Tuesday, September 29, 2009

Just Make It Work

One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you're not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I've collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.


britta said...

Today was an example of this post in multiple ways. First off, I don't know why, but I have been beyond exhausted...I sleep as much as possible and when I am awake, I am still tired. I nodded off probably over a hundred times during my classes today. It was where the minute I would close my eyes, I would start dreaming instantly. Somehow I managed to get through all my classes...not with any notes, but I was there to listen.

Then as I was talking to one of my professors about my Lyme Disease. I could actually see the sadness and concern in his eyes about my well being and my ability to make it to class. I told him....even if I get really sick from the treatment, it is my goal to make it to class.

Kairol Rosenthal said...

Hi Laurie,

On September 10, Tara-Parker Pope wrote on the Well Blog a post about me and my whole perspective on does illness make you strong? (http://tinyurl.com/m9b3nb)

If you are looking for any more motivation, today or in the future, read the 150 comments that people left concurring with you, with me, with anyone who gets what it means to live with chronic illness. It isn't a lifestyle choice but something we just have to mold our lives around if we want to live.

Are you strong Laurie? My guess is that is best answered by you, not us. But what I can tell you is that I think you are extremely intelligent, motivated, and I am grateful that you continue to write about issues that nobody else is writing about. Keep it coming!


blog http://everythingchangesbook.com/

Brittney said...

Great post, and it fits my life perfectly. I somehow manage to make things work when I don't think they will. Right now I'm contending with a couple massive tests coming up along with dealing with a new diagnosis (always on my mind becuase I don't quite understand what it all means) and plain feeling under the weather. Somehow I always manage to make my studying time pay off, even if I only do half as much as my peers.

Mary said...

Awesome post. I feel the same in so many ways - I am doing what I can to keep going, often trying to choose the lesser evil. A lot of the time, it's just that the alternative is worse - if I don't get things done, I lose my job, if I lose my job, I may lose my house, and so on. Hence I have to go to work even though I may be feeling awful.

The flip side of people who say that you are "strong", though, are the people who say that you need to rest, take a long break from work, take it easy, whatever. They are equally irritating, because really it's still the same thing - I am doing what I can to keep going, and it has little to do with being "overworked" or "strong", and everything to do with keeping my life stable.

Young Wife said...

It's so funny. Lots of women in my family say, "You just do what you have to," but it was always in relation to child rearing. I never thought about it in terms of chronic illness. Thanks for the pep talk!

Ilana said...

It's so true that deadlines and having no choice about completing something show me my true inner potential. I just seem unable to create that out of will alone! I need external pushing... I should hire my own personal boss. :) I'm in a good mood right now because I discovered the ChiliPad. It's a mattress pad that lets you cool down (or heat up) your bed, any temperature between 46 and 118 degrees. Other than soothing inflammation, the best thing about is is it brings the pain threshold below what will wake me up - so I'm able to get more sleep at night, which in turn reduces my pain (I have RA).

Anonymous said...

Totally can relate. LIfe does not stop just because I am sick. Things have to be done, dedlines have to met. I think I was a strong person before I got sick but now it is just put to the test on a more regular basis. Also I think I am too stubborn to let an illness get me down!

Helen said...

Thanks for this - it really resonated, as I imagine it does with so many others with chronic illness.

Sometimes I think we even surprise ourselves with what we're capable of dealing with just because we have to "make it work".

Liz said...

"It is amazing what you can do when you have no choice" is exactly right. The alternatives are unacceptable so we figure out a way, at least for as long as we can.

Benia Zouras said...

This is SO on the nose! Coworkers who know I have Fibromyalgia hear me tell them how I'm having a bad day, then immediately try to help by saying "you should take a sick day". No, if HE had felt this way, HE would take a sick day because most days he feels fine. Most days I feel shitty. I'm out of sick days anyhow.

Thanks for writing this.

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