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The Storm in the Story

 

I fear I’m becoming more and more like my grandmother as I pepper every conversation with thoughts about how fast time is moving.  But it’s true.  I can’t believe it’s June and I can’t imagine where the first half of 2013 has gone.  For me, it’s been consumed with three main things:  book promo, ALS and ALS.

 

ALS gets to count for two things because it requires double the resources that anything in life ever has or, I suspect, ever will.

 

The past two months in the land of ALS have been difficult, draining and honestly, unlike anything I’ve ever experienced before.  Steve finds himself in a season in which nearly everything he does requires herculean efforts, most especially – breathing and eating.  Consequently, he has to fight for every scrap of emotional fortitude in order to keep himself on top of the wave instead of underneath.  It’s incredible and awful to watch.  I can’t begin to articulate how much I feel A) impressed and in awe of the man I married and B) utterly inadequate to be all that he needs.

 

I’ve never had a front row seat to a battle of this magnitude and, I don’t want to be dramatic, but I can tell you that I hit a point about a month ago where I realized: I am being changed by this.  I’m being changed in ways that are wonderful and ways that might need a little healing when we get to the other side, but I know with certainty that I am not the same girl who went into this war three years ago.  I know my thoughts sound a bit murky and that’s only because they are.  I’m working very hard right now to sift the gold from the chaff, the beauty from the ashes.  Some days it’s easy.  The strong stuff rises to the top and we float with it, immersed in the wonder of being held by a God who has not abandoned us to this process.  We feel His life surrounding, keeping, sustaining.  And some days finding the beauty in ALS is like walking uphill through quicksand.

 

And herein lies  the conundrum at the heart of my writing life:  how much do I focus on this disease and how much do I try to dodge and weave it’s reality?  Because in the beginning, I thought I could. I thought I was able to pick bits and pieces and sew stories out of other, more beautiful thread.  Thread that is easier for people to read.  Thread that might possibly make my life look prettier and more together than it is.  But now I see that a neat compartmentalization of this battle is not just difficult, it’s impossible.  My life is sewn with two colors right now and not just one.  This one thing – this steady erosion of my husband’s strength – is packaged up with everything else.  It’s the pop-up at the bottom of the tv screen (boo!), it’s the flavor in the soup that you just can’t seem to shake, it’s your neighbors wind chimes that sometimes are less-clangy than others, but you always know they’re there.  It’s our reality and reality for us has gotten pretty noisy and bossy in the past few weeks which means that I can write airy sentences about graduation or summer or how I really love my Nutribullet (I really, seriously do), but all those words are weighted with anchors, keeping them tied to the shore of this new reality.

 

And so sometimes I worry.  Not for me, because writing is cathartic for me.  I worry for you.  I worry that the people who love us will grow weary of this war and it’s sorrow.  Our hope has been to bring awareness to a disease that so few people ever see up close…and so I think I’ve tried to put the best face on it, lest our story becomes just…too much.  Too sad.  Too long.

 

But real is real and life is life and God is either good in the Too Much or He’s not good at all.  And I can tell you:  He is.  So good.

 

I recently read a quote (and I’m too lazy to look up the author, but I’ll tell you it wasn’t me) that said:  we are not as those to grieve without hope, but we are not as those who hope without grief.  It’s exactly right.  Hope and grief for me right now are my inhale/exhale.  They are the one-two punch that drives me to the one true Source of everything.  And I hope that our story – our real, true story – moves you to Him as well.

 

 

June 18, 2013 - 7:39 am

Sandi Hull - Bo,
I hear what you are saying, but please be encouraged that your story is important and needs to be told. The good, bad, and ugly of it all. Some people may feel it is too much for them and can not watch and listen to all you have to say, and THAT IS OK! Keep telling your story…for you and for us! You have a huge army of people who love the Stern family, and will walk thru the highs and lows with you and not grow weary of the not-so-pretty days! You said it: God.Is.Good. We all need that reminder for our lives ebb and flow with ups and downs as well. We just don’t have the gift and/or platform to share it with others, but the story must be told. You are beautifully gifted for this purpose. I pray that today your moments are filled with more gold and beauty than chaff and ashes.

June 18, 2013 - 7:51 am

Bre - Bo,
Keep writing and keep speaking truth. Real truth is transparent and its often soggy and messy and sad. The beauty of the Truth is the Hope. People need to hear the story of Faith and Hope and Love in the midst of the storm. It’s what keeps us moving forward, even if its inch by inch. Thank you for your voice and God’s story of His love through you and your family. He draws us near to Him to be the only source of comfort throught the transparent truth of the stories of our lives. Thank you

June 18, 2013 - 7:57 am

kathy - <3 that come together will carry us through.

June 18, 2013 - 7:58 am

kathy - Hearts that come together.

June 18, 2013 - 8:04 am

Joan Zeller - Never tire from your “story”, Never tire from your transparency, and never tire from your truth which God has so incredibly gifted with. Many of us have not had the privilege of walking a loved one to heavens gates, heavens finish line to a greater life, knowingly. Steve is our “Olympian” running life’s race, and we are fans who are cheering you and he, and Team Stern. We will forever be teammates, cheering, and forever be on your team. So, so love you Bo.

June 18, 2013 - 8:21 am

robin medford - We will be standing with you to help lift up your arms as you fight for healing. My husband and I have had the opportunity to care for a dear friend who fought for life from ALS… We are deeply aware of what you are going through . We will be contending for healing along side you . It will be my Joy…. much love in Christ … Robin

June 18, 2013 - 8:59 am

Jalet - The 23rd psalm was not written by a guy puny little whimp of a guy asking for pity, but by a mighty warrior who was tapped out. David was not trying be look strong as he poured himself into verse, at a time when life had been sucked out of him like someone had used a vacuum sealer on his spirit. He was hanging on and holding it together by the broken black and blue mismatched thread in which he felt loosely sewn together with. He is real, he is transparent, he is at the end of himself as a mighty warrior, and left clinging to God, yet somehow finding his renewed strength in the emptying of that warrior.

Your battle, your writing, your mismatched black and blue broken thread, that is somehow holding you together, is God in your story. It is God in all of our stories, but you are brave enough to be transparent, and yes, somedays to worn out in the battle to hide your weariness. It is ugly? Yes. It it real? All to real, but it is indeed a story that is punctuated by hope in God, and giving hope to those who are struggling in a battle is the most Important gift. I value your honest look at the beast ALS.

I find strength in the way you turn to Jesus for rest, peace, hope, quiet, and yes, even some distraction from the noise that is the clanging gong of ALS. You do not see yourself as a mighty warrior, but I know you hourly must choose to put on the full armor of God to survive. May His breastplate protect your heart as you steel us you readers for battles of our own Bo. His message of hope to the hopeless is tireless, and you consistently deliver the message of hope in Jesus to your readers. We value that in you; unseen, undone, mismatched black and blue thread, or not.

June 18, 2013 - 9:23 am

Julie - I’ve never read about a battle that was pretty. I have never lived through a battle that was pretty. It is just a reality that during any battle you get to the point where you are just sick of the loosing, sick of the weight of it, and you end up feeling like a boxer who is totally without any more strength…and has 6 rounds left to fight. That is reality. The other reality is that when you are in this battle God will continue to supply what you need. You’ve said best, “EVERY MINUTE”. I know there was a deep part of me that wanted to do all this suffering “right”. I found there is no RIGHT way. The thing is we are all just human and we will fail, we will stumble, we all say things we wish we would not of said, we don’t say things we wish we would of. I had great guilt about my failures during my battles. It was God in his loving kindness that taught me to accept my shortcomings and move on. He had already forgiven me and now I needed to forgive myself. (that sounds really neat and clean written hear but it was NOT!)

The other thing is this…you probably will tire some people out. You might find people dropping from your friend list. I did. If this happens, you know that your heavenly Father loves you and he will provide the support you need as you go along. EVERY MINUTE. One of the books I read about raising a special needs child warned me of this. When it happened God gave me the grace to realize that others were just in a different place then I was. (ok that wasn’t easy either…..lots of work going on here!)

It is a painful road. Your being willing and open to share your pain along the way sheds a ray of light into the world of those who suffer. Your story helps others to understand what suffering is. You are impacting lives for GOOD Bo Stern.

June 18, 2013 - 9:29 am

Doris - Dear Bo, You are not the first to write the good, the bad, and the ugly, if you remember all through God’s Word, He has written the truth, with all it’s ugly parts and all it’s beautiful parts. The road through disease any disease, but especially one that you know is not going to end well has it’s very ugly parts. This one thing I know when you get out the other side you will cry a lot and you will laugh a lot, over some of the silly little things. I walked with my daughter through aplastic anemia in 2007-2009. When the end came there were many tears but there were also those times of joy for the life we shared and celebrated. We laughed at some of the silly things and cried at some of the silly things too. The pain was incredible but we have this AWESOME GOD who walks with us through the valleys of death as He has walked there before us with His beloved Son.

I know this has gotten long but I just wanted to say, never stop talking and sharing the journey. I have shared my story many times and have touched many people with it. You are touching people that you will never know.

God’s blessings on you and your family,
Doris

June 18, 2013 - 10:13 am

jacquelyn strayer - Bo…..please be free to rest. I don’t have fancy words…
I ache for you to not have to write if you just need to be free of that. Let it be a vent… but please don’t worry for us.

June 18, 2013 - 11:49 am

Molly - Too long? Too sad? Too real? Never. We feel as though we have missed most of it…like we might the most important of it….like we might not be changed enough by it!! Our pain is not BEING there to face it with you….so write on, my dear sis! Write on! It’s the only way we share in it with you. We need you. We love the real, long, sad, true grit of your storm in the story!!

June 18, 2013 - 12:25 pm

Tammy - I agree with Molly. Those of us who love you strain to hear any whisper of how your family is doing, be it good or bad. If we don’t know the difficulties you are having, how can we be adequately supplying your needs? I know that when I only hear that everything is coming up roses, there is something that isn’t being said, because that isn’t how this ugly disease works. Lean on Team Stern. That’s what we’re here for!

June 18, 2013 - 12:28 pm

Teresa Brown - Your friends will never say it’s too much or too painful. We are with you through ALL of it! Your story and inspiration have helped many people and I know you’ve inspired me in more ways than one. You just keep on, keep on sister because you know He is by you and so are we!

June 18, 2013 - 12:28 pm

Linda - Bo,
I am changed also. I worry that people will get tired of everything ALS. But I worry more that people don’t know ALS. It impossible to go through this and not be different on the other side. I just pray that I will continue through with grace. I am blessed by your words and I am so grateful I found you.
Bless you my friend,
Linda

June 18, 2013 - 1:59 pm

Jane Williams - Bo, try to be worried for any one of us that follows after your grief. We are not following after you. We are not looking for candy-coated hope that looks pretty but tastes processed and fake. We are looking for the Real One in all that is brutally real, and the Living One in all the that is wholly alive… We are looking for a God that is big enough to hold our Too Much in His hands, and our broken pieces in His heart…… and that, dear Bo is Who you and Steve and your family are showing us. It makes me want to say “I’m sorry” that we need to learn, “I’m sorry” that we don’t know these lessons well enough. Maybe if we didn’t need to learn – if we knew them well enough — then maybe, you might be spared the job of being such a stinkin’ good teacher… I know that’s all silly talk, ……. but still…… I’m sorry, and thank you, and please, we don’t always need to see your ‘best face’ on this ugly monster anymore, (for one, he’s obviously getting uglier, and two, because seriously your ‘best’ face –made-up, pimply or drained — is simply the face He shines on. And he’s shining bright, Bo…oh, so bright.

June 18, 2013 - 2:27 pm

Annette - Bo,
We will never grow weary of you and your war with ALS. We all have battles and we need to count on each other. We love you.

June 18, 2013 - 2:28 pm

Valerie Caraotta - Bo,
What makes your blog all the better is that you are transparent whereby many refuse to be. In the midst of pain and transparency many of us strive to get to the point where we can be comfortable enough with ourselves to expose our pain and vulnerabilities. It takes incredible courage and don’t think for a minute that this, in itself is not a life lesson for all our “pretty selves”. Yo too teach us that leaning on Him is good, but that our humanity requires we lean on one another, cry unabandoned, and not be ashamed of any of it. That, my dear takes raw courage, and you have it. Our hearts desperately cry with you but too do we know that His Grace will do things as this journey continues that will bleed a story of His goodness right in the center of the pain. Our prayers ring strong on your behalf.

June 18, 2013 - 2:41 pm

Karen Styer - Bo,
Although you and I have never met, I do know your husband’s family and we also have some mutual friends-one of which is Julie Creek and I know Kelsey’s story(.I am Julie’s Aunt Karen)When I was reading the storm in the story one thought filled my mind and that is this….we all have our storms in life;sometimes that is the only thing that makes us human and is what makes us pray and ask Our Father in heaven to make our path through the storm as smooth as possible.As He makes our way smooth(or at least able to go through) I believe He also gives us the ability to share the voyages with those whom He puts around us for love and encouragement.And from my heart to yours Bo—I believe that He puts within all of those who seek Him and His wisdom the ability and compassion to understand the path we are on and that He gives us people who are with through everything….God does and will provide all we need,

June 18, 2013 - 5:23 pm

bo - Dearest Linda…your heart and attitude humbles me. I cannot imagine walking your road and I watch you do it with such grace and dignity. Please know you’re making a difference in my life and in a world that, yes, needs to know about ALS and the way it wreaks havoc on the very best people. So glad for our friendship. Praying for you always.

Bo

June 18, 2013 - 5:36 pm

Vicki - Bo, I never tire of hearing your story. Ever. In fact, I check your blog several times a week just to make sure I don’t miss one! The truth of it is I hang on every word, and I, like most of your other readers, watch closely as you tred waters we all hope we’ll never have to. But we know we have your instruction manual if we do. So please keep writing and sharing your journey-, if for no other reason than it helps us know specifically how to pray for you and your family.

June 18, 2013 - 6:41 pm

Jane Lellman - Bo, I thank you. It helps so much to read about your experiences, thoughts, feelings…..I had a sense almost at the start of our ALS journey that some of what was experienced would require special healing on the other side. So grateful for you. Please know I am praying for you and Steve.

June 18, 2013 - 7:26 pm

bo - Wow – everyone – your comments are so beautiful and encouraging. A million thank you’s.

June 18, 2013 - 8:19 pm

Jean Nelsen - Bo, I don’t know you very well, but I can tell you that even from that perspective, I love your transparency. I can’t say I “know what you are going through” because I don’t. But many of the feelings you speak of resonate from when my father committed suicide. Quicksand. Hope and pain mixed up. Fear and faith. God. Is. Good. What you are doing and saying is helpful hopeful and never too much. Love you so, from afar, Jean

June 19, 2013 - 2:13 am

Jenni - Bo… Please don’t stop sharing the truth in your battle story. I do not have words to say how much you are being used in my life as I face my own battles.

You spoke at our women’s retreat in April (MSCC) and right before the retreat I heard a song by Tenth Avenue North – Worn. We sang it at our retreat… so powerful!
I think of the story – your life – you shared with us whenever I hear this song…

“Let me see redemption win!
Let me know the struggle ends… that you can heal a heart that’s frail and torn.
I want to know a song can rise…
From the ashes of a broken life
And all that’s dead inside can be reborn.
Cuz I’m worn.”

You are prayed for!
Jenni

June 20, 2013 - 3:20 pm

Marie - Hi Bo
As one who has adult onset Cerebellar Ataxia,I just wanted to reassure you that your blog is your voice and you have put into words that which I have felt.
Marie

June 23, 2013 - 4:12 pm

Alice Klenski - Bo,I have attended Westside church for more than 20 years but have never actually met you.I have been so sad for you and your family and prayed for peace and comfort for you all.My family just received the final diagnosis of my sons illness and it is ALS.I just read your comments on your blog.It gave me some idea of what we will be facing.There are no words to describe the sorrow but we know our loving God will not give us more than we can bare. Prayers and peace for you and your family.

June 26, 2013 - 8:04 am

Barbara - Thank you. I needed those words today.

June 28, 2013 - 1:15 pm

Dotty Young - Bo, I just heard about your book and your battle today. I will pray for you daily–thank you for the encouragement you gave to my heart and to my family as we face our own battles.

Comments on another post that blessed me were closed, but if it’s ok, I’ll mention it here: THANK YOU for posting about your theological journey on women in the church. I actually come from a home where feminism was abused to such an extent that I swore I’d *never* be a feminist. I swore I’d be a completely submissive wife, never question my husband, and be a perfect housekeeper and mother.

Ten years later, I’m called to worship ministry….?

Over and over and over again, God keeps calling me out of the darkness and into His marvelous light. THANK YOU for sharing this journey with my family, so that we could see that we’re not blazing a trail on our own. Thank you for sharing the joys and sorrows. We need to hear them all.

God bless and equip you,
djy

June 29, 2013 - 7:44 am

Barbara Long - Yesterday, I brought my strongest-man husband home from the hospital after having a DPS implanted. This tangible next step in the ALS battle threatens to send my emotions tumbling into the pit but God. His word, prayers of the saints, your book, your family’s struggles, are all a part of His hand holding me from the dive. He is faithful.

We came home to a lovely meal from one part of a large body of support but I too worry about exhausting our loving support with the hard sad reality of this battle. I totally understand your concern but as I took a moment this morning to enjoy the quiet of being home, I watched the YouTube video of your speech to the ALS Association. Once again I realized how parallel our lives are and thanked God for the voice He’s given you. The Stern family story is God’s story and no matter how messy it is He’s equipped you with a gift of words to share the ugly reality of this horrible disease.

The day after surgery, my best friend hubby said he felt like he was drowning. I felt like I too would drown and walked a fine line strengthened in my weakness by my warrior Jesus and wanting to scream my fears. Respitory issues are ugly truths but the reality of ALS patients and they need our voices to advocate for their cause. I appreciate all God is doing in and through your family. I pray for you as I struggle on my own battlefield.

We’ve had lovely stormy skies here in North Carolina this summer. I’ll leave you with a quote from my youngest of three daughters, (my boy is the oldest): “We face a beautiful storm, but a storm non the less.” 2 Corinthians 4:7-18. May The Lord continue to give you words to describe the storms this unique group of citizens face.

June 29, 2013 - 9:15 am

Bo - Barbara – thank you for your beautiful words. Yeesh…this ALS battle is like waves from every corner of the ocean sometimes, isn’t it? Please keep me updated on how he responds to the DPS. Bless you, friend.