Friday, August 28, 2009

Collecting Moments

l was laying here tonight looking at this lovely canvas my friend/neighbor Laura gave to me awhile back … it’s covered with little phrases like “Unleash Your Joy,”  “Embrace Your Truth” and “Trust Your Creative Spirit.”

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The one that struck me tonight, however, was “Collect Moments of Kindness.”

I had obviously read it before, but I was always skimming over it too quickly… thinking it was referring to spreading kindness to others, or acknowledging the kind gestures that have been directed at me. But it doesn’t say either of those things. It says to collect them.

Now, I’ve never been much of a collector. Growing up my friend Katie collected Precious Moments figurines, another friend collected porcelain china dolls, but I never had a desire to have a curio cabinet filled with only one thing.

I prefer things that are mismatched. Unique. Eclectic.

But moments of kindness… that is something of which I could become a collector. It’s stunning for me to realize that the concept isn’t just a given, that it has to be a conscious choice, but it does. I am a woman who has been gifted with more kindnesses than I could ever keep track of in my lifetime. Some have been huge gestures, some have been accidental, some have been material, some have been moments that could only be seen with the heart. I have been given the smallest of words that have filled me up and spilled over into every aspect of my life… kindnesses that could not be contained.

The question is, did I choose to accept them, acknowledge them and then let them go… awaiting the next kindness to befall me? Or did I collect them? Do I still have them stored in my curio cabinet where, when I have a day that needs something beautiful to happen, I can pull out the memory to admire it and appreciate it as though it was just given that day?

I’ve decided to become a collector. Don’t get me wrong… I am constantly and abundantly blessed by unexpected and undeserved kindnesses all the time. But I realized today that when things are difficult – when one thing after another pops up and some new thing goes wrong – all I have to do is stop in the middle of the madness and view my collection. Nothing new has to happen to make things better. Nothing has to change… I just have to look at what I already have.

I have a collection of kindnesses that constantly remind me how much my blessings far outweigh anything else that may come along. How can I have a bad day when my collection stacks the deck in my favor?

So tell me, are you going to choose to be a collector?

Sunday, August 23, 2009

Unqualified

"In a very real sense not one of us is qualified, but it seems that God continually chooses the most unqualified to do his work, to bear his glory. If we are qualified, we tend to think that we have done the job ourselves. If we are forced to accept our evident lack of qualification, then there's no danger that we will confuse God's work with our own, or God's glory with our own."
— Madeleine L'Engle

I must be chosen, because I’ve never felt more unqualified in my whole life.

My friend Kelly and I have talked in the past about how illness has an insidious way of taking from people that which they least want to give. When her daughter, Kate, had brain cancer they knew her thick, curly hair would never grow back. When her dad was diagnosed with cancer, he lost the independence he so greatly valued… his ability to go for walks and play golf and be active. For me, well… I gradually lost almost every ability I had. At first the hardest for me was dancing… I’d have to leave weddings after the reception because watching everyone else on the dance floor was literally painful I missed the joy of it so much. But that was nothing compared to not being able to sing for people anymore.

My voice is still there, but my breathing isn’t. The pain of taking a breath is too much, and now that my whole world consists of life within these four walls, there’s no one to sing for anyway. I won’t again walk into my church and look into the eyes of a congregation as I connect to them through the spirit of the music.

And I’ve honestly learned to be ok with that. I miss so many things, but God has graced me with an acceptance of it. I don’t hurt for those things anymore and truly enjoy the memories of them. I’m so grateful to have had those experiences, and can look back on it all and see how very blessed I was to have enjoyed them while I did.

But right now, in this new challenge, I’m feeling intensely unqualified and I’m utterly lacking in acceptance.

When I was 16, I went through inpatient treatment for anorexia. It’s something I’ve managed throughout the years, but it’s also something that has never left me. I’ve never been able to change the way my mind sees myself, but I’ve learned to work around it. Like everything in life, we have choices… and I made the choice to do what I needed to do to be healthy and not let how my mind saw my reflection in the mirror dictate my actions. But I have always had to fight what I knew to be true compared to how I saw myself.

There was very little left for this disease to take from me, but since the Cushing’s set in I suddenly have been living my worst nightmare. Beyond the debilitating pain and sickness, it has completely altered my physical appearance. In the past three months I have ballooned by over forty pounds, all of which is unevenly displaced in my face, neck and torso. I am absolutely unrecognizable. If someone I knew passed me on the street, it would never cross their mind that it was me.

And I have no idea how I’m supposed to be processing this.

Up to this point, I’ve been getting through it because I've focused more on everyone else than on me. It’s been about deciding if my friends’ kids should be able to see me or if it would be too confusing and upsetting. It’s been about changing how I react depending on who comes in the door [which has only been a handful of people, since I’m not comfortable being seen]. I see the pain in their faces, how long it takes them to look me in the eye, the way they try to fight back their tears or just let them flow because they can’t help it. I see my pain reflected in them and I try to change my demeanor to their reaction to try to ease it for them. One friend told me she knew she was avoiding visiting because it was so hard to look at me… it’s easier to pretend on the phone that I’m not as sick as I am, but it’s impossible in person.

I get it. It’s how I feel every time I walk by a mirror. But it’s an insane reality to process.

I know how to change my reactions to try to help others… it’s myself I don’t know how to react to. It’s how I’m supposed to deal with the shock of my reflection, of not seeing myself, of feeling like I’m living in someone else’s body. I’ve spent the last few months pretty much immobile from the pain of the steroid reductions, and I’ve learned how to adjust and get through that. But the pain of losing the only self I’ve ever recognized… and figuring out how to cope with other people seeing that as well… I don’t know how to do that.

I’m completely unqualified.

That’s why I finally decided to write about it. I can’t think of why I’m meant to go through this unless maybe I’m meant to share it with you. Maybe it’s not about me… maybe I’m just the unqualified, chosen to tell you all about the struggle because it’s one more facet of illness that needs to be talked about. Or one more facet of life’s journey that is supposed to be shared.

I just have to keep reminding myself that in the end, what it all boils down to, is that none of this life is about me. It’s about what He needs from me. Thank God He’s qualified, because it means I don’t have to be. I just have to keep stepping forward in faith. So that’s what I’m trying to do.

So glad you all are stepping with me.

Wednesday, August 19, 2009

Foot In Mouth

Just checking in to let you know I’m still here. Things are getting rougher for me with each reduction and I just haven’t been able to get a post finished to share with you, but didn’t want you to think I dropped off the face of the Earth or anything! I’ll post something more in depth soon, but I’m leaving you with this little bit of funny to tide you over until then…

Since we’ve covered in numerous past posts like this one, or this one, that I frequently put my foot in my mouth and do ridiculous things, it makes sense that the following commercial cracks me up every.single.time. it comes on television.

Hope it makes you chuckle, too :)

Friday, August 14, 2009

Castaway

I was doing a little “chit-chatting” in the new comment section the other night, and one of your fellow blog peeps, Pol, sent me this story in a comment:

The only survivor of a shipwreck was washed up on a small, uninhabited
island. He prayed feverishly for God to rescue him. Every day he
scanned the horizon for help, but none seemed forthcoming. Exhausted,
he eventually managed to build a little hut out of driftwood to
protect him from the elements, and to store his few possessions. One
day, after scavenging for food, he arrived home to find his little hut
in flames, with smoke rolling up to the sky. He felt the worst had
happened, and everything was lost. He was stunned with disbelief,
grief, and anger. He cried out,
"God! How could you do this to me?"
 
Early the next day, he was awakened by the sound of a ship approaching
the island! It had come to rescue him!
"How did you know I was here?"
asked the weary man of his rescuers. "We saw your smoke signal," they
replied.

Remember that every moment you don't give up is a victory. You are winning battles every moment of every day.

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Talk about a perfect lesson at the perfect time. It made me think of this quote, that’s been rattling around in my brain lately.

quote works out

As you all know, I usually try very hard to live in the here and now… I even went so far as to list it as number three on my list of life goals: To be aware and present in every moment.

I’ve got to be honest. Lately, I’ve been trying very hard to live anywhere but my here and now. It’s a weird place for me because it leaves me in limbo… I don’t want to look ahead too far; it’s daunting. And I’ve found it never serves me well. I look ahead and there are no concrete answers as to how I will do with the next reduction, how I’ll do when I’m off the steroids, how long it will take for my endocrine system to start working, how long it will take the effects of the Cushing’s to subside, how long before I look and feel like me again. There are no predictions to how this will affect my Spondylitis when all is said and done, what will happen to my pain levels, where my level of functioning will be over time. Everything is simply speculation.

How will I bounce back? Good question. No answers. No sense looking ahead.

But living in the here and now… there’s not a lot of here and now other than being still, medicating, dealing with pain, feeling sick, resting. I don’t have much ability or resources to distract myself, so shutting off my brain and watching back to back seasons of Alias seems to be my best reprieve. I’m officially living in the world of secret-agent Sydney Bristow because it feels like this world I’m in isn’t ever going to change.

aliaszg2

Five more weeks of steroid reductions before I even see a glimmer of what may happen next… it feels like an eternity if I let myself think about it, so I’m living in the world of CIA spies instead. And pretending like I can kick some serious terrorist tush, just like super-spy Sydney.

But then I read that story of Pol’s and I thought of the above quote, and I was reminded that it’s ok to live in the here and now from time to time – and to even look ahead a bit – because I’m not stuck here. I’m just in the middle. I’m not at the crossroads, I’m not at the end of the journey, and – most gratefully – I’m no longer at the beginning of it either.

[That in and of itself is a reason to be joyful.] 

This hasn’t worked out yet, which means it isn’t the end. Which means good stuff has yet to happen. Which means there are good things to look forward to… and I want to be aware and present so I will be sure to notice them when they happen. I just have to be patient and keep building my hut so it’s ready for the smoke signal.

But just for fun, I’m going to be building my hut while pretending to be Sydney Bristow. :)

Sunday, August 9, 2009

Rambling…

Ok… let’s get the update out of the way: this is kicking my butt. I would totally use stronger language to emphasize that point, but my Grandma reads this blog. [Hi, Gram! Love you!]

I’ve asked the universe for some time off from this craziness, but apparently it isn’t hip to that idea. I think it revoked my “vacation from reality” time due to the struggling economy or something. Wouldn’t it be great if the universe could take something like a “Cash for Clunkers” incentive program and make it into something useful for people like me? We could call it the “Bucks for Broken Bodies” trade in. Now there’s an incentive program I could get behind! But until then I’m just going to keep doing what I always do:

Buck up and take it like a woman.

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Now, onto more pressing matters…

Apparently, in my absence, my comment section magically updated itself. I love it when technology doesn’t require me to do a darn thing. :) I popped on the other day and replied to some comments and enjoyed a little chit-chat with some of you. When leaving a comment with this new updated system, be sure to click “Follow” at the bottom of the comment form and check the box next to the space where you can put in your email address. That way when I reply to your comment it will show up in your email inbox and you’ll know I responded. [No one, not even me, will ever see the email address you enter.] It’s just a fun way we can have little conversations when I’m able to be on the computer a bit.

Or, if you know me in real life and have been looking for a way to tune me out without being obvious, just don’t check the box and I’ll never know the difference. :)

Signing in with the new system is easy… just click the “From” button and sign in under any program you already have an account with, or simply type your name in place of “guest” if you don’t have any of the online accounts. Easy-Peasy.

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Not much else to report. I’m honestly still pretty much out of it most of the time, dealing with the Cushing’s symptoms and the pain. I love checking the comments and emails and hearing from you… truly, thank you so much for that. I wish you all could know how much you have helped me and kept me sane.

I feel like I’m constantly adjusting to the changes that are occurring as I continue with the step downs of the steroids… the pain in my legs is getting more intense and constant, which means I’m moving my legs as little as possible and getting up less and less. And while the laptop is a God-send, it’s getting to the point where having it set on my legs is enough to set off more pain, too.

Rock… Hard Place? Oh, yes… they are still enjoying each other’s company immensely and in new ways every day. But have no fear, I’m still way more determined than either of them. :) It just may mean I have to be sporadic with a comment here or a comment there… but nothing is going to keep me from chit-chatting with you. :)

Well, unless you decide not to put your email in in the “Follow” part of the comment form. Then it would be just me doing the “chit” part and you skipping the “chat” part. And really, after this rambling post by an obviously over-medicated woman, who could blame you?!?!?

smile_wink

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twitter IMG_2311Umm… did you forget about me???

Oops… forgot to mention that Riley says hello. He has seriously been the most perfect dog, sleeping next to me on the couch for hours on end. As my body keeps expanding from the Cushing’s [yes, still living that nightmare] everyone says they think he’s getting heavier, too. He’s such a loyal pup he’s actually gaining sympathy weight. Now THAT’S dedication to your owner.

Almost makes up for all those times he’s marked in the kitchen.

Tuesday, August 4, 2009

Shoo, Birds . . .

You cannot prevent the birds of sorrow from flying over your head, but you can prevent them from building nests in your hair.        ~ Chinese Proverb

Not only did the mental image of this proverb make me chuckle, it also made me crave Chinese food. Just thought you’d like to know that. :)

So, it appears I’ve got some birds of sorrow swarming around here, and I’m afraid they are taking up residence for awhile. But I promise I’m not going to let them build any permanent nests in my hair. I keep wanting to ignore the stupid birds so I can tell you that things are looking up… that I’m turning a corner… that things are going to be back to normal in no time.

But here’s the thing… that’s just not the direction this seems to be going. I’m learning to accept the fact that it looks like this is [at best] going to either stay the same, or [more likely] keep getting worse before it gets better. Not what I was hoping for, but it is what it is. I did another step-down of the steroids on Sunday, and now I know that my body is liking each reduction less than the one before, with the pain and other effects of the Cushing’s becoming more amplified. It’s really exhausting, and the nurse today said that is probably how it will continue with each passing week.

It’s hard for me to know what to tell you, other than to just let you know this is how it will be for the next couple months. None of it is pretty, and the further into this we get, the more I am acutely aware that this will be a marathon and not a sprint… one that will continue after the steroids are out of my system. I can’t say I like it, but I’m starting to wrap my brain around it.

What I don't want to be, however, is a Debbie Downer and spend all of my energy checking in with you all and saying, "Wow, it's worse again this week!" Because really, where’s the fun in that? I figure if I have to be immersed in this cycle of pain and medications 24/7 in my body, I should at least try to use my brain to escape it a little when I can. I promise I’ll keep being honest with you, and let you know if something big happens or changes, but for the next few months it’s safe to assume that I’m doing little else than managing my pain, taking meds and trying to get through what’s put in front of me.

So… when I do expend some energy here with all of you, I might make it about silly and frivolous things sometimes, simply for my own sanity. I don’t want to mislead you into thinking all is well on those days, but I’m trying so very hard to make sure those annoying birds don’t build a nest in my hair … which means that along with the real life and the contemplative, I’m going to try to choose the joy on here as much as I’m able.

Now, just because you can, go do something silly or joyful today. Even if it’s just to close your eyes and soak up the sun for a moment. Take a minute in the middle of your day and consciously CHOOSE JOY.

It’ll help keep the birds out of your hair.