I am disabled.
I have been struggling with how to inform people or broach the subject and decided that my discomfort with visibility was not a good excuse to remain in the closet, regardless of the fear I have of judgment, as it can be helpful to have a specific person / example to help anchor abstract concepts such as ‘disability’. Please be gentle with me in this process, it has been a massive reckoning that I am not entirely comfortable with, but I am attempting to lean into what frightens me.
Many have been asking me why I have retracted to my seaside sanctuary for significant solitary spells and have not been social. With greater urgency over the past year or so {but for my whole life as I have a genetic condition} I have been seeking to understand what is going on with my body as I have been experiencing a lot of challenges, including persistent pain. Mostly I have been doing my best to keep from drowning in an interpersonal and physical world that is overwhelming to me as a late diagnosed high masking female bodied autistic, and in this process I have been dragged down underneath all social structures and ended up touching the bottom of the ocean of my subconscious. With this post I am now surfacing and bringing the pearls of wisdom from the depths.
It has taken over a year of advocacy in the face of medical gaslighting to get diagnosed with Hypermobile Ehlers Danlos Syndrome {hEDS}, POTS, and Dysautonomia {still in the process of exploring an MCAS diagnosis}. hEDS is a genetic condition that causes abnormal collagen synthesis. Dysautonomia is abnormality in the functioning of the autonomic nervous system {all of the subconscious parts of nervous system functioning}, of which you could say POTS is a specific flavor.
Allopathic medicine says there are no cures, there is only treatment management. These conditions, which are frequently co morbid, are often misdiagnosed or under diagnosed. The amount of personal research and survival advocacy I have had to do to request the tests, appointments, referrals, faxing medical records, etc. to diagnose these conditions has been existentially exhausting. I wish I could receive the care that I give.
Interestingly much of what is recommended for symptom management I have already been doing for a very long time / are considered ‘quirks’ of my personality : low FODMAP diet, low impact exercise / cusioned ground due to hypermobility, inventing my bodywork style {mutual pandulation that co regulates the nervous systems of all participating}, traveling around with an aerial rig to decompress my spine + joints, wearing gloves {to protect my super soft, stretchy, and slow healing skin}, and even living at sea level. My dysautonomia has made me an expert in how to regulate the nervous system out of a hypersensitive survival necessity.
Living with an ‘incurable’ invisible illness creates a massive container of compassion born of challenge. I am a corporeal canary in the coal mine who needs to create somatic sanctuaries wherever I go so that I can exist in a space without pain or days of recovery.
I believe this is also why I am so perceptive and permeable to the collective subconscious : because i have needed to feel beyond the boundary of my own autonomic processes to be able to monitor and regulate my nervous system to continue to exist in physical form with the boss level body and epigenetic trauma history I have been given.
Beyond research into my condition, I have been spending much of my time in movement meditation at my ocean monastery, studying feral feminine threads of knowledge, and creating custom rituals for rapturously reconnecting us with a regulated state in the body and from there expanding our edges to include the whole ecosensual ecosystem. I am very grateful to have the framework of Earth Body, a federally recognized church I co-founded to guide my understanding of my purpose and provide some social scaffolding that others can grasp conceptually as I live an unusual life as a somatic creature creating new cultures {donations gratefully received to continue expanding and sharing this work}. My body is the earth and we are in pain.
I am seeking to spend my rare / kariotic shifting capacity life force energy in ongoing ceremonial offering to your ability to be present as this aids in ascribing value to the pain I am currently constantly experiencing. I can offer the intensity of my enduring physical form as an ordeal path to oneness. This helps me make meaning to frame my persistence in remaining in physical form as a prayer of permission for you to find your pluripotent pleasure while we are on this plane. May we find presence in physicality, we will be disembodied soon enough.
‘work’ wise I am requesting support with sharing my skills with those you sense could benefit. I am a world shifting healer and relational artist at the evolving embodied edge, my strength is not marketing.
I am grateful for you to refer beings that could be served by the wisdom I have cultivated in the healing realms of bodywork and somatic therapy, and with this nascent label, as an advisor to make more disability accommodating spaces, which creates sensory and Somatic Sanctuaries for all people, even those that are able bodied. If you live long enough, you will also become disabled {I’m just an early adopter /lh {this /lh means ‘said in a lighthearted tone’ and is a tone tag, they help autistics like me understand the intent} }. I also am skilled at being : a muse, creative doula, book / writing editor, Theraputographer / video + audio documentor, and +more+ on my web portal Raz.ma
I welcome invitations to your healing spaces such as hot springs and other nature + body based temples, and to advise on birthing new nourishing healing places. I welcome your advocacy of my inclusion in spaces and at events that would be served by the healing grounded wisdom I am privileged to embody and share as a disabled person. I seek kindreds to ideate and bodystorm on these threads of creating a world that honors diverse threads of knowledge over fawning to preexisting power dynamics. I am the truth telling healer jester.
More acutely, I am currently waking up in the middle of the night with physical pain. I am seeking references for physical therapists experienced with hEDS, as all the appointments are booked out months in advance. I also need to do low impact movement, the best of which, due to the pressure being regulating, is swimming. If you know of salt water pools {chlorine makes my skin react} I would be deeply grateful to be given access especially while I build up joint-supportive muscle strength. I have been informed that my level of care has burned out my small circle of support that I admittedly have been leaning on, and I am feeling like a burden, so if you feel like you have capacity I welcome words of affirmation to help me rebalance into compassion and hope and reminding me of the good I bring into this world in my existence. My dream is to live in a temple where I can heal everyone that comes and my basic needs are taken care of. I am ready to live with beloveds again after living on my own for the first time in my life.
Thank you for your consideration in helping co-create compassionate corporeal culture.