What I really needed early on was for some of the Drs who believed that SOMETHING was happening and I wasn’t making it up or it wasn’t in my head – or that kind of thing. And you know, sometimes they’d say you need to go see this kind of Dr… or you need an Internist one might say.OK. I didn’t know what that was – I was very slow – I couldn’t – I mean I could understand what they were saying but processing that or doing something with that was impossible for me at the time. And I really needed the Dr’s to perhaps call one for me. And back me up or give me something that said that at least (that something was happening). Because to me, um, and my brain was very – was very hard and slow – and I couldn’t word concepts or things in my mind that I wanted to. I couldn’t phrase it or couldn’t find the word. Like “weak” or “heavy” were words that I couldn’t find for the first 3 or 4 years. It was very hard – I tried so hard to seem “put together” and not freaked out – as much as is reasonably possible.
I tried so hard to tell them what I could. I couldn’t say much. After the treatment that Id gotten – Im thinking about Dr. C. when I was in California – he was great. And he DID give me something. But… especially after the Mayo Clinic – but even by the time I got to Dr. C. I wasn’t comfortable enough to just say it. By that I mean, um, admit that something was also wrong with my brain. And I was just having so many symptoms and sensations that I couldn’t describe. Even now that sounds crazy. It would have taken a very special Dr to hear that (my symptoms) and go with it I suppose. But um, I think I – even now I’ve done that. And now that I realize I do that, I’m thinking about the last time I saw Dr. O. – I certainly couldn’t tell her what I wanted from her or I didn’t understand how to answer that question [She asked “So what is it you’d like me to do for you”] – I just thought you could just go to a Dr and say “here’s all the things that are happening to me “ – Okay… Now, do something. Not the case.
And I certainly never felt comfortable to also tell them “look – my brain isn’t right and I’m having some cognitive issues and things are slow” I just didn’t have the words that I do now anyway – so I certainly would have only been able to get out “My brain is slow” or something. Maybe. I couldn’t think. Especially couldn’t think of all the things I’d have to tell them at once. Or were happening at once. I couldn’t think of them. I didn’t know how to say things. And when it looked like they didn’t believe me I’d get worried, of course. But… But at least I was just kind of able to say some things. And I felt more comfortable. And um, it just seemed like they didn’t understand the words I was trying to use at first. And they weren’t asking questions… and they were challenging me mentally in ways – I certainly couldn’t respond. I just needed a loved one, or something, to be there and fight for me. Um, or speak for me maybe I mean.
But I didn’t know that really. I just couldn’t tell them. They’d absolutely think I was nuts. “Here’s a list of very vague list of symptoms that don’t sound like anything you’ve heard of on Gods Earth. Oh, by the way, my brain doesn’t work so good”. So, I had a very unique challenge where I also – even if I had someone who wanted to hear more about the brain stuff, or the other symptoms, I just. I didn’t have words. I mean, I could speak. Things would come out of my mouth. Almost like Auto-Pilot. I couldn’t recognize that at first, but…