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getting better slowly

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.

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