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Unknown
Hi, everyone. Welcome back to another episode of the podcast today I have on Casey Ames, and she is here to share a story about herself as well.

00:00:08:20 - 00:00:10:22
Unknown
Hi. Thank you for having me.

00:00:10:22 - 00:00:30:23
Unknown
So the story I want to share happened to me, a year and a half ago is January 2024. And I was just sitting at my desk working, and I had this, like, creeping, strange headache kind of creep on, and I had, a beanie on. And so I thought like, oh, you know, maybe the beanie is too tight.

00:00:30:23 - 00:00:50:02
Unknown
And I took it off and it became hard to focus at work because of this weird headache. So I ultimately, after a few hours, tried to sleep it off, went to Urgent Care to try to figure out what was going on and they treated it for a migraine. I don't really I don't get migraines, but they gave me some medication for that.

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Unknown
I came home, wasn't really helping, but I just tried to sleep it off. I called around to some friends and they're like, yeah, migraines can be pretty bad sometimes. And I was like, okay, that's what this is. And, eventually I when I opened my eyes and looked at the ceiling, the ceiling was spinning like spinning wildly.

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Unknown
I got up to go to the bathroom and couldn't really walk, so I was crawling to keep my balance, and I ended up throwing up for like seven hours straight. Like every half an hour I would throw up and then I'd pass out on the bathroom floor. I was just curled up there, miserable, still thinking this is just a horrific migraine.

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Unknown
After long enough, I was like, I was getting pretty scared. So I went to the ER and, I'm in Bozeman, Montana. So they didn't have, neurologic specialists on call. And so the, the general doctor was like, we'll do some scans, we don't see anything. So we'll release you as long as you can do a walking. If you can just prove that you can walk.

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Unknown
And I still couldn't, I couldn't stand up. And I had double vision, like totally stacked double vision, eyes wide open, things are spinning and things are just like I'm seeing double of everything. After waiting in air for hours, I just so clearly remember her looking over my face, coming over, saying, we just called around. We spoke to some specialists.

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Unknown
You have an abnormal cluster of blood vessels in your brain stem, and we need to get you to Salt Lake City immediately. And my first thought was, I have a brain tumor, I have cancer, a brain cancer, like I'm dying. Like, that was my first thought. And so over the next two hours, they arranged to get me on to an air ambulance and on a gurney brought me out there.

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Unknown
I was on this personal plane with three EMTs and the pilot, and they flew me over to Salt Lake City, where they had a neurologist to help, care for me in this moment. So ultimately, what happened is this abnormal cluster in my brain stem. I didn't know that I had it and it bled. And so it was impacting some of the cranial nerves having to do with, like, my vision and sensation and it felt like wobbly and, unstable on my left side.

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Unknown
My vision was totally spinning and stacked. I actually lost my voice a little bit. It was affecting my vocal cords. I had a hard time breathing, so it was basically stroke like symptoms. And I'm 35 years old. Like I'm really healthy. I take care of myself. That was really, really rocked my world. And for about four weeks, it took, time to recover for my vision to recalibrate and get back to normal.

00:03:45:08 - 00:04:06:11
Unknown
I got like a stationary bike and just pedaled in the backyard so that I could get you know, exercise, even though I wasn't able to walk or drive or bike on my own. And after about four weeks with symptoms resolved, I was super happy about that, that I went back to normal because not everybody with this disorder does.

00:04:06:13 - 00:04:37:03
Unknown
But after that, I suffered some very extreme, emotional trauma related to it. And that's still something I'm coming to terms with. I've, done some therapy, like I movement, desensitization re reprograming eMDR to try to help me cope with the fact that I still have this little cluster in my brain, and it could bleed at any time, and they can't do surgery on it because it's in a very fragile place in the brain stem.

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Unknown
And surgery is very risky. So that's something I've been working on over the past year and a half, is really coming to terms emotionally with this diagnosis. And, I'm getting there.

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Unknown
Thank you for sharing that story, Casey. That is really crazy to hear

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Unknown
You're living this healthy lifestyle, and all of a sudden something like this happens, and you have no idea where it came from, right?

00:05:02:23 - 00:05:21:20
Unknown
Yeah. Yeah, I it's it can be a genetic disorder. Some people are born with like hundreds of these in their brain. Mine is not genetic. It's just this sporadic thing that happened. I don't know if I was born with it or if it grew over time, but it's just been lying dormant and it wasn't a problem until it ruptured.

00:05:21:20 - 00:05:36:09
Unknown
I'm curious the treatment you went under because you said surgery wasn't an option. What did I end up looking like? That's part of it. The emotional burden is there really isn't a treatment for it.

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Unknown
So there's it's actually just waiting and watching. So I get regular MRI's to just monitor if it's growing. But there's not a whole lot that they can do.

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Unknown
In the immediate time. When I went to air, they just gave me, and then when I was in ICU, they gave me steroid to kind of minimize inflammation and gave me some other stuff to make me comfortable. But they really didn't give me anything to, stop it or, you know, if you can't get it out without surgery.

00:06:04:20 - 00:06:11:20
Unknown
So there isn't really a treatment right now. And there's a nonprofit that I'm working with is they're trying to find a cure.

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Unknown
That's super frustrating to hear.

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Unknown
I can see how,

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Unknown
There's that emotional trauma that you're talking about. Me, having that fear. Yeah, it it's hard to explain, but I was, I was I am a very adventurous, bold, courageous. Like, I love traveling the world. I go to very, like, obscure places. And after that diagnosis, I. My whole world, my whole heart, I just shrank, I felt small, my world felt small.

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Unknown
Like, It felt like there was my future was a dead end. And so I just had extreme anxiety and fear on everything. Like I didn't think I could fly again. I didn't think I could go backpacking into the wilderness because, like, what if it happens and I'm, you know, far from civilization. So there are all these things that I love doing that I felt like I could never do any of these things again.

00:07:08:22 - 00:07:24:11
Unknown
But with time and I have worked myself back up to being able to fly domestically on shorter flights, I haven't worked myself back up yet to fly over water. But those are just little things that I'm overcoming with time. It it helps.

00:07:24:21 - 00:07:53:21
Unknown
Have there been any adventures that you are excited to go on in the near future? I have done a few small excursions, so I would do one small backpacking trip and that felt comfortable, but I I've always loved international travel, going to very like, you know, places that are off the beaten path where you might not even be very close to medical care.

00:07:53:21 - 00:08:11:19
Unknown
So that part is a little bit scary for me. I don't have any specific trips lined up, but a dream, bucket list for me is going somewhere in Africa and doing like a safari. That's something that I've always wanted to do, and the travel for that is very intensive. And then you're out, you know, in the wilderness.

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Unknown
So, it'll take some working up to, but I think I can probably get there in the next year or two.

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Unknown
Awesome. So what are you focusing on nowadays? So what was most important for me was getting back to my sports and my athletic like activities. I play beach volleyball regularly. I love cycling, road biking, I play soccer, and then I just got into pickleball and, I dove in super hard realizing,

00:08:40:19 - 00:09:03:24
Unknown
At one point, I felt like my life was over. And in that moment when I was in the first ambulance taking me to the plane, I remember thinking about my life like, well, if this is the end of my life, am I happy with where you know what I did? And I actually had a lot of peace in that moment of like, yeah, I did everything that I wanted to do.

00:09:04:01 - 00:09:22:19
Unknown
So that was a really nice acknowledgment and a moment that I had that not a whole lot of people will ever have an experience like that to really feel like you're facing death and then get another chance. And so for me, I'm embracing it. Life just as hard as I was before, but with more meaning now.

00:09:22:21 - 00:09:40:08
Unknown
So I spend a lot of time outdoors doing activities like that. That is an incredible perspective to have gained. I mean, the journey I'm sure was crazy to get up to this point too. Yeah, yeah.

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Unknown
One of the things that, was the most expanding for me too, is I used to be very reserved and introverted, and I was selective about the relationship that I had.

00:09:49:15 - 00:10:11:22
Unknown
I had very good close friends, but it was kind of a smaller network. And when I was in the hospital, I remember feeling like this craving for human connection, like I was talking to the nurses more. I was joking with them like I there was something about risking losing your connection to earth, wanting to, like, stay connected to human beings.

00:10:11:22 - 00:10:39:23
Unknown
And so since then, my life has blossomed a lot in that way because I've now extended my relationships, I've become much more extroverted, much more of a social butterfly, I think. So there. It's hard to say. Like, I'm glad it happened. I really don't want this thing in my brain, but the changes that have come from it, I'm absolutely grateful for it.

00:10:40:04 - 00:11:05:24
Unknown
So if you were to, I guess, package that perspective or that learning into advice to have to give to someone else, maybe that was as introverted as you were before. What would that look like or sound like? Yeah, I think I had a mindset that kind of a fixed mindset about my personality, that this is who I am.

00:11:05:24 - 00:11:08:19
Unknown
And I almost had a like

00:11:08:19 - 00:11:27:23
Unknown
I was I was confident that I'm an introvert and this is who I am. And this is like how I'm defined. And, you know, you take personality tests to tell you that this is who you are, but everything about you is subject to change. And environments can change it. Experiences can change it, and you can change it too.

00:11:28:00 - 00:11:49:18
Unknown
And so for me, I, I realized that I, I have control over who I want to be and who I was before this identity that I was tied to. I feel like it was holding me back, and it was this personal experience that allowed me to open my mind to that. Like, I don't need to be bad if I don't want to be.

00:11:49:18 - 00:12:11:08
Unknown
I can be whoever I want to be. And it took me, this person, this particular experience to really see the type of person I could become. And it just felt like it's opened so many more doors. So I don't think you should be so tied to this identity of who you are. Like, do you want to explore other areas of your personality and who you can be?

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Unknown
There's a lot of good that can come from that.

00:12:12:21 - 00:12:41:11
Unknown
I'm asking that because I feel like I'm. I resonate with the person you described yourself as. You used to be, like, just very introverted and, like, I feel like I don't need to do things because, like, oh, I'm just introverted. That's not me. So it's, it's really nice to hear that you are taking life by, like, the reins, I guess, and just going out there and doing your thing, because that's what I want to do.

00:12:41:11 - 00:13:03:02
Unknown
But then I always kind of have that voice inside me that holds myself back. So know it's like, yeah, I have to delve into I've started to read a little bit about Buddhism, and I think it was as part of my emotional recovery of trying to find now like a way to cope or a way to overcome with the, the trauma and that emotional burden of this.

00:13:03:04 - 00:13:28:07
Unknown
And one of the main messages there for me has been like, everything is impermanent, everything comes and goes. And so when I think of life and our experience here in that big, broad perspective, it makes all those little things that maybe were holding me back, like fear of public speaking or not being super confident, I've like just stepped into such a bigger role because I'm like, our time here is fleeting.

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Unknown
So just go for it.

00:13:29:09 - 00:13:49:09
Unknown
Thank you so much Casey for sharing your story. Is there anything else that you want to add to our audience? No, I think that's it. I really appreciate being able to share this. It's, talking about this is a part of the recovery for me. So, very much enjoyed being able to tell my story.

00:13:49:09 - 00:13:58:15
Unknown
And, where can people find you if they wanted to find you online and talk to you more? I'm mostly on LinkedIn and Instagram or the two platforms that I'm on.

00:13:58:15 - 00:14:00:20
Unknown
I'll also link that in the show notes as well.

00:14:00:20 - 00:14:01:21
Unknown
Wonderful. Thank you.

00:14:01:21 - 00:14:22:12
Unknown
Hi everyone. Thank you so much for making it to the end of the episode. If you live in Windsor, Essex County area in Ontario, Canada, then you should know that I host an open mic live storytelling event the last Saturday of every month at Alo Lounge on Erie Street in Little Italy from 5 to 7 p.m..

00:14:22:14 - 00:14:28:20
Unknown
If you don't know what open mic storytelling is, while I encourage anyone to come up and share their story,

00:14:28:20 - 00:14:37:10
Unknown
have different themes. Every month. The event celebrates connection, our humanness, our emotions, our rawness.

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Unknown
It gives us space to really express ourselves and to have people listen. Because I feels like

00:14:44:17 - 00:14:47:11
Unknown
we don't really get too much of this

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Unknown
anymore.

00:14:48:14 - 00:15:02:13
Unknown
It is essentially a gathering of the souls and sharing a little part of ourselves with each other, whether it be a funny story, a sad story, a happy story, a romantic story, any story that is yours

00:15:02:13 - 00:15:03:13
Unknown
you can share

00:15:03:13 - 00:15:06:18
Unknown
and I'm loving the community that is coming from this event. So

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Unknown
come to the event. I hope to see you there. You can purchase tickets at tales of the town aka.