Prologue…

Writing has always been therapy for me and, as such, much of what i write ends up being a paragraph or two in a folder on my laptop titled “Unfinished Projects”.  I spent much of this morning going through those files and actually found some things worth finishing up and posting.  While they are off, chronologically, I still think there is some value in the lessons learned and have decided to wrap a few up and post them here.   Such is the case with Hell’s Bells.  I hope you see what I see…

February, 2014

“Well Hell’s Bells” my dad used to say when he wanted to cuss but didn’t want to say anything too terrible I guess.  I hadn’t thought of that expression in 30 years or more – not until this week when I was diagnosed with Bell’s palsy.  Seems that’s just the right description for it.

After three months of crazy bad headaches every day, including medication adjustments and a trip to the ER for one that was migraine level, I was finally recuperating nicely from the sinus surgery that would put an end to that particular struggle.  I was healing well 10 days post-surgery and was back at work when I noticed my mouth didn’t quite feel right.  A quick look in the mirror told me something was wrong.

Three hours later I was in the surgeon’s office.  By then my right eye would no longer close or blink, I could see that my eyebrows weren’t even and there was a very noticeable droop on the right side of my face, even to my uneducated eye.

I’m not one to panic – denial is more to my liking. When the doctor explained why what were we seeing wasn’t stroke I was a little surprised.  Honestly the thought never occurred to me even though my husband is a stroke survivor.  Dr. Pershall explained that Bell’s palsy, like shingles, is generally considered to be caused by a virus and can be exacerbated by stress – including the stress of a surgery.

In addition to a strong course of steroids and antivirals, he advised me to keep my right eye covered to protect it since it couldn’t protect itself by blinking or producing tears.  Carol, his wonderfully kind, funny nurse of 10 years admonished Paul to behave himself and not do anything to cause me any added stress.

We left the office still pretty calm, knowing this was a temporary situation and determined to deal with it one step at a time.  Easy enough stand to take when you don’t know what those steps are going to look like.

Turns out “keeping your eye covered” meant buying a pharmaceutical grade pirate patch.  Since my eye wouldn’t actually close, it had to either be taped shut or the eyelid pushed down with a tissue underneath the concave pirate patch.  Tape was irritating and would mean my eyelashes would get pulled out.  Tissue was risky – if the tissue moved within that opening, it could easily scratch the eye.   I finally settled on a paper tape and no vanity (really, if you’re wearing a pirate patch are missing eyelashes going to be an issue?).  Also found a couple of very small microfiber clothes at work (iPad cleaners) that I could position above the eyelid over the tape to help push it shut and make the patch itself more comfortable.

Eating was a challenge.  My taste buds were pretty much gone. I could feel hot & cold and texture but not really taste anything.  Texture without taste is like eating rubber or rocks or sand.  I finally settled on milk shakes – the cold feels good and, though I can’t taste the sweet I can get a hint of vanilla on the front left side of my tongue.  Have added protein powder to these to add food value.  It’s a little nasty but you can live on it.

Driving?  Not happening.  I know I’m not safe.  I marvel at how my dad managed so well, having only one eye for most of his life.  Oddly enough, he was an excellent driver.  For me, the loss of depth perception is a deal breaker.  Paul is very graciously taking me where I need to go.  One more reason to hope my experience with Bells is on the shorter end of the 1-6 months spectrum.

I fell this morning.  Paul was warming up the car, preparing to take me to work.  I turned out the lamp, walked back towards the door in the darkness and knocked over an end table, landing pretty much on my face.  As I laid there in those first couple of moments assessing legs, arms, dignity to see what had taken the biggest hit, I thought about how dependent I had become.  I thought about how upset Paul would be that I had fallen in the few minutes he wasn’t by my side.

I gathered myself together, stood back up and went to the car.  “What took you so long to get out here – did you forget something?” and then, shaking his head with a look of consternation, “I should have come back in.  I knew something was wrong.  Are you sure you’re okay?”  As we rode quietly into town hand in hand, I thought about how good it is to be loved and cared for so completely.

A coworker palsied from birth sent me a note the day I was diagnosed. He said to look for the unexpected positives in each day.  It wouldn’t have occurred to me – that there could even be any or that I should look for them.  John’s words of wisdom resulted in Bells Blessings – a daily journal, not of my struggles but of the ways God is showing His presence in my life every day.   Another friend, Jan, quoted a song that says that when you don’t know what to say, just say Jesus.  That’s been particularly helpful as I struggle with my speech, trying to carefully form the words.  I’ve noticed that the less I talk, the clearer my speech is…seems like there are more lessons to learn in that.

While this is difficult and frustrating, we are learning so much.  The switch from Paul as patient/me as caregiver to Paul as caregiver/me as the patient happened overnight.  I am humbled by the need and yet so proud of my husband for way he immediately stepped up and tucked me under his arm, encouraging me every minute and serving me so unselfishly.  He says he learned how to do that from me but I’m not so sure.  I see Jesus in him.

I understand now what it was like to be Paul all those years ago.  Helpless in many ways, a little foggy thinking, demanding.  Occasionally I see him battle within himself (and win!) with the decision of patiently coming to my rescue or just wanting to finish what he’s doing.  I’ve done that so many times with him over the years.  Now that I know what it’s like to be the patient, I wish I had been a more compassionate caregiver.

Bell’s Palsy won’t last forever but I hope the lessons I’ve learned hang around for a while.

Sept 2015 postscript…6 weeks after onset, my speech, sense of taste and ability to blink and close my eye returned.  I look back and realize that I did not miss one single full day of work during this time (just the afternoon of onset), which is more than a little crazy since I talk and work on a computer for a living.  I apologized to my clients for the speech impediment, made the font bigger on my screen and slogged on as usual.  My mantra both for my kids about school attendance and myself at work has always been that we do our jobs unless we are throwing up or on fire.  In hindsight there may need to be some additional exceptions added…

Though I still notice a bit of a droop in my mouth when I get really tired, Bell’s Palsy is largely just a memory now.  This experience DID make me a better caregiver and a better wife to Paul.   There’s nothing like walking in someone else’s shoes – even for a little while – to balance your perspective.