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.
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.
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.)
“We’re praying for you. Please let us know how you’re doing and what we can do.”
I’ve said it a million times and have been on the receiving end of the phrase even more. I’ve always meant it – I want to know what’s going on so that I can support my friend, but I don’t want to be nosy. I want to help, but I don’t know how.
Over the past couple months, I’ve had people step up in the most incredible ways. We’ve been loved and supported not only by family but neighbors and friends. I recently made a post on my personal Facebook page about a dear friend that went out of her way to make a special allergy-safe meal for my family. Their family has similar food allergies, so she was one of the only people I would feel comfortable making a meal for us. But I was still uncomfortable… Not with the safety of the food, but the fact that she took so much time to help us out. With the fact that I had to say “Yes, actually, things aren’t totally sunshine and rainbows – we could use a helping hand.” What I realized then was that was my own issue with self-reliance- I don’t want people to help me out or know the messy nitty-gritty of how things really are. I want to be able to do it all myself and I don’t want to have to let others in. I don’t want them to see the messy. Accepting that you need help and then receiving it truly harder than giving.
Lately, I’ve been forced to change my attitude because I clearly can’t do it all myself.
“Can someone please get the door? Can someone grab my stuff? Can someone please help me shower?” In a short time, I’ve gone from being an independent, strong woman to someone that, at moments, literally hasn’t been able to do anything for myself. Someone who has had to be physically turned in bed to prevent bed sores, assisted in the bathroom and, unable to bathe myself, allowed a stranger to give me a sponge bath and wash my feet.
A stranger… Washing my feet…
Guillain-Barre Syndrome (GBS) takes away a person’s pride in a hurry. There’s no other choice. Just like any other crisis, it affects not only the person fighting the illness but their entire inner circle. Everyone is in it together. Everyone is affected, but in different ways.
Before I ended up back in the hospital, I’d started reading a book called “Just Show Up” by Kara Tippets and Jill Lynn Buteyn. At first, I thought it might give me a few pointers on how to be a better friend to those going through hard things. And it has. But it has taught me far more about opening up about the truth and learning to accept help. Learning to accept help requires true humility, which is not in our nature. At least not in mine… It’s something I’ve been working on though.
One of the sections of “Just Show Up” talks about how one of the authors, Kara, dealt with cancer and how she was forced to humble herself and allow herself and her family to be loved as she dealt with chemotherapy. Her struggle went on a while and she ended up writing and sharing her experiences so that others may learn from them. I’m so glad she did.
Her friend, Jill, writes “One big way Kara has given back to us is by keeping us informed of what’s going on. She’s blogged and been very open during her whole journey…. While I completely understand the need to keep certain things private in suffering, figure out what you’re willing to share and then finding an avenue to do that is a big blessing to those around you. It helps them know how to pray and how to help, in addition to giving them a way to know how you are and what’s going on without having to ask.”
I was reflecting on that passage the other day when I received a phone call from someone I’d befriended last fall – a priest with a heart of gold, love for God and a way with words. He had no idea what had transpired over the past couple weeks and was simply calling to check in. As I told him where I was and what had come about, he shared with me some thoughts on humility, pride and humiliation. I tried to take notes, but my hand was fatigued and my writing nearly legible… Our conversation centered around people sharing their stories to glorify God and how He doesn’t always mean for us to be comfortable. After I’d shared a little bit about what was going on in my life (and my family’s) I told him how recently I had been sharing part of my story and encouraging others to write their own, but I was uncomfortable sharing the truly hard parts of my own. I was in a wheelchair, bloated beyond recognition, and I didn’t want anyone to see me. The visual aspect of it – the sudden weight gain and loss of mobility was oddly one of the hardest parts for me. It’s much easier to share the pretty and the easy – the things that make people smile. Who wants to see some puffy, middle-aged woman complain about how hard things are when things could always be so much worse? I told him that I was torn because I’d received so much encouragement over the years, particularly lately, to share my story but I wasn’t sure whether I should continue to write about my recent “journey” anymore.
He asked me point blank – “What’s the worst that could come of it?” I fumbled for a minute and said “Well…I guess… People would look at me like a complainer. Or someone that wants attention. Plus, they’d see the really ugly parts…”
He said something along the lines of “There’s a difference between people who are simply sharing things for self-promotion or to get likes… They don’t feel the level of discomfort that you feel. There’s something to that… God doesn’t always mean for us to be comfortable. I’m not saying that you should or shouldn’t do something, but pay attention to the discomfort. Let me ask you this… What would you do if nobody cared? If there was no fear?”
I responded, “I would share the parts of my story that are unique to me (not belonging to my children) in hopes that others would feel like it’s okay to not have all the answers. We all have our own hard things – each of us does. Feeling like you have to be perfect all the time can be incredibly isolating. NOT talking about these things (in an appropriate way, with the right people) can really mess you up. I have absolutely no issue admitting upfront that I’m a hot, hot mess and have more baggage than a 747, but I still believe there is a purpose to all this. There has to be.
But… I’m still not sure why I should bother. Isn’t it incredibly narcissistic to think that anyone would care? What difference can I make?”
He shared about what a difference an individual person’s testimony can make and encouraged me to read the book “He Leadeth Me” by Walter Ciszek.
“Yeah…” I responded. “But that guy went through some serious stuff. He should have written about it. Me…”
He explained “We’re only supposed to do our part.”
A little uncertain about what that meant, I went about my weekend and focused on recovering from the busy week. I decided that maybe part of what he meant was that my ramblings would serve to inform those that want to pray for us to know exactly how to pray and what we need.
Then I made an outing to the gift shop downstairs in the hospital for a change of pace and met a nice lady in a wheelchair. Overly curious, I asked her about how she ended up in a wheelchair and how long it had been. I could tell that she was a little taken back by my boldness and I began to question whether I should have asked. It suddenly occurred to me that my going around and asking other people in wheelchairs how they got there and how long it had been was the equivalent of my four-year-old asking people what their dog’s names are and where they live. Innocent but naïve.
She shifted in her chair for a second and looked a little uncomfortable. Then she began to share a story of incredible bravery and strength – far beyond anything I’ve ever experienced. Her story is for her to share, but I can tell you that it was the kind movies are written about. She shared openly and then took a breath and said “You know… People don’t ask me much anymore… It’s been a few years… But I have learned a lot and don’t mind telling my story. I’ve come through depression and fought for my children. They told me I’d never walk and here I am. I still need my wheelchair and I’m in a lot of pain, but I can take a few steps sometimes. It’s a messy story, but I’m alive. I learned to walk again for my children because I didn’t have any other choice. I’m fought hard and I’m alive.”
We sat a while as others walked past and I soaked up her strength. I realized that sharing our stories is a very personal thing. For me, it’s easiest to sit behind my computer or camera and process and share life that way. I’m doing my part to push through the discomfort to help my family and friends know how to pray for us. I’m uncomfortable sharing the messy and asking for help, but when I do it from the safety of my computer it’s a little less scary. I’m making a difference by being honest with my tribe so that they know how to pray. To pray for humility, freedom from pain, resiliency, and recovery.
For my new friend, she chooses to share her story one-on-one, as a personal testimony of human strength. She is proud of all that she’s overcome and appreciates the opportunity to share her testimony with others. She’s not trying to change the world, she’s just trying to do her part to encourage someone.
Both of us are pushing through the discomfort and doing our parts the best we know how. I can’t promise that I’ll write regularly, but I’ll try to share some photos I’ve taken along the way as well as our prayer needs. It may not be pretty, but it will be real and full of hope that all this will serve a purpose one day.
p.s. – We’ve decided to extend the t-shirt campaign and donate proceeds directly to GBS research and advocacy efforts. Order your shirt here today and help fund the efforts of The GBS/CIDP Foundation International.
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.
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.
Hi! I’m Holly. I’m a wife, mother, writer, photographer, food allergy mom & GBS survivor. I've photographed countless couples and companies all over the country and created a line of products that help keep food allergy families safer. I love helping women conquer life’s challenges and live a healthier life. I live in the beautiful Panhandle of Florida. You can learn more about me here!