It’s Endless Saturday. I used to call it Waiting Saturday. Like that day when Jesus’s disciples, particularly the women, waited for the Sabbath to be over so that they could visit his grave; like that day, the day after tragedy struck, and no one knew what to do other than wait, my life was one of waiting, of recovering from the shock of my brain injury, waiting for life to return to normal. But normal didn’t come, and my life turned into an Endless Saturday when the tragedy that caused it was behind me yet the new life of promise had not yet come despite working hard to heal my brain.
Well, it wasn’t my life or my injury that was putting me in Endless Saturday, I was informed. It was my attitude. I am surrounded, as most people with brain injury are, with messages of “move on,” “be positive,” “look at what you have, not what you lost,” “accept the changes,” “unpack the boxes of the new you,” “look at how far you’ve come.” Etc. Etc. The messages are endless and come at you from everywhere including from your peers as each brain-injury newbie goes through the same process of parroting the feel-good industry until you want to hurl all over the positivity and inspirational messages. I have never been so sure as I am now that it’s all bunk – it’s all to hide the fact that society and medicine does not want to deal with us, acknowledge our existence, and would rather we pretend we’re happy than to create a world in which we can be.
Oh-oh there goes my attitude again.
I’m not positive enough.
I don’t look at what I have enough.
I don’t appreciate how far I’ve come enough.
And then I remember England.
In less than 24 hours of arriving on England’s green and dimmer shores, I was free of my life. Toronto was behind me. Ahead of me lay 12 days of totally being allowed to be me, to be in control of my own life. Twelve days of not being at the mercy of others. Early into my trip, I mailed my biofeedback trainer a postcard from the British Museum. Yup, people still love the old-fashioned postcard. And I found a great one. She knew immediately upon reading whatever it was I wrote that I was happy. Then when I returned, my neurodoc was struck by how I “appeared markedly and significantly better.” It so dumbfounded him that he has changed his perception of my life, which he now calls my “Ontario life.”
What is the difference between my “Ontario life” before I went on vacation and after? I asked. There is no difference other than his perception and my ability to tolerate it. Actually, I don’t think there’s much difference in my tolerance: I went because I was about to crack apart.
I am again.
Ever since my “Ontario life” reasserted itself – it took only about 5 days to wallop me – I have been feeling like Wile E Coyote after he’s been conked and cracks appear all over him. I’m in that place as the cracks widen, just before he fractures into a million pieces. I am like the Angel of Denial (above), except I’m not denying the reality of my life but warding off its blows.
My neurodoc wanted to know: how many factors were responsible for me
- being relaxed
- my affect being reasonably good
- not having much irritability
- being better grounded
- not being stressed
- having a better quality of feeling (whatever that means) after my England trip?
Only one: relationships.
No, I lie. Two. Relationships and the energy drain of activities of daily living.
Whilst in England, I didn’t have to cook, clean, deal with Toronto’s garbage system, travel on a system that is hostile to the invisibly disabled, make the hundreds of decisions that are necessary to take care of one’s home and oneself. The biggest decision I had to make was whether to order the Continental breakfast or porridge or pancakes on the third morning of my hotel stay. Believe it or not, it took me a long time to decide because my brain injury has destroyed my decision-making ability, and it’s only slightly returned, mostly because of strategies like making the same choices in order to cut down on the number of decisions. But that day I didn’t want same-old, same-old breakfast. I wanted a treat. I had a choice of two treats I liked. That was enough to paralyse me until I asked myself for the tenth time what does my stomach want. I will rant about how much easier it is to travel on the Underground than on the TTC another day. And how English society accepts and naturally accommodates invisible disabilities.
As for relationships . . . in England, they were, in the words of my neurodoc, like a “comfortable old shoe.” Balanced, pleasant, vital, stimulating, and most of all, to my amazement, everyone looked at me as if they wanted to talk to me, as if they were enjoying my conversation. As my neurodoc put it, I wasn’t having to navigate and think my way around them and our conversations – even when a conflict arose out of my inability to express my (rather complex) idea. I was a little frustrated with myself, to be honest. But that didn’t matter. Hours later, my idea was picked up and expanded upon by one of my relatives. I was floored. And then there was the fact they told me over and over to ask for help, and when I did, help was given. Communication happened. When I needed it. Not in some time-delay fashion where I just have to wait until it’s convenient for the other no matter the effect on me.
Waiting isn’t just a matter of patience; waiting can be a matter of health and functionality. People here can’t see the difference between when waiting is about patience versus when it will affect a person’s functioning.
And now I’m back in Toronto. And once again I have to navigate people’s communications styles. One person does it one way; another does it another way. I have to remember which is which and be okay with whatever method the other person informs me is the only way they’ll communicate with me. In England, everyone texted or emailed or phoned, whichever suited me best because none of them seemed fussed about using smartphones or old-fashioned telephones or computers. Any works. They even know how to check their bloody emails and voice mails; I didn’t have to check up on them to ensure they’d received them (once I had the correct address). Or try and remember what message I left. Here, it’s a fucking nightmare of “I’m not going to blah blah blah.” (Or I’m too busy. Or I’m not interested in talking about that. Or you’re not my family. Funny then how my older cousin saw me as family.) Here, no one ever says: oh, hmmm, Shireen is the one with the brain injury, maybe we should ask her how she communicates best in order to reduce the effort it takes for her to reach out and be able to understand us. Maybe we should be the ones facilitating communication so that she’s not isolated and she has the energy to live her life, to get through her treatments, to be less stressed. I ranted that at my neurodoc. “Good point,” was his response. Uh-huh.
After my health care team saw the dramatic change to happiness in me – sans needing any positivity or inspirational shit despite still dealing with my brain injury and PTSD – they asked: are you moving?
I didn’t answer really. I was born in London. I’m a Canadian but also a British citizen.
Where do I belong?
My neurodoc noticed and said: you have unfinished business here.
He’s right, but the tediousness (my neurodoc’s word) of most of my IRL relationships will kill me. Anyone who denies the social biology of the human being and necessary interdependence is a fool. The destruction of our society won’t come from terrorism but from worshipping the gods of busy-ness and silos, from the fear of mind, soul intimacy.
And now I’m going to stomp off to watch Shaun the Sheep.