Lacey Woida
supported by her family & friends
Darrick & Ayanna Stone
Lacey knows the burden and danger that comes with a misdiagnosis & medical neglect as she was wrongly labeled with a Personality Disorder for many years. Turns out Lacey was born with a rare genetic condition called Ehlers Danlos Syndrome along with Autism, ADHD & a Math Learning Disability. She joined the Rain Watcher Project to honor her grief & her body and to document the power that comes from re-narrating ones life-story through a new lens of intersecting multiple late-diagnoses.
THE PULL OF THE RIVER
I can’t recall ever feeling safe & carefree. Water has been the only breadcrumbs connecting me back to the safety of my mothers womb. How I experience & how I feel in water was like a stored body memory that unconsciously stitched a thinly threaded line of hope that I too could have embodied peace again. That I could come home to myself to rest because I have briefly experienced being covered & secure. Water was my treasure map & I was the treasure. I have lived my life mostly separate & unattached. I know how to give love & how to receive love & I have experienced both. I’m actively trying to learn & practice how to hold love for longer periods of time. I’m made up of many parts, many versions of myself that I had to be to survive. I am just trying to fully inhabit my body, my voice, & take up space with both feet on the ground as I live & love & grieve.
Trauma at a young age has a way of letting you know you are on your own & everything & everyone could be taken from you at any time. As a survivor of a parental abduction when I was three years old I knew very young that our whole lives could be ripped away from us as in my case yanked from my whole existence of everything I ever knew that made me feel secure & connected.
Since my teenage years thoughts of suicide & later self harm gave me a temporary release & sense of control. Letting myself just even think the thoughts acted like a safety pressure release valve that I could turn to release some tension, knowing that I could escape my body if things ever got too bad for too long. Thankfully I’m still here trying to experience life & love before my time is up & I am already painstakingly aware I have already missed out on so many time sensitive things. I’m truly at a loss of how to grieve those things & move on.
When I turned for help I was constantly dismissed over & over again. I was told all my problems stem from just simply being a female, whose obese, capable but lazy, just depressed & anxious. Turns out I was born with a rare genetic condition called Ehlers Danlos Syndrome, along with Complex PTSD, Autism, ADHD, & a Math Learning Disability. I never had a “Personality Disorder”. I have now realized I never truly wanted to die or harm myself, I just didn’t want to suffer anymore & needed tons of supports.
photographed by Lee Elee Vue / writing & concept by Lacey Woida
A DIFFERENT KIND OF GRIEF
We mostly think of the loss of a loved one when we think of people experiencing grief. My major themes of loss & grief in my life were not just from someone or something being taken from me, some of my most earliest losses were never feeling safe or feeling connected to anyone, let alone my own body. Because of all my intersecting late diagnoses I feel I missed out on time sensitive stuff that I will never get to do or experience. Also because of the misdiagnoses & medical neglect & medical trauma my body has suffered the toll of going without proper supports & accommodations. No one should have to suffer till their in their 30’s & 40’s to finally be given a vague owners manual to their very own body & brain that operates differently. Because of my misdiagnoses, I falsely deduced I was born without a will to live. I was in fact failing to thrive but very much alive & wanted to live but it wasn’t til I fought for my correct diagnoses & received them did I stop self harming & had less suicidal thoughts. I almost lost my life 6 years ago to a suicide attempt. I would of been just another statistic when all I needed was correct diagnoses, treatment & supports & accommodations. And I also know now that nothing was wrong with me, I am just made differently and Im not broken I just need different structure & supports in place to live..
photographer Lacey Marie Woida & Kristine Sorensen / writing & concept by Lacey Woida
Standing With Both Feet
I spent a big majority of my life floating in a strange existence, it’s what is called dissociation. It can be a feeling of not feeling real or the world and others not feeling real to you. I felt like life was too much of a heavy burden to carry & that somehow I knew in my core being that I wasn’t suppose to take up space or be loud. I wrote some lyrics when I was a teenager that explained how I felt like I was holding up a heavy ceiling that was crushing me, yet I was only allowed to have one foot on the ground & not take up space. I spent too much time dealing with the pull of the rivers current & floating around like a ghost ship throughout my life. I’m very familiar with my grief & my loss, it’s all I ever known, its been my home since I can remember. I would like to start taking more day trips out of the waters of my grief, back into my body, with both feet on the ground. I would like to dare to let myself continue to feel more attached & take more risks & experience more life & love & joy, you know those scary kind of feelings.
The Burden Of The MisdiagnoseD: A Different Kind Of GrieF
The Rain Watcher Project is supported in part by Capitol Region Watershed District , the FR Bigelow Foundation, the Saint Paul and Minnesota Foundation, the McKnight Foundation, the Minnesota State Arts Board Creative Support Fund, the Metropolitan Regional Arts Council Flexible Support Fund, the Minnesota State Arts Board American Rescue Plan Award.