PFAM: Why Do We Write?

Welcome to a whopping big edition of the Patients for a Moment (PFAM) blog carnival! I'm blown away by the response to the topic I proposed: "This is why I write."

In fact, I received so many responses to my call for contributions that I barely had time to write my own post, which could pretty much be the topic of my post: How much I don't write! Instead, in my post (which I just slammed together a couple of hours ago -- enabled by the fact that about half of it is me quoting another blogger!), This Is Why I Write -- For Now, I discuss two responses to my writing that were deeply meaningful for me, and helped me to understand that my writing is still worthwhile, even if I'm not even close to meeting the writing goals I would set for myself, if I could.

In addition to thoughts about my own writing -- which I didn't get much time to express! -- I was inspired to choose this theme by a blog post by Peggy Munson. Her post, When Words Fail, for Her Circle Zine, is the best essay I've read on writing with the kind of disabilities and cognitive impairments she and I both have. It's an excellent piece of writing in its own right, but also, when I read it, I thought, "Yes! This! This is how it is for me!" Here is an excerpt to tantalize you:

I have been losing my cognitive acuity with alarming speed the past couple of years due to my worsening health. It’s the last in a long line of robberies by an illness that makes brains look on SPECT scans like those of AIDS dementia patients. I have written no real creative work since almost dying a couple of years ago (this short piece will take a lot out of me)—as I have been too brain-impaired to rub together words in the magical way that used to happen spontaneously. I’m trying to prevent more dissolution.

I hope you delight in it as much as I did.

Okay, on to the fifteen additional posts I got for this carnival!I loved being introduced to new bloggers I hadn't yet discovered, learning more deeply about the lives of those I knew, and the deep authenticity and desire to meet the challenge head-on in each and ever post.

A word about organization: Usually when I host a blog carnival, I put a lot of time and energy into finding shared themes, grouping them into categories, and other lovely administrativa to make your reading experience smooth and easy to navigate. While there are clearly several themes that arise in almost every post, I just did not have the spoons to be as "detail-oriented" (anal and perfectionistic) as I normally am. There are so many delicious posts, I'm going to be more minimalist and casual today, and let you unravel the threads of shared themes yourself.

So, get out your tray, plate, and forks, and get ready to sample a bit of everything in this all-you-can-read smorgasbord of blogging gals writing about writing!

I'll start with my favorite submission, which ironically is entitled, I stopped writing because. NTE's post at Never that Easy is gorgeous in its honesty, its poetic rhythm, and its personal, universal appeal. She carries this compelling complexity throughout the piece, hurtling toward a conclusion that continues to embrace the contradictions of writing (and life) with chronic illness. It was hard to choose which section to quote, but I chose this one: "I stopped writing because the dark didn't make sense to me, and the light was too bright. Because there was nothing to share when you are both inundated and empty."

I really related to Megan's beautiful post, Why I Write, at Objects in Mirror are Closer than They Appear. The detailed description of all the things her hands used to do really painted an intimate portrait. She starts out saying, "I have a Flannery O'Connor quote in my profile that reads 'I write to discover what I know,'" which led me to think she was writing for herself. But no, she is writing for someone else, which I found very touching. (I'll let you discover who that is.)

Wendy of Picnic With Ants  takes us on a journey through multiple blogs and diagnoses, each of which affected her relationship to writing. "With this blog, I have thrived. I started writing this blog to tell my story, living with chronic illnesses. To get it all out before I exploded. Then I found others who understood what I was going through." I love the honesty of Why Do I Write? PFAM carnival and its deeply felt sentiment. However, my favorite part is the very last sentence! You'll have to read it to find out.

It was a real pleasure to read Selena's post at Oh My Aches and Pains! A Friend Asks: So, Why Do You Write? is visually appealing, fluid and easy to read, and goes into depth on several aspects of why and how she writes, without ever losing the reader. Due to a pain syndrome, Selena uses Dragon NaturallySpeaking to type, which I would never have known, as her post is free of "speakos" (or Dragonisms, as I call them). And I'm tickled by the idea that she started writing as a competition with a friend: "Hence was born the "'Blog a Day in the Month of May' challenge in May of 2009. And the rest, as they say, is history."

For Laurie Edwards of A Chronic Dose, blogging is just one aspect of many in her writer's life. In On Why I Write, she also reveals that writing was a necessary part of coping with life as a sick child and now, as a blogger, she keeps writing about chronic illness as a way to connect with others: "I keep writing this blog because as my own journey has evolved . . . I continue to learn and be inspired by those I find on similar paths, facing similar challenges. . . . I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults." A clear, compelling, and uncluttered read, this post resonated for me on multiple levels.

Leslie of Getting Closer To Myself shares her path of becoming a blogger after having been a writer of many other forms throughout her life. I really enjoyed being with her through these transitions. She started blogging the week after she was diagnosed with rheumatoid arthritis and lupus: "I started writing to the cosmos.  It wasn’t quite an abyss because I imagined that there was at least one person out there reading what I was saying." As with many in our carnival today, blogging soon morphed into something with much greater meaning. Found out what in Why I Write (A Chronic Illness Blog)?

Kathy, The Fibrochondriac, writes of a home-coming of sorts -- to herself and what she feels now is the real reason for her blog, even if not everyone wishes to take this trip with her: "I’m losing subscribers by the dozen. I’m okay with that. I’ve found my passion, my purpose. I’m not going to force anyone to read my blog." Kathy reveals how she arrived here in  Why I write...yes fibromyalgia and Occupy in the same post.

Aviva of Sick Momma and I have something in common: We sometimes use our writing as a way to satisfy our nosiness our curiosity about the details of others' lives. In This Is Why I Write, Aviva describes a now-familiar journey -- from writing as a passion or a job to writing as a way to find community: "But something funny happened along the way, and blogging became more about community than I'd ever imagined." Tight, clean, and well-written, this post's journalistic roots make a complex subject an easy read.

Kelly at Fly With Hope is another of our contributors who has found community through blogging. Writing for my Spirit focuses in on what makes blogging special -- the gift it gives her that other writing does not: "I want to challenge myself and others to think of life with chronic illness in a different way. . . . I write because I want others to know that they are not alone and they do not need to be afraid to speak out about what they are going through or how they feel about it." And yet, even if nobody read her blog, Kelly would continue it! Find out why.

I just love the name of this blog: Lisa Loves to Write. Given this, the conclusion Lisa Tomey draws in her post, Why I Write, is unsurprising. I'll just leave it at that; a short and snappy post should have a concise introduction!

Jamie, the Chronic Migraine Warrior, gives a host of reasons for "Why I write," divided neatly into sections for those of us who find categorization soothing for our scattered brains. I particularly loved this section on writing and disability, because I went through this, too, and I know so many others who have said the same: "I (foolishly) thought that being unable to work would give me the opportunity to read and write more... while that's great in theory, it simply isn't the case. Sure, I have the time to read and write, but I don't have the energy (or cognitive ability)." Say it, sister!

Displaced of Gonna Eat Worms describes her awakening to the fact that she is a writer and that writing is a gift she doesn't want to squander: "I take praise of my writing with grace but also with rebuttal as I really think it is a gift and I have only made a minuscule effort to refine it. I'm just lucky." In Why I write, Displaced goes from there to what she writes (quite a list!) and the many needs writing fulfills.

Elisabeth of Redefining "Good" started writing for the same reason many of us do -- as an extension of her love of reading. Then life's twists and turns brought her from one form to another, but still stumbled with inconsistency until she discovered LiveJournal, which came to serve a very useful purpose indeed: "[LiveJournal] got me in the habit of writing regularly again, even if my only audience was myself. It helped me feel connected and coherent. And, eventually, it helped my doctor identify the beginnings of my illness and diagnose me." The continuation to blogging was not a simple, linear path, and I reveled in Elisabeth's honesty and the conclusions she ultimately draws in  Why Do I Write?  [Access note: There is snow falling on this blog. I found it only mildly distracting because the blog's background is also white, but if you have difficulty with moving graphics on the screen, it's something to be aware of.]

Kat of Join the Club! titled her post, What me a writer?!?! That gives a pretty strong hint that she has mixed feelings about (non-technical) writing. She blogs because there are times she feels "barely human," and "Sometimes I just need to scream at the world."

Last, but far from least, Phylor, of Phylor's Blog: chronic pain, life, and all that,sent me an email with her submission apologizing that her post was late, that maybe it wasn't really on topic, that her title wasn't imaginative enough, reassuring me I didn't have to use her post, etc. Well, I do not accept Phylor's apology. Why should I, when I was pleased to  include her post? In fact, she described the topic as "most appropriate, heart-wrenching, and necessary." I am trying to learn to cut myself some slack in my own life, and I think this would be a good idea for most (all?) of us with chronic illness. So, here is some slack, for Phylor, or any of the other bloggers who may need it: _____________________________________________. Use this space whenever you feel like you need more spaciousness. Moving on. In why i write: pfam blog carnival, Phylor, like so many of the bloggers today, has so many answers to why she writes, but I picked this one: "I guess because I can’t keep all the words, the feelings, the observations, the ponderings, the what ifs, the private inside."

Whew! There it is, folks. Please check out these fabulous posts and give the bloggers some love in their comments sections. I plan to do that, myself, this evening, after a nap! Love, love, love to you all for opening your hearts and sharing your precious words.

P.S. If you enjoyed this, and if you like the topics I pick and my hosting style, you're in luck! I'm hosting the December Disability Blog Carnival at After Gadget! Yes, I seem to be caught in a vortex of endless blog carnivals this autumn. Please pop by After Gadget in the next few days to learn the theme and deadline!

This Is Why I Write -- For Now

You might have noticed that I rarely post at this blog. I'm spending all my "spoons" on training Barnum (my service-dog-in-training), studying and practicing nonviolent communication (NVC) -- including staffing and promoting the NVC line, OccupyVoice, and working on Occupy at Home. All of which leaves little left over for blogging, and nothing for any other type of writing. I already have such limited energy, I am struggling to find balance. I long to find time for "creative writing" or paid writing, but it's not happening. For now.

But, oh, how I love to write. I could -- if I had the time and energy -- write a separate essay every day, for months, about each of the reasons I write. Writing is an essential part of who I am. When I write, I feel the most "me," the most connected to myself, the most alive. Writing and editing have been a source of income and of accomplishment. Writing has been my craft, my spiritual practice, my answer to that most dreaded of questions, "What do you do?"

In the last few years, I have very rarely been able to tap into that creative space, yet I have discovered a powerful reason -- a different kind of connection -- still occurs when I do write. Two similar events inspired me to choose the topic, "This Is Why I Write" for the PFAM blog carnival.

One of the forms of professional writing I have managed to squeeze in this past year is the interview. I enjoy interviewing people. Everyone has a story. Everyone has a unique way of revealing their story. I enjoy learning about and connecting with my subject, trying to bring out some essential truths in their lives in my questions and in my editing. One of several interviews I did this year for a disability-oriented magazine was about an artist with chronic illness. (We'll call her "Amber.") After the piece was published, I sent Amber a copy of her interview.

This is some of Amber's response to me when she received the profile.

Seeing it there, in print, I can't tell you how much that moved me. It's like it put air back in my lungs. . . . I wasn't expecting it to, but it almost felt like an incredible weight was lifted. Oh, I exist. I am a person. I do things. I am not gone. I haven't been totally eclipsed by this yet. . . . It was this quiet, powerful shift inside of me when I saw it. Like, I remember. I remember now.

I was moved to tears by this. I had no idea it would mean that much to her.

A few weeks later, I found out from blogger, Kathy, The Fibrochondriac, that my blogging had made an impact on her life -- that I'd inspired her to get involved in Occupy (long before I, myself, got involved in it, actually). She sent me an email, excerpted below (which she's given her permission for me to post) that totally blew me away, because I never thought of my blogging as particularly meaning much to anyone else but me.

I am really freaking tired right now but I just want to tell you...it is because of you. You are not afraid of nobody (ignore the grammar please). You are committed to making your life work for you. You are also committed to activism. Reading what you write makes me feel brave, like I can do it too. Although sitting outside all day in the cold wind was probably not in my body's best interest, it was definitely in my heart's. For me Occupy means equality. It means by the people for the people and NOT corporations. It means that we do not sideline and shove people into the slums because they are disabled by whatever...illness, lack of education, whatever. That particular list is long and my brain power is short. I'm just saying, you inspired me to be brave. I could have kept sitting at home and whining about things. But I'm healthy enough (I'll pay for it for the next couple days but whatever) to get out there and start organizing people and making things happen. And I may never get out in front of a group of people again, but I did it today and I think I did it pretty damned good. And it's all your fault :)

I told Kathy I was very moved by what she'd said and asked if I could quote her. These are excerpts from her replies. The first was written while she was riding in a car just about to arrive at a protest!

Sharon, you showed me that even stuck in a bed you can be a warrior. :-) I try really hard to channel you sometimes :-) and the lady from Harry's Law (Kathy Bates) because I can watch her be a badass too! And another sick warrior is Jennifer Jaff with Advocacy for Chronically I'll Patients. So you three are my goal. Gotta run!!

Later, Kathy expanded upon her three role models. Having grown up with no role models, she was surprised to meet John, whom she married. He treated her with "basic innate kindness. I finally met a person worth emulating."

After I got forced out of my job . . . I was so brain-fogged! . . . I tried to get on disability. And got turned down. So I tried to hire a lawyer but nobody understood the federal disability system or fibromyalgia. Then I found Jennifer Jaff. She was sick too, but she turned it into something good...free legal advice and assistance for chronically ill people. She worked out of her home so she could accommodate her Crohn's 

Then you came along :-) and you were far more "stuck" than I was, but that wasn't stopping you! You were training your own dog, you were making your life fit you. And then you'd tell a few stories of your life before and I'd get it. Your willingness just to work with what you have. You'd point out the problems (like stupid office policy of doctor not letting [your service dog] in) but then you'd come up with work arounds. YOU MAKE YOUR LIFE WORK!! That was so utterly profound to me. And then when you started your activism posts, yeah baby. Oh yeah! 

Then Occupy came along and that is helping me rise above the days I spend in bed. But since I first got sick, I've done a lot of good things for my health and I'm actually more mobile than I thought I was capable of. And with your stories of activism behind me, I knew I could do this! 

It may seem weird but you had a very profound effect on me. There are people that are sick, but still keep working. They annoy me because I want to be working too. Then there are people that are sick who do nothing but whine all day and it makes me want to slap tape over their mouths. Or glue their fingers together so they can't type. 

Then there's you. You've had you ass handed to you quite a few times by ticks and your health and loss. But you keep finding ways to make it work and to help other people while you're at it. How could you not inspire me to do the same? I just wanted to tell you all this while I had time to focus on you. 

Because the rest of the day...whew! We're hitting the mall tonight and some of us are doing a flash mob inside the mall. Fun times!! And I have to finish getting the newsletter out. Not easy work for me, but somebody has to do it! I haven't figured out what exactly I'm good at, where my groove is, but when I find it...that's where I will focus my energy. Right now it seems to be in organizing things.

Kathy was right -- it did seem a little weird to me, at first! I was just not expecting this outpouring of gratitude and affection. And I tend to be leery of using other people's reactions to my writing as a reason for writing.

In fact, it is a cherished bit of wisdom among artists (actors, writers, painters, or anyone who is creative for the public) that it is dangerous to believe your reviews. It is wise, and helps a writer's stability, to try only to absorb feedback from a trusted source whose sole goal is to help you hone your craft. "Do not take good reviews to heart," the saying goes, "because if you believe what they say about you when they're raving about how wonderful you are, you're also going to believe them when they're raving about how terrible you are."

External measurements of "success," or "talent," or "gift" are dangerous this way. We can fall in love with our image in the water, smiling back at us, and do nothing but beam at ourselves.

Ultimately, what I'm talking about is balance, and that cuts both ways. For the last several years, I have thought pretty meanly of myself. I suffered a great many losses and traumas, and I came to believe others' bad opinions of me along the way. Shame and humiliation are not character-building; they are destructive.

Now I am rebuilding my "me," one brick at a time. Some dog training here (among trainers who are compassionate to both dogs and people), some blogging there (with a readership that is kind), some NVC there (which has helped me more than anything else has to teach me to be compassionate with myself), and ever-so-occasionally, a little creative writing, just to remind myself that the logophile still resides within, no matter how hard she may be for me to access.

Right now, I'm allowing people like Kathy and Amber to hold this space for me, this space of knowing that my writing matters. There's an essential difference, I've realized, between what Kathy and Amber said and between people who say, "Oh, your writing is so great. Why haven't you written a book?" (I'll rant about that another time.) The people who just say, "Oh, you're such a great writer," are -- from an NVC perspective -- judging me. (Judgement in NVC is not defined solely as negative interpretations of a person, but any interpretation of the value of a person.) The people telling me I "should" write a book are (unintentionally) conveying to me that my worth is based on something I do, which is writing. And then the art and craft of that work gets all tangled up in feelings that I have to write, or I'll be worthless. Therein lies the danger.

Amber and Kathy, on the other hand, experienced my writing as a gift. For Amber, the gift was that I wrote about her, and she got to see herself reflected in my heart and mind. For Kathy, the gift was not how I wrote, but what I wrote about -- my life, my day-to-day thoughts, feelings, and doings. The words were not significant. She just saw something about the way I was living my life that triggered ideas and thoughts already available to her about how she wanted to live her life. I feel pretty certain that if she hadn't gotten the ideas from me, she would have found them elsewhere. I was fortunate enough to be credited with being a catalyst.

For now, this is how I will keep writing, because I cannot live up to my own internal critics' ideas of what I want my writing to be and how I want it to feel. I will keep in mind that just the act of writing might relay some useful tidbit to someone else that they will find helpful, that they can put to use in their life. Thus, we are both creating the story. We are both -- we are all -- the writing.

Call for Subs: PFAM Blog Carnival! Writing & Disability

I'm hosting the upcoming edition of the Patients for a Moment (PFAM) blog carnival! I hope you will participate!

(And I'm late in getting this call for subs up. Eek! Life got chaotic, and I lost track of the date.)

This is my second time hosting. My first time hosting PFAM was a couple of months ago, at my other blog, After Gadget.

Since this blog is my writing-related blog, my topic is writing related. When I became disabled by chronic illness in 1995, I decided to try to look at the losses of my job and career and other activities as a way to give me more time to write. That turned out to be less doable than I'd thought, but writing has been a central part of my life, nonetheless. It didn't take me long to discover that many people who've recently acquired an illness or disability also have the "now I can focus more on my writing/painting/photography" response. It got to be sort of a joke in my chronic illness support group that every new member said something along those lines.

Since I've entered the blogosphere I've noticed that there are an awful lot of bloggers and writers with disabilities and chronic illness, and I sometimes wonder why. Am I just more aware of those with disabilities because that's who I'm drawn to? Is this how many of us have found a way to incorporate writing into our lives? Does blogging lend itself particularly to writing about lives with chronic conditions? Is there something about becoming ill that compels many of us to write? Or is it something else?

This is your chance to tell me and the world why you do what you do. The topic is, "This is why I write." I'm eager to read other chronically ill or disabled bloggers' thoughts on being a writer with a disability or chronic condition! Elaboration below (and above) are a jumping-off point. You don't have to answer all these questions, although you can if you like. Mostly, they are prompts to get you going.

So, bloggers, why do you write? Does it add something to your life that nothing else does? What does it mean that you spend your precious spoons on writing? If your disability affects your writing -- your ability to type or find words or meet deadlines, for example -- why do you persist? (And if you like, how do you persist?) If you write other forms in addition to blogs, such as fiction, poetry, creative nonfiction, freelance journalism, etc., what's the driving force? Do you think you'd write/blog more or less if you didn't have a chronic condition or disability?

I'm extending the deadline for submissions is Monday, December 5, by midnight of whatever time zone you're in (-ish) because I'm late in getting this announcement up. I also know it can be hard to meet deadlines when you're ill. (Take me as an example!) Therefore, if you are writing something for the carnival and need a little extra time, please contact me, and we'll try to work something out so I can squeeze you in.

The blog will go up Wednesday, December 7.

Of course, it's lovely if you write something new just for this edition of PFAM, but if you find yourself running out of time, and you have a post already up that answers this question, please send it along. To submit, please comment on this post with the following information:

• Your name (as you'd like it to appear in the post).
• Your blog's name.
• Your post's title.
• Your post's URL.

I really look forward to reading your posts!

I encourage you to try to make your posts for this edition of PFAM as accessible as possible to people with a wide range of disabilities, including putting descriptive alt tags on any photos, transcriptions for any videos, and disabling word verification for comments. This will not only enable more people to enjoy your work and to experience greater ease in navigating the web, but it may bring you new readers and possibly followers and subscribers! Find out details about steps you can take to make your blog more accessible (many of which are very easy) on the Assistance Dog Blog Carnival page. Thank you for your consideration!

Please also spread the word on Twitter, Facebook, on your blog, and everywhere else! Thanks so much!

Disabled Writers Need Not Submit

This started out as a simple, short gripe. Unfortunately, someone came along, during the two hours I was writing it, and expanded on my point.

My original point was this:

Apparently it's not challenging enough to be a writer with multiple, disabling chronic illnesses that prevent you from working full-time (or really, even part-time) or taking assignments that involve going anywhere or reading anything (especially reading it with comprehension or retention) or doing things by, you know, deadline. And obviously you can forget about being able to go to classes or writing groups or conferences or workshops.

But that doesn't mean it's impossible, right? It's only almost impossible. (It's the American way!) So, there's hope.

As someone who somehow manages to be ridiculously optimistic while giving everyone the impression that she's a complete pessimist, I continue to look for writing opportunities. Whenever I look through calls for submissions, I always skip over the fellowships and artists-in-residence listings, because those require you to go somewhere (a college, a retreat center, etcetera), and there are so, so, so many reasons why that would be impossible for me, it's not worth listing.

Be that as-it-shouldn't-be, there are also calls for anthologies and magazines, and writing contests. These are all game -- normally.

Lately, I've been on a flash fiction tear, so when I saw a post about Esquire Magazine's flash fiction contest, I decided to enter it. I read through the rules, and came to this:

Entrants must be available to attend and participate in the workshop in New York City on dates and at locations to be scheduled by Sponsor and Aspen Writer's Foundation if selected as a finalist and to attend and participate the 2012 Aspen Summer Words if selected as the winner. Once chosen, finalists must confirm their attendance with details of travel arrangements on or before October 17, 2011, otherwise another finalist will be selected.

Does Esquire have any idea of the number of people they've just eliminated from even entering? This includes people (mostly women) who can't leave their kids behind (the prize pays for plane fare but not childcare!) and people whose jobs don't provide that kind of flexibility (the prize does not cover time off from work).

It also includes lots and lots of disabled people. Everyone with multiple chemical sensitivity. Everyone who has an illness that requires frequent or on-going treatment at a specialized clinic or hospital (dialysis, cancer treatment) at defined intervals. Everyone who is confined to home or bed by physical illness. People with various types of mental illness, such as agoraphobia or various other anxiety disorders, and on and on.

Really, I'd like the organizers to change the name of this contest to the "Esquire Flash Fiction Contest for Writers Who Can Travel." Catchy, no?

Not that this is new. When Peggy Munson, who, like me, has severe MCS, CFIDS, and Lyme disease, was a finalist for a Lambda Literary Award, I was excited. In part, this was because she's my friend, and even though I wasn't able to read her book, I know she's a phenomenal writer and deserved it. I was also excited because, since she could not be physically present at all the various Lammy events, I naively thought that the organizers and the rest of the GLBT literary establishment might have to absorb the tiniest bit of awareness about these illnesses.

Instead, what happened was that Peggy sent a DVD for one of the readings, and the organizers chose not to play the DVD, even though they'd advertised her as reading, and it had been in the plans for the reading. It turned into a nice brouhaha about censorship of femmes (as not real lesbians), of genderqueerness (because some of her characters were not identifiably one gender or another), and of the invisibilizing of people with disabilities.

Since that time, it has been my secret desire (now revealed!) to get my work into a big enough arena that nondisabled people would have to care about remote access. (Or even, to remotely care about access.) That, if what I did was a big enough deal, they would basically be forced to create access. (See what I mean about being ridiculously optimistic?)

Usually what happens when my work is published in an anthology is that the editor and/or other contributors set up readings. I email them and tell them I'd love to participate, but that I can't travel due to my disabilities and ask if I could participate by speakerphone or other remote means. Usually the response I get is:


(Shh. That's the sound of silence.

Sometimes they say that they will try, and then it doesn't work out. Sometimes they just flat-out say no. The only readings I have given remotely are those organized by me or someone else with a disability.

I have actually given readings by speakerphone -- and answered questions that way -- and by audio tape. I have set up readings for people (such as Peggy) by DVD. Peggy and I co-wrote a piece for a reading that was read by one of the other writers, since we were both too sick to attend. We heard that it went over very well, in large part because the person reading it did such a terrific job.

Once, I was to attend a reading by speakerphone, but the speakerphone didn't work. I had sent ahead a tape and player of my reading because I never know if my voice will work day-to-day anyway. But I wanted to take part in the discussion (which was terrific). Thus, during the discussion about the book, someone passed a cell-phone to whomever in the audience or among the readers was making a comment or asking a question so that I could hear what was being said. Everyone else, who wasn't speaking, tried to be very quiet, and everyone took turns. The entire room participated in creating access, and the overwhelming comment from everyone was how much they enjoyed that -- that the phone became like the "talking stick."

By now, there are even more ways to communicate from a distance, using the internet, so you would think there would be even more openness to access, right? Well, ironically, while I was writing this post (I promise you, I had no idea this would happen), a friend of mine who teaches disability studies at a university asked on Facebook, "When you cannot be present at a conference in person, what is your favorite way to get information about it? ... Facebook? Twitter?..."

She had started her note by particularly asking her "DS people." I assumed DS meant disability studies, and this clearly seemed to me to be a disability access question. Several people replied, including one who said that presenters should definitely not Skype in because it's "boring," "ridiculous," and "complicated." She added, "Nobody's that important.... If you're sick, stay home."

It turned out that this conference is about disability, which I don't think that commenter knew. I'm sure she wasn't thinking about people who are sick all the time, who stay home all the time, like me. I'm sure she wasn't intending to be hurtful and offensive. Probably, if I asked her, she would say, "I wasn't thinking about disabled/chronically ill people. I didn't mean it like that." (Since this just happened, she might very well post an apology or explanation, but she only said what most people think.)

So, let's assume that, like most people, she will respond by apologizing and saying, "I wasn't thinking." That is the problem. People usually don't "mean it like that," but it doesn't much matter, because it still means they don't think about us at all -- that we exist, that we have something to offer, even if we can't join them in meatspace.

Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with.

The Esquire contest is for a 78-word piece of flash fiction. Here, off the top of my head, is mine (which I obviously won't be sending them):

John Esquire finished reading, dropped the paper on his desk, and threw his hands in the air.

"My God!" He shrieked, waving the manuscript. "This is the best story, without doubt!"

"Really?" His waifish underling minced over, nervously tugging her skirt. "What's that note attached to it?"

"Please note," she read. "I'm ill and cannot travel."

"Fuck that," John crumpled the paper. "Nobody's that important," he said, earning two points as Virginia Woolf's submission landed in the trash.

P.S. I thought I wasn't getting any comments, but someone emailed me that she did comment on my last blog post, but it didn't show up. If you're having trouble commenting, please let me know. Mention it in the comments!

The Compensations and Decompensations of (Unpaid) Writing

I've worked on the beginnings of so many posts for this blog. There are too many topics I want to delve into about being a writer who has disabilities. I have a catalog in my head of all the things writers "must" do to be real writers, which I cannot do:

• Read voraciously. (I have a print disability.)
• Write a certain number of words or pages every day. I don't even write every day. (I don't do anything every day, except breathe and make it to the next day.)
• Finish what you start. (That I finish any of the writing I start is because I have learned how to blog by lowering my standards steadily and repeatedly, until my blog has become something I could never have imagined in the beginning.)
• Attend writing conferences, workshops, or classes; network and meet other writers. (Maybe if classes and conferences could be held in my bedroom, it would be a start.)

This list is a puny beginning of how disability affects my writing. There are so many other posts I've started where I haven't gone further than a concept and a couple of sentences: How brain injury affects my word choices and the styles of writing I pursue  (such as flash and slipstream). How I manage, physically, to write, when I'm immobile and exhausted. Why I have a thesaurus in my bed. Why I publish erotica when, for most of the last five years, I've had no sexual ability or interest. The effects of mundane living and a sluggish mind on the ability to grok metaphor and make poetic leaps.

It's  such a struggle to introduce myself, which is to say, to introduce my life with disability, to a reader, an audience, a list-serv, etc. It seems to take a lot of effort, a lot of words, a lot of metaphor and explanation, to convey how small my life is. The topic of limitedness is too big.

Now, having written this, having gotten past my usual stall-out of a two-sentence start with a couple of links to buttress my point, the fear has its arms around my neck, hanging on me like a cape. The shames have flown in as a flock, landed on me, and started pecking. The jury is seated and taking these notes: "She is reifying every stereotype of disability. She is fitting herself into the tropes of the Poster Child and the SuperCrip. Those of us who are new to her are bored senseless. We don't want to hear her whining. We came here for entertainment and to learn something new that we can use. Those who already know her are even more bored. We've heard this all before. None of us goes to a blog for a pity party."

Except, Disability-Shaming Greek Chorus of My Mind, this is not a pity party. It's a reality excavation. The problem is that in this culture, a frank discussion of living with disability is filtered through the pity lens. The problem is that it's hard for me to talk about writing without talking about how much pain it causes, how much harm it does, even as it nourishes me and makes me feel more alive than anything else does. I suppose it was inevitable that an adrenaline junkie who is unable to engage in any form of physical exertion would find my thrills by leaping off mental mountains, and keep crashing to earth after.

Here's the issue that most people find very hard to understand: Writing makes me sick. It literally hurts me. It can be excruciating. I am trying to make a career of it, but I keep ending up writing things that don't pay. And I love it. In fact, the harder I work, the more excited I am about what I write, the harder I crash after. Which prevents me from writing again until I have recovered from that crash. Which makes it damn hard to have continuity in my work.

Today is a great example. Last month, I found out about the 5MinuteFiction challenge at Write Me! Every Tuesday at 1:30 PM, Leah Petersen posts a writing prompt on her blog. Writers have until 1:45 (15 minutes) to write a story that follows the prompt and post it as a comment to her blog. I was the winner the first week I tried it, and I've been a finalist the second, third, and fourth times. (The last of which is today. So, if you haven't read the final five yet, please read and vote!)

There are several aspects of the challenge that suit me. It's time limited. I only have to work for fifteen minutes, and then I'm done. No revising, no submission process, no carrying a long plot or argument through over several pages. The fact that it's scheduled at a regular interval helps because I can plan ahead and try to rest the day before.

Many of these factors also make it problematic. Doing anything on a deadline or in a hurry is a huge struggle for me. I never know how functional I'll be from one day (or moment) to the next. The longer the piece, and the shorter the deadline, the more unlikely I am not to meet it. This is not just because of physical functionality that gets in the way -- exhaustion or pain that makes typing (and everything else) hard or impossible -- but cognitive issues, such as word-retrieval problems. Normally, I use a lot of writing time trying to think of fairly basic words.

It's not so much what happens while I'm writing, though, as what happens after. One of my illnesses, CFIDS/ME is characterized by "post-exertional malaise," which means that within 24 hours of exerting, you get much sicker. This can last for days, weeks, months, years, or forever. And with CFIDS/ME, the level at which "strenuous" is marked is much, much lower than anyone without this disease, or a very similar one, can imagine. It is so low that activities that you never thought of as activities, that you never thought involved any exertion, are utterly exhausting: speaking, listening, having a facial expression, breathing.

Participating in 5MinuteFiction is incredibly demanding because it involves physical exertion (typing -- and typing fast -- and sitting up enough to see my computer screen, and not taking any breaks to rest my body or mind during those fifteen minutes) and tremendous mental exertion -- thinking up plots, rejecting plot ideas that I think others will use, getting into a character's head, choosing my words, trying to use correct grammar and punctuation and spelling, and doing it all as fast as I can.

It's this last bit, the "fast" part, that really does me in. Theories of CFIDS/ME all involve adrenal insufficiency and adrenal burnout. Any time I experience a rush of emotion, be it anger, joy, or sorrow, I will feel it in my body later. And if I use any muscles while going through those emotions -- if my muscles clench in anger or tighten during stress (whether good or bad), and if, God forbid, I cry -- later, those muscles and their neighboring bones and joints will be painful, inflamed, and possibly immobilizing. Crying and laughing hard not only use a lot of muscles, they also often trigger migraines.

Today was the worst payback from any of the Tuesday writing challenges so far. This is partly because yesterday was not a restful day, so I was starting out with a major energy debt. And it's partly because I'm using a new computer which doesn't allow me to lie flat. My new computer is much taller than my old computer, so even though I'm in bed and I have a support pillow, I have to be propped up, semi-sitting, to a certain extent. This means I'm using more muscles in my entire body, especially my abdomen, which is particularly susceptible to problems from overuse.

I used as many cushions as I could, but but by the time the fifteen minutes were up, my hands and feet were tremoring, and I had trouble controlling them. Despite having taken pain medication, my entire body ached so much I couldn't move some parts, and my legs and feet, in particular, were burning. I'd also lost the ability to speak, which is a symptom I developed after getting infected with Lyme disease and babesia in 2007. It used to be full-time. Now it's just occasional, when I have a really "bad day." It's partly neurological -- apraxia of the vocal cords -- but it seems to be made worse by abdominal muscle stress.

This is what fifteen minutes of creative writing can do to me. Since 1:30, I've been out of bed once, to pee, which required the use of my powerchair and service dog. I haven't been able to brush my teeth, flush my PICC line, give myself my shots, train my dog (who is quite grouchy about it!), talk (except for limited sign language), or much of anything else -- except write this blog. Writing this blog is utterly foolish! I am absolutely writing checks my body can't cash, but I get so tired of waiting for the next day, the next day, the next day to write what I'm thinking. I was excited by what I wrote today, because I liked it better than what I wrote the last couple of weeks, and I am tired of having the same post on this blog, week after week. So, when the pain meds kicked in, and with my PCA assisting me, and having figured out how to lie flat and type, I have been spending the rest of the day writing this post.

Because, as much as writing hurts me, it is also absolutely necessary for my survival. When I first became ill, I decided that my life could and would still be worthwhile with disability, and I put writing at the center of that creation of meaning. Later, when I became much sicker and lost the ability to speak and move, when I was in agonizing pain all the time, I told my best friend that I had to write. That my life had no meaning without writing. I was very angry when I was telling her this, because I could not write, then. I was physically and cognitively unable. I had lost interest in writing; I had no creative thoughts; I didn't know who I was without that. My most important goal was to get well enough to write again.

She thought my priorities were unbalanced. She flat-out told me that my strong feeling that writing was essential to who I was "made no sense." She was angry. She told me I should not feel the way I did. Looking back, I think she must have felt hurt that I didn't say my relationships with my friends were what was most important and what gave my life the most meaning. I know that that was true for her, because we'd discussed it. That was how she found meaning in her life. I'm sure that disagreement contributed to her decision not to be my friend anymore. I regret a lot of what transpired between us, but I don't regret saying that writing gives my life meaning, because that is true.

This might be easier for non-writers to understand if I was an investigative journalist, bringing to light great injustices. Or if I was a deeply spiritual person, writing novels that uplifted the soul. Or if I wrote poetry about the transcendent beauty of nature, and how a wild bird is like love.

But you'll just have to take my word for it that telling the story of a man who falls in love with an egg in less than 200 words, or describing my service-dog-in-training pulling my powerchair over on top of me, or writing a poem about what steps are involved in me getting out of bed is what makes my world go round. When I am lying in utter stillness in the minutes or hours or days after writing one of these pieces, unable to talk on the phone or type an email or train my dog, I can feel a sense of peace and joy at what I lived in those moments of writing. I know that all of that -- that unnameable force, call it juice, call it creativity, call it other people living in your mind -- is still in me, somewhere. Those times allow me to relax into the pain and exhaustion and just be with it, which is a much better way to live than to fight against it. I can be happy. In those few moments, I can even feel fulfilled.

I think that's why it was so important to me to write this blog today, in the wake of that utterly draining little piece of flash. Because even though it's fiction, and I did not grow up with a disability, and I did not attend a hospital school, I have been living my own Rapunzel story for sixteen years, and I just know people out there do want to read it, will want to read it, if it is compelling enough. I have to find a way to tell it, because if I don't, who will? There's the meaning, for me. And I guess if my inconsequential writing reaches someone -- or even if it doesn't, because it's already reached me -- that's what "makes sense."

Read My Fiction, Poetry & Nonfiction Online

Ta-da!

Thanks very much to everyone who voted for my story at the 5 Minute Fiction Challenge. I won! A lovely surprise for my first time trying a timed writing contest. I definitely want to do it again.

In all honesty, I was worried that I only won because I tweeted, blogged, and posted on Facebook about the contest. I was concerned that my friends would vote for me just because they were trying to be supportive. However, two people emailed me today, independently, to tell me that they would not have voted for my story if it wasn't the best, and in their opinion it was. So, I feel relieved.

You see, I suffer from impostor syndrome. Someday I'll probably devote a post or ten to that topic. Writers are particularly prone to the condition, especially if they are women or otherwise marginalized. Such as, oh, say, having a disability, just as a random theoretical example.

However, this contest was actually one in a string of writing-related pats-on-the-back I've received lately, so I was on quite a high at being a finalist. I was starting to feel downright almost-not-totally wracked by self-doubt. Lest I get too comfortable however, I received a rejection of a poetry submission about an hour after I was declared a finalist in the flash fiction contest. It's all part of the Great Circle of Uncertainty.

All this contest excitement and new blog building, combined with going on a searching-for-submission-opportunities binge has left me wiped out. I need more sleep, more spacing out, and more dog training. Too much business-of-writing keeps me in my head, and then I get that "squirrel-on-a-wheel" sensation where I can't stop my thoughts from running around in a frenzy inside the cage of my skull, searching for bird feeders to empty, with Barnum jumping up to put his paws on the window sills and watching them for hours. You see? I have totally lost control of my metaphors.

Anynoodle (yes, I'm carrying my little neologism with me from After Gadget), if you liked my flash piece, you might also like to read some of my other published fiction, poetry, essays, and humor columns. I have gathered a whole bunch of links on my new page, "Read My Published Works."

These pieces are all online, so they're free! Eventually, I'll put up links for the anthologies and chapbooks that have some of my best stuff, but not tonight.

And hey, let me know you're out there! It's lonely here with just me and the squirrel in my brain. (Yes, I know Barnum is here, too, but he's much too big to fit in my brain.) Please comment: tell me what you like, and what you'd like to see more of. Enjoy!

Peace,
Sharon

Finalist in my First Foray into Five-Minute Fiction!

Hello to my friends and readers from After Gadget! Thank you for following me here. And welcome to those who are "meeting" me for the first time. Here's my first official post at my writing-and-non-dog blog!

I discovered a fabulous blog a few days ago, Write Me! which hosts the #5MinuteFiction contest. The deal is that every week, blogger Leah Petersen puts up a prompt at 1:30 PM Eastern Time, and then you have until 1:45 PM to write a short story and post it as a comment!

As soon as I read past contests, I knew I wanted to enter the next one, but the chances of me waking up in time, being functional, and being able to do anything fast, were extremely slim. However, I've been getting a lot of pats on the back as a writer in the last few weeks, which has given me additional confidence. So, why the hell not try?

I woke up at 1 PM today, of course completely forgetting that it was Tuesday. I was in a fair amount of pain and just lying in bed trying to decide what I was capable of, when I clicked my Twitter tab and saw the reminder for the contest.

What does a chronically ill writer do to get prepared for a writing contest in less than half an hour?

• Pee! I just knew as soon as the contest started, I'd have to pee, so I got that out of the way. Then I was in more pain and exhaustion, but some things cannot be avoided.
• Find my keyboard, mouse, lap desk, and clipboard. I use my clipboard as my mouse pad. It had fallen off my bed during the night. Searching and finding it was another time-and-energy drain.
• Arrange pillows for maximum comfort and functionality (arm bolstering).
• Ignore the ringing telephone. (That reminds me -- gotta check my voicemail!)
• Hope like hell that my computer and internet connection cooperate.

By the time I did all that, it was 1:31! I looked at the prompt and tried to "multitask" by thinking about what I wanted to write while I filled in my name, email, and blog address.

I actually used a fair amount of time dithering about which blog address to give. I decided to give this one, my new writing one, even though I didn't have any content yet. Hell, I don't even have my widgets and links and such set up. It's just soooo unlike me to not get all my ducks in a row before going public. But this is part of my new strategy of believing I will actually accomplish the things I want to accomplish. Blogging with the confidence that eventually, I'll have the rest of this site looking how I want.

Of course, if I'd had more than 10 minutes to write, I'd have revised, cut, tightened, proofed, and otherwise tweaked the story. But much like videotaping my dog-training sessions, seeing what I wrote after that thinking-on-your-feet burst has already helped me to see what I like about what I wrote, and what I don't like. (Guess which one wins out?) Yes, there's a lot I wish I'd done differently, that I want to do better next time.

Oh yes, there will be a next time. I'm hooked. I'm pretty sure that this weekly contest, when I'm able to participate, will make me a better writer, especially of, as Anne Lamott says, "Shitty first drafts."

Anyway, I'm one of the five finalists out of 30-something stories, I think. (I can't remember how many there were.)

What does a chronically ill writer do after she has finished the writing contest? Take her pain medication and try to get the word out about being a finalist! These two activities turn out to be a bad match, today. I thought I'd had enough breakfast before taking my meds, but apparently not, because I'm all fuzzy-headed now. I hope this post makes sense!

The winner is announced tomorrow at 9:00 AM Eastern Time, so please go to Write Me! and read the Week 64 Finalists, and vote! Obviously, I'd like it if you voted for me, but really you should vote for the story you think deserves to win.

This is a fun way to start my writing blog.

P.S. Please spread the word about the contest and voting, and about my new blog!

This Blog Is Under Construction

Welcome!

This will be my blog related to the writer's life:

• Links to my written work,
• snippets of forthcoming or published pieces,
• how I approach writing, 
• what I'm working on at the moment, 
• and occasional forays into some of my favorite topics -- erotica, disability, and humor.

Until I get going here, please stop by my very active (and dog-centric) blog, After Gadget. Stay tuned.

The bedhead,

-Sharon