Log in

No account? Create an account
21 May 2012 @ 10:49 am
surviving Clarion with a chronic illness  
I've been asked about how I survived Clarion while ill, and figured it might be of interest to more than just one or two people, so figured a post might be better than email. Also, that maybe other people with CIs could chime in? About Clarion or, even better, about other workshops? Given my limited experience this is going to be a very Clarion-centric post...

(Note: & feel free to email me at shweta at shwetanarayan dot org if you'd rather not talk publically about health stuff but have questions.)

ETA2: glorioushubris has some important advice in comments for anyone who finds themselves in the situation of becoming life-alteringly ill while at Clarion.

Okay so I see this broken down into a few questions.

1) How well do I have to be to even try?

I think if you're well enough to contemplate 6 weeks of full days - with multiple stories to read every day - without melting down, then I think you're well enough to get something worthwhile out of Clarion. If you're at risk of meltdown, then it depends on why; is it fear of letting other people down? Forget them. Is it worry that you won't do "enough" there? Well, sure, those of us with CIs may not be able to do as much as our healthy classmates, but that doesn't have to stop us from doing what we can & enjoying it & getting a lot out of it.

But it's true that some of us aren't well enough, right. I certainly am not at this point. So: if you're melting down because the entire concept is horrific and exhausts you even to think about it and how can you possibly do this, then... it might be wise to listen to your body :/

2) How much can I expect to manage?

And that's going to depend on the details of your CI, of course. But, expect to make compromises. This isn't defeatism; Clarion at least is set up to be gruelling even for healthy people, so trying to always keep up in every possible way can be really bad for people with CIs, and lead to actually managing less. Better to guard your health and do what you can, and let the rest slide. In my case, I:
- did not make it to every day of workshopping.
- only wrote two stories plus one assigned-story while at Clarion - nowhere near one a week.
- did not do as much social stuff with classmates as I'd have liked to.

And you know what, that's okay. I did as much as I could.

3) How should I prioritize?

Since we're expecting to make compromises, well, which ones to make? Here's the priority list as I see it, for things to manage, from the top down:

- Read and critique your classmates' stories. This is where you learn the most, by thinking critically about pretty good stories that could still become better. If at all possible, read and crit every single story at Clarion. And write your crits down (even if that's not class policy) so that, if you're unwell during the crit itself, you've still participated.
- Spend time with classmates. You will never again get a stretch of time to just talk about the writing and what you want to do with it & what they want to do with it. It matters. As much as the craft itself, Clarion helps you create a narrative of yourself as a writer.
And water-gun fights are good too. Just sayin' XD
- Spend social time with instructors. This includes communal meals & evening activities; you may not manage all of these, but do try to manage some social time just talking to each instructor.
- Write write write. Do write while at Clarion, it's a really important experience. But. Frankly I am amazed even at the healthy people who manage a story a week, and it's not shameful not to when dealing with CIs on top of everything else. And you WILL have writing time after Clarion too!
- Make it to the workshop. Obviously yes you want to do this as often as possible; the actual back and forth of a workshop crit is an amazing learning experience; but I don't see a 6-week stretch with NO bad days, do you? If you need a day of rest to recuperate & be able to manage everything else, take it. And don't guilt yourself over it. This is where having written down crits comes in handy, I found - means I didn't feel as guilty about not being there on my sick days.
- Read read read. It's really good to have read something by each of your instructors? But I think the best time for that is BEFORE Clarion not during. I took along a stack of books and barely cracked them while I was there. Far too much else to do.
- General evening activities. I tried to make it to every one, and I think that was a mistake. I could have done more if I'd been willing to say no to the ones that weren't my cuppa. But OTOH this is time with classmates, so *handtip*
- email, livejournal, etc. Forget these for 6 weeks. IT WILL BE OKAY I PROMISE. Also you will thereby avoid horrible internet messes that will haunt you forever after; posting anything personal/private while under the influence of Clarion is not a great idea.

4) Other things to keep in mind?

Make sure you know who to go to/where to go in an emergency. If your CI is complicated, it might be a good idea to write out the details in case you're not well enough to explain them to the campus medical folks? IDK, I had elsmi right there to help if I had problems, because I was local, but I'm always struck by how difficult it is to get new doctors up to speed, so.

If you have particular dietary requirements, make sure you have some alternative-snackies in case the cafeteria screws up. Because I'm afraid they do.

Monitor your energy level! It's really easy to get distracted at Clarion, so much is happening, so you might want to pick specific times to do a self-check.

Have all your meds and some emergency-spares to hand. I don't actually have to tell anyone with a CI that, do I, but just to make the list complete.

Ideally there will be a classmate you're comfortable poking to help out when you're not well - to get you food, or to tell other people you're not around today, or just to be the clear head when yours is all full of fuzz. And in general, there will be people who are happy to do this. Just figure out their & your comfort levels while you're doing relatively well :)

ETA: kate_schaefer reminded me! If your illness comes with impaired immune system or extra-bad reactions to bugs, *do* keep hand sanitizer with you, and don't feel bad about using it plenty. In largish groups especially, it's the best way I know to not pick up on every bug anyone has encountered.

I think that's it. Additions, alterations, questions?
Current Location: still in bed
Dr. Kvetchrose_lemberg on May 21st, 2012 12:28 pm (UTC)
I have nothing to add, but I have *hugs*

shweta_narayanshweta_narayan on May 21st, 2012 02:17 pm (UTC)
brainwane.dreamwidth.orgbrainwane.dreamwidth.org on May 21st, 2012 01:54 pm (UTC)
Thank you for writing and sharing this!
shweta_narayanshweta_narayan on May 21st, 2012 02:16 pm (UTC)
also hi!
Julie Andrewsjulieandrews on May 21st, 2012 02:03 pm (UTC)
Is this in response to the Wiscon panel? If not, I hope some of the panelists have read this!
shweta_narayanshweta_narayan on May 21st, 2012 02:16 pm (UTC)
um there's a panel? One of the 2012 Clarionites asked, is all I know...
Julie Andrewsjulieandrews on May 21st, 2012 02:58 pm (UTC)
Oh. Yup. Let me dig up the description.

Intersectionality in the Writing Workshop Environment

Intensive writing workshops can be incredible life-changing experiences. But what's it like to attend them as a writer of color, a woman, a trans person, a queer person? What if you have disabilities or are lacking in financial means? Let's discuss which workshops are the most accepting (and to whom) and uncover strategies to help you get the best out of the experience. The focus will be on in-person workshops, but online workshops may also be discussed.

I suggested this panel, though it's been revised from my original proposal.

Panelists are Keffy Kehrli, Vylar Kaftan, and someone I don't know, Ibi Zoboi.
shweta_narayanshweta_narayan on May 21st, 2012 03:13 pm (UTC)
Oh huh! Though hey, I guess Keffy & Vylar will both see this go by on their flists, anyway...
Kate Schaeferkate_schaefer on May 21st, 2012 02:18 pm (UTC)
Shweta, this is excellent, particularly the prioritization list. It's appropriate advice for everyone attending Clarion or Clarion West, even those not managing a chronic illness.

I was managing an impaired immune system at CW in 1992; I didn't yet know the extent of the allergies underlying the problem. I coped by taking a nap every single afternoon before reading the next day's stories.

The weekends (at Clarion West, at any rate) are a great opportunity to rest and catch up.
shweta_narayanshweta_narayan on May 21st, 2012 02:20 pm (UTC)
Ohhhh you reminded me of something I meant to put in the list - immune system issues. Thankyou! :)

...weekends are mostly when I got reading in rather than rest, I must admit XD
Annetxanne on May 21st, 2012 02:55 pm (UTC)
This is useful for any kind of traveling with a CI, I think. I'm currently planning a school trip to Europe, and there's at least one asthmatic who's interested in going. Plus I'm sure there are some invisible or undiagnosed issues. May I adapt this post for inclusion in the trip materials? If so, how should I credit it?
shweta_narayanshweta_narayan on May 21st, 2012 03:11 pm (UTC)
Oh! Absolutely, and um I have no clue on crediting, name & url I guess? :)

I would add, for an asthmatic in Europe - especially one with any cigarette smoke sensitivity - a microfiber scarf or turtlefur is a lifesaver. Can get that over your nose & mouth in 2 seconds and it filters out all the awful stuff. I don't leave the house without one here, and it's saved me from multiple major attacks already.

E. J.glorioushubris on May 22nd, 2012 01:40 am (UTC)
Shweta, this is a very good post. I agree with pretty much all of it. I also didn't produce a story a week, and I missed a day of workshop. I probably should have missed more than I did. I'll drop my story in here, as I had the curious experience of attending Clarion with a chronic illness without knowing ahead of time that was what I was doing. I went to Clarion with what I thought was a taken-care-of gastrointestinal parasite that turned out to actually be an undiagnosed case of Crohn's disease. My condition got extremely severe while I was at Clarion. Over the course of the six weeks I lost 18 pounds, and I left the workshop to spend the next ten months in a sickbed.

For anyone else who finds themselves in the situation of becoming life-alteringly ill while at Clarion, a couple of thoughts:

(1) If you are at Clarion San Diego, know that I found the UC health system, circa 2008, to be unimpressive. I took the third week off from writing to try and get my health issues attended to, and ended up with nothing to show for it but some invasive procedures and assurance that it was definitely NOT Crohn's disease. Instead, multiple doctors opined that I probably had AIDS. After I submitted to testing, and the test came back negative, I was told that it was probably a false negative. As it happens, I was in a long term monogamous relationship with an HIV researcher at the time, so I was fairly certain from the outset that the AIDS diagnosis was wrong, but it did nothing for my peace of mind to spend a week getting "AIDS is not a death sentence" speeches from internists. I gave up on the UC health system after that. Naturally, your milage may vary, but that was my experience.

(2) Motivated by the knowledge that you can only attend Clarion once, I tried to hide how sick I had gotten, for fear that I would be pressured to go home. In retrospect, that was a mistake. I should have gone home early. Clarion is an amazing experience, and each day feels precious and irreplaceable. But, in the long run, health is more important, and I wish I had gone home two weeks early and perhaps not lost the next ten months of my life to drugs and pain. Again, anyone who gets dramatically ill at Clarion is going to have to balance their own priorities, but I decided to tough it out, and though I still view my Clarion experiences as precious, I regret the decision. Please make taking care of yourself your first priority.
shweta_narayan: authorpic1shweta_narayan on May 22nd, 2012 11:23 am (UTC)
OMG I had no idea you were so ill. Many good thoughts your way, and thank you for sharing this. I'll add a link up top.

and yeah, while UCSD technically has some of the best health care available, it's really unlikely anyone at Clarion can get access to it, and my opinion of the main campus medical facility is low.
Steffirecat on May 22nd, 2012 06:37 pm (UTC)
My CIs are one reason I wrote off the idea of ever attending Clarion (my thoughts, after asking some people about it: "it's only for healthy, energetic, outgoing people"). Your post reminds me how much I participate in my own marginalization.
elizaeffect on May 24th, 2012 01:21 am (UTC)
Oh, thank you, thank you, I finally got around to reading LJ this week after being sick all weekend, so this post is extra super amazing apropos.

The priorities list is awesome (I make these all the time!), but I think it's also just the assurance that this can be done, that all the dire warnings about how even the healthy people will die of sleep deprivation and BOOT CAMP BOOT CAMP BOOT CAMP do not have to be the one way to do this. Had my first "I'M GONNA DIE" freakout last week and am expecting a few more in the next month, but you did it, and you're great, so obviously it is possible.

:) :) :)
swan_tower on May 24th, 2012 05:02 am (UTC)
This is salutary reading even for me, a person without a chronic illness: I'm very prone to assuming I must do EVERYTHING ABSOLUTELY EVERYTHING in any situation of this kind (where it's a short-term, opportunity-of-a-lifetime experience), so I've been known to run myself into the ground. This is a wonderfully sane reminder that it's okay to back off.
Adam Israel: No iconstonetable on June 3rd, 2012 01:31 am (UTC)
I went through Clarion (2010) with a fairly compromised auto-immune system after just having been diagnosed with Celiac disease. Severe enough that, in hindsight, I probably shouldn't have gone but did anyways and I'm glad I did. I only wrote three stories and, like Kate, had to nap every afternoon before I could read the next days stories. I still made it a worthwhile experience that transformed me as a person and a writer.

As Shweta says, it is manageable to do with prioritization and communication. Let the coordinator know about your condition, so it's passed on to the instructors, and share it with your classmates during introductions. They are your allies and will look out for you.

If not for them (and a few local volunteers who knew of my condition, Shweta included), I wouldn't have adjusted nearly as well as I did. The key thing I found was to know or find my limits and to not be afraid to say no or do differently than your classmates.

I can't speak to the medical facilities on the UCSD campus, but I will say that the cafeteria my year was more miss than hit. If you have food allergies, you can arrange to speak to someone in food services but it's no guarantee that anything will happen (at least in my experience). Our rooms had a shared space w/a kitchen, which is where I usually ended up preparing at least some of my own meals when nothing else was available (or I got tired of the salad bar).