Monday, July 9, 2012

Socialized medicine, a prayer request and who I am really

I have written fifty blog posts in my head the past week or so.  I've scribbled plenty of my thoughts on actual pen and paper.  I've been believing impossible things in the light and clinging to my tear soaked pillow in the dark.  One of the most difficult things about truth telling is when you've said almost everything out loud and suddenly you decide to be quiet for awhile.  When you have asked for prayer for just about every desperate need in your life it becomes like a prison to hold a request deep down inside yourself like I have.  I have been suffering when I should have been sharing. 

One of the things I've wanted to post is a reaction to the Supreme Court's decision on Obamacare.  Many people have asked where our family stands on these issues since our lives revolve around health insurance and access to specialized doctors and surgeons and also the financial devastation that occurs when a family has overwhelming long term health care costs.  None of this polarizing issue is political for people like us.  We have been blessed for Dan to maintain continuous employment during Danica and I's surgeries and treatment.  We have health insurance that costs us approximately 19.5% of Dan's income.  We still have deductibles, copays and percentages of self pay based on if the providers are in or out of network.  If we spent every penny of the rest of Dan's income on our health care bills and prescriptions and travel to our doctors we would not break even.  People wonder, even with us living in my parent's basement, how we are making it.  The answer is God's provision through YOU.  The only kind of socialized medicine that will ever really work is people taking care of other people in their own lives.  Family, friends, churches, communities all looking to their right and their left and loving well. 

Right before my decompression and fusion in November we received some amazing last minute love that provided directly for our needs.  One of these gifts came from my young cousin, Beki, who is a missionary in Peru.  She is supported minimally through private donations to a mission board.  Her financial sacrifice to us was very meaningful.  My aunt Chris and uncle David were able to take a trip to visit her in June and came here last week to get grandma and Anna Mae for a trip to Minnesota.  They shared many photos and stories of Beki's ministry there.  One of the people they spoke of stood out to me, and I have not been able to forget her.  They told me of Gloria, a woman who is completely disabled and lives at the top of a hill in Lima by herself and bedridden.  She is dependent on people to bring her food and water and change her diapers.  Beki would visit her and use her own money to stop at a little market and buy her food.  She would change her diapers and bedding that had many times been left for days.  She would show mercy, share hope and deliver grace to this dear one. 

I see myself in this story.  I could be that woman.  It reminds me how the issues we are facing are certainly not just political.  What is a life worth?  When is a person who is unable to contribute to society because of physical disability a liability to YOU.  Who should provide and care for this person?  Our lives, our families and our communities are not set up to even support those close to us much less someone we hear of through the grape vine.  By God's grace our family has uniquely and lavishly been loved and cared for in a "socialized" way.  I can't explain it, because it goes against almost everything we see happening to others in similar situations to ours.  The staying power of all of you who read this blog and pray for us and remind us in tangible ways we are still not alone is the most beautiful way to live.   I found out recently I was nominated and chosen as a recipient of The Canton Chapter of The Foundation for Community Betterment's fall fundraiser, Rocktoberfest.  You may remember Danica was chosen for their 2010 event.  Dan and I are both overwhelmed by these people, most of who we barely know, who want to continue to be part of our story and help us keep the faith by meeting very real needs.  I will post more about this event in the coming weeks and how you can help and attend so please stay tuned!

My own health remains very difficult.  The past few days I have been in bed with severe cardiac symptoms from my POTS and strange vascular issues like a pounding heartbeat in my belly, or my leg or in my head.  I have been afraid.  Tonight as I got down on my knees to help Danica put her shoes and socks on I could feel the blood pooling in my legs and that familiar cold rush and then blackness come over me.  I went down on the ground and Danica rubbed my back.  We went over the drill, "If mommy passes out, get sissy and call 911."  We have not had any movement in our need to leave the basement living.  We have talked at length with others about how we could perhaps eliminate mold in this environment and then keep it dry.  We don't see many other options even though my health is worse.  Dan said to me tonight as I showed my fear just a little, "You have to DO something."  Getting out of bed is my doing something.  Moving slowly through a day that requires me to rest after even a simple task is my doing something.  I used to feel like I could positively change our situation by sheer energy or will or some kind of action, but I am now completely dependent on hopeful prayer. 

This brings me to my request.  I need you to pray for the Social Security Disability determination decision being made sometime soon about my case.  This application and the process surrounding it is a secret I have kept from you because of the great stigma attached.  Despite my long work history and paying into the "system" If I am accepted I would become one of "those people" my conservative friends post about.  I would be someone not working and living off money from the government.  If I am someday well enough to go to dinner or buy a new pair of shoes or even take a vacation they will assume they have in some way paid for this and it has taken food from their family, shoes from their feet and beach access away from those who work hard enough to deserve it.  Our family has never been able to use any government resources before.  My decision to apply for this benefit came after encouragement from my counselor and my medical doctor.  There is truly no way I could work now.  My family needs my contribution.  Honestly, this is the only way I see us being able to move from here and attempt to heal and improve some of my issues.  I am humbled, but we need prayer this would not drag on through appeals and attorneys.  We need prayer that God would work His will through the hearts of those deciding my individual case based on the extensive documentation my doctors have willingly provided to fight for me. 

There are days I don't know who I am anymore.  A handicapped parking pass and disability application seem so foreign to who I believe I am and all I wish I could do with my life.  Once in awhile I find a few objects left from a former life and leave them out to look at them.  The shoes in the picture above were important to me.  I find it ironic I chose these shoes long before I knew I would be called a zebra.  I bought them for a prestigious real estate even on the terrace of the Monaco hotel in DC overlooking the National Portrait Gallery.  I have always dressed classic and conservative with my shoes being the only wild card.  I wore the perfect red Ann Taylor sheath dress with a choker of pearls.  My body was strong and healthy, and I wore lightly bronzed bare legs with zebra heels.  I carried the most exquisite Jessica McClintock black silk clutch with a stunning pattern of red, yellow and black beads sewn by hand.

Yesterday, when I felt completely lost in this identity struggle God brought these words from Holly Gerth to me.

We talk about our struggles.
We're friends, fellow travelers on this journey. She keeps repeating a phrase, "I'm the girl who...."
It's the phrase I've heard from the lips of hundreds of women. From my own too.
We face a challenge and redefine ourselves by it.

Here are some I've said:
I'm the girl who has social anxiety.
I'm the girl who has depression.
I'm the girl who can't have children.
Those sentences trap us, limit us, make us believe we are our worst moments.

 I clear my throat and whisper quietly into the phone what has set me free...
"That's not who you are, friend, it's where you are right now."

 She sighs with relief and says the words that are like candy for my ears, "You need to write about this on your blog." So here we are. Because I need to hear this truth more than once...and maybe you do too.

Your struggle is not your identity.
It's your location at the moment.

 If there were spiritual GPS, we could locate your spot in the desert. Imagine you did so with me and I said, "This place is my identity forever." You'd shake your head and say, "You're on your way to the Promised Land! This is just a temporary stop!"

 Then you'd remind me...
I'm the girl who is God's daughter.
I'm the girl with strengths placed within me for a purpose.
I'm the girl who's unconditionally loved by Someone who can get me through anything.

 Where we are in life changes.
Who we are stays the same wherever we may go.
Where are you today, friend?
And who are you, really?

Where I am, how I feel and my ability to change these things really are superfluous to my WORTH in Him.  This is why Beki goes to the jungle this summer to seek out those who need help and hope and saving Grace.  This is why my parents travel every summer with the youth from Faith Bible Church to teach a Bible school in Mexico and provide medical clinics to those needing care.  This is why Gloria is my new role model as I wiggle around the truth of my identity.  In Him, my heart is safe and my life written.  Won't you please pray for me as I slip into much different shoes than I once wore?


  1. I won't lie to you. I've avoided coming here for a long time. Something in what you say always tugs at heart strings I don't want tugged. For a long time I've been selfish in my feelings and slack in praying, so to visit this page would bring me face to face with real need for prayer. This week I realized I'm so blessed with so many things but I have chosen to dwell on the ugly parts of my life. I have not been the spiritual leader my kids so greatly need. I don't know why I read your post tonite but there it was. I will pray for you and Dan and the girls. I will pray because we have an awesome God who is in control. I can't imagine the place you are in physically, I'm at a loss, but I know God knows your families needs. My aunt is always telling me she doesn't know why God chose for me to raise these kids alone but she knows He has a plan for us. It's not for us to see the end. We are just passing through. I have looked at my life at the worst moment and said this is what God has given me, refusing to remember the blessings and failing to see His promises. Tonite, as I read your post I remembered. I will pray and Christ will go before the thrown of God on our behalf because He said He would. I know this is a grammatical mess but I don't care. God bless you and your family old friend. Andy

  2. LOVE you sweet friend....and praying for you always! xoxo