Earlier this year, I recorded a podcast with Andrew Gurza, from Disability After Dark1. I loved the experience – they put me at ease, were kind and affirming, and was genuinely tuned in to our conversation. I am so thankful for that experience. If you listened, thank you so much for your support. If you didn’t, here is the link https://podcasts.apple.com/us/podcast/episode-315-talking-disability-death-cafes-and-eds-w/id1151890990?i=1000582049032
After listening to the released podcast, I realized that there was so much I left unsaid (How can you fit in all the things in an hour?) as well as resources I wanted to share with the community. So, I am including those things here.
About land acknowledgments:
- An important practice in recognition of the original and current stewards of the land we occupy: https://native-land.ca/?fbclid=IwAR3iG_4d96eolf7uvQIVi-D7nM9CHsX_1Z4yPKFhX6ukrSVuHesgcS_Jywc
- The practice doesn’t end there: now what? How do we honor those people? How do we for relationship with and protect the land? There will be personal and varied responses here, but the point is to recognize that the work is also beyond an acknowledgment.
- I state my identity early on in the podcast. I do not owe that identity to anyone and, historically, wouldn’t normally center it. However, I am learning that to better serve the communities I work in and represent, stating identities and intersections of privilege (or oppressions) can help inform the listener or community members a bit about how someone shows up and their lived experience.
- I feel that not stating my identity perpetuates hetero and cis normativity. Marking my identity as not makes more room for others to do the same and creates a safer and more affirming world, in a small way.
- Passing or living stealth is not necessarily a win when meaningful parts of yourself are overlooked. Some days that’s fine, other days, that sucks.
- People with EDS can present very differently, over time and across people. My main complaint is fatigue – this can be challenging to navigate around relationships, work, parenting, etc and gets particularly bad in the evenings.
- I also have pain (typically one of my hips, making prolonged sitting difficult and my hands, making soft tissue mobilization and other hand-heavy activities challenging for me), easy bruising, prone to injuries and random swelling (often in my hands and feet), raynaud syndrome, dizziness spells, difficulty with certain medications, coordination and balance impairments, need for corrective surgeries, among other things. Gentle activities like gardening and yoga tend to be the most aggravating and injury prone to me, which is counter intuitive.
- I don’t complain often because I don’t want to, but in not letting people know how I feel, they tend to dismiss my issues or forget I have them.
- If you want to learn more about EDS, POTS, MCAS etc, check out https://www.ehlers-danlos.com/ I am a listed provider on there for exercise and sexuality counseling (body image, fatigue, pelvic pain, break through bleeding for those that menstruate, etc can be issues associated with EDS that impact sexuality). My lifelong passion for exercise and my desire to train my “weaknesses” (as defined by our ableist society) allowed me to skirt under the radar and not be diagnosed with EDS until I was 40.
- There is a great resource for yoga for people with disability – Mathew Sanford from Mind Body Solutions. https://www.mindbodysolutions.org/about-us/matthew-sanford/ He wrote the book Waking, another good resource.
- I have taken trainings with Mathew. I am also a physical therapist and am comfortable adapting yoga to a variety of bodies and abilities and do so for individuals with disability in my local community.
- I trained with Kashi Atlanta in 2008 or so and Awilda Rivera in 20172
- Reiki is an energy technique (shamanic practice) from Japan and is similar to other healing hands traditions from around the world, including ‘hot hands’ from the Welsh, Irish, and Scots.
- For more info, see https://ignitewell-being.com/what-is-reiki/
The Wounded Healer (a favorite of mine so this is a longer point):
- A commonly discussed topic in the community spaces I have been involved in is that of the wounded healer. This is an archetype according to some (Jungian psychologists) and myth (see Chiron3 – the idea being that we can use what injured or wounded us, our pain or heartbreak, and our journey toward healing and wellbeing to help others.
- Other traditions that utilize this archetype are shamanic traditions – shamanic practitioners often discuss the collective wounds and personal wounds, using that wisdom and knowledge to help others, and participate in dismemberment journeys to be deconstructed and consumed, only to resurrect as a more intact/aware/well self4. This is essentially a spiritual practice that follows the wounded healer archetype.
- Considering how we can use our pain to help others is a well-known coping mechanism, including for people living with trauma, and creating community and empathy around pain is a tool of social justice and change5. We discuss these concepts often in groups and one on one with my folks –make meaning and growth out of your pain in a way that fits you, work to help others, and in doing so, find your community and support to further unburden yourself and grow.
- Additional folks discussing using your pain for growth that I am familiar with include Brene Brown, Sandra Ingerman, Toko-Pa Turner, Dr. Clarissa Pinkola Estes, Ram Dass, Pema Chodron, Gregory Boyle, Sonya Renee Taylor, Audre Lorde, Joan Halifax, as well as Mary Oliver and many poets (such as Hafiz and Rumi)
- In the podcast with Andrew, I used the terms ‘follow your heartbreak’ and juicebumps – these were phrases brought to me by a community member (either friend, client, and/or group member) and shared in conversation in the weeks prior to recording the podcast (I believe), in reference to the wounded healer and feeling your feelings while making meaning.
- In the months since the podcast was recorded, with further community conversations, I learned these terms may have originated from Alua Arthur, a well-known death doula. Although I have not taken her classes (I function more as a death doula for the very much living, though that is a tenuous distinction), more than a handful of folks I know have taken her death doula training course, so I am not surprised but thankful that her phrasing impacts the spaces I am in, the individuals that share that space with me/us, and ultimately impact me.
- I am very careful in my writing and want to cite folks when I know where phrases come from, but I tend to be more casual in conversation. I also read so many books (around 150 a year) and listen to many podcasts and tedtalks, plus all the conversations I engage in while in community, it can be very difficult knowing where ideas that I came across originated.
- I want to be sure to credit her, as being a likely source and resource, as her ideas are shared amongst and impact our community. She is doing some much needed social care in examining how systems impact end of life practice (like racism and death care). Find more about her at Going with Grace https://goingwithgrace.com/
- And I just love the phrase juicebumps. I tend to feel emotions very sensually and physically in my body, to the point that they show up as goosebumps (awe, fear, love, affirmation, connection, happiness, joy) and feel like electricity. Whomever started this phrasing – instant poet status. Love it so much and fits my lived experience. Let’s make this a common phrase.
Why I became a sexuality counselor:
- There is so much to this and I didn’t get to go into details while recording the podcast on why I became a sexuality counselor or even what they do.
- I have a variety of personal and professional motivations for doing this work, beyond a history of desire discrepancy and gross advice from a healthcare provider.
- If interested, you can read more here: https://ignitewell-being.com/how-did-i-get-into-sexuality-counseling-and-education/ and https://ignitewell-being.com/what-is-sexuality-counseling/
Death cafes and supernatural stories:
- Andrew and I discussed death cafes. You can find more info here: https://deathcafe.com/ and https://ignitewell-being.com/death-cafe-naperville/ Please consider being a donor to the international project.
- I also mentioned to Andrew that I love ghost stories. I am a psychopomp and assist with helping the deceased cross over. You can read more here: https://ignitewell-being.com/psychopomp/
- Ghost stories and Halloween season are my favorite – feel free to reach out with your stories
Thank you for reading some follow up thoughts, clarifications, and references. Please support Andrew Gurza’s work, the work of Death Cafes, the work of Alua Arthur among the many others shining a light on the wounded healers and poets. I adore all of you.
- See Tarana Burke’s book Unbound, on her intention around the #MeToo movement
The above content is written by Dr. Allison Mitch, PT (DPT), RYT500; sex-positive/affirming, trained, and trauma-informed sexuality counselor and educator (she/her/they/them); copyright protected, please cite accordingly. The picture is from Pexels.
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