Wednesday, April 26, 2017

Unless...

I'm frustrated.  This is long, but stick with me.  I own up front that this is mostly rant.  

In January of 2009 I got a phone call that has forever changed my life.

"Jen is having some kind of seizure.  They're taking her to the hospital by ambulance.  Get here."

Two months later I choked back tears as we sat in St. Louis Children's Hospital at Washington University.  I was handed a business card, and I looked up and asked the nurse practitioner, "Why are we in the epilepsy center?"  She looked at us and said, "Because your daughter has epilepsy."  Light faded to dark.  I could feel hope disappear.  Flashes of the life we'd hoped for her ran through my head.  The first image that came to my mind was from the third grade, as I watched a girl in the 4th grade laid out on the gym floor at Cuba Elementary, flopping like a fish out of water.  That had been my only exposure to epilepsy.  I will never get that image out of my mind.  I remember her hobbling around school on crutches because she couldn't walk well.  I knew she was in the "special" class.  In 1980 there was a taboo surrounding epilepsy and I was so afraid that there still was.   

Not my daughter.

This can't be real.  I kept hoping for the "Because your daughter has epilepsy, but..." from the nurse practitioner but it never came.  That appointment was followed by God only knows how many more, so many tests, so many disappointing results, and a total lack of answers as to why this was happening.

Then the theologian in me kicked in and I started an eight year theodicy struggle.  In the scriptures, most of the references to demonic possession were actually cases of undiagnosed epilepsy.  Those stories talk about the "demon" throwing kids into fires to try to kill them, or God only knows what else.  How could God let this happen?  Why her?  Why now?  She's so young and this is going to change her world forever.  She'll never drive a car.  She'll never live independently.  What about brain damage?  What about memory loss?  Will she ever be able to have kids?  What's this going to mean for any future career?

Anti-seizure medications by the handful.  Side effects I don't even want to think about.  Mood changes.  Weight gain.  Hair that fell out in clumps.  This stuff was all happening to our baby girl and we were powerless to stop it.

So we started reading.  We read everything we could find on epilepsy.  Medical journals.  Chats.  Forums.  Websites.  Anything that might offer some hope as to a way to control this disease, because there is no cure, we read and re-read, hoping for some connection.  Yet every possible connection, every new hope, everything we tried...we'd wait...then the seizures would come again.

Picture with me for just a minute.  I'm standing in the kitchen cooking breakfast one morning and she walks through the room with that tell tale stare.  I knew what was going to happen, so my first move was to get her on the couch.  That way, when the seizure hit, at least she wouldn't fall and hurt herself.  The next thing I see is my 18 year old daughter standing in front of me crying, with blood running down her face and off  of her elbows.  I cleaned blood out of her carpet for an hour and a half that morning.  Every time I thought I had it out, more blood would come to the top.

Then there was the time she seized and fell into the entertainment center.  I grabbed her by the feet and pulled her out into the middle of the floor so that she would stop beating her head against the shelves on the bookcase.  Or the time she seized in the shower and it was just she and I there.  I pulled her out of the shower so she wouldn't drown, and there was my daughter, on the floor, flopping like a fish out of water...the exact same image I had in my head from 1980...playing in front of me in their bathroom.

Those are just some of the times this demon has disrupted her life.  Her mother could tell countless other horror stories.

I'm saying all of that to say this...we as a society are so quick to jump into someone else's world and offer advice.

Don't.
         Don't.
                 Don't.  It's not helpful.  Don't offer any cliche's.  Don't make a big deal of a seizure, but don't ignore it either.  Don't say "Well, it could be worse."  Absolutely do not say, "You just have to have faith that she is going to be healed."  It's not that simple.  Don't say, "At least it's not..."  This one is less than helpful, "If I were you, I'd..."  Why?  Because you're not me...or her...

See, we know all of those things.  We know it could be worse.  We know that there are folks who struggle with things way worse than epilepsy.  We know what other folks have done and tried to treat this demon of a disease.  We've read just about everything that has been written on every possible treatment.  Don't argue politics about what's legal and what's not.  And for the love of God don't argue theology with me.

What you can do instead, and that might actually be helpful, is encourage.  Remind those who are struggling that they are loved and supported.  Offer to help if you know it's been a rough day. Talk to them about it, not about them to someone else.  Let us be angry and/or frustrated.  Be there.  That's all you need to do.  That's all we ask.  Be an ear...be a calm presence...be a source of hope...

I'm writing this, choking back tears, as we start yet one more treatment today to hopefully find her triggers.  If we can just find the triggers, we can begin to control this damnable disease.  As we do that, please be encouraging.  That's all we have left.

One last thing, unless you've been where we are (and I insert anyone here who is struggling with anything) do not offer me advice. 


Saturday, April 22, 2017

Who Will?

"There's an opportune time to do things, a right time for everything on the earth..." (Ecclesiastes 3:1, The Message)

I believe in seasons.  Where I live, in Western Kentucky, we get to watch them change with a sure sense of consistency.  Winter is followed by spring.  Spring by summer.  Summer by fall.  Fall by winter.  Then the cycle starts all over again.

I'm learning that the same is true in life and in my work.  Good times are followed by bad times.  Bad times are followed by good times.  Lows are followed by highs, and highs by lows.  In my work as a pastor, there are seasons of great growth and spiritual renewal, followed by seasons of doubt and exhaustion.  It happens.  It's the nature of things.  It no longer surprises me.

However, when we find ourselves in one of the down times, and we will find ourselves there if we do this work long enough, we have two options, really.  Either we continue on, waiting for the morning when we feel the winds begin to change, we notice the brightness of the colors outside our office windows again, and we find our purpose being restored...or, we give up and quit.  Folks say that no pastor should ever resign on a Monday, and I get that, but they didn't say anything about a Wednesday or a Friday, and if we're honest, we've all been tempted.

I've realized over the past 18 years of pastoral ministry that there are just going to be times when you want to throw in the towel and do something else.  This is a tough work we are called to.  There are times when the phone rings and it sends chills up your spine, or someone stops you to say, "Do you have a minute" and it makes you grit your teeth.  I know that biting your tongue to keep from saying what you may want to say at times becomes exhausting.  And, there are times when you are just one more meeting away from throwing a backpack in the truck and driving off into the sunset.  BUT...I've also realized that this, too, is just part of it.  

Today something hit me like a brick between the eyes.

This is the Saturday after Easter and Easter, for a pastor, is the busiest time of the year.  I've spent this past week trying to get caught up on the things that had to wait while we were getting ready for Easter.  My body is tired.  My spirit is tired.  My emotions are tired.  Again, it's just part of it and I knew that when I signed up for this gig.

What hit me today was actually something that I say every Sunday without fail.  It's my benediction at the close of our worship service at Grace, and this week it became a reality for me.

There is so much hurt in our world.  There are so many people who feel like no one cares.  There is so much wrong with so many systems.  Our county's demographics paint a picture of struggle on a fairly large scale and, honestly, there are no easy answers.

Because of what I do I find myself in situations that, before I went into the ministry, I'm not sure I even imagined as being real.  Sometimes there is such a sense of need and urgency that it really can be overwhelming.  Years ago, during a very similar season, I asked my mentor, "What do you do when the weight of carrying  your people's burdens gets to heavy?"  In an attempt to draw me out of the valley he said, "You go crazy like the rest of us."

Today, I have found myself climbing out again.

It started with a text.  "Can I call you?"
"Sure"

I won't offer any details but the pain on the other end of the phone was real...more so than other phone calls I get.

After I hung up the phone, these words hit me...

"If we don't go...who will?"

That's my benediction every Sunday as we close worship at Grace.  I always tie it into whatever the message was about and I will say something like, '"they' don't know that there is a loving God just waiting for them." Or "'they' don't know that they are not the sum totals of their past mistakes."  Or "'they' don't know that grace, forgiveness, and a new beginning can be theirs."  Then I will say this, every week...

"How will they know if they're not told?  How will they be told if no one goes?  And if we don't go, who will?"

After I hung up the phone I almost began to weep because the God who called me into this work asked me that very same question as I was walking across my living room.  "Jamie, they're hurting, and if you don't go who will?"

Here's why it hit me...  This really is exhausting work, but I don't mind the exhaustion.  Three times this past week, that I know of, I've lost my patience in three different situations and it showed.  I have seriously had to guard my words.  I have had to just walk away for a few minutes.  I've wanted to quit.  It seemed like nothing matter, and in a very self-serving way I've wanted to ask, "What's the point?"  Today, God began to restore my compassion, and it was very much needed.

Occasionally, even we need that.  We have given our lives to the work of the gospel, the Good News.  We have taken vows to shepherd our flocks.  We study.  We listen.  We pray.  We plan.  What I have found though, is that sometimes, the ones who need us the most get lost in all of the busy-ness that comes with our calling.  Lately, that has happened to me, and for that, I ask forgiveness.

I'm not even going to try to justify it by saying that I'm only human.  I am.  But that's not the point.  I had forgotten why I got into this in the first place...it wasn't to fill up church pews or lead awesome meetings...it was because I could see how folks were hurting and I wanted to do something to help.  I knew that something could only be found in the one who had called me.  

So, my clergy brothers and sisters, I feel your frustrations and your exhuastion.  I know you cringe sometimes when your phone rings, as do I.  I know our work seems to be never ending at times.  But my prayer for myself and all of us is that we remember why we do what we do.  Yes, we have mission statements and catch phrases, but there's also a word full of hurting people just outside our doors.  How will they know they are the beloved of the Almighty if they're not told?  How will they be told if no one goes?  And if we don't go, who will?