Sharing the Pain
Life Rebalanced Chronicles Season 3, Episode 8
Struggling with a vestibular disorder is life altering. For Etta, when she was too sick to get out of bed it changed the life of both her and her husband Mike. The journey of adapting to life with a chronic condition was shared between Mike and Etta.
TRANSCRIPT
VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Etta
You know, we were just, we were a normal everyday couple. We did everything together, we did outdoorsy things together, we went to the gym every day, you know, we were we would socialize like with, you know, the same group of people. Our main goal was just to work and be happy. Travel.
Mike
I had a just normal nine to five job. And then on the weekends, I was a sound engineer. My other hobby was surfing, you know, working out trying to stay active and just just living the normal, regular life.
Etta
Our life changed instantly. And we had to completely rebuild everything our whole life. I woke up one day, and I was minorly. Dizzy. It was a little bit like, what’s this? Like something? Something’s not right. And after a few weeks of being like that, of just having this sensation inside of my head, I started to worry. And I started to panic.
Mike
The first thing I did was like, Hey, let’s get you to a doctor and like, see if they can, you know, get you some medicine just to calm down because their anxiety was out of control where of
Etta
finally I went to my primary care physician, I went to her office, no without an appointment, hysterically, crying, hysterically screaming, and I told her, I said, I think I’m dying. I said, I think I have a brain tumor. I think I have a mess. Or I think I’m dying. I think there’s something very, very wrong with me. And she ordered me an emergency MRI. She called me and Mike was with me. And she said, you’re fine. And I said, that’s, that’s not possible.
Mike
You feel like helpless, because you’re just like, well, nobody knows what’s wrong. We have no course of treatment, like there’s nothing they can suggest to even help the situation. It’s just a complete mystery. So you aren’t you feel, you know, helpless and hopeless.
Etta
There’s no brain tumor, there’s no ms. There’s nothing like that. So like, that’s it. So we know that. And then I started to calm down. And things improved after about a month. And then on January 5 of 2020, Mike had left the house to go to the gym. And as I was doing laundry, I got extreme vertigo, and I dropped to the floor, completely dropped to the floor. I began vomiting immediately. And I couldn’t get up. My heart was beating so fast. I felt like I was having a heart attack. I don’t remember getting to the hospital. I don’t remember anything.
Mike
And I you know, I thought all right, she’s gonna be in here for a while because she’s pretty, pretty messed up. So I was like, let me go home, situate the dogs and then come back and get ready for like a long night. And when I got back to my house, she called me and she said, there, you know, we’re done there. They said, I’m fine. So they’re discharging me. I was like, okay, like, what? So I got back and she was a wheelchair and I took her home and it was the most confusing thing ever.
Etta
Who do I call? Who am I? Like, who am I supposed to see about this? Like, where do I even you get in the morning, he would make sandwiches for me. And he would lay them out on the bedside table. And he would put fruit there. So everything that I needed for the day had to be within reach.
Mike
And all I knew was this girl can’t get out of bed. I’ve got to go to work. I got to you know, come home during work, take care of the dogs and go back to work. You know, get food like keep everything going. I literally had no time to like, even like sit and think about it.
Etta
He would have to help me shower like he would have to sit. He would have to sit in the bathroom with me. While I sat on the floor of the shower stall. He would have to help me put my clothes on he would have to help me walk. I couldn’t go downstairs. I couldn’t Do anything I would just sit there. He lost me as a partner. And he lost me as his best friend. My world became so small, I didn’t know anything else at the time. But Mike still had to live in this big, huge world. And I gave him all the space that he needed, I give him the options leave, he obviously didn’t leave. But, you know, I made sure that he knew that whatever he needed to do to get through these hard times, that it was okay with me. You know,
Mike
people, they would ask me how you doing? How are you feeling? I’m like, Well, I mean, I feel fine, but edit doesn’t feel fine. And that my focus was trying to take care of her and help her to get better.
Etta
It took from the time that I dropped to the time that I finally got to a doctor, I went to an e and t was 13 days. He said, I know what’s wrong with you. But I don’t know what to do about it. And I said, What’s wrong with me? Please tell me. He said, You have vestibular migraine. And I said, what is that? He said that there’s a specialist where we live. So there’s a specialist in Charleston, South Carolina. And he said, I can put in a referral for you. But it’s going to take up to six months. And he was not wrong. I went on online, and I read as much as I could. And I went to social media, almost immediately, to start trying to find people that had also had this because I was like, these people are going to need to tell me what to do, gave
Mike
her a lot of relief to hear someone else talk about their symptoms that matched exactly what she was going through. So it gave her a little bit of hope, like, alright, you know, there’s some people out there dealing with this, you know, I’m not crazy, like, this is real, and, you know, other people are experiencing the symptoms. So that that helped us a lot to be like, alright, well, let’s, let’s keep digging and researching. And
Etta
he was so good, he would just come home and sit with me on the bed. And we would just watch these videos, one right after the other. And we would just go through all these people on social media and reach out to them. And we were both in just survival mode. After seven months, I did get in with a specialist in and he confirmed my diagnosis. It was a relief to know, but he also confirmed this isn’t, this isn’t going to be a quick fix. And after that was whenever things started to get really dark, and I realized this isn’t going to this isn’t going away.
It’s really difficult, like because I think to myself, like I’m gonna have to deal with this on some level for the rest of my life. And sometimes I like I’m okay with that. And then other times like this, where everything just was like flared up and having so many symptoms, it’s just so
Etta
like, I started looking into options of ending my life and making arrangements for him after and I thought I’ll just go to Switzerland and do this and figure you know, and, and do this in a in a semi like, peaceful way. And he, um, he said, Well, we’re not going to do that.
Mike
Let’s work on a, you know, plan to get better. And let’s try some stuff before we just say okay, well, let’s, let’s just end it. So
Etta
I said, Hey, I have nothing left and me it’s gone. Everything that I had left me is it’s over for me. And he said it’s not it feels like it but it’s not. He called a priest to come to the house. And that was something that I was pretty against. And I said no, I don’t want to do that. But we got an orthodox priest to come to the house. He spent a long time with us really talking to us about, you know what it is to be sick? And what that means and how this just happens. And you didn’t do anything to cause this. And if it was your time that would be over. When I said, How do I not know it’s over right now, because you’re sitting here breathing. That’s when things change things. Things started to slowly slowly turn around. I sat in my bed and cried for an entire year hoping and wishing that I would wake up and be the same person that I was before. And I had to realize that’s not happening. But
Mike
don’t worry about or think about how it used to be and you know how things used to be normal. Now, this is our new normal, and we just have to live with it and accept it.
Etta
But it’s not a bad thing. It’s okay.
Mike
To see someone slowly go through the healing process has really turned me into a compassionate person. seeing this happen to her really changed the way I look at things. And a lot of people would be like, Oh, this person’s crazy. And they’re just making it up. And, you know, now I realized that we got a lot of people aren’t making this up. They don’t want to be at home sick. They’re not doing it on purpose. And that’s what changed a lot for me.
Etta
I was able to go see Katy Perry. And I was crying the whole time. Because I was like, I cannot believe I went from being in my bed for a year, and not leaving my house, to being able to stand in this room. In Las Vegas, watching world class entertainment. I always like don’t give up guys because the life that you can have can be incredible. Again, it can be it’s not going to be the same. We got a lot that goes. That’s gotta go. But it can be incredible again and for me to be able to do something like that. I was like, I’m 41 years old crying at Mary concert, but like this is such this is such a big deal for me to be able to do this, you know