Art Imitates Life

One of the perks of my current chronic-illness life is tied closely to my lack of schedule. This has enabled me to tag along on several occasions with my awesome husband when he travels for business.  Which is what brought me to Seattle in January, not a typical time for tourists to flock to the Emerald City.  However, I loved every minute.  I was enjoying my second day of moderate sight-seeing (Uber saves my life, seriously) with a turn through the Chihuly Glass Museum, which features the most remarkable, enormous sculptures and installations, created by the native Northwestern artist, Dale Chihuly, all from blown glass.  I had wandered through many of the rooms filled with these exquisite creations, ready for some time off of my feet, when I happened upon this astonishing place.

 

I sat in this beautiful glass house, custom made to showcase this incredible art installation.  I stopped to sit, taking time to drink this in (let’s be honest, I was tired, really needed to sit down, and needed to charge my phone almost as much as I wanted to enjoy the art), sheltered from a chilly Seattle afternoon, grey-skied and wintry.  As I gazed up at this 100-foot-long, 25-foot-high installation, I marveled at the size, but as I looked longer, looked closer, I began to notice the individual intricacy of each and every piece.  No two (of hundreds!) were exactly the same- different shapes, patterns, colors, gradations of clear and opaque- but the effect was stunning, harmonious.  Each piece was created to fit perfectly in its place and seamlessly complement the pieces around it.  Hand crafted and curated, crimson, marigold, tangerine, lovingly placed by the designer and creator.  Again, stunning.  Each shape and arc was unique, they bent and curved in their own way, not detracting from the beauty of their neighboring pieces, not minimizing, but enhancing.  They didn’t compete to be the center of attention, but in concert together each played an incredible role; the impact of the piece would be diminished with the lack of one.

Then.  A bolt of pure sunlight pierced the January clouds and shone through these glass pieces, setting them ablaze and they were transformed.  And my breath taken.   Liquid illumination infused the sculpture and it became even more, so much more, than it was. 

We, my sweet friends who are good enough to read my ramblings, are these pieces of art.  Uniquely and intentionally formed, without duplication, precisely situated to serve a specific purpose, fill a hand-selected role.  Perfectly placed to enhance and magnify those around us and the One who formed and placed us.  Not to detract, not to compete, not to be the individual center, but gloriously beautiful on our own because of the care taken to individually craft us all with our own bent, our own color, our own gradations.  The whole suffers when one is not there; we are only called to be the unique, crazy-amazing piece we are without responsibility for the placement and beauty of the other pieces.  And we are all transformed when filled with the light of our Creator, making more from what was already there.  You are a masterpiece ready to be filled with light.  Be the beauty you were placed there to be, individually and as part of your whole.  

Clouds covered the sun, and the Seattle sky washed over again steel grey.  I smile still at the memory of glass aglow.

Control

I am a girl who likes to steer the ship.  I like to have some say (okay a LOT of say) in what’s going on and I like to day-planner/project manage/to-do list/timeline my way through things.  So 2015 was a bit of an upending of every part of my nature.  I have learned, in no uncertain terms, that I am not in control. 

My ship hit an enormous “perfect storm” this year, highlighting on every front how much I am not in control.  My chronic illness was beyond my control, unwilling to cooperate with my plans, timeline or agenda.  My dad’s health (and eventual passing) was out of my control, people’s behavior, choices, and decisions about their future were out of my control, the necessity of stepping away from a job I loved was out of my control.  Not okay with me.  But as I’ve gained some perspective that can only come with a bit of time and a lot of reflection and prayer, it's okay that I’m not in control. 

I still have that primal urge to grab the steering wheel back and try to determine direction, but I’m learning.  My best ideas aren’t nearly as good as His perfect ones.  This nearly puts me into a panic at times, worrying about the outcome of some of these things, but I have learned in multiple devotions I’ve encountered just since the beginning of this year (it takes me a while to catch on, so God has to keep pounding the message home for me) that it is on me to be obedient, and the outcome is up to God.  Again, his plans and timing are so much better than mine.  I’m not called to understand the “why” of each move, I am called upon to honor Him in the midst.  And sail on with a surrendered and grateful heart. 

2015 was a storm for me, to say the least, a storm that frequently wrenched control of my ship from my hands, leaving me to feel rudderless and battered.  But I’m reminded of the chorus of a worship song from probably 15 years ago and am so grateful for the anchor that holds me solidly safe in the midst of the storm:

Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm
And other times He calms His child

Hospitals and Rainbows

Oh, how one phone call can change everything.  We were up in the Tahoe/Carson City area, just our family of four, enjoying some time away after our college student and high school student finished finals and my dad was home from skilled nursing as he was recovering from a broken hip.  The weather was snowy and beautiful, we were loving our time together in one of our favorite places, and had enjoyed a wonderful dinner the night before with one of our most favorite people.  I slept in for the first time in months.  Then I looked at my cell phone upon waking.  Three missed calls from my Texan brother who had arrived at my parents’ house for Christmastime just 36 hours before.  I felt my stomach drop.  I called back.  I could hear it in his voice before he said anything concrete.  We had to come and come now.  Dad was in an ambulance on the way to the hospital. 

We were four hours away by car in the best of weather.  It was December and anything but the best of weather and road conditions.  We woke the kids and pulled out of the hotel we were planning to make our home for the next day and a half.  As we drove, I kept trying to talk myself into being ok.  I had passed many, many hours in hospitals with my dad these past few months, but every time, against the odds, he rallied and went home sooner than expected.  He would rally again, right?  I looked toward the mountains on our left and saw an amazing rainbow.  Nice, I thought.  Not something I see every day, but I could hear the edge of a whisper to my anxious heart: “I’m here, I’m faithful, and I’ve got this.”  Good reminder, but quickly forgotten in my distraction and fear. 

We kept driving and I kept trying not to think too much.  We labored through snow and rain over the I-80 pass and started back down through the mountains, toward the hospital where my parents and now all of my siblings were keeping watch together.  I was kept up to date through texts and calls from my sister in law.  It didn’t look good.  One last ditch effort treatment, she said.  That set my mind spinning, pulling me into the space I was not prepared to go.  No.  Not how this was supposed to be…and then Grace said, “Hey, look!”  I turned in the direction she was pointing and saw it:  piercing through clouds in an unlikely patch of rain streaked sunlight was a full double rainbow.  Really?  Twice in one day?   He reminded my heart again, a little louder, “I’m here, I’m faithful, and I’ve got this.” 

With my husband’s efforts to drive as quickly and safely as possible getting us closer and closer to the hospital where my dad was fighting for his life, I prayed that I wouldn’t get anymore texts or calls until we were there.  And then.  “The treatment didn’t work.  He’s not going to make it” showed up on my phone.  And all the oxygen left the car.  I looked up again, not knowing what to say.  And again He spoke.  Another full double rainbow outside my window.  “I’m here, I’m faithful, and I’ve got this.”  I knew then (because the other two times weren’t quite enough for me) that “I’ve got this” might not look like I wanted it to, but it would ultimately be ok.  Truly.  Just because it wasn’t the outcome I wanted, with my Dad once again rallying and coming home in time for Christmas, didn’t mean God didn’t have this in His hands.  Because He has me.  And He has my family.  And He has my dad. 

About 45 minutes away from the hospital I got the message “He’s gone.”  My heart broke. There were no words.  But as we walked into that ER private room where all my family surrounded the physical form that carried my dad for 88 years, I could still hear the whisper in my heart: “I’m here.  I’m faithful.  I’ve got him.”  

In the nearly two weeks since this happened we have mourned, cried, and buried my Dad.  We have grieved together and experienced the kindness and sympathy of so many around us.  And through all this I have held close to my heart these words:

The Lord is close to the brokenhearted and saves those who are crushed in spirit.

-Psalm  34:18

I know He will be present, faithful, and hold us close as we walk into these next days and years.  It doesn't always look the way I think it should, but as long as He is close by, I will walk in confidence.

Unraveled, or A 6 Month Reflection

 It’s been a few weeks since I posted.  Actually several weeks.  This is solely (or almost solely) due to the new hobby/obsession imparted upon me by my sweet cousin, Sherie Wells.  She taught me how to knit.  She and her mom/my cousin Norma came down one sunny day and sat with me at my kitchen table, chatting and showing me the basics.  After that very enjoyable visit, I couldn’t stop.  This fills so many needs for me, I can’t even begin to tell you.  With such a prodigious list of "can'ts" in my life, I can knit on even my worst days.  I can lean back in my recliner/couch with Downton Abbey to keep me company and work through something exceedingly simple, then see a finished product.  On a “better” day I can create a more complex project and in the end I have a gift to hand to a loved one.  I can actually accomplish something.  Who knew?

Well, let me back up.  My first project wasn’t just whipped out in an afternoon.  It took me 2 days.  To knit a wash cloth.  Seriously.  I kept making a mistake, dropping a stitch, leaving a hole, or losing where I was, so I would pull the WHOLE THING out, completely unravel, and start all over again.  I had to go back and watch YouTube videos to remind me of what to do.  I had to learn how to finish the project off from a YouTube video.  And still it wasn’t at all pretty.  But I made it through and learned a lot.  Here’s a picture.  Thanks in advance for NOT judging me...

It’s misshapen and full of holes, but I do actually use it.  When I finished I thought of scrapping it or unraveling it again, but wanted to keep it as a reminder of where I started.  And I smile as I use it to wipe down my kitchen counters. 

This whole experience of learning to knit is so representative of the past six months, six months in which my life has changed so very profoundly.  Six months ago today was the last day I worked in my lovely office at Wells Fargo.  I left that Friday afternoon not feeling well, but had no idea that day would be my last in my job that I loved ever so much.  In the intervening months I have tried to do life in so many ways, all of which had to be ripped out and restarted.  I tried to fit my self-decided recovery timeline into my life.  Unravel, start over.  I tried to decide ahead of time what my diagnosis and treatment would be.  Unravel, back to the drawing board.  I tried to schedule and control things.  Unravel, begin again.  I tried to make things in my world look like they did before.  Unravel, take three.  I tried to find any remedy to make myself feel like I used to.  Unravel, start again.   I tried to push myself physically like I used to, in hope that it would fix me.  Unravel, rest for two weeks, reboot.  

Six months later I look back on a hole-filled, misshapen new life, those flaws marking the days I struggled the most, deepest disappointments, days of grief, days of frustration with debilitating limitations, pushing back so hard and wanting things to be like they were, countless tears spilling over during the unraveling, mourning my losses, setting aside my pride in so many ways.  Looking back there has been a lot of “not pretty,” but I have learned so much.  Here at the end of it I am content.  I have found joy and peace in this new pace, this new phase.  It’s not what I would have chosen, but the blessings are great.  I am learning much in my slowed-down life.  Years and years have seen me on someone else’s time frame, able to push through and do whatever is necessary.  But I am learning that life’s rhythm can have a very different time frame.  I am learning to listen to my body, to my energy level, to what I truly can and can’t do.  

Do I feel any better?  Physically, no.  But in my heart and my head, definitely.  

Will I have to unravel and start again?  Absolutely.  But I will continue to learn every time I do.

As I knit projects for people, I pray over them.  As I watch God knit this new life, this new pace, this new way together for me, I sit in gratitude, trusting His pattern is better than any other.

My Father's Eyes

I ran across this early this morning, looking at computer files from two plus years ago.  I'd written this as part of a process I was going through in leaving one phase of life and moving on to the next (from teaching to the business world) and had completely forgotten it existed.  I find it equally applicable in my radically altered life today, so I thought I'd share.

My Father's Eyes

I see chaos

He sees surrender

I see pain

He sees purpose

I see my limitations

He sees my potential

I see failure

He sees His redeemed

I see my impatience

He sees my passion

I see a trainwreck

He sees a teachable heart

I see my fall

He sees my progress

I see my sinfulness

He sees the blood of His son

I see the long road ahead

He sees His steps next to mine

I see my battle, my struggle, my fight

            Against the same sins and pain

            Wondering if I can persevere

He sees a butterfly in her cocoon

            Struggling to break free

            Knowing that it is the struggle that will create patterns

            Of beauty and color on the fragile gossamer

            Wings that bear me up

I see broken

He sees His

Identification, please…

I am staring down the barrel of my and my husband’s 30 year high school class reunion.  In my experience, reunions, while very fun, are fraught with myriad pressures.  Some are admittedly superficial in nature: What will I find to wear that strikes the right balance between classy, cool, and not trying too hard?  Can I lose 20 lbs. before then?   Do I look that old, really?  Am I as cute as those “popular” girls are now?  And some are slightly less superficial: What do I even say when people ask what I DO?  Since I’ve been home with my illness, my kids' response when asked what I do has been something like this: “Well, she watches a lot of Netflix, she knits, and she cooks.”  Doesn’t sound so very prestigious or impressive when you frame it in those words, does it?  Not that it’s entirely inaccurate.  

It’s a strange thing, taking time to consider one’s identity at this age.  I’ve identified myself in many different ways during the course of my life: Ken & Bonnie’s daughter, student, Tim's/Ken's/Rickey’s little sister, James’ wife, musician, weight loss counselor, marketing director, stay at home mom, women’s ministry director, freelance interior designer, teacher, student council advisor, executive assistant.  Lots of identities.  Isn’t it interesting, though, that so many of the ways I’ve identified myself (and, I suspect, others identify themselves) are based on what one does, one’s vocation, or what fills one’s time.  Is that really who we ARE? 

In this peculiar time of my life there’s not that much doing in my world.  Yes, I’m still a mom and I stay at home.  However my kids are 20 and 17 ½, so being a stay at home mom carries a bit of a different vibe than 15 years ago.  Or even 10 years ago.  As with many other parts of my life, this radical change in lifestyle because of my illness has changed the way I see myself.  I DON’T want to be identified based on my illness, although it is part of me.  

But I am now finding my identity more and more in my relationships, who I AM, whose I am, rather than in what I do.  Being over doing.  Character over activity.  Based on that view, I am finding a new way to identify myself.  I am a forgiven and blessed child of God.  I am a wife to a wonderful man, one with whom I share an amazing love and this incredible adventure called married life.  I am a mom to two kids I adore, people I would love even if they weren’t mine.  I am a daughter, a sister, a friend, a cousin, blessed with incredible people who walk with me through all the beautiful and difficult things.  I am one who is ready to listen and to laugh.  I am one who finds the humor in hard things and tries to extend grace.  I am a student of life and a reader of books. 

I still don’t know what I’ll say at the reunion when asked what I do, but I think I won’t care as much about that as I once would have.   Maybe, instead, I think I 'll smile, remember who I AM and whose I am, and turn the conversation to ask what THEY do.  

Managed Healthcare: My Love/Hate Relationship

Warning: Semi-rant ahead.

One of the things I really desired as I walked and blogged my way through this whole experience is to be authentic and to share what I'm learning, the good, the bad, and the ugly.  So today I'm adding a bit to that transparency journey and sharing some of the practical rather than emotional parts of my walk.  A bit of the ugly. 

I have been blessed with good health most of my adult life and have not had to deal with navigating the labyrinthine chaos that is the medical referral system until now.  I am grateful that we have good insurance, which, overall, has served us well.  However, give them something that is slightly outside the box and they don't know what to do. 

Just to update any of you who haven't heard the latest:  symptoms and test results (lack of positives) have all led to a diagnosis of what has been called chronic fatigue syndrome in the past, but is more accurately known now as Systemic Exertion Intolerance Disease (SEID). See graphic and link below for further info.

Here begins my rant:  It frustrates me that I am more knowledgeable (JUST based on internet research) about my condition than my experienced and educated primary care physician, who "can't do anything else for me."  It frustrates me that no one specialty claims/treats/works with SEID.  Diagnosis and "treatment" are often shunted over to Rheumatology, since SEID bears some similarities to fibromyalgia, which is treated under that umbrella.   It frustrates me further that my the rheumatology department of my medical group won't take a referral concerning SEID. The referral department told me that if I come up with a doctor I want to see, just let them know and they'll give me the referral, but they don't know what direction to point me.  The two SEID specialists in the area that I've been able to track down on my own are outside my medical group and won't accept me since they aren't part of my group.  Seriously?  Am I the only person in the greater Sacramento region within our medical group (one of the "big ones" in the area) who has had this disease?  They've never come up against this before?  It frustrates me a GREAT DEAL that there is no advocacy within our medical group for this condition (if I'm wrong about this, please let me know) and that the one with the illness is now responsible for trying to run down a doctor who will listen. 

And yes, we are considering/working on changing medical groups at this point.  Thankfully our insurance will allow that, however, we aren't guaranteed that the grass will be any greener on the other side of the managed care fence.

I know others who have dealt with this whole pantheon of medical frustration and I salute them.  I further know this is just another step in my journey.

I am reading up on my condition and am learning to work toward being the healthiest version of myself I can given my condition.

I am blessed to have people in my life who are offering alternative solutions.  I recently overhauled my eating habits (Whole30/paleo) at the encouragement of one of my dearest friends who was changing her own eating habits.  I was gifted by my sweet cousin with a box of essential oils that I am trying as treatment for my symptoms, and have already seen some progress with pain management. 

I am doing some yoga (short duration is all I can do) and taking vitamin supplements.

I am, most importantly, using the time I have with my drastically altered lifestyle to enjoy and appreciate my family and friends and reconnect with many of the things that are most important to me: time with God, creativity, reading, writing, occasional craftiness, and stillness.

For further info about CFS/SEID, check out this article (you have to scroll down a bit, past all the links):

http://www.medicinenet.com/chronic_fatigue_syndrome/article.htm