Grieving

As part of Nablopomo (national blog posting month), I’m determined to publish some of the posts that I’ve drafted over the past year or so but haven’t published due to my Obsessive Compulsive Editing Disorder. Here’s one that I disregarded as too indulgent. In retrospect, though, I think it illustrates a point in time, and the grief that comes with adjusting to a new level of ability. 

I get lots of advice about how to manage the emotional impact of losing my able body. I see a psychologist  most weeks. She encourages me to be mindful and focus on the present moment and present task, rather than worrying about the future and the challenges it holds. Writers Sanda Turner and Elizabeth Tova Bailey, both of whom live with debilitating and life-threatening illnesses, have a similar approach. They illustrate the importance of doggedly noticing the small wonders of everyday life (like watching a snail eat). I get daily updates from an FSH Yahoo group forum, whose members’ remind me to ‘count the haves, not the have-nots’, and other such american one-liners.

I work pretty hard at following this advice. I try and keep my thoughts to today. When I call my OT today, I will attempt to focus on the matter of my next appointment, and not worry about whether I’ll ever find a wheelchair that can support my body comfortably.  I will notice the sunlight landing on my sweatshirt and the cabbage trees outside and the taste of my morning coffee. I will be thankful for the abilities I haven’t lost and for the people who continue to prop me up physically, financially and emotionally.

These stakes I dig into the sand aren’t always strong enough to withstand the waves of grief that roll in. They often arrive without notice, in the middle of a conversation or a mundane task. A stray comment from a friend about the lengths she’s swimming each day reminds me of my own exercise routine. My sternum contracts as I remember the flying feeling of pulling through the water and the elated exhaustion of pushing my body to reach the end of another length. It’s a throw-away remark, hardly noted as the conversation flows over and around and on, but it hits me like a log and I am stunned. Swimming lengths at the pool. As if it were the most normal thing in the world. And it is – it was – but it’s not – and it won’t be – and it’s gone now.

But back to today.

Mental bandwidth

The New York Times recently published an article called The Mental Strain of Making Do with Less, about a study indicating that dieting can take a toll on your IQ. The deficit isn’t because you are depriving your brain of precious fatty and sugary fuel, but because dieting requires a lot of thinking.

The article describes the phenomenon as “bandwidth scarcity”. While dieting, you’re constantly thinking about what you will or won’t eat, calculating the Weight Watchers points in a Daniels kebab, or feeling guilty about the triple chocolate cookietime you had yesterday. Thus you will have fewer neuro-resources to commit to your pre-lunch meeting – or, in the case of this study, an IQ test.

It doesn’t just stop at dieting. The researchers believe that bandwidth scarcity applies to all sorts of situations:

Just as the cookie tugs at the dieter, a looming deadline preoccupies a busy person, and the prospect of a painful rent payment shatters the peace of the poor. Just as dieters constantly track food, the hyper-busy track each minute and the poor track each dollar.

It occurred to me as I read this article that the theory could easily apply to people living with chronic pain. If mental bandwidth is a pie to be shared out among the mental functions, pain management is a greedy-guts. First, there is planning how to pace yourself during the day so as to cause as little pain as possible. Then there’s deciding on which medication to take and when. Both of those require a rolling cost benifit analysis. Then there are the mindfulness techniques which help to diffuse panic responses to pain and make it more bearable. All the while listening to the wee voice in the background going “ow ow ow ow fuck ow”.

Over the past six months or so, I have been trying to increase the amount of time I spend “working” each day. The idea is that if I can prove to myself that I can work, say, ten hours a week, consistently, then I can start thinking about committing to paid employment. What I didn’t count on is the difficulty of concentrating on a task with pain running in the background. Our bodies are programmed to react to pain and it takes a lot of mental bandwidth to ignore it. It also takes some thinking to determine whether the pain is at a point where I should take action (change positions, take a break, pop a pill) or if I can carry on as is for a few more minutes.

It has become easier, as I experiment and get to know what I typically can and can’t cope with. I know now that I can manage about twenty-five minutes at the computer, though it changes day to day how many of these sessions I can do. The more I practice mindfulness, too, the easier it is let the pain carry on in the background and focus on the task at hand. I also know more now about how to use pain relief and positioning effectively. Still, these techniques all require thought, and the pain itself is always going to chew up some bandwidth.

I think I’d better stop feeling guilty about eating cookietimes.

In praise of mobility parking

 This is my mobility parking permit.

IMG_20131104_194325.jpg

It’s plastic, really hard to lose, lasts for five years and cost fifty dollars. Bargain, eh? It was one of the easier things to put in place to assist me with mobility. All it took was a letter from the doctor and an application form to CCS, and it arrived in the post a week later. The permit allows me to use about fifty mobility parks around the city. Mostly this feels like plenty, though at certain times and in certain locations, it feels like there aren’t nearly enough.

Wellington City Council gives orange tag holders an hour of free parking, plus a little extra time on top of the stated limits. This means it’s not extortion every time I need to park for an hour or two in the city. I’ve also found that the parking wardens are pretty generous with me, and I think this is because of the permit. Except that time I parked in a bus stop by mistake and got towed. Oops.

I often see people without a permit in mobility parks, and it really cheeses me off. It makes a huge difference to be able to park close to where I’m going. If I’m really sore, one or two hundred metres extra walking is the difference between going to the pool or going home. Or, more commonly, it means using up two extra spoons I had reserved for finishing a blog post later. There often is another park, but I don’t think people really understand the difference that distance makes. They certainly don’t consider it when they’re parking in a mobility spot “just for a few minutes”.

My current bug-bear, though, is Countdown in Newtown, the one with all those delightful pictures of shiny white shoppers on the outside. Their mobility parks start moderately close to the entrance to the escalator, though nowhere near the lifts that most disabled people would have to use. They then proceed to get further and further away from the door, until the last spots reserved are in the back row of parking. I’ve raised this with their management three times now; they blame it on the building owner. I’m thinking of implementing some kind of embarrassing Facebook campaign.

I shouldn’t grumble too much, though. Most of the time, mobility parking is brilliant, and allows me to do things that I wouldn’t otherwise be able to do. Like today, when I could park right outside the swimming pool in Kilbirnie (kill Bernie), and just around the corner from my meeting on Featherston Street. Ergo, this blog post was brought to you by Wellington City Council, CCS, and everyone who didn’t park in the mobility spot on Grey Street. Thanks guys.

PS.I am a bit better at parking now. But only a little bit.

The Spoon Theory

The Spoon Theory, written by Christine Miserandino on her blog “But You Don’t Look Sick” is quite popular with the disability crowd. It’s essentially a story about living with lupus, and how she starts each day with a handful of spoons. Each time she does something taxing, she loses a spoon, and eventually they are all gone.

Some people don’t like the spoon theory at all, like this guy. I have my doubts, too. I probably would’ve chosen a different metaphor, because who starts or ends their day holding a bunch of spoons? Or any other cutlery, for that matter? I also don’t believe that so-called “healthy” people have an infinite amount of spoons. We’re all counting something: hours, dollars, patience… But the thing I like least is the sickening purple design. Ugh.

Despite my reservations, I think the story is a useful illustration of the limitations of fatigue and pain. I identify with it a lot, though my spoons are different from Miserandino’s. Mostly I don’t have much trouble getting up and dressed (other than choosing which dress to wear), but sometimes breakfast costs a spoon. Driving always burns through spoons. Computing is very spoon-intensive. Sometimes I’ll use up three spoons just having coffee, because the cafe chairs are crap and there aren’t any walls to lean against.

I often feel like it hard to describe all these things. So I’m pro-spoon. But not like this guy.

Back-seat cooking

I realised recently that I’m doing a lot more cooking than I was a year ago. It must have increased gradually, because at one point I was finding it too hard to prepare a few vegetables for our tea.  It was incredibly frustrating, not only because I love it, but also because it’s one of the things I’ve always been able to contribute to my parents’ home. They have, after all, allowed me to colonise the nicest guest-room in the Greater Wellington Region, and hardly ever complain when I leave scraps of paper all over the house. My mum also knows how to stock a good pantry, and not being able to cook from it just seemed downright wasteful. 

I’m oh-so-grateful to be able to cook something most days now. I attribute this to: a) an aqua-exercise routine that keeps me fitter b) a better understanding of (and patience for) pacing myself c) coping better with pain, and d) the beautiful shiny grunty noisy food processor Emmie bought me for my birthday last year. Most things I cook these days involve plenty of loud pulsing and grinding, particularly since I’ve been experimenting with eliminating “inflammatory” foods (gluten, dairy, sugar, soy…). The jury is still out on whether it makes a different to my pain levels, but the resulting foods have been highly delicious.

I still have to be careful to cook in small doses, but most of the time there are natural breaks in recipes. I should write a cook-book for fatigue sufferers: “Combine dry ingredients. Lie down and watch one episode of 30 Rock. In a separate bowl, beat eggs together with milk and oil…”. 

My favourite, though, is back-seat cooking. At Days Bay, if I’m not feeling up to cooking dinner, I can ask Rick to lend some muscle to the meal. He’s not at all a chef (though he whips up beautiful cut-fruit arrangements), so he doesn’t mind if I tell him what to do and exactly how to do it. Emmie, on the other hand, is a great chef. Luckily, she’s not phased if I sit in the kitchen and issue instructions from my head or my browser. We’ve had some great cooking marathons that way. I get to do the easy bits, like picking thyme leaves off their stalks. And tasting. Lots of tasting. 

Here are some of our recent favourites. You should try them. 

bread4

http://www.mynewroots.org/site/2013/02/the-life-changing-loaf-of-bread/

http://www.mynewroots.org/site/2011/04/the-raw-brownie-2/

http://www.mynewroots.org/site/2012/05/happy-crackers-2/

http://www.petite-kitchen.com/2013/01/salted-peanut-butter-cookies.html

celery pesto recipe

http://shesimmers.com/2010/04/celery-almond-pesto.html

http://kitchen-tested.com/2013/04/18/chickpea-tofu/

Dragon

Hi how are you? It’s been a while.

I’ve been spending the last few months getting to know Dragon. Dragon and I were introduced by an excellent OT called Fran Smith. My equally excellent GP recommended Fran when I decided it wasn’t worth waiting for the DHB to deliver something useful (more grumbling on that note later).

Fran specialises in back-to-work assistance, and is very much focused on what her clients can do. So, for example, I can sit upright or partially reclined, in a comfortable chair, for a certain amount of time. Based on that, we have developed a “work” set up using my couch and various cushions. She also put me in touch with a clever optometrist from Tawa, who has designed an ungainly but effective device to hold a laptop or monitor in any position. It took us a while to figure out that typing was a no-go. Even with specialised keyboards, it seemed that it was too much to ask of my shoulders. Here’s where Dragon comes in.

Dragon is a piece of software which enables its user to input text through a microphone headset and look just like Christina Aguilera. It’s very clever. And very, very frustrating. When I first started using it, I felt like I was trying to use a computer in a different language. No matter how well I enunciated (N Nuncio Ted), every word seemed to play Chinese Whispers before it got to the page. My cursor seemed like a little kid trying to piss off its parents, doing the exact opposite of what I had requested. All the windows seemed haunted, popping up and disappearing at will. I wasn’t sure it was worth pursuing this relationship.

Six months later, Dragon and I are getting on all right. Mostly. We’ve come to a compromise: I use a mouse for pointing and clicking, and speak the rest. Dragon understands me a lot better now, and I’m learning to tolerate its stubborn nature. There are definitely times when it’s just easier to click out each letter with the on-screen keyboard. You gotta know how to pick your battles.

I hate it sometimes, but with Dragon I can finally see myself working again. I can actually imagine myself in an office, talking in monotone, repeating myself, spelling out words, annoying my colleagues. Contributing. Engaging. Being paid. For that, I’m willing to build all kinds of bridges.

In hope of (more) wheels

I got my restricted licence last week. Thank god.

Of course, I should have got my licence a long time ago. Like, in 2001. This past year I’ve been cursing my teenaged self for refusing to learn to drive. I’ve also been cursing NZTA for making the restricted licence test harder just when I wanted to pass it so very much. When I tried sitting it in November last year, I was directed back to the testing centre within the first five minutes (do not pass go, do not collect $200). This time, though, after a grueling, hour-long tour of every round-about in Lower Hutt, I passed! Imagine my bliss.

Having my licence makes a huge difference. See, I live in the second-to-top house on a hill that’s too big for me to walk up or down. Until recently, every time I wanted to go anywhere, I needed a driver, be it parental or taxi. I’m lucky that my step-dad works from home, and very generously ferries me to the bus-stop, or further, without complaint. Lucky, too, that he’s an excellent teacher with the patience of a saint.

Driving a manual is pretty hard on the muscles, so I can still only drive so far before I get sore. Hopefully I’ll be able to get a lotteries grant to help me to buy an automatic with lightened steering and an equipment hoist. Then I’ll be unstoppable. For now, though, Mama and Emmie are both generously lending me their vehicles, and I’ve got a new wee walker that I can get in and out of the car by myself. It’s a whole new world.

I still dearly miss the old world, the one where I could walk the length Cuba Street and ride my bike down to the sea. But this new one shines with glimpses of the independence I used to have. And I like it very much.

P.S. I am still very bad at parking.

Have you consid…

Have you considered referring to FSHD as Fish Dystrophy?

– Heather Zachernuk

Cripples are hipsters too

Last January, in my disability infancy, I had a conundrum. I really really wanted to go to Camp A Low Hum, but knew that my back and shoulders would be very much opposed to the idea. Thinking of possible solutions, I emailed Blink to see what he thought about using a wheelchair at Camp Wainui. He said it wasn’t going to work;  the terrain is rough and uneven, and the stages are all over the place. Some of them wouldn’t be accessible at all. Basically, the site wasn’t set up for people with disabilities.

I decided I’d go anyway. I knew I wouldn’t be able to do everything, but figured it would still be worth going, even just to catch up with lots of  brilliant people in one very pretty location. The people and place were, indeed, pretty and brilliant, but to be honest, it wasn’t really fun. I had a lot of trouble getting to get to and from the tents, I couldn’t access lots of the stages and I had big FOMO. My muscles hurt, and I ended up self-medicating more than I’d intended just so I could join in, then feeling yucky about that, too. As I was waiting for my ride outta there, I reminded myself not to come back next year, as much as I knew I’d be tempted.

A few weeks ago my sister noticed that WOMAD were offering some free tickets for carers of people with disabilities, so I did some investigation. It turns out that TAFT, who run WOMAD, have gone to a lot of effort to make the festival accessible for people with disabilities. Not only do I get a free ticket for Emmie to come as my carer, but we’ll have a parking space right next to a special campground, shuttles running between the stages & campground every half hour, mobility scooters for loan, and special viewing platforms at three of the big stages. They’re also providing sign-language interpreters to make things better for deaf and hearing-impaired attendees. I’m so impressed.  And it’s got me thinking about responsiveness.

At some point, someone in the WOMAD picture has obviously said, “Hey, I bet there are lots of disabled people who would love this, how can we make it possible and worthwhile for them?”. I reckon that is the crux of responsiveness. Everything else, the parking, the ramps, the interpreters, they’re all important too, but not as important as asking that initial question. Now, Camp a Low Hum is on a totally different scale to WOMAD, and has a much less accessible site. It would be impossible for Blink to offer the kind of disability services WOMAD does. But it would be easy for him to ask the question, and just asking it might make all the difference for someone. Because cripples are hipsters too.

The incredible lightness of reading

I’ve just finished my first e-book, and I’m never reading an actual-book, ever again¹. Jonathon Franzen’s The Corrections is five-hundred-and-something pages long. It would have been beyond me if I hadn’t been gifted – care of my mother’s Westpac Hotpoints – an e-reader for my birthday this year.

What a joy it is to be able to read for a decent amount of time again. I’ve got so many horizontal hours at my disposal these days, but tv-on-the-internet has dominated my resting time, because it’s hard to find an angle that suits my neck, arms and shoulders. Now, though, I can read in all kinds of different positions. I can even read on the bus, because I can casually throw my book in a bag, knowing that its weight won’t break the muscle-bank when I transfer my things to and from my walker.

My second light reading revelation comes care of my sister Kath and her partner Andrew. They kindly bought me a six-month subscription to The Listener, a publication that meets the ‘light’ criteria in more ways than one. People scoff a bit at The Listener, and to be fair, it  has its flaws. The ‘feature’ articles usually read more like padded lists of quotes, the editorials are a bit right-wing, and there’s scarcely a page not graced by a getty-image. Despite its shortfalls, though, The Listener is a nice collection of interesting tid-bits written by (mostly) good columnists. It’s possibly worth the $4.30 for Diana Witchell and Jane Clifton alone. I really look forward to the arrival of my new issue every Monday, and not just because it’s light enough to prop up on the arm of the couch while I eat breakfast.

In the interest of maintaining an optimistic outlook, I’m going to try and write a ‘glad’ post for every ‘sad’ post.² And I’m definitely glad for gifts like e-books and The Listener. Sometimes little things are big things.

¹Please don’t hold me to this.
²Or this.