My body was a coffin after the onset of Psychogenic Non-epileptic Seizures*, a mental condition, in 2010. It was a living breathing container for a dead person walking.
Consciousness came with unending electric pain zapping through my limbs, back, head and left me exhausted and unable to do the basics of life — like get out of bed. All attempts at self-care needed the help of another person to support, carry or protect my head if I hit the ground to shake, rattle and roll. A slight breeze on my skin would be enough to trigger the hell.
At this point, time had zero meaning and amnesia masked my memories — including the birth of my daughter. She was 18-months-old when I triggered. I’m told I was in bed for the majority of two years and lost a lot of hair. Because my condition was considered a mental illness — stigma crept in and I absorbed it. I was bounced between neurologists and psychiatrists. None knew how to help me.
A neurologist told my partner (at that time) that if I just believed in my diagnosis it would go away. The cure to my mental illness was to believe I had a mental illness. I didn’t deny my diagnosis. After that, I thought perhaps I needed to believe it more and it was my fault for not believing it enough. What I wanted was a better quality of life. The experts told me my cure was the thoughts in my head.
When the reality hit I was unable to return to my career, care for my children, shave my own legs or walk without falling — and that I most likely would never be able to do those things again — I lost all my self-worth. I was no longer a breadwinner, active mother, or involved with any community events. What did I have to offer other than suck the life out of people who loved me? Regardless of what I was told, I felt like a burden. There was no room to deny that now I had to be cared for like a child too.
By 2014, I had made slow gradual improvement. I could walk without a cane, speak more clearly with intense focus and dress myself. I could even go out to a very well-planned coffee date with a friend — with the full knowledge it could last five minutes or an hour. Life outside depended on my ability to handle the sensory load of noise, light and vibrations in public.
In January of that year, my social worker at the local independence living center, approached me about applying for a workshop by Each Mind Matters: California’s Mental Health Movement organization to learn how to share my story.
At first, I was flabbergasted. She wanted me to do what? My social worker shared she thought I was exactly the right person for this type of training. My story needed to be heard to let others know they weren’t alone, recovery is possible and help break the stigma of living with a severe mental illness.
Wow. After so long feeling like a financial, emotional and soul-drain to the people around me, I could use this experience to help the community? I didn’t know if I could make two hours in a learning-environment much less two full days. Decided I couldn’t tell myself no out of fear of not being well enough to participate appropriately and applied. I’m so glad I did. Those two days changed my life and set the course of my future advocacy efforts. It was there I met Carolyn Cooper, a founder of United Children and Families Foundation (UACF), and listened as she shared about her son’s and her journey through his life and death.
Afterwards, I spoke with Cooper about her endurance and the life of her son. We talked awhile and she shared more about her efforts in the special needs education arena and I realized — this woman’s work has directly helped my children in their special needs placements. If I hadn’t met her, I’d never known how integral her work was to my children’s services in school.
When I asked how she did she survive the experiences of the life, lack mental health and special needs services for her son and then his death … She replied her son’s life had value and learned so much about mental health and special needs education. She also said, “You make it mean something.”
Make it mean something.
That arrow of truth and hope struck and struck my soul. Here was a woman who worked so hard during the life of her son and then continued on — so no other mother would have to go through her experience — and became the founding mother of UACF. This now big organization was started with a small group of folks of parents and loved ones. It was UACF, in 2014, who brought the Each Mind Matters training into town with the goal to create positive change through sharing stories.
Cooper made me feel positive and that I could make my life mean something after so many years of illness and bedrest. At that time it didn’t occur to me to attempt to follow in her footsteps of starting a non-profit. Far too lofty of a goal at my point of wellness then.
I did take sharing my story very serious because I had already felt the impact of Cooper’s work. I knew sharing about my illness would make a difference out there to someone — regardless how uncomfortable it felt.
After that training, I created a video about my story and posted it to Youtube. I have since obtained additional training through NAMI Fresno and have spoke to high school students, crisis intervention teams, EMTs, police officers and highway patrol — among others. Last year, II was compelled to break institutionalized stigma being promoted by a local company with their name 51Fifty Energy Drink and slogan to “Live the Madness.”
5150 is California’s Welfare and Institutions code for when a person, as a result of a mental health disorder, is a danger to others, themselves, or gravely disabled.
The efforts of #TheReal5150 social media campaign prompted California’s largest grocery retailer, Save Mart, to discontinue the product from being placed on their shelves. The decision was met with a media storm and lots of anger from the fans of the drink. Recently, the owner of the company has announced the choice to keep the name and slogan — but launch a campaign to reduce stigma of mental illness through “Race To End Stigma” campaign.
It’s my hope it’s a step in the right direction for more positive change in the community.
That campaign taught me that so much is needed to break the stigma still — and that mental conditions, autism, other neuro-related differences were incredibly misunderstood.
That the voices of peers were greatly missing in this conversation. Many peers are still so trapped by mental illness stigma, it’s too dangerous for them to talk about it freely. Many peers on the spectrum, have been told they aren’t autistic enough or too autistic to be taken seriously with their voices of advocacy for inclusion and acceptance.
And while I didn’t dream of creating a community business organization when I met Carolyn Cooper — I can now and have launched AmericanBadassAdvocates.org.
(Jan 2018 the site has evolved into InternationalBadassActivists.org.)
It’s time to change that.
Last week I launched AmericanBadassAdvocates.org to promote and create peer-led initiatives for neurodiversity. It’s time to add our voice to the mix. Our loved ones have done well to support, find services and advocate for us. Now we need to stand up with them and speak too. Nothing about us without us.
It was hearing and meeting Carolyn Cooper that changed the direction of my life from burden to activist. My life has a purpose and it feels great. I live again and with purpose: making it mean something. Now that’s Badass. — Eve