A weekend surrounded by illness that left me feeling incredibly alive
(Photo cred: Amanda Crommett)
Someone I'd met through an EDS support network suggested something a few months ago called the Spoonie Collective. It's a retreat in the middle of nowhere for people with chronic illnesses to come together. My initial reaction was something like almxkdfj[oweicboawoief!!! I had too many conflicting feelings to even know what to do with myself. After a few days of thinking about it, I teased out a few things:
I was terrified of what it meant to identify with such a group
I was afraid of not being accepted (I had bad experiences in the past of not being accepted into groups that I identified with, and I still have a fear that I'm not really sick, that it's just in my head)
I was afraid of being judged by friends/family for going
I worried it might drag me further into my illness identity
I pictured 20 people too sick to do anything, constantly talking about their pain and wallowing in self-pity, but more importantly...
I felt horribly isolated and desperately wanted to go.
I totally freaked out and signed up. The closer it got, the more terrified I became of surrendering myself to a group of people I didn't know in the middle of the woods somewhere far from home without any of my support systems, but I also become more and more excited to be welcomed by people who really knew me on a level that even my closest friends and family can't. And most importantly -- they were going to COOK FOR ME!!! No more feeling stressed every meal! I didn't even have to pay for the food! This was going to be the best weekend ever.
And it was. A couple of weeks ago, I went. It was one of those experiences that completely changed my worldview, but in ways that I somehow can't put into words. The retreat took place at Zeno Mountain Farm (which you should look up because it and its founders are AMAZING in so many ways) and was organized by Suffering the Silence (also amazing, so look them up too :-P). The idea was to create a space for participants to relax, have fun, build community, and express themselves through a variety of arts, while having their needs met. This was so crucial. When experiencing fatigue, participants could just nap whenever, or use a spare mattress to lie down in the room with everyone else, to still participate if unable to be upright. Dietary issues were normalized beautifully -- almost all of the food was gluten- and dairy-free, and those of us who couldn't eat anything just filled out detailed forms and our ingredients were found locally and cooked fresh each meal by volunteers. Couches were available for those of us who can't sit in chairs too long. People experiencing migraines could wear sunglasses without anyone giving it a second thought. And the entire retreat was FREE so that those of us struggling to pay thousands of dollars in medical bills could have a weekend free of financial stress. All of the weight that I carry daily, the decisions I need to make constantly, were taken care of so well that I could simply relax and participate in ways that I haven't been able to in years.
Although not having to cook or stress about food in general was probably the best part of the retreat for me, a close second was the community that I found myself in. The people were absolutely incredible. I have never felt that free of judgement in my life, especially around strangers. Everyone understood shame and there was an unspoken agreement that this would be a shame-free space. The stigmas surrounding honest expression of emotion, that I normally feel so acutely, didn't exist there. I don't know if I've ever cried so much in one weekend, but it wasn't bad crying, like during bouts of depression when I've cried for no reason and it didn't feel helpful. This crying was a therapeutic release of things I've never felt safe enough to say aloud. I cried out of sadness, fear, anger, joy, connection, and intangible moments when someone said something that just felt so real to me, that they had put into words something I'd never been able to. As strange as it may seem, the crying was one of the best parts of the retreat; it felt amazing, productive, and made me feel whole.
One excerpt from my journaling that weekend sums it up nicely: "I am amazed by these people. I was so worried that I’d go and feel like I’m not sick enough to deserve this, or feel like we were dragging each other down into a pit of despair and pity. It it so the opposite -- yes, I can see our sickness because I know what to look for, but we are the epitome of invisible illness. Sure at any given moment someone is probably taking a nap, but when up and having fun, the group is so vivacious. We are excited, full of emotion and love, full of gratitude and perspective. I think it's because so many of us have been through therapy, or at least periods of solitude and self-reflection. It is a reminder that therapy is a wonderful gift that everyone should try; we can connect and feel and express so much more clearly in this community than the population at large. We allow room for tears, anger, and negativity. The overall feeling, though, in this group is an amazing amount of joy at just being together and sharing our mutual experiences. I can’t describe how rejuvenating that is. There is SO much laughter, humor, honesty, and sense of fun. Somehow it’s easier to connect and dive right in when I know I can leave at any moment to go rest, eat, lay down… take care of myself."
I clearly have a lot to say about this retreat, so I'm going to do a series of posts and link them in below as I finish each one: