Sunday, May 23, 2010


Well, what a week it's been. On Thursday and Friday, I finally hit the wall of myself. I spent about 48 hours in the emotional breakdown lane as I finally took stock of what I've lost.

Most of my arthritis friends have something on their blogs about life before arthritis. There are often references to the "old me." At the risk of having some smart ass point out that the old me is really the young me, I thought I'd share a little of what I used to be able to do--because to grieve something well, you have to name it and acknowledge what it meant to you.

The old me could kayak all day--the Upper Coeur d'Alene was my favorite . . .

The new me hopes I'll be able to kayak flat water--a few hours would be great.

The old me could hike for hours at a stretch . . .

The new me can walk about 20 minutes--slowly--before the pain gets bad enough to make me stop.

The old me could sleep on the ground, then chase a toddler around a campground . . .

The new me can't sleep without Vicodin, Neurontin and sometimes Benadryl--four to six hours at a time when I'm lucky.

The old me could cut down a Christmas tree in snowy woods . . .

The new me ran out of energy to decorate my tree-lot tree this year. It stood there naked for three weeks, then my husband took it down.

The old me and my husband built this wall--four feet high and 100 feet long. Each of those blocks weighs 76 pounds. The old me could lift one by myself.

The new me has to tell the baggers at the grocery store that I have a "bad back," then carry the bags to the house one at a time. My husband carries the laundry up and down stairs and opens jars and bottles for me.

The old me could stay up until the wee hours of the morning to accomplish a task--in this case, a cake shaped like a police car. I could do whatever it took.

The new me has about 5 good hours a day before the fatigue sets in and the pain ramps up.

The old me could eat pasta without consequences. Then I could run off the calories--three miles a day.

The new me avoids gluten, dairy and soy which contribute to the overactivity of my immune system. The new me can't run.

The old me planted a garden.

The new me struggles to tend it.

The good news is: the 48 hours I spent venting was strangely freeing. It enabled me to do a thorough inventory, and once the losses were truly counted, I was able to tally those things about the old me that haven't been lost--the ways "me" continues to exist.

For a hard core do-er--that is, someone who defines herself by what she can do rather than who she is--this is more than a small victory. This illness, in stripping me of physical abilities, had completely upended my identity. Grief hid me from myself for a while--for grief is so very thick and dark--but I'm back now. At least, I'm back in the ways that really matter.

Thanks to my dear friend Goat who helped me come up with this list of "old me" characteristics that have less to do with what I could do and more with who I was (and still am).

The old me was/had:

chutzpa--yep, still there
irreverent--oh, yes
quick wit--well, people laugh at me regularly, does that count?
fearless--that's never been strictly true, but I fake it well
integrity--I hope so
never dropped the ball--well, sometimes I do now, but I'm finidng it can be a good thing
transparent--you're reading this blog, aren't you?
didn't like to fail--still don't, but I'm also learning to redefine failure
listens well--learning to listen to myself as well as others
not afraid to begin, harder time ending--still true, getting better at endings
kind--I think this part of me is back
ridiculously bad boundaries--yeah, this one might be worth losing

So what's left to count? All the ways the new me might be getting better, gentler, wiser. This is what I'm praying for--all that painful-to-learn stuff that you really shouldn't pray for unless you mean it. Patience. Compassion. Insight. Depth. No one wants to live with a chronic illness, but, hey, as long as we're here . . .


  1. It's hard to accept the losses, but so important to focus on all that you still have - and what you may gain. I'm 2 years into my diagnosis (RA) and doing much better than I was at first, but I still have days when I mourn the "old me." Most days, however, I celebrate the strength this ordeal has brought to my marriage & the wisdom and patience I have garnered.
    I truly believe that God only gives us what we can handle. And here we are, handling it - guess He was right.
    Sending good thoughts & prayers your way.

  2. You're right. In order to grieve - and eventually letting go - you have to name, to look it in the eyes and put it down. And it can be so very hard.

    I often say that RA is part of what I am, not who I am, but sometimes, the who feels defined by the what and it's a real struggle to separate the two.

    I'm glad you found some be's.

  3. Amber, thanks so much for the encouragement. I'm only about 6 months in from diagnosis and still trying to find the drugs that will work. Hopefully, things will get better physically. But I'm strangely OK with it all now (for the moment anyway). Learning to redefine my value, perhaps, as something beyond the physical.

  4. Lene,

    Yes, it is so hard. Especially when folks around me interpret my "letting go" of things as giving up. And it's not that at all. If I get to a point where I can do some of these things again--fantastic. But to rail against the disease in only the physical quarter takes up precious energy from living out the gifts of life right now. So leaning into the "be's" feels right, and helps with that challenge of separation of disease and "me" that you've so accurately described. Thanks for reading and sharing.

  5. This is a beautiful post. I've never been one to look back too hard; I live in the moment and always have. But you've given me something important to think about, Kris; the person I was vs. the person I am today. Many aspects of "me" haven't changed at all, but I've avoided facing what are, in fact, physical limitations. Thanks for sharing your journey with us.

  6. It will be interesting to see if in two years you do a post of the wonderful things about the "new" you that didn't exist in the "old" you. While our disease takes a lot from us, it also gives us surprises that we never imagined. You are doing wonderful and I see your future being that way too. Good luck.