Overexposed

This is me.  Baring my soul.  It's easier to do when I'm sitting at Starbucks and you're wherever you are, and I don't need to look at you.

For a while now I have been thinking about writing this.  Many of my friends have heard me share bits and pieces, and they take it with varying degrees of acceptance, humor, and belief.  I love them anyway.  Because it's weird.  Like face blindness and other random mental disorders diseases conditions, a lot of people don't think I'm telling the truth or think it's just an excuse or something everyone lives with. 

Here's my reality: It hurts to cut my toenails.  I can't wear nylons.  When headlights shine in my eyes when I'm driving at night, I want to hit something.  I don't like the taste of the candy coating on brown M&Ms.  When my kids are poking me and people are whispering and the overhead light is flickering and someone behind me is tapping his foot and my necklace is laying wrong on my neck, I feel like someone is inside me clawing to get out.  I have a sensory processing disorder.

Most of my life was spent in the dark about it.  I thought I was just sensitive.  My parents thought I was just being dramatic.  People saw me and thought I was fine, but I knew that I wanted to run and hide.  Or hit someone.  Or throw up.  Or just sit down and cry.

Several years ago, my husband bought a book for me.  It is called Too Loud, Too Bright, Too Fast, Too Tight.  He bought it for me because he loves me and because he thought it sounded exactly like me.  I read it.  And I cried.  For the first time, I discovered that it was real, that I was real.  That I could trust what I was feeling.  And I learned that while I couldn't cure it, I could cope with it.  And I could tell people about it.

I've spent the last several years doing that.  Telling people.  Often it's in an apologetic way: "I'm sorry, but I can't eat that--it's too spicy for me."  Sometimes it's in a defensive way: "Well, it's spicy to me."  Other times it's in a pleading way: "Please.  I'm overwhelmed right now.  I need a break."  For the most part, people are kind, and usually they want to learn more about it or say that maybe that's the same thing their nephew has.  Some people even want to know how they can help.  But there are others (of course there are) who say, "Yeah--those things bother me too.  I just shut them out."  or "Well, if you try hard enough you can get over it." or even "Right.  You just always need things to be your way." 

Listen, that's hurtful.  I didn't choose to be this way, and I promise you that I would change it if I could.  I wish I could eat spicy things or onions.  It would make me feel like less of a problem.  I wish I could sit in a hot tub.  I wouldn't miss out on the fun or wreck other people's plans for the evening.  I wish I could "tune out" the nylons or the necklace or the pretty sweater.  I would be able to wear the latest fashions then.  I wish I could be around my kids when they're "just being kids" and not feel overwhelmed.  I would feel like a better mother.

At the same time, there are things about it that I would never give up.  Did you know that Asiago Cheese Bread from D&W has so much flavor that it doesn't need butter or anything else?  Do you know that the red M&Ms are actually a bit sweeter than any of the other colors?  Do you recognize the smell of snow on the air days before it falls?  Can you smell spring when the first thaw begins?  Are you able to picture exactly where you set something down or the song that was playing the last time you were in this spot?  Can you (almost always) notice when someone gets a haircut or new glasses? 

When people ask me what it's like to have a sensory processing disorder, I never know what to say.  I never know how to compare my response to a "normal" response, because I've never had a normal response.  Everyone has days when they're overwhelmed, and Disney World puts everyone over the edge at some point in their stay.  All I've ever known to say is that it's real, I have it, and I need a break. 

Then I read The Lifeboat by Charlotte Rogan.  Without knowing it, she gave me the words to explain--to myself and to the people around me--exactly what a sensory processing disorder does.  On page 64, Grace Winter is recalling the Empress Alexandra and the passengers she met aboard.  She writes about memory and refers to a scientific explanation for why memory is faulty.  Then she suggests that "sometimes . . . the failure to remember is not so much a pathological tendency as a natural consequence of necessity, for at any one moment there are hundreds of things that could take a person's attention, but room for the senses to notice and process only one or two."

Ah.  There you have it.  That is normal.  The senses notice and process only one or two of the things happening around them.  But, in my "abnormal" brain, my disordered sensory processing system notices all of the hundreds and tries to process all of them at once.  Then I have to shut down or explode or melt down. 

It's real.  And lately I've been overstimulated 99% of the time.  Today I'm wearing my lightest necklace, and I still feel a bit panicky.  My skin itches and my shoes feel like they're cutting off my circulation.  Something burned in the kitchen at Starbucks and the coffee has been sitting in the carafe for too long.  The guy next to me is wearing a cologne that doesn't suit me, and there's a drip in the sink.  It would be helpful if they turned the music down and if the girls at the table over there stopped their chatting.  The bathroom door needs to be oiled, and I wish the only open seat when I arrived didn't have windows on both sides of it.  Oh, and to top it all off, the people waiting in line are kissing.  Loudly.  I'll manage--one of the open tabs on my browser will give instructions for a friend and me to make a weighted blanket to help me center again, and I found really great perfume that seems to get me back to zero--but it's a daily battle. 

I nearly called this post "Living in This 'Too Loud Too Bright Too Fast Too Tight' World," but in the end I chose something even more appropriate.  Overexposed--that's how my nerve endings and my brain feel every day.  And that's especially how I feel now that I've shared all of this.  I'm telling you it's hard to be a mom with a sensory processing disorder.  It's hard when I recognize it in my middle daughter and when our responses clash.  But I'm learning to cope.  And I'm learning to share it with others just like I would tell them if I couldn't hear well and needed them to speak up.  There's no cure for what I have, but if you'll be patient with me and if you'll believe me when I share my heart and if you'll ask me before you hug me, then maybe we'll both discover that there are so many wonderful things that my disordered brain can offer.

Book Eighteen

The Lifeboat
Charlotte Rogan

The premise of The Lifeboat reminds me of one of those moral dilemmas that often come out when people are around a campfire or in a car together for too long: imagine you're in a lifeboat with a priest, a doctor, a mother, and it will sink unless you get rid of one person.  Whom do you choose?

While the book ends up differently than that, it does present the same underlying question: are you a murderer if you survive at the cost of other lives?  Set in the summer of 1914, The Lifeboat is, in part, the diary of Grace Winter as she recalls the days following the sinking of the ocean liner upon which she and her brand new husband were passengers.  Grace finds herself in a lifeboat along with 38 other passengers.  It quickly becomes clear that the boat, while "built for 40" was in fact not meant to hold more than 30 or so people.  As she writes from a prison cell where she awaits her trial and verdict for murdering one of the passengers, she recounts the storms, power struggles, lives, and deaths of the others aboard the small vessel. 

Interspersed with these chapters, the reader learns about Grace's husband and their elopement to London and a bit about Grace's life before that.  Beyond that background knowledge about Grace, Charlotte Rogan does not give the reader any insight--beyond gossip shared by the other passengers--into the lives of the others hoping for rescue and fighting for survival.  Thus, the reader is left to pass judgement and draw conclusions about the motives and justifications of the others.  I closed The Lifeboat on its final page without answering many of the questions about those very judgements and conclusions, which, I suppose, is where Grace was left as well.

At its heart, this is a story about survival.  It's about Grace's survival on the lifeboat, but it's also about our very own survival.  What would you do if your boat is over capacity and dangerously close to sinking and you see a child in the water, close enough to reach and pull into your boat?  What would you do if you know the boat will sink unless someone gets off and the "captain" asks for volunteers?  What would you do if the most powerful person on the boat--the very person who would help you survive--told you to throw someone who endangered that survival overboard?  How far would you go to survive?  And, once you had, could you live with what you had done?

For When Your Hope is Gone

A while back, I read a series of books called The Chaos Walking. 

It wasn't a series that I loved, but I did find some good "nuggets" in it.  One of those I have wanted to share in its a blog post all by itself.  Then life happened.  While I've spent the past couple of months trying to catch up with my life (how is it November already?!), I have also spent the past couple of months being too busy to be a friend to some of the important people in my life.  This post is for them, with my apology for neglecting to share this sooner or enough.  But it's also a reminder that while I may not have asked or hugged or listened as much as I wish I had, I never stopped believing.

There is a key to friendship and to being a true friend.  It is, quite often, the only key that I can offer to my friends.  For those of you who are Bible readers--or who have spent much time with me when we're sharing our stories--please think back to the story of the quadriplegic man who was carried on a mat by his four friends.  Remember that they climbed up a ladder to the roof of a house that was crowded with people following Jesus.  The friends carried their paralyzed buddy to the roof, broke through the roof, and lowered their friend to Jesus' feet.  They loved their friend, so they bore the burden of taking him to the feet of the only One who could remove his burden.  Nothing could stop them, because they loved their friend.  All the friend had to do was lie there.

Now that can be difficult, and much can be said about that important role, but for today I need to focus on the friends.  That's the role I'm privileged to be in for now, especially with two dear friends.  So, for them, I am sorry that I haven't carried fast enough or far enough.  But I want you to know that when your hope is gone, I will carry you.  When your hope is gone, I will bear your burden and carry you to the feet of the One who can ease your burden.  Who can hold you close.  Who longs to embrace you.  And I will count it a blessing.

Two messages for you, for when your hope is gone:

But there's one other thing I remember,
and remembering, I keep a grip on hope:
God's loyal love couldn't have run out,
his merciful love couldn't have dried up.
They're created new every morning.
How great your faithfulness!
I'm sticking with God (I say it over and over).
He's all I've got left.

...The "worst" is never the worst.
Why? Because the Master won't ever
walk out and fail to return.
If he works severely, he also works tenderly.
His stockpiles of loyal love are immense.
(Lamentations 3:22-24 and 31-33, The Message)

AND

“Hope,” he says, squeezing my arm on the word.  “It’s hope.  I am looking into yer eyes right now and I am telling you that there’s hope for you, hope for you both.”  He looks up at Viola and back at me.  “There’s hope waiting for you at the end of the road.”

“You don’t know that,” Viola says and my Noise, as much as I don’t want it to, agrees with her.

“No,” Ben says, “But I believe it.  I believe it for you.  And that’s why it’s hope.”

“Ben—“

“Even if you don’t believe it,” he says, “believe that I do.”

(The Knife of Never Letting Go, p376, Patrick Ness)

God's stockpiles of loyal love are immense.  Believe it, dear friends.  And even if you don't believe it, believe that I do.