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Staring at the wall, I wondered if the way I perceived the color had something to do with the fact I’d inhaled too many fumes.  Or perhaps it was because it was still wet. The longer I stood there, the more obvious it became that I’d royally messed up…

The 1” x 1” paint chip had been hanging on the wall for weeks and I had looked at it in every light – I wanted the kitchen to be the perfect shade of soothing blue/grey.  I had a vision in my head of what I wanted and decided I’d talked/daydreamed/procrastinated long enough.  I wanted action.  I wanted my kitchen to look like it was straight out of a Pottery Barn catalog and I knew I was capable of doing it myself, so I did the only logical thing I could think of – I ran to the store, bought a few gallons of paint and got to work.  As I rushed through slapping two coats of paint on the wall I was quite pleased with myself.  I was making things happen.  I hadn’t bothered to let the first coat of paint dry completely, so it hadn’t become obvious immediately…  But as I stood there watching the final coat of paint dry I began to come to terms with the fact I’d somehow managed to paint my kitchen a shade of purple resembling a particular dancing dinosaur from a children’s show… The color I’d used should have been named “Barney Purple.”

At the time, the experience wasn’t quite as humorous as I remember it now.  I ended up calling my friend Sarah to come over for a second opinion – she confirmed it was, indeed, Barney purple.  She chose not to make fun of me and instead quietly stared at the walls, then at me and said “Ok, let’s go to the hardware store.”  Driving to the store, I remember feeling incredibly embarrassed. How could I have made such a mistake?  Once we were inside she helped me find the perfect shade and then she and the man in the paint department gave me a little lesson in both home improvement and life.  They explained to me a) how you can’t rush paint drying and b) when undertaking a large project you should always seek guidance from someone that loves you enough to tell you if you’re headed in the wrong direction.  Both seemed obvious points. Both were things I’d completely ignored.

While my eye for color has improved since that unfortunate day, I continue to work on remembering the other lessons I learned.  This week, my tenth since I was hospitalized with Guillain-Barre (GBS), I keep thinking about the kitchen incident and how much it reminded me of where I am with my recovery.  I was told the recovery from GBS would be slow, but in my heart I didn’t believe that applied to me. I was told that there would be huge fluctuations in fatigue and weakness, but I didn’t think that applied to me. I was told that if I overdo it then I would pay for it, but I didn’t think that applied to me.  In the same way that the damaged myelin sheath surrounding my nerves keeps their little messages from being sent properly, it’s like there’s some sort of disconnect between knowing things and truly understanding them in my heart.

Case in point… I have experienced one of the most surprisingly confusing/joyous/frustrating/ecstatic moments of my life since I last wrote.  One day my legs felt strong and my frustration level with my current “situation” was through the roof.  Between the anger/frustration and my perceived strength I knew I could walk. I wanted action. I wanted to walk. That afternoon I was working with a former college football player turned physical therapist/researcher, and I trusted him to catch me if I fell.  My requests to try walking were met with uncertainty but he finally, cautiously, wrapped a gait belt around me and held a death grip on me.  We tested out my legs by standing slowly.  I straightened my body into a position I remembered from my gymnastics days and pretended I was standing on the balance beam with an imaginary string pulling my head up.  He held me up enough so that I wasn’t bearing my full weight, but I found I was able to support much of it without my legs buckling – a huge feat.  “Ok, good job. Let’s try walking.” I inched my right foot forward and placed it on the ground. Then I moved my left foot forward.  Unlike every other day I’d tried it didn’t get stuck and I was able to push it forward.  Then I did it again… And again… Sure enough, I was walking – or something resembling that… It was awkward and zombie-like and I only made it a few steps before collapsing into my wheelchair, but I did it and didn’t care if I looked like a zombie or not.  We were all so shocked that it took me a second to process it and then I said “Ok, now can I get rid of the wheelchair?”  Everyone aside from me broke out in laughter… “No, that will be a while. You still have a way to go. But that was a great start. Don’t dare try that outside of physical therapy. Promise us you won’t. You can get hurt very badly. Do you promise?”  Instantly my mind went to daydreaming mode and I started thinking about how I’d be back to normal in a week – chasing my kids around the yard and doing intense cardio every day.  I replied, “Sure, I promise…” But mentally I had already begun making plans.

A few days later I did it again. This time I had two people hold onto me and I used a walker, but I did it. I walked…. It was less awkward and I made it a few steps further.  I was looking down, watching my feet and my body move forward as I was asked “Can you feel your feet on the ground?”  I slowed down to think  before I stepped again and realized that I couldn’t feel them at all…  Then I made it a few more steps before I fell into my wheelchair, overwhelmed with emotion again. I had walked (with help) but I couldn’t feel my feet.  Once again, I was given the warning: “Do not try this at home – you’re too weak.  You need to work on crawling before you can walk.  The muscles aren’t strong enough and the nerves are still healing.   You did a great job, but if you try to walk on your own you’ll cause further damage – you’re not ready to do this without our help.”

 

The moment I’d dreamed of for several months was not at all like I thought it would be.  I’d envisioned one day everything would come together – I’d be strong, I could feel, and then I would be off and running. But instead there was a day that followed where I was too tired and weak to stand with help and then another day I woke up (after overdoing it the day before) and I was hardly able to feel my hands and legs.  Perhaps all the experts that have told me recovery would be slow and non-linear were right after all… The recovery process is more like the NASDAQ market – there are lots of daily fluctuations, but over time things will improve and I’ll get better and better.  As frustrating as it may be, looking back that’s exactly how things have progressed.  I’ve made huge strides in the past ten weeks and mentally I’m ready to run, yet I keep being told I’m still not there… In order to heal I have to humble myself, trust the experts and get on my hands and knees and practice crawling – just like a toddler.

And in between all the crawling I need to be still and wait for the paint to dry. Wait for the nerves to heal.  Wait for my body to recover.  Waiting is the only thing to do, no matter how badly I want to slap up another coat of paint and get my project completed.  Or, in this case, toss my wheelchair aside and run down the street.  Yet God keeps (emphatically) telling me I don’t have a choice.  As well as my doctor… And my physical therapist… And my family…  The only choice I have is to wait and when the moment is right and I have the right people to guide me, only then can I stand up and slowly put one foot in front of the other.

Lately I’ve found myself in the odd situation of being forced to rest.   Today I wanted to be up running around, but instead I was given the choice of laying down for a few hours and either napping or finding some other way to rest.   I chose to spend my time on the couch editing photos, which brings me my own kind of zen. Digging through my electronic photo catalog I found an assortment of photos I’d taken from my month in the hospital. I’ve had people ask me how things have been and what the rehab hospital was like, but I’ve had a hard time explaining it so I thought I’d get a little visual help.  In short, it was hard… After spending eight days in bed at my local hospital, I was looking forward to a change of scenery.  I felt like I’d either stared at the ceiling or watched the IVIG infusion trickle out if its bottle and into me for days.  At one point I took out my camera phone and took a snapshot of the medicine hanging above me, but then I realized that was the extent of excitement and so I curled back up in a ball and let the morphine work while I prayed the infusions were helping.

Fast forward eight days to my arrival at the rehabilitation hospital. I had no idea what a rehabilitation hospital was before we headed there – all I had heard about was a different kind of rehab that I was pretty certain I didn’t need… When we arrived I was still highly medicated, a bit disoriented and for some reason I was shocked that it didn’t resemble a hotel. “Oh, ok. Wow…  This is a real hospital…”   I had been admitted to the spinal care injury unit, which also dealt with “medically complex cases” like Guillain-Barre Syndrome.  It turned out there were doctors and nurses everywhere, hospital beds, and people coming in all through the night to take my vitals and give me meds. But there were also all sorts of crazy contraptions to help get me moving and therapists that knew just how much to pick me up and where and how to brace my weak limbs so I could begin gait training (a fancy term for re-learning to walk).  They would hoist me up so most of my weight would be off my legs and then they would work as a team to help me inch forward.  They knew exactly how to push me to the point where I couldn’t take any more, but no further.

The staff became like family. They rejoiced in the smallest of victories and comforted me when I felt like the physical pain was too much to bear.  They ran down the hall when there were problems and sat on my bedside when I didn’t want to be alone.  They woke me up before the sun, sharing scripture (which I welcomed) and stories of overcoming their own challenges.  They saw straight through my own b.s. and called me out on it in a way that wasn’t rude or disrespectful, but loving. Like a parent.   And they listened to me and worked together to make daily adjustments so that I would be able to function, albeit at a new normal, by the time I left.

My stay there was only three weeks, but it felt like much longer.  I started out taking photos as a distraction but then I found that it forced me to move around and become more comfortable using my wheelchair. Sometimes I would only feel like sitting up in bed and taking photos of my food, and others I wanted to photograph flowers.  The weekend my kids came to visit was clearly my favorite – I wanted to soak every second of them in and have proof that they had been there when they were gone. Some of the photos I took are too personal to share – I’ll save those just for me.  But here are a few others from my stay. The photos are a mix of iPhone and “real” photos, with a few (most of the pictures with me in them) taken by my husband.  They’re not perfect and they’re definitely a lot less shiny and happy than usual but they’re honest, raw and taken from my new (temporary) eye level.  This is the view from my chair.

– Holly

Coming in the door, I was greeted with a huge sparkly sunshine – the kind I always tried to draw as a kid but never quite pulled off with such pizazz.  This one was not only extra large and happy, but was directly adjacent to another painting that reminded me of the waves nearby.  The artwork was so adorable that I hardly even realized that the paintings had been made to adorn the new handicap ramps leading up to my front door.  Everything was fresh and bright and the kids were acting like their silly selves, but something just felt off – like something had been missing… Then I realized the something had been me.

I recently spent a month in the hospital fighting Acute Inflammatory Demyelinating Polyradiculoneuropathy (AIDP) aka Guillain-Barre Syndrome, or GBS.  One month, two hospitals and several hundred miles from my family.  When I went in to the ER on a Friday night I never could have imagined all that would transpire.  I walked in with my legs weak and my heart racing, but I walked in…

As I lay here sprawled out on the couch it all seems like some sort of crazy dream – surely I’m going to get up and walk to the kitchen and laugh about what a long nap I had.  But then I sit up and realize my eyes are wide open… I move to the edge of the couch and have to drag my legs to transfer to my wheelchair and realize that yes, I’m still wide awake and no, this hasn’t been a bad dream.

Ten days ago I was finally discharged from a short-term rehabilitation hospital to recover from home.  I’m not cured, but right now I’m waiting for the damaged nerves to start healing, which is pretty much like waiting for paint to dry.  Now that I’m back at home, there are two questions that people have – “How are you doing?” and “Can you walk?”  My response to both, so far, has been either a sigh or silence.  Because, honestly, I’m not sure how to answer. At least, succinctly.

With GBS, there is no cure and the course of the illness varies drastically among patients-  some patients are mildly affected and only have some numbness and tingling while others lose control of every part of their body and end up on a ventilator for months.   Who is affected, how they’re affected, and how they recover makes absolutely no sense.  GBS doesn’t discriminate.

The course of my illness has fallen somewhere in the middle – GBS has affected many different types of nerves in my body and some have been more severely affected than others.  I was fortunate enough to receive a disease-modifying therapy (IVIG) that, in some patient populations, has been shown to lessen the severity of the illness and accelerate the recovery, but there is no way to know if and how well it worked.   The only way to tell how a GBS patient will fare long-term is with a crystal ball.

As for now,  my hands work, but they’re clumsy, weak and a bit numb at times.  I can type and am gaining sensation in the one hand that was more severely affected, but if I put them under water they’ll feel two different temperatures. As for sharp knives??? I’m sure I could handle one if I really concentrate but… That’s not something that my husband is comfortable letting me try quite yet.   My blood pressure and heart rate are finally under control but are going to have to be closely monitored as I recover and my breath support and swallowing are doing much better.  Half of my face is still pretty numb as well, but I’m finally able to smile.  I’m tired a lot. Very, very tired.  But the level of exhaustion depends on what I’ve been doing and what kind of therapy I’ve had that day/how hard I’ve pushed myself. One moment I can feel peppy and strong (typically in the morning) and then a few hours later I can feel weak and so tired I can hardly hold my head up.  Having girls around to remind me to get out of my PJ’s, brush my hair and put on some makeup has gone a long way toward making me feel “normal” again, and one of the few outings I’ve taken in over a month was to get my hair cut.  (Then I slept.  A lot.)

The answer to the second question – “Can you walk?” is much simpler. “Not yet…” I can finally move my legs some (I couldn’t at all when I went back in the hospital five weeks ago), but I can’t yet bear my own weight or stand on my own, which means I’m in a wheelchair.   I’ve tried to stand on my own outside of physical therapy once or twice –  I got in big, big trouble. One of the best descriptions I heard of a patient with GBS is that they had “jello legs.”  They’re there. They can wiggle a little.  But if you try to put weight on them they give out. Just like jello. As a result, I can’t yet be left alone for very long in the event I fall and can’t get up.  Yep, just like the old people in the TV ad.   I would say that this level of Holly supervision is overkill, but I kinda sorta fell out of my wheelchair in the hospital just before I left and ended up face-down on the floor.  I was laughing hysterically, but then realized I couldn’t get back up to the chair or a bed so I laid there for a while until I was able to summon someone to help. There was lots of paperwork that had to be filled out and the incident was chalked up to “user malfunction.” Seriously though, remembering all the tricky parts of wheelchair life like putting on the brakes takes a little getting used to… I promise I’ve learned my lesson though…

All jokes aside, this month has been intense.  GBS is one of the strangest and most frustrating illnesses I’ve ever run across.   I’ve spent the past month laughing about how ridiculous this illness is (when I’ve been awake and in the mood to laugh), and now that I’m home the laughter is mixed with increasing frustration because I’m ready for all this to be over.  My entire family and support network is exhausted and ready for this to be over as well… Thinking back on how far I’ve come over the past couple weeks though, where I am today really is a miracle.  An honest to God miracle…

If I’ve learned anything about GBS it’s that it will do everything it can to beat a person down.  It’s a marathon of tears, fear, praying for healing and hoping for miracles.  It not only tries to steal the happy away from people, it keeps them from smiling both inside and out. It drains you and frustrates you and literally freezes your facial muscles, taking away your smile.

I may not be walking or have the most amazing handwriting yet, but I’m finally able to smile again.  And when I make it outside I have a huge, sparkly sunshine and some ocean waves painted on my doorstep to remind me that I have a long way to go but I’ve made it home.  And that’s something we are all giving thanks for.

– Holly

p.s. – We are still continuing to raise money for GBS research and advocacy efforts through the sale of cute t-shirts.  If you haven’t bought yours yet, head on over and check it out! (Click here.)

 

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

• For more info on Guillain-Barré Syndrome (GBS), you may read this overview from the Mayo Clinic or this fact sheet from NIH.

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.