OH my, how my activism has changed since 2008 (and my knowledge increased exponentially woot).
My first campaign … and the first time I learned what that puzzle piece really meant. This was in 2008 my friends — and we’re still battling the bs.
After this campaign I curated over 200 bloggers (looking back, it was a cacophony of the good, the great, the bad and the omfg ugly -) for a special dedicated section on BlogNetNews.com and it was there until it’s demise some years later.
That site used to be known to newspaper opinion editors as a great place to have your work highlighted.
In March 2009 I had my daughter after a very difficult pregnancy that had me hospitalized before her birth for more weeks than I can remember. Every night I questioned if I’d see the sun rise the next day as my blood pressure spiked to levels that couldn’t be read by the machines – and the nurses and hospital staff would surround my bed and do their work to keep me alive. Doctors would called and orders given. I don’t know why the nights were the worst for me.
Every night I survived the hubbub around me, the meds, the monitors, the fear in everyone’s face, by watching Detective Goren on the little tv high up in the corner of the room. Again, I don’t know why, he comforted me while my body and fate were in the hands of professionals.
I’m told I never quite recovered fully from my illness then. Not really. For 18 months I had a grace period to love and raise my daughter and family.
She’ll be 11 this March. She’s only ever known me ill. Since she’s been just under two years old, I’ve not been capable of parenting her day-to-day with things most moms take for granted like baths, dinner, homework, helping navigate sibling conflicts and so on.
That is the greatest pain of my life. The greatest regret, and not one I could do anything about. Willpower did not fix me. Still won’t.
December of 2010 … my life and world ended. Stroke, MS, brain tumors and all were ruled out. Crazy was ruled in. Functional Neurological Disorder is the word for it now — and severe PTSD. yeah, not sure any PTSD doesn’t feel severe, but apparently I got an extra special dose of it.
I’ve stood on stages and accepted awards and been hailed one of the best in my career back in the day.
I’ve sat on a bus bench in a psychotic break, alone not looking too fashionable (bath weeks old), called crazy and spit on by a pedestrian dressed in a suit.
I’ve seen and experienced most everything in between.
I’ve lived without hope. I’ve lived a dystopia only I could see — and only a few, my peers, could understand.
I’ve lived days where my only goal was to keep this body warm … and breathing … so my children didn’t have to mourn me. That for many days was the best I could do.
I’ve lived days inside a closet trying to force myself to hear my children crying at my funeral over the compulsion and monster of suicide fighting my brain. No, I didn’t want to die. I never did, but that’s not what the fight is about. Mental illness, PTSD, suicide ideation doesn’t logic that way. I hope you never know that first-hand, and can just take my word for it.
I’ve survived abuse in more formats than I knew existed. I’ve been abused by some very bad people in this world – one, who at the time, were taking credit for being my ‘caregiver.’ Oh how hard I was for them to manage. The agony and burden … I was voiceless, suffered massive amnesia and 100% dependent at some points of my journey. And at the same time, in the hands of a predator. (That’s another story for another day when I’m far more ready to face it and maintain any sort of stability too.)
I know with lived-experience the empathy, compassion and treatment of people I never imagined would be kind and generous with me.
I have the lived-experience of people I thought were good be cruel, ugly and spiteful when I wasn’t able to speak, defend or even feed myself. I can’t ever share entirely enough the shock of knowing how people treat me when I can’t speak … and when they think I can’t understand them or remember.
I’ve experienced the slow-fade of people leaving my life. It’s too much for most, I know. Doesn’t make these people bad, it’s just too much, and I understand that.
Oh fuck, and then the other people who can be wicked, wicked, wicked selfish fucks – and at the same time be honored as a community leaders, heroes, and get kudos for all their work with the disabled, the burdens, the sad sacs of life who are so much better now because of *insert inspiration porn headline here.*
Only, I know better now.
On any given day, I’d stake out a corner with someone homeless and be understood and cared for far better than trying to find help from others. Hell, there are many times I’ve been helped by someone society frowns on to a safer area, given bottled water and offered a place to rest and recover.
I’ve been given a stuffed toy from a person who was homeless, and still is here in town, to comfort me and brighten my day.
I’ve suffered so much abuse after disability, if I didn’t have PTSD already, I would now. So talk about complications. Of course, I had no idea of what was yet to come when I posted a goodbye on my blog (at the time).
You see, I thought I’d already survived the worst of it by losing my ability to hands on parent, lost my career, and essentially died without dying – in bed for many years, couldn’t understand people, my words weren’t understood. Literally my body kept my soul prisoner and would not let me go.
Drugs like valium, xanax, and others I can’t remember were prescribed and I ate them like skittles – not knowing or ever being told about the dependency and side effects. My extreme movements, tics, tremors, seizures and more at that time were unstoppable. Doctors prescribed everything under the sun to help but nothing did.
Many people who knew me online didn’t know what was happening in my physical world and life. My ‘focused’ moments and typing were far more presentable than words I could speak.
I’d been told that my illness was a figment of my mind. If I just believed it to be real, it would go away. I tried so hard ti ‘will’ myself healthy again. I failed. and failed. and failed.
Many accused me of faking my illness at this point. Some still consider that I might be …I guess the idea of that is better than the reality of what I’m really battling here. I don’t know. It’s also the stigma of mental illness that shapes this too.
It took me some time to recognize how ill I was and how it wasn’t going to change. It wasn’t going to just go away and doctors weren’t able to help me with anything … yet.
So back then, on my blog at the time:
Thank you to all the readers, friends and folks who’ve inspired me to write since I started blogging in 2005.
While I really loved the concept of youth entertainment in this last reincarnation, I’m stepping away to focus on regaining my health.
It’s a journey that’s taking longer than I ever imagined and I’ve accepted that I need to take a slower approach to recovery. For now, this is a positive step in the right direction and you’ll all be missed.
Until we meet again.
It’s now 2020 and guess what … recovery never happened. Instead, what I’ve done is learned how to live disabled and accept myself as I am. Over the years, I’ve asked doctors repeatedly how I could have a better quality of life.
No one knew.
And then, of course, this chain of events over the years — none at the time I would have ever been able to FATHOM in 2011 — and surviving string of folks who tried to be ‘caregivers’ but were only in it for their own emo treats or agenda.
I’ve survived living alone, all by myself with just my dog Cally, needing care but not able to trust anyone to help me either. I’ve had the help of my mom keeping my bills and finances managed (I can’t track time or count money now and that complicates things).
I’ve gone through phases of great wellness and periods of time of great abilities to walk, talk and see people. Then periods of time something is flared up and I’m home-bound for long periods of time again.
During a good era of wellness, I would venture out and go to art hops and socialize.
I met Bill at one of these art hops.
And then life changed again. It’s an entirely different fight now loving this man and being so loved. It’s a different sense of self-esteem and wellness feeling so loved and spoiled. Bill doesn’t treat me like a burden. Hell, he doesn’t even treat the things I need help with as ‘accommodations’ and ‘caregiver support.’
No, in every way, even when helping me put on my clothes and shoes, he makes me feel like a queen. Actually, more than that, the way he loves me, I know I am his queen. (gotta see the crown, awesome stuff)
Bill has taught me that no matter what, love can heal the things you can’t see broken. Bill has taught me that I can be loved for me, just me, still… not in spite of being disabled, not because I’m disabled. To be seen for me is the greatest gift – and then to be loved for it too.
Bill has taught me that I can love freely. He’s taught me I can love and not be abused. I can love and not be a burden. I can love and be loved. Bill found away to find me hidden in the dark of the darkest spot in the closet — and waited until I understood that no matter what, I was no longer alone. He waited until I trusted and we left the dark together. (it’s probably been two years since my last episode like this.)
Bill has given me what doctors never could. He gives me what they still can’t. He is my everything.
And while I go through my rounds of doctors, hope and defeat, Bill is here. It’s only in the past couple of months I’ve found any help from medicine to improve my quality of life. A tiny pill three times a day hasn’t ‘cured’ my disability – but it’s made it far more greatly manageable and reduced my daily pain levels.
I’m so glad I didn’t know the journey ahead of me in 2011 when I posted that last blog. I’m happy to have some sort of help now. It’s only been some weeks, and this shit is still hard as hell to manage daily, but wow. What a difference now. Never underestimate ‘improve quality of life’ support and the difference it can make for a person. …And I know this is a meander (if you made it this far), but I’m so thrilled for year 2020. Life feels exciting again. It feels hopeful again. It feels like there’s purpose and meaning again.
No, life isn’t easy and I still can’t do what I want to do most: parent my kids day-to-day, but it is an improvement I couldn’t have dreamed of three years ago. And I’m starting to be able to do more in mixed company, mixed sensory surroundings and such. So there’s that. (and that’s a lot of awesome)
But the big fix from the doctors I’d thought would happen in 2011 never did happen. Life never went back to the way it was. It never will. You know what? That’s OK. The miracle here is that life goes on, reinvents itself and it can be awesome again — even if my body is not.
The miracle here for my illness and disability is not the doctors. It’s not the medicine.
Here’s to a kickass 2020