Tuesday, April 23, 2013

A Matter of Perspective

The Best I Ever Had
Image by Thomas Hawke via Flickr

For the first time ever, I accompanied Scott & Ellie to an out-of-town skate meet last weekend. It was held in Auburn, roughly a three-hour drive from Portland.

I didn't decide that I was going until the night before. And even then, I was really torn about whether it was a good idea for my health.

Sometimes I feel like I walk a tightrope between desperately wanting to avoid a flare or major setback and wanting to participate in my family's (and especially my daughter's) life as much as possible no matter the cost.

So we left home at 7 a.m. on Friday but made a detour to stop past Scott's office and pick something up that ended up adding an hour to our journey thanks to morning rush hour.

And here's how my schedule went for the weekend, as best I remember:

11:30a-1p: Arrive Auburn, brief stop at skate rink then lunch and checking into our room.
1-6p: Nap while Scott & Ellie went to practice at the rink.
7p: Picked up at hotel to go to dinner with a bunch of skaters.
9p: Bed.

7a: Scott and Ellie head to the rink. I said goodbye and went back to sleep until around 11a.
Noon: Scott & Ellie come back and have a short swim in the hotel pool.
1p: Lunch
2p: We take Ellie to the hotel where the girls are doing hair and makeup for the junior precision team's event Saturday night
3:30p: Back to our hotel because I'm exhausted and the noise/activity level at the other hotel's lobby with 14 girls and at least one parent apiece is exhausting to be around.
4-5p: Nap
5:15: Doors open at the rink and we're right there.
5:30: Opening Ceremonies for the meet (despite competition having started at 6a).
6p: Junior precision teams (ours and another club's) skate. Then we watch the Tiny Tots skate while waiting for the award ceremony. Our girls win first place!
8p: Dinner. Finally!
9:30p: Bed

4:30a: Alarm goes off and I get up to do Ellie's hair and makeup for her 6a figures event. Scott also has two figures events starting at 6a.
5:15a: Free (and quick!) breakfast in the hotel lobby. Rink opens at 5:30a and skaters need to hurry.
5:30a: Scott and Ellie leave for the rink. I head back to bed.
10a: Scott calls and asks if I want to be picked up to be there for Ellie's dance event at 10:45a. I regretfully decline and go back to sleep for another hour.
11a: I get up, get dressed and start packing up all our gear because checkout is at noon. I'm expecting Scott and Ellie back any moment. But they aren't, so I go ahead and check out at noon and wait in the lobby to be picked up with our gear.
1p: Scott picks me up in a grumpy mood because they still hadn't posted results from Ellie's event or had the award ceremony due to computer issues and he's afraid he'll miss it.
1:30p: There's an award ceremony but we don't hear them call Ellie's event. All of a sudden everyone's asking where she is and it turns out she won second place. I chase her down and hurry her onto the rink to get her medal.
1:40p: Lunch!
3-5:30p: Hanging around rink until Scott's dance event at 5:30. Most of the younger girls are melting down because they've been at the rink since 6a and are exhausted.
6p: Ellie and I decide to eat rink food for dinner. Scott can't because he's still in his dance tux and can't risk mess while waiting for the award ceremony. He's won second place!
7p: Hit the road for home, with a quick stop at a McDonald's so Scott can eat something.
10:30p: Home at last!

Do you get as tired as I do just from reading that? And keep in mind that I slept through the bulk of the weekend!

On Sunday, I came to the conclusion that my presence at the skate meet was pointless and actually an annoyance because of the extra trips between hotel and rink that Scott had to make in order to accommodate my needs. And I'd missed three of the five events my family skated, as well as sometimes pulled them away from what they would have chosen to be doing if I weren't there. So what was the point?

Scott, however, came to the opposite conclusion. Without my having told him how I was feeling about the trip, he thanked me for coming along and said it was really good to have me there.

Clearly, it's a matter of perspective. And that's giving me some food for thought.

Thursday, April 11, 2013

Book Review: In The Kingdom of the Sick by Laurie Edwards

I got a lot of comments when I carried around Laurie Edward's new book, In the Kingdom of the Sick: A Social History of Chronic Illness In America to my various medical appointments earlier this month. Interesting comments.

"So does that book explain why there are so many people with psychosomatic illnesses these days?" my dentist asked. "There didn't used to be so many people who complain about being tired and having aches and pains all the time, people who say they can't work or lead normal lives."

And there were other, similar, comments from other people who ought to know better too. (There were also questions and comments from open minded people too. But there were more of the former than I would have anticipated considering the places I was reading the book.)


Laurie, a longtime blogger in the chronic illness community at A Chronic Dose, did a lot of research for this book, as evidenced by the ten pages of (single-spaced, small print!) bibliography as well as the informationally dense text. The book has a slightly academic feel to it, especially in the early chapters. But it was so fascinating at the same time that I was never tempted to abandon it. I did have to read it in chunks because it gave me too much to think about and want to respond to. My copy has a thick, pink fringe to it from dozens of Post-It flags I littered the pages with every time I came across something that made me say, "Huh!" or "Wow!" or "Grrrr". (The last was in the many cases reading about historical and current treatment of female patients as unreliable sources of information about symptoms. In fact, I wrote an entire blog post venting about it that I need to re-read and consider actually posting next week. It was pretty much a rant though, so I'm not sure how relevant it is to my readers.)

As in her first book, Life Disrupted!, Laurie interspersed In the Kingdom of the Sick with stories from real people living with chronic illness or treating it, which helps keep the book more accessible to the average reader. I also really appreciate the way she shares bits of her own experiences.

Below are my somewhat random musings. I swear, I think I could write a book length review/reaction to Laurie's book, but I'll try not to. The summary is this is well written, fascinating book and should be a must-read for anyone who has a chronic illness or has a close friend or family member who does. (And that, essentially, is pretty much everyone, whether they know it or not.)

**** The title comes from one of my favorite chronic illness quotations from Susan Sontag: "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdome of the well and the kingdom of the sick. Although we prefer to only use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

**** "We do not like being reminded that there are still limits to modern medicine, and that named conditions exist that may not kill us but will not go away. But if we add to this scenario those illnesses that we can't name, ... conditions we can't put under our high-ower microscopes or see on advanced imaging tests, then the fear -- and often distaste -- grows. Perhaps if the symptoms can be explained away by claiming the patient is just lazy, or is not making appropriate lifestayle changes, then blame can replace the other niggling emotion: Maybe if it can happen to him or her, it could happen to me." -- page 11

I think the above quote from Laurie's book was behind my dentist's comments. Although she very carefully said she wasn't referring to people like me with "legitimate" health problems, she was critical of her sister's claims to health problems. She believed that if her sister would just eat healthier foods, exercise, stop feeling sorry for herself and be less lazy, the sister would be fine.

While I know there are undoubtedly some people out there scamming for disability payments as depicted on the Showtime series Shameless, I have yet to meet anyone (online or IRL) who wouldn't greatly prefer to be healthy and able to work or take care of their children.

**** I love reading historical fiction, but I never knew until reading Laurie's book (p.17) that the practice of blood-letting stemmed from the belief that since women menstruated monthly and (in ancient Greece & Rome) apparently had fewer illnesses that it was a good way to rid the body of disease. Fascinating.

**** Laurie writes (p.22) that chronic illness didn't become prominent to society until after the advent of vaccines during the first half of the 20th century. Until then, enough people died or were incapacitated by infectious diseases such as polio, measles and smallpox that there wasn't much awareness of those illnesses that don't kill. Fascinating factoid: self-reported illnesses rose by 150 percent from 1930 to 1980, which was, Laurie wrote, "a clear indication that a population that lived longer wasn't necessarily feeling better."

**** Laurie interviewed a large number of patients, and even when their illnesses and symptoms were far, far different than my own, I still felt like our shared experiences in coping with chronic illness were far more similar than different. And that's an important thing to realize as health care in the U.S. continues to change. Laurie writes about how initially HIV/AIDS patients used to make a point of differentiating between the people who caught it due to their own choices and those who didn't, but once those two groups united to lobby hard for more attention and research, huge strides were made and HIV is (generally) no longer the death sentence that it used to be. I wonder what would happen if the chronic illness community worked together to lobby for our entire group instead of splintering off by diagnosis.

**** I finally learned the back story for e-Patient Dave! I've been following him on Twitter for years and seeing him mentioned in all kinds of forums in the chronic illness online community but I never knew how he became famous (at least in those circles). Turns out, he was diagnosed in 2007 with late-stage kidney cancer, a diagnosis that carries a median survival rate of just 24 weeks. He used the Internet to do research and connect with other patients, and brought his doctor reams of research. They came up with a plan, he participated in a clinical trial and overcame virtually insurmountable odds to survive. (He has also written a book, which I plan to check out: Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).

**** It's somewhat disconcerting to be reading along and suddenly find your own name. :) Laurie interviewed me for her book, and I was pretty sure I didn't end up on the virtual editing room floor, but I never knew when or where my name would pop up. I feared I had rambled nonsensically in answering her questions via email, but she treated me generously and didn't let me look like a fool. Thanks!

**** Reading the chapter titled A Slight Hysterical Tendancy made me angry. And also triggered memories of times that I hadn't even realized how patronizing my doctors were being. And those date back to well before my current health issues. But that's a rant post for another day. In fact, it's already mostly written.

**** I've long been a fan of Duncan Cross, and reading his quotes in Laurie's books just confirmed my opinion of him. He's probably responsible for the largest percentage of my little pink Post-It flags. One of my favorites, which harkens back again to my dentist's disturbing comments about her sister and others: "There is a sizeable minority in this country which believes either explicitly or subconsciously that people deserve what they get. If you're sick, it must be because you did something awful or are an awful person .... Obviously, relatively few people who have chronic illnesses did anything to create those diseases, and even those who did don't deserve the suffering that results."

 **** I was essentially cheering aloud when I read about people who dislike the pressure to keep one's chin up all the time and exude positiveness. I know I've blogged about my resentment of that pressure, but I can't seem to dig it out of the archives right now. Laurie quoted someone who called it the "tyranny of cheerfulness." Another interviewee talked about how people imagine that there's a finish line that people with cancer can cross to win the race and become survivors, thereby "perpetuat[ing]  the stereotype of the valiant, effervescent cancer survivor." (p.101) What does that then say about those who "lose the battle" or face recurrences?

Laurie then writes, "The issues apply to chronic illness in powerful ways. For one, there is obviously no finish line, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so. Without that finish line that denotes survivorship, there is not the same level of cultural awareness of our diseases, no backdrop of success with which outsiders can judge our journey. Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are."


**** As I mentioned earlier, I love historical novels. So I was fascinated when Laurie drew a line connecting chronic fatigue syndrome and fibromyalgia to other mysterious illnesses that have occurred throughout history with little or no understanding. And usually written off as some sort of somatic illness, so I guess some things rarely change. :P

Ok, if I keep going on, you might think you don't need to read this book because I've told you everything. Trust me, you do need to read it. In fact, I think reading it several times is beneficial because you can't possibly absorb all the information with just one read of it.

Full Disclosure: I received an advance copy of the book as an interviewee. I received no compensation, either for sharing my story/opinions with Laurie or for doing this book review. My opinions are my own, although I think anyone with any sense at all would agree with me that this is an excellent  book. :-)