Saturday, December 20, 2008

How Do You Measure A Year?

“525,600 minutes
moments so dear.
525,600 minutes
How do you measure, measure a year?
In daylights, in sunsets, in midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In 525,600 minutes
How do you measure
a year in the life?”

When you’re chronically ill, time can play tricks on you. I was thinking yesterday about how good I’ve been feeling and how long it has been since my last rheum appointment, only to realize that it was only a month ago to the day of my last visit. Not so long ago after all. Especially since I’ve been known to plateau in the feeling good department after about a month.

Being chronically ill also makes you mark milestones differently. As I prepared to celebrate Thanksgiving with my family, I couldn’t help but think back to Thanksgiving 2007. I had my CT scan the night I was going home for Thanksgiving.

And now, as I prepare to head home for the holidays, I think back to last year, and my impending (first) rheum appointment at the beginning of January, and all of the unknowns that lay ahead of me at that point in time.

And maybe that’s why I’m not really in the holiday spirit this year. Lately, everything feels like too much work. But maybe it’s more about the fact that things are different now. The moments in my life that signify the holidays are no longer things associated with the holidays, but things associated with illness.

I remember in those “first months,” especially October 2007 through January 2008, standing in the shower (most mornings, when I was feeling well enough), hugging myself and crying. Like a little girl who lost her favorite doll, what seems like the most important thing in the world, I was worried that I was losing… my life.

Physically and emotionally wounded and in pain, I would stand there, waiting for a sign that things would get better or worse. Either way, I wanted and needed to know.

Looking back now, what seemed like the worst then, undoubtedly wasn’t and still isn’t the worst that life has to offer me. But I think about everything that I’ve been through in the past year, with all of the ups and downs, all of the back and forth, all of this:

30+ doctors appointments

40 prescriptions

2,200+ pills

$14,100+ of tests, and blood work

(Thank goodness for insurance, although that figure doesn’t include appointment and prescription co-pays!)

(If this were a credit card commercial, I think the word “priceless” would come after all those numbers. But priceless what?)

(Yes, I am this crazy and anal that I’ve kept track of all of this stuff to the point that these numbers were practically at my fingertips)

And it’s honestly hard for me to believe that all of this is real and happening to me.

I guess my penchant for keeping all of the prescription bottles is that I want to have something to show for the trials and tribulations of the last year and a half. Aside from the emotional scars, there has to be something tangible to take away from this.

I do think that this has been a time of immense personal growth, but it seems like a big price to pay for wisdom. I guess that’s life.

“525,600 minutes-
How do you measure the life
of a woman or a man?
In truth that she learned,
or in times that he cried.
In bridges he burned,
or the way that she died”

So, how do you measure a year?

Larson, Jonathan. “Seasons of Love.” Rent. Warner Brothers Records, 2005.


  1. XOXO Leslie. Thank you for sharing this post.

  2. I've been having similar reflections. For me, it was a year ago that I first started feeling the grinding fatigue. It was a few months later that the pain showed up in full force. And it's only now that I'm really getting a diagnosis and really getting hope. Next year will be better.

  3. I just realized that it's been 10 years since I first developed a pain syndrome. That frightens me. But it also gives a sense of my own strength. So I'm measuring this decade by the losses, the meds, and the love.

    Thanks for this post - very thought provoking.