This letter has been over two years in the making, and it is high time I take the time to write it. If you've followed us on Facebook for a while you've likely noticed I'm sick a lot. Or ever written an email that took a few days longer than usual to get a response? Or wonder why I'm always sitting on my duff when you shop in person. Here's why -
A little over six years ago I had Guillain Barre Syndrome. Haven't heard of it? You aren't alone. Affecting 1 in ~200,000, it isn't one that typically gets a whole lot of air time (that is, unless you are working alongside Hugh Laurie or the medical voiceover guy who explains all the scary side affects on drug commercials). In short, one day I was perfectly healthy, then sick with a bad cold for a few weeks, then paralyzed in a hospital bed, my nerves so badly damaged I couldn't move. Thankfully I never had to be placed on a ventilator, but I did come very, very close. After months of hospitalization and therapy to relearn to walk and talk, I was back at grad school. Now, six years later, I still suffer side affects - fibromylagia, chronic fatigue and more. I still devote 3-8 hours a week seeing various folks to help recover the muscle loss and treat the pain. For better or worse, it is a defining characteristic of me, and my family's life.
My last year of grad school (two years post-GBS) my professor asked each of us to briefly explain our favorite hobby. Thinking long and hard, I couldn't think of anything I'd done with any consistency since beginning the MA program. I said there wasn't anything. And she replied - 'oh yes there is, you've got your physical therapy.' That moment was a low point for me. To be so intertwined with this awful point of my life that it is viewed as my 'hobby?' One word - ugh.
Fast forward - after overcoming the worst of the residual effects, I finally became pregnant with our little girl. She was, and is, positively amazing. And the single most energetic, never-stop-moving little child I've ever been around. How someone with chronic pain and fatigue could be blessed with such a tornado I'll never know.
But what does having a child and an illness that means one day you are able to run one errand, maybe another day actually go for a walk around the block, while the next you are so sick the couch is the furthest commute you can manage? Pretty hard to find a job. At least, a job that would be ok with my required number of sick days.
For a long time I knew I wanted to own a business of my own. Once I found cloth diapers, the two passions quickly became one. And here was something that started as a hobby (look Professor, a hobby!) that I could finally put to good use. No longer would I be ruled by my illness!
But, it still is what it is. If you've ever visited our Brookside store, you've likely witnessed one or more of my coping tools -
We have limited hours, and will keep them limited - this will hopefully ensure I always have enough energy to be there during open hours. I never want to nor will outsource my business. This is my passion, and to remove myself from the education aspect would be a disservice to all.
I've perfected what I call 'the lean.' Find a well-bolted object and lean all your weight in to it. You appear to be standing, yet very little exertion is required.
Crossing ones arms. Being one who loves to talk with my hands, this is a work-in-progress. But, leaning+crossed arms means very little work required of the nerves (which are what fatigue first, not the muscle itself).
Get stools behind the cash wrap and comfy couches for consults. In sum, sit whenever possible. But make the sitting look somewhat natural, and not just me on my duff all the time. Good thing pregnant women also like to sit! Ever come in the shop and we are all sitting on the couches talking diapers? Yup. Sitting whenever possible.
Marry someone really, really understanding. So this might have been a pre-GBS move, but it nonetheless is fantastic to know there is someone who can move those boxes for me, and lift the toddler when I'm otherwise too tired to see straight.
Accept help. Being someone who is fiercely independent and stubborn, I wasn't one for offers of help. 'Oh, I can manage' used to be my motto. I've had to change, and, in the process, formed amazing new bonds with those around me. Friends who bring brownies (gluten-free!), offer to help with Avalee on low days, and are more caring than I can ever express. Means the world.
Apologize for the delay, a lot. There are just some days when things have to come to a screeching halt. Pain, fatigue, what-have-you, prevents me from working. I'm sorry for anyone who has ever gotten frustrated with a delayed email or phone call. I wish I could still be my type-A^2, pre-GBS self, but alas, it just isn't an option. I do my best to manage my family's needs, my body's needs, and the business, but some days there just isn't enough energy to go around.
Ever wonder what life is like for someone with chronic pain or fatigue? Check out this wonderful anecdote. Her analogy is spot on, and very helpful. And now you are in on a bit of secret code. If you ever see anyone offering me their spoons, you'll know why!
If you read all this way, thank you, friend. It is such an honor to work with such amazing customers. I love the chance to watch women become mothers, men become fathers, and the newest babies grow in to their infant- and toddler-selves. It truly is a joy, and I cannot imagine life without this opportunity. While GBS may have defined who I was in the past, and still has a very-strong hold on my present, I see IBB as my future, and will continue to work to serving you even better. Thank you, again.