Category Archives: Life Disrupted

Illness, Wellness, and Storytellers: Publication Day Musings

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So today is the official publication date for my book, which is pretty exciting. I’ve seen photographic evidence of Life Disrupted officially on bookshelves, and I’m looking forward to walking into a store and seeing it with my own eyes.

Given its content, I find it somewhat amusing and fitting that if I don’t make it to a store tonight it is because I am sidelined with a freak viral infection of the lymph nodes in my abdomen. I mean, really, I couldn’t have scripted that life disruption better if I’d tried. (And oh yes, I did just make that terrible pun, but it’s my first and last offense on that front, I promise).

Anyway, while my mind is very much on writing these days, I couldn’t help but linger over this post by Felicia Sullivan, a terrific writer and supporter of writers who has an amazing memoir out right now. In this post she’s writing a review of Petite Anglaise, but what resonates most with me are her thoughts on blogging and its function in our lives as writers:

“This book is timely, however, when we’re all discussing “oversharing” and how our online “personas” affect our lives offline. One’s life should be lived not be crafted as a series of anecdotes fit for a blog post, so admittedly I came to this book with pre-conceived views on what parts of one’s life should be kept sacred.”

I couldn’t agree more. Of course life events are where writers and bloggers get their inspiration and everyone approaches how they blog differently, but Sullivan’s position that life shouldn’t be lived to serve as writing fodder is right on the mark. And I can’t help but feel that for people writing about disease/medicine, that rings especially true.

How do we sift through the symptoms and mishaps and complications and come up with something worth sharing (that isn’t over-sharing?) I’m curious what those of you in the trenches of medblogging have to say about that, because again that line is not only blurry but it varies greatly depending on writing style and approach. I don’t ever want my conditions to become why I write—after all, who wants to hear daily that it’s hard to breathe? That isn’t news or newsworthy in my world; as I’ve said before, it’s merely an occupational hazard of being me. It’s a thought trapped in a vacuum, when what I want is to open things up a bit.

But more than that, I find myself thinking about those parts of our lives we keep sacred and off-line, something even more present in light of the fact that it’s publication day for The Book. Obviously details of my personal life make up a lot of the book, as do personal details of several other patients. In a way, I faced the same questions and decisions in writing the book that I face when I blog—is there an added value to bringing in a particular story or anecdote? Does it advance or complicate an idea that’s important enough to warrant a reader’s time and attention?

And more universally, how do we know what stories are ours to tell and which aren’t? Anyone who writes nonfiction or blogs faces that question. Just because someone is or was in our lives, does that mean it’s fair game to include their details and their lives in our stories, especially if a medical situation is involved? Yet at the same time, our lives are so linked to the people in them that there’s no way our stories don’t involve them.

Personally, I err on the conservative side. I rarely use names on my blog unless it’s a public figure, and it isn’t, I just use first names or the ubiquitous “my friend” or “a loved one.” I wonder if that takes away from the human interest side of the story, but I’d rather take that risk. I don’t think there’s one ultimate solution to this question of whose story is it to tell, and it’s definitely not a problem unique to blogging—it’s just more exaggerated by the immediacy of blogging.

Anyway, before you rush out to buy a copy of my book (you are going to get a copy, right?), here are some links that are very apropos to this discussion on storytelling:

Check out this week’s edition of Grand Rounds over at Shrink Rap. Then, head to ChronicBabe where my friend (and a patient whose story is in my book!) Jenni Prokopy is having an essay contest to celebrate ChronicBabe’s Third Anniversary.

Happy reading on all accounts!

Interviews, Inspiration, and Links

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I am used to being the one conducting interviews, so I was anxious to see how my Author Q&A with Library Journal went. Check it out here.

Since we’re (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:

“What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you’re ready to sit down and write something, ready to present something to the world?

Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one’s hair, talking to oneself, or sitting stock still and staring into space…

…We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking.”

For anyone logging long hours doing work that isn’t always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, “So what do you do all day?”

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So I’m a day late posting, but here’s hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.

Education, Disrupted

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This is how this post should have started:

“Today I participated in the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s
Chronic Illness Initiative.”

Instead, this is the real beginning:

Today I was supposed to be in Chicago speaking at the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s Chronic Illness Initiative.

Instead, I’m lying prone on the couch and various illness paraphernalia surrounds me. I’m somewhat confident I’ve skirted a hospitalization, but still wary of the possibility.

Um, yes. The speaker who was supposed to train faculty on handling students with chronic illness and offer strategies to chronically ill college students is a no-show because she came down with a particularly vicious respiratory infection. My life is nothing if not dependably ironic, no?

I don’t have enough lung capacity to do public speaking right now, but I can type. So instead of the presentations I planned to deliver, let’s see if this disruption can yield something of value anyway.

First off, the
Chronic Illness Initiative (CII) at DePaul is a truly amazing program. I first learned of it when researching a chapter in my book and was so impressed with the scope and mission of the program. In summary, it allows chronically ill students to get their degree at their own pace. It also serves as a liaison between students and faculty; educates faculty and staff about chronic illness; and assists students in planning viable schedules, among many other vital services.

Why is the CII so forward-thinking and necessary? Like the workplace, academia is not always equipped to handle the particular challenges of chronic illness. In the classroom, these challenges include prolonged absences, seasonal fluctuations in illness, unpredictable illness flares, etc.

Sometimes, students are lumped in with offices that cater to students with learning disabilities or physical disabilities, populations with very different needs than those of students with “invisible” chronic illnesses. In other places, students and instructors are left to devise ad hoc policies on their own which is also problematic, especially if the particular manifestations of a student’s illness are not understood.

I spent fours years in the trenches trying to balance serious chronic illness with a challenging college course load and GPA worries. I had faculty and administrators who learned with me and worked with me, and I made it through. I know firsthand how important disease education, communication, and accountability are to this dynamic, and I know that if you advocate for your education you can succeed without jeopardizing your health.

But I also know not every student has such good experiences. And I know that it doesn’t need to be as hard as it is for so many, or even as hard as it was for me. That’s where the CII and the learning objectives of this year’s symposium come in—from the benefits of forming a coalition between medical professionals and administrators to understanding the disabling nature of fatigue to identifying the problems students face when transitioning to independent care of their conditions, this year’s meeting promises to cover many timely and necessary issues.

The mission and goals of the CII are hopefully ones that in time will be replicated on college campuses throughout the country. Until there are more universal policies regarding issues like illness disclosure, absences due to chronic illness, or flexibility with course load and pacing, chronic illness will pose a greater obstacle to higher education than it needs to be.

I wish I was there soaking it all up and learning from my colleagues and from the students. But I’m trying to roll with it and accept the unpredictability of chronic illness, something the students of the CII know doesn’t defer to tests or deadlines—or, in my case, a symposium, either.

Library Journal and Grand Rounds…

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So I’m jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.

Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!

Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week–check out the multitude of heavy-hitting posts.

It’s Official!

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Amy Tenderich of DiabetesMine.com has posted the first official review of Life Disrupted. Check it out here.

While you’re clicking away, be sure to read this week’s Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it’s a compilation of the best medical writing out there, and this week’s entries are certainly compelling!

Stay tuned for a scintillating look at the incidental economics of illness…

New Look, New Links, New Book Info

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Okay, so a real post—you know, cohesive thoughts, even the occasional insight—is coming shortly, but I did want to take a moment to point out some exciting developments:

First of all, you’ve probably noticed a completely revamped and streamlined site design, one that will hopefully make navigating A Chronic Dose easier and more efficient. Plus, it looks pretty.

A more important addition is the cover image of my book, Life Disrupted: Getting Real About Chronic Illness, which now has a permanent place on the sidebar and is also seen here:

Lastly, you’ll notice that the book is now available for pre-order sales. To order your copy from Amazon, click here now! Go! Place your order! I’ll wait.

And don’t forget you can read the advance quotes right here.

More book news is forthcoming but for now, stay tuned for that real post I promised above. Disastrous summer camp tales? Yeah, I’ve got those….

Some Life Disrupted Literary Love…

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It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!

I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!

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In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!

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In keeping with the writing theme, check out this week’s Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.