Education, Disrupted: An Update

This past May I wrote about the challenges college students with chronic illness face in terms of achieving their goals and staying enrolled. I also wrote about the great work the Chronic Illness Initiative at DePaul University is doing to help students overcome these challenges.

As an update to that post, I’m happy to pass along this news story about Michelle’s Law, a bill passed recently that, according to the Boston Globe “would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance.”

It’s sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That’s why this legislation is exciting, promising, and…logical.

Who would have guessed it?

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.

The Evolution of the Mental Health Day

It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…

…And then I plunked down at my computer and dove into work, excited that I had such an early start and that a whole day to catch up on projects and hopefully get ahead on others stretched before me.

Oh, how times have changed.

My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.

Considering how many weeks of school I missed every single year due to my illnesses, not everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.

If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.

Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.

And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.

Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.

True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.

***
Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.

September Lessons

I’ve always loved fall. Some of my reasons are more typical ones: I love the vibrant colors of the leaves, the smell of burning leaves, the cool days where I can wear a sweater and not be too hot or too cold, the abundance of root-vegetable inspired dishes. I love the way the nutmeg and cinnamon-scented candles I use to replace the flowery smells of summer fill my living room, and the way the smoky aroma of grilled meat at football tailgates lingers in the air.

Plus, I am huge dork. Fall has always been synonymous with “Back to School,” and for dorks like me, this is a big event. When I was little, I would start planning my back to school shopping in July—not the clothes, mind you, because I wore a uniform from first grade through high school. No, much to my brothers’ horror, I was focused on such weighty issues as Trapper Keeper versus regular folders, erasable pen versus regular pens, and whether I wanted standard or college-rule lined paper.

And summer reading? I’d have finished it all within the first couple of weeks of summer and would count on the diligent notes I’d taken to refresh my memory in late August.

Obviously the older I got the less critical things like Trapper Keepers and erasable pens became, but fall (and September in particular) continue to have meaning for me, and my reasons for this are less typical.

For starters, the simple act of breathing is easier. True, my temperamental lungs never handle the change in seasons too well, but once we’re firmly entrenched in fall weather and I can say goodbye to the humidity that suffocates me, I am happy. I don’t mind the infections as much if in between them I can actually inhale and exhale without feeling like I will never get enough soupy air.

But beyond pragmatic changes like the weather and going back to school, for as long as I can remember fall has also been synonymous with this thought: “Maybe this year will be my year.” The clean slate I’ve been waiting for, the fresh start every student gets, the year no major calamities occur.

When I was little, “my year” would have looked something like this: No surgeries to accompany almost every holiday and long weekend. No weeks’ long absences. No streams of blood gushing from my ears, ruining my pillowcases and making me hesitant to sleepover friends’ houses. No missing birthday parties and ballet recitals and skating shows because I was too sick. No broken bones and casts with classmates’ signatures, no missing the bus because I needed another nebulizer treatment. No sitting on the sidelines at Field Day every May, watching everyone else run and compete.

In college, “my year” would have looked something like this: No missing weeks of classes each semester due to hospitalizations. No needing my friends to take me to the hospital or visit me during my longer stays. No needing to ask to borrow notes or make up more essays, no needing to conference call the campus newspaper from my hospital bed, oxygen mask and all. No needing to worry my parents with late night calls from the ICU, no getting worse and worse despite the more medication I took. No more feeling like all I did was put my life on hold for illness, and no more feeling like however much I gave up for illness, it would never be enough to make me feel better.

It was a vicious cycle of disappointment I set up for myself. Obviously I never got a year like that, and the more I wished for one and counted on that fresh, clean slate to feel normal, the harder it was when it never happened.

I still get excited for September, and I still get anxious to go back to school. I enjoy my writing students and their work, and I like the structure and routine of semesters. But I no longer count on each September to herald in “my year” and I am much happier because of that.

Don’t get me wrong, it is not that I have become resigned to crises and medical issues, or that I have given up hope that an uncomplicated medical life exists somewhere out there, and I am happy to say that the crises aren’t as pronounced as they used to be. But I’ve stopped setting up expectations that are counterproductive. It’s not about starting over each September with a clean slate or getting back to normal (whatever that normal is); it is about accepting that where I am, disruptions and all, is what is important.