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The Dangers of the Battle Bucket

 

I think one of the most dangerous consequences of any fierce fight, is the way it shrinks our vision to primarily the soil of our own battlefield.  Sometimes I feel that if I’m not careful, I’ll get stuck inside an ALS bucket, where our issues are the issues.  It’s like living inside your own, personal 24-hour news cycle and all the stories are about medical stuff and caregiving stuff and insurance stuff and sorrow stuff.  And it can happen with any fight we face. I’ve known people who can’t last six sentences in conversation without mentioning the ex spouse who did them wrong.  I totally get why this happens, but I firmly believe I need to work to get rid of the dumb bucket rather than justifying its existence.

 

This is a challenge in blogging. Writing helps me process what I’m experiencing and connect some of the emotional dots. It also creates camaraderie between those going through similar situations.  I don’t think writing about our war is wrong; I just want to be so careful that I don’t become confined or defined by it.  While people often tell me that what they’re going through is nothing compared to what we’re going through – I actively and aggressively resist that idea.  The minute I begin thinking that I’ve drawn the worst hand available, I am just one short hop away from life in that bucket, where I am all that matters.  And…ew.

 

This morning, I read an article about the girls who were abducted in Nigeria.  And I read this strong piece from Sarah Bessey about the issue of sexualized violence.  Then I read a letter from the child we sponsor in Indonesia so she can attend school, and had so much  fun writing her back and sending her some Christmas money.  My coffee money for one week is her Christmas.  Her entire Christmas. I mean, l this is a child  – a real child with hopes and dreams and gifts an fears – who cannot attend school without the help of strangers. These are global issues.  Moral issues. Issues embedded into the fabric of our society that rampage and ravage tender hearts and innocent lives. We cannot support every cause or defend every victim, but I cannot live in a world where the only victim is me.  My life is hard, yes.  I’ve written about a million words on the nature of a villain like ALS, and I’ll write more.  But as I’ve also been processing burnout, I’m seeing that one of the best ways to stay clearheaded in crisis is to realize there’s a world beyond your war.

 

I cannot escape the battlefield of ALS.  It is the ground on which I live and fight.  But I will resist until my dying breath the natural tendency to build walls around my battlefield, that shut up our hearts and our compassion and our righteous outrage toward social injustices on the global stage.  This is not just right, it’s good. It’s good for my heart and my outlook.  It’s good for my family and our army.  It’s good for my future and it’s good for the world that God so loves.

 

Feeling stuck in a bucket today? Push your vision out beyond your playing field and gain some quick perspective.  And then do something.  Pray, send money, send a note, send hope.  Make a move in someone else’s war and see how it changes the landscape of your own.

 

With hope,

 

Bo

October 29, 2014 - 9:18 am

Dora - Oh, Bo, I so needed to hear this. Sometimes I feel trapped in these ALS walls and have to try really hard not to be resentful of those who are going merrily along their way having a wonderful life. I realize I don’t need to explain to people why my husband is in a wheelchair and/or can’t shake their hand. It’s not about ME and wanting sympathy! Thanks for sharing this much needed perspective.

October 29, 2014 - 12:07 pm

Susie - amen, Amen….AMEN!!! Bucket or not, we must stay relational – it’s how the Father made us.

18 Hours: Taking a Break from the Battle

 

Yesterday I explained in this post how I found myself face down in the Land of Burnout and how that admission led to the chance to get way from home for a night and think and breathe and, most importantly, sleep.

 

I woke up on Saturday morning nearly bursting with excitement about my upcoming adventure , but –  as with any big attempt at escape – there were some serious obstacles between me and my front door.

 

Obstacle #1: it’s a lot of work to leave.  I made lists and lists for my family who would be caring for Steve.  When and how to give meds.  When and how to move him from bed to wheelchair to bathroom, etc.  How to get through the night. So many lists.  Having made the lists, I did a some cleaning and sheet-changing.  It’s just a lot of work to leave the house and Steve, when someone else is going to be stepping in to my spot (but I’m not complainin’ – it was every bit worth it.)

 

Obstacle #2:  This is the big one. The bad one. The one where I thought for sure my survival getaway was teetering on the brink of disaster.  My sewer flooded.  Not even kidding.  This has happened about a half dozen times in the past 13 years – so it’s not a regular occurrence, but it is a wretched one. Think:  raw sewage flooding the floor of my laundry room.  My heart sank when I realized what had happened. I can ask people to do a lot of things for me, but I cannot ask them to clean up raw sewage. I don’t feel I can even ask my kids to do that.  It’s just…beyond.  Beyond the boundaries of favor-asking. I’m not proud of the text I sent Whit, but I’m going to share it with you so you understand my mental state at the time:

My sewer just backed up again. No breaks. No breaks whatsoever in this dumb life. 

 

Do you sense a little drama there?  I assure you, I felt every inch of that despair.  At the same moment of the sewer explosion, Steve had an urgent need and so I went to help him and I could not stop the tears.  It was just the worst moment. And I know he felt every bit as bad as I did, but he had no words.  He just shook his head sadly.  I often forget how hard it would be to feel like you cannot help the people you love – especially for someone like Steve, who has always lived to help the people he loves.  Truthfully, I don’t actually forget; I just try to block those ideas from my mind because I can’t even bear to think about all my husband is losing in this process.  I went upstairs to change from get-out-of-town clothes into muck-out-the-laundry-room clothes,  but Tori followed and sat me down and said this life-changing thing to me: “You need to leave.  Right now. You need to grab your suitcase and get in your car and go.  This is not your problem, it’s OUR problem and we can solve it without you.”   I protested weakly and she put on her firmest voice and said, “Please don’t take this wrong, but we are already losing one parent, we can’t lose two.  You need to leave and let us deal with this.”

 

And I felt a flood of gratitude and relief so great I cannot describe it with words.  So I did it.  I left.  I left my disabled husband and children sitting in a house with fundamentally yucky problems and I got the heck out of Dodge.  This would not have happened four years ago, or four months ago or even four weeks ago.  Until I reached this level of desperation, I would have let the obstacles win.   I would have said, “Not gonna work this weekend.”  I would have felt noble and strong.  And I also would have secretly resented all the weight that fell on me and no one else.  And that resentment would have led to…oh, okay – I guess we’re caught up now.

 

I drove to Sunriver in a literal and emotional fog. First I turned on some music, then I turned it off and then on again. When I got there, the skies were pouring rain and it felt just like my heart.  I checked into my room, turned on the fireplace and sat staring out at the meadow and mountains for I-dont-even-know-how long.

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View with a room.

 

I fell asleep on the bed at 4 in the afternoon.  I woke up and left long enough to grab some dinner at a wonderful brewery and bring it back to my cozy room.  (Interesting: I told Steve as I was leaving that the one thing I didn’t feel ready to do on my own was eat dinner at a restaurant.  I can do breakfast or lunch.  And I can stay in a hotel room alone.  But eating by myself at dinner, with all the couples on dates and families on vacation?  Nope.  Not yet.)  I know that pictures of food are boring.  And I know my steelhead sandwich means nothing to you.  But still…I have to memorialize the beauty that was THIS SANDWICH.

 

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Because Oregonians love steelhead.

 

 

After dinner I did a lot of nothing. I read a little and watched some really silly TV.  I mean, QVC at 5 in the afternoon?  I have no explanation for this except it was something that required no brain activity on my part.  Upside: if you’re in the market for a VitaMix and need to know the five colors available, I’m your girl!  I fell asleep a lot of times for little bits of time and come 9 pm, I decided it was time to do some processing (and this is the paragraph you’ll want to skip if you do not share my faith.  Or you can read it.  Just don’t say I didn’t warn you.)

 

I prayed and read and thought and, slowly but surely, I felt some layers falling off.  Layers of grief and anxiety and confusion…just sort of falling there onto the floor of that pretty little room. I believe so strongly that our Good Father showed up to help shine a light into the murky, hurting places of my heart and reveal some ways I’m not seeing straight.  I thought about sharing with you what those revelations were, but in the end decided it was enough to say: He came.  He spoke.  I heard.  And it changed me.  Really…it changed me.  I woke up the next morning feeling differently about my role in this battle.   And I just need you to know that getting away – in and of itself – would not have been that effective for me long-term because my responsibilities are still here when I get back.  But getting away and experiencing this intersection between my pain and His purpose was really, really important. And it will impact the days and years to come. That’s how powerful it is to place our hurting hearts in front of the One who can actually heal them.

 

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This is how crazy things got

 

I went to sleep and it would not be an understatement to say: I love sleep.  Really, really love it. But I kept wondering how Steve was sleeping at home and wishing I could know for sure he was okay. That doesn’t make me feel sad or sorry; it just makes me feel married.

 

In the morning, I woke up early and read my Bible by the fire looking out on SNOW! So pretty. Such a fun gift.  I took a long time getting ready, had a beautiful breakfast in the lodge and then went to church and worshipped with the people dearest to me.

 

All in all, my short getaway was beyond what I could have asked or imagined.  It both emptied and filled me.  It freed me and firmed my stance.  It was a game changer.  A million thank you’s to my kids, my sisters and brothers-in-law and all the friends who have made our lives possible for four long years.  We are humbled by your care and determined to some day pay it forward.

 

If you are a caregiver can I implore you: take some time away to refuel?  It’s the best thing you could do for the one you love.  And if you know a caregiver, this is a good time to think about ways you could help make a little escape possible for him or her. As the holidays near (yikes!) I’ll be sharing lots of practical ways you can bless the people around you who are facing a difficult battle.

 

Finally, let me say:  your outpouring of love and support yesterday was a marvel to me. And the emails I received from other caregivers – well, they’re tender and priceless and I cherish them.  Thank you is the smallest and biggest thing I can say. I love you.

 

With hope,

 

Bo

October 28, 2014 - 11:33 am

Michaela Evanow - Would it be weird to say I cried reading through this? I did. I am so happy this happened. And I myself am taking some deep breaths with you. I can practically taste the steelhead. And feel the snow laced air. This might be the kick in the pants I need.
Proud of you.

October 28, 2014 - 12:11 pm

Richard - Praise God from Whom ALL blessings flow, both obvious & oblivious! And, thank God for friends, family, and you! I am profoundly moved, and eternally grateful, for your witness of the love of God, and the love of family. Thank you for the candid sharing & open vulnerability. Praying for complete healing for Steve, and God’s will for your family. Richard George @ HCC

October 28, 2014 - 12:12 pm

Teresa - Thank you for being vulnerable & bringing joy to others.

October 28, 2014 - 12:21 pm

Teresa B. - That is one awesome looking sandwich. This sounded like the perfect getaway. And bless Tori for shoo-ing you out the door. I smiled reading this, knowing you were peaceful there in that little hotel room with your sandwich, QVC, and M&M’s.

Recharging our batteries is something we ALL need to do, especially on the wake of burnout. I have to tell myself the same thing although I don’t have nearly the load that you do.

Praying continually!
Teresa B.

October 28, 2014 - 1:04 pm

Susie - Praying that this is only the beginning of YOUR respite care!

October 28, 2014 - 1:50 pm

Jalet - Even a cell phone has to be recharged to be effective, otherwise it is simply a paper weight. If a cell phone has some small change but no connection…it is a paper weight.
I am relieved to hear that you took wise council and both recharged and found connection to your high tower. Bo you are loved not only by those connected to you, but by the most high God. Thank you for knowing and finding where your strength comes from. Your children have been mentored once again, by a momma not born of perfection, but struggling to love perfectly.

You mother many of us who find ourselves in a struggle so consuming, we can only hang onto the hope others find first. Thank you for sharing so transparently, your hope.

Therefore encourage one another and build each other up. 1 Thess 5:11

October 28, 2014 - 3:38 pm

Helen Campbell - Thank you for sharing your hardest times. You are very courageous to entrust your story, pain and love with so many. May you be blessed beyond measure.

October 28, 2014 - 9:19 pm

Jody Collins - Bo, I had the privilege of sitting next to your unassuming, smiling (yes!0 husband at The Well conference last May and remember meeting you afterwards (friend of Gwen’s–that’s me).
I have followed your journey from afar and been reading in the background about your journey.
I’m so proud of you……..Jesus is so good. Thank you for your vulnerability and your encouragement to others.

October 28, 2014 - 10:23 pm

Jewl - Dear Bo,

I love your blog. Perhaps there’s a link because I too am a INTJ. We’re all made to process things–perhaps us more than most. God spoke to me also on my own getaway this past weekend, and I wasn’t as desperate for that time away as you! I can only imagine how constantly interrupted sleep and more than full days would break a person. Being several states away, I watched my stepmum care for my dad with his Alzheimer’s which also included long days and fitful nights spread over several years, and that care was something to behold. She had help too. I’d been sensing you were coming to this. I’m thankful for your getaway and for a God who can move mountains in one little 18 hour break! I know it won’t be easy, but I pray that God leads you to a plan for some more on-going help.
I signed up to get your blog, but don’t get e-mail prompts, so I just look you up periodically, and it’s usually just after you’ve posted, which shows how God prompts people to pray. May God give you rest in Him even in the battle.

PS I think a lot of your Steve just from your words about him. What a great guy! Thank you for loving him well. You’re STILL the one God intended for him. :-)

With hope with you …

October 29, 2014 - 5:58 am

Sherree - The place where Jesus lives in you is a spacious habitation. Your suffering has created such a beautiful home for Him. I see the strength you draw from Him. I understand that it’s the only way you can function; it is so rare, so beautiful to have cleared out so much of you and made such a lovely place for Him.The truth of his purpose intersecting with your suffering is really good. Thank you for sharing.

October 29, 2014 - 11:05 am

Kathy Gilbert - Yes. I am saying “ditto” to Michaela Evanow, the first one to comment here. What she said, …me too. I just want to say thank you, Bo. Thank you for writing such precious and powerful words for us to read. I am sending much love and praying that Jesus will surprise you with amazing personally crafted blessings in this next season. Jesus, please intercede for all involved here in these precious words written by Bo; I pray that You would bless each one and that our faith would rise up to meet the challenges of this short and amazing life You’ve called us to live with You in mind. AMEN

When the Caregiver Breaks

 

Somewhere in the hazy fog of the past crazy week, I came to a realization and it is this:  I have become exactly what I planned never to become.  Well, let me rephrase that:  I have become what I hoped I would never become.  Had I actually created a plan to not become it, I would not be in this pickle now (wherein pickle is defined as: teetering on the ragged edge of burnout and meltdown.)

 

In the beginning of this ALS battle, countless people warned me:  you have to take care of yourself, too.  And I nodded in agreement – and I mean real agreement, not that condescending, falsely humble, “Sure, friend, thanks for sharing that piece of advice that I will never actually use,” agreement.  Not, “Yeah, I already know this stuff and have it dialed,” agreement.  I knew going in how important self care would be.  And the thing is: I do actually like myself.  I’m neither martyr nor masochist.  I do have some INTJ-related workaholic tendencies, but I can down-time like a champ when I know I need to.

 

So this is the week I’ve been forced to ask the question:  how did I get here?  How did I end up in this ditch of discouragement and numbness and frustration?  The answer is clear and you’ve probably already guessed it, but the reason behind it is sort of funky.  I am in this emptied-out place because I have not asked for enough help.  Bottom line, Steve’s care has grown beyond my ability to handle by myself.  I have been away from him six nights in 2014  – all for ministry trips – and in the course of those six days away from home, I have spoken twelve times.  The trips have been excellent, but they haven’t been relaxing.  In July, our lives changed dramatically as ALS took center stage and began to eat away at our nights, stealing the precious, replenishing resource: sleep.  (Seriously, if you have access to endless nights of uninterrupted sleep, take a minute and thank the Lord for this great gift.  We take it for granted so much, but it is an essential foundation piece for every other thing.)  (Did I sound like your mom just then?  Sorry.)

 

As the opportunity for sound sleep ebbed away, so did my ability to think clearly, process cohesively and maintain even trace amounts of the me I used to be.  Not that the me I used to be is so special, but there is something about pre-ALS Bo that I miss and longed to reconnect with.  The other thing that crept in not-so-subtly was a reluctant resentment toward these responsibilities and ALS and life in general.  I’m not proud of this, but it is what it is.  Instead of examining the resentment and dealing with it, I would just beat on it with the Guilt stick.  I addressed my need for a break to breathe by reminding myself (see mom voice above), “STEVE doesn’t get a break from ALS.  You’re fine.  You’ll be fine.  You’re not losing your mind.”  Except I sort of was.

 

The main reason caregivers burn out is a reluctance or inability to get the help they need.  The reasons for that reason vary wildly.  Some cannot trust others with their loved one’s care.  Some feel guilty, like they’re handing off their problems to other people.  Some don’t think their spouse would be open to anyone else caring for them. And some, quite simply, don’t know who they could ask.  While these are all at play in my situation, they are not my primary issues.  My issue is this:  I am lazy with myself.  And I have reached levels of exhaustion where the idea of making another phone call or teaching someone how to take care of Steve feels like way more work than just doing it myself.  I have made some half-hearted attempts to find help at night, but as soon as it doesn’t work out I give up and crawl back into my hole of despair.  And honestly, I think this is the issue for many ALS spouses (and all others who care for the terminally or chronically ill):  they don’t want to go it alone, but they are too deep in to be able to work their way out.  Their community of friends and family watch helplessly, not knowing how to intervene while the caregiver insists she’s got it covered. She doesn’t.  She just doesn’t have the first idea about how to plug people into the holes that she has been filling for so long.

 

So, back to my story: Long night after long night culminated in a meltdown at the breakfast table one morning with my daughter, Tori.  I have been reluctant to share how I’m doing with my kids for fear they would be overwhelmed by it and feel like they have no fully functioning parent in their lives.   On the contrary, that beautiful girl spoke strength and wisdom into my heart like none other.  She preached at me.  She comforted me.  And after that, Whit called me to let me know that my sisters and brothers-in-law were coming for the weekend so I could get some sleep and do something fun like…leave the house.

 

I’m not ashamed to say: I cried like a silly when I got that news. And that’s when I made a crazy decision and sent Whit a text:  “Would it be bad if I went away?  Like away away?”  I knew it would be tough to step back and let this (very capable) crew step in if I was on the premises.  I knew I would not be able to show someone else how to empty the suction machine if I was there and could just do it real quick. I also knew that if my sisters (who are my very dearest friends) were in my house, I would spend all my time talking to them and zero time on the processing I knew I really needed.  For several weeks my dearest dream had been to get a hotel room and sleep and think and cry and be.  But I was worried.  I worried about how Steve would feel when I told him I was leaving just to leave.  I worried it would look like I was running and, candidly, I care more about what the watching world thinks than I should.  I’d love you to think I’m awesome and strong and I would have kept this whole little thing a secret, except for one thing:  the other caregiving spouses out there who are breaking beneath the weight of their load.  Many of them read this blog and I cannot afford to show them a painted-on, propped-up version of myself.  If I pretend that I don’t need help, they will feel guilty and weak when they do.  And they do.  We all do.

 

So, that’s the backdrop for what would become one of the most wonderful 18 hours ever.  Since I’m already over 1,000 words, I’ll save the trip recap for tomorrow, but check back in because it’s very cool. And also?  I’m writing this post at the breakfast table from my favorite lodge in this whole world and I just wanted to flaunt that information for a second.  In two minutes, I will pay my bill, get in my car and drive back to my life and the man I love more than any human on this planet.  And I cannot wait to see that wonderful guy.

 

With hope,

 

Bo

 

 

Dear readers – this post was hard to write and hard to publish. I’m trusting you with the depths of my heart here.  Often when I post things like this, I hear from people who cared for their spouses brilliantly until they placed them in the arms of God.  Sometimes the emails are a bit corrective to the tune of “I loved caring for my husband and I wish you could find it in your heart to love it too.”   Please know how deeply I love Steve Stern and how committed I am to walking this road with him.  This is unchanging.  But the level of caregiving required is overwhelming sometimes and I feel quite hopelessly unqualified. I have heard from countless caregivers who feel the same way, but are reluctant to say it in public for fear people will label them harshly. I am only opening up this tender terrain so those who care for the caregivers can understand some of the things that go on in our complicated lives and so the caregivers who are feeling desperate will know they’re not alone. While I’m open to feedback, I would respectfully submit that we all process a battle of this magnitude in different ways and there’s no one way that works for everyone. So I guess I meant to say:  I’m open to feedback-fueled by grace.  Thank you.  I love you.  

 

 

 

October 27, 2014 - 9:07 am

Rene - Ah, Bo. What selfless love you have shown again with this post. Maybe inadvertently. To show your struggles to the world helps not only the ALS community, but the human community. Bo darlin, what a gift of love it is to all of us – to know we are not alone. To know that if one of our heroes in the faith (don’t cringe – hear me out) can weep and need rest and help like the rest of us mortals, and still love and serve both God and man… To tell us this, to put it out here for all to see and gain strength from, that is a gift of selfless love.
Thank you for this.
Prayers and love.

October 27, 2014 - 9:15 am

Rob Bagley - Love your heart, Bo. Thanks for being real.

Rob

October 27, 2014 - 9:16 am

Jalet - It is in the depth of our transparency we allow God to be the biggest, the Spirit to use us and others to find hope. Not only is your translucency an indication of your energy and abilities, it is the hidden treasure of both your strength, and His abiding love. I am proud of you Bo Stern. Not for doing for the ‘unbeautiful’ mess of ALS perfectly, but for finding perfect honesty in the shortcomings of the unexpected journey. I respect the honesty of body, mind and exhausted spirit in the trenches, more than I could ever find connection from a frail, false pedestal.
My prayers for grace in the battle and sleep in stolen moments continues for you.
I love you…and yours.
jalet

October 27, 2014 - 9:23 am

Sharon Molin - Dear Bo, you don’t know me, but I am a friend of your mom’s and I feel close to you because of her.

Thank you for being so honest about the trial you are going through. I pray no one… ever… criticizes you for your honesty. You are doing marvelously considering the hugeness of the trial you bear. The thought of watching a loved one die by inches is excruciating and no one has the right to say negative things (although I know they do). Lord, please protect Bo and her family from these harsh, unloving words.)

My grandson (32) and his fiance (33) are going through a terrible trial, too, at the moment. They have plans to be married in the spring and two weeks ago Victoria had a stroke and is not responding well to treatment. Joshua has MS and the stress is causing him to have flare ups with that. He has to work to pay the bills of two households plus all the medical bills hanging over their head… but he is so exhausted from the MS, the stress, etc. he can hardly function. So I am going to send this blog on to him just so he can see that he is not alone. No, it is not ALS, but it is a huge trial for them and it is so hard to be able to stand tall in the midst of all the stress and exhaustion.

This is just to say I pray for you and Steve and your whole family. I thank you for being so open and sharing your heart. It does help and it does ease the pain somewhat for those going through any kind of a trial. I pray blessings on you. I care what happens to all of you.

October 27, 2014 - 9:28 am

Amy - Dear Bo,
Thank you for sharing where you really are. I appreciate it because I believe I’m in that role of caregiver without being given that title by anyone. I’ve been married 21 years and have 4 kids, two of which have had some special needs of sorts. My husband joined the military late in life and was deployed to Iraq in 2009-2010 and came home with 3 “mild” injuries and PTSD. His Psych at the VA said, “just drive in Portland traffic as often as possible to desensitize yourself. You’ll be fine.” Worst advice ever. Since returning home, he doesn’t sleep well so I haven’t either in those 4 years. This year I have had a breakdown twice and teetered close to losing my mind so many times due to the stress of trying to manage our home on terrible sleep. Our oldest daughter is moved out to college now, so last week a friend came over and helped me move into my daughter’s empty room. My husband graciously agreed to try it, and after just a few good night’s sleep I am feeling better than in a long time. It is hard enough to ask for help, and worse when those closest to you think that because people look “fine” on the outside that you must be crazy or weak or just dramatic. It may seem like sleep isn’t that big a deal, but it most certainly is and I’m glad that you took some time for yourself. I will be praying that God will send the right answers for you and Steve to both rest well. Thank you for sharing!!

October 27, 2014 - 9:36 am

Holly - beautiful words!! I cared for my mother in law in our home until she died. And I had lots of help. It was a wonderful and difficult and rich experience BECAUSE I had lots of help. I would do it again with lots of help. Our generation will likely be caring for our aging and dying parents in our homes because the state of elder care in our country has not kept pace with the quality of life our parents are used to and deserve. We will need to become a people who can ask for help if we want to honor our families! Thank you for sharing your journey. It will be a cherished instruction manual for many who will walk your same path in one form or another someday.

October 27, 2014 - 9:42 am

John Laughery - I listened to this from Brennan Manning not too long ago when I was feeling weary and broken from some of life’s trials (trials I am continuing to walk through) and it was very encouraging. My wife and I will be praying for deep rest in Jesus, peace in the midst of your battle, and hope renewed each day!

October 27, 2014 - 9:45 am

Dee Zinn - Feeling blessed by the openness of your blog. So very proud of you for taking time to reflect and refule. Praying that you know and feel all the love from your supporters. I will continue to pray for you and your family.

October 27, 2014 - 9:50 am

Julie Creek - Been There Bo. Have lots of words, and thoughts. I will boil it down to this: Praying for God’s Grace for your family on every front.
Julie Creek

October 27, 2014 - 10:27 am

Becky Jo - Dear Bo, How bittersweet your circumstances are. Anyone (I think) can post and boast about their amazing resilience in caring for loved ones. That’s OK of course. It takes someone real to tell the truth of the heartbreaking struggle, grief, exhaustion, attempt to keep life as “normal” as possible for our loved one, children, family, friends, those we minister to, etc.

I was with a dear friend of mine a week ago Sunday when she said her “see ya later” to her mom who she had cared for on/off for 30 years. Her mom had MS and metastatic lung cancer. It was an incredibly difficult and beautiful time to share.The bond and spiritual connection they have did not come without much suffering. As you know, suffering to the core of your self is reserved for those Jesus can trust with it. It doesn’t make you immune to the pain and heartache or prevent you from needing others to help you get through it. It does bring you an amazing source of comfort, peace, and even beautiful memories of the privilege of caring so deeply, loving so purely and releasing so graciously.

If this sounds “preachy” at all, that is not my intention. I admire your courage to post this and to be working through the plethora of thoughts, feelings, decisions and sustaining as much normalcy as you can with your family. Continue to take good self care & process as you go. -Becky Jo
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For those who can, please reach out to this family. You may not know what to do, but just text or email Bo and let her know when you can be there. Don’t push too hard, but don’t accept her resistance at the first offer. Do laundry, mow the lawn, bring a meal, take her to brunch, grocery shop, bring her beautiful flowers, take her daughter to a movie or bowling, hang out with her and observe what it takes to keep up with the needs of Steve, learn the basics so you can care for him while she sleeps or runs errands or goes to the doctor/dentist, send her a snail mail card/letter, cry with her, laugh with her and let her know its OK to laugh (no guilt), look at photos of happier times, let her talk about her deepest longings and fears and the future, etc.

October 27, 2014 - 10:52 am

Terri Richmond - Bo, thank-you for being so gut honest! I am teary eyed as I just read your post. You are an amazing woman! Your posts touch my heart in the deepest place! Some day possibly you’ll write a book! You r an anointed writer and it is beautiful how you have allowed God to speak to you and teach you through the most difficult time in your life. Your doing a Great job Bo Stern!

October 27, 2014 - 11:16 am

Trudi Burner - Oh, sweet Bo! Been there done that. Cared for my mother for six months after she was diagnosed with ALS. I have two older siblings, but mama decided I was the chosen one for caring for her during this last stage of her life.

Feeling weak upon weak so many days….I understand the no sleep, no frills….Many nights when we would go to bed, mama begged me to stay up so I could keep her awake until it was a later hour to sleep…hoping and praying she would be able to sleep soundly through the night and not have me get up 458672093 times during the night.

But it was during the night, that God comforted, cheered and rested me through how many ever hours I got…whether two or three….and I was able to rise, at 4:30 a.m., shower and get ready for work and for the daily sitter to come and be with mama while I worked my job in the legal industry. He always woke me refreshed and ready to face the day, even though my old body was going “NO!!” in loud protest!

But getting up with mama each night was precious, special, full of laughter sometimes and always ended with a kiss on my “mamacita’s” little sweet head before laying back down until she needed to be “adjusted” again or helped up on the potty chair.

My prayer is that you find refreshment in the little things, strength for the hard things and rest during the quiet times and the loud times….He is there and the calm whisper of His name brings a calmness that only He can provide…..God Bless you as you care and love for your sweet Steve….

October 27, 2014 - 11:46 am

Terry - Bo- Thank you for your openness and honesty. I am so glad you have had a chance to recharge. I hope it’s not your last. My brother recently passed from ALS. I was so relieved for those times I could catch my breath. Sleep changes perspective :). I also found the ALSA support group to be a big benefit. We are all in this together. God Bless you guys.

October 27, 2014 - 12:11 pm

marsha Briggs - Bo Thanks to YOU for caring enough to always give… Your very best. Pour out His Love, till empty is the only gage exposed n then recieve from a a well that never runs dry, enough to share from this dry ground place, hope that endures.

October 27, 2014 - 12:26 pm

Teresa B. - Dear Bo, your friends will never EVER think that you don’t love caring for Steve because you take a break. I think to Tony’s Grandmother who needs LOTS of care in her nursing home. There is not one person to take care of her, not even two. But DOZENS who don’t work 7 days a week. You are only one person and can only do so much! I’m glad you took even a few hours for yourself to just be. And I’m sure your wonderful hubby was urging you to do the same. :) We love you.

Teresa Brown

October 27, 2014 - 1:18 pm

Pete Quortrup - Dear Bo, I love your blog. I have bought Beautiful Battlefields and Ruthless and have not yet read them beyond the first few pages of each because I too care for my spouse who has ALS. I haven’t read beyond the first few pages of ANY book for a while now. I just don’t have the time. I believe you that this was a difficult story for you to post but what makes it difficult for you to share is what moved me to reply. It is the hard truth. Caring for an ALS patient is hard and it WILL overwhelm you. Thank you for sharing it. I hope you can find more competent, caring hands to help you carry your burden. It helps. And I hope you can find regular time away from the house like you just did. It really helps, as I’m sure you know. Thank you – Pete Quortrup

October 27, 2014 - 1:43 pm

Jo - Bo, Giving thanks for you and your honesty! You, Steve and your family are always in my prayers. I recently discovered your blog. I have been on the front lines with ALS as well- my precious Daddy. Your posts are a blessing!

October 27, 2014 - 1:44 pm

Bob B - Bo,
So very few of us can even imagine what it is like for you, Steve and the rest of the family. I read your post and could, in detail, “see” you at the table writing this post.
I could “feel” the quiet desperation you must have felt as you wrestled with you own needs and those of Steve and your family.
I am confident that those that read the post could “hear” how you are feeling, how challenging things must be, and how much you love Steve and want to be strong for him, physically, emotionally and spiritually. In order to do so, you have to “sharpen your saw”, and I am glad you did.
When you need another break, please let me know and I will be happy to fly out and take care of Steve…for you, for him and for me.
I can’t think of a better way for me to “Thank You” and Steve for your friendship, the example you set everyday of what it is to be intimate partners in life together, and the anointed example GOD has made of you both. In the lives you lead together, as individuals-husband & wife-parents-grandparents, and as friends to the hundreds, perhaps thousands, you have touched with your lives.
Stay strong Mrs. Stern and give your husband a hug for me.
Love you guys,
Bob

October 27, 2014 - 2:28 pm

Kathryn V. - Jeepers Bo, all I can say is hugs and prayers and more of both coming your way. I am so sorry that you have to go through ANY of this, and heck yeah, breakdowns are NOT a sign of weakness. Please don’t beat up on yourself.

October 27, 2014 - 2:46 pm

Phil Camden - Thanks Bo. I needed to hear this because one day my wife will need help and a break. That won’t mean she doesn’t love me, as it doesn’t mean you don’t love Steve.

October 27, 2014 - 3:10 pm

Lisa Ham - Bo, thank you for an eloquent and honest post. I lived with my grandmother during the early stages of her dementia. Caregiving can be so overwhelming. I’m glad you were able to get some trustworthy help. I’m glad you had the insight to see that you needed to get away. Thank you for writing to encourage all the other caregivers out there. You are lovely! We’re praying for you and Steve.

October 27, 2014 - 3:11 pm

JoanHKnateder - Thank you so much for sharing those feelings of burnout with me.
My husband got his diagnosis in April of 2014. Things are moving
faster downhill than I would have believed. Our feelings run the whole range of human emotions. We are all only doing our best.
And yes, we need a break now and then for balance. And we definitely need sleep. We are not at the stage your husband is at yet. But, I can see it coming. My heart goes out to you. You must
take care of yourself so you can be there for yourself and your girls. God keep you in his love. Joni

October 27, 2014 - 3:53 pm

yvonne clanton - We have 3 special needs children, one who is VERY SN, trach and gtube. This past month my husband & I went off once for our 25th anniversary for the night and then for a conference for 3 days! It was the first time I’ve been away with kids for over 16 years. It was overwhelming wonderful. I really did not want to leave the conference (my husband’s conference- I was not involved) I totally understand!

BTW, could you get nursing? My daughter has 24/7 nursing and one of her nurses used to work for a man with ALS. He had a trach and yet could speak and taught college classes. She worked for him for 10 years and enjoyed it. Maybe if he had a nurse to take care of his daily needs, it would make him more independent of you? I could not function without a nurse. But even with them, i have two other SN children. Best of luck to you

October 27, 2014 - 5:15 pm

Rachael Juarez - Bo, I don’t know you, but the spirit within me sure loves you! My heart weeps with your circumstances, Steve’s and your children’s. I know Steve as my husband, Matt Juarez, worked with him at Navis. I am so glad Sherry Neimeyer shared your page on FB. You and your family will be in my prayers more often!

October 27, 2014 - 6:00 pm

bo - Rachael – Steve loves Matt Juarez – talked about him often! Thank you for your prayers…they are sustaining us.

October 27, 2014 - 6:58 pm

Janice Smith - Dear Bo,
So very well said and nakedly true. I have walked through that valley where I didn’t know where my next ounce of strength would come from. To this day I am still very grateful for the angels that came and spent night after night with our son, and the friend who would come and sit so we could go to church. I will never forget the kindness and how it strengthened us to continue in our battle. We are not expected to be super human and yet we try to portray that to everyone around us for fear of letting our loved one down and those watching our battle down as well. Thank you for releasing every person reading this blog to understand that together we can make it and standing alone will do no one any good in the end. I pray for God’s richest blessings to be over you and your precious family.

October 27, 2014 - 7:51 pm

Pamela - Thank you for your honesty. Even Jesus and His disciples needed time to rest by themselves and regroup.

Mark 6:30-31 “Then the apostles gathered to Jesus and told Him all things, both what they had done and what they had taught. And He said to them, ‘Come aside BY YOURSELVES to a deserted place AND REST a while.'”

May He bless your time BY YOURSELF and give you REST. <3

October 27, 2014 - 9:52 pm

jacquelyn strayer - Bo, I am on page 40 of your newest book… I don’t want to tell you that you are amazing and such a great gift to others…because that’s not what you need to know. In 40 pages I was in tears…deep cleansing tears of joy. I knew that my pain was important to God. I matter to Him. My pain matters.
“He is a man of sorrows and acquainted with grief”.
You know. I had forgotten though,and you reminded me.
I won’t tell you that you are a gift, because you will find it difficult to believe. I ache deeply for you, and for what you are living right now. I am so happy that you have a perceptive compassionate family, and that you were able to get away to take a breath. There is no need for apology or even admission of weakness. There is no one who would not be in need of rest after so many sleepless nights. I am glad to see that God made a way for you to sleep …and think…and regroup. Thank you for sharing. I am so thankful to have met both you and Steve and have been able to read your books while actually knowing you and seeing you on the butte…at Safeway…Trader Joe’s,… Macy’s. You are a human, who lives in my town. You write books and speak sermons of unmeasurable inspiration. I am humbled to be living in Bend along with you and your family and our church. Tonight, I read your blog, …and your book to page 40… and Praised God for you. I pray for strength for you and your entire family. God be with you Bo. I am a believer in your God.

October 28, 2014 - 5:10 am

Dawn Pieper - Beautiful! A heart full of truth. I will be keeping this very special blog for all the mommy’s and daddy’s that take care of children with disabilities. As a Pediatric Occupational Therapist, I watch helplessly as parents sometimes crumble under the weight of care-giving. Your raw and beautiful words will surely bring comfort and hope. Your words bring comfort and give them permission to take care of themselves.

Bo Stern, You are a gift! Thank you for taking time to renew. I praise God for you and remember you in my prayers.

October 28, 2014 - 7:00 am

Jeanne Esmann - Thank you Bo for being so real, and courageous for sharing your true, honest heart. I am so happy you found time to be by yourself. I know you love your husband, but reality is reality!

October 28, 2014 - 7:53 am

Janell - Hi Bo – I am not someone you know and I had no idea about you or your husband – I just happened upon your blog, saw the title and felt compelled to read it. You are brave in sharing your vulnerability and your journey. I lost an uncle and a cousin to ALS but only really knew a glimpse of the world you describe. My guess is your life is a mirror to my aunt’s and my cousin’s wife’s while they were caring for their spouses. I’m currently dealing with aging parents and a mom who has chronic “something” all the time. I do not live with them but I am the only daughter and often the caregiving role is mine. My role doesn’t come within a hundred miles of what you are going through, but I can see bits and pieces that I can relate to and I am grateful that you are willing to be so open and transparent. This age of social media and sharing provides such a wonderful resource for support – but, unfortunately, it also opens up the opportunity for judgment. I suppose this will happen whenever someone lays their heart and soul on the line but I think that you are certainly a light that needs to shine and those who try to douse it, will only serve themselves and their flames will quickly blow out. Carry on – the world needs you.

October 28, 2014 - 7:56 am

kathy Gilbert - Thank you…Bo! thank you for your honesty so rich to help us all. Thank you for saying what some of us can’t find the words for. You are good. I send you my love! <3

October 28, 2014 - 8:04 am

Valerie Carleton - Dear Bo,
I so appreciated your post. Many years ago my dad was struck with ALS, a fast version, and my mom was his care giver. I was in high school and was as much as possible a support to my mom.
Today I am my mom’s care giver, with some family and professional help. I am also in treatment for some effects of disease myself.
Your sweet transparency is a blessing and encouragement. You and your family are in my prayers for all of the Lords richest blessings in these days.
To everything there is a season and a purpose under heaven
Valerie

October 28, 2014 - 12:06 pm

John Gregoire - Another beautifully written piece as we close out Caregivers Month, Bo. I love how you are fearlessly “real” with your readers. I wrote this blog post earlier This month. I’ve been trying to get Linda to take an overnight for months but she won’t do it until someone stands up and says “Just go.”, as you experienced. Caregivers àre special people cast in unimanagably difficult roles. Thanks for writing this. No one knows until someone speaks up.

http://hope-JG.blogspot.com/2014/10/caregivers-month-affirmation-and-reality.html

October 28, 2014 - 8:13 pm

Meg - Thank you. I have been caregiver for my teen daughter who has Trigeminal Neuralgia, and this… Thank you.

October 30, 2014 - 7:22 am

Sarah - Bo, so many times your blog has taken me back to the days of my sister’s battle with ALS with the simple mention of something like cough assist, but this may be the easiest to relate to yet. I am so glad you allowed yourself to open up and admit these true struggles for the benefit of others. I hope you also allow others to continue to join forces with you. It is a rough road, as you know, and I am reminded of days sleeping by my sister’s side or watching her husband bear so much of the responsibilities. The burden is not the person but the disease. You are doing a great job remembering that. Will keep praying for your family.

Why We’re Desperate for Good Dads (and a Book on How to Be One)

 

I recently talked to a woman who has been estranged from her father for many years.  Her totally healthy father.   She wasn’t abused or yelled at. She just wasn’t much seen at all.  The story of her dad’s parenting could almost be told in one sentence, “He did nothing particularly bad and nothing significantly good.”  He tried to add a daughter into his life without stepping into hers.  He missed a chance to build and encourage her.  Actually, he missed a million chances.  Daily chances.  And he missed nearly every opportunity to protect her from boys who also wanted to make her an accessory to their lives, but not a prize.

 

Similar stories are everywhere.  I know that Dads are a popular scapegoat, and I’m not looking to castigate them here, but I will say:  I believe the dad/daughter relationship is one of the most important  and foundational elements to our well being as women.  Our dads have the ability to teach without words.  Regardless of their educational background, vocational success or communication techniques, they constantly teach us (maybe more than anyone) about our own worth as women. They teach us about beauty and how men view it.  They teach us about body image and sexuality and marriage and safety and commitment. It’s ironic that men – who I think feel WAY in over their heads communicating to women – are holding so many of the cards when it comes to their daughters.

 

Today, I’m grateful for two things.

 

 

 

 

 

I’m so thankful for this guy and the way he’s fathered his girls.

 

unnamed

 

 

The way he’s seen their unique beauty and helped them see it, too. The way he’s shown them Jesus and strong leadership and love.  The way he has taken care of their cars and killed the spiders and protected them from danger – sometimes the kind of danger that only a dad can see.

 

unnamed

And even though he can’t do all those things with them now, he’s still their dad.  His investment stands in their lives and their love for him is obvious and outrageous.  None of our three girls feels qualified or capable of being a caregiver (we’re all a little weak-stomached that way), but all of them have gladly stepped into that role with their dad.  They tackle the hard stuff without a single word of complaint.  He’s earned their trust, respect, love – and now he receives their compassion and care and it’s a beautiful, humbling thing to watch.

 

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So, that’s the first thing.  The second thing I’m thankful for today is my friend, Michelle Watson, and her new book:  Dad, Here’s What I Really Need From You.  Michelle is a therapist whose specialty is the dad/daughter relationship. She leads groups of men through field training in how to improve their connection with their daughters and establish beautiful relationships.  This book is written for men, in a way that men will enjoy.  Michelle does not take cheap shots or ridicule or condescend.  She respects men and the role they fill and her writing proves it.

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If you are a dad or know a dad struggling to connect with his daughter, grab this book.  You won’t be sorry.  Not ever.

 

With hope,

 

Bo

Dad Book

 

 

 

 

 

September 30, 2014 - 8:04 pm

Bill Horner - I never was much of a Dad, Military career, Viet Nam Three tours. Divorced from her mom, I have tried a couple of times to establish a relationship, but failed miserably. Now I just track her on Facebook, and pray for nher daily.

September 30, 2014 - 11:43 pm

Why We’re Desperate for Good Dads | Joni Frances - […] Bo Stern’s Blog features her blog post “Why We’re Desperate for Good Dads.” […]

October 6, 2014 - 10:16 pm

Don - This message today is so important. Bill – Continue to pray daily. Relationships can become very difficult. Remember that the Lord is in the business of relationships. What sometimes seems impossible, the Lord can help make possible. Never give up trying, remember that relationship is born out of blessing and not condition. When you became Dad it was forever. Your daughter will forever need Dad.

Life Defined: Why I Love Steve

 

unnamed-2Of all the things in the land of caregiving that make me feel uncomfortable and inadequate, showers are the worst.  I dread it every time. Steve is still much bigger than I am and he is mostly dead weight.  The floor is hard and slippery, falls are dangerous, he gets very cold and shaky very quickly so I have move fast.  All these things make it my least favorite, most worrisome job.

 

Yesterday, we stayed home from church and tackled the shower in the afternoon.  This time, it went like clockwork. I did my job fast, nothing crazy happened and when I got him safely deposited back in his wheelchair, dressed and warm, I felt this little adrenaline rush like I had just won an Olympic gold in showering or something.  As I was finishing up, he said something I didn’t understand. I asked him to repeat it, and he smiled at me, blue eyes twinkling, and said, “All dolled up and no place to go.”

 

And I don’t even know why, but it was the best thing in my day.  Maybe just because he is the best thing in my life and it’s easy to forget how much he’s enduring until I see a spark of how he used to be.  Because for all my talk about how hard it is for me to do showers, I simply cannot imagine how difficult it must be for him.  To live inside a body that’s betrayed you, to put all your faith in a little woman who doesn’t handle pressure very gracefully, to die to your dignity, to silence the part of your heart that’s wired up to care for your family and let them care for you instead – I can’t even guess what this one thing is costing him.  And it’s just one thing.

 

But through all these things, I get these little glimpses of the real Steve. The one who makes his temporary home inside that failing body. The one who focuses most of his energy on trying to get through each day right now, but is secretly filled with more wisdom, compassion, kindness and fun than anyone I know.  He’s the one who has the exact right answer to “Do I look fat in this?” (I won’t tell you the answer, but it’s awesome.) He’s the one who could teach just about anyone to shave ten strokes from their golf score in one lesson.  He’s the one who sat on the floor outside Whitney’s bedroom door for hours on the first night we took away her pacifier, knowing she’d need to cry it out for awhile, but not wanting her to cry alone. He’s the one who prays his family through the toughest seasons. He’s the one who meets with men who need help with things much more important than birdies and bogies. He’s the one who wasn’t able to venture out to a restaurant with us on Friday night, but sent along his credit card because he still wanted to buy his family dinner.

 

He is all these things  and I could list a hundred more.  There are things ALS can take away and things ALS can’t take away – but there are also these things that it can’t take but can hide.  I suspect that the most important job I have in this process is to keep reminding myself of who Steve really is. Not ALS Steve.  Just Steve.  Amazing, strong, wonderful Steve.  And to help the rest of the world remember too.  And, most of all, to help Steve remember that we remember.  Because a life well-lived cannot be defined by three dumb letters.  It cannot be reduced to a diagnosis or a condition or a failure or whatever else swoops in and wants to label a person Over and Done before they’re actually over and done.

 

All dolled up and no place to go.  Man, I love that guy.

 

 

With hope,

 

Bo

September 22, 2014 - 9:00 am

Sunny Hisel - Bo, my first memory of Steve is the first time he shared with the congregation at Westside Church. I saw a man larger than life so boldly and passionately sharing the word of God he almost blew up the microphone :) It drove the sound guys crazy! Sunny

September 22, 2014 - 9:35 am

Deb Teeken - Bo,

Your story this morning made me chuckle and brought a huge smile across my face! Why? Because it brought back a moment that I remembered from the ALS walk. Steve was listening intently to a story that friends were telling him, and in his quiet, sweet voice, he cracked a very funny, one-liner in response to their story. Witnessing the exchange and the twinkle in his eyes touched my soul, as it was like he gave us all….permission to lighten up!

September 22, 2014 - 10:18 am

Jane Lellman - The showers were such hard work, but I miss them. I really did love getting Jim clean and comfortable or all spruced up, as he would say. There certainly are things ALS can’t take, but they absolutely get hidden between and behind all the ALS related kerfuffle! Thanks for the reminder of the essential truth! He was not ALS Jim, he was Jim. Once after we finished a shower, which included him getting squeaky clean and me getting wet, he looked up with a smile at me dripping and typed “and a good time was had by all” which has been a life long catch phrase for him.

September 22, 2014 - 10:28 am

Cindi Dunn - Hi Bo & Steve…your blog today reminded me of something that happened last week that I had meant to write to you and then got distracted. I can’t remember exactly which early am it was, but somewhere between Tues (9/16 & 9/18) and Thursday, I was awake at about 3 am, and thought of you both as I often do, and your “night shift”…and was praying for you, when the LORD reminded me of the story of David, when he was thirsty & longed for a drink from the well in Bethlehem (had to look up the reference, 2 Samuel 23: 14-17) and his 3 mighty men go and attack the Philistine army and brought water out of that well, to David…anyway, David was so aware of the sacrifice that they had made for him, that instead of drinking the water, he poured it out, “to the LORD”…and somehow…don’t know if I can make this make sense to anyone but me or not, but what He told me in that moment, was that the water was Steve. Too precious…too valuable…that his life is being “lavishly wasted” and poured out for the LORD….I love you…hope this blesses your heart the way it did mine! It is an honor to know you and pray for you both! :-)

September 22, 2014 - 10:49 am

Susan David - When I was visiting last week I caught those glimpses of Steve all the time. The one that made us both laugh out loud was when I was just getting reading to pour his “lunch” into the feeding tube and he went “Boo”. I jumped and he laughed! I was so nervous about spilling his lunch on his lap that I was really consentrating and he saw an opportunity to catch me off guard!!! I still laugh about that. Steve never misses an opportunity to tease someone or bring a smile to their faces. Again, sure wish I lived closer!!! I pray for more strength for you and Steve daily!

September 22, 2014 - 11:29 am

William Hummer - 9/22/14
THANKS for sharing the most intimate details. It must be very difficult and yet the most rewarding LOVE relationship. I can’t understand it all but I do know that your love for each other is very real, genuine, and authentic. Please keep writing. The beautiful colors come through and I can hear the music and melody of true love.

Sincerely,
William Hummer
Danville, Illinois

September 22, 2014 - 2:59 pm

Tammy A - Who Steve is to me is the man who was speaking at Westside my very first visit. His words reached in side me to a place longing for a church home, and that was all she wrote. No matter how much his physical appearance may change, that commanding presence is firmly fixed in my memory and always comes shining through. I thank God for Steve, for being the one whose words showed me the way home. Adore you both.

September 22, 2014 - 3:51 pm

Diana Pike - My great uncle had ALS. He was an amazing, man of God. Although he’s been gone 17 years now, I will always remember his words. He could only move one finger but could type the things he wanted to say on his computer. He always said there was one thing his disease couldn’t take away. A Loving Saviour (ALS). Amen! Praying that thought gives you hope and perseverance today.

September 22, 2014 - 6:21 pm

Leah Phillips - Steve & Bo – I cannot find the words to express the value of your blogs. So many of us love you and pray for you and stand with you. And feel so helpless. And to know that you are willing to be transparent and honest in sharing your journey is such a blessing. You communicate to your minds but also to our hearts, which at the same time ache for you and cheer for you. Love and a huge hug from Colorado. Wish we could deliver in person!

September 22, 2014 - 7:35 pm

Elizabeth Stewart - Your post is a blessing. A true love story.

September 22, 2014 - 7:40 pm

Laurie - I feel like this is one of the most painfully beautiful things I’ve ever read. My husband and I have a relationship that I consider a pure gift – one I feel may be similar to yours and Steve’s. I am 51 and he is 57 and he was recently diagnosed with a rare heart condition. Though not even remotely as threatening or life altering as ALS, I feel this connection to you as you poetically pen your admiration for this amazing person in your life who, as you say, cannot begin to be defined by three letters. God be with you both as you journey this path and I thank you immensely for bearing your heart and soul to all of us on the outside looking in. Praying for you, Bo and Steve.

September 23, 2014 - 11:36 am

Christine Duncan - Bo, I’ve pinned this to my pinterest board of blogs that make a difference… your eloquence, your story, your husbands amazing living testimony… such an inspiration and encouragement! I’ll be lifting you and your family in prayer, moment to moment strength be supplied unto you through the One who is Hope incarnate. Thank you for your wonderful posts. Lord bless.

September 23, 2014 - 3:03 pm

Charles Breidenfield - Home News Latest The face of ALS: Hidden Valley Lake man’s family studied to understand devastating disease
The face of ALS: Hidden Valley Lake man’s family studied to understand devastating disease
SUNDAY, 14 SEPTEMBER 2014 00:25 JOHN LINDBLOM
Charlie and Donna Breidenfield of Hidden Valley Lake, Calif., with their poodle, Sophie. The Breidenfields have faced the devastation of amyotrophic lateral sclerosis – known more commonly as Lou Gehrig’s disease – for years, as it has stricken many members of his family. He’s now battling the disease. Photo by John Lindblom/Lake County News.
HIDDEN VALLEY LAKE, Calif. – It was 3 in the morning on a Pennsylvania highway when Charlie Breidenfield saw the flashing red light in his rear view mirror.
So he eased up on the accelerator and backed off the Ferrari’s speed by 40 miles per hour to 100 miles per hour.
Then he stopped and engaged the state police officer in a chat about the virtues of the car before receiving a ticket.
Breidenfield had lead-footed exotic European cars at such speeds before because (1) he wanted to test-drive them before he and his younger brother Bill, who were partners in a business, sold them and (2) he didn’t give a damn.
Why should he? Sometime in the future he knew that he would succumb to a condition in which he could not speak, swallow or even breathe.
“I had no fear. That’s why I drove like a lunatic,” Breidenfield said. “I’d do anything. I tried everything, just raised hell. I never worried about tomorrow because I figured sooner or later I’m going to get Lou Gehrig’s disease.”
This was a more-than-reasonable assumption for Breidenfield. As certain as sundown.
That is the cold reality for Lou Gehrig’s disease – amyotrophic lateral sclerosis, or ALS – which currently is the beneficiary of a fundraising program sweeping the nation that involves pouring a bucket of ice and water over someone’s head.
A study released earlier this year by the Centers for Disease Control and Prevention estimated that, while deadly, Lou Gehrig’s disease still remains rare in the general population. For the period from Oct. 19, 2010, to Dec. 31, 2011, there were approximately 12,187 people in the United States identified by the National ALS Registry as has having the disease.
However, for Breidenfield and his family, the disease has appeared with frightening frequency.
The reality for Breidenfield and his family is a chart created in 1993 to track its genealogy and deaths resulting from the ALS that Breidenfield and the rest of his family have come to know as “the family disease.” For a good and substantial reason.
“The people’s names in black are the ones in our family who died from it,” said Breidenfield as he unfolds his chart. “There are 111 that we know of.”
Or, about one out of every three names on the chart.
Generations on the chart, Breidenfield said, date back to the 1860s when his great-great-grandmother, Anna Herman, came to America from Berlin and married into a family named Reich.
It is believed that Anna Herman Reich introduced the condition – then known as Charcot’s disease– to the first American generation of Breidenfield’s ancestors.
“Doctors will say it’s 50-50 (fatal), but doctors are lousy on odds. The majority that I found – like in my father’s generation – died from it,” said Breidenfield. “During my grandfather’s generation there was only one who didn’t die from it.”
Devastating a family
For the past half-century ALS has been called “Lou Gehrig’s disease,” named for Babe Ruth’s iron-man teammate who was an ALS victim in 1941, two years after he played his final game for the New York Yankees.
In Europe ALS is still known as Charcot disease, named for the pioneering and preeminent 19th century French neurologist Jean-Martin Charcot.
By whatever name, it is caused by a dominant – and for the most part dooming – gene, a genetic time bomb that makes people prisoners in their own bodies and kills them in as little as two years.
“You only need one person with a gene mutation to spread it to the next generation,” said Breidenfield.
For that reason, he and Donna, his wife of 24 years, elected not to have children. The two have lived in California – most recently in Hidden Valley Lake – for the past 11 years after coming here from Michigan.
Within the past couple of years, Breidenfield learned of another branch of the family that he hadn’t realized existed when a cousin called him from Long Island.
She told Breidenfield she was in a wheelchair and a half-dozen members of her branch of the family, including her mother, died from Lou Gehrig’s disease.
Then another cousin – this one living just outside Philadelphia – contacted him to tell him about six of his relatives who were Lou Gehrig’s disease victims.
In his immediate family, Breidenfield lost older and younger brothers and his father to ALS. His grandfather died as a result of the disease at age 46, his father was 67 when he died.
Charlie Breidenfield’s older brother John would succumb to the disease at age 64. His younger brother Bill, an aspiring actor, was on a ventilator for 12 years before dying at age 42. Bill’s death and the death of their father, John, were separated only by a few weeks. Both died literally in Charlie Breidenfield’s arms.
Back up a few years to the top of the stairs in the Breidenfield family home in Michigan where Charlie Breidenfield, not 5 five years old, and his brother, John, older by two years, sat and for the first time learned about the debilitating neurological disorder that would take on such importance in their lives.
At the time, 1954, they were listening to their father in a long-distance, late-night phone call with one of their favorite aunts, talking about how another aunt, then suffering from Lou Gehrig’s disease, would not make it through the summer.
“I was devastated,” Breidenfield said.
Charlie Breidenfield of Hidden Valley Lake, Calif., displays a family chart that shows the more than 100 members of his family who have had amyotrophic lateral sclerosis, or Lou Gehrig’s disease. Photo by John Lindblom/Lake County News.
Groundbreaking research
The most incredible part of Breidenfield’s story is that medical researchers have traced the ALS gene mutation he carries – a marker on the Y chromosome – back through 93 generations. That’s 2,000 years on the Common Era calendar.
The worldwide study has established that Breidenfield is a member of the third largest family in which the ALS gene – known scientifically as G93A-SOD1 – has been a dominant factor.
It recently was estimated that the A4V mutation occurred 540 generations – or 12,000 years – ago. Researchers conclude that the mutation was carried by the Asian ancestors of American Indians who reached the Americas via the Bering Strait land bridge.
Even so, ALS is not primarily a familial disease. Researchers say 90 percent of the mortalities caused by the gene are sporadic.
Breidenfield has spent interminable hours and funds in his effort to combat and survive with ALS.
Twice a month he makes contact with neurologist Dr. Teepu Siddique of Northwestern University, who along with Dr. Robert Brown of Harvard discovered the first ALS mutant gene more than 20 years ago.
The major news media – including Tom Brokaw of NBC and CNN – heralded Siddique’s discovery, which Siddique said at the time “is the first time we’ve found a cause and identified what may lead to a to a treatment.”
With a treatment of choice still to be found, Breidenfield has adopted his own system of medication. Every hour on the hour he consumes a variation of compounds that presumably have warded off the disease.
“I’ve come a long distance from where I was,” he said. “Late in 2011 and early 2012 I was in a whole lot of pain. My brother John, who didn’t come back from it, was pretty sure that I was on the same road as he was.”
His brother John died at age 64. Charlie Breidenfield’s 65th birthday is in November.
“We got to the point where we were almost identical in what was happening to us,” Breidenfield said. “He had lost 18 pounds of muscle off his legs and was using a cane and I knew I was real close to needing a cane or not walking.”
Tragic as his brother’s death was, Breidenfield was motivated by it.
“It drove me like mad,” said Breidenfield. “After dinner I would sit down and stay on a computer until I blacked out. Now, I feel blessed that I can do as much as I can.”
In the time since his older brother’s death, Breidenfield has busied himself in an interminable search for medicines that can aid a Lou Gehrig’s victim. He also attempts to contact other victims.
He estimates he has tried or reviewed more than 100 compounds with mixed results. He has written to hundreds of other ALS victims including Hall of Fame and former Oakland A’s pitcher Jim (“Catfish”) Hunter who died, a victim of ALS, in 1999.
Most likely because Breidenfield is not a doctor, indeed not even a licensed practitioner, hardly anyone takes him serious in his effort to share information.
“Nobody responds,” he said sadly, “They’ll just say ‘who the hell’s Charlie Breidenfield?’ Until you see the clip from Tom Brokaw you‘d think I was just another bull—–er like you find on the next bar stool.”
He estimates he’s sent out hundreds of unanswered letters to ALS victims. Some of the victims, he believes, cling to the hope that, “If I change my name it will all go away.”
Universities and drug companies react in a entirely different way to Breidenfield’s calls.
“When I call them and identify myself they know right away they’re talking to someone who knows what’s going on,” he said.
Breidenfield, along with his sister Pam, has also spent countless hours tracing his ancestry.
“I don’t know how many times I’ve gone through the family graveyard in Philadelphia,” he said. “I also went to a 200-year-old funeral parlor to find some family members and I’ve spent a lot of time digging up dead bodies – not really digging them up, but finding paperwork regarding relatives who died from Lou Gehrig’s disease.”
Donna Breidenfield has had to watch her husband struggle with the effects of ALS and gamely wage his battle against it.
“He’ll have very good days and very bad days,” she said. “The trouble is when I see him having a bad day I feel I can‘t control anything. I’m just helpless at that point.
“It can be very stressful,” she continued. “Two years ago there was a point where he couldn’t get in or out of the car, he was dropping a lot of things, tripping over things, didn’t do much and had no energy.”
In terms of the battle to find a cure for Lou Gehrig’s disease, Charlie Breidenfield is indeed somebody.
“I asked Dr. Teepu a year ago how many (ALS-) involved family members talk to him like I do. Turns out I’m the only (ALS victim) who works with him and talks with him about what he’s found,” Breidenfield said.
A moment after Breidenfield said that the phone at his Hidden Valley Lake home rang. It was Siddique returning a call.
“How important was my family in finding the gene mutation?” Breidenfield asked him.
“It was very important,” Siddique replied.
Email John Lindblom at jlwordsmith@mchsi.com .
or Charlie Breidenfield at cd4harris@aol.com

September 24, 2014 - 12:03 am

Michelle Watson - Okay…I’m a few days late to this one but I LOVE hearing those eight words Steve spoke to you. They’re adorable and as you said, so dialed in to you. Thanks again Bo for letting us into the world that you and Steve share in this sacred season. Much love

September 25, 2014 - 3:04 pm

Harriet Hetzel - Bo- When I read your messages it seems as though we are experiencing the same journey– just on opposite sides of our country. My husband Doug and I are battling the 3 ugly letters, ALS as well. And when ‘we’ finish our shave, shower, groom, and dress, I feel like Doug has had the DELUXE WASH at the car wash and I am certain I have earned a medal. His smile melts my heart as tears stream down my face.

Doug is a daddy to three wonderful kids- and he was a pilot and also an avid golfer. He offers much love, wisdom and kindness to many of his military buddies and friends across the globe. I see in his eyes the love for our children and for me, and though his speech is hard to understand he never fails to tell me how much he appreciates all that is done for him. There is not doubt that he loves me. His greatest wish in life is to love and cherish his family. That one thing ALS can’t take away.

I’m touched by your words- please know I will pray for our Lord and Savior to have Mercy upon our men.

Harriet

September 29, 2014 - 12:01 pm

Bob Bolton - Steve and I became friends in elementary school, and enjoyed playing tennis and basketball together well into our college years. Then he went west, I stayed Midwest and our lives evolved.
Fortunately GOD had plans to make sure we circled back, and we did, playing golf when he would visit Florida for work. I remember our conversations before and after his diagnosis, and the profound calm he had about himself and his relationship with Bo, the kids and GOD.
I’ve been blessed to spend intimate, quality time with Steve and his family and can’t imagine an example of a more loving, compassionate relationship than what he has with Bo, his family and with GOD.
Bo’s illustration of what it is like to get Steve in and out of the shower is a perfect example of one of the questions I ask people who are considering getting married.
“Can you imagine you for him, or him for you – feeding, bathing, clothing the other?” I remind people that this “service” to one another may not come in the 70, 80+ years of our lives together…as exemplified by Bo & Steve….it can come when you least and most desperately don’t expect it.
I’m on the other side of the United States from my friend Steve and his family, but there isn’t a day that goes by that I don’t include them in my prayers and “Thank” GOD for them.
Love you Bro! Bob

September 30, 2014 - 8:05 pm

Melony Baker - Steve & Bo,

Your hearts for each other have always been an inspiration to us and many we know. Though we do not see all…. We do see the Love you both have for each other and the Love of God that shows through you. Yes, our life here is always to short, but the blessings we have shared with others, and the blessings from you that make others strong are a growth that we will only see when we meet our maker. Keep Strong in the journey, Hold on to small treasures you get each day, Cherish the wisdom that is sent to your heart, and know All Our Prayers Are with you, and We are Blessed for your hearts!!

We Love You

Melony & Dusty

October 14, 2014 - 1:40 pm

Lory - Wow…this post was like reading a day in my life. Like looking at a movie of my life. But looking at if from the outside reminded me of how I feel about my own husband and how all those positive thoughts and feelings are there but they get masked by the obligations and day in and day out work. Sometimes it’s just survival mode. Thank you for helping me today to lift up that mask and see what’s really important underneath it. My loving, amazing husband Fred.