Nuturing Hope Through the Art of Nature (A Calendar for a Cure)

My son, Cory, and I with copies of  A Calendar for a Cure

I didn't deal well with my son's diagnosis of Duchenne, at first -- I took a selfish, cowardly, escapist approach, numbing my mind with sex, drugs, alcohol, cigarettes and other self-destructive addictions. I let my son's disease feed my disease; it didn't do a lot of good for me or him. Cory needs and deserves a father who is brave, strong, clear-minded and helpful, someone to show him that retreating is not the best approach to adversity. (See Reoccurring Storms.)

But some respite is necessary to rejuvenate the brain and prevent despair from killing hope. I have come to find that respite studying the wilds through the lens of my camera. It's a more healthy form of addiction.

It started with Cory slowing down. As his legs began giving out our backpack trips (no longer possible) grew shorter but longer as he boldly, stubbornly and persistently trudged on. Every rock and tree in the trails became obstacles he embraced as challenges. Even with scraped-up, bloody shins from frequent falls he would often say, "Come on Dad, we can make it!"

We took a lot of breaks. I would often sit down ahead of him and wait. I started paying more attention to the little things around me. The details. The infinite shapes and colors of rocks; the unique and diverse forms of leaves; the constantly-changing structure of water; the ever-dancing shadows of clouds, and how all these things and more interact and compliment each other on micro and macro scales of dynamic canvas. The art of nature!

So I have tried to capture what I see in rectangular grids of pixels.

Last week I was lying on thin ice on a river close to home, focused in on various shapes and colors of frozen wild water. I have no idea how much time passed before I was snapped out my stupor by a concerned older gentleman yelling at me from shore.

"Are you okay?"
"Yes!" I sat up and waved.
"What the hell are you doing?"
"Taking photos."
"Well . . . get the hell off that damn ice before you fall through and drown."

I assured him I was fine, and watched him walk away shaking his head. I imagined him mumbling, "Damn fool." I smiled. He reminded me of my Dad.

Reality slowly settled back in. It was getting dark. I was cold. It was time to go home. I felt great. I felt happy. I felt hopeful. Cory notices the differences in my behavior and attitude. It's good for us both.

Every day I head for mountains, woods, marshes, fields, rivers or lakes and walk, and think, and see art, and try to capture it. And every day I come home feeling a bit better prepared to be a better dad to a wonderful son who has Duchenne.

In no small way, these images derive from the disease of Duchenne.

And so this year I put together a calendar, a Calendar for a Cure, my favorite photos from each month of the year -- images that derive from Cory as much as they do from me.

Purchasing these calendars will further boost the hope these images help nurture. For every $25. donated you will receive an autographed copy of the 2015 Calendar for a Cure. All proceeds go to Parent Project Muscular Dystrophy, a national nonprofit leading the fight to end Duchenne.

For more information and donate, please click here:

Purchase a Calendar for a Cure:

Thank you for helping to keep hope alive!

Reoccurring Storms

I sometimes let myself have a day or so of depression, away from Cory of course, and face the storm in my head and try to at least calm it. Then I think how happy he is, how much he loves me and needs me, and how much I need and love him. I am so damned proud of him. He's an amazing young man.

It's not fair.

There was a time I retreated from it a bit; I disappeared into some bad, self-destructive escapes. That really was not fair to Cory.  Fortunately it was an unfairness I could do something about. I bounced back and I give it my best.

Tonight the storm returned; the raging head torment of "What could have been?"

This week a very close friend and former Marine comrade came to visit. We moved to Montana together out of the service and spent much of our time wandering remote, wild places year-round, for many years, taking long treks that were rigorously tough for us even back then in our late 20s fresh out of Force Recon. He has a son a few years older than Cory. They are as close as I think friends can be considering that he lives in Alabama. He is really sweet to Cory and Cory really looks up to him. Cory asks him a lot of questions about soccer and the South and southern food and whether or not he had a girlfriend or has danced with any girls. We spent a nice day on a wild river where Cory watched him swim to the other side, climb a cliff and jump off with his dad and me. I could tell Cory wished he could do it. I wish he could.

It's not fair.

My friend and his son headed out backpacking for a week. Cory used to go with me. He loved it. Until our trips grew more difficult for him, when he started falling a lot and cutting up his legs.  He never complained. He kept trudging. Once, we had to post-hole through deep snow to get over a pass and down to a lake of wild fish on the other side. Cory could not do it. His legs gave out rapidly. I said we should go back. He said no. I carried him through on my shoulders, when he was nearly too heavy to carry, which made the post-holing deeper and more difficult. I fell once and his face hit the snow so hard his lip was bleeding. I said we should turn back. He said no. I carried him the rest of the way, to where we dropped back down out of the snow. He caught and ate a lot of wild fish. We had a great time.

Last summer it became too much. We didn't make it far. It was the first time I ever carried a toilet seat with collapsible legs. But he needed it; he can't squat anymore. It reminds me of the last time he skied, before we knew but first started thinking something was wrong because his legs gave out quickly and he wanted to stop. He is losing interest. He's at the maybe phase with it. We might go again. Maybe. But I doubt it. At the age of 15 Cory has likely experienced his last backback trip.

It's not fair.

He says he'd rather camp near the car where's there's outhouses. I've always avoided such places, the places I call mild wild and defiled wild. The abstract wild. But I sure enjoy it with Cory . . . even while also sometimes wishing we were way back at no-name lake where the land has no trails -- except for those made by wild elk, moose and mountain goats.     

I thought about going with them, my friend and his son -- they were headed into country Jim and I used to roam back in the day. Way back. No trails. Thick north slopes of alder and menzesia brush. Tough bushwacking. Lakes with no names (and I mean it, really -- except for the names I give them, like "Dead Baby Goat Lake" and "Mad Moose Lake"-- but yes, I would call them no name even if they did.) Great fishing. No people. No judgement. It is what it is. It's wild. It's beautiful. It’s the real world. It’s life. Even in death.

I want Cory to know that; to experience what I've experienced.

It's not fair.

We got off to a great start. I started lugging him around the mountains before he could even walk -- the first time he couldn't walk, that is, at the age when most kids can't – with me carrying him on my back along with tent, sleeping bags, food, fishing rod and a stuffed animal or two. He got his own backpack as soon as he could walk, back when he walked and ran like most kids do. He has seen wild grizzlies and mountain goats, and wild elk and wolves, and wild black bear and moose. He has swam naked in wild rivers and lakes. He has put up with misquotoes and horse flies and rain and snow, cold and heat, and lightening and moons and stars. He has heard and felt the wild chilling music of wolves and loons. He has eaten wild elk and grouse, and wild trout and huckleberries. He can set up a tent and gather firewood, build a fire and catch and cook wild trout. He can tell the difference between a Doug fir and a "P" pine, and a black bear track and a grizzly track. He knows how to dismantle camp so nobody could ever know we were there, the only trace remaining in photos and our shared memories.

I watched Cory watch his friend pack for the adventure. I could tell it hurt. It hurt me.

But then we did other stuff, stuff he wanted to do. We floated and swam in wild rivers. I pushed him as far back as I could into the Rattlesnake in his wheelchair. We hung out at Barnes and Noble and talked about books and ideas. He is happy. I am happy when I am with him.

I try not to think too much into the future  . . . when the legs fully go, then the arms, then the heart and lung muscles. I try not to think about it.  

It's not fair.

Sometimes I finally, suddenly and unexpectedly write; It pours out with the tears.   

It’s 4:52 am. In three hours I need to get him up, cook him breakfast, make his lunch and get him ready for his first day at Improv Theater Camp. He loves theater. I'll probably go photograph wild things wild at camp. Later, we might go jump in a wild river. We'll both be happy.

Until late tomorrow night and into the wee hours of the morning.

It is what it is. It's wild. It's beautiful. It’s the real world. It’s life. Even in death.

It's not fair.