Pressing Reset…

Over the past ten days or so, I wrote three stories to get the word out about Brenna, and frankly, I’m astounded at how many people have read and followed along.  It’s pretty cool to look at the WordPress stats and see the reach;  we know the stories are being read by people in Canada, the UK, France, New Zealand, Ecuador, Brazil, and of course all over the US!  (Thank you, thank you, thank you to those of you who have shared her story via Facebook, Twitter, etc…it is MUCH appreciated!)  We have received a number of responses, all of which have been received gratefully by Brenna and our whole clan.  It will take her some time to get through all of the candy…wait, did y’all give her your leftover Halloween candy?  Of course, if she turns Braden loose on it, the sweets are history.  There will be wrappers, licorice, and tooth decay flying all over the place.  He’s getting in better shape (ahem) now that 6th grade basketball is in full swing, but Coach T-Rod may have to add a sprint or two, what with all the candy consumption.

Today (6 Nov) is Brenna’s first day back in the books.  The plan is to see if she can finish off most of the classes she was enrolled in at WC, while working at home.  (Is she absent every day?  I’m not sure how that works, but she was definitely tardy today.)  Time will tell if that proves successful or a dismal failure.  Just out of the gate, “The reading is too much” has taken an early lead, but “We need to figure this out” is coming up hard on the outside.  Our hope is that she can settle into a comfortable routine of school work, having lots of friends over to visit, and staying active in youth activities at church and as a children’s swim instructor.  By and large, she seems to be doing well, adjusting to the new normal.  We will continue to look for answers and a fix, while embracing Brenna exactly as she is!

In the past, this little blog of mine has covered a wide range of topics, as did my old blog.  As I wrote quite a while back, most of these musings are for my own entertainment, and I consider myself successful if I laugh aloud when reading an old story.  The purpose of this story is to press the reset button.  It’s been nice having several thousand people read the stories, as opposed to my usual audience of myself, my good buddy Kevin and his mother, and occasionally my wife.  However, I’m not going to make every new story about Brenna, for two reasons:  first, she is ready for things to quiet down, and particularly for a break from the umpteen doctor visits;  second, my viewership went from 3,000 for the first story, to 2,000 for the second story, and all the way down to barely 800 for the third story.  Attention is dwindling, so soon it will be back to my cozy little band of regulars anyway.  That being the case, I shall return to writing about things that I find amusing, and that perhaps you might too.  Brenna is certainly story-worthy, but hey, as hard as it might seem to believe, the rest of my people are too!  I could devote a daily piece to writing about the odd proclivities of Braden, heretofore known as Skippy, or sometimes Gilligan, or occasionally Mr. Touchy Hands.  Trust me, he keeps us in stitches.  And by stitches, I mean the kind applied by a surgeon.

So, dear reader, I thank you for your attention, and I welcome any and all comments.  I hope you will consider subscribing to this little blog, as music always sounds better in an orchestra than in a solo…or something like that.

Quod scripsi, scripsi

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I Stand Amazed

As Brenna adjusts to her quiet new world, one word she is becoming more familiar with is “awkward”.  While shopping in Merrillville yesterday, a salesperson asked Brenna about trying something on, and evidently didn’t understand why she was being ignored…that’s a bit awkward, particularly when she found out why.  When people who know Brenna well see her for the first time since going deaf on October 26, there is often a bit of awkwardness…like, what do I say?  How do I act?  Is she OK, like is she damaged or anything?  She doesn’t look unhealthy, but is she fragile?  From the perspective of her father, allow me to offer a suggestion:  treat her like you normally would!  The one caveat is that communication has to be more deliberate, which is something that would behoove everyone regardless of the reasons why.

Last Wednesday Brenna enjoyed exactly what she was hoping for:  a normal, fun night at youth group.  Just a few days into her new quiet world, Brenna has noticed that people often stare at her ears, half-expecting them to have twisted into some grotesque shape, revealing the brokenness therein.  But that didn’t happen that night…instead, they enjoyed game time which she played like normal, sang like normal (she followed along, but did not join in…more on that later), had a lesson like normal, and just enjoyed one another’s company.  She came home and said, particularly of a few kids, “They treated me like normal!”  While Brenna obviously knows–more poignantly than anyone else–that not everything is exactly like it used to be,  she is still the same bubbly 15-year-old girl, with the same likes and dislikes as before.  While much has changed, she needs the opportunity to have the same home base as always.

Allow me, please, to give you an update on how Brenna is doing.  To be honest, right now at this red-hot moment, I’m less concerned with the reasons these things have happened, and far more concerned with her happiness.  Yes, I want to know why she is deaf, and we are very hopeful for a cure and reversal.  For the moment, however, as Brenna goes through this profound overnight metamorphosis, my hope for her is that she can find a solid foothold.

Dear readers, I stand amazed!  As I write this, Brenna has been profoundly deaf for ten days.  In that time, she has come a long way in reading lips.  We are all working to learn ASL (American Sign Language), but we are doing OK at communicating because her ability to read lips is extraordinary.  However, we are not going to rely on that alone, because the level of concentration required for Brenna to do so is exhausting.  It’s like every fiber of her body bores into those tiny moving parts, trying to figure out not only the words, but also the context.  One thing that I find fascinating is that Brenna cannot detect sarcasm…she is working so hard to get the words that the intent behind the words is indiscernible, unless the context of the conversation makes it obvious.  ASL is not just hand movements; body posture, facial expressions, emphatic movement, and so forth are a big part of conveying the meaning behind the signs.  Deaf people are very expressive, because in many ways that communicates far more than the words.  I find that already, that flavors much of what I communicate to everyone, not just to Brenna.

Here’s an incredible thing, a performance that Brenna enjoys doing when people come over to visit.  She can turn on a CD, put her hand on the speaker, and tell you what the music is like.  She cannot hear it, of course, but through the vibration of the speaker, Brenna knows what instrument is playing, if someone is singing or if there are multiple voices, and if the pitch is high or low.  Last night she was able to discern what song Drew turned on by following along with the beat and searching her memory for music she has heard many times.  It was truly extraordinary!  We even convinced her to sing a few lines of the chorus, which she finally did, and let me tell you, she still has that awesome voice!  She has always been a beautiful singer, and one thing we miss is Brenna walking around the house singing all day long.  Because she’s newly profoundly deaf, Brenna’s speech has changed, mostly in cadence and pronunciation.  When the timing feels right, we will have her do some vocal therapy, but we’re not there yet.  She’s aware of this change, and very sensitive about it, so we often encourage her that while her speech is different, it is very precious and she’s easily understood.

Today will be her first time in “big church”, and another chance to spread her wings.  Crowds make her anxious, and one of the most devastating things for deaf people is the likelihood of feeling lonely in a crowded room.  Eating in a restaurant is tough, because the friendly banter we enjoy flows quickly from one person to another, and she cannot follow along reading lips.  Riding in a vehicle is tough–mostly it’s very boring–because most conversation is directed at the side or back of a person’s head, and signing is a challenge when hands are supposed to be at 10 and 2.  Church is similar…lots and lots of people, many conversations about diverse topics, and everyone wants to stop and hug her and say a kind word, so the amount of effort she will expend trying to read lips will be very, very high.  But we are very proud of how far she has come in such a short time, and look forward to how God will continue to use even this in her life!

Brenna & Mandy

The hero of this story is Brenna, a 15-year-old young lady from a tiny town in Indiana, and also, bizarrely, Mandy Harvey, a world-famous singer/songwriter.  If you follow the link on Mandy’s name, it will take you to her performance on America’s Got Talent, wherein she so impressed the unimpressible Simon Cowell that he awarded her with a Golden Buzzer.  I don’t watch AGT, but folks who do tell me that’s a pretty big deal!  While it might seem that has no bearing on the hero of our story, I say Nay Nay.  Mandy Harvey has taken on special significance in Brenna’s new life.

Last Friday I wrote a post about Brenna’s sudden entrance into the world of profound deafness.  (Note to reader…if you have not read that post, I would encourage you to take a moment to do so; it will add significance to this)  In the coming days, I will write more about the journey that brought Brenna to this place; for now, suffice it to say that her deafness came about suddenly.  As Brenna was in the throes of hearing loss over the course of several months, her fear began to ratchet up, as she became more certain that medicine would not discover a cause, which proved to be prescient.  Providentially, Mandy Harvey came on AGT not too long before Brenna’s last bit of hearing ability was lost, but it was soon enough that she heard and loved not just Mandy’s music, but more importantly, her story.  To our great joy, Brenna discovered that Mandy was going on tour, and her first performance was at Ball State University, barely two hours away!  The date of the show was Saturday, October 28th.

Less than a week before the show, as Brenna could tell that her hearing was just about gone, she shared with us that she hoped to get to the 28th with enough hearing left to have that one last auditory memory.  As you know if you read my previous post, she fell just two days short of that, losing her last trace of hearing on the 26th.  Even as we were in the ER that night, Brenna said, “I still want to go to Mandy’s concert.”  We weren’t sure the right way to approach that, but chose to trust her that she could enjoy the night, in spite of coming up barely 48 hours short of her goal to hear the music.  In my 22+ years as a parent, I’ve probably made more bad decisions than good ones, but I’ll forever stand by the decision to go as one of my best.

Brenna had fallen head over heels with Mandy—again, her story as much as her music, as her hearing loss closely paralleled Brenna’s—so we got to the show early, hoping for good seats.  Where we initially sat was pretty good, about 8-10 rows back in the center, but I noticed that there were three rows up front marked “Reserved”.  I wondered if those might possibly be intended for the deaf community, so I decided to inquire.  In the course of asking, I explained just a bit about Brenna’s situation to the incredibly kind lady at BSU in charge of the show, including that we do not know how to sign ASL yet, so the interpreter would be of little benefit.  We were invited to move to the front row, and the show was fantastic!  Mandy is extraordinarily talented, as is her band.  Brenna definitely enjoyed the show, even though the music only played in her mind.

Thanks for hanging with me, dear reader, because this is where the story finally takes on momentum!  As we were leaving the concert hall, the lady I spoke to about the reserved seats approached us and said, “Mandy would like to meet Brenna.”  We had heard that Mandy would be in the lobby after the show, and Brenna was hoping against hope for just a minute with her, to have an opportunity to connect and maybe even get a picture.  Instead, MANDY WANTED TO MEET BRENNA!!!!  So they led us to a small private area just off the lobby, where Mandy was waiting.  Incredibly, she spent about ten minutes visiting with Brenna, we took a few pictures, and the girls exchanged email addresses.  It was just one of those surreal moments that makes you wonder, “Is this a dream?”

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A New Reality

As I write, today is Friday, October 27, 2017.  Yesterday afternoon, at 4:08 pm, my world changed.  There will now be two time periods in my life as a parent, separated by a short, panicked phone call from my wife…the first period of time was when my daughter could hear, and the second period is after she went deaf.

Perhaps, dear reader, you experienced a bit of a letdown when you read that.  “Wait, no one died? She’s ok, just can’t hear?  Wow, that was a bit melodramatic, don’t you think?”

To my shame, I’ve had similar thoughts as we have traveled down this road, filled with visits to doctors who seem impersonal, uncaring, content to order the next test, then move on to the next appointment in the next examination room.  Brenna first began noticing she was missing things that were said in January 2017.  That was when her friends started saying things like, “Hey, are you paying attention?”, then repeating themselves.  She first told us about what she was experiencing in April.  Initially, it was a bit of trouble with her left ear, which got worse, and in time also began affecting her right ear.  We had her tested at school in August, and that test revealed extensive hearing loss in both ears, with the left ear being quite a bit worse.

She has been scared, certain that she was going deaf, and fearful of what that would be like.  How would she cope? How would she continue with school? What could she do for a living?  To our great excitement, she found that Mandy Harvey–the America’s Got Talent star who lost her hearing as a teenager in a short period of time–was performing in concert in just a few weeks, and we got tickets to attend a concert at Ball State University on October 28th.  In tears, Brenna shared with us that she was afraid the concert might be the last thing hearing memory she would have.

At the time, I mostly felt that she was being overly dramatic; perhaps you may have felt the same after reading about the event that separated my parenting days into two eras.  After all, we’ve been going to doctor appointments on an almost weekly basis since the middle of July.  They keep ordering the next test…audiology, Ear-Nose-Throat, audiology again, neurologist, MRI, EKG, CT scan, blood work…and every test result came back with the exact same result:  NORMAL. No indication whatsoever as to why she should not be able to hear.  An ENT in South Bend wrote the words “malingering” and “psychosomatic” on his official report as to likely explanations.  Through all of this, I have assumed that some doctor somewhere will think, consider, figure out something, whether by ordering the right test, talking to the right person, knowing more than the last test-reader, or by just guessing right and getting lucky.  I was confident that one of two things would happen:  first, that someone would figure something out, and she would be cured, or at the very least that the hearing loss would be stopped in its tracks and she would learn to live with reduced, but manageable, hearing.  Second, that might lose her hearing completely, but would adjust to a new reality in time and be just fine.

That second possibility now stands starkly before us, and I write with certainty that Brenna, our smart, funny, musical 15-year-old daughter, will adjust and enjoy an amazing life.  But I feel like a complete donkey for having assumed it would just be ok.  Prior to yesterday afternoon, I had not really contemplated what it would be like to be deaf.  I’ve thought about it, but more from an esoteric viewpoint, and as a Christ-follower, I’ve been quick to say, “Come what may, God is still on the throne, and He will use Brenna even in this.”  Please hear this (ironic that we throw that phrase around, huh?): I believe this to the utmost, and not for one second do I question that my salvation has been bought by the blood of Christ, and that God’s love for me and my complete devotion to Him is forever.  But I have questions, and it’s hard to see that there will ever be answers that I will find satisfying.  That’s what faith is…believing when we cannot see, accepting what we would not prefer.

Brenna could hear yesterday, then she passed out and fell down a few stairs  and was unconscious for maybe thirty seconds. When she came to, she was in full-blown panic because she could not hear anything.  Her fears had come to fruition in an instant, a mere moment in time. I was not there at the time, but my wife called and I came flying up the driveway less than a minute later.  My wife and son are processing the trauma of having seen and heard Brenna wake up to profound silence, and express her terror by screaming and clawing the carpeted floor in her anguish and fear.  At the moment, I’m coping poorly.  I can hear, but I don’t want to listen to music, because Brenna LOVES music, and she cannot hear it now.  Always, when I’m writing or working or out for a walk, I have on a podcast,  audiobook, or movie, but for now I have way too much “survivors guilt”, or whatever, to want to do so.  It’s relatively quiet in my study, but I hear my typing, I hear the freezer motor humming, I hear the tick of the clock on my wall, I hear our foster kids cavorting upstairs.  Brenna cannot hear any of those things.  Conversing is hard, because Brenna is sitting right there with us, and we can see that she longs to know what’s going on and to participate.  We will learn ASL, but for now our ability to communicate is poor.  It’s trial and error, ask her to repeat what she caught, learn another way.  I’m thinking about church on Sunday.  Brenna will not be able to hear the message, hear and participate in the worship music, absorb and process the Sunday School lesson.

Brenna says she still wants to go to the concert, which is tomorrow, barely 48 hours after her tumble down the stairs that resulted in waking to silence.  I don’t know if we will go or not, but I know Brenna was and still is very hopeful to get to meet Mandy Harvey, and share a moment with someone who experiences the same silence.  If we do go, I beg God to allow her to enjoy the experience, to be able in some way to feel that she’s in the music.  For myself, I will be weeping, even if I’m able to hide it in some way, as I live in the knowledge that Brenna fell barely 48 hours short of hearing the music she feared would be her last auditory memory.

We hold out hope that a miracle can happen.  All tests indicate that Brenna’s hearing parts all work, that they are receiving sound waves, and that the problem seems to be in the connection somewhere. We hope and trust that things will, somehow, reconnect and her hearing will be restored, even if only a little bit.  With no need to add drama beyond what is painfully obvious, it’s apparent that we live in a new world.  What breaks my heart is this: that world is really only Brenna’s.  I will have to learn new things, find ways to communicate and help her cope, but I can’t experience what she’s experiencing.  I can visit her world, but I can’t live there.  Yesterday she could hear, today she cannot.

Itchy Feet

“Guess what? I’ve got a fever, and the only prescription is more cowbell!”  So goes the immortal line from Saturday Night Live, perfectly delivered by Christopher Walken.  Like your man Walken, I am definitely down with copious quantities of cowbell, but I don’t think that will get rid of my fever.  My feverish state is caused by itchy feet.  Not the “I need that can of Tinactin NOW” kind of itch, but rather, the feeling that I’ve got moss growing under my feet from travel inactivity.  I’ve been too long in one place, and as Alaskan folk say, “I’m getting bushy.”

My handle is the Sober Nomad, which heretofore I have not explained, nor will I in this particular post.  I will do so shortly, because it carries great significance for me, even if to others it presumably means I’m a recovering addict of some variety.  For the moment, suffice it to say that the “Nomad” portion of my sobriquet stands for two things:  first, “This world is not my home, I’m just a passin’ through.”  My personal conviction, which I’m happy to share but don’t force upon the incurious, is that my time here is short, but my eternity elsewhere is forever.  In 1 Peter 2:11, we are addressed as “strangers and temporary residents” of earth, and of this life.  We each have an eternal essence–our spirit, if you will–wrapped up in flesh and bones that don’t last very long, don’t work very well, and are subject to all manner of difficulty.  Many do not agree with me, but while I fear for them, I am content to let each one carve his own totem.

The second train of thought for the “Sober” part of my title is that I do not much like being in any one place for a long period of time.  My residence is in northern Indiana, USA, which I can’t say is much to my liking.  I am drawn to waters, mountains, and various other wonderfully created geographic features, which are sorely lacking in these parts.  A corn field with a little 15′ swale is considered to be an extreme land feature, much maligned by the person trying to grow corn on it.  If you look for lines of topography around here, you have to zoom out, then zoom out again.  What appears to be a single headlight on the road may be a motorcycle coming near, or it may be an 18-wheeler 10 miles off.  Since it appears likely that I may be stuck here for the rest of my natural life (harrumph), I have a constant compulsion to make my way to parts unknown.  Doing so works for me very much like letting dirty dishwater out of the sink midway through a washing so the dirtiest pans get fresh suds.  There is an accumulation of grease and grime that needs to be shed in order for the yet-to-come work to be effective and efficient.  Travel, relocating my flesh and spirit to interesting places, hits a reset switch in my innards.  It allows me to finish the task refreshed and spumescent.  I come back sudsy, able to tackle more grease with less scrubbing.  (Or something like that…any analogies related to being effervescent break down with me, given that the first part of my nom de plume is “Sober”, for good cause.)

At the moment, I’m greasy.  My suds are gone, overwhelmed by too many phone calls, too many demands on my time, too little time near moving waters.  Alaskans use the term “bushy” to refer to someone who has been off the grid, away from outside human contact, for such a long time that they’ve developed a disconcerting oddity, curable only by a return to civilization, even if only briefly.  For my part, I’m not bushy, I’m anti-bushy, if that’s a thing.  I’ve been around civilization–people, cars, and phone have me hemmed in on all sides–and I must shortly get away to a place of quiet solitude, or I’m liable to snap.  My brand of going postal doesn’t involve weaponry, but rather a glaring melancholy that I sense profoundly, but feel incapable of escaping.  I try and try to be nice, to be good, to be content, and may achieve temporarily that if happy circumstances prevail, but it doesn’t last very long.  It’s time to hit the trail, to search out a winding road that leads to a quiet stream well away from interstates and fast food joints.

I’ve got my eye on three places:

  • Manitoulin Island…I passed through Manitoulin Island on my way up to Espanola and across the TransCanada Highway while on a motorbike ride a few years ago.  It seemed very beautiful, but I only passed through.  As I look into it more, I think a week there would be a good start.
  • Prince Edward Island, Canada…All the way through Maine, then into Canada, then out onto the water.  This would be a long trip, but through quiet areas well off the beaten path.
  • Mackay, Idaho…I’ve never been to the states along our northern border west of the Dakotas, and I’d like to get there.  From what little I’ve seen, Idaho looks like a great place to spend a week fly-fishing, camping, soaking up the quiet.

We’ll see what shakes out, and when it works out to take off, but it better happen soon or the cheese is going to slide clear off my cracker!

Eccentricity Honored

One of my great hopes in life is to age into a charming eccentric.  Not a deviant or a psychotic, mind you, but rather a genuine eccentric.  There are, of course, varying levels of eccentricity.  On the one hand, there are eccentrics who cause others to approach and offer quite willingly help pick their bike back up, dust off their tweed flat cap, and wipe off just that wee spot of blood.  On the other hand, there are eccentrics who cause young mothers to quiet their children and hustle the stroller over to the other side of the street, often jaywalking in their haste.  Based on personal observation, it seems rather more common to become the latter rather than the former, but I remain hopeful nonetheless.

This may prove a struggle, as I feel myself sliding toward reclusivity, rather than eccentricity.  (Aside: is “reclusivity” a word? I can’t find it in any dictionary, but if this was a game of Scrabble I would allow it.)  Even now, at the tender age of 45, I could be aptly described as an eremite.  I’m not standoffish or malevolent, I just prefer to spend the very few uncommitted hours available to me each week doing quiet things with myself, my beloved wife, and our children.  If we can be outside in the process, perhaps even in wild areas, so much the better.  If there happens to be moving water nearby, my joy may be complete.  It would not take too much to push me into a quiet life of utter solitude, if that type of existence still is possible in this world.  But I digress.

A gentlemanly eccentric is one who, after you have helped him climb back aboard his bicycle, causes you to smile and merrily shake your head, wondering if he will make it back home with just the one tumble.  There is an assumption of cheerfulness, a sort of myopic hopefulness, in the bearing of a charming eccentric.  You will often find him stumbling around in the middle of the forest, or picking through day-old bread in the bakery, but invariably there is a sense that his intentions are honorable.  Usually he has lost his glasses, or his keys, or both.  We have no fear of such people.  Oh, we may fear that he might not make it home in one piece, but there is no fear that his motives are anything less than noble.  One has the sense that such an eccentric would be a delightful chap with whom to break bread.  Doubtless, his stories would keep you in stitches, often told at his own expense.

How then, to become such?  Much like trying to fell a tree to the east that has naturally grown towards the west, this will require much planning, and possibly a wedge or two placed in just the right spot.  By nature I tend to be curmudgeonly (westward growth), but I hope to veer into peaceful eccentricity (eastward fall).  Exactly how to achieve that happy end result escapes me, at present, but perhaps with time and careful observation, positive growth will occur.  Already I am quite good at misplacing commonly used items (a complete search of the house and vehicles to find either my phone, wallet, or walking headphones is a weekly occurrence), so it seems I am well on my way to partially meeting the requirements.

Cheers to eccentricity!

 

Dear Brittany Maynard

Dear Brittany Maynard,

I suspect the chances of you reading this little blog are one in a million, but nevertheless, I feel compelled to respond to the video I just watched on Bing.  My heart is breaking for you.  I cannot imagine the emotions you must be processing as you contemplate ending your own life.

In the video, you mentioned that you have received criticism from people suggesting that they know what is best for you, and also from knuckleheads (my word choice, not yours) who say you do not look as sick as you say you are.  My suggestion for you is to ignore their criticism, particularly because it is based on information they cannot possibly know.

I do, however, wish to contribute my voice to the crowd urging you to reconsider ending your life on November 1st, or November 2nd, or on any other given day.  Brittany, you are loved.  You are important.  The world will be a lesser place without you.  I say this to you with great confidence, in spite of the fact that I have never met you, nor have I met anyone else who has ever met you.  Odds are, I never will have the opportunity to visit with you in person.

To be fair, I should add that it’s not as if I was particularly struck in the video by your beauty, or wisdom, or talent set.  I would offer this same counsel to anyone in your position.  My convictions are not limited to you alone, or to people with brain cancer, or to people with any manner of terminal illness.  Life is sacred.  YOUR life is sacred.  ALL life is sacred.  It may be that healing will come in time, even when that is humanly impossible and way too much to hope for.  It may be that healing is not in the offing for you.  In any case, your voice is important.  WE need YOU.

In our world today, we are bombarded from all sides with the notion that ending your own life may be the best option if you are terminally ill, horribly mistreated, or in dire financial distress.  Increasingly, it is becoming common to read stories about people ending their lives over situations that, from an outsider’s perspective, would seem to be minor, quickly passing.

Brittany Maynard–and anyone else within the reach of my pen who is engaged in the same battle–I urge you to consider that you were created for a purpose, and while the journey is very often not of our own choosing, your life is precious.  That value comes not from accomplishment, nor from fame or notoriety, nor even from what good you may contribute to the world.  Your value is inestimable because you were created in the image of God, who knew you and loved you before you were even born.

Please, Brittany and Dan, hang in there!