Tuesday, July 07, 2015

Why Me? Thoughts on Having a Chronic Illness

We’ve all asked the question at some point. Why me? Why did I get rheumatoid arthritis, juvenile arthritis, migraine, Crohn’s, psoriasis, etc.? It is an existential howl of despair into the darkness, asking that most fundamental of questions. Why did this happen to me?

Closely on the heels of that question follows the expanded version: what did I do? What didn’t I doesn’t it do? Is this some sort of punishment? Because as hard as that is, it’s the only thing that makes a certain sense in this new reality where nothing makes sense. 

Is it punishment?
When you are in extreme pain, when your chronic illness prevents you from doing what you need to do, when you feel like death warmed over — that has to be a punishment, doesn’t it? When something feels like torture — and the pain of many chronic illnesses often do — it has to be as a result of being guilty of something, being judged, sentenced, punished. Doesn’t it?

Only those who have done something very bad indeed are sentenced to a lifetime of misery. Is this the result of a vengeful god getting up on the wrong side of the bed or, for the less religious among us, maybe you didn’t exercise, quit smoking, eat right, or any one of the many things we are supposed to do, but so often don’t.

The domino effect is not over. Because once you start thinking that maybe this is a punishment, the self-loathing is inevitable. It may not be at the forefront of your consciousness, but it’s there. It’s so easy to say that you shouldn’t think that way, but how can you not? You did something bad for which you’re being punished with a chronic illness, ipso facto it’s your fault. You did this to yourself. So you proceed to beat yourself up for anything and everything, it becomes a habit, and you add your own punishment to the pile already dumped upon you.

It’s no wonder people with chronic illnesses have a higher rate of depression.

From the other side
But here’s an interesting question to add to the list: why not me? Which is not to say that you or I did something very bad for which we must be punished, but rather that this is the twin to the other, the why and why-not conjoined from conception. They are the yin and yang to one another, swirling together, expanding and contracting, always the two. 

Why not me? What makes me so special that I deserve to be spared this pain, this illness? With the underlying add-on of "someone else does not."

And this pokes right at that other thing I didn’t mention yet. The sense of unfairness that comes after the why. Because that’s the whole sentence, isn’t it — why did this happen to me? It’s not fair!

When I (metaphorically) stomped my foot and exclaimed that there was nothing fair about being a teenager with juvenile arthritis and in a wheelchair, my father would ask “whoever promised you life would be fair?” It never failed to bring me out of my mood, to joke back that I distinctly remembered a fairy godmother standing over my crib and doing just that. Promising me that life would be fair.

Truth be told, we all expect that to some extent, don’t we? Perhaps not consciously, but when something happens, something big and life altering, something not-good, it feels unfair. We try to be good people, try to live in such a way that we leave the world better than we found it. Does that not deserve the reward of fairness?

Except, contrary to the way we feel it should be, no one actually promised us life would be fair. Which gets back to the question of why not you?

Finding peace
After coming up on five decades of living with RA, I’ve gone through the gamut. I’ve asked all the questions and never received an answer. The why me doesn’t do me any good, but neither does the why not me. It took years, but I finally figured it out. Found the reason that this disease chose me.

Shit happens.

I apologize for the choice of word, but there really is no other way to say it. Sometimes, it just happens. Other than the science behind it, which is not comforting at all, there is no reason. It is not a punishment for your sins, or a consequence of not eating enough broccoli.

It just is.

And that is almost impossible to comprehend. So let’s not try. Let us just accept. Because in acceptance of its perfect now-ness, its purity, lies the answer. To leave the agonizing quest for a reason behind, to accept that sometimes — say it with me — shit happens, gives you the freedom to move forward.

Monday, June 29, 2015

Is It Discomfort or Is It Pain?

Discomfort. It’s a word often used in the medical world when referring to procedures or experiences that could involve pain. And it bugs me.

This latest rant began when I read an article about dental implants that referred to “post-surgery discomfort.” This discomfort was described as being akin to that which happens when you have an extraction. They give you Tylenol 3s for extractions — opioids. That’s not for discomfort. That’s to deal with pain and pretty high levels of it.

Using the word discomfort has a sense of avoidance in it. It may relate more to the discomfort the speaker has with the pain of others than the actual experience of the person in pain. Or is it dismissal? Does this exist in the same place as the everspreading use of the term catastrophizing to describe someone’s intense worry about their pain or illness and the impact it may have on their life?

I had an invigorating conversation on Twitter about the discomfort versus pain conundrum. Leslie said (with some degree of sarcasm) “it’s like they’re understating it in an attempt to calm us excitable, fragile creatures down a bit.” Several, including myself and Ross, felt that using discomfort when speaking of pain diminishes or devalues the person’s experience. On the other hand, Chronicallyfabblog didn’t give a rat’s arse what words were used, as long as she gets the care she needs.

There are times when the word discomfort is appropriate. Cathy mentioned sometimes being stiff, rather than in pain. And then Teresa brilliantly described a certain kind of Fibro pain: “some of my fibro "pain," which is more of a squishy sort of itchy, sort of zappy crawling kind of thing. If someone asked me if I was in pain, I would probably say no, despite the fact I want to pull my arm out of my shoulder socket.” I knew exactly what she meant and she is absolutely right. It is not pain, but you want to forcibly remove the body part experiencing that sensation.

So. Discomfort is a different experience than pain. But the medical professional using the word discomfort could have the goal of starting wide and gradually narrowing down the description of what the person in front of them is feeling. Ann, who’s a nurse, mentioned not using the word pain when talking to patients, because people, including herself, suck at rating their pain. Instead, she explores, getting a more detailed description of the sensation. And that exploration is key, because if the person is in pain, it will lead you there. 

Dictionary definitions:
Discomfortan absence of comfort or ease; uneasiness, hardship, or mild pain.
Painphysical suffering or distress, as due to injury, illness, etc.

Assuming that what we are talking about is indeed pain, then I believe using the word discomfort serves to minimize the sensation and the experience. Language has power. The words we choose to describe something frames the experience. A medical professional who consistently using the word discomfort reframes the experience to something uneasy, uncomfortable, or, as described in the dictionary, mild pain. In using this description, it’s easy to eventually come to believe that what one’s patients experience is in reality a milder sensation than what they describe.

And it’s a short leap from seeing your patients’ description of their discomfort as somewhat exaggerated to perhaps believing them to have a pathological relationship with their pain. That they are catastrophizing.

Another point raised in the Twitter debate was your own role in such a situation. The patient’s responsibility to push back, to correct inappropriate word choice. Or as Chronicallyfabblog said, “if you’re not being heard, it’s because you’re not screaming loud enough.” And there is some truth in that.

But I don’t believe that you should have to scream in order to get to a situation where your doctor/nurse/physiotherapist/etc. listens to you and uses words that are appropriate to your experience. Not everyone is comfortable advocating for themselves. In fact, becoming a self-advocate is often a by-product of living with a chronic illness – in other words, people didn’t have those skills before.

Like it or not, the doctor-patient relationship has an inherent power dynamic. We believe that the doctor is the authority (at least initially). It is therefore the responsibility of the medical profession to pay attention to the language they use and how that frames the discussion. Because that discussion will often shape the interaction, the relationship, which in the end can shape the patient’s assessment of their experience. If someone came to an appointment needing help with pain, and through the doctor using minimizing language, left in discomfort and without a prescription, then that physician has failed in their responsibility to provide care.

Several well-known studies have established that when someone has a realistic expectation of post-surgery pain, they actually cope better and will rate their pain lower than someone who hasn’t received information about what to expect. In fact, someone who knows what to expect actually has a better outcome than someone who doesn’t.

Minimizing an experience of pain and avoiding an honest discussion of the intensity that such pain can have only serves to leave someone alone in a difficult situation. It doesn’t actually help at all. Perhaps if the medical field stopped pussyfooting around the reality of pain, they might help their patients ultimately cope better with their illness and their pain.

Friday, June 26, 2015

#TOtheWaterfront: Opening the Blue Edge

Last Friday, I was at the official opening of the revitalized Queen’s Quay. But I get ahead of myself.

Look for the guy in the green t-shirt, they said...
Four years ago, I posted about accessibility barriers in the path to the beach. Subsequently my MPP, Glen Murray, a true champion of universal design, facilitated a tour of SugarBeach with staff from Waterfront Toronto. It was a great day, with lots of opportunity to talk about accessibility, barriers, and solutions. At the end, they committed to involving people with disabilities in the consultation process as they began the revitalization of Toronto’s waterfront.

Joe Oliver, Minister of Finance delivers his speech 
Six months later, I got a call. Would I be willing to serve on the Construction Liaison Committee (CLC) of the project? Being asked to put my money where my mouth was, of course I said yes.

It’s been an amazing 3 and a half years. The monthly meetings of the CLC has taken us from the planning stage of a huge and complicated revitalization of Queens Quay (the street that runs along the waterfront), to the completion of this fantastic project. Seeing it all behind the scenes has given me and the other community stakeholders on the committee a thorough understanding of what goes into construction. Waterfront Toronto committed from the start to excellence and throughout the last four years, they’ve lived that commitment. This wasn’t about the lowest bidder and cutting corners. This was about quality materials and quality workmanship coming together to build something beautiful, usable, and long-lasting. (see before and after photos)

This stretch of Queens Quay is now, in the parlance of urban planners, a “complete street.” That means it has room for everyone. There is a wide promenade for pedestrians, and a bike trail, separated from the street, keeping bicyclists safe. That is a dedicated lane for public transit (in this case, streetcars), and a road for cars.

The Promenade is one of my favourite parts of the revitalization. It’s made of Canadian granite. 2.4 million pieces of it.

The last of the granite was laid the day before the opening. I’ve watched workers putting these down, on their knees, and carefully following the pattern of maple leaves that now decorates over 2 km of Queens Quay. Imagining this being done 2.4 million times is a little overwhelming. More than worth it, though, as its built for the future, the granite estimated to last a hundred years.

And that’s just one part of the project. There's lots more. I learned about dewatering, an essential process in construction on the waterfront, and the careful thought that went into selecting the trees for the Promenade, including much about Silva cells. There was collaboration between Waterfront Toronto’s construction, coordinated in an elaborate dance with upgrading from Hydro and TTC. They worked through two of the coldest winters we’ve seen in decades, and still delivered on time.

And it’s not just about the street, but innovative public spaces, as well. My beloved Sugar Beach is part of the revitalization project. So is it HTO Park (here seen earlier this year)

and beautiful wave decks, the most created of which is Simcoe Wave Deck, built for play (also from several months ago).

Throughout the process, everyone involved listened carefully to the community through public meetings, and the CLC, composed of representatives from local businesses, local residents, and me, chiming in about accessibility.

Friday’s opening included speeches by elected representatives from all three levels of government which had each contributed funding to the project, as well as from the local BIA and residents. This all happened at the Simcoe Wave Deck. An area in front of the dais was roped off for people who use wheelchairs and scooters so they wouldn't get buried in the crowd.

Let's talk about the ribbon. Over 600 m long (longer than the CN tower is tall), the blue ribbon was held by volunteers all along Queens Quay. It was unzipped rather than cut, and pieces are going to be used by artists and kids programs, celebrating the new Blue Edge.

And then there was a party at HTO Park which continued right into the Redpath Waterfront Festival. It was a very good day.

I’m very proud of being part of the waterfront revitalization process and proud of Waterfront Toronto. It staffed by people who are passionate about their work, and who work hard to create something unique and iconic for Toronto.

Come check it out. Go #TOtheWaterfront.