Disabled and Whole

It doesn’t feel like Christmas until Dad sings O Holy Night. Some of you reading this have had the honor of hearing my dad’s gorgeous rendition of this in person. A video just doesn’t quite do it justice. It’s a powerful song in and of itself, and when my dad starts to sing, I like to just sit back and drink in the Christmas magic.

We’ve been listening to the song more often this past week, but not just because it’s part of our usual Christmas soundtrack. Roman is singing it with kiddos at church on Sunday, and they practiced up front after service last week. For Evan and I, it was like Christmas morning watching the joy on his face as he sang and danced. To Roman, this was not a rehearsal. Kids are so awesome that way. They live life so raw and authentically. As the song played, in that moment, he gave it all he had. I love that about him.

As I’m smiling and watching these sweet kiddos rejoice so naturally, a line in one of my favorite Christmas songs of all time hit differently this year. I think you may know the one I mean.

A thrill of hope, the weary world rejoices.

The weary world rejoices? (Insert weary sigh of a 31 year old toddler mom who has multiple sclerosis.)

Insert your own weary sigh if that’s honest for you. Even amidst the Christmas season, weary might just be the word to describe it.

To some of us, listening to this line “the weary world rejoices” might make them feel like clapping or belting the line out with Christmas cheer. To others (or maybe even the same person, but at a different time in their life) it might feel more like a question or an impossibility. Sometimes, we are in a place where even hearing that a weary world would have the audacity to rejoice when there is so much awfulness may make us angry because our minds cannot conceive of the pain and suffering in this world. The weary world rejoices? Really?

While I started this blog as a place to hopefully bring warmth and light to your life, reader, I mainly started it as a safe space for humans to acknowledge what they are truly made of: dust and the mystery that we call “life”. Some of us call this life that inhabits us the “Imago Dei”, the image of God, or even the breath of God, but what I think we all have in common is that the “life” pulsing through our veins is not something humanly manufactured.

In this blog, I share true stories from one woman’s lived experience with MS. I’ll keep writing on living with and fighting this disease, on grief, on love, on God, on hope and on the reality of moving through pain and suffering in this life. Sometimes, this will be in more abstract terms. Other times in concrete terms from my own experiential knowledge of what it feels like living with MS.

In the past 3.5 years of living with a chronically neuro-degenerative disease and chronic nerve pain that can (and does) bring a grown woman to her knees, I realized I’ve been getting what I’d describe as somewhat of a Bachelor’s degree in some of the less abstract and more undignified parts of multiple sclerosis. Except this degree is one that doesn’t come with a graduation day in this life, so the learning continues.

Please hear me correctly. Experiencing suffering or having suffered in life does not then automatically qualify one to speak on suffering, so I am in no way saying “I know what I am talking about”. I’m young and I know many of you reading this are well-acquainted with what it means to suffer and persevere beyond one’s own capacity.

What I can honestly say (but not without crying) is that living through suffering is drastically different than working it out in the abstract. Many of you reading this might be hoping for a philosophical expose in this blog on the problem of evil and pain and suffering, and oh man, that’d be something I’d love to discuss as time goes on. There’s a lot in that. While I’d love to grow into that discussion, when you are in the midst of deep trial, your mind and heart don’t always have the resources to move past the “next thing”, let alone try to answer for the problem of evil in the world.

Rather, this Christmas, I’d like you to take a moment and check in with yourself. Are you weary, world? Maybe you are not weary, and that is to be cherished, but perhaps someone in your life is weary to the bone and that weighs on you.

In this moment, where are you at?

I googled the definition and when I read it, it kind of made me kind of nervous-laugh by myself while I write in this coffee shop because it sounds like so many of us.

Here’s the definition if you want to nervous laugh along with me.

Weary. wear·y

/ˈwirē/

adjective

1. feeling or showing tiredness, especially as a result of excessive exertion or lack of sleep.”he gave a long, weary sigh”

At some point in life, we all will answer yes to this question or be in pure denial. But it’s true. Life will, at times, wear and tear at us, sometimes more than we thought humanly possible.

How could a weary world rejoice then? Is it even offensive to rejoice right now in the midst of my own pain or the pain of the world?

Well, I could go the route of telling you how Jesus is the “reason for the season” or that we rejoice because Jesus was born. Do I believe these are reasons to rejoice? Yes!

But that’s not exactly where I’m going in this particular pre-Christmas post. To many reading this, those answers to the question “How could a weary world possibly rejoice?”, will seem trite and shrill, based on the pain or suffering you or your loved ones have or are currently experiencing. Like an impulsive jingle bell that didn’t know when to quit, grating to the ears and, in this case, the heart.

So where exactly are we landing the plane in this post? The line previous to “the weary world rejoices” in “O Holy Night” points us to the runway. It says: “Til He appeared and the soul felt it’s worth. A thrill of hope….the weary world rejoices.

“Til He appeared and the soul felt it’s worth.”

Books upon books have been written about the “Til He appeared” part, the concept of Emmanuel, God with us as a human man while also being God Himself.

But many reading this may not be so sure that “He did appear” at all or care all that much if he did. This particular blog post is not an “apologetic” one in its purpose, trying to convince you once and for all of the existence of God, let alone the incarnation of God in human form, specifically Jesus.

The purpose of this post is to simply prompt you to slow down in this moment, breathe in deep and let your soul feel its worth this Christmas. Do I believe that a fully-good God displayed that He sees each human life as priceless based on His laying down His own life to be with us forever? Personally, yes, I do. In the 31 years I’ve lived thus far, have I always felt the true worth of my soul? No, in all honesty, absolutely not.

When a human being experiences any degree of pain or suffering in their life, whether it be physical, mental, emotional or spiritual, it is easy to forget your soul’s worth. Much of the time, it is hard to even think at a “soul” level because you are simply breathing moment to moment through the pain.

Perhaps, this Christmas, you’ve really been feeling like you aren’t worth all that much. This might just be the reminder you need this holiday season that the life that flows inside you is ultimately unexplainable and that makes you worth more than you could imagine. Let your soul feel it’s priceless worth this Christmas, friends, and feel the precious worth and “borrowedness” of the souls bustling around you this holiday. If you open yourself up to the possibility that your soul’s worth is immeasurably more than you can humanly understand, like the mystery of that unexplainable life flowing through your veins, I cannot promise you that the “weariness” will disappear magically, but you might just have the tiniest, most faintest thrill of hope. And hope of any kind, dear friends, is worth rejoicing over.

Merry Christmas, to all you weary, yet worthy souls! Love, The Burgesses🎄❤️

Evan, Chelsey, Roman, Professor Minerva McGonagall (Minnie) and Don Quixote de La Mancha (Donnie)