My body has been giving me grief in a more intense fashion than typical these days. It’s been weeks and weeks actually … since last sept when it started hitting hard and I lost my ability to walk freely.
He also is my caregiver. He does it all. Work, cook, manage the house, laundry, scheduling, transportation, wheelchair transporter and manager, helps me get dressed, and OMG He’s fabulous with my hair. I have a hard time getting my arms over my head — so he’s taken on Le Pouf
and fabulously, I’ll add. He’s taught me I can feel joy, deep love, happiness, comfort again. He’s worked with my symptoms of PTSD and has never held it against me for those terrible times of flashbacks, horrible or no sleep, screaming nightmares, and so on.
This man has stood by me even when I didnt feel worthy, or an equal, and worried I’d be a burden on him for life. I do take a lot of care and struggle with basic self-care and need that support for my independence.
This man has taught me I can feel truly joyous and happy even while suffering ungodly daily pain, and enjoy my life at the same time. We have such different takes on the world, but we find each other in our humanity and our conversations.
What they know so far: It’s a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly When the brain attacks happen — it’s like a big BSOD back in the day and a need for a hard reboot.
It was absolutely never, ever in my framework that I wouldn’t be working long into my 70s at least. I loved my career. I had all my self-esteem generated through it — it was a place I was accepted and different. My work was my pride.
Afterwards, I was in a coma-like state for a few years. Not sure of it all, but am told stories and see pictures from during that time. I lost my abilities in so many ways, like reading a book. Cooking and baking. And the ability to talk, walk, care for my babies, and provide.
That is the greatest pain of my life: Not being able to parent full-time and hands on. My disability prevents it and it’s my constant ache and pain to have my babies live in another house — and yet, they are loved and we have an incredible village surrounding them.
Now that I have life stability, a love and partner that’s a support (not a predator)– was able to do things like find, a doctor I could trust. My experiences with them have left me traumatized and avoiding them at all costs. They didnt help me anyways.
I am gong to be a patient of Stanford for life now. Working on next appointments and such — and the plan of care is to have me stay on campus for 6 weeks of therapy (physical and brain) and doc thinks with it I’ll be up and walking and doing stuff again.
That seems too far-fetched to me, but she’s the doc. Like THE doc of only a few in the world who understand this. So I will take her word for it. My darkest day was being so ill, being so abused, being so depressed and had no hope —
literally life without hope is not something I ever hope you experience. I’d go out in front of my apartment and sit on a bus bench. One to feel indirect sun on my face. Get some freedom. Feel apart of the world.
I was with the abuser/predtor/monster at the time and horribly , horribly, horribly gas-lighted and fiercely harmed – financially abused and so many other ways too. So I sat on the bench. I looked like hell. Hair greasy, unkempt, my brain lost in worlds and different times,
My abrupt alert to focus was a man who spit at me and called me a crazy bitch. Because I sat there. I lost my soul for awhile after that. And then Each Mind Matters and NAMI Fresno happened. Taught me my way back out of hell.
And now, I’m going to train to be an advocacy teacher. OMFG. A goal of mine for a couple of years now . They’ve accepted that I need a lot of accommodation, Bill with me as my support, and so much I didnt know it was possible.
And that I’ll take my #actuallyautistic self and meet other people, share with them how to share their story and become advocates — my life is incredible. Incredible. It’s 2018 and I’m alive. #staystrong