Notes From My Knapsack 2-28-18

Notes From My Knapsack 2-28-18

Jeff Gill

 

A little less conversation

___

 

As is too well known now, I can't talk.

 

Actually, by the time you read this, I should be able to speak a bit more audibly, but who knows?

 

I've been diagnosed with what NPR listeners call "Diane Rehm disease," or what is actually called spasmodic dysphonia. It's a neurological disability that literally grabs you by the throat, and is just as much fun as that sounds. The treatment is being stabbed in the throat with needles, ditto.

 

For the last couple years, it's been creeping up on me, and even when you didn't hear me suddenly getting into a strangled tone of voice or sounding as if I had a touch of laryngitis that came and went, when I sounded fine, I was feeling a steel glove grabbing my larynx any time I tried to speak. Ironically, shouting or singing loudly without impairment is actually one of the indicators of the ailment; speaking in a softer tone of voice was what was hard.

 

The good news is that the injections worked from almost the outset on the voice box spasms. The bad news is that the early phase of "working" means my vocal cords are largely paralyzed. Later on, my voice should return to a more normal tone, and without the spasms plaguing me.

 

The better news is that this is good for me. It all happened very fast, and without the time to plan I would have liked, putting me in some awkward public situations recently, work-wise. The more complicated news is that, if this is to be an ongoing therapy for me, I will have three or four intervals a year of two week "vocal pauses" (and three or four sessions of having injections through my neck cartilage with a scope down my nose, but hey, everything has a price).

 

What I've tried to do is use this first experience with the injections and the recovery phase as a chance to listen better. I can't talk, I cannot anticipate managing a rejoinder anyhow, so if I'm listening I am listening with a mind not to what I will say next. This is not a bad thing.

 

As Elvis said, sometimes "a little less conversation" is a good thing. A little more action, a bit more emphasis on "so what shall we do" next rather than having something more to say.

 

My future work for the county and as a preacher and storyteller will have to become something different, as well. The days of gathering in people by volume and intensity of the spoken word are going to be constrained by the availability of electronic amplification. I'm going to have to work more with small groups, and less often with big crowds wandering the earthworks or on the public square. And even in smaller settings, I can't talk over ambient noise the way I've been used to.

 

So a little more intentionality and planning, a little less public speaking in general, and a lot more listening. It's really not a bad thing at all.

 

Jeff Gill is a writer, storyteller, and pastor in Licking County; he's still got a few things left to say. Tell him what you've heard at knapsack77@gmail.com, or follow @Knapsack on Twitter.

Faith Works 2-24-18

Faith Works 2-24-18

Jeff Gill

 

I am broken. Which is good.

___

 

I am broken.

 

Let me explain, not that this is exactly news.

 

For many years, I've been the guy with the big voice. For Scout events out at camp, inside a big room, or in church, I didn't need a microphone. If there was something going on at a venue, and everyone was still talking to each other, the group leader would not infrequently say "hey, Jeff, can you get their attention?"

 

Could I? Yep.

 

But no more.

For the last five years I've been plagued by recurrent sinus infections, to the point where they got very unpleasant. Yes, I'll spare you details. But many different antibiotics, additional treatment methods (I think I could withstand waterboarding longer than most of you, now), and further therapies all had to be deployed.

 

As we got closer, as it turns out, to a fairly long-lasting solution to the sinus problem, about two to three years ago I started having significant trouble simply speaking. In fact, I could sing if it was loudly, or bellow like a bull moose, but to talk took focus, concentration, effort, and even then I often would find my voice checking and choking and strangling into incoherence. Let's just say that for a preacher this is a problem. I got better at working around the issue, but felt it hurting more and more, a steel glove covered with spikes wrapped around my throat whenever I tried to speak in a normal tone.

 

A bit over a year ago, I went to the next level of medical assessment, and got a tentative diagnosis of "spasmodic dysphonia." It's poorly understood, in part (as everyone points out) because no one has ever died of spasmodic dysphonia, so research is limited. But it's a spasming of the vocal cords when you try to talk, and in fact being able to sing clearly while not being able to speak softly is one of the key indicators for the diagnosis. There is a treatment that eases the symptoms if not curing the disability, and I asked if we could wait to knock down the infection before trying the treatment.

 

Well, shortly before Christmas, the infection seemed finally at bay, and the spasms were if anything worse. So I went in to get botulinum toxin injected into my vocal cords.

 

From the front. Through the throat. Yeah, it was about as much fun as you'd imagine.

 

Now the toxins are working their way through, to give me ease (and it is!) but it takes a while to get back to the balance of vocal cord use with a paralysis of the spasms. Which means, basically, I can't talk.

 

Well, I can, but it's a Mickey Mouse sort of stage whisper. I can't be heard on the phone, can't get someone's attention at the end of a table, let alone across the room. My voice is broken, and will only come back so far. The pain and discomfort is gone, but a big part of who I am is also gone.

 

Which is what it means to be broken. I'm learning things, about myself, about how others handle this as their lasting reality, and where I have to adjust to being someone different. I tried to play a part in worship last Sunday, in church and in a nursing home, and what I was used to doing, I could not. What I could do, was broken and imperfect on its face. I was a broken participant in those services.

 

Only God, in a religious understanding, is entire, whole, and perfect. God is perfect wholeness, "shalom" in Hebrew, the source of healing and the reality of perfection in God's own being. We . . . are not perfect. Or as Christians put it, "all have sinned and fallen short of the glory of God." We are broken.

 

But in this Lenten season, we follow the story of one who accepted being broken, in becoming human, to communicate to all of humankind the perfection of God's glory, in the sacrifice of Christ on the cross. Who God is, is beyond our imperfect comprehension; but in Jesus' brokenness, we see the insistent urge to wholeness and healing that God desires for us all. In him is peace, breaking down the dividing wall of hostility between the wholeness of heaven and the brokenness of this world.

 

Monday, I helped with a committal service. My broken voice was sufficient to bless the ashes and the plot, and it was enough. Out of brokenness can come wholeness, and peace.

 

Jeff Gill is a writer, storyteller, and pastor in Licking County; he's got a vocal disability, but it doesn't give him a blue placard for his car. Tell him about your experiences with brokenness at knapsack77@gmail.com, or follow @Knapsack on Twitter.