Last year, at about this time and in near tandem, two important people to me said that I should take a chill pill in my life. I was basically told to go home, stay at home, and “just be happy.” The first time I tried to defend myself, and by the second time I had no response.
Within a matter of days, I created JM Stebbins, LLC. I replied to their advice by saying, “Watch this.”
When I talked to a recovered AE lawyer during my own recovery, he told me that I’d have to work hard to get my confidence back, which I was fine with. I could get behind that. He also told me that I’d have to work to prove myself again. I thought, f&** that and like hell I will.
Maybe the two people who told me to just settle down and enjoy complacency were heartfelt, and I took it wrong. And I believe the lawyer was mostly correct in what he told me. But, the good news is, I don’t have to care. I just do me.
I haven’t asked for much input on my recovery and rebuilding, nor did I want much. I have taken on this illness in my own way. I set about my recovery path on my terms, on my own time. That’s just how I do things. It’s the only way I know how. I’m not saying it’s the right way, but it’s my way. I’m not an expert in much, but I am the expert on my life.
My dreams were crushed. My life felt destroyed. But by being me, and working on my own time, I came back. I rose up. My confidence is back. It took a lot of time and an enormous amount of effort, but I’m happy that I feel more whole again. However, I can guarantee you, I’m not looking to prove myself. I’m still on my terms, living life my own way. I have nothing to prove to anyone. Whether you know, or desire to know, or care, or understand my story or not, it’s still there. It’s still mine. It still is.
Everyone has an idea and a way for me. I’ve accepted that’s just part of living with a monumental illness. 98% of people want to help and they are so kind. But that 2% can get through your ear and into your head. The naysayers.
I’ve had my fair share and I know I’ll have more. Some think I shouldn’t talk so much about AE, some have always thought I talk too much, and some think it’s too public of an affair. It took me a while to get there, but I’m now comfortable with the critique. Everyone is entitled to her own feelings and opinions. But if I haven’t asked for your advice, I probably won’t take to heart your criticism.
In one year, with the help of some beloved people, I took my vehicle for AE advocacy and awareness off the ground. Not in the office I was used to with fancy copy machines and staplers that always worked, but on an old laptop, red pens, and some notebooks. From social media, to the Brain Fever podcast, to the Brian Walk, to television, and more, I have built my own AE community. A community that I wished I had when I was recovering. People share their life stories with me, ask me for help, and ask me for my ear. They shed their tears, tell me their fears, and thank me for reaching out. Mostly, they thank me for being me.
I’ve learned a lot during recovery, but mostly, I’ve learned that I am me and that’s who I’ll always be. That’s the only person I know how to be. You can come with me or not. That’s up to you. I’m good either way.
#StebbinsStrong #autoimmune #encephalitis #survivor #RiseUp #BrainFever
"Can’t see nothin’ in front of me
Can’t see nothin’ coming up behind
I make my way through this darkness
I can’t feel nothing but this chain that binds me
Lost track of how far I’ve gone
How far I’ve gone, how high I’ve climbed …
"Come on up for the rising
Come on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight
"Spirits above and behind me
Faces gone black, eyes burnin’ bright
May their precious blood forever bind me
Lord as I stand before your fiery light
"Sky of blackness and sorrow (a dream of life)
Sky of love, sky of tears (a dream of life)
Sky of glory and sadness (a dream of life)
Sky of mercy, sky of fear (a dream of life)
"Come on up for the rising …"
The Rising ~ by Bruce Springsteen