Thursday, May 22, 2008

Education, Disrupted

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.


Lyrehca said...

Aw, sorry to read this. I know you were looking forward to going!

Unknown said...

wow what a great program! I rememebr when i was in journalism school, a girl in my calss had TMJ that flared up and she was in bed in horrific pain for a week, then could not talk well for several weeks. The dean told her maybe she should drop out because the career she was pursuing was just as stressful as the training for it and if she could not handle the training she wasn't cut out to be a journalist. I was stunned a that. (She fiinshed BTW and my current job is the least stressful job I have ever had so the Mr dean, not all J jobs suck the life out of people).

I'm sorry you couldn't go to teh meeting tho.

Anonymous said...


Anonymous said...

my dad's checking out pathology slides of PCD on-line :) and my mom is awaiting your book!! she wants to rate it on amazon :) i hope you feel mo' bettah...

Girl, Dislocated said...

AAARRGGH!!! The timing! Yes, I know the bad timing aspect of chronic illness is a fact of life, but that doesn't make this suck any less. I do hope you'll at least manage to stay out of the hospital and wage your war against the infection in the setting of your own house.

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britta said...

I feel your college has a wonderful support service, but the teachers are the one's who suck it up and pretty much tell me that I need to get things done right away, because you never know when things may change.....duh, I could have a flare and still not get things done! Ugh!

Sending happy thoughts as I ice my thighs...cute huh!?

MJ said...

That really is disappointing that you couldn't get to the symposium. "Ironic" doesn't even seem like a strong enough word for it. It does make me incredibly happy to see at least one university starting to address the needs of students with invisible illnesses!

I'm very much looking forward to your book, BTW - I have it preordered on so I won't have to remember to order it when it comes out.

Hope that you manage to stay out of the hospital and can recuperate in your own home.


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