For years, I’d overheard conversations about CHIRS at BIST meetings but didn’t exactly know what it was, other than it seemed to be a place where people with brain injury hung out. When CCAC discharged me – for arbitrary time reasons not because I no longer needed community care – on the contrary I needed it badly – they discharged me to CHIRS. Like anyone with a brain injury, I don’t do well with change. It didn’t help that I felt like I was being dumped by the government and medical establishment into feel-good-while-you-rot-out-of-sight-of-us-the-people-who-have-jobs-and-power-and-so-matter-unlike-you day-program denizens.
My CCAC therapist eased me in, coming with me to the assessment and my first CHIRS group. It took me awhile to adjust, but I came to look forward to seeing the staff who run the group and my fellow inmates, uh, I mean the clients with brain injury. (Really! Some days you feel imprisoned in your injured brain.)
Unlike the others who knew other clients, many of the staff, and the way CHIRS works, I only knew my group at CHIRS. I bypassed the noisy central meeting hub because it overwhelmed my senses.
But I soon learnt that everyone there was kind, welcoming, thoughtful, generous.
The point of CHIRS, unlike CCAC or Cota, is to provide services to people with brain injury indefinitely because they understand that it’s an injury that never goes away and its needs ebb and flow and never leave you.
The CCAC – and the clinics and doctors who see people with brain injury – practice of seeing clients for a pre-determined period of time instead of in accordance with health needs is medical malpractice IMHO.
Anywho, I say all this because after I decided to update Concussion Is Brain Injury, I got to know CHIRS even better.
First, the staff wholeheartedly supported my crowdfunding efforts, unlike the hesitant support from BIST (rather ironic, since while individuals are totally, fully behind me to my eternal gratitude, others seem more concerned about optics or whatever is bothering them than the fact I’m writing this to help the members. I’m certainly not killing myself over this book for my benefit!) Then, I was introduced to a staff member who wanted me to present to the club – that noisy central meeting place I usually avoid!
CHIRS wanted me to talk about writing before and after my brain injury and about crowdfunding Concussion Is Brain Injury. I was told that a couple of CHIRS clients want to write but had felt they couldn’t because of their injury. They needed to hear from someone who had given the middle finger to being told you can’t write anymore and had spent years relearning to write and has now got a few novels under her belt plus is working to try and update her book on brain injury.
Sure, I said.
My injury has given me the ability to speak publicly sans embarrassment or nerves. As I told the group, the person who existed before the brain injury, well, her red face, shaking legs would’ve telegraphed her desire to hightail it while speaking publicly. Me: am loving it. She also would have been reading her speech verbatim. Since I cannot read and publicly speak at the same time – other than reading one of my chapters – I must prepare well enough to be able to remember it.
Fatigue got in the way.
I got my main points down, thought about relevant details, but trying to review it close to presentation time – Oy! Not happening. Words pinged off my forehead like it was made of rubber and laughed at me for trying to read them.
So great relief when I realized the man in charge would ask me questions throughout my talk. All I had to do was answer them! I can do that!!
As I’d anticipated, club members wanted to ask questions throughout my talk. They politely raised their hands not simply blurted out the questions, although I could have handled the latter, being a member of the say-the-thought-before-it-disappears club.
Question: Did you write better before your brain injury?
Answer: My mother says I write better now.
Question: Will you remember this in 3 weeks?
Answer: Ummm, broadly, yes, but not details (thinking: smart question; only someone with a brain injury would think to ask).
Question: What if you get only $4,000 in pledges for Concussion Is Brain Injury?
Answer: Um, without marketing funds, which $4,000 won’t cover, no book sells. I’ll try but …
Question: How do I know what I’m feeling?
Answer: (This question got to me, for I hadn’t heard my own agony reflected back to me before.) You write until you see your emotions come out onto the page. Your arm and hand will probably be killing you before then, but just keep writing.
Question: What’s your name?
Answer: Shireen. (Hey! It’s an expected question so don’t be shy asking, and I don’t mind answering a gazillion times!)
I had a lot of fun. The guys were welcoming (most of the club members there were men), they had a seat all ready for me, but I chose to stand because, yeah, it’s tiring, but I can speak better that way. They had the computer ready for me too so that I could show them my and other relevant websites. They got a microphone so if my puff power faded, I could still be heard by the large crowd all the way to the back.
As I spoke, I could feel the energy change from polite attention to enthusiastic engagement with what I was saying. It fed me, and I left buoyed up by the last thing one writer said to me: what he took away from my speech is to never give up. He thanked me.