I’m here again tonight where I often find myself: sitting in the dark beside Steve’s bed, not ready to sleep but not willing to leave him. Nights are both hard and good. They’re hard and then they’re good.
Around 10:30 every night, I give Steve his night meds – a pretty potent combination designed by hospice to help him sleep, keep him from choking and help with the pain he’s been experiencing in his shoulders. While they sink into his system, I refill the humidifier in his breathing machine, put his bed down, change the linens on his pillow and push the bed as far to the middle of the room as it will go. He rolls in thirty minutes later like clockwork and by this time, he can hardly keep his eyes from closing. I’m grateful for the meds that help him sleep more comfortably because sleep is his only escape.
I remove the neato cup holders from his wheelchair. His caregiver, Crystal, devised this ingenious system for him to keep a spitting-cup always within reach. He liked that so much that she added another one for the remote control. What man in this world wouldn’t want a carry-along caddy for his remote control? Crystal and Steve are partners-in-crime, for sure. At night, I take the cup holders off so he can move his footrest in which makes for a much safer transfer from chair to bed. How we discovered we needed a safer transfer system is a long, scary story that I’m not ready to retell just yet. (If you’ve never worked with someone with ALS, the best way I can describe it is to say it’s like moving someone whose limbs are made of heavy jello. It’s very awkward and I’ve yet to find a system that feels foolproof.)
With the footrest moved in, I take off Steve’s neck brace and shirt and then we count down to three and I lift him out of the wheelchair, balancing him on shaking legs. He can stand long enough to let me pivot him onto the bed. I breathe a silent sigh of relief every time he is safely on the bed. He uses the suction machine and then I lift his head up from where it’s fallen against his chest and put the breathing mask over his face. Nearly every time I do it, I wonder how many times I’ve done it in the past few years. I wonder how many times he has dreaded another night with the mask and how much he longs for the days when he could sleep without so many constraints.
I turn on the breathing machine and it makes a soft, whirring noise that has become a comfort to me. Steve lays down hard on the pillow – he has very little core control, so it’s always a pretty ugly drop from sitting to laying on his side, legs dangling lifeless over the side of the bed. I lift his legs up and move his arms to an angle that is useful for him to gain some leverage. I place a hand warmer in his palm, put his hands together and then wrap them in a towel. I cover him with several blankets and have learned to tuck them in well or he will wake me up soon, telling me he’s cold. Nights are cold without muscles. When he’s finally lying there, tucked in and masked-up, we wait. I stand beside him while he decides what needs to happen with his head in order to be comfortable. He thinks about it for a bit (sometimes a pretty long bit, which is kind of annoying) and then tells me what to do. “Lift my head up and pull the pillow toward you.” Things like that. He’s unable to shift his own head in any way, so he relies on others to do the adjusting for him. Sometimes I get it right pretty quickly, sometimes we’ll go through seven or eight different positions before he feels ready to sleep. Not gonna lie, this is one of my more frustrating responsibilities. When his head feels just right, he whispers, “Okay. I love you.” Every night, that’s how it goes. And the process used to be repeated several times a night, but now it only happens once or twice and, this week there were two nights when it didn’t happen at all. He slept straight through from 11 to 9:00. That hasn’t happened since…I can’t even remember when. On the one hand, I’m glad he’s able to sleep. On the other, I think it’s indicative of the progression of this disease and how exhausted he always is.
Once we’re in for the night, I pull the covers up over myself and my first thought is always, “We made it.” We made it through another day. We earned a night of sleep. And we tried with all that remains to glorify God and to make His name famous. And maybe we failed a lot, but we tried.
Sometimes I fall asleep before any other thoughts, and sometimes I lay awake for long hours, thinking of how life is now and how it will be. I wonder how much longer our nights will be like this. If I’m honest, there’s not a single night when I don’t wonder if Steve will wake up in the morning. The longer we go, the more I’m able to shelve the stuff I can’t solve, but sometimes it does race in all bossy-like, trying to steal my peace.
And nights like tonight, I write. I mostly write so that I’ll remember it down the road. I write to remember these dark, intimate moments when marriage looked so different than I ever dreamed. I write for a day when I’ll need to remember that I’m stronger than I think. And I write so the rest of the world can understand the brutal realities of life with ALS.
That’s why I’m pushing publish on this post. Not so people will feel sorry for us, but so they will know the nature of the fight so many face, and that many of them face it alone or without the benefit of a caregiver who shows up in the morning. I believe that every person with working arms and legs has something they could give to a person who has none. Every person could volunteer time to give a caregiver a break or give some money to help find a cure. Maybe if enough of us tell our stories then we, the citizens of humanity, will be compelled to fight for change.
The first forty-five years of my life were marked by the discovery of hidden strength and abilities. I learned bravery as I attempted a lot of new things, knowing I could always rebound and rebuild.
The past four years of my life have been marked by the discovery of the depths of my weakness and inabilities. My journal tells the story, with notes scrawled out like graffiti on the walls of a prison cell: I can’t do this. It’s over my head. I’m not made like this. I don’t know what I’m doing. I’m not enough. I’m not enough. I’m not enough (and seventeen variations on this thought.)
I have wondered out loud why God would trust a man with no muscles to a girl who is can’t even conquer the laundry.
I promise you this is not false humility or a thinly-veiled plea for you to tell me I’m awesome. This is reality. After 45 years of up-and-to-the-right, ALS brought me face-to-face with the endless array of things I cannot do and the many reasons Steve would have been better off marrying…anyone else.
I could fight these feelings with my resume or my good intentions or with the argument that many people aren’t good at this stuff and aren’t forced to find out. I probably have fought with all those things, and would continue to do so except they don’t work. What has worked is this verse on repeat in my brain and on my tongue. This simple verse, quoted over and over, so my ears can hear it and my heart can take refuge in it.
He is before all things and all things are held together in Him. Colossians 1:17
He holds all things together. He holds Steve together. He holds my children together. He holds my heart together when I think it’s splintering into sawdust. He is the first and last word and even when the storm spins outside my door, His love holds me together. Always and in all ways.
I hope you feel Him holding you today.
I have done grownup things this week. Difficult, emotional, grownup things. I have been putting them off for a long time, so they just sort of skulked around in the back hallways of my consciousness – not on the main stage, but not far enough away to let me ignore them entirely.
So, I did them.
And I could write a book about the thousand little ways my heart has been pulled and poked and loved and held through the stormy seas of these decisions. But I won’t. Because some things can’t be explained without being cheapened. Some experiences are too precious and painful to lasso into words. The only thing I really want to say about this week is that there was a moment when I felt the undeniable, incomparable smile of God. AT me! Little, reluctant-to-grow-up me!
It was a hard week for sure, but I know He knows. And I really think He might even be proud of me.
He’s proud of you, too.
Do hard things,
Twelve years ago, Steve and I did the most ridiculous thing ever and bought a giant fixer-upper of a house. It wouldn’t be crazy for most people to do it, but it was crazy for us because we are decidedly NOT fixer-upper sort of people. I mean, we can paint and do surface stuff, but anything more complicated than that is beyond our ability and happiness. We consistently discovered that he would rather be golfing and I would rather be reading and so most of our non-essential home improvement projects stalled out somewhere between Home Depot and the next good book.
In spite of our reluctance to tackle upgrades, we’ve always loved this house. It has five big bedrooms and an office that I adore and a big lot on a noisy street which I also love (is there any music more beautiful than the sounds of a city waking up?) As our children began to grow and move out, other people’s kids moved in. Family dinners and noisy Movie Nights and birthday parties and baby showers all found homes in our big, un-pinteresty home. It has been the joy of my life to be a place where people gather.
When Steve was diagnosed, my future in this house grew murky. Many reasons exist as to why, but one of the biggest was the feeling that I could never take care of this place on my own. I began to look around at condos and bungalows and quickly realized I didn’t have the emotional fortitude to face that idea just yet. The real estate market in Bend is ca-razy and I have plenty crazy on my plate right now. So I settled into the home that I love and told Jesus I would trust that He had gone before me and would be there when it was time to figure out my next step.
And then, something crazy happened. I took a leave of absence in December and somehow I found a latent fixer-upper gene in my DNA! Turns out, all that time of actually being in my house and in front of Pinterest inspired me to do a few projects. And you know what happens when you do one project? Landslide. Each improvement makes the rest of the house look worse, so the list keeps growing. And soon the projects were moving beyond my skill level, requiring actual…power tools. For so many years, I’ve convinced myself I couldn’t do things like this. I’ve even convinced myself I couldn’t create a home that looked the way I wanted it to look. But I was wrong. It has been a lot of work and a a lot of asking for favors and a lot of watching DIY videos on You Tube, but now I know I can do it. I can figure things out when I need to! I can use a power drill! I can brave the aisles of Home Depot without feeling like they’re going to kick me out! So far we’ve redone our living room, dining room, one bathroom (with another in the works) and laundry room. I love this house more than ever and I also love the things I’m learning. And my point in this blog post (even though it’s taken me 600 words to get here) is: Steve is to blame.
Steve is to blame for this change even though he didn’t help with anything. In spite of the fact that he is unable to lift a finger, he is the primary human force behind every brave thing I do. For thirty years, he’s been second only to the Holy Spirit in helping me tackle the hardest things. It’s not that he says all the right things, it’s that he is the right thing. His belief in me and his unfailingly gracious response to my (million!) failures through the years has made me believe that I really can try anything. I probably can’t succeed at everything, but I sure can try it, and if I make a terrible mess of it and everyone in this world thinks I’m a loser, there is one person who’s convinced I’m not. One man, who wouldn’t want to be with anyone other than me. I mean, it’s astounding to me still. And his love has been my secret weapon for as long as I can remember needing a secret weapon.
Here’s another thing I realized this week: for the past four years, I’ve been working in fast forward – trying to do all the brave things while I have him here with me. This has included things like traveling to Europe, writing books, reaching out in new ways to people who need me, Christmas tree shopping, learning to love running, going away for a night by myself and – yep – becoming a fixer-upper. These things have been possible because Steve is in the background telling me I’m smart enough and strong enough and scrappy enough to do hard things. To keep moving. To live large. It’s amazing to me that a man in a wheelchair can be the driving force for a girl who has all her muscles. But it’s true – for me and for countless others who Steve has encouraged and believed in during his pilgrimage here on earth.
Of all the things in all this world that I treasure and wish I could keep forever, the way Steve has helped me escape the prison of fear is The Most. The biggest. The best gift I’ve ever been given. When I imagine life without it, I have to remind myself to breathe. And all of that gaping breathlessness has to be immediately turned toward gratitude or I will drown in sorrow. So I force my thoughts and words to thank our dear Father that I have Steve now and to thank Him that He will fill the gaps in the future. Already, I have a handful of friends and family who uniquely possess the Gift of Steve. They are encouraging and inspiring and, while they will never take his place, I see God putting them in place as pillars in my life that I can lean on.
If you are blessed to have someone in your life who you know would believe in you no matter what, take a minute today and thank God for that great gift. And maybe take a minute and thank them, too. Sometimes we assume people know how heroic they are, but then we discover that they’re as filled with self-doubt as we are. I think we’re created to need each other to be our best selves in the best possible way. I hope I help someone else fly someday. One thing is certain: I’ve learned from the best.
When I was young, my parents will tell you, I hated road trips. Hated. Them. They did everything in their parental power to make them a cool experience (including, but not limited to, feeding us brown sugar cinnamon Pop Tarts) but their tricks only worked for so long. Which in my case was about ten minutes. That’s when I would start asking “How long?” “How far?” “When will we get there?” “When can we stop?” “Why did we ever leave home in the first place?”
I love home.
I hate long car trips.
This season of our lives is like the longest car trip I’ve ever been on. I mean, really. The longest. Ever. And, as I mentioned in recently, it’s especially difficult to feel like Steve and I are in the same car but will arrive in different destinations.
Each morning, after I help Steve turn over and do the things that need to be done so he can gain a few more hours of sleep, I sit and soak in the quiet of the sunrise. I sometimes read my bible, but my capacity to focus on the amount and quality of sleep I’ve been getting is really limited right now. So, instead I think. And often what I think is: “How much farther?” And the answer is always: I don’t know. No one knows but God. Sometimes I’m able to sink into the security of His sovereignty, but lots of times I fight against it. I whine and wonder and “Do You know how hard this is?” and “There are not enough pop tarts in all the world to make this road trip worth it.” And when my words are exhausted and my emotions grow weary from the wild flailing, I land back at this truth: My Dad knows where we are, where we’re going and when we’ll get there. He knows. And it’s in this truth alone that I am able to rest right now. That’s not an overstatement: this truth alone.
Steve is having a rough week. He is in a lot of pain and we are trying to manage it the best we can. I won’t list all the obstacles we face in effective pain management, but they are many. ALS is not typically a pain-producing disease – but the consequence of having no muscle to cushion bones and joints is first discomfort and stiffness, which has now become full-fledged, level 10 pain. In addition, his breathing continues to weaken and grow more and more laborious. Sometimes I watch him and just wonder how he makes it through each day, but he is strong in ways I never dreamed.
I, on the other hand, have been having a good week. For no apparent reason, I feel secure and solid. I feel held. I am sticking close to this feeling because I don’t know how long it will last. If you’re yelling at your computer screen right now that I should trust that this feeling can last ALL the time, I’m going to yell right back: seasons of sorrow and frustration happen. They’re part of the trip and I don’t think they are, overall, connected to my level of faith. I think they’re mostly connected to my love for my husband, extreme levels of exhaustion and my (in)ability to carry all the things that are in my world. Even when they are connected to my level trust in God, they serve as an invitation for His comfort to meet me there (Matthew 5:4). The good days don’t last forever, but neither do the rough days and this is a great hope to my little heart.
So, I guess, this is where we are. Hard week. Strong week. Faith. Frustration. Sorrow. Security. So many things swirling right now, but God is the God of them all. Of us all.
Thank you for your prayers and love. Thank you for sticking so close to us through the stormy seasons. We love you beyond reason.