9. Chronic Wellness in a Bus

About this episode:

In the thick of her ongoing battle with Ehlers-Danlos syndrome, Jenna Z climbed out her window barefoot and road tripped across the country to seek chronic wellness and peace of mind.

Follow her adventures on Instagram at @highspiritsjourney.

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For more information on Wander By Proxy, read a transcription of this interview, or contact Leah Falyn, visit the website at wanderbyproxy.com.

Thank you for listening!

Transcription:

Leah Falyn: Welcome to season two of Wander By Proxy, a podcast featuring women’s travel stories that connect them more to themselves in the world around them. I’m Leah Falyn and today we’ll hear from Jenna Z. She lives in a converted school bus in Colorado. But before that, she took the ride of her life in the thick of her battle with Ehlers Danlos syndrome. Here’s Jenna. 

Jenna Z: Ehlers Danlos syndrome is a genetic connective tissue disorder and it affects like, All of the systems of my body. So my joints can dislocate very easily. I have digestive problems from it. I can faint because of it because it affects the veins and the valves and everything. That’s the main thing is a lot of chronic pain is something that I have to deal with all the time.

And a lot of sensitivities to life itself, it seems like. , and I was only diagnosed with that fairly recently, about five years ago, but I’ve been dealing with the symptoms for about half of my life now.

there was so many years of seeing all sorts of doctors and specialists and just people shrugging their shoulders and saying, we did the same test that we already did on you. And we didn’t find anything. So it must be stressed.

It’s like, yeah, I’m stressed because I’m miserably sick and nobody’s. Doing anything significant to help me. So, yeah, that, that was a really big thing in my life for a long time. It still is. But, , having a diagnosis doesn’t change anything other than like a confirmation that I’m not crazy. And my body is actually doing all of these really strange things.

 at the end of 2017, , like November, December, I started getting really, really sick and with my health conditions, as they are having these chronic health problems, , I have auto immune issues. And when I get sick, I get really sick. So the end of 2017, I was having these seizure like episodes and excruciating pain and loss of function of my limbs and my body.

And it just kept getting worse and worse and worse and worse. , There was months of this, where I was completely bedridden. , and I was disoriented. I was confused as an excruciating pain. Nobody could figure out what was wrong and it was a mess. It was a very stressful mess for everyone involved. Everyone who’s caring for me, everyone who cared for me and just.

Existence itself was nuts.

  so I had written some journal entries after I left and a piece that really stuck out to me. I wrote I’m so disoriented. So confused. Why am I doing this? Why am I doing it alone? Because I have to, because I must follow this path where it leads me. I can no longer be influenced by the minds of others.

This is my journey. I parked my car outside of a Walmart in rural Pennsylvania, got out and shakily painfully stood on my own two feet for the first time in a long time. It’s not just a metaphor. I was quite literally bedridden for four whole months proceeding this moment, having to slowly and painfully watch as my body disintegrated before me and my soul tried to shrivel up and die.

I don’t know what exactly came over me, but fueled with adrenaline. I left the place where I was being cared for and took off on a ride from my life across the country. The mantra that stuck with me was I have to have things to look forward to. So I’ll keep moving forward. I did, I found so many things to look forward to.

I found help from friends and strangers alike. I found something within myself, but I had already lost, I found peace on the road and I witnessed some of the most beautiful parts of what it means to be a han on this earth. And if you had told me any of this was possible, while I cried out in agony on a foam mat on the floor a few weeks prior, I might not have heard you.

And most certainly would not have believed you. This trip was a lesson in trust, trusting myself to get through whatever came my way. I trusted my intuition to get out of a place where I was being covertly abused, and so much healing was possible in that space. I found. Driving alone, down a seemingly endless highway.

Leah Falyn: Wow. I want to know more.  so the right of your life, where was your first stop and where did you go from there?

Jenna Z: my first stop was.  that Walmart in rural Pennsylvania, , my, my Oregon’s, it felt like they were crushing under their own weight. And I taught myself to drive with my left foot because the right one stopped working.  and I was headed West.  , so I spent a night in Pennsylvania in a hotel. And from there I saw a snow storm was blowing in soon.

So I left the next day, drove for nine hours through Ohio in Indiana and arrived in Chicago for the night. On my way there, I had remembered a friend flesh acquaintance, who I had met when I was living in Miami, whose mom was a doctor in Chicago. And I reached out to them and was able to get in contact with dr.

Isabelle. She’s just this magical healing woman. And. She agreed to meet me. When I got out there, she came to the hotel where I finally made it after all sorts of loop dealers and potholes and weird Chicago roads. She came to the hotel that night, took one, look at me and said, you’re not going anywhere.

I’m going to treat you. And I wound up spending close to three weeks in Chicago, , getting all sorts of treatment, like cold laser therapy and acupuncture, , after receiving acupuncture from one of her, her own acupuncturists, , it was a six hour session and. I went in all twisted up with my legs, like this purplish blue color.

And when it was done, my legs were peach colored. And like, I felt like I was a corpse reanimating back to life. It, it was, it was wild. And I really like for the first time, got to recognize these really powerful female healers.

I felt a lot less alone.

There was the four months on a foam mat on the floor in excruciating pain. , my partner at the time was with me day in and day out, not taking any breaks and my family was trying to be supportive, but also just dealing with the stress of the whole situation and their own various strange ways.

, and my partner just hit a breaking point and, , he, he got violent and then he left and I was there, left with my mom and her friend taken care of me who were in their own space and need appealing. And, , I just knew that I needed to go. Aye. Aye. I felt like there was nothing left. I was absolutely ready to die. And I’m an old friend who lives in Portland now reached out to me out to me, kind of out of the blue. On the same night that I was trying to end things and he told me, come out here, I’ve got you just get here and I’ll do what I can to help you.

And next day I climbed out of the very low window. And left with no shoes and the spare key to my car.

Leah Falyn: Wow. What a way to get away from your situation. And how does your dog factor into your life? 

Jenna Z: she plays a huge factor in my wellbeing. Just overall. She’s. Trained as my service dog. So she creates so much more freedom for me to be able to go for a hike and have it just be the two of us and not have to worry that what if something happens and I’m alone.

Cause I know that she’s there and she knows what to do in case I faint or have another emergency, she can help me up. She can try to wake me up. She can go get help. And just knowing that she’s there really, really helps to allow for that freedom to move around and just be in my life without eating another person to do it.

Leah Falyn: That is powerful and a great companion.  So tell me about your school bus a little bit.

Jenna Z:  Three years ago, this August marks three years was just insulation and flooring and nothing else futon on the floor seems to be, yeah, a theme. So I’ve been living in it for about three years now and it’s come a really long way. I’ve taught myself how to run electrical and I put in a solar system.

I taught myself the basics of plbing and I have water tanks and running water. I’ve been learning carpentry. I’ve been working on cabinets in there.

After I left Chicago. , I was still very weak and still in a lot of pain. , my brain was still swollen from encephalitis. That was what had actually caused that long spell of being bedridden and in such a messed up state. , after I left Chicago, I was just a little bit physically and mentally better and able to really start to be present with myself and what was going on.

And there’s this moment driving through Iowa of all places. There’s all these places. And in the United States that we just like breeze right over, don’t even think about, but like actually being there. There’s this magic in the land. And like Iowa was just so pretty. It was like this, this patchwork of these farms that are all trellised around the Hills and everything was this fresh green of early spring.

And the clouds relieving these great little abstract shadows scattered across the landscape. And I remember just like bursting out in laughter and happiness and like really feeling like, wow, like I’m here.

So I, after I drove through Iowa and Nebraska, I wound up in Colorado and stayed with a friend in their apartment for about two months. And did a lot of killing them, spent a lot of days just sitting in Barnes and noble reading books too, and two months.  Then I continued my way West and got to see a little bit of Utah, which was another one of those places to me like Iowa, where it’s just like, Whoa, where did this come from?

Like this Utah was just. Wild. Like I had no idea to expect that kind of landscape and this almost like a spiritual feeling that comes with the lands and how ancient all those geologic features are. Mmm. And all this time I was, I was walking with a cane still. But a friend of mine took me camping for a weekend and we went to Bryce Canyon and I got to see the hoodoos up close, like just hobbling, very, very slowly down.

And from there I made my way out to Portland. I spent, , two or three weeks out in Portland and. Did a lot of like just walking around parks and trying to do what I could to continue strengthening my body and to get back to being able to move again. , from there I went North and visited a friend in Washington and then to Montana and spent another week or two with a friend who’s out there.

And from there made my way. Back down to Colorado. And then I flew back to New York where my bus was at the time, my bus and my dog and my partner. And we all drove the bus back out to Colorado in September of 2018. So I’ve been in Denver since then in and around Denver since then.

Leah Falyn: What have you learned from that? And what have you taken into your present situation or your current mindset?

Jenna Z: I learned that things will always work out and regardless of what we had in mind, things will always work out. , I learned that there’s a lot of kindness in the world, especially from strangers. There’s a lot of weirdness too, but predominantly kindness and that by allowing myself to be vulnerable and to be open to sharing what’s going on for me, that.

It resonates with a lot of other people too. And it, it opens up a deeper level of connection and communication and understanding between people. And a lot of people are going through things that they think nobody else is, or nobody else would understand. And just by opening up it. It reminds me and it reminds us that we’re not alone in whatever we’re going through.

Leah Falyn: Thank you for listening to Wander By Proxy, you can check out Jenna‚Äôs school bus adventures on Instagram @highspiritsjourney. The tag is in the show notes. Don’t forget to subscribe, to Wander By Proxy. We have an amazing lineup of travelers coming every other Wednesday, wherever you get your podcasts.

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