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.