Showing posts from April, 2013

Freaks, Redux

Back in the day, people were so squicked out by disability that governments felt compelled to make ordinances preventing citizens who had disabilities from being in public places. They were called "ugly laws," not referring to the laws themselves, but to the state of appearance which they were intended to curtail: " No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense." - Chicago Municipal Code , sec. 36034, repealed 1974   I've written about the freak label before and at that time, it was in connection to a story about how a BBC children's show host with a disability prompted a number of formal complaints from the public. Today's post is

Real RA: The Benefit of RA Hands

Photo by David Govoni Sometimes, RA doesn’t just take. Sometimes, RA gives. When I still lived with my parents, I was in charge of pies. I'd found the perfect recipe for the crust and loved experimenting with different fillings. Our kitchen wasn't very wheelchair accessible, so my mother would place the ingredients and tools on the dining room table and I'd get to work. I love the feel of flour between my fingers — the cool softness of it, the way it packs into smooth shapes that fall apart with the slightest touch. After adding slices of butter, I'd mix it into the flour with a pastry cutter until it was a pile of pea-sized pellets and then get my hands in the bowl to smush them together into a ball of dough. You know the rest: rolling the dough into a large circle, carefully adding it to the pie pan, fluting the edges and adding the filling. Shortly thereafter, the delicious smell of baking pie would waft through the house. I grew up in a baking househ

Seating Arrangements

Last Friday, I went to a Toronto concert hall to hear David Sedaris read from his new book Let's Explore Diabetes with Owls — a book that apparently has nothing to do with diabetes, although owls do make a rather hilarious appearance . I had no idea what to expect. In fact, on some level I confused David Sedaris with Dan Savage – they are funny gay men who write and have the same initials. Natural mistake. A-hem. I have a couple of books written by the former, but haven't read them yet. That's going to change very soon. David Sedaris is my new favorite writer. When he read the essay linked to above, I discovered that in one respect, I'm very much like this very funny man. Because I spent a significant part of the past week trying to find out how to contact him so I can ask how much the pygmy cost. It's wrong, I know it is, but I still need to know. How is David Sedaris not on Twitter? Anyway! This post is not about that. This post is about something else en

Functional MRIs: Making Pain Visible

This week on HealthCentral, I wrote about some very interesting studies of what happens in the brain when you're in pain: "Have you ever felt that your doctor underestimated your pain? Have you ever felt that others didn't believe you have pain? Have you ever wished you could prove that you're in pain? An exciting new development has wide-ranging implications for the assessment and treatment of pain. Studies of Pain Using fMRI Researchers are using functional magnetic resonance imaging (fMRI) to study what happens in the brain when people experience pain. Functional MRIs provide a sort of 3-D movie of the brain as it response to pain." You can read the rest here        

Wishing Peace for Boston


A Virtual Visit and an E-Book Giveaway

When Marianna and I talked about me stopping by her blog A Rheumful of Tips , she suggested doing something a bit different. We batted some ideas back and forth and settled on a video. Of me.  There's a reason I'm a photographer, not a model. Well, aside from not having the ability to subsist on lettuce leaves and water. I'm not comfortable in front of the camera, but thanks to Marianna, I got to challenge myself and learn lots in the process. Hop on over to A Rheumful of Tips to watch the results . Also: enter to win a copy of Your Life with Rheumatoid Arthritis in the giveaway!   

On Living Well with a Chronic Illness

I am beyond thrilled to tell you that I've joined CreakyJoints as a regular blogger. They're a terrific organization and do important work for the inflammatory arthritis community - I've been a faithful reader of their posts for years and am pretty chuffed to be part of the group now. My first post for them is about the origin of my perspective on living well with chronic illness. More specifically, two moments from my past that have shaped who I am and how I think about living with RA. The sources of inspiration: my parents and a psychic: "I had a great time writing a guest post for CreakyJoints a couple of weeks ago and was thrilled when they asked if I wanted to become part of the team. After years of reading the great posts published on the site, of course I wanted to be part of the team! My little corner will be called Lene ’s Seated View. Like the title suggests, my thoughts on living well with a chronic illness will occasionally be of a slightly philosophic

Easter Tinks

Things went a little nutty last week and the blog suffered. Again. Sorry, blog. Better late than never? Last weekend, the Tinks came to visit and we all went out for lunch to celebrate the long weekend and two birthday goddesses: my mother and my sister. First, as is traditional, The Boy was covered in Tinks in 1.2 nanoseconds. We thought this more appropriate for Palm Sunday, actually Muffin was shocked Morgan's getting a lot of joy out of her camera while Liam had an intense discussion with my sister about life, the universe and everything Then off we went to a local pub for lunch. You can tell Spring is here by the patio preparations. Which naturally meant a petting zoo for children (here impersonating chickens) At lunch, Liam and Scott got into a staring contest.  Photo by Janne/TinkMama   While I was fascinated by the biggest French fry I've ever seen Liam and Morgan "borrowed" Scott's phone to play Angry

Help Me Make a Paperback

You may have noticed I've been a bit scattershot in my approach to posting lately, but I have a good reason. Several good reasons. There's been a rather a lot of work, a lot of book promotion and just recently we dove into making the paperback. This means reading the damn book again. Not that I don't like my book — I am quite proud of my baby and when caught unawares will admit to thinking it's pretty good. The reason I am saying bad words in connection to the book is that I have read the damn thing (oops, there it was again) at least nine times since November and thought I wouldn't have to do it again until putting together the second edition a couple of years from now. Nope. I wanted a paperback. Which is a good idea, because a lot of people have told me they want a "book book," something they can hold in their hands, lend to their friends and family and so on. And to be honest, I want a book book, as well. I'm thrilled to see Your Life with Rheu