PRISONER IN OWN BODY

Written By Regina Sën (she/her)

(8 min read)

On May 7th, 2019, I emerged from nearly 13 years of tortuous suffering on the other side of NeuroLyme, inhaled the air of a fresh spring day, and celebrated BEING FREE. Free from torture. From pain. From years of suffering.

On January 28th, 2020, my oldest came into the kitchen with a jaw-dropping discovery. Aspen (they/he) had been working on the Chronically Thriving edition of an Award-Winning Triumph Program which helps people going through extreme adversity find their own triumphant path of meaning and purpose through it all. While editing a section describing the losses of becoming an actual Prisoner, including the loss of career, family, friends, freedom, and more, They were shocked to discover how little we needed to change for our own edition.

“Having a chronic illness is like being a prisoner in your own body!” Aspen exclaimed. I’d never thought of it this way before. This was an epiphany for both of us. In the very moment of our pondering, I suddenly experienced the strongest feeling to check in on a woman I’d never met and had only spoken with over text—nearly 2 years 

With Wren’s (she/her) permission, I’d like to bring you into our conversation. This is raw and vulnerable. If neuroLyme wasn’t such a catastrophic illness, and if treatment to get relief was actually available to all, this story would not even exist to be told. 

Regina

Hi Wren, You have totally been on my mind today. Call me:) 551-555-5555. I’d really like to catch up and know how you are doing.  JAN 28, 2020, 8:13 AM

Wren

Things aren't going well for me. Thanks for thinking about me. <3

Regina

I had a feeling this might be. I’m really so sorry. Is it continued or worsening treatment by your mom? Or is it physical lyme/coinf symptoms? Or both?

Wren

The Lyme is getting so much worse. I'm sick all the time. I barely move now.

Regina

Oh geesh. I’m so sorry! Did you find an LLMD to find out what co-infections you have?

Wren

No. I gave up. I'm just done. Waiting to die at this point.

My mom is not with me anymore so at least I'm not being hurt by her anymore.

Regina

Are you on your own then, I mean how do you pay for shelter? Food?

Wren

Yes. It's only been a few days. I still have a little money and my food benefits, but that won't last too long. I don't really care.

Regina

I ended up alone back in Oct 2018. I hadn’t driven in a year—and couldn’t shop, cook or clean without extreme suffering. Put me into a state of complete despair.

[Wren was sounding so down, I wanted to share a few entries in my journal to give her hope.]

Wren

Oh, I'm sure! How awful.

Regina

Never thought there was anything worse than suffering into the realm of the inhumane in body.

Wren

Right. It's like being trapped in a prison of your own body.

Regina

This is crazy...what you just said about it being like trapped in a prison of your own body...that’s exactly what my daughter and I were talking about when I had the strongest feeling to call you.

Wren

Wow. Amazing.

It feels like we're linked.

Commentary: Stunned by the connection of our stories, I felt impressed to share with Wren what had happened in my life since the time we last talked. I shared with her about Emily, a stranger from Arizona, who got me out of suffering by supporting me and doing chores that would put me in torture if I tried to do them myself. She got me out of survival mode, and I soon realized that many of my worst symptoms, like irritability, numbness, focus issues, tremoring, dry heaving, and muscles tied up in knots weren’t caused by Lyme at all, but by pushing my body far beyond its natural capacity. Wren agreed with me, so I challenged her to test the theory for herself. The theory being that if you get a woman out of survival mode, she can heal. 

Wren

I think you're right.

Regina

Do you want to test the theory?

Regina

I am laying the groundwork right now to renovate my house into what I hope will become a nonprofit called “Emily’s Place” someday it’s going to be for single women (and children, if they have young ones under eighteen) who are abandoned while debilitated. I want to do for these women, what Emily did for me.  

Wren

That sounds fantastic and brilliant!

Commentary: But Wren didn’t tell me if she actually wanted to try it out. So, after a day with no response, I said: 

Regina

Hi Wren, what was your life like before you got sick?

Commentary: I normally would never ask someone who has experienced so much loss this question. Yet, the question popped into my mind out of nowhere with the strongest feeling that I should ask her, so I did.

Wren

Oh, sorry. I've been sleeping a lot. I didn't mean to ignore you. I am a wildly different person now. I was super active and I just can't do anything anymore. I guess that's why I have such bad depression. I used to work as a university teacher. I volunteered for everything from fun runs to food banks. I was part of a fencing club and skated roller derby. I'm nothing now.

FEB 1, 2020, 11:58 AM

Regina

You are so very well educated, and have achieved commendable success in your life.

Wren

Yeah, I had a good life once

Regina

So, Would you like to come? We would do all we could to help you rest, including meals you are able to eat, laundry, shopping, and set up on Oregon Health Plan.

Wren

I don't think so. I wouldn't impose myself on anyone. No one wants to be around a sick person.

Commentary: Wren wasn’t making this easy, but I was determined to get her to come. I just knew I could help Wren get out of the dark place she was in

Regina

This is an invitation with all my heart. And one extended with absolutely no strings attached. Let me do for you what Emily did for me. My vision for Emily’s Place is for it to serve women of all races, religions, gender, and sexual orientations.

Wren

That's wonderful. I actually assumed you'd hate me because I'm an atheist. This is a lot to think about.

Regina

I would be happy for you to come and respect your boundaries. As I would a Catholic, Hindu, Muslim, Buddhist, Mainstream Christian. I hold sacred the life journey of all people

Wren

That's great. I wish more people did.

FEB 1, 2020, 11:58 AM

Commentary: She didn't commit to coming. so after a few days I followed up. 

Regina

I have someone coming on Monday for 8 hours to clean everything downstairs thoroughly. This evening I have a meeting with The Relief Society, and I’m going to tell them about the needs I have for furnishings to see what help they can give me to put together a warm and inviting and peaceful room.

FEB 3, 2020, 9:36 AM

Regina

And I want to be conscientious to prepare food that you are able to eat. Can you send me a list of things that your body doesn't tolerate? What do you like? What do you hate??

FEB 4, 2020, 4:56 PM

Wren

Oh, I just don't think I can travel right now. I don't move well at all.

Commmentary: After this, I video-called Wren so I could talk her through the process of going through the airport. I advised her to get a pair of Shooter’s headphones to block out sound, dark sunglasses, and an attendant to wheel her from car to plane. FEB 4, 2020, 4:56 PM

WREN TOOK A DEEP BREATH, UNABLE TO COME UP WITH ANY MORE EXCUSES, AND DROPPED THE BOMB

“I have to level with you; I should have done it sooner. Two days before you called, I already made peace that when my money runs out at the end of the month, it’s the end for me. I’ve suffered too long, and been beaten down too much. I’m just DONE.”

I started crying.

“I don’t want you to feel bad,” she said,  “it’s really okay.”

“It’s not that,” I said, “I just know if you come here that you won’t feel this way anymore”

Commentary: Wren‘s lips tensed together, and I could tell from her expression she was ready to shut me down.

So I continued before she could stop me, adding, “I Imagine that most people think I got out of survival mode because of the things that Emily physically did for me, but what really got me out of survival mode was how much she cared about me. I wasn’t a burden, and I didn’t feel resented. Most importantly, she believed me and wanted to understand what I was going through."

That’s when Wren agreed to come, and told me that ten years ago, two months after earning her PhD, she’d gotten blind-sided by the debilitating effects of Lyme. After she tested CDC positive, she was given a script for 28 days of Doxycyclene. According to the AMA, all it takes is 28 days of antibiotics to be cured of Lyme Disease.

But that didn’t work for Wren.

It didn’t work for me, either, or for the Stanford Doctor who diagnosed me nearly a decade ago. But the AMA hires attorneys to track down and disbar any doctors that break protocol by offering the long term antibiotics that brought us relief and remission.

The cost of Lyme doctors, which is not covered by insurance in the United States, can exceed $400 per visit. This was prohibitive for Robin. Patients have been known to spend more than $20,000 trying to get well. They mortgage homes. They go bankrupt. Many, like Wren, simply LOSE HOPE.

TWO WEEKS before I had the strongest feeling to reach out to Wren, back on January 14th, I had an experience that filled me with joy. The Lord revealed his will for my life...that he wanted me to do for other women what Emily did for me! For women of all races, religions, sexual and gender orientations. 

Wren recently shared with me that if I had not told her this second part and that also that I held sacred the journey of every person she would be dead right now. She’d been the focus of persecution by “religious” people nearly all her life because she stopped believing in God. She just couldn’t deal with that on top of trying to fight Lyme.

AND SO ON MARCH 27TH, 2020 when businesses were shuttering down and people were sheltering in across the globe, Wren left Iowa quoting Alexander Pope, “Hope Springs Eternal In The Human Breast.”