Enter Label: On Becoming Glinda, the good troll in the HEALINGVRSE

Over the course of my experience with chronic pain post vaccine, but especially during the past 4+ months after Covid when things got ultra intense — with the electrifying swarm of migraines attacking every part of my head, neck and shoulders, 24/7, leaving me bed bound, riddled with an anxiety that threatened to erase me—I have had to wrestle with stretches of deep isolation. As Suleika Jaouad, cancer survivor, writes in her New York Times best seller, Between Two Kingdoms, a Memoir of a Life Interrupted:

Today as I prepare for a bone marrow transplant I've learned that my biggest challenge might not be physical. It is the enduring boredom, despair and isolation of being sick and confined to a bed for an indeterminate length of time. 

In my experience in isolation, I started doing some strange things online. I became a troll of sorts. With a maniacal force that bordered on vampiric for human connection, I opened my computer to access a world of people, human beings, and sometimes chat bots, and birthed a new personality, a good troll, like Glinda, the good witch.

Isn’t she precious?

I wasn’t discerning at the start. I had never really done the internet in this way before. I didn’t really know what I was doing but I was used to going to new schools. In my darkest hours, I came online to verify my existence. I wanted a biblical smoke to emanate from my screen, perhaps blown by a Hookah-smoking virtual caterpillar, spelling out You are not alone. Everything will be OK.

Sulieka writes similarly about her experience chatting online with another cancer patient who was in isolation at the same hospital.

My heart aches for Johnny, our shared experience was brutal but between us existed weird sort of beauty there. We were to complete strangers, arms extending from our screens, rapping each other in an intimate embrace.

The therapy apps got me going. I wanted a person who I could reach out to, at anytime, and express my sadness. I connected with a number of counselors on therapy apps. After careful selection I have been corresponding with a PhD who also has made a life of triumphing over cerebral palsy. I have written him insufferable messages of desperation, and for much of the summer he was my “go to” person in times of need. I can remember Saturdays alone in the city, heat sweltering, head pounding, time ticking by like it was waiting in a Burning Man style exodus line. Only his responses kept me connected, by a thread, to the world. He called me Warrior, he reminded me to breathe, he told me that if we saw what negative thoughts did to our bodies, we would never have them. He asked me to read the book he wrote on his experience with cerebral palsy, and I did, connecting to his suffering and perseverance with one click on Amazon.

I would never have signed up for one of these platforms in the past for so many reasons, not the least of which is a rich understanding of their security problems, but I just reached a point where none of it mattered. The notion of information being leaked, that somehow my sadness would hurt my future prospects seemed completely divorced from this urgent reality. Yes, all that mattered was finding a kind of virtual support system to get me through the hour, or day, when in-person, even telephone calls, were impossible.

Winston Churchill, if he were an Instagram influencer, might say, whether in times of war or isolation, the internet provides the portal through. I never understood the beauty of the Internet in this way. Despite its shortcomings, the addictive dopamine hits from the approval of photos and such, there is so much hope and promise in the HEALINGVRSE.

Upside, a book on the Science of Post Traumatic Growth, talks about the importance of bonding with others and the power of virtual support.

A 2008 review of studies of those using online support groups found that participants benefited from an improved sense of well-being, self-confidence, and control and that participation lead to a sense of increased empowerment.

I flung myself into the world of Facebook groups. For example in the Long Covid group, Survivor Corps, I posted a silly poem about my large desktop calendar that I use to track my milestones and healing progress in Sharpie. That thing is constantly falling down and getting sucked into the wall fan I use to drown out the jackhammering on the subway line by Hunter. To survivors in the group, I write back supportive comments.

Who am I? Is this the same person who tried to “fail” out of sororities by bombing all the interviews? Who was “too cool” for attending the college workshops during high school? Who didn’t mail in her photo for the freshman yearbook, because, that simply was not cool in my unwritten rule book.

I began to covet the live feature on social networks and apps. The first time this happened, I joined a large group of people (mostly women) via Isolation Journals, a creative community of people in isolation started by Suleika. It was July, and I watched the moderators talk on a blistering hot Saturday when everyone else in the world must have been ay the pool. I ate lunch to their faces before dragging myself back to my bed. I guess I had reached the point where the silence in my apartment was deafening. I could appreciate simply that people were here for an hour. I was truly comforted that indeed I was surrounded by voices belonging to people in real-time.

Television can teleport you out, but it does not have the added value of connection. A replay of live content also feels different, irrespective of whether you participate in the live event. There’s a restorative yoga and breath work live class on Tuesdays and Thursdays that gives me a schedule to abide by, it feels like a commitment etched in stone. When I join, I wave to my favorite instructor Dani Fagan, who also overcame chronic pain that had her wheelchair bound, and is a huge inspiration for me. I say a couple quips, if I feel up to it, and quickly switch off the video to settle into the class. In a matter of minutes, I feel as though I’ve made a connection, I’m with people without too much expectation. I feel a positive sensation from this, and a sadness when it’s time to close my laptop, just like one feels when saying goodbye to a friend in real life. Back to my room I go. Yes, I know, I never left.

I’ve scoured the internet for accountability partners who might be able to help me with journaling. I’ve reached out to people I haven’t spoken to in a years. Hey, hows it going? How’s Covid treating you? I know we haven’t spoken in a while, but I saw that one post, and I think I can relate…

I’ve joined emerging platforms like the Self Healers Circle, and reached out to people on there to support them in their journeys or ask questions. Mostly girls, all ages, with trauma experiences, and anorexia, and bad relationships, and some with pain, all doing “The Work” as they call it. This is literally the last place on earth you would have found me two years ago, and yet here I am stewing that the platforms does not have a good shape or structure to help foster the interaction of the community.

For invisible illnesses, for ones with a slow and indeterminate recovery timeline, you reach out into the sky and hope you come back with fragments of a cloud, an ethereal personality from Texas, or Maine. No, this behavior looks nothing like the approval I might seek on Instagram. It is trolling, but the good kind.

I’ve done Curable Groups, which is a weekly gathering of 10 people with chronic pain to work through materials related to mind body illnesses, and pain reprocessing. People hail from Europe, Canada, disparate parts of the US, and have all kinds of ailments termed mind body such as, digestive issues, chemical sensitivities, back pain, neuropathy, too many to recount. I did not enjoy the structured two hour zoom aspect of the conversation, but nonetheless it gave me a taste of “like minded people.” People learning how to heal from chronic pain using TMS strategies, which I write about here. People upended, but trying to get back. In some ways, because I joined just as I was in the acute throws of my Covid reaction, I was in the worst shape. I had Solonpas patches all over my head that I tried to cover with a baseball hat. But, many of these people had been sick for years and years and only just found themselves there.

As a founder of a digital company you would think I understood the power of the virtual world, and maybe that’s why I aim to harness it fully. But in the past my perspective was more from seeing the power of fan engagement, the power of influencers, the power of digital media to transcend boundaries. But in some sense, that understanding was an intellectualization. The internet became more than a business for me this summer, or a way to stay in touch, or a way to be resourced, it became something I needed, something that was part of my recovery, something that frankly, kept me alive. And it's changing who I am.

The fact is I never truly needed this virtual world before. My life always existed in person. For the company, fundraising happened over drinks. Talent partnerships were closed at coffee shops. Bars, restaurants and couches, were where you caught up with friends. But right now, it’s the forums, chat rooms, and comments sections where I make my impression. In a way, I practice socialization in isolation so I don’t totally lose the muscle. I’m learning what motivates people to respond to, and care about, a complete stranger. I’m learning about the shared need for connection at a visceral level. In one conversation, I may ask for help and end up giving help. I’m not sure I understood that kind of give and take before.

I’ve reached out to a crisis text support lines just to see if an automated system could comfort me. Spoiler alert: It was disappointing and made me wonder how many people it failed in a fatal way. In moments (correction: hours) of self-pity, I can hardly believe that I am having these experiences as a real user, not a researcher, not an entrepreneur. Later on, I may scoop out the entrepreneur hat or writer hat, the parts of me entrusted with holding hope, and reflect on that experience. Perhaps I can create something or be part of something beautiful that helps people.

I now have a friend on Facebook who was merely an acquaintance for years. To be frank, I’m not even sure how we met. And maybe calling us friends is a bit forward, but well, she feels like one. She has also been suffering from chronic pain since having her second child and getting COVID. We check in on each other from time to time. Sometimes, we simply send each other pictures of ourselves crying. At other times we motivate each other (go to the beach, you must live your life!), and sometimes we simply tell each other about that very dark feeling, so someone could register it without calling the police on us. Then we disappear for a while, and I can see from her wall that there are days she is doing better.

Don’t get me wrong. The HEALINGVRSE does not replace a real hug, or a true old friend checking up on me, or the beauty of the trees outside. But, friends and family alone cannot shoulder the burden, the burning thirst that is unquenchable for connection in isolation, which manifests at odd and unpredictable times, but with certainty. This desperation is fueled further by my anger toward the “in person world” for not loving me enough, for forgetting about me, only to realize later that I’m just frustrated at myself, for missing out.

And it’s also a different kind of connection. When you talk to your parents, there is a long history. When you talk to friends, there is a natural lead up, a back and forth as people with different trajectories attempt to share in life. Plus I want to be my best for them. People pleasing is a hard habit to break, a common trait for mind body sufferers. I have felt like I’m simply not going to be engaging enough, or funny enough, or I’m worried my head will hurt more, and I will be a huge let-down. At some point in The Abyss the mere thought of a telephone call had me shaking, and several close friends had to walk me through those anxious “practice” calls.

But online, it’s a different equation, a different quid pro quo. There’s a straight to the point nature. A culling. Who knows what the best supplements are for this? Photograph below. Has anyone received good results from the Covid Clinic? How are people managing their lives? Let’s do a livestream breath work session together, side by side, without ever knowing who you are, and then, we just sign off, no goodbye.

Of course, a lot of platforms and interactions fall flat. There are times you feel worse for the weather for trying, where you feel the flaccid nature of these relationships, when calling these relationships temporary would be a generous statement. Sometimes you can feel the “invisible hands” of the business side of wellness interfering with spawning real value.

No, it’s not a Shangha. It’s not a creative community for artists with disabilities that my sister’s friend joined and that helped her remarkably in healing after spinal surgery. This is something else though, it’s hit or miss, but like a skill, using the internet for such purposes can be honed.

Much love from the HEALINGVRSE,

Rebecca