Monday, April 29, 2013

I was telling someone just the other day that having Rheumatoid Arthritis has taught me more about compassion than anything else ever has. Before facing my own chronic illness, I didn't really understand what it was like to endure this kind of thing. "So, what is it really like living with a chronic illness?" was the follow-up question, and I wasn't at all sure how to explain it. In the time since, I've pondered it, and this is the closest I can come.

There are days...

There are days when I'm exhausted in every imaginable way. The pain, be it mental, physical, etc., of a chronic illness is only multiplied by the unrelenting constancy of it.

There are days when the illness is still there--it's ALWAYS there--but it seems less overwhelming somehow, days when I'm dealing with things pretty well and I feel like I'm gonna beat this thing eventually.

There are days when I dread sleep because the pain doesn't leave me even then--I dream every night of being in pain, and I wake up every bit as exhausted as I was before.

There are days when the prospect of facing another day of pain--there aren't ever any that are free of it--is almost too daunting, and I have to work to get myself out of bed.

There are days when I think about spending the next forty or fifty years this way and I'm not sure I can do it. I'm in that difficult place with chronic illness where the right treatment hasn't been found. I know it will get better. I know that. I find comfort in that. But when someone is in the middle of suffering, especially suffering that is so unrelenting, the reality of "now" and the pain of the moment is sometimes all a person, weary from constant battle, can truly process. And there are people who don't have that promise, who are facing the rest of their lives without relief.

There are days that are good. My spirits are up. My strength is up. And I'm feeling good about life.

There are days when I'm faking it, when the smile is forced and the cheerfulness is an act. Sometimes, it's because I just don't want to talk about it or defend myself to people who insist that a frown, a single word of complaint, any physical concession to pain, etc., means I'm a failure or not being strong enough or not dealing with my illness properly. Sometimes, it's because I'm trying really hard to have a better day.

There are days when people are harder to endure than the pain. People toss me dirty looks because they're stuck behind me on the grocery store aisle and my labored movements are slowing them down. People mutter under their breaths when my hands give out and I drop something in the check out lane and everyone behind me has to move to another one while the mess is cleaned up. People take the time and effort to send insulting and belittling emails because, somehow or another, they believe it would be a helpful or appropriate thing to do. People tell me that I have a chronic illness because I must be a terrible person who somehow deserves it, or that if I really wanted the illness to go away, it would--as if having an illness is irrefutable proof of some kind of personal failing. There are days when people cause far more pain than any illness ever could.

There are days when people are my saving grace. People smile empathetically as I struggle to run errands. People assure me "it's okay" when I drop things or can't carry things, and do what they can to help. People take the time and effort to offer words of encouragement, however small. People support me through this illness without judgement or dismissal or hateful words. There are days when I am absolutely in awe of the kindness that people are capable of.

I think it's hard to understand what a chronic illness is like without actually having one. And when I'm asked what a person can do to help another who is struggling with chronic illness, the only thing I can really say is, "Be compassionate and err on the side of kindness, because there are days..."

Friday, April 19, 2013

Like so many people throughout the world, I have found myself struggling lately to make sense of things. Why is it that some people feel the need to hurt others, whether through hateful words or violent acts? How can any person justify a life lived to destroy instead of build, to hate instead of embrace, to cause pain instead of heal wounds? And why, why, do these painful moments, both big and small, seem to happen with such disheartening, alarming, and heartbreaking frequency?

Headlines scream of senseless acts of violence. Online commentary is shockingly vicious and unfeeling. The world seems to spin with constant criticisms. There is far too much hatred, unkindness, selfishness, and violence.

The day of the horrifying tragedy in Newton, Connecticut, I wept, my heart breaking. This past Monday, watching news of the bombings in Boston, I did the same thing again, my heart cracking anew at the pain and devastation wrought, once more, by senseless violence. In December, after the school shooting, my then-nine-year-old daughter said something amazingly astute:
"When your heart breaks, you choose what to fill the cracks with. Love or hate. But hate won't ever heal. Only love can do that."
We are all struggling to make sense of the terrible things that have happened lately. We hold our collective breaths, knowing this kind of thing will inevitably happen again. We want to believe that those who build each other up still outnumber those who choose to tear others down. We look for reason to hope that the balance hasn't forever tipped toward hatred. And, in the midst of our feelings of helplessness, we want to do something. Anything.

I have given myself a challenge and want to extend it to you.

This coming Monday, April 22nd, the one-week anniversary of the bombings at the Boston Marathon, let's tip the balance back toward goodness, kindness and love. Let's fill the cracks in our hearts with compassion. I plan to do a random act of kindness that day, I don't even know what yet, but in some small way I mean to make my tiny corner of this world a better place.

Let's counter random acts of violence and hatred with random acts of service and compassion.

It won't change the world. It won't make the pain and reality of all we have seen and experienced go away. It won't even stop future senseless moment of suffering. But in our small way, we will be demonstrating what the human race truly stands for, that we can be compassionate and caring.

As you are going about your day, look for an opportunity to help someone. It needn't be big or flashy, perhaps the person you help out won't even know it was you. Leave a generous tip for an overworked server. Offer words of encouragement to someone who needs it. Volunteer. Send a thank you note to your child's teacher. Give blood. Just do something. Make the world a better place. Make a difference in someone's life. That is what being human is all about.

(The Facebook "Random Acts of Kindness" event page:

Friday, April 5, 2013

I made a new friend at Costco last week. He is somewhere around 80 years old, with an easy smile and a twinkle in his eyes. He was relaxing on the display of patio furniture when I arrived at the same display fully intending to do the exact same thing. I was on my first trip to Costco since RA showed up determined to be my new frienemy. Pushing that enormous cart around that enormous store was proving painful and exhausting.

I limp. I limp a lot. And shuffle. And kind of hobble. My patio-furniture friend absolutely had to have seen this in the moments before I plopped down on an inviting chair. 

He asked if I was okay. I told him I was struggling a little, that I had Rheumatoid Arthritis and it was kicking my proverbial teeth in.

My new BFF nodded sagely. "I have arthritis," he said. "Old people arthritis. Makes life tough."

"Yes, it does." I motioned to my tired, pained body taking a rest after only a few minutes of shopping. "And, clearly, today the arthritis won."

He leaned forward on his patio chair. His kind eyes met mine. "Sweetie," he said. "Any day you get out of bed, you win."

Today, my sage friend, wherever you may be, I won.

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. 
--Henri Nouwen

Thursday, April 4, 2013

I haven't done any signings since Drops of Gold came out, mostly because RA arrived at my doorstep at about the same time and I haven't had the stamina or endurance to do anything but survive from day to day. However, I am super, super excited to be signing at Deseret Book's "Ladies Night" with the 2007 & 2013 (!!) winner of Utah's "Best of State" medal for fiction, Annette Lyon, at the...
Deseret Bookstore at University Mall in Orem Utah
This Saturday, April 6

If my hands give out before the evening is over, maybe I'll recruit someone to sign for me. Y'all know how to spell "Sarah," right?

Stop by if you can. There'll be prizes and food and lots of fun!


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