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How I Cope With Emotional Pain as a Result of My Son's Illness

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Describing your pain  — from how intense it is, to where it is, to what it feels like — can be really difficult. How would you explain your pain so someone unfamiliar with it can begin to understand it?

I remember the pain clearly. It came in waves.

I was working on a project on the other side of the city when my wife called me and told me our son had been diagnosed with Duchenne Muscular Dystrophy (DMD).

The first wave happened after I had finished consoling my wife on the phone, sitting in my car outside of the project site I had to go back into, and the job I had to complete that day. I looked up DMD on my phone and silent tears streamed down my face, making it even harder to read the grim prognosis. I took a deep breath and went back to work.

The second wave came crashing down later that night, after we had put the kids to bed. My wife and I lay on the bed holding each other and wept. I don’t know for how long; long enough for my wife to fall asleep, I think. These days, nearly four years ago are a bit of a blur.

I remember those waves of pain crashing, one after another. Like some sort of horrific swell that would curl into an immense force an bear down relentlessly upon me. I felt like a surfer who had lost his board. Scrambling to avoid the power that tossed me about like plastic debris.

The third wave came later, in the shower. I remember this as the worst wave. Like some beast of a tsunami that dropped me to the tiles. I opened my mouth soundlessly. This felt like my heart being exposed to the salt water as I was dragged over coral. Like a wound tearing open flesh. A literal pain, not metaphorical. It was deep. It frightened me.

The next week I was never free from the onslaught. Not really. I carried on with work, eventually too exhausted to even leave my desk to weep in private. I simply worked through as the waves came upon me, leaking tears down my cheeks as I responded to emails and prepared work for clients.

Do the waves go away?

I don’t know. I don’t think so. It’s been four years since diagnosis, and they are still coming. Less frequent, less powerful. I’ve become better at seeing them on the horizon, predicting them. I anticipate them. I prepare for them. I think I’ve learn’t how to ride them. Sometimes I fall off and it’s a scramble to get back on.

Perhaps I can share some things that help me ride the waves of pain when they come:

1. Enjoy your pain.

“Yeah right,” I hear you say. Give me a second to explain. There are a lot of things we do for fun that hurt. We run, we work out, we get intense shiatsu massages… these things hurt, but in a good way. I’ve learned that my pain can be used like that. I’ve learned to let myself feel the pain. Really, really dance with it. Allow that wave to wash over me and give it everything it’s got. I weep, I get angry, I let it consume me. I curse heaven and God. I vent. For a time. Believe it or not, I find it cathartic. This helps.

Maybe enjoying pain, is a hard idea to get your head around, but I would be lying if I said that some part of me didn’t enjoy surrendering to the pain for a moment. Dare I say, that as I am immersed by the waves of pain I am also somehow refreshed. More aware I am alive.

2. Share your pain.

Like surfing, the waves of pain don’t have to been ridden alone. My experience is that the best things in life are done with others. So are the worst. I am grateful for the community I have in my life.

Men who I can share a beer with. Guys I catch up with for coffee. We pray together, talk together and encourage each other. The burden is lighter when it is shared with others. This didn’t come easy at first. I didn’t want to be a burden to others. I didn’t want to be “that guy.” The “guy with problems” guy. But when I chose not to share my burden, eventually it became too heavy for me. It resulted in me seeking professional help. I met with a psychologist who I still meet with today. Together, we talked through the pain, the heartache, the grief… and found something I wasn’t aware of.

I realized most of my pain wasn’t about my son’s diagnosis. It was about my desire to be loved. My desire to be supported. It took talking to someone else, who asked me some really difficult questions, for me to be able to see that.

3. Let go of your pain.

Waves come and waves go. You can’t surf forever, you need to have a process for catching that last wave in for the day. Riding it out and walking away.

A great piece of advice I received was: “Your pain is like a back pack. You have to carry it around with you, but you are allowed to put it down for a set time. You are allowed to lower your burden.”

Easier said than done!

Actually, I have a few things I do to help me intentionally put that back pack of pain down.

Exercise: Nothing beats going for a bike ride or a run for me. I also love to play squash with a mate. Ideally, exercise that is intense and short for me. I really need to sweat and push myself. Feeling physically spent. Then I just soak in all the serotonin. And sweat.

Creative Mindfullness: I am an artist, so this might not be your thing. Perhaps you would prefer to write something for The Mighty, like I have here. Really, anything can be creative, not just drawing pictures. I love to cook, read, write… all of these things put me in what scientists call a “flow state.” You can even get it just stopping and staring at a lake. It is about becoming so engaged in what you are doing in these moments, that you stop thinking about anything else. Including your pain.

Unwind: Blow of steam. Break something. Disrupt the usual pattern of life. I do it daily with a coffee at my local store. I do it weekly with a fun day out with the whole family. I do it monthly catching up with friends. I do it quarterly by taking a night away with my wife. It doesn’t have to be expensive. It doesn’t have to be long. It just has to be something that makes you feel free.

So does the pain still come?

Yes. It probably always will. As we go down this journey with my son, the prognosis suggest that waves of pain will continue to come.
But for me, every wave of pain is always accompanied by an acute awareness of the moment. I am awoken to the feelings surrounding me. The emotions deep within me.

These waves push me into the now.

I have learned that being very present in the moment is one of the strangest gifts that pain can bring me. Because it’s when I am in the present that I remember the greatest truth of all:

It’s not about me.

At this point, I remember to seek out my son and tickle and wrestle and cuddle him, showering him with love, until he begs me to stop.

Follow this journey at James Alley.

Originally published: April 2, 2018
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