The Diagnosis and The Light

I am having a hard time moving around lately. My muscles feel like there are weights holding them down, my legs can’t move as fast as they could before, and my face just feels like I can’t make the same expressions as I once could. Everything feels slower and more difficult. Holding a guitar and making chords with my fingers feels like a reach. Playing piano becomes difficult as if I were a ten-year-old trying to play for the first time. Running is impossible, maybe a light jog, but a full-out run always leads me on my back within 10 steps. I’m struggling physically, and I’m struggling emotionally. It’s been a difficult week.

I was diagnosed with a rare auto-immune disorder called Myasthenia Gravis in the early part of July 2013. My hope was that it was just the struggle of recovering from Mono, but as it turns out, it is much worse. Myasthenia Gravis, or MG, is a disorder that holds back neurons from making the connection to the muscles in the body. I could start with my arms held high, but after a few seconds the ability to even use my arms is basically gone. It’s very humbling. It’s very defeating. It’s terrifying.

As a touring artist, worship leader, songwriter, and all-around busybody I never realized how much I took the simple ability to form vowel shapes properly for granted. Even making an ‘S’ sound with my tongue can be difficult if I haven’t had my medication in the designated time. You can probably imagine the frustration that comes with trying to sing like that. As a person in general, I never realized how much I took being able to simply smile for granted. I mean a big, excited, happy smile. With a good ol’ fashioned laugh that comes with hearing a good story from old friends. Thankfully, my medication will help me to control those muscles and still smile. Mostly.

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If you’ve ever been to an Unscene Patrol show, you probably know how high-energy our show is. You’ve probably seen me jump off a keyboard seat. Or a drumset. Or a speaker. Or in one case I remember jumping off a 10-foot chair rack. As you can imagine, not being sure of my physical ability to perform in that way drives me crazy. I love the rush of adrenaline that comes from flying 10 feet in the air and landing hard on my feet as we hit the last chord and celebrate the end of another sweet, sweet rock show. My understanding is that those moments might become fewer and further between. My hope is that the doctors are all wrong, my body is just going through a funk, and my faith will prove to be strong to the point that maybe, just maybe, God Himself will clear this disorder from my body. I love touring and traveling and jumping off of ridiculous structures. I’m not ashamed to say it.

However, I must also look at this struggle I have within myself and ask “what do I love most?”. Is the desire to play rock ‘n roll greater than my desire to see people see hope, truth, and love? Is the desire to have a stellar band and hundreds of thousands of fans greater than the desire to see a few of them become inspired to do “greater things than these”? Is my personal love of music greater than my trust in the perfect plan that is the story laid out for my life? Where is my energy going to? What is my focus?

Darkness is not forever. A friend of mine says that a lot. I love the truth in it but at the same time find myself always questioning it. The only way for darkness to be completely gone is if the shadows that are cast are burned out by another, brighter, unhindered, unadulterated, indescribable light. A light that surrounds, encompasses, and covers all shadow-casters. Is that something that we can know and see and feel here in this existence? My heart says yes, but my mind says no, and worst of all my body says “I don’t know, Kevin, but I sure see a lot of shadows right now”. That uncertainty, I won’t lie, is not nice and tidy. I can’t clean that up. There is no resolution right now. I’m struggling with this darkness and I don’t know how to accept this shadow-less world that I hope and pray is somewhere over the horizon. Is this how people with cancer feel? Is this how people who go through bankruptcy feel?

But then I ask, are those things the same? Why should a cancer patient and a bankrupt adult both feel this same level of darkness? Those really aren’t equal, yet they both know this darkness. Why do I feel this darkness? Should I feel this darkness?

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Tonight I had the opportunity to play at a camp in rural Nebraska that I truly love. The Unscene Patrol guys and I played for 200 or so people, mostly middle schoolers. In the initial moment of holding a guitar in my hand, I felt the weight on my shoulders. I couldn’t quite press down on the guitar strings as hard as I wanted to. It was pretty dark in that moment.

But then, the voices rang over the darkness. The songs played loudly in the room. The presence of light and hope and trust and peace shone brightly in the darkened parts of my heart. For a brief time, there were not shadows. There was no darkness. There was only joy. There was only peace. There was only light.

Maybe darkness isn’t necessarily ever eliminated from our day-to-day lives, but I must say that that set of songs felt pretty bright to me. Those voices sang pretty loudly to me. Those hearts felt pretty full to me. I know that mine was. And I danced. And jumped. And rejoiced. And sang. And worshipped. And felt victorious in the light. This blinding, radiant, warm, peace-giving light. I’d like to spend more time in that light. I sure plan on it.

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My heart longs to live in the moments of pure light. I think that’s why God allows us to live in some shadows and darkness. Some people question that and say things like “If there’s a God, why can’t he just let eliminate the darkness forever? Why can’t he just win the battle against evil and make everything good?”. That’s a fair question, but what if it’s the wrong perspective? What if that’s not the point? Maybe our story isn’t about how we end, or where our destination is, or what we look at whenever we look back, but maybe it’s about how we stand still. Maybe it’s about how we look all the way around. Maybe we shouldn’t worry about what’s ahead or behind or below or above. Rather, maybe it’s about whats right here. Right in front of us. Right inside of us. Sometimes that’s darkness. Other times, it’s radiating with light. Maybe finding that spark of light and turning it into a strong flame to light the way is the whole purpose itself. Maybe it’s not the direction we go, but the journey that we go on. Together. Bringing our little bit of light together and showing it to others who have no light and giving it to others who need the light and joining it with others who declare the light and saying “HEY! I HAVE LIGHT! I WANT YOU TO HAVE IT, TOO!”

Maybe this whole thing is about light. I know I have some. I would love to show it to you sometime. I would love to share it with you sometime. I would love to pass it along to you sometime.

We Can Be One, my friends

-Kevin

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Kevin McClure is a songwriter, musical artist, and worship leader. His singing & songwriting has led to him touring the United States both as a performer and worship leader. Kevin lives in Omaha, Nebraska with his wife and two daughters. You can follow him on all social media platforms under @KevinTMcClure.