The Bright Side

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news, information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raven Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. 

In Brain News survivor, Mallory Rogers just released a book this month called A Stroke of Heaven. Mallory was in the middle of playing a volleyball game for Lubbock Christian University seven years ago when she suffered a hemorrhagic stroke. The stroke left her with deficits including no right peripheral vision, and this book follows her [00:01:00] journey since the bleed, as she puts it, God hit a reset on my life.

The point of the book is to help show others how to see life from a new perspective, where joy is a choice instead of a feeling. Rogers wrote the book with the hope of encouraging others who are suffering from brain injury. Living with a brain injury takes an immense amount of self-motivation and discipline every day she says, but it is possible to have contentment, drive purpose and motivation when your world is shattered. I haven't had the privilege of reading the book yet, but I will post how you can get to it in the description of the podcast below. Hopefully I can have her on as a guest soon. And speaking of guests with me today is Heather Golladay

and Heather is a very dear friend of mine and also the graphic arts designer behind AVM Alliance. Heather, thank you for joining us today.

Heather Golladay: Hello [00:02:00] Neighbors . 

Raylene Lewis: So a lot of times I think it's easy for us to think, oh, you know, kind of woe is me. This is hard on me, but it's also hard on friends too. What do you think people should do? Like how should people behave when this sort of thing happens? 

Heather Golladay: Well, for me, I don't, I sometimes I think I'm a little bit different. My husband had a stroke. Don't inundate me with texts. I will update like my main person or my main group of people and let that kind of finger out because I had enough. To take care of at that time, trying to talk with doctors, trying to coordinate with the nurses and what was our next steps and what are we gonna do and talk about exams.

And while I, I appreciate and I understand the, the thought process behind texting me, Hey, is everything okay? Is there anything I can do right in the moment? It's just very hard to split your attention and to constantly. Retell the story. It's just much, [00:03:00] it was much easier if I could designate. You know, Ray's sister is in charge of contacting the family, and Ray's friend is in charge of contacting his friend.

So when I found out about with you guys, I tried to have a lot of the communication go through me, write letters, and I'll deliver it. Just because you guys were dealing with so much that I felt. Trying to tell your story 726 times, or trying to constantly update people. It takes you away from where your focus wants to be and where it really needs to be, which is in the room.

And then when things settle, when you're in a room and you have a moment. , then you can reach out to everybody individually and say, you know, I know that you're thinking about us and I appreciate it, but in the moment it's just very, very hard and that's not where you need to be. 

Raylene Lewis: I agree. One thing that we did, which I thought was really helpful later on, is we found out about CaringBridge and we created a [00:04:00] Caring Bridge site for Kyler and Caring Bridge is a free website that you can go on to basically. Kind of do a blog that tells your story and then people can check on, check in on how you're doing or how your kiddo's doing by reading the Caring Bridge Bridge blog. And you can set it up so that you can, everybody can see it, or that you have to have a link, you know, so you can make it as wide open or as private as you want.

Heather Golladay: And I like that it has notes so that instead of your phone being blown up they can leave you notes and then as you have that free time, you can read the notes that are being left for you, and then it's, it's there. It's forever. So when Kyler was feeling better, he could go back and he could see what people were saying.

The same with, you know, the Facebook page that you started for Kyler. I think that was a phenomenal idea. You just don't realize how many people are literally sitting on the edge of their seat and want to know what's going on. I think that's just human nature. [00:05:00] is we, we wanna know how everything's doing, even if everything's going great, you know, and we can leave our notes on Facebook and it's something that you can share and, and show Kyler. You can show Kyle, you know, you can show everybody that didn't have that immediate one-on-one contact.

Raylene Lewis: That's true for Kyler. He has had a lot of hard days and being able to go back and read what people have written meant all the world to him. Later on it said he even told his doctors that it gave him the strength and the confidence to continue with his therapies, even though they were hard, you know, just because he knew that there were so many people that were cheering for him and praying for him.

What's one of the things that you feel like, especially since your husband had a stroke, that the community doesn't really understand when it comes to stroke because your husband had an ischemic stroke which is a little bit different than a hemorrhagic stroke.

Heather Golladay: Well, I think the one thing people don't realize [00:06:00] is my husband looks totally normal.

His sense of humor is the same. His coordination never changed. I mean, you know, you and I had that conversation at dinner and, you know, we did the typical stroke tests, you know, can, can you touch your nose? And he thought he was going through, you know, a drunk driving test and we thought it was really funny and he passed fine.

But what people in the community don't understand is what happens behind closed doors and. , there's a lot more stress because, you know, we all laugh because we lose our keys all the time. I mean, I found mine in the freezer. For us it's like, eh, you know, we, we for lost our keys, you know, and we didn't have brn bleeds or we didn't have brain bleeds or store ischemic strokes.

 My husband lost all sense of direction, so when I sent him to the store, goodness knows where he's gonna end up. You know, he may be end up, you know, visiting my parents in Austin by the time he's there. But you know, things like, did you take your medicine? And then the answer is, yeah, I took it. And you check.

No, he, they didn't. Or my husband lost his [00:07:00] keys and I went through, okay, did you do this? Did, I don't know. I can't remember. I don't know if I did that. So things like that where you constantly feel like it's always checking up on them and when they're out in public, you know, people joke about it, but I don't think they understand how much the individual.

sees those things that we do on a daily basis, look losing our keys, and they see it as. They're less of a person. 

Raylene Lewis: Kyler definitely has that struggle and that people don't understand that he's had multiple brain surgeries and that he's had a stroke. And so when he doesn't remember things, they kind of act like he's stupid or put off an error.

Heather Golladay: Well, and he's a teenager, so he's kind of stupid to begin with. , I mean, true. He's not gonna lie. Love that kid to death. But I think it's also hard with Kyler sometimes is like, are you being a teenager? Mm-hmm. , or is this a symptom of, you know, of, of what you have going on? You just don't know. I mean, my husband is considerably older, so is it just his age is why we're having some of these issues?

Or is [00:08:00] it from the stroke? And then, you know, God forbid we have a day and he has a headache and I'm freaking out because that was the only symptom he had was that massive, massive migraine. Mm-hmm. . So every time he says a headache, I'm jumping up. I'm like, what? How bad is it? You know? I feel like I'm going psychotic.

and then I'm like, okay, am I being overprotective? Am I overreacting? And I appreciate the fact that I can kind of bounce it off you, and you're like, oh my gosh, I feel the same. And that support group is really important, is to be able to say, I'm, I'm experiencing something that other people experience, so I'm, I'm really not losing my mind.

It's okay. Yeah. 

Raylene Lewis: I have to tell you, I often feel like I'm losing my mind because every single time carer says he has a headache, of course, just like with Ray, I'm like, okay, on a scale, what is it? You know, stay with me. And then I'm always asking what's my name? Make sure we're not like having a well, 

Heather Golladay: and it's worse when you have a have a kid because the kid so much desperately wants their freedom, right?

Every kid's goal is when can I move outta the house? When can I be a big boy? You know, when can I be a real boy like Pinocchio? And [00:09:00] yet they don't understand what it feels like as a parent, and especially as a mother. You live with your heart and your throat all the time and everything that goes wrong.

You're like, you know, I went through the worst thing of my life, so you know, what's next? What, what could, can I have prevented if, if I'm a second faster? Would it have been better? 

Raylene Lewis: Yeah. What did I do wrong? Yeah. 

Heather Golladay: Or could I have done it better? 

Raylene Lewis: Well, one thing I noticed is like for Christmas, you gave me a bracelet.

Yes. And it's, it's pretty funny because we kind of do this for each other, right? Like there're bracelets that are Morris Code. Morris Code, yeah. Yeah. And the bracelet I gave you was a zero F's given. 

Heather Golladay: Yeah. Zero F's given . It's kind of my motto. You know, I, my mom says that, she goes, how do you, how do you function?

Not get mad? I'm like, man, my F cup completely empty. Like, I got no more F's to give. 

Raylene Lewis: And the one that you gave me was, Look on the bright 

Heather Golladay: side. Always look on the, that's been my motto. My, my son will tell you every [00:10:00] time something bad happens, I'm like, always look on the bright side of life. He hates that song, but loves it.

Yes. We even got matching tattoos with a son , because that's always been the motto. You know, if, and I think, and that's one thing with you is I've always said, you know, you can focus on all the negative. And I'm not saying that, you know, 

Raylene Lewis: do you think I. , do you think I focus on all 

Heather Golladay: the negative? I think you do sometimes, especially when you get new bad news and not bad news.

Like, oh, you know, not, not the initial bad news, but let's say you were expecting improvement at the 10th degree and you only got it at the fifth degree. Right? Right. I, I think at that point you are looking at, I was hoping for X and I only got y at which point I'm, I'm trying to get you to understand, but you're missing the beauty of y.

You know, and, and you're so focused on x, that you're missing this small beauty to the point where, you know, when you were talking about him and, and celebrating his seizure free, Yes, Tyler. [00:11:00] Tyler 

Raylene Lewis: is seizure free for three months now. Yes. For the first time in two years. So, and 

Heather Golladay: I was so proud of you for saying, you know, we're gonna take that celebration and, and we're gonna actually celebrate it.

We're gonna, we're going to focus on why, instead of saying, well, it's only been three months, or it's only been one month, you know, let's, let's grasp that why and be happy with that instead of our lofty ex goal that we may or may not achieve. 

Raylene Lewis: Yeah, that's true. The we're, we have a focus book that's called Suffer Strong.

One of the things that I struggle with, that the book says is not to create, you know, future expectations because then you just get disappointed if they, if they aren't met like you wanted them to be. What do you think is the biggest struggle that you face? I know with, with Gator, we're always talking about him getting lost, and that was a big problem for Kyler too, for.

Right now it's leaving Kyler. I don't feel like I can leave Kyler because what if he has another bleed? 

Heather Golladay: What if it's [00:12:00] that? What if statement? It's so for me, I really just want to, I wanna shove a tracker up his behind . And I know that sounds so bad, but he doesn't understand that phone is my lifeline to him without sounding like you know, this helicopter wife.

There's that fine line between. Having freedom or giving them freedom, but still being in a situation that, that if that what if happens, you're there to help. Like it is very, very hard to have both. 

Raylene Lewis: Yeah. Kyler would forget his phone so much and also get lost that it became such a problem that I put a tracker on Sammy.

The service 

Heather Golladay: dog right back to putting the tracker up his, up his butt. , you just, yeah, but back to always look on the bright side. I think if you constantly focus on his inability, he's also going to see that. And then his self-esteem begins to envelop the, his inability. He, he becomes what? What you constantly [00:13:00] focus on.

So with somebody that has had a stroke and has some deficiencies, I think that you have to find a new relationship in a new way so that that other person realizes, you know, you're not their nurse, that's not how you identify yourself. You are their wife, you are their mother, and they are a strong, courageous individual.

That has had a horrifying experience, but you have to focus on that positive side and not always on their illness or always on their disability, because the more you focus on that, the more they see that and they react to it. And I think the more that it becomes a part of them as opposed to them rising up and finding ways.

Around what they can no longer do. 

Raylene Lewis: We just need to continue focusing on what the things are that they can do and celebrate those things and try to [00:14:00] work around the memory and the disabilities by saying, okay, well we're just gonna put these new systems in place. And then try to follow those systems and move forward.

Heather Golladay: And your systems may not work. I mean, it may be a complete plain dive crash and that's okay. I mean, there's a lot of times that between you and I, we try new things and they are a complete disaster. Do you need to understand that you change the things you can change? You know, there's that great thing God, you know, help me change the things I can change and give me wine when I can't

Yeah. It's. You just have to work and celebrate the good things because some of the bad things, there's nothing you can do about it. There is nothing you can do about the fact that Kyler has an avm. There is nothing you can do about that. When my husband passed, I was receiving Your first husband. My first husband, yeah.

When he passed, I was receiving. Text messages like inundated. My phone was going off. Ding, ding, ding. I mean, not that that wasn't annoying enough, but [00:15:00] I was hearing from people that I hadn't talked to in years and I was like, how, why now? Do you reach out like in a moment of drama that, that you reach out and it's okay to be angry, like it's okay at the moment to, to.

You know, punch your best friend in the face as long as you don't do it. I mean, that would not be okay, but to have that feeling of anger and frustration and how dare your life be so good and so easy and, and here I am in this situation. It's okay to be angry, but you have to take a breath and a step back.

And after you've had time to digest what's going on and open yourself up to the, to the love that people are trying to show you. But if you know for people that are listening that are, that are not the AVM kids or the AVM families as a friend, like if you hadn't talked to somebody in. Six months and you throw out a [00:16:00] text like in their worst part of their life, maybe just send a letter or a nice little card first.

 Yeah, I, I've said before in the podcast, I'm a little different, but those random people text, you know, now looking back, I can be like, I mean, I appreciate it. They were probably just sending love, but, you know, you, you, I always felt like, oh, So I had a train wreck and you couldn't turn your head so you thought you would reach out and be a part of it, and that that really.

Frustrated me. 

Raylene Lewis: Well, you've been, you've been through a lot. You're, you've lost your first husband and your second husband's had a stroke. And it's just kind of, I feel like one thing that this has opened up my eyes to is I do have pity parties, like, where I'm like, God, why is my life like this? But the more I look into it The more I feel like there are other people around me, everybody's going through something.

Sure. The question is just what that something is, and it doesn't do any good to grade my something is worse or my [00:17:00] something is better. Yeah. You know, people are just, they're, they're, they're always dealing with something and so I think that when you. Are around others, whether or not you're having a good day, you need to just be aware that, 

Heather Golladay: hey man, pity parties are great cuz there's nothing better than a party of one at, at the, at the pity table.

And sometimes you need that. Like, look man, there's days that I have gone into the bedroom and I've had a good breakdown. The thing is, is you can't live at the pity party table. You know, you, you have to. You have to get out of that, if not just for yourself, but for your family, for your kid who's going through what they're going through for your husband who's having a stroke, you know, you can't live in.

A world of negativity. And that's why I try to live and focus on always look on the bright side, is because if you are constantly enveloping your life in [00:18:00] negativity, that's what's going to come of it. And with everything that I've been through from bankruptcy to the loss of a spouse, to, you know, a husband with a stroke, all of that together.

The more that you live in that dark space, the more that darkness spreads. It takes over. It does. Which is why every time that I, I notice that you're getting to that point where you're fo you're focusing more on the darkness or, or the negativity. That's what I'm trying to pull you out of it. And I'm like, Hey, look, there are things to celebrate here.

There's things to be happy about. Yeah. I mean, it could be worse. Yeah. It could be better too, but, You know, look at the miracles that are, that are actually here. 

Raylene Lewis: Yeah, you're right. You're absolutely right. And I, I appreciate all those days where like, you even were like, okay, we're, I had my blinds up in my bedroom and you're okay.

Heather Golladay: Nope. Open the blinds. Come on, we're going, let's get us some vitamin D and some Bloody Marys . Yeah. [00:19:00] 

Raylene Lewis: Good job, . Thanks for being my friend. 

Heather Golladay: Hey, you know, it's, it's a tough job, but somebody had to do it and I think I was the only applicant. . 

Raylene Lewis: Well, do you have any last bit of advice? 

Heather Golladay: If you're a friend of someone that's in it, you become a pillar.

You know that family is focusing on a catastrophic. event and you can't become a pity party with them. You know, you have to be the strong one. And then also co be a coordinator. If they're off and they're going to a hospital and you know, their friends all wanna text them, say, Hey, you know what, let's write notes and I will give it to them.

Give them. An an opportunity to come together as a family, but really, you know, you've gotta step back and you've really gotta be like, what is it this family needs? And maybe they don't necessarily need you mourning with them, but maybe you need to be the one that says, Hey, this sucks, but [00:20:00] look, this is great.

And, and find that other path. 

Raylene Lewis: Well, I really appreciate you helping us find the Bright Side regularly.

Heather Golladay: Always look on the bright side 

Raylene Lewis: and helping me keep my sanity as well. Well, thanks for coming today. 

Heather Golladay: Hey, not a problem. I'm, I'm here 24 7 . 

Raylene Lewis: In chapter five of our focus books Suffer Strong. Katherine talks about redefining loss and opening our hands.

She starts with a story about an assignment where she was asked to pick a word to sum up her hopes for the year ahead. I found this mildly amusing as I sell houses for a living and every year my broker has all her real estate agents do the same thing. Telling the company my word for the new year is not a task.

I have found very much joy in. Catherine points out that it is human nature to rebel against losing what defines us, and that even the fear of loss can paralyze. She [00:21:00] says, losing something familiar and precious can also help us let go of the illusion of control and the weight of expectations that have ruled us our whole lives.

Experiencing loss makes it clear that outcomes are not always ours to choose. This is something very hard for me because I want to be in charge of my own outcome, but it's important to look at loss not as an ending, but a new beginning. This can be absolutely excruciating when we know that things will never be the same again.

If we don't have X or if things aren't Y, then who will we be? This gets to the heart of redefining loss because with loss comes fear. Catherine recommends starting out by naming the fears we have, because when we name a fear, we become more aware of what is going on inside us. After loss, most people tend to either remain in their pain or [00:22:00] pretend the pain never happened.

Loss will always leave us with reminders of what was and what will never be. But it doesn't have to leave us without hope and restoring hope after loss is possible. She says, suffering strong, looks like being grateful for the things that remain in your lives. After the aftermath of catastrophic loss, surrounding ourselves with people who help call out new life in us, and researching, talking about and dedicating hope and life with God, releasing what we thought we were entitled.

Today's quote is by children's author Judy Bloom. Each of us must confront our own. Must come face to face with them. How we handle our fears will determine where we go with the rest of our lives to experience adventure or to be limited by the fear of it. I always like to end our time together with a motivational song recommendation.

I don't [00:23:00] play the song because of copyright laws, but there have been many times on this journey where a song really spoke out to me and helped me with my. Today I'm recommending you check out whatever it takes by Imagine Dragons from their 2017 album, evolve. This song is about striving towards your goals.

Sometimes people crumble with the hardships they face, but this song is a celebration of the strength of the human spirit and the face of insurmountable odds and terrible tragedy. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational. Don't be shy.

Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone. Take care ya'll.