30A Photography Education & Healthy Living » 30A editorial photographer inspiring women to savor life through learning about photography and healthy living. Serving 30A & Panama City Beach, Florida.

It wasn’t the meatball’s fault.   All the round, brown pieces of meat had done was lay there and allowed themselves to be smothered in a meat sauce on some pasta. When I first saw them, I couldn’t help but smile and start humming a familiar children’s song.

On top of spaghetti all covered with cheese,
I lost my poor meatball when somebody sneezed…”

Sense of humor (or immaturity) still intact, I was ready to dig into my meal.  First, I had to read the label to make sure it was gluten-free though, just like I always do.  Unfortunately, this time, the accompanying meal label didn’t reassure me to my comfort level. No biggie. I could either ask for something else or dig into the pile of my own food I had stocked in the mini-fridge next to me.  Either way, I wasn’t at risk of starving.

The way those meatballs just sat there so relaxed on the pasta though… They not only smelled good, but they looked good.  I wanted to dig right in, but instead I found myself staring at them as a wave of emotions rushed over me. Within a minute, those poor meatballs had subconsciously become the metaphorical representation of myself and my struggles with my immune system –  and they ended up being what tipped me over the edge.

I felt anger towards those little spheres of meat.   Real, visceral anger.  Towards meat.

It wasn’t about the fact the meatballs I’d been delivered for lunch may or may not have gluten in them though… Since I’d been diagnosed with celiac disease a few years ago I’d learned that all it takes is the smallest speck of gluten to trigger an auto-immune response, so I take my food choices seriously.  Gluten is everywhere, and it’s my own responsibility to stand guard and protect myself from any attacks by avoiding any accidental ingestion of offenders. It’s something I can control and I don’t feel any anger or self-pity about having to do so.

This was something more though… This was about the fact that I’d stood guard and hadn’t left the watch but somehow a sneakier, more insidious terrorist had snuck in to wage war against my neural matrix.  The attack was serious and I hadn’t seen it coming.  FPCON Bravo to FPCON Delta.

Looking back, I realize it hadn’t happened that quickly – there had been some warning signs of the impending assault.  Since becoming suddenly paralyzed a month prior and then walking a week later (after some time in the hospital), I’d been living with an uncertain diagnosis with another potential diagnosis that the physicians in the hospital couldn’t rule out.  The one thing that was known is that my illness was caused by my body freaking out after having a spinal procedure – the physicians had decided my body had responded to the benign (and successful!) procedure by mounting an attack, but they weren’t sure exactly what kind.  I was being treated with medicines and physical therapy for what the physicians in the hospital thought might be going on, waiting for things to play out over time.

But I didn’t get better. At all. There were some good days, and certainly the medicines they’d given me had pumped me up and made me extra happy.  But when they wore off, or if I was out of bed too much, I would crash in a big way.  My defenses were weakened and the unwanted antibody invaders were already running around wreaking havoc on my system.  And then one day my body couldn’t take it anymore and I crashed in a big BIG way.

After over a month of exhaustion and pain, hearing the words “definitive diagnosis” and “Guillain-Barré Syndrome (GBS)” was a relief.  I didn’t understand much at the time, but I knew I felt very bad, the doctors were confident that they knew why, and I thought they were going to fix me.  Now that the attacker had a name, we would be able to chase it down and stop him.  I didn’t care if it took nuking him with napalm or luring him into some deadly trap of our own involving a hot shower, warm towel and his own miniature pony. We would figure out what GBS was into, track him down, and convince him it was time to stop his assault on my body.

For eight days, I laid in the hospital and believed that.  The pain wasn’t unmanageable at first, and I still had some occasional movement in my legs. It seemed like only the lower half of my body was affected, so I considered myself lucky.  As the doctors examined me, they quickly drafted their plans to mount a defense.   I would take the infusions that were meant to block the offending antibodies and be back to life and work in no time.  All I had to do was rest a few days and pray that I didn’t become one of the 30% of GBS patients requiring a ventilator to breathe for them. You know, because stuff like that is under our control…

After a few days, the weakness and pain started to grip me again – only in a whole new way.  I tried to avoid narcotics, but then the pain would creep up on me like a nasty little monster and suddenly become unmanageable – particularly at night. The doctors had started me on IV morphine, but my body would metabolize it so quickly that after a few hours I would be curled up in pain and wrapped in ice packs.  One night I found myself crying out step-by-step directions through tears:

“No less than five, crushed ice preferred, double sealed to prevent leaks, wrapped in a pillow case so I don’t end up with frost bite. Sorry for the tears and the raised voice – I’m just going through a thing and will be better soon. I promise I’m not angry at you… I’m just experiencing the “hellfire burning pain” but it will be all better soon. Now, seriously, go get more ice ready.”

The infusions were administered slowly, under watchful eyes.  After a few treatments, I found myself moving my legs more than I had been able to before and I became hopeful that meant I would be easily cured. I assumed that I would be the outlier and that is where my scary, messed up story with GBS would end.

By the time the meatballs were on a plate in front of me, reality had started to sink in…  The infusions had ended and the doctors had transferred me to the spinal cord injury unit of a rehabilitation hospital out of town that was more experienced with treating GBS.  Before the transfer occurred there had been much discussion and concern over the state of my heart, but I convinced them it was “totally fine” and that I was safe to move.  I laughed and said “I’m going to be fine. As long as this pain is ok, I’ll be fine. I’ll go to this fancy new hospital for a week, start walking right away and be home in no time.”  They hesitantly removed the heart monitor, gave me some medicine to help me relax throughout the long ride and then gave me one last shot of morphine before removing the IV.  I was so drugged and disoriented from being in the hospital for over a week that it was easy to ignore what the doctors had said when I asked them for a doctor’s note for work that stated my prognosis.  “Unknown” seems like such a silly thing.  Unknown doesn’t apply to me.

It’s been a week since I was transferred to the rehabilitation hospital and I’ve finally let go of the anger towards those little hunks of meat and all they stood for.  I’m still coming to terms with the fact I’m not a special case and that I have little control over what’s happening inside me, but it’s something I’m working on…

Over the past week I’ve worked harder and apparently asked more questions than any patient ever has.  My healthcare team is experienced with treating GBS and their insight and confidence in dealing with the marathon battle I’m fighting helps me trust them and accept the words they say when they’re contrary to what I want to hear.   Like when I ask if a certain symptom will change or disappear and they say “We just don’t know. This isn’t a sprint, it’s a marathon, and the timeline and pattern are simply unknown. You will get better, but you will get better slowly.”

What I keep trying to explain is that I’m asking a million questions in an attempt to try to understand what’s happening to me so that I’m more comfortable with the unknown…  To me, things are black and white. Linear. Methodical.  Controllable. The more I know about a problem then the easier it will be for me to come up with a strategy to overcome it.  Apparently, the antibody invaders don’t work the same way though. They’re stealthy and unpredictable and work on their own timeline.  Unknown.

Unknown is why it’s taken me a week to write this.  Not just because it’s taken that long to process emotionally (and spiritually), but because I’ve been running a marathon in what feels like a fight for my life.   My body is exhausted beyond belief and my mind has hardly had a chance to rest and reflect.

Yesterday I watched the sun rise outside my window and finally released all the tears I’d been holding in, accepting that much of what’s happening is out of my control.  What’s happening right now is between my body, those antibodies, and God.  All that I can do is focus on healing, resting, praying and working towards small, attainable goals while the angry invaders finish their reign of terror and the nerves decide it’s time to start re-activating.

I’m unable to walk, but I’m learning to use a wheelchair like a champ…  I’m unable to smile normally, but I can still laugh…  I struggle with writing and feeling my hands, but I can type most of the time…  I have some trouble with swallowing and breath support, but I’m enjoying savoring what I eat… My blood pressure will skyrocket and my heart will race, causing a horribly uncomfortable feeling similar to what I imagine a heart attack is like, but my medical staff responds calmly and precisely, coaxing the rhythm back under control.  Every day we discover some new way the attackers have left their mark, and my team ups their game to counter it.  One step forward, two steps back.

While the physicians are doing their part to personalize my treatment with an arsenal of medicines to keep my body functioning, a team of therapists are pushing me to keep moving while my nervous system recovers from the assault.  Together, they are holding my hands and guiding me through the unknown.  Each day they remind me that it may not be predictable or easy to understand, but I will eventually get better.

Today, I’m choosing to let go of anger.  Anger towards my body.  Anger towards myself for not having been able to stop the offending antibodies from invading in the first place.  Instead, I’m choosing to trust the experts as we navigate the unknown and listen to them when they tell me I’m pushing too hard.

This is a part of my story that I never expected to write.  I don’t know when I will be better and at this point, I’m not sure how I should define what “better” even is… All I know is that this is going to be a long, arduous journey that will continue to test my faith as well as emotional and physical strength.  Certain goals will be met sooner, but others may take months or years to achieve – and I’m going to have to be ok with that.  In the meantime, I will bedazzle my wheelchair with an airbrushed license plate and stop apologizing for not having answers…  For having to sign out of the world for a little bit as my doctors stabilize me medically…

Each day I see signs of hope and healing.  Each day I push harder towards recovery.  Each day I give thanks for how far I’ve come and pray for strength, peace and patience as I continue to fight and recover from a syndrome with the appropriate acronym of GBS…  I’m getting better, but I’m Getting Better Slowly.

– Holly

p.s. – You all have had such fun with the t-shirts for medical research and advocacy that we decided to extend the campaign and re-direct it specifically to raise money for GBS research. Same shirts, different non-profit – this time we’ll be directly raising money for Guillain-Barre research by benefitting The GBS/CIDP Foundation International.  They earned a perfect 100 score from Charity Navigator and you can read more about their mission here.

To order your t-shirt, click here.

It really has been nice to meet up like this more lately… I have to admit that it can be a bit awkward at times though – more like a first date.  I’ll stay up at night and think about how it might go and what I might say… Get cleaned up and put on my cutest dress… And then I’ll walk into a room and give it everything I’ve got – try to impress you while I share stories of times past and mix it up with some photos of my latest food adventures.  Because every not-quite-millennial has to admit to taking photos of their food, right?

(Side note: What exactly do we plan on doing with all those food photos on our phone once we post them on Instagram???)

But back to the date analogy… I’m admittedly a bit out of practice, but that’s what it’s felt like as I’ve written here more lately – like I’m dating again after a long hiatus.  Only, before, I knew exactly what I was looking for.  I had all the criteria for what my “ideal type” was and if they didn’t meet every check box then it would just never work.  You know the list we all (not-so-secretly) have had, ladies… Mine was “Six feet tall, dark hair, patient beyond belief, great with kids, superior fish identification skills, must love magnets and be named Chris.”  Obviously.

Now, I’m a little bit older and have learned that the best relationships in life are built upon a foundation of honesty and trust.  And laughter. Lots of laughter.  The characteristics of the perfect friend or mate aren’t going to be bounded by a simple checklist – they’re going to be exposed as you learn to relax, hang on tight to your values, share about what really fires you up and admit that “Hey, I totally don’t have my act together.  Not even in the slightest. But life sure is a lot more fun when we put our masks down and open ourselves to new adventures. Let’s adventure together!”

If this were a date, I would go home and tell my girlfriends how incredibly impressed I am by you.  By the fact you’ve listened to me ramble on about the things on my heart and decided to join the journey.  You decided to step out of the awkward silence and meet me.  You pulled me aside as you noticed me from across the parking lot and said “Hey, thank you for sharing your story. I know we’re both in a huge hurry to race off to our next commitment, but let me tell you something that I have on my heart.”  And guess what?  Your words ended up comforting me in the most unlikely moment. Funny how that works.

We don’t have to decide right now if this is a forever thing… No need to get so serious so fast. But I’d like if we could continue to get to know one another.  I’ll allow myself to be vulnerable and make lots of awkward jokes if you can respect me and my heart.  And don’t worry, we can also talk about light things too – because we really should work together to figure out what to do with all those food photos.

– Holly

Dear Mr. Governor,

I do believe I am quite overdue at writing you this thank you note.  As it turns out, I’m not the best at remembering such things.  I was fairly certain I’d written you one (at least in my head) but it wasn’t until your latest correspondence with the pretty gold seal and finely inked hand-written signature landed on my kitchen counter that I questioned whether the note I’d penned had actually made it your way.  If it’s any consolation, a few weeks ago I ran across a beautifully embroidered hooded newborn towel I’d bought for my friend’s baby – that child is now five.

In the event that you are unable to place a face with the name, I was the one that hobbled onto your stage with the cast on my leg.  You not only gave me an award, but were classy enough to make a last-minute change and also place one around the neck of the fine young man helping me onto the stage. Apparently, you’ve learned a thing or two about success and marriage…  Between the bright lights and massive crowd the details of that initial interaction were a little lost on me, but fortunately there were plenty of people documenting the day and writing articles like this to remind me of the things we both said.

You used words like “innovation” and “entrepreneur” and “young” and then looked me in the eyes and thanked me for what I was doing to advocate on behalf of families living with severe food allergies.  I was honored.  Still am.  But, quite honestly, I was worried I would disappoint you.  I was broken (quite literally) and weary and wondered how I could live up to your high expectations if I wasn’t always able to keep my own child safe.  How could I represent all those things you called me when my best efforts weren’t always good enough? What did you (and others) expect to see from me in terms of how I would shape my personal and professional goals and serve as a representative of someone “Thinking Big” for our great state?

 

And so, when all the cameras left I hobbled back to my car and did the only thing I could think to do at the time – I took the shiny medal you gave me and tucked it the center console.  For the past year and a half, it’s sat there to see when I open the compartment, like a secret note just from you to me.

That was before I knew though.  Before I’d taken the time to read about the ups and downs in your life.  How you’d been the skinny, short kid as well, or how you’d served your country and also served a whole lot of donuts. (All things which make me think we would have a lot to talk about.)

I need to tell you what a difference you’ve made by believing in me though.  First and foremost, you’ve raised awareness of food allergies through all the press the award received.  (Bless you for that.)  Secondly, you encouraged me to continue to be an example of someone “Thinking Big” and never back down from looking for ways to improve upon the world instead of simply being okay with how it is.  That one took a while to sink in because a) that’s a lot of expectations to have on your shoulders and b) having such a perspective can make one seem a little… different.  And, dare I say, very misunderstood at times.

But then you did the unthinkable… You followed up with me.  Twice, actually.  Despite the fact it took me some time to start working through my own “spiritual awakening,” you didn’t forget me.  You made a point to say “Hey you! I care about you and haven’t forgotten you.  Keep being different. You’ve got this! Whatever you decide THIS is!” Although perhaps the literal translation varied slightly…

Now, finally, I can look back and be comfortable with what you and others saw in me.  My own attempts at having a safe and happy family have shifted from trying to juggle multiple businesses and being quite so focused on food allergies and more about balancing my life in a way so that life as a food allergy mom is just a part of who I am.   I’m finding people to help guide me and reign in my need to constantly improve on the world and instead focus on savoring the goodness of the way the world as it is today.  People who are bold enough to remind me that solving world hunger isn’t within the scope of something I should tackle quite yet  – but if I choose to do so then I need to be better about letting others in on my thought process and, most importantly, to always be kind.  Along the way there have been little signs that I’m headed in the right direction.  Remember that baby boy of mine we talked about? Yesterday he had an allergic reaction and was able to communicate it in a way that grownups were able to understand.  He’s ok. We’re ok.  Most importantly, he is growing up learning that that he needs to be his own advocate and that living with severe food allergies is just one part of his sweet little life.

As for your faith in me?  Well, I’ve heard you loud and clear.  That medal and all your shiny letters have served to encourage me to trust my instincts and never be afraid of thinking big, even if it makes me a little… different. The fractured foot I had when we met has been restored and so has my faith in knowing that God has his own direction for my life.  I’ve found ways to dedicate my efforts towards a few of our common interests – our families, our country, healthcare and donuts. (Only I’ll take mine gluten-free, please.)   This week marks a month since I ended up temporarily paralyzed from the waist down – don’t worry though, I’m on the mend now.  During the time I spent staring at the ceiling I decided I couldn’t just lay there, so I created an online campaign to raise money for researching rare medical genetic disorders by selling cute t-shirts.    Can you believe my family and friends managed to raise almost $1000?

What I didn’t tell them is that I had the Governor’s words of encouragement in the back of my head, always reminding me to think big and use my unquenchable desire to make the world a better place.  You’ve reminded me that even the tastiest donut once started as a pile of mush and had to be shaped by the loving hands of others that believed it could become something more. For that, I’m grateful.

Respectfully,

Holly

p.s. – If you know of any newborn babies named William then please let me know. I have a beautifully embroidered hooded newborn towel they are welcome to.

***7/25/17 Addendum: The “Write Your Own Story” campaign has been so successful that after my diagnosis with Guillain-Barrre (GBS) we decided to do a “push goal” of raising money for GBS research and advocacy efforts. Same t-shirts, another great cause! Check it out here.***

I never give it enough credit because I never meant to stay.  The first thing I did when I got that piece of paper in my hand was throw my cap up in the air and run away faster than green grass goes through a goose.  But then I grew up…  And life happened… And I found myself coming back to this sleepy beach town to heal by the sea.  My family smothered me in love and I learned to love again.  So I decided to stay a while.

Even after all this time, a not-so-insignificant piece of my heart remained in the city – our nation’s city – and I felt like aspects of the life I’d lived there would never compare.  And those comparisons slowly chipped away at the hole in my heart I’d worked so hard to patch with a plaster of sand and salt.

As I’ve navigated the latest chapter of the book I call my life I’ve found myself saying “I’m so fortunate to have a great healthcare team far away from here who actually knows what they’re doing. The timing always worked out perfectly so I could get out of town.”

But then I came back, my doctors went on vacation and I was left alone with the vague but uplifting instructions to “write your own story.” Because the truth was that nobody knew what would happen after a few weeks.

Enter Donna. We met at her office just next to the surf shop and across the street from the beach.  The summer heat and salt air wafted around as I shoved my walker aside out of embarrassment and tried to make it to the door. Then we talked… She took pages of notes, shook her head and then examined my body gently.

When we met again she seemed to know the exact right things not only to do but to say but to make me shut up and listen.

“I’ve done the research… Turns out there is none. At least none that applies to you. The fact that you’re getting around as well you are is incredible. You’re a living, walking miracle. Nobody has done what you’re doing and you’re blazing trails for people to learn from in the future.  We can do this together, with your doctors, but you need to listen to your body and heart. It’s time to check your ego at the door and stop doing everything 400%. Use your walker and get over it. This is going to take a while.  One day what you’re doing is going to help guide others in their recovery. But now, with this… You have to write your own story.”

My jaw dropped at her loving boldness and then I said “Wait, what did you say??? Did I use that phrase before? Do you normally say that?”

“No… But that’s what you’re doing. Writing your own story.”

Teary eyed.  Those four words again.   Write.  Your.  Own.  Story.

Suddenly, her words sunk in and I said “Ok… Let’s do it. But first, I need to fulfill a promise to someone else that didn’t know me but was bold enough to show up and speak truth to me when I needed it.  They showed up at my door to give me words of wisdom and gifts to encourage me, but when they asked for a picture I denied them because I was simply too embarrassed about still being bruised and puffy. But today I’ve got their t-shirt on and I want a photo with you. May I just set my walker aside for a moment? I’ll lean against the wall and promise not to fall.

She gave me a joking eye-roll, but finally allowed it.

In that moment, I realized that God knew what He was doing all along when he led my heart back to this little town…  The love and grace I’ve been given here can’t hold a flame to any shiny monument.  And those quietly confident people I’ve met? They’re exactly the type of characters needed to help me walk through this chapter of life.

– Holly

 

p.s. – There’s only one day left to buy a cute t-shirt (click here!) and help raise money for researching rare medical genetic disorders.  (We’ve raised almost $1000 so far!)  Spread the love while spreading the message that we’re all capable of writing our own stories.

It wasn’t very far – ten to fifteen feet at the most.  I could probably get there, but instead I froze.

A few hours earlier I’d walked unassisted to the kitchen to grab a banana and found myself reflexively stopping to clean up the counter.  The simple act of wiping up kid crud made me feel normal again.   But then the swelling returned and with it the tingling…  Then the weakness…  I tried to call for help, but the vibrating cushion let me know that the receiving phone was wedged into the couch and nobody would respond.  I was alone and unable to reach for the sturdy walker I’d grown to loathe.

A month ago I never would have imagined I’d find myself stuck on the couch, staring across the room at an assistive device. My vision blurred and hands trembled from the aggressive doses of medicines coursing through my body to control the inflammation compressing my spinal cord.  As I moved my legs over the side of the couch, I stared at the floor and fought back tears.

“Is this what my life is going to be like? When will this end? How much longer will I have to take these medicines that make my heart race and face swell?  Will I ever surf again?  How am I going to manage transitioning to work when I can’t sit up for more than a few minutes? What if I become too weak to walk and people see? Will they judge me? Will it scar my children to see their mother like this?”

As I looked down I realized I could feel my toes on the smooth floor and knew I wasn’t paralyzed – I was only paralyzed with fear.  I transitioned my weight to my feet and felt my knees buckle underneath me and decided that it would be safest for me to wait for someone to return.  I was going to be okay. In that moment I was just weak – not only physically, but mentally and spiritually.

Reclining back onto the couch I recalled snapshots from adventures I’d had.  Fearlessly climbing up rock faces… Trekking through the Alaskan wilderness…  The feel of my fingers gripping the smooth concrete platform as I slowly pressed my body into a handstand and threw myself off the edge, forcefully flipping into the water five meters below with grace and precision.  That’s who I was.

Surrounded by pillows and ice packs, I closed my eyes and prayed for strength.  Moments later, the familiar pitter-patter of little feet came through the door and I realized I was no longer alone.  “I’m so sorry… I’m so embarrassed to ask… But please help me – I’m too weak.”  My husband brought me the walker and helped me make my way to the bathroom.  Edging down the hall, I found every step easier than the other.   I was able to summon the strength – I simply needed guidance, reassurance, and someone to catch me if I should fall.

Settling into my favorite nook in the kitchen, I allowed myself a moment to escape from reality and check out what was happening in the world of social media.  The first thing that popped up was an image with this quote underneath:

Reading the words, I couldn’t help but feel like I’d been slapped in the face by a truth bomb.  Point taken, God.   These words of encouragement had come from the Instagram feed of a stranger leading a company focused on improving health and  fitness.  Before this latest trial I’d planned on participating in one of Vitality Pro’s fitness camps, but had since started to question when or if that would ever happen.  Meditating upon those words stopped the steroid-fueled roller coaster in my mind and brought me back to myself.

Life won’t always be happy go lucky.  There will be trials and tribulations.  God promises it.

Every day I get healthier and have longer periods of mobility…  Yesterday was a really good day and tomorrow I will finally begin physical therapy. As for today?  I woke up steadier on my feet than I’ve been in weeks and decided I’m going to kill it (at least for a few carefully-planned hours).

I have no idea how long it will take for me to fully recover (and wean off all the medicines), but I know that I will overcome.  Pretty soon I’ll be leaping on ledges and following through with the plans I’d made – perhaps just with a bit more of age-appropriate caution.  My hope is that the lessons I’m learning will stick with me for life and that when I reflect upon this time I will choose to say “Yeah, that was a rough month, but God sure did teach me a lot. I can’t wait to see what He has in store for me next.

–  Holly

p.s. – There’s only eleven days left to buy a cute t-shirt and raise money for rare medical conditions.  Let’s all work together to find the upside of the rough spots in life and support the Ehlers-Danlos Society while we’re at it.  While theillness I’m recovering from is not a direct complication from an underlying connective tissue disorder that I have (Ehlers-Danlos Syndrome), freaky inflammatory and allergic responses seem to be more common in the 1 in 5000 that are affected.  There’s still just too many unknowns and research to be done and the Ehlers-Danlos Society is a non-profit guided by medical experts committed to finding answers.  Get your shirt to support their mission and spread the positivity while you can! (Select the image below or click here for more info)