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The Beauty in the Ashes

In April 2020, at the age of 43, I was diagnosed with ALS which comes with a 2 to 5 year life expectancy. Now, at two years of ALS, I could list a million things I hate about this disease. However, were it not for ALS, I may not have ever experienced many of the transformative gifts that I have been given. Or maybe I would have. I guess we'll never know. These are the gifts of ALS. This is the beauty we are finding as we sift through the ashes.


1. Partner. Kristy and I have been married for 19 years. Since day one, I have looked forward to growing old with this girl. I’ve always imagined us sitting on our porch, drinking our coffee, rocking our gray hair in our rocking chairs. It seems that ALS is going to steal that dream from us. However, over these last two years I have found a deeper relationship and connection to, and love for my friend, my life partner, my wife, my person, my Kristy. Through the past 2 years of this this disease, we have

journeyed to the utter depths of our souls


and when we got there, we found each other waiting with love. The connection to her that I now experience is unexplainable. I have never been this known by anyone. Nor have I known the depths of another’s soul like this. Perhaps we would have developed this connection over the next 30 years of life together. I really don’t know. But to be able to experience it now, at just 19 years of life together, is a gift. And we do sit on our porch together now, and my beard is gray, so my dream isn’t really dead. It’s just coming to pass a little sooner than hoped for. I would not trade this for the world or even my health.


2. Children. The most cherished part of my days is bedtime. My kids have a rotation of who puts me to bed each night. The bedtime routine is time consuming, taking anywhere from 25 to 45 minutes. It is during this time when we are completely present to each other. We talk about our days, our hopes, our dreams, our fears. We laugh. We cry. We hug. I have a deeper connection and relationship to, and love for my kids. I am being given a front row seat to watching my children mature and grow through one of the most difficult times of their lives, and they still all live with me, so I get the honor of walking along side of them. I never dreamed that I could have this deep of a connection with my kids as teenagers and it is beautiful.


3. Parents. I have always had a fairly close connection to my mom and dad. However, I now have a deeper relationship and connection to, and love for my mom and dad. We spend more time together now than we have in years and it is amazing. We've always been good with each other, but like many families, we had unsaid stuff between us. Now, it’s all been said. All has been forgiven. And all is whole.


4. Presence. Living here now. The ability to live fully present to the moment without regret about yesterday or worry about tomorrow. I literally have no control over anything. My days are planned for me, and ALS shows up each morning and does whatever the fuck it wants to do, never asking my permission. So, my only job each day is to just show up. To be present. To be here now. This also happens to be the secret to a full and peace filled life. Showing up for the beauty and the tragedy in real time. Presence.


5. Friendship. I have had the profound privilege of developing a deeper friendship with and love for my sweet friend Emmily, who has become a loving and trusted companion on this journey. We have been friends for 18 years, as our kids, and Tad and Emmily's kids are the same age and we've been raising kids together. Now, Emmily and I share a very special space together as she stretches me three times a week creating a sacred space of quiet, meditation, conversation. A space for laughter and tears, for hugs and soulful healing. We spend hours in sacred silence. The only place where souls can truly know and be known by the other.


6. Witness. I now share a richer and deeper connection to my dear friend, Crispin. We have been friends since last century. During covid/ALS we have shared more time together than ever before and we know each other more deeply. The good, the bad, and the shitshow. When I think about Crispin, I am reminded of David Whyte's poem ‘Friendship’, in which he writes, “…the ultimate touchstone [of friendship] is witness, the privilege of having been seen by someone and the equal privilege of being granted the sight of the essence of another, to have walked with them and to have believed in them, and sometimes just to have accompanied them for however brief a span, on a journey impossible to accomplish alone.”


7. Pace. The freedom to not work. I never minded hard work or working hard. But I never loved it either. I have always preferred sitting and enjoying slowness. I have always loved being with my family and sitting with my friends. Now I am free to, with no guilt or sense of hurry. I am free to live slow.


8. Reconciliation. A firsthand look at what true forgiveness looks and feels like. Many years ago, I wrecked one of my closest friendships. The reasons were many, but through years of reflection, I came to realize that the primary reason I betrayed these friendships was due to my own immaturity and insecurities. A few years ago, I apologized. They forgave me. When I got sick, they were some of the first to offer help and now they come over a few times a week to do projects around our house. To experience this type of love and forgiveness and reconciliation is other-worldly.


9. Beginnings. I understand that without ALS I would not have met these people. They are solely in my universe because of this horrid disease. What a juxtaposition. What am I to do with that? I love these new friends and I want them in my life. My life is better with them in it. My life is richer with them in it. I am a better person because they are in my life. I'm looking at you Emilyand Blair, among others.


10. Time. Time is a gift to all. How we choose to spend it is our decision. My life has been given an expiration date and now I have been told my time is shorter than I thought it might be. Though I never knew, nor do I know now, how much time I have left, it seems that now time is more precious. I have been given the gift of a slow and thoughtful life. I have nothing but time to reflect on and be engaged only in things I want, and with people whom I want to be engaged. No more time for pettiness or bullshit in thoughts or in relationships.


11. Freedom. Freedom to contemplate life, and existential questions from a place of reality and not just theoretical musings. I have sifted through decades of input. I have thrown it all against the wall. I have put it all in the fire. I have held onto the gems and left behind all that was found wanting. I have given myself permission to let go of dogmatic and binary ways of seeing the world. Though I had little of this left prior to my diagnosis, I now have next to none. I don't believe as I once did, and I walk lighter and freer than I ever have. Well, I don’t actually walk any longer, but you get it.


12. Speaking Life. In the years leading up to ALS I practiced this, but now I'm good at it. If you mean something to me, I will not miss an opportunity to tell you. If you don't know what you mean to me, it won't be because I didn't try to tell you. And if I tell you I love you until it makes you uncomfortable then I have succeeded. Because love is all I have left to give.


13. Rebirth. I have never felt more alive than I have since my diagnosis. It's hard to explain and is perhaps unattainable without a death sentence. Although, in many ways I felt as though my life was on this trajectory prior to diagnosis. So, perhaps one does not need a death sentence. Just an awakening. I don't know. What I do know is that every day is a gift, and the world is full of magic and wonder for those who have eyes to see. And I now have new eyes to see life, in all its wholeness and beauty. In many ways, I feel as though I was reborn on April 14, 2020 and was awakened to a whole new wonderful world I had only experienced for brief moments in time, (a U2 concert, a cigar and a bourbon with a friend after devastating news, holding my daughter for the first time, sitting in a church service and hearing ‘ No Hard Feelings’ by The Avett Brothers for the first time, making love to my wife, experiencing Les Misérables on Broadway). These moments were sacred, perhaps one could say they were holy moments and I experienced them at times. But now. Now, I reside here. All the moments have always been sacred, and I occasionally caught a glimpse of it. But now, I see it. Everywhere. It is all sacred. Which is why I cry when my son shows me his latest artwork, or another son hits a double in his baseball game, or my daughter brushes her teeth without having to be told to. Every conversation. Every sip of coffee. Every breath. Every hug. Every word. Every stroll in the park. Every tear. It. Is. All. Sacred. So, Bono, I have found what I was looking for.


14. Empathy. In 19 years of serving as a pastor, I was afforded the privilege of sitting with hundreds of people who were grieving. Sitting with men in hospital rooms while their partner of 35 years lay dying in the bed. Burying stillborn babies and sitting with those heartbroken parents. A young man overdoses. A young woman cuts herself. A 12-year-old dies of cancer. A wife dies in a car accident. A husband cheats. And I was called to be there to be a hand to hold. What an honor. I wasn't good at it at first, but I learned over the years to listen well and be present. But now. Now it's different. Sometimes friends say to me, I don't want to burden you with my stuff, with all you have going on. Are you kidding? I devoted my whole life to this and now I finally get it. I'm not just sitting in your pain with you. I'm sitting in my pain also, with you. We're in this together. Life is a beautiful clusterfuck and love is here. The love is when we walk it together.


15. Sojourners. A sojourner is one who does not walk behind or ahead but is one who chooses to walk beside. Sojourners know when to speak and more importantly, they know when and how to embrace the sacred silence. I am just a normal dude fumbling my way through this life, just like everyone else, and I don’t know how it happened or why it happened to me, but I am rich when it comes to sojourners who walk this path with me. My companions range from those I see daily, some weekly, some monthly. And some, I never see, due to a lack of energy - thanks ALS. But I get their Facebook and Instagram comments, their meals (and they do smell great), their letters, their thoughts. And there are a few sojourners, come hell or high water, who walk this path with me, even though it is difficult and heart wrenching for them to see their friend this way, but they keep showing up, despite the pain it causes their own hearts. I would encourage all to treat everyone in their lives as though their days are numbered. It is such a wonderful feeling to not only be loved, but to also feel loved. Life is hard. Sojourners make it a little more bearable. I am a grateful man.


16. Sacred Silence. When I was in school studying to become a soul care director, one of our main mantras was 'let silence do the heavy lifting'. The idea being that it is often in the silence between sojourners, where we come face to face with our deepest self, our soul, and where we see - really see - and know each other. Most people are afraid of silence for this very reason. We like to fill the air with words and feel acutely awkward when the conversation goes silent. Now, if someone wants to have a real and beautiful conversation with me, they will be invited into the sacred silence as, I take one or two or even ten minutes to type my response with my eyes, as I too am invited into the sacred silence, as I can no longer fill the space, by the very nature that I have lost my voice. This is a gift for all engaged.


17. Love. I do not use fighting terms to describe my journey with ALS. I’m not fighting for my life nor am I in a battle. I don’t want people to say when I die ‘he fought hard’. I want them to say, ‘he loved well.’ Love is the name of the game. To love is to live. I only have so much energy and I desire to spend it all on learning to love well. So, I engage life with ALS and intend to learn all it desires to teach me. The Avett Brothers once said, “the best beggars are choosers, the best winners are losers, the best lovers ain’t never been loved. And first place ain’t easy, the hardest part is believing, the very last word, is love.” I choose to live like the very last word is love. And I will invest the rest of my life pursuing it. Love.


ALS is scary as fuck. It is devastating. It is debilitating. It is destructive. It is cruel. It is a murderer. It is a motherfucker. And yet, it is the hand I have been dealt. So, what is one to do when their life chooses a different path than they had planned? What is one to do when their feet no longer recognize the ground beneath them? Perhaps one could begin to explore the reality of life. For life is not a game of either/or, but in its very essence, it is both/and. Life is both beautiful and brutal. Calm and chaos. Triumph and tragedy. Fantastic and fucked up. Delight and devastation. It is generous and greedy. Happy and horrific. It is mountain top vistas and perilous valleys. It is beautiful. And it is a clusterfuck. In real life, you don’t get one without the other. And you don’t get to choose. Life chooses for you. So, show up. For all of it. Feel it. Hate it. Embrace it. Curse it. Love it. Be here for it and if you allow it, it will transform you into something beautiful that you never saw coming. For just like the Phoenix, beauty will rise from the ashes.


If one were to offer to take ALS away from me in exchange for all that I have experienced since diagnosis, I would have to respectfully decline. I don’t want my life cut short, however, worse than that would be to live a long life without these gifts. So, I’ll play this hand.

Life is a beautiful clusterfuck and love is here.

-b

Love.

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