Creativity and disability

Birds by vladstudio.com

I’ve been a fairly creative person most of my life. Topping the list of creative enterprises is my lifelong love of music, primarily singing. It’s the one I always return to if I stray. Songwriting and guitar were natural progressions for the type of music I sang. And I’ve always loved to write.

Over the last decade I’ve taken on some new creative challenges, including photography (samples), collage (sample), piano, song arrangement, writing blogs, and teaching music (web site).

I’ve been thinking quite a bit about how being disabled and having chronic pain have affected my creativity – and vice-versa. There are the obvious physical effects – I’m limited as to where I can go to take photos; I don’t have the stamina to perform music as often as I once did; getting myself to choir is becoming more difficult to manage; and even with a raised garden box, I find gardening challenging and not as enjoyable as I once did. But there are some positive effects as well.

My most recent creative undertaking has taken me by surprise: I’ve begun baking. For some reason, this month I binge-watched The Great British Bakeoff: five seasons of very fancy baking – tarts, pastry, breads, puddings, biscuits (known in the US as cookies). Baking is not something I’ve ever spent much time doing, except my annual challah (braided egg bread) around the winter holidays and the very occasional batch of cookies. I was so inspired by the beautiful creations on the show, and it looked so satisfying to mix some ingredients together and, like magic, pull a savory pie or gorgeous dessert out of the oven or freezer. I love the science, the chemistry, and the artistry of it.

To get baking, my first task was to set up the kitchen in the cottage (studio) to make everything accessible. It’s a small space and I need to sit on a tall stool for most of my work. Almost everything is within reach now – bowls, pans, flour and sugar, utensils, appliances. It has also required purchasing quite a few toys tools. I’ve never before drooled over kitchen catalogs or cookbooks (aka baking porn). 

My first endeavors were mostly successful: fantastic focaccia, perfect pistachio shortbread, and a special order of vegan cinnamon rolls for Laurie. My cheesecake was a disappointment to me, though it got rave reviews from friends.

I have to wonder: is all this dabbling in different creative outlets a form of distraction for me? I don’t think about pain when I’m singing or arranging a song or kneading bread dough. I’m content doing something that’s fun and productive, and my mind is occupied with the task at hand and not stressing about my burning legs. A couple of times I’ve taken on a bit too much with a baking project and I get tired and sore, but I think that will get better as I get more organized and familiar with techniques and learn to pace myself.

Pure distraction for me is more about activities that don’t result in a satisfying product – things like watching TV, spending hours on Facebook, or playing games and doing puzzles on the iPad. I can get absorbed and sometimes forget about pain, but I don’t feel as satisfied at the end – sometimes, just the opposite: I feel like I’ve wasted time.

At a point in my life when I could – and sometimes do – feel rather useless, it’s good for me to dive into a project that feels purposeful, that results in something others might enjoy and that makes me feel competent and good about myself. Singing does that; taking beautiful and/or creative photos does that; and now baking something with care and love does that (though I need to search out vegan recipes for Laurie!). I’ve signed up for a 2-hour cooking workshop next weekend: 4 Desserts Every Cook Should Know (e.g. dark chocolate mousse!); we’ll see what comes of that, besides expanding waistlines.

Uh-oh, I just discovered three seasons of The Great Irish Bakeoff online. But this is research, not mindless watching! Right??

Pistachio shortbread

Coming Out....

It’s taken me a long time to decide to write about this. It’s not technically a part of my disability, but it is directly related to it. It’s also something I’ve thought of as quite private, but also that it might help other people to understand or to cope.

The radiation, which has caused the nerve damage to my feet and legs, hasn't just affected my lower limbs. Think about the organs that are in your pelvic region. Can you guess where this is going? Stop now if you’re squeamish.

When I had the original rectal cancer surgery in 2002, the surgeon thought he was doing me a favor by creating what’s called a J-pouch – essentially an internal rectum-like reservoir fashioned from the large intestine and designed to avoid a colostomy. I had a temporary ileostomy for a couple of months while everything healed up; it was pure hell and I couldn’t wait to get rid of it. Then it was reversed so I could, supposedly, poop like I was originally intended to. And along came chemo, which probably did a lot of damage to my intestinal tract (ironic, isn’t it?). And, of course, the radiation, unbeknownst to me, was in there happily doing its thing to the cells and nerves in my pelvis.

Image from Someecards

The J-pouch was never good – sometimes, it was OK, but usually I had very little control over my bowels; often I would go 15-20 times a day, and usually with very sudden onset. I tried so many things – complete change of diet, acupuncture, herbs, colonics, and on and on. Then after a few years it shifted – in hindsight (so to speak), I now know it was the radiation doing its slow dance. Sometimes poop would come spontaneously (shit happens!) and sometimes I would spend hours trying to evacuate it. I got a lot of reading done sitting on toilets. It pretty much took over my life. If I wasn’t pooping -- or trying to – I was thinking or worried about pooping. A pretty shitty way to live.

After putting up with this for several years, I finally decided there are worse things than having a colostomy (which is easier to manage than an ileostomy). I talked with my surgeon, my therapist, with Laurie and with friends who had been through all this with me; I conferred with other colostomates at great length, and finally made an appointment for the surgery in August of 2009.

Even though having a colostomy is not without its problems, it is light years better than what I was dealing with before. Once the initial adjustments were made – the correct fit, the right system (there are tons of options) – I’ve been almost able to forget about it. Oh, I worry about leaks and odors and the noises it often makes, or about the balloon that poofs out on my belly when it’s full of gas; sometimes the skin around it gets irritated. I can live with all that – I’m not tied to the toilet or afraid to go somewhere lest I have an accident. (Back in “the day” I could tell you where every public toilet was in the tri-county area.)

There is a lot of support out there for people with ostomies. I joined an online group shortly before surgery and got a ton of useful information, made some friends, and even managed to share some amazing humor. After I was a seasoned veteran, it was always heartwarming to be able to help someone who was new to the world of ostomy– you could almost feel the relief when they realized they weren’t alone and could get some peer support and straightforward answers. That forum has disbanded, but writing this has made me want to see if I can contact some of those folks. 

Image from Someecards

My favorite part of the online group was our sometimes wild humor. A couple of us came up with the Ostomy Dictionary, a bunch of terms in the style of Ambrose Bierce. It is still online in several places. This was one of my contributions:

Leg warmer, noun: a pouch, recently filled with “product,” (i.e.   poop) resting against a bag peep’s thigh. Has the temporary effect of a hot water bottle.  Desirable in winter in cold climates.

More definitions here.  Be forewarned: it's explicit.

And what else resides in that pelvic neighborhood? Well, for one there’s the bladder. Sigh. I’ll save that for another post. Let’s just say, I hope I won’t have to become a double-bagger (n: Bag peeps with more than one ostomy to manage.) 

It's a small, small world

Occasionally I run across one of my old daily calendars with events and appointments jotted down; or an address book from a decade ago. I'm astounded by how many activities I participated in and how many people I was regularly in contact with.

Since becoming disabled, my world has shrunk considerably. No longer do I have the energy to go out several evenings a week to hear music (or perform it), see a movie, visit with friends, go to a party or out for a meal. Most of my communication with friends takes place via email or Facebook - even a phone call seems daunting at times.

Truth be told, I've always been an introvert and a homebody - I love my alone time, and crowds can make me uncomfortable. But the physical limitations and fatigue factor have compounded this. Sometimes even thinking about going out where I know there will be a crowd is exhausting. Some of it has to do with access, especially if there are unknown factors -- will there be stairs? is the bathroom accessible? -- and some of it depends on my level of pain and/or fatigue in the moment.

I would love to be one of those inspiring disabled people who barrel through life no matter what - showing up at parties and dances, fearlessly braving the obstacles, their calendars full of activities. Right now, my calendar for the next two months shows my weekly choir rehearsals, semi-monthly ensemble rehearsals, my weekly workout session, a therapy appointment, and one outing with friends. It is enough.

What makes me saddest about this dearth of activity is the lack of dates Laurie and I have. We used to go out often for meals, to lectures, movies, and concerts, for walks. Nowadays it's takeout and a streaming movie for date nights. Laurie often goes out with friends now instead of with me. I'm glad she feels free to do that - it isn't fair that we both be restricted by my inability to have a larger life.

This post is mostly for my own observation. I'm not feeling sorry for myself -- my life is quite rich with what I am able to do, and in spite of pain and disability, I'm a happy person. I think a certain amount of social shrinkage is normal as we age; but it has taken me a bit by surprise, especially when I see it in black and white on old calendars.

And I really hope I have not planted an ear worm of It's a Small World in your head.