I have had a remarkable week. It has been as full and beautiful as the preceding six weeks were desperate and ugly. Some of the reasons are easy to identify – I survived a minefield of paperwork and red tape, the administrative necessities that accompany death. The headaches have finally been relenting. I went back to work, which I love. All good things, but not good enough to account for this stunning increase of peace.
Peace, I’ve discovered, doesn’t actually diminish grief and that’s okay because I’m not looking to be free of grief. I think the Bible is clear that sorrow tethers us to the presence of God in a way that few other things can. Grief is my journey right now. It’s the weight that reminds me that I was the luckiest girl in all the world for 30 years, 5 months and 16 days. Healthy grief is good for me; I’m not going to pray it away. I am, however, quite desperate to be free of fear – and that’s the power of His promise of peace.
Today I feel peace. I feel beauty in the season and the weather and in the switch to a fall wardrobe and in my heart. I’m not going to worry about how I’ll feel tomorrow. Today is enough for today.
Last night was my longest night since Steve went home. Just the longest, hardest night.
Tossing and turning, reminding myself at 12:23 and 1:37 and 2:15 that the sun would rise, that morning would be faithful to break through mourning, that it could not be otherwise because it is the law of nature and the law of God’s mercy.
I’ve read a lot about people in grief who want to stay in bed indefinitely, but that’s not me. The dark silence is deafening, suffocating. Not every night, just a few nights. But on those nights, the long term reality of Steve’s absence is palpable and powerful.
I keep looking for a strategy to avoid moments like this so that I can get on with this process and make some progress. Then I remember: this is the process and this is progress.
This is grief.
It is weighty and consuming and it isn’t heavier than the love of God, but it’s the second-heaviest thing I’ve experienced. I know that it can’t separate me from His love, but I do feel it pulling at my ankles sometimes with a strength that is surprising, wanting to drag me away with my hope. And if it were up to my muscles or intellect or emotional fortitude, grief would win without even breaking a sweat.
He is strong and stronger still. And every time I am rescued from the deep abyss, I am stronger, too – not necessarily in my ability to strategize and fight, but in my ability to rest and trust.
This is a big week ahead. I have a long list of things that need to be done and decisions that need to be made, and on Friday – the ALS Fancy Dance! It’s too early to declare that it will be a great week, but I am going to go out on a limb and say that I’ll be stronger at the end of it than I am today. That’s the ground in which I’m planting my flag on this Monday. I’ll let you know how it goes.
Every day, I am faced with a choice to see life as beautiful and full or empty and unfair. I don’t think that will ever change (I don’t actually think it changes for any of us, no matter what our circumstances.) The only thing that changes is how easy or difficult it is to make the choice and how willing I am to make it, regardless of how capable I feel.
This morning, it’s easy. I feel peace and wholeness nipping at my heels. I feel held and sustained and excited about what the day holds. Tomorrow, it might be hard again. Or in two hours it might be hard again. All I know for sure is it will be hard again. I have no control over that.
The choice, however, she’s always mine to make.
I Praise Your name, for Your unfailing love and Your truth;
for You have placed Your name and Your word over all things and all times.
On the day I needed You, I called, and You responded
and infused my soul with strength.
Psalm 138:2-3 The Voice
“Hey sweet friends – could you do happy hour today? I have a big favor to ask.”
I remember the very day I sent the text. I don’t know why it was so hard to do, but it was SO hard to do. Very quickly, Deanna and Gretchen each responded with such happy yes’s that I felt better about the conversation that would take place at my favorite restaurant with my two wonderful friends who I felt were so perfect for the task ahead.
Quick backstory: Two years or so ago, because of changes in Steve’s condition and the need to accommodate a lot of machinery nearby, we moved him into a hospital-type bed in our bedroom and I had a little bed beside him. After sleeping together for almost thirty years, that was a really hard day. But I took solace in the fact that he was still at home and not in a facility and that we were still together, even though our room was nothing like it had ever been. The more ALS took over Steve’s body, the more it took over our room. I eventually moved many of my things to the guest room as closets and dresser drawers began to overflow with medical supplies.
In December, we called in hospice and I knew the end was approaching quickly. That’s when I started thinking about what life would be like without him. There are a myriad of things you cannot know and cannot prepare for ahead of time, but the one thing that kept haunting me was the idea of the Very First Night. No matter how hard I tried, I could not imagine sleeping in our room with Steve’s bed empty. I also couldn’t imagine moving all his stuff out myself. It all just seemed so painful and impossible. That’s when I remembered something I had learned along the ALS road: Fix what you can fix and leave the rest alone. This, I reasoned, was something I could fix. And that brings us to my text to D & G.
They met me for happy hour on a gray spring day and I told them of my fear. And then I made my big ask. They listened and, tears streaming, said, “Absolutely. We can do this.”
On the day Steve died, Whitney made a few important calls and one of them was to Deanna and Gretchen. That phone call launched Operation De-hospitalize Bo’s Bedroom. As I sat and visited with my family and our pastors, my friends arrived and quietly – almost invisibly – began creating a beautiful space for me. I had already purchased a bed which had been waiting in storage and my friends had chosen everything else: sheets, comforter, pretty pillows and throws, a cushy reading chair, fresh flowers in vases, new towels in the bathroom (it was important for me to choose friends whose taste and style I trusted.) They worked a long time, cleaning, decorating, ministering through their gifts. When it was ready, they came and got me and I…gosh, I’m not often without words, but I’m not sure what word to use for what I felt. I looked at that beautiful spa-like retreat and I was overwhelmed by the goodness of God to me through the hands of my friends. I felt peace. I felt security. I felt like maybe creating a life on the other side of ALS was an actual possibility.
27 days later, I can say that every time I go into my bedroom – I mean every single time – I am amazed that I get to live there. It is a haven for me in a difficult world. And it is something that is my very own and I like that. The room that had represented the “us” of Steve and I went away a long time ago, there was nothing I wanted to preserve from the ALS season, so this very fresh, very new start has been one of the most life-giving things anyone has ever done for me.
If you are a friend wondering how to help someone who is in a similar situation, please feel free to send them this post and say: If this is something you’d like to happen, I will help in whatever way I can. If you are someone who is facing the loss of a spouse, feel free to send this post to a friend or two and say: If I give you the money, would you be willing to take this on for me? OR, if you’re more concerned about making the choices yourself, you could buy the things you’ll want and ask a friend to store them for you until the time is right and then with one phone call, they could come in and make all the changes so you don’t have to (I know you hate to ask. I know you feel like you’ve already used up all your favors. I know you’re so tired of being the person who needs help that you’d love to just grit your way through something as personal as this, but please trust me – your friends would love to do this for you.)
I know it’s super weird to put pictures of my bedroom on the internet – but, hey – I’m a renegade like that and these are terrible cell phone pics so it’s almost like not really seeing it at all. Here you go:
Listen, the one thing I know for sure is that I don’t speak for everyone going through sorrow. I don’t even speak for anyone except me – grief is so subjective. Some people may be yelling at their computer right now, “I could never do that! I could never let someone take over such a personal task.” I get it and I respect it. But I do think there are those who have been through a long, hard battle with a sick spouse and they would love to have a fresh, clean space to call their own but are unwilling to ask or maybe even unable to pay for it after all the other luxuries they’ve purchased like medicine and doctor bills and such. My dearest dream is that this post would be a head’s up to the armies of friends out there about creative ways to give hurting people hope on the hard days. Do with it what you will.
With heaps of freshly remodeled hope,
It’s been two dozen days since Steve flew away home. Since then we’ve had a memorial, a graveside service, escaped to the beach for a week, and returned to the land that we love. Here’s what I’ve learned so far.
- I’ve never felt as much pressure to make something beautiful and right as I did Steve’s memorial service. I wanted so badly to celebrate his life well. Somewhere in the mix of planning and stressing I realized I was feeling it was my last chance to honor Steve and it occurred to me how silly that was. We will always remember and celebrate Steve. Our lives are a reflection of him and in actuality, the days and generations ahead will be a much more authentic retelling of the story of Steve than one service in a church could ever be.
- Having said that, I loved his memorial service. The music, the people who shared, the pictures of his life. All of it was beautiful and meaningful for me. I didn’t expect to love it because it is, at the heart, a really sad event – but I did love it and last night I worked up the courage to watch it for the first time and I felt so close to Steve and to the people who loved him like I did.
- Grief is physical. It’s emotional,too, but I had no idea it would wreak such havoc on my body. For me, this has manifested in the form of fairly relentless migraines and just generally feeling sort of flu-ish. I think the clinical term for what I’m feeling is “cruddy” (I actually think it’s call the Lethargy of Grief, but tomato, tomahto, you know?) I read parts of A Grief Observed while we were on our beach getaway and CS Lewis describes it as “feeling concussed,or in a slight state of drunkenness” and I would agree except a slight state of drunkenness sounds way more pleasant than the headaches I’ve been wrestling with. I ended up seeing a doctor in Portland about the whole thing and as of today, I think we’ve got it solved, but it was honestly one of the more frustrating issues to deal with immediately after losing Steve. (Also worth noting: I’m loaded up with lots of helpful remedies including essential oils so no need to email me about that. )
- Our time away at the beach was…rough. We were sad, several of us were sick and all I can really say is that nothing worked much like we had hoped. However, at the end of it all we decided we would be glad to leave that week and some of our sadness behind and return to the safety of home. Sometimes what you think will be a refuge becomes a dumping ground instead and that’s okay too. I still believe we’re better for having gone, and we look forward to happier trips in the future.
- My goal in the weeks following Steve’s death was to try to process the past four years and build some sort of plan for my future. I am, by nature, a rational thinker, so I reasoned I would be able to figure this thing out. But when I arrived at the doorstep of that pursuit, I really didn’t know where to start. Make myself cry? Not cry? Sink into sorrow? Sink into memories? Look on the bright side? I was like a cross-eyed archer just wildly shooting arrows, hoping one would hit something that should be hit and not something that shouldn’t. I turned to a few books and found some helpful ideas and some not-so-helpful ideas and my takeaway is that, much like falling in love, grief is wildly subjective. We all go into it carrying a different suitcase full of emotional triggers and layers of history that create the lens through which we see our journey of sorrow. I’m just now beginning to figure out what works for me and I wouldn’t dream of giving advice to anyone else except for this: be gentle and generous with yourself.
- I had four years to get used to the idea of losing Steve, but I look back on the moments and days following his death and see clear evidence of shock. For instance, two days after he died, I sat down and wrote this post, detailing his last day on earth. I cried while I wrote it, but it wasn’t difficult for me – it was cathartic. Just a few days later, however, I find I’m unable to go back and read it without the adrenaline and anesthesia of shock that was numbing my heart in that first week. I joked to my sister recently, “I think I like shock. What I hate is when the shock wears off.”
- Sorrow really does come in waves. I’ve read it a million times, but now I’ve lived it about a hundred times. It builds and bubbles and then hits full-force and just when I think I’ll drown in it, it begins to recede. I don’t know if it’s true for everyone, but for me the wave runs its course in about twenty minutes. It’s not that I feel happy in twenty minutes, but I do feel like I can breathe and think clearly. Knowing how the cycle works for me (at least at this moment) has helped me know what I can control and make peace with (or get help with) what I can’t. I’m infinitely grateful to the people who kept their cell phones on 24/7 and took my desperate phone calls when I felt I couldn’t surf the wave on my own. Infinitely grateful.
- People are amazing. I mean, really and truly amazing. I would tell you some of the creative, intentional ways they cared for us during this season, but I’m going to save that for another post. I have, however, been taking copious notes so that I can remember the brilliant ways we’ve been loved and served so that I can do the same thing for others when they travel through the shadowlands.
I know this is the most random post ever, but that’s how I’m thinking right now and I can’t seem to jolt myself out of it. In conclusion, I want to say that I am well. I feel secure and loved. My memories of my life with Steve are a warm blanket around my heart, rather than a painful reminder of what I’ve lost and that’s a relief to me because I wasn’t sure which direction that would go. Our home feels safe and peaceful and it’s really strange to be able to come and go as I please. Not bad strange and not good strange, just strange. I am taking a month or so off of work and I can already tell I’ll be really ready to get back into the swing of things. My kids are also well and I am so proud of them.
So, that’s the update. Thank you for caring, loving, calling, texting, facebooking and just generally being the most awesome army in the history of war. I love you.