For background info, check out my first post about the retreat. I journaled frequently throughout the experience, so for this post I've included excerpts from journal entries to give an idea of what the experience was like for me:
Day 1:
Arriving last night was everything I needed. It was a small enough group that I felt comfortable, but large enough to reinforce the powerful message that we are not alone. I had to arrive more than an hour late because I picked someone up in Burlington who was travelling all the way from Massachusetts. There are people from DC, CA, the Midwest, NH, all parts of VT… The camp itself is spectacularly beautiful. It is everything I love about VT -- views of the mountains from my bed, as well as most of the outside spaces. The trees are beautiful and covered in moss and lichen. The buildings themselves are crafted from gorgeous natural wood and speak warmth, accessibility, and architectural innovation. I was actually pretty blown away by the physical space, since my own camp experience, though wonderful, did not focus much on the aesthetics of the buildings themselves.
Anyway, after arriving late, I was hit with a wave of unconditional acceptance. Everyone immediately welcomed us with smiles, asking if we needed any accommodations, and jumping us into a name game. Sitting around the circle, I could see my people -- some sitting with loose hips, some slumping slightly, two wearing sunglasses (indoors at night), one with a service dog, and a couple of empty chairs for people who needed to nap after traveling. I can’t describe how amazing it feels to be surrounded by people who get it so profoundly. When I needed to sit on a pillow, no one batted an eye. When I felt the full-body twitches sneaking down my back, I didn’t worry about people’s reactions -- I just let them out and no one said a thing. When a few of us decided that we couldn’t handle sitting in chairs, we simply found a couch and brought it to the circle. Whenever someone expresses an experience or feeling related to chronic illness, you can see the wave of recognition and understanding reverberating through our faces.
The next part of the evening was the most exciting for me: dinner was served. I mean this quite specifically; I did not have to shop, prepare, cook, or serve my food. I simply sat at a table with people who truly felt like peers, and food that I could tolerate was served to me. What an incredible experience, to not have to stress about food and to have a communal experience during a meal. I have missed this terribly. During dinner, and during the laid-back shmooze time afterwards, we talked so freely/openly about everything. One person shared his experiences in rehab and recovery. Another shared experiences in a facility for depression. We swapped doctor horror stories and tips. The vulnerability that is so difficult to access behind people’s walls was immediately accessible.
Random observation -- even in this setting, it’s hard to not socialize. I know I need alone time. If I stay this high energy for too long I will crash later. But I also crave connection, especially now that I’ve found my people! And they’re so friendly! The retreat has even built in TONS of alone time, rest time, nap time, whatever… but there’s still that part of me that feels “lame” or unsocial, or less than in some way, to not use that time socializing. How is it that even in this context, it still feels sad to take care of what I need?
Day 2:
Sleeping in until 8:30 was a blessing. I woke up feeling thoroughly refreshed -- a strange sensation for me. M roommate woke up and had a look on her face that I know too well. I asked “how are you?” and she responded “Everything hurts and I’m dying.” We then smiled and went on with our interactions. THIS is what I want! To be able to be that real with everyone in my life. To be real, but then move on. If someone says “hey, how are you?” I’d like to be able to give an honest answer without being told I’m not being positive, or getting pity, or people distancing themselves, or trying to fix it. It doesn’t need to be a start of a conversation. You asked how I am, now I will honestly respond, and just let it be. I'm going to miss that, once this weekend is over.
Breakfast was a beautiful buffet, once again with foods that I could eat! Everything was organic and fresh. They found duck eggs and local chicken and made some simple oatmeal. After breakfast was an incredible workshop with a producer from The Moth. We listened to some stories, talked about what makes storytelling so powerful, and then worked on some of our own stories. As an avid storyteller myself, it was another reminder of why storytelling is so wonderful and helps connect people together. It felt amazing to enter one another's experiences for a few minutes.
Our afternoon activity was with a doctor in the area who is amazingly supportive of people with chronic illness (you’d be amazed by how rare that is). He first had us brainstorm words we associate with our illness, or names we might use to call it, if it were personified. I liked a lot of the words people chose: mystery, teacher, shadow, constant companion, Ethel and Fred… I chose Cloud. It seemed fitting for something that constantly looms over my head. Sometimes it can be beautiful -- if the sky is nothing but blue, it’s a bit boring, but add a couple of fluffy clouds, and it’s picturesque. For me, a little bit of discomfort can actually be wonderful because it reminds me to have empathy for others and gives me amazing appreciation and gratitude for the positives in my life. When not beautiful, clouds can be unpleasant and block out the sun; a bit worse and they can rain, dampening your day, keeping you holed up inside, canceling events; if they go too long without raining they can build up into a raging, destructive storm, but it’s usually quite calm afterwards. Added to all of this, clouds can also take the form of fog, which in itself is all too familiar to my experience.
Once we chose a name, we wrote a letter starting with “Dear ________, Here are some things I’d like you to know about me.” I really struggled with this. I took it to be one of those activities where I’d remind myself what I am like in my true essence, on days when I am not sick. I thought back to years before I really had to think about it too often, when I had energy and more good days than bad. It was nice to remind myself of my strengths and passions, but also felt cheesy and actually quite sad to wonder if I’ll ever be that person again. Once people started sharing, I realized no one else had taken it the way I had. Everyone else’s letters were stick-it-to-the-man, f*** you letters to their illness. They were more like “Dear ______, something you should know about me is that I’m not going to take this lying down. You can’t control my life” etc etc. There was a lot of humor, pain, and empowerment, whereas mine was a quiet celebration of myself, or reminder of who I can be when well.
The second letter he had us write was a letter from our illness to us. I was pretty pissed about writing it. It was weird how strongly I didn’t want to think from my body’s perspective. Once I got into it, though, it felt so much more real and cathartic than my first letter. I carry so much resentment towards my body that sometimes I need to remind myself of work I did years ago with a hypnotherapist, to see my body as another victim of the illness, rather than the perpetrator. Unfortunately the person who shared before me had a heartbreaking letter, I think about TBI, and I was already crying before I started to read. I decided that I needed it, though, and cried steadily throughout the entire thing, sometimes having to pause because my tears were so thick I couldn’t see. By the end of it, many people in the circle were also crying and we had a wonderful conversation about what I had written. It felt like I had bared the most vulnerable and scared part of my soul and it was received with a gigantic group hug (but without the physical hug, which I don’t like from non-family).
That evening, we worked on a group tapestry and shared incredible conversations about fatigue, doctor-induced trauma, judgement, medical bills/insurance, and then the vast variety of hobbies, jobs, passions and social-justice issues that we are involved in outside of illness. It was so wonderful to remember how rich our lives can be; even when consumed by the sick half of our identities, we are still rooted in our core selves.
Day 3:
I watched the sun rise on the mountains from bed. I had breakfast, then went to yoga. It was cool to have yoga that a) didn’t stretch or hurt my body and b) focused on meditating “inside your body” and finding joy in being in that space.
Later, the doctor led a second workshop with us called total embrace. We split into groups of three and each had a role -- participant, mirror, and observer. Jeff put on music to set the mood and each song change signaled a change in our experience. For the first song, the participant put their body in a position to represent their illness. The mirror then tried to copy the position and the observer gave tips of how to make it more precise. Once the correct position was assumed, the observer would motion for the participant to stand up and see what that position looks like to an outsider. They could walk around the mirror, look closely or from a distance, etc. About three or four minutes went by with the mirror experiencing how the participant feels about their illness, the participant experiencing what their position looks like to others, and the observer witnessing it happen. When the music changed, the participant began to alternate; they would assume the position to remind themselves what it felt like and then break out of the position to either shake it off and feel more themselves or to look the mirror to see it as outside them. This went back and forth for three minutes, and when the song changed yet again the participant interacted with the mirror in whatever way felt comfortable. They could speak to it, they could give a hug or do a silly dance, shout out some anger and resentment, comfort it, whatever felt necessary. All of this, of course, was witnessed by the observer. Once the 11 minutes were finished, we rotated roles so that each person could have each experience.
This activity felt much like the letter writing. At first it felt weird, forced, cheesy… but at some point I saw others getting into it and decided to just surrender and let myself feel all of the things I’d held in for months (or years). As soon as I made that switch, it was like the lights went on in my brain. Assuming my position as the participant immediately brought me back to thousands of times I’d been in that position before; having friends over in high school and being unable to get off the ground. Shopping for my husband’s wedding tux and having to lay down in the display window at Men’s Wearhouse. Over and over the memories flowed in and I was consumed by anger, sadness, regret, and a million other emotions. But it was beautiful. Seeing my mirror take on that form filled me with sympathy. I wanted to pull her up, comfort her, try to help her get more comfortable. She looked mangled and twisted and in pain. Coming in and out of that form helped me feel more alive, to recognize how well I felt that day. During the interaction phase, my mirror held my gaze and thanked me for letting her experience that form with me.
Perhaps the most powerful part of the exercise, though, was the observer. Both being observed and observing others felt so important. So much of chronic invisible illness is being unseen. I often feel simultaneously terrified of someone noticing, even putting extra energy into hiding, but then also desperately wanting my pain to be witnessed. I cannot describe what it felt like to witness others as they took the form of their illness.
The purpose of this activity, it turns out, was to access the duality of our experiences, just as we had with the letter writing, but in a visceral, kinesthetic way. We had accessed it through language and cognition, but now we were physically feeling it with others. It was profound.
The next activity was more time to workshop our stories. We shared ideas, practiced unfinished stories, and discussed the central question -- what do we want people to know about chronic illness?
My head was swimming. While many others were stumped, unable to come up with an answer, I was overwhelmed by the multitude of answers. I want people to know everything. I want them to understand how it feels every single day to be trapped in a life that you didn’t choose for yourself. I had no idea how to narrow it down into one cohesive story, so I generated a list of top picks:
Living in two worlds, the life you live during stretches of health, and the one consumed by illness. Some people with chronic Lyme talked about this, (and Allie did her story about it!) that they wished they could remember what health feels like when stuck in the illness world, and also wish they could remember to take it easy when healthy, because they often propel themselves back into illness by overdoing it when feeling invincible. They wished they could touch both worlds at the same time. My situation is a little different -- I am almost always touching both worlds. My terribly ill spells only occur a few times a year, and are typically short-lived. But my very healthy periods are also few and far between. I alternate between worlds on a day-to-day basis, sometimes even hourly. I have so many different symptoms that a single moment could be both sick and healthy -- my stomach might feel great but my joints terrible, or my energy is good but gut sucks. On the average day, I am healthy enough to technically be able to do anything I want, but anything I attempt could easily plunge me into having a bad day. My entire existence is spent teetering on a tightrope; lean too far into the world of health and I will make myself sick, yet if I lean too far the other way and wrap myself in how bad I feel, I lose track of who I really am and stop being able to live a full life.
Moments when you can really own who you are and what you’re dealing with -- I’ve gotten pushback from myself as well as those around me when I dip too far into one world or another, so I wanted to tell a story about those few moments when I felt fully rooted in owning my situation
Openness in general -- I wanted people to open themselves up to hearing more from spoonies. In education, there’s a concept called universal design. The theory is that we shouldn’t just make accommodations for people with “learning disabilities” because we’re othering them and also not benefiting the group as a whole. If we recognize that everyone has learning differences, and give options or speak openly to the whole group about different ways to learn, then we’re benefiting everyone without even having to go through the work of making a series of accommodations. Keeping our stories quiet or segregated is not only isolating us, it’s also not allowing the world at large to learning from what we can do. I was blown away at this retreat by how creative and innovative our problem solving can be, out of necessity, and realized that everyone could learn a tremendous amount by hearing what we do to stay standing.
Relationship with food -- my diet is an incredibly visible part of my otherwise invisible condition. I hear all kinds of reactions from people, most of which make me uncomfortable, because no one really gets the full extent of what it means for me. I will be doing a whole post on this later, because it’s huge for me, and seemingly a pretty common issue for people in chronic illness communities. (posts on this here, here, and here)
Affirmation and belief -- most of us had experienced time and time again when we were blatantly not believed by doctors, friends, family, coworkers, etc. It does horrible things to the psyche when you start to wonder if they’re all actually right and you’re crazy. I wanted the audience to understand how powerful it can be to simply tell someone you believe that what they’re feeling is real.
How much to share -- one storyteller confessed that, for awhile, every time he introduced himself he would say “hello, I have a chronic illness, so you might need to save my life someday.” It’s hard to know what the right balance is in each moment, situation, person, etc. I’m sure I get it wrong most of the time, and I’m still not sure whether to air on the side of honesty or keeping it to myself to not make others uncomfortable.
Balance between self-care vs. really living life -- how sick do I let myself be?
The effects of photographing my food (I will post about this later!)
Re-defining positivity -- it can be incredibly powerful to view the world through bright spots, but also when your world is full of discomfort, it’s important to be able to express sadness, fear, etc, without feeling shamed by a world that values positivity
Discovering the term “spoonie” -- having language to describe how I feel and a community that understands
Ultimately, I chose something else, not because I cared about it the most, but because a story quickly came to mind that could illustrate it. I carried two themes throughout the story -- redefining my perception of “normal” (tricky with genetic diseases) and the frustration of not being able to get the answers I needed. The process of sculpting this story was quite powerful. I sifted through many anecdotes to find what fit, and did a lot of processing along the way. Although the story I told was not exactly as I had practiced it (there was an funny irony of performing memorized stories with a group of people who experience brain fog), it felt amazing to finally be heard by a group of strangers. There was a surreal energy in that room and I felt deeply understood.