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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Of 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.