I want to share with you my piece that was recently published by Yahoo Lifestyle and The Mighty. But I also want to include here more personal content than was distributed in these publications. As we approach the four-year anniversary of my diagnosis this month, I am especially aware of the debt I owe each of you. You have carried me on this divine detour. I hope this site has made yours a bit easier along the way.
It’s hard-wired in us to desire God’s perfection. We have an innate knowing of how things “ought to be.” As His eternal creatures, we yearn not so much for what used to be, as we do for what should be.It’s hard-wired in us to desire God’s perfection. We have an innate knowing of how things “ought to be.” As His eternal creatures, we yearn not so much for what used to be, as we do for what should be. Click To Tweet
We all mourn the loss of expectations in some form. I, too, grieve not for who I was pre-illness, but for who I should be today, without it.
I am learning that with most people, because of illness or loss of another kind, life is rarely what they had planned, and never what it appears from the outside. Behind every pair of eyes lies a soul engraved with a complicated story we haven’t read. We only see the cover or a few chapters at best.
A few months ago, a dear friend placed this in my hand and said, “Read this.”
“The death of a spouse or partner is different than other losses, in the sense that it literally changes every single thing in your world going forward.
When your spouse dies, the way you eat changes.
The way you watch TV changes.
Your friend circle changes (or disappears entirely).
Your family dynamic/life changes (or disappears entirely).
Your financial status changes.
Your job situation changes.
It affects your self-worth.
The way you breathe.
Your brain function. (Ever heard the term ‘widow brain?’ If you don’t know what that is, count yourself very lucky.)
Your physical body.
Your hobbies and interests.
Your sense of security.
Your sense of humor.
Your sense of womanhood or manhood.
EVERY. SINGLE. THING. CHANGES.
You are handed a new life that you never asked for and that you don’t particularly want. It is the hardest, most gut-wrenching, horrific, life-altering of things to live with.”
(By Kelley Lynn)
My friend wrote at the bottom, “This is the same way I feel.”
I had no idea the scope of what he was dealing with, what many seem to handle so gracefully every day. I was humbled. And I hated that he had to hand out a paper with someone else’s words to let me know how he felt.
But then I realized that it’s ok to borrow words.
All words are borrowed and used, and then given back in some form. And scripture begs us to borrow God’s words in times like this. When we can’t see past our own experience to make someone else’s a bit brighter. That’s when we most need to borrow words from the Spirit of God:
Come to me, all you who are weary and burdened, and I will give you rest.
The LORD is close to the brokenhearted and saves those who are crushed in spirit.
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
2 Corinthians 4:17
So, in that spirit of understanding, below I am offering my own inadequate words about everyday setbacks and chronic illness. Many have written about this before; most have suffered longer and more intensely than I have. Still, I am offering my words to coexist with words already written. In case someone may need to borrow them. Because when we can borrow words to help us understand each other better, we can support each other better. And then we are well on our way to loving like Jesus did.
Please borrow my words, share them, and most importantly, offer your own words in the comments. Your hard-won insights propel me, and your communicated faith sustains me. And I have a feeling I’m not alone. Someone may need to borrow your words as well.
A recent root canal nearly killed me.
Granted, no one enjoys dental work. And root canals are fabled to be right up there with public speaking when it comes to American’s worst fears. But few people actually die from them.
So, when I say it almost killed me, it might be surprising that I do mean literally. Sort of. It just about dragged me into a depression and left me there. I hadn’t experienced that feeling before, even after four years with chronic heart failure, surgeries and procedures, rounds of bad news, and poor prognoses.
None of that threatened to drown me. But an everyday toothache did.
Like the game of Jenga, where blocks are removed from a stable structure and then placed haphazardly on top, my life’s structure had taken some hits. My firm foundation was losing its footing. I didn’t have physical reserves in energy or stamina or pain tolerance. My emotional reserves were depleted from holding it together on a daily basis, pretending to be normal with this chronic illness. I didn’t have social reserves in friends or family or neighbors that I hadn’t already tapped out for more “serious” times. And life continued at a brisk pace: more blocks were being stacked on top of my leaning tower. When that toothache block got pulled out, the tower swayed in a way I wasn’t sure I could steady.
Many living with chronic illness are already operating in emergency mode most days just to survive. When one more (even what may seem small) burden is added, we crumble. It becomes the straw that breaks our back. And often, an unknowing world scratches its head in disbelief that something so insignificant could cause such an issue.
Malcolm Gladwell calls it the “tipping point,” the point at which a series of small changes or incidents becomes significant enough to cause a larger, more important change.
And that change is not always for the better.
I often visualize life as a sheet of notebook paper, with the margin clearly marked in red, as if a warning. Wide, narrow, or college rule, everyone’s life page has edges for white space, for breathing room, for survival. We write our stories the best we know how, and hope to keep those margins clear. But we all know scribbles and additional words, a doodle or an extra piece of important information, can fill those margins quickly.
Those with chronic illness live edge to edge every day, with no margin for the unexpected. No resilience for the added difficulties. We have no favors left untapped, and we have not been able to make deposits for others to allow ourselves a healthy withdrawal from them. Above all, we have no capacity to keep the “I’m fine” charade going.Those with chronic illness live edge to edge every day, with no margin for the unexpected. No resilience for the added difficulties. We have no favors left untapped...we have no capacity to keep the “I’m fine” charade going.Click To Tweet
You can sit across from us or live right next to us and, at first, we won’t seem much different from you. But as you peel back the layers, you can see that chronic illness (or simply life itself) has taken its toll. We are weary and teetering. We are out of margin; our towers are about to collapse.
So, the next time you see a “normal” person flipping out over a long line at Wal-Mart or ranting on Facebook, remember that they might have just had one critical block removed from their foundation. They may be operating in the narrowing margin. They might very well be walking on the edge of their notebook, just trying to avoid another paper cut.
Because in their case and mine, even this small incident might prove to be more serious than it first appears.