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What An ALS Family REALLY Thinks About the Ice Bucket Challenge

 

 

Well, we are on week two of the very-viral very-everywhere ALS ice bucket challenge.  I know, I know, I can hear the groans…it started out cute and now it’s out-of-control.  Played.  Clogging up social media sites everywhere.

 

I even read this charming article in which the author called the challenge (that has raised an unprecedented amount of money for one of the most outrageously underfunded diseases) a waste of fresh water. Another headlined whined, Is the Ice Bucket Challenge Going to Cure ALS?”  Um, no (and – btw – that’s a stupid bar to set for any fundraiser.)  Critics complain that the challenge is really about feeding our American narcism and does nothing for ALS awareness or funding.  They assert that people should just quietly donate their money and move on with their lives.

 

I get that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease and then realize that it’s nearly invisible to the rest of the world.  As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil. I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?”  Right.  Why does she -a  doctor of medicine – still only know it by Lou Gehrigs Disease?  Because we humans need to associate things with people.  It’s easier that way.  That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money.  And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.  

 

Because here’s the deal: We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof!  Raise a ruckus!  Call all sorts of attention to yourself!  I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.

 

So, fear not, dear reader, this too shall pass and your Facebook newsfeed will go back to cat videos and kids singing Let It Go.  Until that happens, here’s a little reminder about what it’s like to live with ALS and why this level of awareness is like gold to families like mine.

 

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A Mile in ALS Shoes

People ask me often what it’s like to live with ALS. It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.

 

If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

 

    1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
    2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
    3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
    4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
    5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
    6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
    7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
    8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
    9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
    10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.

 

And to my friends living with ALS: please give us more ideas and help us move into your world for a bit. We want to help make your lives rich and full and I’m not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say: you are superheroes and we are in awe.

 

With unending hope for a million-mile cure,
Bo

P.S. If you want to literally walk a mile and help fund research for a cure, sign up to join Team Stern on September 6 for the Walk to Defeat ALS. Lots more on that to come!

August 15, 2014 - 11:16 am

Teresa B. - Cat videos and kids singing Let It Go. Add “political rants” to the mix and that is EXACTLY Facebook. My thought is….”WHO CARES?” Why do some care so much that people are dousing themselves with ice water and raising money for a good cause? I think it’s entertaining and besides, the amount of money that people have raised for ALS in the process is truly a blessing. Some people have nothing better to do than complain. Let them go back to their political rants. Me? I’m going to enjoy watching the ice bucket challenge and if I’m tagged, I’m going to go easy on myself and donate the money :)

August 15, 2014 - 11:18 am

Teresa - Thank you so much for writing this! You said what I couldn’t! I cried reading through those experiences you wrote about because my dad, sister and I went through each one with either my mom (1-17-99) or my brother (11-26-08). I will be sharing this on my FB!

I will be keeping you and your husband in my prayers!

August 15, 2014 - 12:17 pm

Jeannie - I have loved the Ice Bucket Challenges, for a few reasons:

1. It’s fun to watch people plunk a bucket of ice water over their heads.

2. It’s been fun to see people get so involved in something that they might have known nothing about before.

3. It’s awesome knowing behind those challenges flows money and donations.

4. It’s raising awareness for ALS. Unless you know someone personally touched by the disease, it doesn’t get a lot of attention.

5. It’s a unique idea, and, at this point, is only about ALS, not any other worthy cause. We have walkathons for everything; this is uniquely for ALS.

6. And #6 … It’s just entertainment for a good cause.

August 15, 2014 - 1:02 pm

Cindi - I love the ice bucket challenges because it brings focus to ALS. It has gone viral but for a very, very worthy cause. Much more entertaining the the kids singing and the cat videos, and it is raising money for ALS!

August 15, 2014 - 1:16 pm

michael felde - My family has lost 4 members since we carry ALS gene that is hereditary. I feel your pain. We can never feel the pain of those suffering. I have never shared this before now, but I envy them in their passing. They will never have to watch someone suffer and grieve the loss that ALS brings.

August 15, 2014 - 2:07 pm

Shawna - I LOVE the awareness and donations this is bringing to ALS. I do however believe if you are going to pour ice on your head because you care that much about the cause, open your wallet and donate either your time or money, even if it’s $1.00 or 1 hour. This reminds me of the “no makeup” challenge for cancer. People with cancer could care less about makeup. My friend, while battling 3 different types of cancer since the age of 19, wore makeup, but lost all of her hair. If you want to support those with cancer, shave your head and donate your time or money. My father passed on Christmas day 2013 and I helped my mother being the primary caregiver for his last 6 months. I did EVERYTHING for my father, including bathing him, powdering him, applying lotion, cleaning his ears, face, hair and clipping his nose hairs. I dressed him everyday and did his catheter care.I shaved him, toileted him and cleaned him up after his bowel movements. I experienced everything ALS has to offer and more. I watched my father take his last breath. Pouring a bucket of ice over his head would have hurt him, but donating time to him or money to the Disabled Veterans of America or the ALS Foundation would’ve put a smile on his face.I will be participating in the walk in my state in his memory and I will be donating my time and what little money I have because I know he will have a smile this will put a smile on his face in heaven. Watching me do something to fight for the people who have been inflicted with ALS is just as important to me as those people who are truly doing the ice bucket challenge AND donating to ALS.

August 15, 2014 - 2:57 pm

Alan Bredy - I just got tagged by a cousin on the other side of the country. Ha ha, I thought. Then I scrolled down the FB posts and a close friend – very selfless, very caring – shared your post. I read the teaser and thought “this may be my excuse not to do the challenge.” I’ve never known anyone with ALS so I never saw first-hand the misery that comes with it. Your description of your husband becoming entombed in his own body was heart-wrenching and I am so sorry that you all have to deal with the horrors that come with ALS. I will gladly take the “nooooo, not me” challenge and share your article at the same time. People need to know.

August 15, 2014 - 8:10 pm

Jane Lellman - The awareness is the best thing! And the donations are wonderful! But absolutely amazing is that for the first time since my husband’s death I feel hopeful! Hopeful that there will be a cure someday!

August 15, 2014 - 11:11 pm

laurie - Bo, thank you and thank you from Dottie. so we’ll said

August 16, 2014 - 2:11 pm

Cindy Swoope - WoW!!
What a great read! I never knew and am glad I’ve read this strong facted information!
It is heart renching to read how ALS “encombs” a person, your brother, a loved relative;… so deeply into so much pain & suffering.

That amount of pain and suffering certainly needs & deserves millions of more people and millions of more dollars, to bring about so so much more awareness and experiments & cures, and atleast things to help this desease to not be so DEVESTATING!!!

I’m moved & deeply touched from what i have read!

August 16, 2014 - 5:13 pm

Katie Renault - Bo,
Thank you for this short, sweet and to the point article. I have shared it quite a few times when the conversation leads the the Ice Bucket challenge.
After sharing it I feel no need to explain myself further.
Agreed, raise the roof!

August 16, 2014 - 9:05 pm

Whitney Parnell - To Alan Bredy – I’m Bo and Steve’s oldest daughter. Your comment above really touched me, and I want to thank you for your honesty, and your willingness to let your mind be changed. That takes large amounts of maturity and courage, and it’s obvious that you have both. And I know you might never check back and see this comment back to you, but THANK YOU anyway!

August 16, 2014 - 9:45 pm

Beth - Thank you for your blog. My husband suffered wife ALS for 17 years. I would love to hear that they have found a cure. It is a horrid disease to live with. I do have to say, that in our case, our Lord and Savior was amazing. We had friends and family that encouraged, prayed and physically carried us at times. I pray for your family, that God would surround you and bless you.
Beth Risley
Roseburg OR

August 17, 2014 - 2:29 am

Debbie Bell - Thank you Bo I work with PALS and CALS in New England and our foundation could not be more thrilled that ALS is finally being recognized. It’s about time and I’m lovin every challenge I see. Keep it going. Most of out foundation’s monies that come in go directly to patients and their families through our patient programs as this is probably one of the most, not only physically but financially debilitating diseases I know of, and seems to affect just the most wonderful people. Just not fair! Now if we can get the govt to reverse the Medicare law back regarding communication devices. You are an inspiration

August 17, 2014 - 6:35 am

papaya - That was an excellent post.

August 17, 2014 - 6:35 am

Donna Bean Kenyon - Thank you so much for putting into words my thoughts, exactly. I watch every single #icewaterbucketchallenge video that comes across my Facebook. All make me smile, some make me laugh ALL make me proud that so many are participating.
My husband was diagnosed in January 2012. He is the love of my life, my best friend, my hero. He owned his own construction company, was a very talented finish carpenter, played hockey three times a week and loves to fish. No one who doesn’t love an ALS warrior, will understand how heartbreaking it is to watch as one, by one all the things an ALS patient is and loves is ripped away.
So again, I say thank you for putting this out for others.

Bless you and your family,
Donna
Townsend, MA

August 17, 2014 - 7:15 am

Tracey - Thank you for this article. I have not known anyone in my circle or even friend of a friend who has fought this, and this truly brings the day to day challenges sharply into focus.

I love seeing the Ice Bucket Challenge videos, personally…they seem to get more inventive and creative all the time. I was talking with my husband about it this weekend, and I asked him, “Can you think of ANY OTHER FUNDRAISER where people can make fun of themselves, get their friends involved, and STILL raise millions for a very necessary cause?” He couldn’t.

Yes, RAISE THE ROOF!

August 17, 2014 - 7:31 am

Ellen - I am an RN and a few years ago I took care of a patient in the late stages of ALS. The first place it took hold was his lungs. Very devastating!! No one in my company understood it. I learned a lot about the disease. My son (15 years old) was just nominated for the challenge. He came home and was upset because he asked his friends what ALS was because he saw a bunch of kids doing this with no understanding of why they were doing it. None of them could tell him. So, he explained. Now all his friends have a new appreciation for why they just did the challenge. He did it and also donated. It is all about awareness. I feel for what you are going through and try to stay strong. I know it is hard. Love to you and your family.

August 17, 2014 - 7:38 am

Elisa - I was do hoping to read this article but I just wanted to mention it’s nearly impossible to see the light font and small print on mobile. I have perfect vision and I am a heavy iPhone user and I am happy to email myself the link and read it later at my desktop. I am mentioning it because I don’t want you to lose reads/views for that reason. Please consider making it more visible to make your cause more visible. :)

Elisa

August 17, 2014 - 7:59 am

Max P - Simply fantastic post. Your note of being outrageously underfunded is so on spot!! Thank you. And this challenge is simply incredible and no one will ever tell me different. It’s about time that ALS finally can get a sliver of the coverage and attention it deserves.

August 17, 2014 - 8:02 am

Jennifer Gaulin - What I find even more refreshing is that the younger generation are also actively involved in this increasingly popular challenge on social media. They are now being exposed to information about a silent disease . Raising money for an extremely underfunded worthy cause. Knowledge and awareness is power! Bottom line is donations are increasing ! Some people just feel the need to complain!!! It is for a good cause, get over yourself!

August 17, 2014 - 8:23 am

Mike Shannon - If you do that walk, make sure those dollars go directly towards treatment investigation to End ALS. Most walks just go to cover overhead at a local chapter. YOu can demand that your donations go directly to research, and to be earmarked for research. Also, request that the ALS Association begin to spend this windfall of the Ice Bucket Challenge on important drug development. This is a golden opportunity to make a big dent in funding for the right thing.

August 17, 2014 - 8:44 am

Joline Belanger - Thank you so much for the article!!! It really hit home for me. It will be three years tomorrow, August 18th when my mom passed away from ALS. My dad and I were here caregivers up until her last breath. I am glad they are doing this Ice Bucket Challenge. ALS NEEDs this kind of attention….finally! It took the doctors years to finally give my mother the correct diagnosis. My mom spent an entire month in the hospital, doctors not knowing what was wrong w/her. She lost all control in her legs, could not walk anymore. She was in excruciating pain. They practically physical therapied her to death. Kept telling her she had Neuropathy. She turned blue and couldn’t breath anymore. It was Mother’s Day weekend 2011 when she was sent by ambulance from Greenville, ME to Portland, ME for her to see the proper doctors and finally find out what was going on w/her. Took 10 hrs, 5 different doctors to tell her she had ALS. They gave her 1 to 1.5 years to live. My mom after her diagnosis live only 3 mths. I had so much to do in such a small amount of time. Completely uneducated in what ALS was. Had no idea what I was in for. She was completely bedridden within 2 weeks of her diagnosis. I can go on and on about all that my mom, dad and I went thru, but that would take hours. I lived 1 hr away from my parents. I traveled everyday to care for her and then my poor dad, the nights I couldn’t stay had to care for her all by himself. I finally moved my mother here to Jackman, ME ~ no hospice care. It was my mom’s choice not to go into a nursing home. I was given the biggest education of my life. I cared for her alone for 3 weeks straight, an hr sleep here and there because Dad was in the process of packing up and moving into an apartment close by us. This disease is one of the cruelest, unforgiving diseases any human being has to live thru. No one, and I mean no one should have to die this way! So, if people are going to get involved by dumping buckets of water over their heads, I thank them….and then I ask the ones I know who are doing the challenge to take a few minutes out of their time to research ALS on the computer, just so they know why they are doing this challenge. This challenge has brought in more $$$$ for ALS research than ever before. I am thankful and I know my mom would be as well!!! My heart goes out to you and your family. I am sending many prayers your way. Thank you again ~ Joline

August 17, 2014 - 9:09 am

Jill - Thank you for writing this articulate and inspiring post. I will share so people truly understand about the challenge of the “bucket” and the disease.

August 17, 2014 - 10:24 am

bo - Mike – I hear you with regard to funding research, but I’ll also say that my family IS some of that “overhead.” The ALS Association advocate who works in our area provides equipment loans (my husband uses a power wheelchair they provided that we never could have afforded on our own and our insurance has a $5,000 cap on durable medical equipment – which was quickly gobbled up with the three machines required to keep him breathing without choking at night), solutions to problems we have never faced, serves as a middleman between us and doctors, medical supply companies and helps us find our way through an endless tangle of insurance issues related to a disease that costs $250,000 to endure. They are available to us 24/7 and free of charge. There simply is NO other resource for ALS patients and many of them do not have families who can stand with them and speak for them when their voice is gone. Research is HUGE, yes, but patient care is essential as well and the ALS Association does both of those things really well.

August 17, 2014 - 11:30 am

Kim Hutchison - Thank you for this perspective…

@Michael Felde: I admire your courage for sharing and hope you find peace…

August 17, 2014 - 11:45 am

bo - Michael – wow. I cannot imagine how difficult this road has been for your family. It’s because of stories like yours that we need to be relentless until we find a cure. Bless you.

Two Sides of the Same Coin

 

This is Florence Marigold.

 

flo-at-2.jpg

 

She is two.  And darling.  And very sick.

 

 

 

This is Steve Stern.

 

photo-2

 

 

He is 52.  And wonderful.  And also very sick.

 

 

 

Steve has ALS and Flo has SMA, which is sometimes called “Baby ALS” – and if there was ever a term (and disease) that should not exist, it’s that one.

 

 

 

I met Flo through her mom, Michaela’s, blog.  Michaela and her husband are people of great faith, enduring an unimaginable storm.  Michaela writes like the wind – her words roll over and under and through with a graceful beauty that packs a gale-force punch.  I recently told Michaela that I wish Steve could meet Florence (he already loves her through her pictures and her mom’s words.)  He couldn’t hold her, but he would try to sing to her.  He would pray over her and tears would roll wild and he would believe for her.  They are sojourners, Steve and Flo, traveling together through the worst diagnosis and held together by the best God.  They each reflect Him in breathtaking ways.

 

 

I’m sharing this today for two reasons.  The first one is:  read Michaela’s blog.  It’s just beautiful.  The second one is: would you join Steve and I in praying for this family as they walk the soil of the Shadowlands and also welcome a new baby in just a few weeks?  If prayer makes a difference, and I’m certain it does (I’m proof that it does!), then this is worthy place to invest.

 

AlviarPhotography_M.Evanow_July2014-3.jpg

And finally, a letter to Florence from Team Stern>>

 

Dear, darling Flo, 

 

Do you know how beautiful you are?  Your life pulsates hope.  Our prayers for you are many and brazen. They are storm-the-gates, rescue-the-damsel sorts of prayers.  And they are also beauty-from-ashes and joy-from-sorrow prayers.   You are so little to take your place among the soldiers fighting a neuromuscular Goliath, but you are not overmatched. The God of David is the God of Flo.  

 

We pray for your heart and your hands and your hope.  We pray that you feel defended and loved every minute of your life.  We pray that Jesus Himself visits your dreams and gives you peace and rest and joy beyond reason.  

 

You are a miracle. Though we are far away, our feet share the same battlefield and we are joined at the heart.  

 

With all our love, 

 

Steve & Bo

 

 

P.S.  Can you just take a second and look at the pictures of Steve and Florence?  Those smiles just make me so happy and challenge me to smile, too.  That’s all.

 

 

August 5, 2014 - 8:37 am

Jane Lellman - Thank you for the introduction to the beautiful Florence!! I will pray fervently!!

August 5, 2014 - 12:38 pm

Michaela Evanow - I’m a speechless mess.
Bo and Steve…
Thank you, is all I can manage to scrape together right now.
xoxo

August 5, 2014 - 1:14 pm

wendy hodges - Only this God…only this God…beauty…for ashes..thanking God for these beautiful faces and hearts..for those who love them and for allowing us to love them too..Thank you Lord..for beauty indeed.

August 5, 2014 - 1:21 pm

Adriel Booker - This makes me so happy – that this introduction gelled and you can be such an encouragement and blessing for one another. <3

August 5, 2014 - 5:24 pm

Sarah Fairbrass - How beautiful to hear of two of God’s warriors finding each other and sharing such a bond. I’ve known Michaela for several years; she is one of my niece’s best friends; and have and continue to pray for sweet Flo and her beautiful family. Now adding another beautiful heart to my prayer list. Thank you for writing this and for being a grounding for Michaela.

August 5, 2014 - 7:41 pm

Teresa B - Prayers for sweet precious Flo. What a darling little one who has to be so brave. Gods blessings.

Three Hours of Darkness

 

Last week was rough and it culminated in one very difficult night as I was preparing to leave town for 24 hours and dealing with everything necessary to do that while also making sure Steve has round-the-clock care. I wrote this on Friday night and I’m only sharing it today because we are -thankfully – on the other side of it and feeling so much better and stronger now.  I think it’s important to tell the dark parts of the story, too.

 

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I’m sitting here in bed tonight, listening to Steve struggle for breath, and struggle harder still for hope and it is almost more than I can take. We have each felt beaten today. This morning I complained to him about how I need a break, a bit of time away, a good night’s sleep. I regretted my words almost immediately and then I went for a run and replayed them in my head for 3.74 miles.  Tonight I feel suffocated by my own inability to get this right. He feels suffocated by his own body and a sickness that is cruel beyond telling.  We are a sorry pair.

 

I’ve written a lot about ALS, pointing to the beauty buried in the soil of this battlefield, but tonight it’s hard to see it. It’s hard even to see my hand in front of my face – everything is inky black and there is no sign of sunrise. I keep thinking of the thief on the cross, suffering the cruelest death, discovering the promise of a home in paradise, and then hanging there in the dark for three hours. I can almost see him – suspended between the end and the beginning; fighting for every breath and wondering if the promise was true. Would this death end in life?  I feel like we’re living our three hours of darkness.  So the truth I cling to is this:  Even though the thief couldn’t see Him, Jesus was very near; just one cross away.  He is surely in our dark too.  He is intimately connected to our suffering and infinitely aware of all the ways we are gasping for hope and strength to keep fighting this battle.

 

On the beaten days, faith is all I’ve got. I’m not a single bit tempted to toss it out and go it alone. The amount of muscle and ingenuity I have to bring to this battle on my own is laughable.  He is my only hope.

 

Since I started writing this, the medicine I put through Steve’s tube an hour ago has begun to work and his breathing sounds better. He is drifting to sleep and I am praying for rest to sink deep into his bones and into his heart and into his hope. And I’m trusting the only One who can see in the dark.

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As I said, we are better now and we are thankful.  If you would like to shoot a prayer up for us, we are looking for some help with Steve’s care at night and it’s not an easy spot to fill. We’d love prayer for supernatural fitting together of the pieces we need to walk this road with grace and joy.

 

With hope,

 

Bo

 

August 4, 2014 - 9:18 am

Connie Reid - Prayers to Steve and you–I know they will be answered..and HELP is on the way!!!–Peace and comfort to both of you and your children.Connie

August 4, 2014 - 9:25 am

Vangi - My prayer went something like this for you and Steve:
(Burst into tears) Jesus….Jesus…Jesus…
(Burst into tears) Jesus…Jesus…(a few somewhat intelligent requests)…Jesus
(Burst into tears) Jesus…Jesus…Jesus

Not my most eloquent of prayers, but I know he weeps with you, and that’s a good enough example to follow.

Thankful for medicine. (hate this disease). Thankful for the “Someone” that is listening in the three hours of darkness, and is, truly, “a very present help in time of trouble.”

Love you, sister!

August 4, 2014 - 10:04 am

Angie - Praying for peace, strength, hope, and joy in the midst of your battle. Thank you, Thank you, Thank you, for your transparency.

August 4, 2014 - 10:42 am

Terry Scanlon - Dear Bo,
As I care for my brother who is in the late stages of ALS your words have brought me such strength and clarity of Faith. I pray for you and Steve and thank you for this post which reminds me I am not alone in those moments of human frailty when my anguished heart seems to be coming apart. Light does return and I know my redeemer has carried me through once again. Blessings

August 4, 2014 - 10:52 am

Jacqueline Rice - With tears rolling down my cheeks, the prayers are being sent up for strength and peace during this time. And a compassionate and competent person to care for Steve at night.

August 4, 2014 - 10:58 am

Beth - Jesus be their strength right now. Be their peace and rest. Clasp them tight to your bosom Jesus.

August 4, 2014 - 11:08 am

Sue - (I am Rob’s mom and Laurie’s
mother-in-law)

Late last week I was abruptly
awakened by not a thought or
picture reminding me to pray,
but two large printed words:
STEVE STERN.

Steve, Bo, your family and your
battlefield were/are completely
covered in prayer. Father, Son
and Holy Spirit are present,
holding you, comforting you,
giving you wisdom and being
glorified in your struggle.

Steve and Bo: you are an
inspration to our family.

August 4, 2014 - 11:16 am

Beth Yancey - Dear Bo,

I can’t thank you and Steve (and your kids)enough for fighting the good fight and sharing about it so openly. What a good metaphor to use the theif on the cross. Since you share, other precious ones will have courage to face their hours of darkness. Praying for the Light of the World to shine on you and for you to reap a thousand fold for all the good seeds you sow. Also joining you in prayer for the perfect help to fit right into your family and bless you all with tender, skilled, and compassionate care.

August 4, 2014 - 1:18 pm

Jane Lellman - Although I am sharply knowing some of what you are going through, I feel helpless. But I am also absolutely convinced he is there with us in the dark. I am praying his light continues to reach you where you are. Please know my heart is hurting for you.

August 4, 2014 - 1:18 pm

Kathryn V. - Hugs and more hugs and steady prayers.

August 4, 2014 - 4:27 pm
August 4, 2014 - 4:29 pm

Cindi Dunn - Bo…I have known you have been struggling, I guess I should say I knew Steve and you both were struggling, as I have been awakened both Sat night, (early Sun morning actually…2-4:30am, and last night, from about 1am until 3:50am or so…both times you and Steve, were on my heart & in my prayers, and I felt like I was told to breathe for Steve early this morning…so I did…so glad things are better (some) today. I love you both so much! Only eternity will reveal all that our wonderful Father is accomplishing in these 3 darkest of hours! Love you so! cindi

August 4, 2014 - 9:23 pm

Denise Miller - Dear Lord, Though Bo and her family feel a weakness at times in the hours of darkness may she rest assured in the strength that you have for her in each new day and the strength that she gives to others who share in this battle. Please provide the perfect in home health person to share with the nightly care for Steve.

August 4, 2014 - 11:05 pm

Phil Camden - Hi Bo and Steve.

With tears, love, prayers and much love from Australia.

August 5, 2014 - 10:21 am

Laura R - My heart is so full, all the pain people I care so deeply for are going through. I have found myself on my knees, pleading with Jesus for some understanding as to why there is so much suffering. I have felt so powerless….I can’t help…..the Lord showed me this morning that I can through prayer! So know that you are in my heart, thoughts and abundant prayers..love and hugs Laura R.

August 5, 2014 - 12:35 pm

Helen Campbell - I don’t even attempt to understand your trial, but I know our God is great. I know that He will never leave you. I know that He is LOVE. May you have unbelievable strength and power. May you digest His sweetness and rest in His goodness. May God grant you the desires of your heart. May Steve be mightily healed in the name of Jesus.

Sincerely in Him,

Helen Campbell

Collisions

 

Yesterday, I filmed some devotions to go with my new book. It was a pretty involved process since we needed lots of them and each one requires several takes.  By the time I fell into bed last night, the whole experience was still buzzing around my brain to the degree that I dreamt about it. And in my dream, as soon as I was done filming a video, the tech crew would remove it from the camera and pour it into a feeding tube.

 

Now, I’m no dream analyst, but it would seem my work-life and my home-life are colliding.

 

This dueling focus between my investment in the career that I love and the man & family I adore is a battlefield for me.  I have chosen to stay committed to work and writing during Steve’s illness for a variety of reasons, but the main one is: I feel certain this is the will of God for my life.   I know many spouses who quit their jobs and devote themselves entirely to the care of their beloved.  Others walk away from the marriage entirely (and I have to assume that’s a result of preexisting issues in the relationship and not just because of the diagnosis.)  This decision to embrace both caregiving and career is the most difficult thing I’ve ever done and some days I feel my toes dangling over the edge of that great and terrible cliff called burnout.  Some days I feel certain God has overestimated me.  So when I want to call in sick to my life, I have to keep reminding myself of a few primary truths and they are thus:

 

  1. The call of God comes bundled up with the resources we need to accomplish that call.  He equips us in the same way we equip our kids with the right backpack on the first day of school.
  2. I don’t have to do this perfectly to do it well.  Screw ups are part of the landscape and that’s okay. In a season of life when the watching world is being so generous with their approval (i.e. we hear a lot about how inspiring we are), I am living in undeniable proximity to my own inadequacies.  My dumb mistakes and obnoxious self-centeredness smack me in the face on a daily, sometimes hourly, basis.  It is built-in humility.  And I’m grateful because I am old enough to have seen the profound impact humility makes on those who hope to change the world.
  3. He will not be in debt to me.  I can easily play the martyr (“I just give and give and give….”) but sometimes when it’s quiet and I’m surveying the blessings our great Creator has piled on my life, all I can do is whisper, “You’re outrageous.”  His love has been lavished over me in handfuls and heaps and I will never be able to pay Him back.  He will not be in debt me.  Not ever.

 

 

So, I’m thankful today to serve the One who came to bring  ever-increasing levels of peace into our collision-course existence.  He is God at the intersection of too much and not enough, of sorrow and celebration, of beauty and ashes.  He is God at the corner of Saturday work and Sabbath rest.  He is.  And we are His.

 

 

With hope,

 

Bo

 

 

 

 

July 29, 2014 - 1:12 pm

Sherri - Amen.

July 30, 2014 - 1:04 pm

Teresa B. - Call in sick to my life…..wow, that hits home for me today!!

Thank you for sharing the truths. I have truths as well and sometimes it’s hard to remind myself of them. But for my sanity and to keep me in check with our Awesome God, I have to!

I know you were called to write. Your books are amazing and have helped so many…including me!

Blessings to you and yours!

August 4, 2014 - 4:55 pm

Liz Lutz - I go to Horizon Community Church and heard both of your sermons this summer. We bought your 2 books and we will pray for you and your family. Thank you for your transparency and your open heart. God bless.

Two Roads Diverged

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Back when Steve and I were both healthy, I occasionally thought about what it might be like if one of us got sick (**see footnote below). I imagined many of the challenges that might go along with a terminal diagnosis and I was right about some of it  – but I missed a big one completely.

 

One of the most difficult things about navigating a marriage around ALS (for me, at least – I certainly don’t speak for everyone) is that for the first time ever in our relationship, we are heading different places.

 

Our 29 years together have been filled with up’s, down’s and a whole lot of middle’s.  We have not done marriage perfectly by a long shot, but the one thing we’ve always contended for in our relationship is unity of purpose.  We have really tried to have the same goals in mind:  raise happy, healthy kids, upgrade the car, improve our education, serve with excellence, etc.  We are a good team because, while we disagree on plenty of shallow things (he likes oysters.  Ew. How can I agree with that?), we always agree on the big things and we help each other believe that we can get where we’re going.  We’ve had to adjust our course through the years, but we’ve always adjusted together.

 

But when Steve was given a 2-5 year prognosis, it was like we both heard the word “recalculating” spoken independently to each one of us. From my vantage point, Steve’s journey is far more difficult than mine, but his destination is much more beautiful. He’s moving toward resolution.  Toward the ultimate cure. Toward a life that is unknown and yet not – we know it will be beyond all dreams or imaginations.  He has no decisions to make about his future life which I know is both unsettling and comforting.  My destination is also a mystery, but I feel so responsible for it and for the children who trust me to lead them.  I feel like I’m entering a world with no map and without my trusty sidekick who’s helped me with directions for 30 years. He’s also made the journey really fun. So I can’t say that where I’m headed looks in any way dreamy.

 

And yet, I have this assurance that circles through my brain when I start to feel suffocated by thoughts of an unknown reality and you already know what it is because I say it here all the time.  The God I’ve chosen to follow has already been to every minute of my life.  He knows where our respective roads are going and I do believe He calls them both, “good”.  He has good plans for me and beautiful plans for Steve. He’s always known where the road will take us, and He’s not wringing His hands in heaven over the fact that the details look murky to me.

 

So, we walk, Steve and I.  We walk together.  I help him get where he’s going and he helps me.  He talks with me about what to do with the house and the kids.  He has father-son talks with Corey about how to help me navigate the road ahead. He generously sows into a future he may only see from the balconies of heaven.  And these conversations?  They are painful. Yipes, they are painful.  They are filled with rolling tears and gaspy sobs (me – all me, Steve doesn’t cry about this stuff).  They are filled with brutal, raw-edged beauty that I will remember always as the most intimate moments I have ever shared with the love of my life.

 

I don’t have a clever application point to end this with.  I can’t tie it all together for people who are not steering their way through the Shadowy Valley.  I only share it to point to the goodness of God in a world of uncertainty.  Also, as a marker I can return to when I wonder where the heck I’m going and where is that map and how do I read this compass anyway?  I hope it gives you hope that you can find your way as well.  A verse to end with seems like a good idea:

 

That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day. 2 Timothy 1:12

 

 

With hope,

 

Bo

 

 

 

 

**Note to healthy people:  try not to do that.  Just enjoy being healthy.  And if you DO imagine tragedy, just remember: you can imagine the pain, but you can’t imagine the grace that comes with it.  That’s all.

 

 

July 25, 2014 - 9:11 am

Patti Bryant - Bo, you always manage to bring a smile to my face, put a tear in my eye, affirm the hope in my heart and re-focus my eyes on Jesus. You are the real deal girl! Sending you a hug and always praying.

July 25, 2014 - 9:13 am

Jami Steeley - Beautifully written Bo. As a woman who is struggling with her own painful road, I’ve been reminded of the hope in my future because of my God whom I love and follow. So thank you. You and Steve are always in my prayers.

July 25, 2014 - 9:44 am

Jennifer - Love your sweet, humble words of truth. God is so good.

July 25, 2014 - 9:52 am

Sherri - With tears of joy and hope…Thank you, Bo.

July 25, 2014 - 9:58 am

Helen Washington - God knows our roads and ours have been different.
But II Timothy 1:12 has been a security blanket, a life raft
and ever present comfort and reality during a hard season.

I am so blessed to know and love God and to know that there is no bottom to Him and that His resources continue to supply you all moment by moments no matter what is contained in that moment.
Thank you for being so generous to liberally share the evidence His grace and provision in your lives.

I also glad it is not redundant to say that we continue to pray for God to do His work as only He can.
xoxo

July 25, 2014 - 10:08 am

Gretchen - Beautiful.

July 25, 2014 - 10:14 am

bo - Helen – “there is no bottom to Him”. Yes. I’m going to put that line in my pocket today.

July 25, 2014 - 10:20 am

Uncle Robert - Thanks so much for this post Bo. you are truly a warrior. As I read it this morning,, I noticed that many of the things you said applied to me. At 82 years old, I find my self thinking the same things. So you have been a real faith builder for me. I know it’s not the same, but I want you to know that you have been a real blessing to me through out your difficult journey. And I am so proud to be your Uncle. We are praying for you.

Uncle Robert.

July 25, 2014 - 10:45 am

Dora - Bo, I hear your heart because mine is right there too. Richard and I have hard discussions about the future when I must travel on alone (if this is God’s plan). He says the hardest thing for him about ALS is having to leave me. I know we need to have the discussions because he wants to prepare me and there’s so much I don’t know, but I can hardly breathe for the tears and the pain. Sending you a hug today. Thanks for putting into words what I’m feeling.

July 25, 2014 - 11:59 am

Becky Aylor - XOXO- B

July 25, 2014 - 12:47 pm

mike smith - Bo thank-you it is a blessing even knowing you people GOD LOVES US SO MUCH MIKE

July 25, 2014 - 1:09 pm

Kathryn Vai - Hugs. Hugs. Hugs.

July 25, 2014 - 1:47 pm

Alia Joy - My father passed away 3 years ago after quite a few more of being progressively sicker. To watch my mother soldier on after 37 years of marriage with a relatively long life ahead of her, navigating it alone now, but also never alone, is sheer grace. I’d say she knows a thing or two about God’s mercy and also joy but she’s known suffering and I know it sounds trite to say she’s better for it, but I’ve never seen anything so beautiful as her walk leaning hard into God these past few years. It’s all of that wrapped up and walked through. Thank you for sharing your story.

July 25, 2014 - 1:48 pm

Debbie Nugara - Hi Bo, I’m pretty sure you don’t remember me… I was sent your web page somehow a few months ago. I have been so encouraged as I read your posts. I met you 21 years ago in Lincoln Nebraska. I remember being in church and hearing you and your daughter sing while playing “This Warrior is a Child”. To this day when life seems difficult and the valley seems deep… I remember that song and what a comfort it is… you truly are a warrior. Debbie

July 25, 2014 - 2:16 pm

Vangi - Oh, Bo. How I love you…and the beautiful, gripping truth that you wrap up in such beautiful words and phrases. Astounded and blessed by both. I weep as I read this for your family…but not without hope or life or an acknowledgement once again of the goodness of God.

July 25, 2014 - 4:50 pm

Shell - Bo- Thank you for always sharing your truth, faith, raw honesty. As I am going through my own very dark time. I thank you for allowing God to shine through you. Bless you both.

July 25, 2014 - 5:36 pm

Ryan Rhoden - We are praying for you Sterns. Bo, you blow me away. So wrecked just reading this. God is real, this is real, this is happening and He’s right in the midst of all of it. His presence is dripping off your life and your words. You carry a heavy, but powerful mantle, but you do not carry it alone. I see God draping it over your shoulders, like a heavy blanket, but it’s huge. It is more than you could ever lift or stand under, and you look up at him and say “I can’t”. I see compassion in His eyes, and He looks around your life and nods and those who are standing nearby. One by one, they understand, and come and slide under it with you, allowing the weight of it to rest on their shoulders as well. More and more silently come, no words needed, and before long what was heavy is light, what was a burden is a covering, and what was impossible is possible. (Gal. 6:2, Matthew 11:30). Thank you for taking the time and energy to let us into this walk with you. You have allowed God to change lives through you.

July 25, 2014 - 6:14 pm

Roger Levasa - THANKYOU!

July 25, 2014 - 6:54 pm

bo - Ryan Rhoden – Wow. Thank you so much. The word you’ve shared could not be more meaningful or powerful in my life today. I’m going to hold onto it with both hands.

July 25, 2014 - 8:12 pm

Deb Adams - What a beautiful verse. And I know that God is in this and He is GOOD!

July 26, 2014 - 7:20 am

Genia Melton - Hi Bo, thank you for sharing your heart. I’m praying for you.

July 26, 2014 - 9:56 am

Angie - Amazing and beautiful. My prayers are with your family.

July 28, 2014 - 4:29 pm

Nancy Gayman Shaw - Wow! So true. When someone asks me how my day is going I say, “It’s always a good day when I can get out of bed.” Today I got out of bed, only to be confronted by spiritual warfare concerning my wayward granddaughter, Anika. My heart is breaking to see what she is choosing to do with her life when I have friends in Christ who are walking thru the valley. At 17 she feels immortal and that life is meant to do what ever she chooses and party, party and getting into trouble is no big deal. Her password on her IPod is 666, which we have asked to be removed and she thinks it’s a big joke to mimic satanic gestures when she post photos of herself on instragram and facebook. She knows Jesus is the way the truth and the life but tells us she is not ready to make that a commitment and of course, her actions show it. I grieve for her soul and life as only God knows how much time she has to live for Him. I refuse to listen to her lies because I know where they come from. It’s almost like watching a disease steal a person’s dignity if they let it. My only hope and nothing less is Jesus Christ and His righteousness. I would like to go to bed and pull the covers ovwer my head and when I wake up have everything normal, whatever that is. Know God doesn’t promise us normal, whatever that is. Everyday is a new day, a new walk, new experience with Him. Some days are diamonds and some days are stone, some days the cold wind won’t leave us alone, as John Denver sand once upon a time. But God is still there no matter what kind of a day it is. This too shall pass. Thank you Jesus for Steve and Bo and all the words of encouragement because if they can rise above what has come upon them then we all can too. LOL

August 8, 2014 - 8:20 pm

Laura - Thankyou Bo, just simply Thankyou. God Bless you and your family deeply! Love you with all of my heart, because that is the gift you share every time you write. Thankyou!

August 9, 2014 - 6:01 am

Verna Talbott - Thank you.

August 9, 2014 - 9:07 am

Karen Hermann - Bo I don’t have adequate words to express the impact of your words. The responses of so many people clearly show that god has gifted you with a unique ability to share at a raw vulnerable amazeingly honest place. My heart breaks for you Steve and your family. I too am blown away with the power of your faith and the integrity with which you all are living out as you are in this particular time and place. I was in your first beautiful battlefields bible study. I still talk about its impact. I bought many of the materials and have given them to people who needed it. You have challenge me to examine my life on many levels and I thank you for this. I truely hope that as one of your blog writers wrote that you feel supported by those who come under your blanket of burden with the attempt of makeing it a bit easier to bear. You and Steve are truly special and powerfully being used by god!

August 10, 2014 - 12:27 pm

Laura - Oh Bo,
Thankyou so much for last night and your amazing words, you are so truly anointed by God, and do such an awesome job speaking His Truth!! I was so excited when I saw we’re going to be our speaker and teacherlast night..we haven’t made it much this summer 2 our regular Saturday night services but..last night was very special because it was with my son who is going into highschool and my nephew who is here from out of town and is going to be a sophomore this year and since I didn’t realize there were no high school programs on Saturday night they sat with me…..which quite honestly blessed my socks off…. your message hit home with all three of us but to see the two young men that they are becoming and to truly hear you was a miracle and to hear what you were saying and “get it”. God is so faithful and so good!!! Thankyou……there’s so much more to say but I just more than anything wanted to thank you for sharing for sharing your heart break your heart
aches, suffering ,the struggles and the good stuff I know you don’t know me but I love you dearly and your family and pray for you everyday, thank you!