Category Archives: duchenne

“I wish I didn’t have special muscles…”

“I wish I didn’t have special muscles,” Brendan said to me as I struggled to pull both him and his younger brother through the Farmers Market, with those damn wheels that don’t turn. “I can’t run like Owen can. I can’t jump off things or climb things either. I wish I didn’t have special muscles, Dad.” Maybe he has been putting things together for some time now and after seeing Owen for a few weeks at gymnastics club, all the people walking past him while he was in the wagon finally drove it home. He also had the C.A.R.E. Day event last week for kids with special abilities. Whatever the factors, this was the first time he ever said this and it has been with me for days.

IMG_20180519_094428819 Buddy, I wish you didn’t have special muscles, either. I wish this wasn’t the hand you were dealt. You didn’t ask for this and neither did we. I know I said right away that it’s true, you can’t do all those things… but there is so much you can do. Reading, playing board games, your art, your singing. We can do these things together, and it’s true, you are so good at these things… but truthfully, I haven’t figured out how to give you what you need and give Owen what he needs at the same time. I’m trying to figure this all out, too. How can I be the Dad you need?

I think I might have said to you that sometimes we have things that make life more difficult and we just have to work with what we’ve got. Sometimes, we are given really really shitty luck. This won’t be the only difficult thing you have to deal with. I wish I could see it all as a gift. I say I see everything as a gift, but some gifts I want to give back, that’s for sure… and your DMD is definitely one I would return if I could.

IMG_20180522_070904278

I don’t know what goes on in your little (or big…) mind. Your brother, either. This has to be so hard for you guys to navigate and some days, when I have enough compassion, I can recognize your tantrums, screaming, breaking things, and aggression as a cry for help. You don’t have the years of getting through tough stuff to know that there is more to life than this. This IS your life. It’s your whole life, and I’m sure there are many times you just don’t know what to do with it. Well, I’m lucky I get to go through it with you. I’m lucky I get to be the one to hold your hand when you cross the street so you don’t trip and fall in front of traffic. I’m lucky to be able to help you get your pants on or to lift you into and out of the car every time. I am lucky to pull you to school in your wagon, to play board games with you, and to take you fishing even though you get tired after holding the pole for five minutes. Our futures are tied together for the time being and I’m glad for that. God goes with us, the land will hold us up, and whatever life we have and receive together can be full and abundant with joy and love.

Yesterday, when we were late for school, I told you that we were not likely going to beat your buddy, Oscar, to the classroom. “It’s okay, Dad,” you said. “We don’t have to beat Oscar every day. Sometimes it’s okay to go slow.” Wow… I don’t know that you knew all you were saying in that, but it’s true, buddy. You can go slow, and often you will see more when you do. And I’ll be there to go slow with you.

 

IMG_20180520_102552621

 

Advertisements

Light in the Darkness

Sometimes, I am keenly aware that my writing, processing, thinking, and speaking tends towards the dark, the haggard, and the grief-slog of day-in-day-out challenges. Often the things that speak to me the most are those things that put words to the heartbreak. There is purpose in this, a reason that this hopeful onetime-positive Baptist boy from the Midwest now refuses to be pinned down in too much hope and an over-positivity with “what may be.” Western culture is not sane in its stance towards that which is natural and good… terror, trauma, and narcissism has been made into entertainment so that the news becomes Hollywood while adolescence, youth, and denial are celebrated as salvation. Ironically, I was always told we’d get new bodies when we get to heaven, ones that don’t get sick, old, or feel pain. I think if heaven is full of young-bodied youths, I’m not sure I want to be there. Let me enjoy getting old, for God’s sake!

This is why I put words to the trouble, why I try to name the grief in such a way that others feel it in their gut, or their throats close up and they can’t speak. I want to let it hang there for a while and not jump off the hook too early. Someone’s got to do this… and I am so grateful for those who continue to hold us up to the edge of the abyss with a trust that we will not be forsaken, that we may come out the other side. It is also important for me to remember that there are those who have had such bad luck in their lives, who have faced such tragedy that anyone really listening in would wonder if it truly is real. Or else what was in the water they have been drinking?!? Families completely riddled by cancer, trauma, death, tragedy. There are so many in the world feeling worthless and completely cast out of a society glorifying the glitz and glamour of success, money, health, and youthfulness. So many in the world… no, so many in my neighborhood! If I can’t honor the pain they have experienced in their lives and put words to it, how can I possibly get close enough to walk with them in this?

I really am a positive person. I am not lost in depression and unable to see the light. I won’t get pinned down too easily on hope and heaven and miracles… but there is redemption and there is salvation. Watch the birds and the bunnies and know that they are finding food without stockpiles of nuts and grass that are growing compound interest at the best rates. For every winter there is a spring coming, no matter how cold, barren, or buried by snow it has been for the last 3 months… or years. Every time the sun goes down, it comes back up again. Life Force moves through the universe, down into the smallest atom, infusing it all with the buzz of life. Synchronicities and wonders happen to those who pay attention, reminding us that we are not alone and that in some sense, we will be ok. The wild, the world, is not an unfriendly place in its design. As Gerald Manley Hopkins writes, “Christ plays in ten-thousand places, lovely in eyes and in limbs not his.”

There is incredible joy to be found in allowing life to be what it is going to be. This includes death, pain, and grief. This includes praising said life and all that comes our way, praising it all with words and exclamations – sometimes with tears and screams – affirming the life that we see and the life that is given. It is all a gift, after all. We are in debt to life, so let us live like it, speak like it, and love like it.

Can’t go on, must go on

What do I mean when I say this, and what difference does it make for me and for others? “Can’t go on, must go on” is a mantra for the moment to moment mourners, the grief-learners, the ones who journey daily through slivers of light and stretches of shadow. To live in this awareness or to remind myself of this is to learn that there are times in life, sometimes daily where I need to be honest about two things: one, that there is more than enough heartbreak and trouble to go around and it is real and it hurts like hell; and two, that my place is to keep putting one foot in front of the other and walk with wonder and fullness in this heartbreak.

“Can’t go on, must go on” is not a declaration of self-pity. It is not depression, nor is it desperation. It is the look I see in the eyes of people day after day after day who courageously lean into their own sickness or the trouble of those whom they love dearly. These words are words of the lean-in, the hold-to, the push-forward, the hang-on to something… anything.

But most people don’t say the words. I see it but I don’t hear it. And some stop half way. “I can’t go on, and I won’t go on” is expressed often and it truly is a dark day, when someone stops there, especially when it doesn’t have to be true.

“I can go on, and I must go on.” This, too, doesn’t carry any weight, and often in many ways is heartbreaking in itself. No… ultimately you can’t go on. Or you won’t go on. Listen to what they are telling you. As Brendan told me yesterday, “Nothing lives forever, Dad.” Thank you, six-year-old chaplain’s son, thank you.

If we want to learn compassion, learn to have joy, to witness ourselves expanding both up AND down, words like these need to be said among us. Words like these need to be felt deep into our beings. I feel like I am at the end. I feel like I can’t take any more. I’ve got nothing left and I can’t cope with one more stress/tragedy/heartbreak. I can’t go on… and yet… I know this is not the end. There are still things for me to do. The world, my home, my land, my people, they need me. I will call upon whatever strength I might have and whatever strength I am given by the mysterious out-there/in-here. Divine Life will enliven my spirit and/or my body… to take one more breath… until there are are no breaths left and my spirit and my body will enliven others. Even then, we go on. Nothing is lost. Everything comes from somewhere.

Quite literally, Ups and Downs

I entitled this piece for a reason. I’ve been thinking a lot about tempering lately. I think there used to be a time when I felt it was of value to maintain a Zen-like middle path where I didn’t want to get too excited and I didn’t want to get to upset. Thrills and depressed… that’s what Anthony de Mello used to say. But, I don’t want that any more. I am fully convinced that this is not the way to learn love, it is not the way to learn how to grieve. It is not the way to grow in our connection to Life and all of life. We have ups and we have downs and neither is better or worse that the other. Perhaps, I can explain.

I did a talk on Sunday about generosity and and brought the full Orphan Wisdom Forensic Audit Method to the teaching. I studied the etymology, I brought in a poet, and I kinda of winged it. Not saying I wasn’t prepared and not saying it didn’t land. But I experienced the full effect of being on the “receiving end.” Here is the down and up of generosity. It comes from the root “gene” which essentially means “stock, kin, and to have been beget.” When they used to say you were generous, they meant your “line” was good. Well, now, few of us know where we really come from and we live in a time of individualism and to a certain degree, miserliness. This is the opposite of generosity, which is to act in such a way as to take into account what “begot” you or what “made” you. Your land, your food, your ancestors, your people… the thing is to let this affect us. This ain’t no “middle path.” This is the down and dirty, learning to “inhabit vulnerability as generous citizens of loss, robustly and fully” (as David Whyte writes about), letting ourselves feel down into that and rise up out of it. “Everything comes from somewhere,” I have been teaching the boys.

Since getting back from Canada and Orphan Wisdom School, I have had a number of firsts, each an up and down of a certain kind. Part of my work in the world, beyond the spiritual director/chaplain/community builder, is to help create and do ritual at transition times. I did my first baby baptism, outdoors by the lake on a Sunday morning. The geese, paddling on the water at the edge of our steamy-breath hazed sight, took flight as the ceremony was complete. The most ideal and wonderful witnesses, reminders of the wild goose that won’t be caged. I blessed baby Sawyer, as one connected to the trees, with elements of earth, fire, wind and water… a calling her down into the land even as we lifted her up and honored her place in the family of things.

Not even a few days later, I was asked to do a funeral for a young mother, who had two young children, six and two. This would be the first funeral I had ever done, but it was one of those “can’t go on, must go on” kind of events. Difficult and heartbreaking, devastating even… but necessary and something that I knew I could do in honor to her. This was very much a down even, going down into the sorrow, but yet, as I offered to the community gathered there:

I first met Jana and Kevin, the day they got their biopsy results back… all the way back in March. I was also there, when they heard that nothing else could be done. These could very well have been among the very worst days. Yes, there were tears. Yes, there was shock. But these things do not equal a hard heart. A hard heart is when we stop paying attention. When we shut down. I never saw that in Jana. When I asked her three weeks ago if there is anything she was unresolved with, any questions that were left unanswered, her response was, “Why? Why me?” This is the question that keeps a heart from growing hard, at least if we can somehow consider that there is no good answer, no answer sufficient enough to take the pain away. When we jump too swiftly to fairness and unfairness, deserving or not deserving, even what God has to do with it… I think this stops our open heart. An open heart is a broken heart

An open heart is a broken heart. Or perhaps a broken heart is an open heart. However you want to say it, the truth of it remains. We must let ourselves be affected. Don’t shut it out. If you want to live as a receiver and as a giver, you must draw down and be affected.

One final up and down, and this is my life now, as a dad of a boy with Duchenne. Brendan fell last week. In his room. Just toppled. This something that happens with weak muscles and not good balance, nothing new. But he also doesn’t have much in his upper body to cushion his fall so when he hit his bed frame he broke his arm. I got the call and rushed to emergent care where we had x-rays and he got a sling. He was quite silent throughout the whole visit, no doubt taking in our repeated reminders to the doctor and nurses that he has Muscular distrophy and falls a lot. But when he got that sling, he smiled and did a little dance for the doctor… who proceed to say he had never seen anything like this and told all the nurses. Down and right back up again. Light in the midst of our darkness. I am schooled by a six year old.

I had to pick him up and carry him to school a few days later because he can’t walk that whole way. Plus we were late and his wagon had been left at school. A fifty pound boy with one arm and another that is not strong enough to hold on gets heavy quickly so I pushed it as far as I could, telling him that when we get closer he would have to walk. “But I’ll get too tired,” he said. How do I know when he can do or when he can’t do it? Is he playing me or telling me the truth? Well, he walked because otherwise I would be the one down. We went slowly and I watched at how his left foot hit the pavement at an odd angle. Tight calves, I thought. He isn’t planting his heel first. Another problem with DMD. I felt, too, the slowness of his gait as he lagged behind and I tried to hold his hand. It’s ok to slow down. I don’t need to pull him. Innocent parents unknowingly share that we might not get in the back door, but I know we have a special pass and help him get his coat off and carry his notebook for him. It aches to see the signs, to watch the slow progression and to still find these moments of joy, as in the conversation about the frost on the grass. He reminds me… don’t miss this, Dad. I’m going down, I need you to hold me up. Or Dad, I see you are going down. Let me hold you up.

And this comes to my memory just now as I write… just today, a patient with sepsis, confused and difficult to understand, after ten minutes of indiscernible conversation, says with eyes half closed, “Hold me up… I’m going down.” I can’t make this stuff up. I am receiving it all. It’s my kin and it begets me. Be generous to me, Life, and may I respond generously.

“Coping” as a couple

I like this photo, because it was taken in a good moment. I can’t even say, a good day, because our ebbing and flowing these days does not even happen on a daily basis. I am constantly reminded that the photos we take and the posts we make are often made when we are at least good enough to reach out to the outside world. They are only part of the picture though, for me, for Kat, and I would assume for any of us. I can demonstrate some strength, Kat can offer some wisdom and insight… but that’s on the good days… I mean, in the good moments.

On the bad days In the bad moments, it is a nightmare for us. Kat’s need for emotional expression and care clashing with my need to have space, to do, and to NOT talk. There is a chasm there, enough for either of us to wonder (Kat out loud and me inside), is our marriage going to make it?!? More of this later… and note that I wouldn’t go as far as to really believe that there is good/bad in the difficulty of “coping” as a couple, but the shoe fits. What I can say is, it is agonizingly hard. I never thought I would say, “Fuck you!” to anyone, let alone my own wife. And I never imagined that word would be used so often in my marriage relationship. Well, the woman that Life sent my way to love (and to duke it out with) for all my days, or hers, was a glorious surprise and yes, we swear… these days, often. Life did not see fit to give either of us a life of daffodils and moonbeams, and this is our lot. But damn,  we love us some good flowers and a good full moon. We know, though, that we only love the flowers so much because we know that one day, they will not be. And we only love that moon so much because we know that it will wane and grow dark.

41s6e7oy8yl-_sx331_bo1204203200_“Coping” is used so much in the hospital, in therapy, in chaplaincy-talk and I don’t like it. It smacks of “getting by” or something passive that happens as a result of stress that we may or may not be able to make a conscious choice about. I like the term “adaptive strategies” rather than coping skills, as adapting and strategizing are active and intentional. I steal the term from Kenneth Doka and Terry Martin from a book that they wrote entitled Grieving Beyond Gender: Understanding the Ways Men and Women Mourn. I use this resource extensively and it has been so very helpful in my work with grief groups and supporting those in the hospital and in my spiritual direction sessions. Doka and Martin’s way of framing grief styles has given me the awareness that Kat and I, in all of our shitty annoying processes, are not better or worse in how we grieve, we are just different.

Without divulging their entire theory and getting into too many spoilers, Doka and Martin assert that grievers exist on a spectrum between intuitive and instrumental grief. Intuitive grievers are affective in their grief, feeling strong and powerful feelings, and needing to vocalize their grief process. Instrumental grievers are doers, needing time and space to process, think, and make meaning of their grief. They have emotions, but they are much less dynamic and vibrant than those of the intuitive. Men and women fall somewhere on this spectrum, tending more towards some blend of the two poles. It is far from gender-prescriptive, but men tend to fall more on the instrumental and women more towards intuitive.

The very distinct benefit of seeing grievers on a continuum is that there is affirmation for a less emotional style of grieving. For years, therapists, chaplains, and grief “specialists” have said that the only way to process grief is to feel all the feelings. Even in chaplaincy residency, I was expected to verbalize feelings, verbalize feelings, verbalize feelings… maybe much more than is within my capacity. There was benefit to it, but I am a chaplain, not Joe Smith who works his blue collar job and fishes and hunts in his free time. Many people, men AND women, are active and cognitive with their grief, even when they are unconscious that it is their grief that they are working through.

Just last night, to give a perfect example, I got home from my final grief group session in this series and said to Kat, “I can’t talk much right now. I need to sit with this last session and decompress from it.” She said a few minutes later, “You can’t really support me in the way I need to be supported, can you?”… because she wanted to vent and feel. My response was, “Well, I support you in many ways, don’t I? Can I be the support for all your feelings? Probably not. No more than you can get up and go to work for me, when I don’t even want to get out of bed. But I have to do that. I have to get my ass going and do it anyway.” So this morning, as I walked out the door at 6:15, I said to my sleeping wife, “Can you go to work for me today?”

“Sure,” she said as she rolled over and went back to sleep.

And this is how we do. It sucks to not get all your needs met from your spouse. But how many people when I ask how they are handling things as a couple (insert “coping”) say, “Not good. Really not good…” They don’t know why, though, that’s the thing. I just want to say, come to my grief group. It will help. Kat and I, as much as it pains us, know that this is just going to hurt. It sucks. It really fucking sucks. But we do the best we can. In our worst moments, we can’t even talk to each other. In our best moments, we hold each other. And most days somewhere in between, we ask all the unanswerable questions, swear cry and talk, and at least sit next to each other on the couch while we are on our smart phones.