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.