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On this site I tell about my life as queer with a chronic illness. As a passionate storyteller, I exchange information with striking examples and personal experiences. Hopefully you are able to better empathise with my situation. And with that of many others...

Living with ME/CFS is… A black-out by brainfog

Fog. Photo by Katie Moum on Unsplash

I recently had to give a workshop. To be able to do that I brought a box of stuff with me, which fitted perfectly under the seat of my wheelchair. Ideal, because that way I had my hands free to wheel.

The night before I had everything ready, so in the morning I lash that box under my seat. No problem at all, because it is not difficult and moreover I had done that before.

The day is going fine. My workshop is going well and it leads to a number of interesting conversations afterwards. In short, I am satisfied.

Recognition combines strengths: strength in numbers

Logo Pagan Federation International (PFI)

2nd online meeting PFI-NL Disability Network successful

We know that many pagans and heathens with a disability or chronic illness run into walls. Because it is very frustrating if you can't access the meeting that you really wanted to go to. Because you can be very lonely in the middle of the circle, sitting on a chair, while everyone is dancing around you. Because it is uncomfortable if you’re following the ritual only half, because you can’t hear the speaker(s) well enough. Because it is very painful if others don’t understand what you need to feel safe at an event.

"Your sex" - a vague question!

Sex: title, hormones, chromosomes, juridical, genitalia, gender identity.

Many non-binary transgender people are extremely annoyed by the fact that you have to state your gender everywhere. For those who don't feel a man nor a woman, this is an impossible question to answer. Similar to a question like "What is your favorite colour?", and the only options you can tick are "green" or "orange". But your favorite colour is blue. Not nice!

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Gender & identity

Man - woman - roller (source: <a href="https://shop.spreadshirt.nl/wheelchairmafia/geschikt+001?idea=5a0d9bce5fd3e43e76f863db" target="_blank">Wheelchair Mafia</a>)

More and more often I am attending events where it is common to ask attendees which pronouns they want to be addressed as. So, whether one wants to be addressed as he/him, they/them or she/her. This does not only happen in trans communities, but also beyond. Very liberating for that large group of people who don't identify as "men" or "women"! This development forces me to think again about my own gender identity.

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Online PFI-NL about disability small, but nice!

Logo Pagan Federation International (PFI)

Sunday 15 September was the first online meeting with pagans and heathens with a disability. We were with a small group, but soon it was clear that all participants are used being a go-getter. As a result, we had a very good and effective conversation. The next online meeting is on October 27th at 15:00.

Connecting to Spirits of Land - Residential Intensive

The road (photo: <a href="https://pixabay.com/users/bertvthul-1134851/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=815297">bertvthul</a>)

29th November – 1st December 2019

This autumn British Reclaiming/Feri Witch Raven Edgewalker will visit the Netherlands to give a special workshop. During this weekend intensive we offer the opportunity to build relationships and deepen our existing connections to the land upon which we dwell, and the (un)seen Spirits that we share it with.

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Report workshop “Dis_spelling disability: inclusiveness as a matter of fact”

Picture of Soleil and Jochem

At the PFI-NL Spring Gathering on 25th May one of the activities was a Community Circle about accessibility and the pagan/heathen community. It was the first time this theme was discussed this explicit at a meeting of PFI Netherlands. We look back with satisfaction at this interesting workshop, where we have taken a first step towards inclusiveness as a matter of fact.

Belonging: to feel at home

A group of 10 silhouettes of people: men, women and others.

It is important to have a community where you are among like-minded people. Where people accept you as you are, where half a word is enough. In short, where you are at home. For me, that is the community of transmen. Only there are made no (unspoken) assumptions about my gender, my youth and/or my physical appearance. Only there I can be fully myself without expectations.

My experiences at the Fatigue Clinic

Jochem

In the past year I did the multidisciplinary treatment at the Vermoeidheidkliniek (Fatigue Clinic), location De Bilt. When I contacted them, I had 4 specific questions and I wondered if they could help me with those issues. Yes, they certainly could, the internist and the occupational therapist assured me at the intake. Uunfortunately reality was different: the treatment caused me to regress so badly I almost became bedridden. In this blog you can read what happened.

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