Sunday, April 20, 2008

what Aud said to Kick about Julia

From: Linda (

I have sent you several "Ooos" and Ahhs" since I began reading Always. Now that I have finished it, and reread it, I would like to offer a comment or two of hopefully some substance--and I have a question!

First, thank you for the way you presented MS. I am a Physical Rehabilitation Counselor and work with individuals who have some of life's "biggy" challenges come down the pike and land at their doorstep. I have learned that life can turn on a dime and NO ONE has a pass on this fact.

I have worked with two women in particular who were diagnosed almost within the same month and year with MS, with very similiar demographics, location of lesions,and choice of treatment options. One quickly slid down the slippery slope and the other managed to continue meeting the day with every intention not to be bested by MS.

My take on why so dissimiliar a response? One had and held on to a support system, asked for help when needed, cursed at the disease,but not her life. The other said to me very clearly, "Don't give me all that hope crap...this should not have happened to me...I didn't do anything to deserve this." I have no more and a lot more to add to that.

Secondly, thank you for challenging my brain. I am 59 years old and still never tire of discovering there is something I don't know!Imagine that!

I now have looked up phyllotactic ratios, leaf whorls and patterns, "tall poppy syndrome", and learned a Japanese proverb "The nail that sticks out gets hammered down." Jante's Law. I have looked up microns and ergs. I also loved the reference to distant lights as "campfires above Troy"--I read all of Stephen Pressfield's novels.

And I am also VERY afraid of heights. All that jumping and falling stuff. Yikes! I had a visceral response to the climbing of the scaffolding on the tiny steep steps. (I REALLY visualize what I read)

Now, for my question! Why did Aud not tell Kick about Julia? (BTW I do so love the evolving Aud.)

Thank you for writing such a wonderful,wonderful book. You are now on my list of people to meet before I go the way of the cherry tree.

Well, if you're in Seattle, I'm doing a reading at Richard Hugo House on Tuesday, May 6th, along with Corrina Wycoff, another Lambda Literary Award finalist. Lots more details of all my appearances (two in Los Angeles, one in Seattle) are here.

I'll address your question first. I think Aud has told Kick about Julia; we just weren't privy to that conversation. I know roughly how it would have gone (Kick would have been sympathetic but pissed off: internally rolling her eyes at the thought of maybe competing with a dead woman who, of course, being dead, would be perfect), but we didn't need it so I didn't write it.

As to your take on the progression of MS depending on attitude: I have decidedly mixed feelings. On the one hand, I find the notion of us being responsible for our own illness rather disturbing. It has a faint whiff of blame-the-victim. (No, I don't believe that's what you're saying. But it's a very thin line.) On the other hand, I know how emotion affects our bodies--and attitude has a lot to do with our emotions. Hope can be very useful; it keeps us going, keeps depression (which really is a killer) away. Hope can also be very difficult and sometimes absolutely unhelpful. When one has a terminal illness, for example, false hope can actively impede dealing with the situation. I've watched my family go through this a couple of times. Denial sucks.

For people with MS, the hope/realism continuum is very, very tricky, partly because it's such a bloody unpredictable disease. I spend a lot of time balancing hope and pragmatism: no, I'll never be cured; no, I'll never run again, probably never walk properly again; yes, life is good; yes, it's possible I'll stop getting worse. (And I now think it's so much more possible than I used to.) Frankly I really hate it when people say: cheer up, a cure is just around the corner! No, it isn't. The medical profession doesn't even agree on the cause/s and etiology/ies of MS. It's certainly a long, long way from a cure.

I'm absolutely in agreement with you on one thing: no one gets a pass on the big stuff in life. As a woman I know often says: we're all only temporarily able-bodied. And shit surely has a way of happening. There again, every day is a new day, with Kelley and the cat, a hot cup of tea, a good book, a visit to the park, dinner with friends. As Kick would no doubt tell Aud: it doesn't have to be perfect.

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