Tuesday, April 26, 2016

I Survived the ICU

So, where was I…?

The last time I posted, I had the flu and was pretty miserable. It was the precursor to a roller coaster ride into a very dark place.

The flu turned into pneumonia, which sent me to the hospital in the middle of March. There was a trip to the ER, admitted into isolation, and then to the ICU with Acute Respiratory Distress Syndrome (ARDS — only click on that link if you enjoy chills going up and down your spine). Interestingly, this may have had more to do with my asthma than my being immunosuppressed. Anyway, I was put in an induced coma on a ventilator, and had an emergency tracheotomy.

 Photo credit: Ken Allen

Soon after, I came as close as it is possible to dying, and actually flatlined for 10 seconds during another nerve-racking event.

We figure that officially makes me a zombie.

What? Too soon?

I remember none of it. Well, that’s not entirely true. There is a blank space between the several days before I went to the ER and when my memories started emerging again around March 30, just after waking up with the trach. I was sedated through much of the really scary stuff, leaving my family to cope on their own. Not particularly nice of me, but when you’re given enough sedation to down a horse, there isn’t much choice.

It wasn’t actually enough sedation to down a horse. I fought it hard, so it was enough sedation to put four men under. I find this endlessly amusing.

I’m really grateful to Ken for taking the photo of me sedated and in isolation, for knowing that I’d need it. It helps make the whole thing more real. Although truth be told, part of me is convinced that it is an elaborate Photoshop prank.

Given the crashing episode, everyone decided to be extremely conservative in how my case was approached. After waking up, I spent the next 10 days in the ICU, then was moved to a ward.

And was on a ventilator until two weeks ago. Which meant I spent 14 days being conscious, but not able to talk. I’m sure you can imagine my reaction to that!

It was ... “interesting.” A separate post will follow about that part of the experience. For now, suffice to say that I will never shut up again.

I’ve been home for a little over a week now and am getting stronger every day. It’s going to take a while to get back to normal — lying in a bed for 33 days decimates your strength and stamina. I’m just being good to myself, eating as much as I can, and taking however long I need to get back to normal. And waiting for the tracheostomy stoma to close so I can really start to talk again.

There is so much about this experience that is overwhelming and deeply emotional. Especially hearing my family’s stories of the first two weeks when things were so dire. Noticing the way they keep looking at me with relief and wonder in their eyes, making sure I’m still here, still me, touches my heart and makes me realize how close it was. Which is also deeply weird, because my experience is, as I mentioned, of a blank space and waking up with the trach, extremely weak, but feeling remarkably like myself.

And that makes me a very lucky woman. To go through everything I did and come out the other side physically weak, but mentally just the same is fairly close to a double miracle. Both my GP and my rheumatologist attribute this to me being a healthy person prior to the nightmare. Which also sort of amuses me, what with having a chronic illness and all.

I am overwhelmed with the gift of life I have received.

I cannot say enough about the way my family (both biological and chosen) pulled together and rallied around me, their love carrying me through. There are so many moments that I remember — and a whole bunch I don’t — that made this hard thing easier for me.

I’m also so grateful for the support I received from my friends and people in my “real life,” as well as online communities. The comments on my sister’s Facebook posts, the prayers, the thoughts that went my way helped immensely when I was stuck in the ICU, scared and silenced.

And then there is The Boy. My rock, my safe person, the one who held it all together, took care of Lucy, came to see me every day, and dedicated himself to making my first week home as easy as possible. Thanks to him, the reentry into life was a gentle and protected slide.

There is so much more that I’ll talk about in later posts. For now, I’m going to enjoy being alive and being home.

 Photo credit: David Govoni

Wednesday, March 02, 2016

Barriers to Creating Accessible Housing, Part I: Ontario Building Code Accessibility Standards

As you may be aware, I have been doing advocacy work in accessibility for many years, serving on a variety of committees. In the last three years, I have been involved in the R-PATH Committee, which advocates for accessibility in Toronto Community Housing (TCH). I have long been very frustrated with the lack of usable accessibility standards and usable design in the built environment. It’s been wonderful to be part of our committee that, in collaboration with TCH staff, have developed standards that exceed the Ontario Building Code, and which will accommodate present and future accessibility equipment, making for actually usable design.

Unfortunately, this is a fairly isolated endeavor. The rest of the industry is still riddled with barriers.

A bit of statistics
At present, 1 in 7 people in Canada (14-15 percent) have a disability. Mobility disabilities are most common at 11 percent or about two thirds. With the baby boomer generation aging, it’s expected that the number of people with disabilities will increase.

In 2036, 1 in 5 (or 20 percent) will have a disability. Assuming that the ratio of disabilities remains unchanged, approximately 15 percent of the population will have a mobility disability in 20 years.

Ontario Building Code Accessibility Standards
This is not the first time I’ve talked about the OBC accessibility standards, and most of the time I haven’t been all that complementary. Standards appear to be made based on the dimensions of a manual wheelchair, and with the assumption that the person in the chair can bend their knees 90°, and that they have full upper body mobility. I might even go so far as to posit that they reflect the needs of someone who is a paraplegic, while not recognizing that a disability often affects more than the legs.

There has been some progress, especially in the latest version of the standards, published in 2015.

Accessible versus visitable
When I first saw that the 2015 OBC standards would require 15 percent of all units to be accessible, I nearly swooned with excitement and gratitude. Finally real progress that would meet the need of people with disabilities, and enable us to find housing, both within the social housing envelope, as well as condos and other apartment buildings!

Not so fast.

That new standard doesn’t mean that 15 percent of all units will be fully accessible. It means they will be visitable. How many will be fully accessible? I attended a forum on accessible and affordable housing last week, and a City of Toronto social housing staff shared that in city-developed social housing, 5 percent of units will be fully accessible.

Five percent.

Just for fun, take another look at the stats at the top of this post. Have some fun as your mind boggles.

Basic accessibility features
Contributing to this mess is the notion of “basic accessibility features.” Because those 15 percent of units that have to be visitable must includea barrier-free path of travel and doorway into a bedroom, full bathroom, kitchen and living room.” 

Now, as a person with a disability, I interpret basic accessibility features in say, the washroom, to be things like a raised toilet, a grab bar or two, a roll in shower, and knee clearance under the sink. Sounds reasonable, right?

Not per the OBC. Basic accessibility features is interpreted to be the barrier free path of travel in public areas of the building, as well as in 15 percent of units, and that in those 15 percent of units there be a raised toilet and reinforcement in the bathroom walls so you can mount grab bars. No actual grab bars, though.

That’s not tremendously helpful.

Because here is the rub: that barrier free path of access through the apartment will get a wheelchair user to the different rooms, but will they be able to use these rooms? Likely not, because as far as I’m aware, the basic accessibility features don’t mean that the rooms are larger than they usually are. Which means you can raise a toilet as much as you want, but without grab bars and space for the wheelchair to get into the room and for the disabled person to transfer to that raised toilet, there is not much you can do when you need to pee.


So these new standards enable people with disabilities who use mobility aids to get to the kitchen, I washroom, and a bedroom, admire how beautiful they are, but not actually be able to use them.

How is this visitable? Well, I guess in the strict sense of the word, it makes the unit visitable, in the sense that I can visit a friend —  assuming that my friend happens to live in one of the 15 percent of units that’s visitable — and have some faith in the ability to enter the unit. But I better have a high-capacity bladder, and not expect to stay overlong. Because I won’t actually be able to use any other room than the living room.

And another thing … That 15 percent doesn’t make sense to me. It may be based on the 15 percent of people who are projected to have mobility disabilities in 20 years, but that argument gets sidetracked once we talk about the units being “visitable.” Because although these units may be a way of future-proofing the building for the 15 percent of people who will live with mobility disabilities in 20 years, making them visitable acknowledges the fact that people have friends and family who have disabilities. Except that’s not limited to only 15 percent of the population.

Am I the only one who’s confused here?

The OBC has completely let down people with disabilities, as well as developers in this respect. It appears that when these standards were developed, the OBC did not consult with people with disabilities, who might have told him that we, too, are human and occasional need to void our bladders. Or maybe visiting someone with whom we’d like to use the bedroom. Or might wish to make ourselves a cup of tea.

The result is standards that on the surface are designed to make it possible for people with disabilities to be more integrated in society (read: visit friends, family, and lovers), but in actuality makes little to no difference, merely perpetuating barriers.

The standards, however, are just part of the problem. In Part II of this post, I’ll take a look at the development industry.

Tuesday, March 01, 2016

How Creativity Can Help You Cope

I was really excited when I was approached by Mango Health and they asked if I’d write some articles for them. Mango Health has created an app that helps you remember when to take your medication, and remind you of when renewals of your prescriptions are due (available in the US). Super helpful. They also have a blog with lots of informative articles about living with chronic illness. And that’s where I’m going to be appearing once a month through May. My first article is live now.

“I am obsessed with light and water. These elements may be a natural part of everyday life, but I find myself continuously fixated on them, particularly when taking photographs: I have approximately a gazillion photos on my hard drive, and 67.4 percent contain images of light, water, and often, light upon water.

Photography is my escape from stress and the chronic pain of rheumatoid arthritis and fibromyalgia. If the weather’s even halfway decent, I head outside, with my camera tucked into the corner of my wheelchair. Roaming my neighborhood and venturing further afield in Toronto, I disappear into the quest for capturing the beauty of this world.”

You can read the rest of this post on the Mango Health blog.