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.)