worth it.
And I am also not someone who thinks that everything happens for a reason. However, I do think that we can make reason out of even the worst things that happen in our lives, right?
[00:18:21] Speaker B: And that's what you're doing.
[00:18:23] Speaker C: That's what the blog, that's what this book has meant for me. It's making reason out of it.
I can articulate my emotions and so if I can help others do that, if I can give them a book and they can share that with a family member and be like, this is what I'm feeling right now, read this chapter. Can you read this section? And I can help give them the words so that they can find that compassion and that comfort and that support that they need.
It doesn't make it worth it, but it certainly helps.
[00:18:55] Speaker B: No, it helps. We're going to take a break right now, Kelly, and when we come back, I want to talk about your first holiday season without Adelaide and what that meant and what advice you have for people who are listening if this is the first holiday season without their loved ones. So hang on. You're listening to Brain Matters on 90.7 the Capstone.
[00:19:29] Speaker C: Tuscaloosa.
[00:19:31] Speaker A: This show is not a substitute for professional counseling, and no relationship is created between the show hosts or guests and any listener. If you feel you are in need of professional mental health and are a UA student, we encourage you to contact the UA Counseling Center at 348-3863. If you are not a UA student, please contact your respective county's crisis service hotline or their local mental health agency or insurance company. If it is an emergency situation, please call 911 or go to your nearest emergency room.
[00:19:59] Speaker C: You.
[00:20:14] Speaker B: Gunther, and we're talking tonight about coping with grief during the holiday season, and my guest is Kelly Cervantes. Kelly has written a wonderful book. Is this your first book that you've written?
[00:20:25] Speaker C: This is my first book, yes.
[00:20:27] Speaker B: It's called normal broken. And I'll tell you something that is unique about this book. And Kelly, you can expand on this, but what is unique about this book is the chapters are not necessarily written in order. They are written to where you can start in the middle of the book. You can start wherever you need to start, and then just kind of swap around what you feel like you need. Is that correct, Kelly?
[00:20:52] Speaker C: That is 100% correct. Grief is not linear.
[00:20:56] Speaker B: Is that why you wrote it like that?
[00:20:57] Speaker C: That is 100% why I wrote it like that, because grief is not linear. And I had this preconceived notion. I had heard of the grief stages and that I was going to go through this stage and then that stage, and then I would come to acceptance and there would be like a shining light that would come down on me and someone would give me a medal and say, you won grief and you're done.
[00:21:19] Speaker B: Would be nice.
[00:21:21] Speaker C: It doesn't work that way. It is a deranged chicken dance. It is three steps forward, two steps back, and everywhere in between. And so my grief journey is not going to look like someone else's journey.
So I wanted this book to be a companion. I wanted it to be the friend that could meet you wherever you are in what you're feeling on that day. So maybe you start with chapter three and then you jump to ten, you read two and then six, because that is how your grief looks, and that's what you need on any specific day. So the chapters are titled when getting out of Bed deserves a Medal. When you're facing anniversaries or other meaningful dates when you're ready to be okay. So that you can read it cover to cover, but you certainly don't have to also, because when you're in the thick of grief, the thought of sitting down and reading a book is just daunting.
[00:22:20] Speaker B: But reading a chapter, yeah, you might.
When did you feel like you were able to start working on your grief?
[00:22:34] Speaker C: Over a year. It was over a year after she died before I decided to take the first steps toward healing.
[00:22:45] Speaker B: I think one of the biggest thing when we lose someone, other people, this is common. Other people, even your spouse probably think that they know when you should be ready to move on. I don't know if I said that the right way, you know what I mean?
[00:23:06] Speaker C: Though I do know what they think.
[00:23:09] Speaker B: Oh, she's been this sad. Wouldn't get out of bed for six months. It's time to move on. And that sounds very harsh, but I think that's how some people think. And I think people lose friends over this. They lose coworkers over this when they are going through grief because I think people just stop being compassionate sometimes 100%.
[00:23:36] Speaker C: It is a major issue. And it is something that I have heard from so many people, honestly, because so much so, my daughter died in October of 2019 and then six months later, it was COVID, which felt like some cruel joke, but I felt like I sort of got this buffer where I got to stay in my house and not have to venture out. And honestly, what I probably should have been doing is trying to venture out, but that wasn't even a possibility.
So I felt like I got this pass from a lot of people because I didn't have to turn down their invitations.
There were no invitations to turn down.
I remember around a year my mother saying, I want you to start thinking about healing. But it was really hard for me because I thought that healing meant moving on. I thought it meant forgetting her. And that was never going to happen. She was my daughter. I'm never going to forget her. I'm never going to move on with her.
[00:24:41] Speaker B: Well, I don't think at that point, honestly, I don't think anybody knows what moving on looks like or what healing looks like.
[00:24:48] Speaker C: No, it's such a bizarre because the pain is so deep, because the love is so strong, right? They are two sides of the same coin. And it really wasn't until it was the day before President Biden's inauguration and he was doing like a COVID-19 memorial. And regardless of your politics, this man knows grief. He lost a wife and an infant child in a car accident, an adult son to brain cancer. This man has lost a lot. And he says in this speech, to heal, we must remember. And I had never thought of it that way before that in healing, I needed to remember her. I needed to carry her forward with me.
And that was like this light bulb that went off where I was like, okay, I can do that. I can carry her with me. I can remember her. I can talk about her. I don't have to forget her. I don't have to leave her behind.
And I can grow into this new person that I am with her, because that's another thing that people who are not touched by grief don't understand, is that I am never going to be the same person I was before she died. I'm never going to be the same person I was before she was born. I'm never going to be the same person I was before I was a mother, before I went to college. Major life. Things change you and that's not a bad thing we're supposed to change.
[00:26:21] Speaker B: It's not a bad thing. I think some people though around you can't handle that. It might be a partner, it might be a spouse, it might be a family member, it might be a friend. I don't think they can handle that. That you will never be the same.
[00:26:34] Speaker C: And I think there has to be some honesty around that. I will never be that version of me again. This is who I am and you can support me and love me as the person that I am now.
This has been a great friendship and I'm so grateful for our time together but this isn't going to work for me now because it does it changes you forever and ever and we don't have to apologize for that.
[00:27:00] Speaker B: No, you shouldn't have to. So Adelaide passed away in October only two months later is this holiday season. So it was very soon for you. It wasn't like you had January, she passed away and had the whole year. I don't know what's better and that sounds horrible to say rather because I've been through it with many of my students personally too and I don't know if it's better to go ahead and have it happen soon so that you don't dread it. Because I've worked with many students who this is what we talk about month after month is dreading whatever anniversary it is. It might be a parent's birthday, it might be the parent's death day, it might be Christmas, whatever but dreading it.
[00:27:49] Speaker C: And I don't think that anticipatory grief is real and that is a whole thing. I don't think it matters whether it's sooner or later. It all just freaking sucks. I think I spent half of Thanksgiving dinner was at my cousin's house. I think I spent about half of it in the bathroom crying.
[00:28:08] Speaker B: I can't even believe you went.
[00:28:10] Speaker C: I can't really either. But I was in a go go mode because I was terrified that if I stopped I wasn't going to be able to start again. So I just tried to keep going with life as much as possible.
[00:28:23] Speaker B: Oh and you had a four year old.
[00:28:25] Speaker C: Well he was seven by the when she died he was seven.
But even then like Christmas I was like okay I have to get out of bed and we have to do Christmas and I have to push through for him. And then I went and spent about 2 hours in bed and he had just gotten all of his toys and was so excited and so I don't think he really noticed but no, I did not participate.
I gave the bare minimum in participation for those mean. But even now it's still what I have learned to do and especially since we've adopted my daughter because that was a whole other thing.
I'm missing Adelaide desperately during the holidays and it still stings. And now I have this new daughter and all of these complicated and contradictory emotions and the realization that I came to I think a lot of times we hear but and but in some of these situations are so complicated that you just need a period. I am grieving my daughter and I miss her terribly and it freaking sucks that she can't be here. It sucks that she can't open those presents, period.
I love the holidays, I love seeing the joy in my children. I love that they are here and that we can celebrate together and I can experience that joy with them. Period. Both statements are true. One does not have to affect the other. Both of those emotions can coexist inside me and have their space and sometimes the grief overpowers and I need to take a minute by myself or ask someone to sit with me and sometimes I can sit in the joy and the happiness and the excitement.
[00:30:14] Speaker B: What would you give somebody? What would be the number one piece of advice that you would give somebody who's just lost someone? And I mean, that's hard. I put a lot of pressure on you just asking you that because there's probably a lot of things well already that you've talked about. But what was the one thing that I'll go the opposite first, let's do this first. What was the one thing that hurt you the most or upset you the most when somebody would come and talk to you and then counter that with what would be the most helpful thing, do you think for somebody right now?
[00:30:51] Speaker C: The most hurtful is actually when people wouldn't acknowledge her or the loss. It wasn't the one line platitudes it would be when I would see someone that I hadn't seen since before Adelaide died. And that wasn't one of the first things that came out of their mouth. I want them to acknowledge this hole in my life. I need them to acknowledge that. I need them to see this pain.
I needed that.
[00:31:24] Speaker B: I think that's the number one thing that people do wrong, honestly is I think they try to tippy toe around people and not talk about that person because they think you're going to completely fall apart.
[00:31:38] Speaker C: As if you're not thinking about them all the time anyway. You're not bringing up anything that I haven't thought of.
[00:31:44] Speaker B: That's exactly right. I honestly think that most people like you're saying want their loved one to be brought up because they're not forgotten by that person. They'll never be forgotten by you, but by the people around.
[00:32:00] Speaker C: Yeah, absolutely. And then the best thing that was ever said to me was I met a. Woman. It was a mom at my son's soccer practice. And we met her after Adelaide had passed away, and so she didn't know our story. And she asks me how many kids I have, which is always a challenging you know, I'm incapable of denying I, you know, tell her about her and that she's passed away. And her response was, oh, my goodness, I'm so sorry. What was she like?
[00:32:42] Speaker B: Me?
[00:32:42] Speaker C: Not any one know, brush it off. Oh, well, I'm sure she's in a better place or heaven needed more angels or at least she's no longer in pain or any of those.
She didn't deflect to make herself feel better. She didn't ask anything morbid about how she died.
She wanted to know what she was like when she was alive.
[00:33:08] Speaker B: And you know what? You didn't, did you? No.
[00:33:11] Speaker C: And that was the best I'm like I got to share the joyful memories, how she was so feisty and sassy and if someone was squeezing her too hard, she would slap them across the face. And I would have to pretend that, oh, she didn't absolutely meant to do that. She didn't want you to hold her anymore.
How she hated baby shark, but she loved Sinatra. Like, I love sharing these tidbits because that was my daughter. That's what I want to remember about her. Not the seizures and the resuscitations and the traumatic events and that's how I want other people to remember her.
[00:33:51] Speaker B: That's amazing. And that's a good thing for somebody to ask is, like, be specific in asking about that person's loved one or their friend or whoever they've lost, because I really think people enjoy talking about it. And like I said, you might have cried a little bit. I don't know, but you didn't have a meltdown like people fear. I've had people tell me that, oh, I'm scared to ask my mom about so and so and so because I'm afraid she'll start crying. Well, maybe she will start crying. I mean, maybe she will, but that's okay.
[00:34:25] Speaker C: That's completely okay. That shows more about emotions are going to happen whether we want them to or not. We have no control over them. We have no control over our own emotions. We cannot even pretend to be able to control someone else's emotions. And so that is something we have to sort of leave off to the side and just be the best support system that we can be.
[00:34:51] Speaker B: Hang on. You're listening to Brain Matters on 90.7, the capstone tuscaloosa.
[00:35:09] Speaker A: This show is not a substitute for professional counseling, and no relationship is created between the show hosts or guests and any listener. If you feel you are in need of professional mental health and are a UA student, we encourage you to contact the UA counseling center at 348-3863. If you are not a UA student, please contact your respective county's crisis service hotline or their local mental health agency or insurance company. If it is an emergency situation, please call 911 or go to your nearest emergency room.
[00:35:49] Speaker B: Matters.
Gunther and we're talking tonight about coping with grief during the holiday season, and my guest is Kelly Cervantes. Kelly has written a wonderful book. How therapeutic was it for you to write the book?
[00:36:08] Speaker C: I am a firm believer in talk therapy. I would not be talking to you today without my psych meds. I will tout them from here to kingdom come.
Writing helped the most because I could process those complicated emotions.
[00:36:28] Speaker B: Well, now you were didn't I read somewhere you were involved? Help me with one of the epilepsy organizations, cure Epilepsy.
[00:36:37] Speaker C: Yes, it's an epilepsy research organization.
[00:36:40] Speaker B: What was your role in that organization?
[00:36:43] Speaker C: So I sit on their board. I was most recently their board chair and actually just passed that hat off to someone else. But I do still sit on the board. I host a podcast for them, do fundraising, I mean, sit on any committee that I can because it helps. It was something that I started when my daughter was alive because I felt very helpless when it came to her care. But being able to raise money, being able to be an advocate, to raise awareness around epilepsy, to raise money for research that will make a difference, that, to me, felt productive when I was at the worst. And it's something that I've loved even after she died, because that research isn't going to help my daughter. But I love staying connected to this community because that's a direct tie to my daughter.
[00:37:31] Speaker B: Well, and let me ask you, did you know when you were pregnant what the diagnosis was going to be, or was it a complete shock when she well, she wasn't diagnosed, you said until about seven months. But now that you have been involved, I don't know how involved. You are one on one with parents who have just received this diagnosis because I think it would be so helpful to talk to somebody like you. I'm sure there's other parents to thousands of other parents, too, but just because you're so lost.
[00:38:08] Speaker C: Yeah, it's terrifying.
I talk to newly diagnosed families. They'll connect with me on Instagram or Facebook regularly. I always recommend if you can find out specifically, like, if there's a certain type of seizure or you can get a specific epilepsy diagnosis, whether that's infantile spasms or tuberosclerosis, or if you can get the genetic testing and get a genetic search, the hashtag hashtags, find the families on social media that have a similar diagnosis. And then a lot of times there's already these sort of established communities that you can just sort of ingratiate yourself and become a part of.
The podcast that I host for Cure Epilepsy is called Seizing Life. It is an incredible resource.
[00:39:00] Speaker B: I like the title.
[00:39:01] Speaker C: We have done over 100 episodes that cross the spectrum of about every kind of epilepsy, interviewing families and patients, researchers, clinicians, and so I find that that is also a really great resource. Families who are coming into a new diagnosis.
[00:39:19] Speaker B: Did you ever participate in a grief support group?
[00:39:23] Speaker C: I attended a grief retreat and that was actually where the title of my book came from.
[00:39:32] Speaker B: Because I was going to ask you about that.
[00:39:35] Speaker C: Yeah. Because I felt broken. I didn't fit into any of my social circles. I didn't feel like I fit into the epilepsy and disability circles because I no longer had a child in that community. I didn't fit into with my friends because I felt like Eeyore or Debbie Downer. I didn't even in my own family. My husband and I grieved so differently. A lot of times I felt broken in my own family.
And then I attend this retreat and I meet all of these women who have also lost children at different walks of life, different ages, different causes of death, but they had all lost a children. And with those women, for the very first time, I felt normal, broken. I felt normal in my brokenness. I felt like I could just be me. This version of Kelly as I was as I was figuring out what this version of Kelly looked like, carrying grief with me forever and ever with these women, I could just be normal. And that was so so that was right before I decided to start my healing journey, where I was like, okay, I think I can do this because I know I'm not the only one.
[00:40:46] Speaker B: Well, and I'm glad you said that, because we have struggled here at the counseling center. And maybe it's just the age group. It may be the age group to keep a grief support group going and thriving. And it's been very difficult. I've been here for many years and I can't remember really. Did you ever do a grief group, Catherine? Did yours make a lot?
[00:41:11] Speaker C: Yeah, mine did for the first semester. But then everybody's schedules changed and then most people couldn't come back or weren't available. And then it kind of did sell.
[00:41:21] Speaker B: It's just hard sometimes. I think it's hard sometimes, like I said, to get this age group, 18 to 24 year olds, basically to come in and talk about grief. They'll do it individually, but you would think like you said, you would think feeling validated in a group would be the number one reason that somebody would want to come to a group. But I don't know how.
[00:41:50] Speaker C: I attended the grief retreat when I was 38 maybe, and I did it begrudgingly. I signed up after maybe one or two glasses of wine and immediately regretted it when I saw the email the next morning and had to convince myself not to cancel.
Group therapy is very intimidating. I was terrified pulling up to the house. But what I quickly realized is that all of these women were scared too. Everyone was anxious and nervous, but we were all coming to this with a similar story and that we have such a tendency to make grief comparative and competitive and no one is served by that.
[00:42:36] Speaker B: Isn't that the truth? That is so interesting. You mentioned that some of the articles I've read because I think I've done other shows about grief before but not really grief around this time of year, which is just hard, period.
And some of the articles gave some just practical tips.
Do you have any practical tips that you do for yourself to memorialize Adelaide during this time of year that you think would help other people?
[00:43:06] Speaker C: I do have some tips. I think that it is important for us to keep our loved ones memory alive in whatever way that looks like for us. So maybe it is when you take the family photo, you hold a picture of them or something that represents them because I know that that can be incredibly difficult. Then you look at that photo and all you see is the person who is missing. Well, it's okay to represent them in some way.
I think by opening the floor to share stories with the family, it's about not denying those emotions. If we need to cry, allowing ourselves that escape to cry because pushing it down I don't know about anybody else, but when every time I try and push my grief down it just comes out as like an exorcism later, it is not pretty and does no one any good. So allowing yourself to feel the grief but also giving yourself permission to feel the joy, not feeling guilty, let the happiness in because the intensity of your grief does not serve the person who has passed. They're not looking down on us and judging if we're grieving them enough. So it's okay to smile, it's okay to laugh, it's okay to find the joys in the simple pieces of the holiday and to remember our loved ones while we are doing it.
And sometimes that may mean having to have a conversation, an uncomfortable conversation with family members in advance to say, hey, look, I would love to have a place setting at the dining table for the loved one who isn't there, and maybe that's too hard for someone else, but you can have that conversation.
And we have to talk about these things and think about them in advance. And it's okay to hold space for our loved ones who aren't with us in whatever way that looks like for.
[00:45:10] Speaker B: You, and stop caring so much about what other people think we should do.
[00:45:16] Speaker C: Thank you.
[00:45:17] Speaker B: If you're like, smiling. I don't know if it ever happened to you, but was there a point where you did start feeling better and you started enjoying things again in small bits, and somebody said something to you about it and they might? Not have confronted you like, oh, but it was something that triggered you to make you think that they are looking at you like you have forgotten. Adelaide.
[00:45:44] Speaker C: People would say, oh, it's so good to see you smile again. I can see the light back in your eyes, or just comments on even just pictures that I would post online. And I would immediately sort of backtrack and be like, oh, my goodness. Do they think that I'm over her? Do they think that I'm not grieving her anymore?
Because I still am, just because I wasn't the moment that picture was taken. Oh, crap.
And then I eventually realized that it doesn't matter.
[00:46:18] Speaker B: It doesn't matter. And honestly, I don't think you can relate until it happens to you.
I hate to say that, but you just can't relate until it happens to you.
And those are the people who only know what you're feeling a little bit. I'll say a little bit because not even your husband can understand what you're feeling. No.
[00:46:41] Speaker C: And that was a really hard thing.
[00:46:47] Speaker B: That's what I said in the introduction. It's isolating, and you feel alone, you feel lonely.
[00:46:54] Speaker C: I had to realize. I think we put a lot of pressure on our spouses to sort of be the end all, be all for us or our partners, our significant others, whatever it is. We expect them to sort of take over all of our emotional needs. And that's a really unrealistic expectation to have for any one person.
I use this analogy where I'm like, if you or your loved one can't fix the sink, you don't get mad at each other. You call a plumber. And so sometimes it's okay. My husband was not capable of sitting with me in the dark and crying and just being with me through that. That wasn't something he was capable of doing because of his own grief, because of his own guilt, because of his own experiences. That just wasn't something he could do. But I had girlfriends who could do it, and so I would call them or I asked one of them to fly out for the one year anniversary of Adelaide's passing because I knew my husband wasn't going to be able to be there emotionally the way that I needed. So I outsourced it. And that's okay, too. I think we have to acknowledge and accept what our current support systems are capable of and try and seek out those people that can fill those gaps that we're feeling.
[00:48:17] Speaker B: Well, those are skills, though, that you are good at. You can tell you have good communication skills. You've already said that you're good at. And maybe this has to do with your therapist, mom. Of course it does.
I think you are not afraid to ask for help. And I think some people are afraid to ask for help. They see it as a weakness. And it's really not about strengths and.
[00:48:40] Speaker C: Weaknesses when it comes to no. I didn't love asking for help. Adelaide taught me how to do that because I didn't have a choice. I had to ask for help with my son if we were in the hospital, who was going to get Jackson from school? Because Miguel was working. He was at the you know, needed someone to take him to soccer practice or someone to pick up Adelaide's medications or whatever it was. I had to have that help. And so she trained me in how to ask for help, although I still struggled after she died because I was like, well, she was the reason that I needed so much help. And now she's gone, so I don't deserve to ask for that help anymore. And so even then, it still took me a minute to be like, okay, no, because the truth of the matter is everyone wants to help you. They see you hurting and they love you and they care for you.
[00:49:33] Speaker B: I don't know what to help. Yeah. Okay. This is a weird question, but I got to ask you, miguel, is he still on Broadway?
[00:49:42] Speaker C: He is until January 7.
[00:49:45] Speaker B: Okay, so has any of his how do I ask this, any of his celebrity helped acknowledge what has happened to you guys and helped be able to help other people? Is that the right way to ask that? Do you know what I'm saying?
[00:50:02] Speaker C: So when she was alive, bring it more know, we recognized that we had this platform. People cared what Miguel had to say and by proxy, me, because he was Hamilton. He didn't write the show, but he was starring in it and in Chicago. And so we were gifted this platform, and we sort of mutually decided that it was important to us to do something with that, to do good with this platform, this megaphone that had just been placed in our laps. And so we started to use that for epilepsy awareness and to raise the funds for research and to be vocal about this story because people were going to listen to what he had to say, whereas some other family doesn't have the opportunity to have a microphone and a camera put in their faces. And so that helped significantly with those feelings of productivity and being able to feel like we could do something.
After she died, it was a little awkward because there was an article in People magazine about her dying, and so that got a little OD because I didn't feel like we were celebrities, really.
But to see her death publicly displayed in that way, I guess in some ways maybe it was validating, but in a lot of ways, it just felt weird.
[00:51:34] Speaker B: Well, because of her situation, because of the epilepsy. I mean, on the one hand, it was good to bring that to light. I get that. But then on the other hand, I would have felt that there were people who were, like, curious in a bad way.
[00:51:49] Speaker C: We got people who would judge us, but there were comments about had we done enough and did we try this.
And that was hard because you never want anyone to think that you and I knew that we had done everything that we could. And I had dealt with comments like that throughout her journey. People sort of judging the fact that we chose hospice for her. We chose to let her die.
She did not have a seizure and die. She did not stop breathing.
The doctors couldn't help her. It was we made the choice to enter hospice and allow her to pass because there was nothing else that the doctors could do. And she was in significant discomfort and pain.
And it was awful. It was awful.
[00:52:40] Speaker B: Awful. Yeah.
[00:52:41] Speaker C: And so there was absolutely judgment there that we received.
And that was hard to read. But at the same time, I knew the people who knew us and who loved us, the people who had read all of her medical documentation.
I had to be strong within myself to know that it doesn't matter what Jane Doe, who lives 200 miles away from us, what she thinks about what happened. I know in my heart and my family knows in our hearts that we did everything that we could do and that we made the best decision that we could for our daughter with the information that we had at the time.
[00:53:19] Speaker B: That's all you can do.
[00:53:20] Speaker C: And that's all we can.
Grateful. I'm eternally grateful to Hamilton for allowing us the financial flexibility for me to be home with our daughter, for giving us the platform and the megaphone that has allowed us to be able to raise millions of dollars for epilepsy research.
That allowed me, the microphone, to be able to write this book and have people interested in it. Because my husband says all of these words on stage.
I am so grateful. And not for nothing, the producers and the original creative team for Hamilton has been so supportive of our family through all of so I cannot sing their praises enough and how much the show has meant to our family.
So it is I'm eternally grateful. There were some icky parts in there.
[00:54:12] Speaker B: But.
[00:54:15] Speaker C: Miguel calls it it was like we were holding a rocket in one hand and a parachute in the other.
[00:54:20] Speaker B: What could you do? I know have choices at your young age. It's the know. Thank you. Kelly. Gosh. Thank you for being on the show. Thank you for sharing your story with us and your just I feel privileged and honored to have you just I think I was just know to what has happened and I didn't even know about Miguel. I'm sorry. I'm embarrassed to say that. I'm just so embarrassed to say that. But I really have come at, you know, completely blind eyes. So this has really been a privilege. Not only are you busy with your kids and your dog coming in and out while we're talking, who is adorable.
[00:55:03] Speaker C: Thank you for your patience and all of that.
[00:55:05] Speaker B: I've done this a million times and it's an hour later. We talked about that before the show. So I'm always so thankful for people who are on Eastern Time Zone because it's like pitch black dark probably up there right now. So I appreciate it so much. We're going to edit the show. It'll be out next week. I'll let you know about it. But gosh, I feel so honored. How many shows are you doing to publicize your book right now?
[00:55:30] Speaker C: I bet you're doing it's a lot. It's a whole lot. Yeah, a couple a day right now. And then I was on a book tour. So I was in Tuscaloosa on Friday.
Thursday. Thursday I was at Ernest and Hadley bookstore. My cousins own it, my mom's cousin and her daughter and Hadley. And so if you go there, their children's reading room is Adelaide's room. It's named after my daughter and I actually just gifted them. I donated. There was a rocking chair that my mother had had made prior to Adelaide being born and us realizing that she would actually never be able to sit in it, but it was always in her room.
And it's just this beautiful rocking chair. But I've never known what to do with it. And so I gifted it to them. So if you ever make it into Ernest and Hadley bookstore, then you have to check it out.
Visit Adelaide's roots.
[00:56:29] Speaker B: This is a small I had no idea. I think I did know you were here.
I think I did know you were here, but for some what was the date? Were you here?
[00:56:39] Speaker C: I think it was Thursday the 16th.
[00:56:41] Speaker B: Oh, that's when I had strep throat, remember?
Oh, yeah. Horrible. I thought I was going to die. So yeah, you wouldn't have wanted me near you. So gosh, that is so neat, though. I'm going to have to go and see.
[00:56:56] Speaker C: Check it out.
[00:56:57] Speaker B: Let me make a few little announcements before we go. I always like to mention, don't forget our shows are recorded and podcasted on Apple Podcasts, audioboom.com and Voices ua.edu. Just type in Brain Matters and you'll see some of our past shows. You can also link to Voices ua.edu on the Counseling Center's website at counseling. ua.edu. I'd like to thank some people who have made our show possible tonight. As always, our executive director here at the Counseling Center, Dr. Greg Vanderwal, my producer, Catherine Howell, my colleagues at the Counseling Center, the Wbua staff, and of course, my guest tonight, Kelly Cervantes. And don't forget, we're on. We've got a final show next week and that show is going to be an interesting show. We've never done a show on people pleasing, so that should be very interesting. Join us again, same time, same place. Thanks for listening to Brain Matters and good night.
[00:57:59] Speaker A: This show was not intended as a substitute for professional counseling. Further, the views, opinions and conclusions expressed by the show hosts or their guests are their own and not necessarily those of the University of Alabama, its officers or trustees. Any views, opinions or conclusions shared on the show do not create a relationship between the host or any guest and any listener, and such a relationship should never be inferred. If you feel you are in need of professional mental health and are a UA student, please contact the UA Counseling Center at 348-3863. If you are not a UA student, please contact your respective county's Crisis Service hotline or their local mental health agency or.
