How do you mentally get through something as awful as Guillain-Barre Syndrome? Physically surviving and fighting is hard enough. I cannot adequately explain the terror of GBS. No one could tell me why I got it, how bad it would get, if I would recover, how long until I could walk again, if my face would recover…. or even if I might get GBS again. As I laid in my hospital bed fighting to breathe as my diaphragm grew weaker, I focused on being thankful that I was still alive. I had been reading the book One Thousand Gifts and the message is that thankfulness comes before the miracle, and I really needed a miracle.
As I continue down my road of recovery, I have heavily relied on books to help me through this battle. Obviously I would love it if my book helped you through whatever battle you’re fighting. But I also want to share the books that have helped me.
One Thousand Gifts: I was reading this before I got GBS and this made a tremendous difference in my attitude. Instead of giving up and succumbing to the horror that is GBS, I chose to focus on being thankful that I was still alive. I would find tiny victories every day for which to be thankful and this helped me keep a positive attitude in an incredibly negative situation. “As long as thanks is possible, then joy is always possible.”
Option B: Facing Adversity, Building Resilience, and Finding Joy: When you’re in the midst of fighting for your life, all of your mental and physical energy goes into surviving. It’s not until later that you begin wading through the grief of the battle. Two months after I was released from the hospital, but still entrenched in my recovery, my Grandpa passed away. My #1 Buddy. My very first best friend. My biggest cheerleader. The man that carried around pictures of me in his wallet to show everyone “what he grew in his garden.” I had much to grieve. This book really helped me with the grieving process. It includes a good amount of case studies that helped me better understand what I was feeling and how to manage those feelings. Here are a few golden nuggets that really helped me: “Some things in life cannot be fixed. They can only be carried.” “I won’t make your skin crawl by saying it’s a ‘blessing in disguise.’ It’s not a blessing and there is no disguise. But there are things to be gained and things to be lost, and on certain days, I’m not sure that the gains are not as great as, or even greater than, the inevitable losses.” Here is golden advice for anyone when it comes to comforting a loved one that’s going through a hard time: “The two things we want to know when we’re in pain are that we’re not crazy to feel the way we do and that we have support. Acting like nothing significant is happening to people who look like us denies us all of that.”
Emotional Agility: I’m not the same person I was before GBS. I have the same values and priorities, but how I frame them is different. I won’t induce your gag reflex by explaining how precious life is (but duh, it is). When I was released from the hospital, I was spreading myself too thin because I had the expectation that I could do everything that I used to be able to do. I could not and the stress that I was putting on myself caused flare ups that were physically painful and a mental kick in the ass. “Acceptance is a prerequisite for change.” I had to learn to accept where I was and focus my energy on my “why” instead of impulsively saying yes to everything. “Walking your why is the art of living by your own personal set of values…” I can’t recommend this book enough to absolutely everyone. It really helps guide you to release your expectations, stress, and grow through meaningful opportunities. “Denying stress, bottling it, or brooding about it is counterproductive. Avoiding stress is impossible, but what we can do is adjust our relationship to stress. It doesn’t have to own us. We can own it.”
Everything Happens for a Reason: And Other Lies I’ve Loved: Kate Bowler is an assistant professor at Duke Divinity School. A graduate of Yale Divinity School and Duke University, Bowler is the author of Blessed: A History of the American Prosperity Gospel. Like Kate, I grew up in church and subscribed to the Prosperity Gospel, that financial blessings and physical well-being are always the will of God. Then I got GBS. To be clear, GBS hasn’t caused me to question my faith. I can remember laying in the hospital, unable to move my legs, and trying to figure out God’s reason for it, which makes me laugh now because honestly who the hell knows. Kate’s battle with stage IV cancer at the age of 35 and subsequently writing this book that stares down the notion that no amount of positive thinking can shrink cancer tumors, is tremendously helpful. Sometimes shitty things happen and you don’t have to put on a happy face about it. “I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a cat poster that says Hang In There!” The part of the book that I would like every person in the world to read, is actually the appendix. I thought I was the only person going through a bad time that was irritated by certain (painfully common) remarks. Turns out, she made a convenient short list of what you should NEVER say to people experiencing terrible times, and explanations. Here are some that especially apply to GBS….”Well, at least…” just stop right there. Don’t minimize. “It’s going to get better. I promise” Well, fairy godmother, that’s going to be a tough row to hoe when things go badly. “God needed an angel.” This takes the cake because (a) it makes God look sadistic and needy and (b) angels are, according to Christian tradition, created from scratch. Not dead people looking for a cameo in Ghost. “Everything happens for a reason.” The only thing worse than saying this is pretending that you know the reason. She also offers a list of truly helpful things to say. We should all commit these (my even more abbreviated list) to memory. “I’d love to bring you a meal this week. Can I email you about it?” This is my favorite on the list because it meets the friend’s need to do something and the person’s actual need. It doesn’t have to be food. Anything really. Even a funny youtube clip just to make them laugh. “Can I give you a hug?” I like this one because you need to ask for permission before touching someone with neurological damage. For some GBS fighters, a hug would be incredibly painful. I couldn’t really feel hugs that much but the gesture is truly amazing. “Oh, my friend, that sounds so hard.” Perhaps the weirdest thing about having something awful happen is the fact that no one wants to hear about it. So let them talk if they want to and don’t stop them at the gritty details that they’ve had to live through. Life is absurdly hard, and pretending it isn’t is exhausting.
Feel free to share any books that you’ve found helpful as well!!