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Yesterday ended my intentional time of rest. As Ann Lamott says, "Almost anything will work again if you unplug it and turn it back on you, including you." Here is a journey of my last 3 1/2 months in pictures. Change is never easy. And throughout this time of rest, I continued to work through grief. Letting go as I was able so as to take hold of what might be next. Along the way, the Mindful Path to Self-Compassion was my companion. I leave you with its primary mantra:
May you be safe. May you be content. May you be strong. May you live with ease.
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I have cried buckets of tears, rested for two months, drove over 2000 miles, downsized my instrument collection of one piano and a set of congas, cleaned out my closets of unused items, parted with Pete's wheelchairs, and poured my thoughts into 168 pages in my journal. And in so doing, I have uncovered joy. Last night I sat outside after a huge thunderous rain storm and gave thanks to God, the ground beneath me and the Mother of us all, for being present with me. She has shone enough light on my path for me to see my way forward and my way inward and my way outward.  Stella belongs to dear friends Jeff and Chelli. But she loves me and is determined to teach me all about dog kisses. Pete used to always say that I had what the French call joi de vivre, a life giving joy that walks into a room before I do. And although I was quick to joke, to laugh and to make light of almost anything life was throwing at me, I had a hard time finding this joy within myself. I’m not sure when this joy started to hide but I have a pretty good idea of what started to pile on top of it. For me in the second year of grief as a widow, I began to see more clearly the pain I experienced as a caregiver. I started to have more words for the struggles I had navigated. I could feel again. And the feelings that swarmed in my head, feelings of anger and frustration and regret and even bargaining, finally settled into my body in the form of sadness and depression. And as my therapist explained to me, once we feel sadness in our bodies, we can no longer run away from it. Sadness takes up residence and it becomes a companion. And this companion has been helpful, even if not always embraced. My companion named Sadness came with tears that were new and surprising. It was if this new round of tears washed me, cleansed me and rinsed away years of pain.  A few days away with my "sistas" Anita and Dawn. We all took turns being captain. That sounds great, right? Having years of pain washed away. But with the pain went memories and experiences and love and promises made and kept. Staying in those tears was an essential part of my healing. I needed to feel the loss to be able to name it. And once I could name it, I was invited to let it go. The invitation was open and unending. It was mine to accept, in my own timing. Letting go of a lifetime of life, letting go of the past season of life is not easy. In fact it’s downright terrifying. I was reminded of an element of a ropes course I’ve done several times. Have you been on a ropes course before? High up in the trees, strapped in for safety with ropes and wires and carabineers. If you can imagine holding onto a rope attached to the high wire and moving forward there is another rope ahead – but it is just far enough away that I must let go of the rope I am holding onto in order to take hold of the one in front of me. And in order to move forward, to make it to the next ledge, I must let go of what I have and reach hopefully and trustingly for the next rope. None of us want that choice. We like what we have. We are accustomed to what we have. And who is to say the pain we experienced with what we are holding won’t happen again with the next thing? You can see how cyclical my thinking got while I imagined letting go of the life I knew. This letting go I believe is what they call “acceptance.” Accepting that the life I had is no longer available to me. I knew it in my head. But once my heart felt it, there was no going back, only going through and moving forward.  Perhaps history will say I found my joy in Hope Springs, NC at the Wild Goose Festival. This is a hard piece to write because I will most certainly feel sadness again and again. Grief is a journey and I am most certainly not at the end of it. And if I’m honest I think I’ve only glimpsed a little bit, a few feet or so ahead of the next leg of my journey. But it feels lighter and freer. And I could go on and on, definitely for a different time, about how I am still figuring out what I want or need and I have a terrible time asserting my wants and my needs still. I am not naive to think this newfound feeling of joy is an end. But it is gift enough to say it aloud.
So here is my truth today - I have cried buckets of tears, rested for two months, drove over 2000 miles, downsized my instrument collection of one piano and a set of congas, cleaned out my closets of unused items, parted with Pete's wheelchairs, and poured my thoughts into 168 pages in my journal. And in so doing, I have uncovered joy. Thank you God, the ground beneath me and Mother of us all.
It was Mary Oliver’s poetry that often provided me a brief sabbath when I was “breathing just a little and calling it a life.” For me, poetry is one of the things that helps deepen my breath, slow down enough for the muscles around my lungs to relax enough to expand. Poetry, for me, opens windows in ways that no other kind of writing does. It’s not just the exactness of the language of poetry that gets me, it’s the specificity of the view. It’s the opportunity to zoom in on just one thing. Poetry provides a tuning of sort for my own lens. After adjusting my lens to accommodate the singular picture the poet is showing me, I am able to see my own life better.  My grandchildren and friends swinging on a winter Saturday. I don’t know about you but I have a tendency to get overwhelmed. I try to take in the whole picture – whether it is the government shut down, or the death toll in Syria, or the full on building project happening at my church, or the enormity of the grieving process 18 months after losing my husband. And while the bigger picture is important, it isn’t helpful in day to day walking. We live our life in steps, not in bigger pictures. We live our life in the specifics.  In a twist of events, one of Pete's assistive devices was returned to me last week. Plenty of tears as I paused to have a seat in it. When my lens is adjusted on the specifics of now, the overwhelming stresses and realities of the world seem to break down into doing the next right thing. And I almost always can figure out how to do the next right thing. Pay the bill. Make the one phone call. Respond to an email. Say good morning to my neighbor. Water the plants. Do the laundry. Go to the gym. Eat some vegetables.
And with those next right things, I find my breath has expanded and I am living once again.  It is the 8th day of the 12 days in the Christmas season. The 8th day of celebrating the birth of Jesus, who is the light of the world. The world did not change immediately with his birth nor did it change immediately with his death and resurrection. For sure, light came to the world – but there was and still is plenty of darkness. How do we traverse the continued darkness in our world? Here is an excerpt from the chapter, “Whistling in the dark.” I was starting to dwell on the “can’ts” of my life. Or, more correctly, the “can’ts” of Pete’s life. Pete can’t drive. Pete can’t carry things across the room, like a cup of coffee or our granddaughter, Julia. Pete can’t take pictures because his hands are too shaky. Pete can walk but not too far; Pete can’t walk to the restroom at the movie theater. Pete can’t walk on the beach. These little losses were creating a growing darkness in our lives. The losses weren’t just to his body, but to how we related to one another.  This logo for Amnesty International has captured my imagination this season - a light shines even when it is surrounded by barbed wire. I heard Sanford encouraging me to listen to the darkness in our lives. Listen to the silence that is found in the darkness. Sit with the silence long enough for my eyes, my physical sight as well as my emotional understanding, to adjust to the darkness. There was light, he said, even in darkness. Give it time. Be patient with the darkness. We would be able to cross through this dark place. One of the darkest places in the Christian story is the empty tomb. In Luke’s gospel, the women enter the tomb expecting to find Jesus and he isn’t there. They tell the others, who don’t believe them. Peter, one of the disciples goes into the tomb to see for himself, “When he bent over to look inside, he saw only the linen cloth. Then he returned home, wondering what had happened.” I can relate to “wondering what had happened.” When life does not go as expected, when the steps we thought we were supposed to take lead us to a dead end, when life throws us a curve and we can’t figure out what to do next. Here is an excerpt from the chapter in my book called, Christians believe in resurrection. Christians believe in the resurrection. For sure it’s not an easy doctrine to believe. I mean after all, when was the last time any of us saw someone rise from the dead? Wherever you are in your life, with whatever dreams or plans you have - as you find yourself in darkness, my hope is that you will have the courage to stay in the dark long enough to wait for enough light to cross to the other side.
My prayer is you will believe in resurrection - believe that even in the darkness of the tomb, there is new life - a whole new life on the other side.  Today would be my 23rd wedding anniversary. I’ve lived nineteen months without “my person.” In those nineteen months, my grief has manifested in several textures. It has been raw. It has been fear filled. It has been angry. It has been insecure. It has been clingy. It has been heavy. It has been light. It has been colorful and it has at times been black and white. For all the ways I have grieved Pete, I am thankful. While reading Gerhardt’s new book, Swallowed Up, I was yet again affirmed that we all grieve differently. None of our losses are the same. She graciously offered me this paragraph: “Maybe you’re reading this book and you have more reason to feel abandoned than I do. Maybe the person you loved and lost left you before they died. Maybe they’d stopped trying to love you even as you loved them. Maybe they died by suicide and you can’t shake the feeling that they just wanted to get away from you. I can’t speak to your pain with authority or experience. You’re probably feeling that right now, listening to my simple story and saying in your head, “you have no idea, girl.” You’re right. I don’t. I’m sorry. Maybe you’ll find some comfort in knowing God’s been where you are. And maybe it’ll bless you to know that when God felt abandoned, God did a lot of crying.” When I read that paragraph, I put the book down and cried. And I knew God was right there with me crying. And none of this was new. I had cried and had known God was right beside me crying many times. But this author had faced me square on and she saw my grief. She saw that my grief was different than hers. She saw me. And in that moment, this book grew arms and legs – arms to hug me and legs to walk just a little bit ahead of me as if to say, “come on, you can keep going.” Gerhardt says, Swallowed Up is “in part, a book about a girl who decided in the face of death, that she didn’t want to die. That’s my grief story, and I’ve had to choose it again and again.” I haven’t written a lot about the deep sadness I have felt since Pete’s death. I guess I haven’t written a lot about it because it’s sad. And I wonder what limits people might have for sadness. I haven’t written about it because some of my sadness has questioned the value of life and I didn’t want people to reach out to me and try to talk me out of my feelings. Here’s what I know this side of Pete’s death – thinking about dying is a lot more normal than I ever thought. Considering the idea of calling it quits is a reasonable, critical thought when faced with having to live without your “person” for the rest of your days. Thinking about dying is sometimes easier than thinking about living. Thinking about living is hard. And then once again, this book stepped out in front of me and said, “even if you don’t struggle with the impulse to die, you probably find yourself tempted to be less and less alive. We mourners get out of bed later and fall into bed earlier. We stay in more. We go out less. We talk to fewer and fewer people. Maybe we eat less. Maybe we eat more but stop paying attention to the taste. We take fewer showers and fewer risks." She’s right. All of those things have been true of me. But her grief story called out to me to “stay alive.” When our instinct is to "respond to death with death. To stop seeing. To stop exploring. To stop doing. Stop feelings. Stop wondering. Stop dreaming. Stop wanting. Stop connecting. Stop loving.” I found her encouragement to “stay alive” to be strong enough to use as a stepping stone. Right foot. Stay alive. Left foot. Stay alive. But what does that mean? That’s the best part of her book. She lists dozens of big and small things that are ways we “stay alive.” Here are some of my favorites: “Stay alive means – Life is love. And loving after loss feels uncomfortable and awkward. Loving after loss feels a little like faking it and a lot like making hard choices. Loving, or just plain facing the day after loss feels a lot harder than I ever thought it would. I’m so grateful for Gerhardt's story, for her honesty, her vulnerability.
This book is an unapologetic, faith-fueled journey through heartache. I commend it to you or to a loved one who may need a companion alongside heartache. Get your copy HERE. I used to love them. Pete and I were at Disney eons ago and I sort of tricked him into going on Space Mountain – by tricked I mean, he didn’t know what the ride was and I left out details while we stood on line. And then the moment of truth came when he realized he was getting into a little cart that not only was on rails but the rails were headed into the dark. He tells this story way better than I ever will. The bottom line for me was that he stayed on the roller coaster with me… that day and all the days that followed. It has come to my attention recently that I don’t like roller coasters anymore. It seems like the average adult body would natural reject something that violent – aging knees gripping for something steady, backs that go out of line a lot easier than when we were younger and then there’s the lurching ups and downs of a stomach that knows there will be consequences to such ups and downs. I prefer to stay off roller coasters.  Last week's ride of life included a flat tire in the middle of the day. But the ride of life? The roller coaster of life? We don’t get to choose the ups and downs. I’ve been meditating on a Frederich Buechner quote this week, “Here is the world. Beautiful and Terrible things will happen. Do not be afraid.” 13 words. He said all of that in just 13 words. Here is the world – up and down we will go. Sometimes as expected but most of the time unexpected. Our knees will grip, our backs will bend and our stomachs will lurch. Beautiful and Terrible things will happen. Recently, a truly beautiful thing has happened for me. I’ve met a beautiful, gentle man. And with him came a healthy amount of emotions. Expectation. Elation. Delight. Comfort. Fear. Panic. Wonder. My heart was crowded for the first couple weeks. All of these emotions had begun to mingle around in the living room of my heart, mingle with all the other emotions that had already made a home there. Contentment. Happiness. Sadness. Anxiety. Depression. Joy. Full joy from a life that has been filled from having been loved and having loved. My heart was crowded.  Mateo found a new ride at the farm last week. Over time, I’ve rearranged or redecorated a bit to accommodate the new emotions that are steadily mingling with the old ones. The crowded feeling has subsided – to keep the metaphor of my heart as a living room, it is as if the emotions have stopped their initial “mingling, small talk” with one another and now have sat down to have full on conversations. And those conversations sometimes create a roller coaster. And again, I used to love them. Used to. The contentment of who I have become is discussing the differences and similarities of the comfort I am beginning to feel. The anxiety that is grief is offering explanation to the new fear I feel as I open my heart again. The joy that is true in my heart is comparing notes with the wonder that has just entered the room. Up and down. Up and down. These conversations are rich and complex. I am not 24 anymore, like I was when I met Pete. I cannot un-see the terrible things that can happen in this world. Ernest Hemingway said it this way, “This world will break all of us. Some will become strong in the broken places.” Terrible things can happen. Terrible things will happen. My heart has broken in so many places. And while I want to see the light that the cracks lets in, more often than not, I just see a mangled heart. And this mangled heart is what I’m left with. It is not a “new, young, vibrant, ready-for-the-roller-coaster kind of heart” anymore. It is a fragile, bruised piece of flesh that mostly wishes the roller coasters of life can be avoided. But at the same time, my heart has hard earned resilience for what may come. So… to this beautiful, terrible world, I say, “Bring it. Apparently there is room for you in my heart.”
You know how everyone asks, “Are you OK?” and we all say, “Yeah, I’m OK.”? Well, I’m not OK. And I’m OK that I’m not OK. My husband died 1 year, 2 months and 19 days ago. He was my partner, my lover, the father of my children and my very best friend. So, no… I’m not OK. I hope you’re OK that I’m not OK. Several months back, a couple people at church suggested we read the book, “It’s OK you’re not OK,” by Megan Devine. The subtitle is “meeting grief and loss in a culture that doesn’t understand.” Great idea! Let’s read it and talk about. We threw the idea out to the larger community and more than a handful of us gathered with book in hand and grief in our hearts. The discussion was rich. We slowed down the pace and allowed for lots of silence. We faced our grief and looked at each other in the eyes. We cried. We stumbled as we tried to find the right words. There was even laughter. There was understanding. We were not OK. And in that room we were all OK that we were not OK.  I helped a woman in my congregation move to hospice care this week. Her daughter gave me this flower from her garden. The author of the book, Megan Devine, who lost her husband suddenly, says, “grief is visceral, not reasonable; the howling at the center of grief is raw and real.” As I write these words, my grief is raw and real. And she’s right – the center of grief sounds like a howl. Two days ago, my grief didn’t sound like a howl. It sounded buoyant and hopeful, while still being melancholy and mindful. Two days ago a dear friend was “married again.” I’ve chosen my words here carefully. For some reason I prefer it to “re-married.” Her first marriage ended when her husband died from cancer. This friend has been one of my most trusted confidants this past year. She and I have discussed at length the consequences of death. Devine says, “Death doesn’t end a relationship; it changes it.” The consequences of a marriage that ends in death is that the marriage itself doesn’t ever end. The love never ends. It changes. We live with that love for the whole of our lives. Even when married again. When she told me she was engaged, I wept on the phone as I muttered, “this is a miracle. You know that, right?!” She did know. Her heart has healed in such a way that it is both strong enough and elastic enough to love. Strong and elastic. How did such a miracle happen?  Meanwhile, we've been systematically deconstructing our sanctuary in anticipation of demolition. And now two days after her wedding, my howling has come back and I wonder how did her howling stop? When did it stop? Or maybe didn’t. Maybe the howling at the center remains but we move away from center over time. If that’s true, how far away from center do we have to be in order to not hear the howling? And our ability to hear the howling, does that have anything to do when you’re ready to marry again? Right when I think I’m doing OK, I come up to questions like this and I feel so very close to the howling that I think I’ve barely begun to recover from Pete’s death. But Devine is right that we live in a culture that simply doesn’t understand grief. Although we don’t say it, we really think there is a time stamp on the grief process. We are uncomfortable that visceral emotions continue well into the second (and I’m told third, fourth, fifth year…) I’m deeply grateful for the faithful friends I have who are OK that I’m not OK. But I would be lying if I didn’t admit that the day after I’ve cried or shared my howling grief, I wonder if my friends secretly wonder if it’s OK that I’m not OK. I wonder if I’ve made my world uncomfortable by grieving. I wonder if folks wish I would be OK because that would make our relationships easier. But I’m not OK and I just can’t will it into being. I can’t fake this, not this time, not with something this important. I can’t rush the healing of my heart. I won’t do it. And so I’m not OK.  I've had coffee with these women every Thursday am for 12 years. They're OK that I'm not OK. Devine asks, “who knows what kind of world we might create when we turn to fully face all the ways our hearts get broken? What things might change? What kind of world might we create? When the full expression of what it means to love – which includes losing that which we love – is given room to unfold?”
For those in my life right now who have watched my face contort with tears, for those who have encouraged me to share my emotions, for those who have dared to listen for the howling at the center of my grief, and for those who are OK that I’m not OK, I am deeply grateful. It’s been months since I’ve blogged. I’m writing but I don’t have anything clear to share. I could talk about the fear and excitement of walking into whatever is next, which is to say walking into this moment and the next and maybe even the moments that will be called tomorrow. I could share how grateful I am for the life I have built with Pete. A dear friend reminded me that I am a builder. A builder of community, of networks, of programs, or businesses, and most important to me, my family. I’m really proud of what I’ve built, personally and professionally. It’s actually a really hard act to follow. This moving on part of grief is less emotional and more exertion. I’m exerting energy in ways I have not before – like using new muscles. Like the muscle that is attracted to people other than my husband. Or the muscle to throw a party on my own, or invite people to dinner when it’s just me. I’m exerting energy to protect my time for my own sake and not for the sake of marriage or family. I have to figure out how to eat just for me, to cook just for me, to shop just for me. It’s a mew kind of workout being me… because I’ve been “we” for a very long time. And don’t get me wrong, some of this exercise, a lot of this exercise is enjoyable, meaning I am finding joy in a lot of my days. And I’m even grateful that I cry a couple times each day too. I’m grateful that my body wants to feel all of it still. I’m grateful that I’m strong enough to feel all of it still. But all of the “feels” are exhausting.  My sisters came for the weekend of the anniversary of Pete's death. I’ve never been one that lingers in bed in the morning. I wake like clockwork around 6am. And in the past, I got up, poured the caffeine and moved into my day. I read and journaled in the mornings. I used to do a lot of my thinking in the morning. But these past months my body is too tired. I still open my eyes around 6am but I often roll over and open them again at 7:30. And here’s my big secret – I waste time in the mornings! And by waste time, I lose 45 minutes looking at facebook marketplace. Or I fiddle between three websites that sort of have to do with things I’m thinking about – like finding a rug for my bathroom or figuring out why skin on my arm all of a sudden looks like crepe paper or why my computer has no more memory for the update. And before I know it, it’s 9:20am and I haven’t journaled and it’s time to go to the gym. So, I write for half a second, get to the gym where I watch an episode of Grey’s Anatomy while on the elliptical. I lift; I stretch. And then I go about my day which is always accompanied with the work of grief, which is to say the work of living after loss. This is what I mean by grief accompanying me. When I sit alone in stillness for three minutes, in my car, at my desk, walking to the coffee machine, I am acutely aware of the absence of my former life. It’s not just the absence of Pete (although that’s definitely there too). My life does not feel the same. I do not feel the same. It’s a haunting feeling I guess. All of life is new. Same surroundings. Different Beth.  I had some work done on Pete's guitar. Here I am reunited with it. I cry a couple times each day when the haunting feeling shows up. Then I go through a series of helpful and unhelpful thoughts like – I don’t know what I am doing. How did this happen? I miss him. I’m grateful for him. Pete, did you see that? Yesterday was a good day. Damn, this is hard. I’m so tired of crying. I’m so tired, period. I don’t think I want to do this. Can I call out sick? I don’t want to call out sick, then what will I do? What would be helpful right now? I want a cup of coffee. I want to have a cup of coffee with Pete. You know what, screw that, I want someone to want to have a cup of coffee with me. I’m fun to be with. And I’m cute.
The particular combination of those thoughts take about three minutes and then I shake my head – yes, I literally shake whatever that was off. I exert the energy to move into the next moment. As best as I can tell at present, the “work of grief” is to engage the feelings and questions as they come. The hard work of grief then is to not push them away or bury them. Feel it all - love and loneliness, sadness and serenity, fear and hope. Entertain all the questions - of where I am and where I have come from? Who am I and who will I become? How did this happen and how will I move on? I remember the scripture used as a toast at mine and Pete’s wedding, “No eye has seen, no ear has heard, no mind has conceived what God has planned for those who love God.” (1 Corinthians 2:9) History tells me this verse is true. I would never have conceived what God had planned for me up to this point and so it’s wholly possible I have yet to conceive what God has planned for me in my future. Sometimes I get caught comparing myself to others – others who have lost a spouse and others who are my age or others who are in similar careers or anybody really. I worry about whether I’m doing things “right.” And of course everyone would tell me there is no “right” way to grieve. Everyone grieves differently. (That’s true by the way.) The only “wrong” way to grieve would be to avoid the work. Grief work is not easy however and so sometimes putting off the work or taking a break is a form of self care. But ultimately grief has a job to do and it is itching to get to it. Grieving is not an emotion; it is a process. Grieving is a form of excavation.  Mateo "fixing" his front loader. One of Mateo’s first words was excavator. It sounded more like “ekavater.” He loves all kinds of trucks but we’ve got to admit that the excavator is a cool truck. The excavator has so many moving parts – the boom, the dipper, the bucket, the cab. It reaches. It extends. It’s sharp. And it’s small enough to work around a site. It’s an efficient truck. I was reading one of his favorite truck books just yesterday that said, “Before we start building, we need to get the ground ready for building. And sometimes we need to take down trees or old buildings. Sometimes we need to make the ground level by adding dirt. The trucks do most of the work at this stage. Backhoes, breakers, bulldozers, and dump trucks work together to excavate the land.” Yep, that’s the work of grief. Grief will take down trees and buildings. Grief will tear up old foundations. Grief will add new dirt. Ultimately grief will prepare us for new construction. If I let it, grief will excavate a space within me that is vast, even cavernous. And if need be, grief will whittle a hole just big enough to climb out of myself. Grief will and has discovered new corners, new closets, new nooks within me that would have remained undiscovered if not for courageous excavation in response to loss. And here is my most recent learning about this excavation process. I have the power to pause it. If I cling to the love I had with Pete, I pause the process of excavation. If I settle into the sadness of missing him, that too will pause the process of excavation. And there is nothing wrong with loving Pete still or missing him. But the clinging to it is what pauses the excavation. The irony is not lost on me that I am leading a congregation right now who is about to tear down their church sanctuary in order to build another on the same site. The footprint of the new sanctuary is not quite the same so I believe there will be backhoes and breakers, bulldozers and dump trucks who will work together to excavate the land, making it level for the new construction. I’ve promised my congregation a “tearing down the sanctuary” party with chili and beer and a fire pit for s’mores or hot dogs. Most will experience a sort of holy sadness. There will be a recognition that what once was there was beautiful and sacred and meaningful to so many people over several decades. However, along with holy sadness will be holy hope. There will be a recognition that the ground beneath is strong. And we are courageous.
If we let it, grief will excavate a space of which no eye has seen, no ear has heard, no mind has conceived. I attended a Disability and Youth Ministry conference last week. My colleague, Erin Raffety was one of the keynote speakers and my sister, Kristin was on the practitioner panel. I hadn’t put a lot of thought into my attendance personally. I was there primarily to support Erin and Kristin and to learn about the things they treasured. But I was in for a surprise… In the opening worship service, four people shared testimonies about how the church has influenced, aided and sometimes hurt them as it relates to their varying abilities. Enter JJ. JJ wheeled up to the podium. Before he spoke a word, I began to cry. I tried my very best to hold my tears to a minimum, squeezing them between my heart and my jaw. My face was tense as I fought to maintain control of myself. What was happening? Apparently, I had forgotten that I lived with and loved someone who rolled through life with a wheelchair.  Pete and Julia rolling along. It’s not that I had cognitively forgotten that Pete used a wheelchair for his mobility, it’s that since his death I haven’t been thinking of his disability. When I think of Pete, or when I grieve Pete’s death, I mostly focus on the loss of my closest, dearest friend. I miss his partnership. I miss his touch. I miss having him to come home to at the end of the day. I miss his jokes – well, most of them. But I don’t miss his wheelchair – or the symptoms that came with Secondary Progressive Multiple Sclerosis. I don’t miss his fatigue. I don’t miss him not being able to transfer from his wheelchair to another chair so that we could sit side by side. I don’t miss him not being able to dance with me. Truthfully, since his death, those things don’t describe Pete anymore. For the first several months after his death, I have had “encounters” with him. I have felt his presence walk into a room. In these encounters, he stands just over 6 foot tall. He has held me, danced with me and walked beside me.  Pete at our rehearsal dinner, laughing and making people laugh. So back to JJ. He shared this experience of his journey through life with a wheelchair. He grew up in a church that did not have an elevator and people used to carry him up the steps so that he could get to the sanctuary. This all seemed just par for the course for him. It’s how they did things. He didn’t go into how uncomfortable it was – although I imagine it was. He didn’t talk about feeling left out – although if no one was around to help him up the steps, he was literally left out. Instead, he said told a story that over time, the congregation began to age. And the pastor called for a capital campaign to raise money to build an elevator. And here was the reason: our members are too old to carry the caskets of our members up the steps to the sanctuary. The church felt it more important to have an elevator for dead people than they did for JJ. A damn broke in my mind and I was flooded with memories of Pete’s limited mobility. I remembered trying to figure out where we could go to dinner based on whether they had stairs. I saw us sitting at home, watching endless hours of television because he was too fatigued to go out. And I remembered hours of worry as I monitored his symptoms and questioned what was happening to him.  Pete with Lucia, Erin's daughter. I had forgotten that living with disability is something that still very much lives inside of me. The needs and concerns of those who are differently abled matter a great deal to me. Their stories remind me of worry, anger, shame, guilt, sadness. And they also provoke in me resilience and contentment, joy and relationship.
Being married to someone with a progressive, debilitating disease forever changed me. I learned compassion and mercy in ways I would never have. I learned to advocate for people who are different than me. I learned to let go of thinking we are in control. I learned to be more welcoming, not just of others but even of myself. Mostly I learned to be aware. Aware that life is fragile and therefore precious. I miss how living with someone who wheels through life made me aware of others differently abled people. Awareness is a treasure all by itself. I thought I was going to the conference to learn about the things Erin and Kristin treasured. Instead I was reminded of what I treasure. |
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