Friday, May 26, 2017

Healing the Brain Conference in Toronto

Brain injury is not treated. You may think it is, but what's considered treatment sidelines people outside of society and the economy. Sheer luck is the only reason people are able to work again. I attended the Healing the Brain conference about how to actually treat brain injury and bring hope back to 100s of thousands of people. I storified my live tweets.

Friday, September 23, 2016

Lunch at Planta Toronto

There are times when you just have to make a reservation to have lunch with your mother, to use the newest place to say; "Hey Mum, let's have lunch, you're buying!"

We went to Planta Toronto.

Since Grasslands, with its superb food and iffy service, closed, there's been no luxury vegetarian restaurant in town. No more!

I'll let you check out Planta Toronto's website for details on how it came to be and to peruse the menu (sadly, they don't list the desserts -- how can you drool in anticipation, beforehand?!). Here, I'll just talk the fabulous lunch, a timeout from my life of getting back my independence.

I've become rather accessibility conscious this year. I've always had trouble with heavy glass doors (looking at you Dark Horse) because of my seatbelt injury and brain injury weakening my shoulder, but since having had to adopt a cane to keep my balance while my brain adjusts to the flood of new visual information as a result of my eye surgery, I've become acutely conscious of accessibility as a big issue in today's society, like heavy doors sans automatic door openers.

Planta Toronto has an automatic door opener.

Planta Toronto

Dear sweet Lord, a restaurant that wants all possible customers to enter? In a time of our provincial government not enforcing the AODA (law mandating accessibility), this is Heaven.

The servers are casually dressed; the hostesses greeted us with a smile. We were immediately seated and asked if we would like water. Definitely! The young, friendly waitress returned with a swan-like glass jug filled with fresh water in which floated long slices of cucumber and lemon. She filled our intricately cut glasses that harmonized with the banquette fabric.

I admired the table. Cloth napkins! Do you know how long it's been since I ate at a place that uses CLOTH?! Too long, sigh.

The Table at Planta

We ordered drinks. People with money surrounded us, older men in the development business and women who lunch. A lot of us were asking our waitresses what they recommended or, if they saw our confused faces, the staff were recommending. Our waitress said: the Botanica is my favourite. Apple, cucumber, lemon. Light, refreshing. I do prefer carrot or citrus though.

Botanica at Planta

Our waitress was very happy to explain the menu to us, how it was designed for tapas or to have our own plates, whichever we preferred. If we preferred the latter but wanted to try a few, doggy bags were no problem. (Unlike more and more establishments, they boxed the leftovers up for us and placed them in stylish paper bags ready to carry with their easy-to-hold handles.)

Caesar salad was a beautiful plate of crisp romaine, cut and placed like layered palm leaves, with smoky-intense mushroom bacon, flashy candy-cane red-pink noodley ribbons of sweet-biting pickled onions, and a luxurious garlicky dressing.

Caesar at Planta

The rectangular Pizza Frenchie had a thick edge and thin crust with blackened-toasted circles underneath to provide flavourful crunch. The edge could have used more toasting but was good. Over a spread of what I think was cashew mozzarella, were too-few caramelized tiny squares of squash, dollops of lemon truffle cream, sliced 'shrooms, and lots of arugula that slid off the pizza altogether in one bite. Kind of made it obvious when the green was gone that there was not enough squash, slices of white mushrooms, and dollops.

The Frenchie

Dessert was -- wow!

Chocolate terrarium at Planta

Cold bites of raspberry sang fresh notes against the gooey salted caramel and deep chocolate sand of the brownies with the smooth peanut butter mousse providing alternating hits of peanuts and of a silky background.

Chocolate terrarium at Planta

We digested this delightful lunch over a cup of Assam-Darjeeling (their Signature Black Tea) for me and coffee for my mother.


The quiet, patient waiter who took our plates at the end asked us sincerely for any criticisms. Since I was floating on a cloud of chocolate blissdom, hard to come up with any in that moment.

Saturday, September 03, 2016

Did 2015 TTC Public Forum on Accessible Transit Lead to Improved Accessibility? No.

@TTCHelps got this button fixed. If only TTC's
system-wide accessibility was as easy.

The TTC is about to hold its annual Public Forum on Accessible Transit. So I thought I'd analyse its response to last year's as I reported on it in Fall of 2015.

Its Comments and Feedback Summary page includes the conversation on Twitter through the #TTCAccess hashtag, which I participated in.

Streetcar Stop Request Buttons Out of Reach of Priority Seat Customers

I brought up the problem of the stop request buttons on the new streetcars with the chief engineer during the Forum. Under the TTC's summary of streetcar design comments and response, the stop request buttons issue of not being near the priority seats was neither noted nor addressed. That's probably because they haven't amended the new streetcar design to add them.

Back Doors Require Upper Body Strength

TTC's Response under Conventional Bus Design

"Customers do not need to push rear bus doors fully open. Rather, a slight push or pull on the yellow bars will activate the door opening system and the doors will automatically open fully on their own."

That just negates my lived experience. If I tell you, you need strength, then you need strength. What is the TTC's idea of a slight push? What is the force in joules required? And how does that compare to the force a person with upper body impairment has?

My comment should have elicited a remedy note to the accessibility designer for new bus designs and should have been in the official TTC response that that is what they're going to do. Of course, I don't know if the TTC has a competent accessibility designer on staff. Perhaps that's a false assumption on my part.

Automated Stop Announcements

TTC's Response under Automated stop announcement reliability

"The automated stop call system is tested before the bus enters service. If it fails, the bus does not enter service. If the system fails in service, the Operator is required to call the stops verbally and the bus is removed and replaced at the first opportunity. Note that the stop announcement system is scheduled for replacement in the coming years as part of the new “Smartbus” CAD/AVL project."

Well, the drivers sometimes do, sometimes don't. David Lepofsky on Twitter asked people to complain when the drivers don't. It's a headache. Why does one have to consistently nag people to do their jobs, whether it's your physician to follow up on a referral or the TTC driver to call out the stops or the garage to ensure the stop call system works? Unfortunately, those of us with brain injury have to nag everyone about everything so we really would just like to be able to get on the bus and ride it like everyone else sans nagging. Is that too much to ask?

One good thing: they're upgrading it and said so. They've acknowledged it's a problem.

Subway Station Design

One comment: "Return the walkway at Spadina Station between the subway lines. It’s very hard to walk the entire walkway."

TTC's Response

"Unfortunately, it was not possible to continue to maintain the moving walkway between the subway lines at Spadina Station. The walkway machinery had reached the end of its useful life and walkways of that length were no longer manufactured. As a result, the TTC Board approved the walkway removal in 2004. Acting on ACAT advice, TTC added benches in the middle of the corridor between the two subway lines in 2013, so that customers with limited stamina could pause along the way, if needed."

I don't know about you, but I've been on very long moving walkways in airports, and where there are long distances, the airports have installed more than one. Benches are good but don't cut it.

This issue is strictly a lack of funding because of our Ontario government cutting stable operating funding, of past city and provincial governments stopping funding capital infrastructure like moving walkways, and now our new Mayor trying to cut the budget and our new Toronto Council not voting for preventative maintenance. You want a walkway at Spadina station, call your Councillor and MPP and complain loud and long. Do what people with a brain injury have to every day: nag.

Boarding Subway Trains

One comment: "On your University‑Spadina line with your new trains, the Toronto Rockets, the guard car is the very last car, and there might be some sort of safety concern here is if the guard is in the very back car. How is he going to see somebody trying to get on at the DWA with all the other people in the way?"

TTC's Response

"The Designated Waiting Area (DWA) is equipped with benches, bright lights, and a Passenger Assistance Intercom, and provides a safe place to wait for trains. TTC Operators are trained not to close the doors until all customers are safely onboard the train. Trains cannot leave the station if doors are not fully closed. TTC plans to further improve the boarding process in the future through the installation of cameras on each platform which will provide the train crew with an improved view of customers boarding and alighting along the entire platform."

They do not mention that they intend to follow more hostile-to-customers systems, which have no guard. The human dimension is what contributes to our sense of safety as we go about our daily lives in Canada's biggest city. TTC drivers on Twitter aren't impressed with management's approach to the DWA. My CNIB orientation mobility trainer has been pointing out the DWAs to me and the problems that come because they don't line up with the Guard, especially on the Bloor-Danforth Line where you can't stand near the DWA and then get in the same car as where the Guard is. Safety isn't just literal, it's also felt. When customers feel safe, TTC employees also are because customers feel connected to them. It's when customers become disconnected from drivers and Guards that the barriers to violent reactions to TTC employees come down.

Hasn't anyone at TTC read Jane Jacobs' famous book? Someone needs a refresher course on what creates safety. It's humans.

Fares for people with disabilities

Comments: "“Accessible should also consider the financial barriers that people with disabilities experience.”

“In most other major cities, individuals with disabilities are afforded the same discount as Seniors, because it makes for a more accessible public transit. Might the TTC consider doing the same?”

“Fare hike proposed is the opposite of what low income people can afford.”"

TTC's Response

"The TTC is working with the City of Toronto and various other city agencies on the Transit Fare Equity component of the overall Poverty Reduction Strategy. Recommendations to the Board on how best to deal with providing subsidized transit for Torontonians who are most in need will be made in early 2016."

The city is still thinking on this. Calgary was able to do it; why can't Toronto?

Better Information in Subway Stations

One comment: "Signs in subway stations announcing when next train is coming and the time are very hard to read. Are you going to improve readability?"

TTC's Response

"The customer information screens in subway stations are operated by a third party. Our agreement with them specifies the space available for customer information. We are currently reviewing the interface with a view to improving consistency with other TTC design elements and will take these comments into account."

So basically we're politely telling you we think readability is fine and we're not going to improve it; consistency is more important. And since maps are tiny, higher than a lot of short people, and inscrutable, I think we can safely say maps and screens will remain hard to read.

BTW I had no such problem on the London Underground. Maps and signs were huge and uncluttered and contained only the information I needed. Amazingly easy to read; made it amazingly less fatiguing to use the system.

Cognitive Accessibility

One comment: "You need to make TTC cognitively accessible, ditch numbers from subway line names."

I wrote about this issue on my blog on the 2015 Public Forum, subway line names, and signs.

TTC'S Response under Cognitive Accesibility [sic]

"Along with numbers we use symbols, colour and plain language specifically to help people with cognitive limitations. In addition, new Wheel-Trans eligibility criteria will welcome customers with cognitive impairments to the paratransit system, if they are unable to be trained to use the conventional transit system. More information will be available in 2016."

Interesting how they simply ignore the issue of changing the subway line names to numbers. People and companies ignore comments when they know they are in the wrong -- that the commenters have a valid point -- but due to pride or hubris, refuse to acknowledge and rectify their mistake that causes so much misery and rage from confusion and frustration in trying to navigate an impossible system.

One should not have to be trained to use the TTC.*

I used the London Underground, a system I haven't used in decades, with its 11 lines far easier and with no guidance than I have the TTC, which I've used week in and week out.

Cognitive accessibility means that colours, signage, subway and streetcar line names are all comprehensible to those with memory, navigational, cognitive issues. The fact that they are not is why the TTC has become harder to navigate not easier. Changing the subway line names to numbers while pretending that they haven't changed the names and increasing the sole use of streetcar numbers sans names in the same vein of ridding official announcements, maps, etc. of subway line names is only spreading the cognitive confusion to the entire system.

Wheel-Trans exists because the main system has failed.

CEO Andy Byford will not achieve beacon status when the TTC refuses to acknowledge it has decreased its cognitive accessibility and perpetuates its colossal error in changing subway line names to numbers.

I wrote CEO Byford about the subway line names. Brad Ross, corporate communications replied but I am still awaiting a formal reply from Byford. Ross indicated that the names remain in all TTC printed material and maps and that in a PA they will say the line number first followed by the name. Neither is true. Formal announcements over the PA leave out the names. And maps use numbers only for subways, streetcars, and buses. Maybe the names are in the legend, which adds to cognitive difficulty in reading a map (you need memory to read a legend and translate to the map).

To summarize:

The TTC will not install stop request buttons next to priority seats on the new streetcars.

The TTC will not design future "accessible" buses with back doors that anyone can open.

The TTC will not reinstate accessibility between Spadina stations.

The TTC will not reverse their colossal mistake in renaming subway lines and still don't use colours and signage effectively.

The TTC is extending their mistake of using numbers only for subway lines to bus and streetcars, decreasing cognitive accessibility in the entire system.

The TTC will not improve safety but replace humans with cameras, as if cameras can respond to people in distress and drivers can multitask driving trains with customer safety.

The TTC's maps and customer information screens will remain as tiny and inscrutable as ever.

The City of Toronto is dragging its heels on making the TTC affordable for people with disabilities.

The TTC is working on improving the stop call system.

One yes to 8 nos.

And that doesn't include all the other comments on lack of accessibility. What then is the point of the TTC's Public Forum on Accessible Transit when they don't actually rectify real concerns?

The Forum isn't just a gripe session. It's the TTC's access to free smart advice on how to become the beacon of accessibility to the world. Why then is the TTC ignoring most of it?

The TTC politely ignoring the real problems of people with disabilities accessing a publicly funded transit system is why people have begun holding disruptive protests like #AccessibilityNow.


*Full disclosure: due to eye surgery and resulting huge improvement in vision, I'm having to be retrained to walk, including how to use the TTC. I know the TTC, I've been using it for decades. But I have to relearn how to cope with its inaccessibility -- you wouldn't believe how much some of its stairs are tough to use because of lack of contrast to show depth or mesmerizing grout lines, and that's just one of many things I'm having to re-adapt to -- and how to use its features like the DWA. The CNIB is providing this service through orientation and mobility training. Relearning how to use the TTC would be far easier if it was the London Underground because that system is accessible, despite its size and many of its stations being ancient. So yes, I'm being trained to use it. But a truly accessible system would not necessitate training beyond what newbies, eg, children or new Torontonians, need.

Friday, August 19, 2016

Come Out for TTC Accessibility for All!

Accessibility of all kinds is pitiful on Toronto's TTC.

Wednesday, August 31, 2016 at 4:00pm
Please join us at Yonge and Bloor
To protest this blatant injustice towards our most vulnerable citizens.

When you protest the TTC's abysmal treatment of the disabled, we all win!

D!ONNE Renée is the organizer behind this event. If you have any questions, want to throw your virtual support behind her, or have comments, reach out to her via email or on Twitter at @OnElectionDay.

Click to listen to audio announcment.

The announcement reads:

Accessibility is a Right -- Not an Option

On Wednesday, August 31, 2016 - Between 4pm - 8pm, on behalf of community and Public interests, an #AccessibilityNow! TTC campaign/protest will take place starting in the Yonge and Bloor area to raise issues concerning discrimination based on disability, barriers, and ableism in transit and its services.

The Accessibility for Ontarians with Disabilities Act sets out the interpretation for "barriers." Too many barriers exist within the TTC. It is not acceptable to take a "minimum/at least" approach in improving access for all. The standard should be a model that reflects an equal to or greater than the access that is currently available, model. The equal to or greater than the access that is currently available model is a model of equity and equality.

People have a right to access public systems; in this right, people should feel that they have the option to be free to choose whether they access those systems or not. We are all not free just to be.

Approximately 35 out of 65 subway stations are "partially accessible," on good days. Functioning equipment = good days. "Partially accessible" means that all patrons don't have the option to access the system for lack of elevators, Braille information and helps, proper signage (large print, clear, large-enough digital boards), functional escalators, inaccessible entrances/exits (now including Presto Card gates and readers) to subway stations, buses, streetcars, and extraordinary Wheel Trans wait/scheduling. Plus the TTC worsened accessibility when they began replacing the names of Toronto's subway lines with confusing numbers.

TTC (and transit across Ontario and Canada) must be proactive in its operations and provide equality in its services and not discriminate against anyone, including people with disabilities and/or people requiring accessible access in order to use its systems. TTC was able to find money to implement Presto Card systems into its subway, bus, and streetcar services even though the gate systems being used at subway and bus stations are all not accessible; but TTC seems to be unable to be actively proactive in ensuring that all areas of TTC are fully accessible.

While this event will take place in downtown Toronto, the issues and concerns being raised affect all of Ontario and Canada. We want everyone to have the ability to travel independently, or in group, as we so choose.

We want a barrier-free Canada.

Will you help?

Will you join the protest and invite others to do so too? Will you gather with community in accessibility advocacy? #AccessibilityNow #GetItRight #AODA #AODAFail

Monday, June 27, 2016

Letter to TTC CEO Byford re Subway Line Numbers

I wrote the following email to Mr. Byford and am told I'll be receiving a formal reply.

Dear Mr. Byford,

As you know through the TTC's generous donation of ad space, June is Brain Injury Awareness Month. I have a brain injury. The TTC allows me to be independent; however your decision to rename the subway lines to numbers has jeopardized mine and others' independence, and I have a question about that.

Numbers are confusing and meaningless. Numbers require memorization. And people with brain injury have poor memories. For example, we have to remind ourselves where we're going. We're not likely to remember a number, no matter how often we repeat it, but we can remember names because they have meaning and context. The Yonge Line runs up Yonge Street. If we want to go to Yonge, we know to head to the Yonge Line. We don't know if Line 2 is Yonge or 4 or maybe 1. Translating from a number to a name requires cognitive effort, eg, from Line 1 to Yonge Line to Yonge Street. People with brain issues don't have the cognitive resources to do that without being heavily fatigued. Some simply cannot. I happen to know the TTC quite well and have good numeracy skills, but even I find @TTCnotices and radio traffic announcements confusing and thus frustrating. No one I've spoken to with or without brain injury understand the numbers. Even when I try to explain them, I get blank stares and frustrated comments: why don't they just use the names? They wonder: When will you rescind the change to numbers, return our beloved TTC subway names to us?

When you confuse people, you frustrate them. And when you frustrate people with brain injury, many of whom also have PTSD, you increase the risk of rage. We have enough problems with TTC rage without the TTC introducing a new source.

You have set a noble goal of making the TTC a beacon of accessibility. I have used several English and non-English subway systems. New York's I found the worst to navigate because it uses numbers and letters. I recently used the London Underground. The Underground is far more accessible and inclusive for those of us with cognitive challenges than the TTC. Its subway line names have meaning; their use of colours enhance navigability. If they had used numbers, I as a tourist, would have been completely lost. Plus I would have had no sense of place or London's history, which as a tourist I value. Taking away the subway line names from the TTC has also taken away that historical sense tourists and Torontonians value so much.

Names are inclusive.

Numbers are not. I wrote on why numbers are not (evidence-based research is down at point 4):

You cannot make the TTC a beacon of accessibility as long as you use subway line numbers. My question: When will you delete the numbers and restore word names to the TTC's subway system?

Thank you for your time and consideration.

Yours sincerely,
Shireen Jeejeebhoy
Cabbing it not TTC'ing it as I recover from surgery and being less stressed for it.

Monday, April 11, 2016

Party Politics Appeals to this Non-Partisan Blogger -- For A Moment

I watched the NDP's Convention Live Stream on CBC News' iPad app, well, I watched Tom Mulcair's speech and the voting afterward while I did the laundry or drank coffee and recovered from my month of crowdfunding. I thought as I watched: it's appealing being a party member. For a political junkie like me, it looked like a lot of fun!

Being a Canadian, I am free to vote in our elections for whichever candidate and party I want to -- if I was a party member, I could even vote against the party I'm a member of since every vote is a secret ballot and my ballot is exactly the same as every Canadian citizen's ballot. Being a non-partisan blogger and Canadian, I am free to choose which party I agree with at any given moment without feeling like I'm betraying anyone.

But there is no party of non-partisan Canadians.

The closest I got was the pre-social media group of non-partisan bloggers that James Bow founded. Many of us transitioned to social media back in 2008 or later . . . about the same time I outed myself by name and gender and expanded my postings to beyond politics. It got a little lonely.

But as a partisan Canadian, you're not lonely.

You get to be part of a group. You get to have your say and affect a party's policy direction. You get a say in who our future Prime Minister or Leader of the Opposition will be. And you get to talk shop, debate heatedly, feel like you live in a democracy, and go home exhausted, on a high of being with other people like you.

It sure is appealing.

But ultimately, I'm not suited to group-think. I like groups that gather around other things like the Brain Injury Society of Toronto, where thinking or believing in a similar way is not the entrance to the group. In its mission, I belong. But in thought, I stand outside this group.

My freedom in non-partisanship comes at a price.

Monday, March 14, 2016

It's Getting Hairy on the Concussion Crowdfunding Front!

I want to publicly thank the many people who have encouraged and supported me in my efforts to update Concussion Is Brain Injury. Your kind words have lifted me up and kept me going.

However, I’ve hit a bit of a roadblock and need your help to climb over it.

Today’s publishing world is moving towards readers essentially pre-ordering books by joining in crowdfunding. Publishers want to see tangible interest in the books they think are worth publishing before they proceed. My publisher, Iguana Books, and I believe Concussion Is Brain Injury is worth seeing the light of day, but it won’t unless my crowdfunding efforts succeed in the next two weeks. So far, we’re not even at 10 percent of the goal. Eek! 

Concussion Is Brain Injury needs a rewrite to include a wealth of new brain injury research from the past three years, along with my own remarkable improvements and the methods I’ve used to achieve them. Crowdfunding will fund the editing, cover design, and the all-important marketing of my book.

this is an amazing book that really sheds the light on how little is known about concussion,and brain injuries my good friend Shireen Jeejeebhoy now  wants to publish a second edition but can only do this by raising money through crowdfunding .  Shireen Jeejeebhoy  has new ground breaking new material that challenges the status Quo about brain injuries and needs to be read and heard” - Nancy Howson as shared on Facebook.

Seeing readers who’ve put their money where their interest is will spur me on to write faster, which as you know can be a challenge with brain injury. But I’m up for it, to get Concussion Is Brain Injury out and into readers’ hands by the Fall. Are you?

If you have any questions about the book or PubLaunch, please don’t hesitate to email me through the yellow button on my PubLaunch web page or leave a comment on this post. Thank you for reading this and considering participating in my quest!!

Thursday, March 10, 2016

Crowdfunding is Nail Biting!

Crowdfunding is so risky. You're seeing if anyone is interested in reading your book before you even put it out, or in the case of my biography/memoir Concussion Is Brain Injury, if anyone is interested in reading an update. Many indie authors are excited about crowdfunding, but I always was wary. I've taken risks with my health in order to get better, but publishing my writing . . . not like this! It's 10 days in, and it's not going so well. Kind of disheartening. I've received wonderful encouragement, notes of congratulations, supportive messages but so far, only 10 tangible backers -- only ten people and organizations have said with their cash that they want to read Concussion Is Brain Injury and believe it's worth backing.

How about you? Are you thinking about it, wondering if this is just another book on concussion -- yawn -- or still mulling over whether to back it? How about this, how about another excerpt? Will that help? I hear a resounding Maybe! So here it is:

Waiting, Waiting for the Worst News

April 3rd, I had my first IME: that’s Independent Medical Exam for those of you blessedly innocent of the medicine-through-insurance-company system. The idea is that after you are injured in a car crash, your doctor refers you to a physiotherapist, say, and the physiotherapist fills out a treatment plan for the insurer. Since naturally the GP you’ve been seeing for years can’t be trusted to know your health, the insurer, with governmental blessing, sends you to a doctor who knows squat about you because that way they can be trusted to advise what you really need. And to ensure true independence, the insurer pays the IME doctor so that s/he has zero obligation to you, the suffering claimant, under the do-no-harm rubric of society.

My first IME arrived the afternoon of Monday, April 3, 2000.

I was riddled with anxiety the night before because this IME was happening awfully early in the process. I’d been through Ontario’s insurance accident benefits system nine years earlier. I had a sense of how this system of expert-versus-expert worked, with me and my health care team struggling against it to make me better.

It’s horrible.

It’s a ritual of being told the date of your appointment and being told you have to show up, even if it means cancelling the medical appointments designed to get you better. It’s a ritual of the doctor examining you in such a way so as to determine you are fine. It’s a ritual of pain, confusion, fatigue that attacks your honesty and your health, yet if you don’t remain calm and be co-operative, you will be blackmarked. That means denial of your treatment plans — the lifeline to getting better. It’s a ritual of waiting to hear the verdict while reports are written and the insurer decides if they’ll pay the clinic or therapist to continue to heal you. It’s a ritual of you begging the therapist or clinic to keep you on while we all wait — or after the plan is denied so that your treatment won’t be interrupted, for interrupted treatment means setbacks, maybe even permanent disability.
But I knew the system. I knew how to behave, what to say. I knew how to protect my muscles and other parts from being re-injured. Yet I felt completely overwhelmed, terrified that the IME would derail my plan of action to get back to writing Lifeliner.

Between the severe pain in my right injured shoulder and my fear, I couldn’t fall asleep the night of April 2nd. I remember lying on my back, praying for release from this hell. I couldn’t fathom why the insurance company had scheduled it only two or so months after my crash. In my experience, they usually waited longer before they began the IME ritual. Maybe it was because I had successfully fought them for good treatment and income support after my 1991 crash when they had begun questioning my treatments. Maybe they recognized me as a claimant who would not be deterred in my fight for my health and who knew the real expense of treatment and lost income. I don’t know.

I only felt confusion and fear.

And then . . .

I sensed God’s presence over my head like a golden light looking down upon me. It reminded me of when I was six years old. I was sitting on the floor in Sunday School with the other children in this new land my parents had brought me to. I was probably sitting lotus style, for I hadn’t yet mastered cross-legged though was trying to in order to fit in. One of the mothers sat on a chair in front of us, her acoustic guitar on her lap. I stared at her straight black hair shining in the sunlight while her voice sweetly trilled one of the songs I was coming to know: “Jesus Loves Me.” The other kids were singing along with her. All of a sudden I felt Jesus near me as if he was a golden light around and speaking within me. I knew without a doubt that Jesus loved me. It didn’t matter that I was considered a brat, bossy, stubborn, relentlessly asking questions, too dark, too light, too small — it took over a year for me to catch up to the nutrition status of Canadian children — Jesus loved the whole of me. And then the presence was gone. It was back to normal in that room — except that my heart sang that at least one being loved me no matter what.

All that ran through my mind as I stared up at the ceiling in April 2000 and felt that almost-long-forgotten presence as God reassured me and stopped the thoughts running around my head like a hamster on a vicious wheel. It would be all right.

I slept.

That treatment plan was stamped approved.

I continued my physiotherapy and acupuncture and psychology appointments.

And my relationship with God changed dramatically after that.

A good thing, for it wasn’t long before the news worsened.

I had no idea when I went in for my regular weekly appointment with my psychologist that he’d be changing my life from one of planned rehabilitation to one of waiting. Waiting. Waiting. Waiting.

For the worst diagnosis in my life.

Luckily, I had no affect — that is, no emotions.

My emotions had been severed from the rest of me. Sometimes they blew through a short circuit in my damaged neurons and rocked my world into a bawling mass of pain and confusion. But most of the time, they slept. So that’s how I waited: anxious, forgetting about it, no feeling, disbelief.

Oblivious in a way.

The day my psychologist sat down in front of me, leaned forward to look at me eye to eye, and told me what he believed -- that I had a closed head injury and needed to have my physiatrist refer me to the right specialist -- I did what I was told. I did it though I couldn’t comprehend his calm bombshell in any way other than intellectually. You have no idea how much your emotions help you think until they are shut off like a dried-up well. Yes, I understood his words. Yes, I followed his instructions. Yes, I acted and spoke and told people as if I understood what he’d said, as if I believed what he said. The logical part of my brain continued to work, albeit glacially; it told me his diagnosis made sense.

But I couldn’t absorb it.

And so I forgot about it.

I returned to rehabilitating my neck and shoulders. That I understood, for I had suffered similar whiplash and seatbelt injuries in 1991. I knew who to see, what to do. I knew about the métier of insurance companies. I knew about keeping on top of the paper trail. I knew everything.

But I didn’t.

When my psychologist told me he had to teach me a visualization exercise to reach the peace deep within me, for I would need it in the months to come, I had no idea how correct he was. I couldn’t fathom the brutal hell of brain injury that drowned my life in a tsunami that swept over me like a black, invisible monster. Even years later, I couldn’t perceive the churning waters I was in. My subconscious had no such trouble.

One day I told my psychologist of a dream I had.

I was in a cove. Before me were boulders rising out of the water. Behind and to the left and right of me lay the land. Amorphous green trees surrounded me. The black, glistening boulders loomed out of the calm water of deceptive depths to block my escape. Every time I clambered over one, another would rise up ahead of me. Always before me were ragged rows of water-rubbed round boulders and rocks, their blackness both glistened and sucked in all the light.

I couldn’t escape.

I still cannot.

The depth of the water beyond the boulders terrified me, for I didn’t know what lay beneath or if a boulder would suddenly pop up.

As I waited to see the specialist, I kept on, perceiving only the moment, following my schedule as best I could. My memory problems were becoming too obvious to ignore any more. I had trouble reading the numbers in my day timer. I could read them, yet I misread them. My attention hopped from eating to my pain to my husband’s deep voice to my dog woofing at the door to my fatigue to trying to remember what I was supposed to be doing, all in about a minute. I had to buy a PDA. I chose a Visor. This appealed to my computer-loving heart — I hadn’t yet faced up to the fact that my ability to work with computers had been severely damaged. I could still use one, but I couldn’t trouble-shoot them at all (I had always been my family and friends’ personal IT department) and typing or mousing or trying to read the screen quickly brought on extreme tiredness and pain.

By the time I got my Visor, my assessment appointment at the Toronto Rehabilitation Institute (TRI), Rumsey Centre, came up. I was still waiting for my physiatrist appointment. You would think the possibility of a closed head injury would open doors tout de suite. Nope. I waited three months for the physiatrist, about four for the TRI appointment, and then another couple for the psychiatrist.

The Occupational Therapist (OT) who assessed me at TRI said I was typical for closed head injury. She recommended I be admitted to the one-on-one outpatient neurorehab, pending official diagnosis by the psychiatrist. The logical part of my brain nodded; the coping part wept in relief that I was typical because then my experience was real and the doubting Thomases in my life would have to see my injury; the emotional part burst through briefly and decided it was having no part of this conversation.

I think after that, I didn’t talk much about it. Or think about it. I focused my fractured attention on my insurance case, my physiotherapy and acupuncture and psychology appointments, my husband’s life, and the endless IMEs I was sent to.

The day I saw the diagnosing psychiatrist, I didn’t know what I feared more: being told I had a closed head injury or being told I was malingering.

At least the wait was over.

Except it wasn’t.

The psychiatrist said he was positive I had a closed head injury. Unwittingly, he parrotted the OT when he said I was typical. He ordered a SPECT scan even though he said it would show no damage so many months after the injury. But he wanted me to have it anyway for research purposes at least.

I waited. What’s a few weeks after so many months of waiting? I was so afraid. I didn’t want to be this injured. I was supposed to be writing Lifeliner. I had been lapping up life right up until the moment of the crash, when seconds after our car had been slammed into twice, I sobbed like Job, like I had lost everything: my family, my job, my friends, myself. I had picked myself up minutes later with a plan: I would attack rehab like a full-time job and be back to writing in three months. Later, I amended it to six. Then September 2000 arrived, and I was still not back to writing and now this awful diagnosis sat over me.

When the psychiatrist’s office called me to come in a week earlier than scheduled, I told my husband in my new monotone that something was up. But I refused to face what my mind already knew. I was terrified and still worried the psychiatrist would say I was just malingering. I was a neurotic hypochondriac. All the problems I was starting to become aware of — brain injury takes away your ability to perceive yourself — were “in my mind.”

That’s what he would say, I thought to myself.

I didn’t know which was worse: to have a closed head injury or to have the people who loved me be right: I was malingering, depressed, and needed to get on with things.

I had a closed head injury.

The diagnosing psychiatrist said there was only one treatment, experimental yes, but the rest were placebos. I had two years in which to improve; after that, wherever I was at in two years forever I would remain. But Aricept showed promise to ease short-term memory problems. I needed to take it. He wanted me in the research trial, for it was my only chance.

Only one problem: it was contraindicated for people with asthma. And my asthma had returned with my brain injury like a coughing dog. It freaked me out. So taking a drug that triggers it? Shudder. My husband was furious I didn’t say yes to the drug instantly. As he drove, we argued over the Aricept all the way home. He said in frustration: I was to take it. Why wouldn’t I take it? I don’t accept his opinion. I should take it.

The thought that this was my only chance confounded me. Maybe I should take it. What if I didn’t take it? Would I be forever injured? And anyway, how could I be injured? The scan results were definitive. The psychiatrist was adamant. My psychologist and TRI were all in agreement: I was typical for closed head injury. I had a brain injury. I needed rehab and treatment.

Later, alone in the kitchen with my dog, I called up my father to tell him the news. He and I spoke clinically about my diagnosis, probable outcome, and the drug because that’s how we talk all things medical in my family. But my injury had changed me, though I knew it not. I couldn’t make a decision to save my life. And so in my new, unfamiliar state of indecision — on top of my normal way of seeing and arguing both sides first — I suggested I should take it. My father huffed: I shouldn’t take it. I don’t accept his opinion. It’s your decision.

What should I do? Whatever I did, someone would be mad at me. I didn’t want anyone to be mad at me; I only wanted to get better.

I phoned my mother at work.

You need to know something about my mother. When she’s at work or scheduled for work, she ain’t coming over or taking me to a doctor or to the ER. It's a British cultural thing, and I was used to figuring out how to take care of myself. But as soon as I heard her voice, I needed my mother beside me instantly. My voice cracked. I heard my voice in disbelief. My voice doesn’t crack. I had mastered my emotions decades ago. When I cried, it was rare and not from zero to full blowout in an instant, and I didn’t cry in front of people. Surely, hearing this strange behaviour and awful news, my mother would come right over. Surely, she could find another nurse to take over her shift on the cancer ward for a couple of hours at least. A child in distress would be accepted.

She called my sister to go on over to my place in her stead.

My sister didn’t really know what to say. My thoughts were smothered; my emotions had disappeared again. So I didn’t know what to say either. That’s what I remember most about that time after my diagnosis: not knowing what to think or feel, except for sudden cracks when emotions rocketed out, only to disappear as the cracks sealed up again.

My best friend, BF, called. Relief. In her take-charge voice, BF prescribed tea, some croissants I had bought on my way home from the psychiatrist, and chocolate. After work, she and her husband brought me a chocolate cake. I remember the round cake frosted in waves of chocolate icing sitting high on its green plastic plate, covered by a clear plastic dome with corrugated sides. It was for medicine, she told me, not for sharing. They left. I took it into my kitchen, my dog trailing me, and ate a slice. Fatigue, confusion, fear blanketed me like smog.

I felt very alone.

Copyright Shireen Anne Jeejeebhoy 2016

Tuesday, March 01, 2016

Crowdfunding for Concussion Is Brain Injury

I write on my other blog about brain injury aka concussion. As you may have guessed from some of my posts, brain injury has become a big topic for me, not only in trying to describe it, but also to talk about the lack of understanding, the promise of new treatments, and advocating for accommodation. I wrote a book on it back in 2012, and I always intended to update it.

I'm finally ready!

Today, I’m leaping into the world of crowdfunding. It’s a big risk because you’re asking people to put their cash and their faith in you towards launching your books out of your computer and into print, to take what only you and a few others have seen and turn it into paperbacks and ebooks that anyone around the world can read. I’ve always admired people who crowdfund. Their inspiration, my editor at Iguana Books, and my own circumstances have combined to make me take this leap at last for Concussion Is Brain Injury.

The crowdfunding is to update it. I want to make it better for readers. I want to enrich and enhance it with ground-breaking new sections that challenge the status quo, sections on the raw reality of relationships, the truth about our emotions, my thoughts on CTE (Chronic Traumatic Encephalopathy), faith after injury, rehabilitating reading in the knowledge economy, and a promising new treatment that I kickstarted.

To that end, I need your help to fund the services I need to bring this book to readers. The funds raised through PubLaunch – a crowdfunding site designed specifically for authors and readers – will go towards professional editing, a new exciting cover design, better packaging, and a robust marketing campaign. I have set up some great rewards for you in return for your generous support, including prints of my original photography, special edition hardcover copies, and copies of my previous books.

The target of $11,000 (Canadian) will cover all expenses. Won’t you join me in making this second edition happen? Please click the link below to check out the campaign:

I look forward to you participating!

Tuesday, February 02, 2016

Speak Up for Accessibility in TTC Survey Till February 11th

The TTC is running a survey purportedly on service standards yet with nary a word on accessibility and skewed towards not building subways.

Service includes accessibility. Service includes how easy it is to use the system. Yet the survey doesn't include one question related to cognitive, physical, or mental accessibility, other than pitting the number of route transfers against local bus options. That should not be an either/or option.

This survey is strictly geared to the young, healthy downtowner who already has subway access. It seems like it's designed to justify not extending the Sheppard subway line to Scarborough Town Centre as originally designed, perhaps cancelling the Scarborough subway, and putting off the Downtown Relief Line.

Route transfers -- the bane of my life -- is the only remote nod to accessibility.

The best way to get attention is to stay focused on one or two things: route transfers and subway line names. So I urge you to take this survey and select the option "Reduced need to transfer from one vehicle to another" everywhere it's mentioned as the Most Important. Or if it's not in one of the options but "Routes that are more direct -- on major roads only (faster travel and longer walks)" is, choose it as Most Important, for it's code for subway line.

When both options are listed choose "Reduced need to transfer from one vehicle to another" as Most Important because it supports both extending the Sheppard and Bloor-Danforth lines as well as putting in more bus routes. In this case, you may also see an option for "Shorter walk to station/stops" or "Routes that are less direct -- serve local neighbourhoods (slower travel and shorter walks)." These are code for Scarborough LRT over extending the Bloor-Danforth line; same with Sheppard Line. Choose those as Least Important when choosing "Reduced need to transfer" or "Routes that are more direct" as Most Important to emphasize you want the TTC to build the bloody subways already.

Fighting for more local bus routes will soon be easier with Uber coming into the market anyway, so we don't need to agitate for those. But we do need to agitate for subways -- a proper seamless transit backbone, not a hodge podge of subways and LRTs-trying-to-be-subways, requiring more energy from us to use and transfer from one to the other.*

You will then be asked either/or questions.

Continue to choose for fewer transfers, eg, choose "Service that allows me to make my trip on one vehicle, but involves more stops in local neighbourhoods resulting in a longer overall travel time." This is obviously a bus that goes from A to B. The alternative "Service that provides a more direct service, but requires one or more transfers resulting in an shorter overall travel time" describes adding an LRT and transfer point at the end of the Bloor-Danforth and Sheppard Lines instead of extending the subways.

Choose "A longer walk to my stop if it means a shorter travel time to get to my destination." This is code for subways because for some reason, the thinking is subways always require long walks to get to them. (In London, UK, that's not the case because they've continued to build subways over the decades unlike us.)

"A shorter walk to my stop if it means a longer travel time to get to my destination" is code for LRTs (or buses instead of subways) because the expert opinion is walks to LRT stops are always shorter than subway stops. Um, no.

If you get an either/or question about buses, I chose "walks to/from bus stops with less direct and less frequent service through local neighbourhoods resulting in longer overall travel time" because buses specifically should be about local access and short walks. The alternative is about using buses instead of LRTs, streetcars, or subways. I don't feel like being shoe-horned into buses instead of being able to use a streetcar or subway.

You will then be asked to rank your top 4 priorities. Put "The number of transfers you are required to make" at the top and "The time it takes to walk to/from your stop" at the bottom. Yes, the latter is important, but this is code for not building more subways. If people say they want shorter walks, the experts will say, see, people don't want subways. They want LRTs. I put second "The time you wait for the bus/streetcar/subway" because frequent service on any kind of route is important plus it emphasizes the need for subways.

Speaking of subways, in the final screen asking for your opinion about the survey, in the box where you can type your thoughts, ask why no accessibility questions and to change the subway line names back to their original name and ditch the numbers. An example:

"Why were there no questions about accessibility? Why no questions about subway line names? Changing the names to numbers has made it harder to use. Please change subway line names back to their original names and ditch the numbers."

Here’s the survey. Please take it and speak up for the only accessibility issue that they address -- reducing transfers -- and speak up for restoring subway line names. Thanks!

*I believe we need a coherent network of buses for local use, LRTs as feeder networks, and a robust subway network mirrored on the surface by buses that cover off the streets in between subway stops for local commuters. We do not have a robust subway network at all. London, UK is a great model. Using LRTs instead of subways ignores how geographically large Toronto is and the increasing volumes of people who need to use high-speed public transit.