I think chronic illness can be a lot like waiting for the other shoe to drop. We are constantly on the watch for the next tidal wave as we sit waiting in crystal clear waters. There is an anxiety present. We know a great white is lurking below. And as much as this near decade has taught me, there will never be a tonic that takes that all away.
But a few things come close.
In the past, I’ve alluded to TSW (and general chronic illness) as a relentless barrage of natural disasters. You have this lovely home, nothing fancy, but it’s yours. A few things are falling apart here and there, but manageable. However, outside of hurricane season, the eye of a category 5 comes brushing through your town — yet it only hits your home. You lose everything, and people flock to help. They send money, food, necessities, and visit to see where their talents can be utilized.
Once the skies look calm and you’ve employed a few people to set your four walls, a roof, and some windows, you think things are looking up. But then, a torrential metoer shower of hail hits. Your windows are busted out. You have cracks in your new tile. There is this welling in your chest of fear, but you spend more money trying to fix the damage. People send you encouraging words, not the same support as before.
Then, as soon as you fix half of the windows, a stampede of animals from Noah’s ark rushes through your home, busting through walls and tearing apart half of your foundation. If you didn’t see it happen with your own two eyes, you’d never have believed it. Others don’t — not even your contractors. You’re forced to spend more and more money fixing another problem while less and less assistance is provided to you. This is your new normal, and others treat it as such. You’re too busy trying to stay afloat that you miss out on birthdays, holidays, game nights, and even work.
It can feel isolating. It can feel lonely.
Just writing that was exhausting.
Your soul, the very core of you, must stay vigilant. Surprises don’t cause joy, but apprehension. What works best is routine, a schedule — something consistent to ease the trepidation of yesterday, today, and tomorrow.
This works not only with our daily calendar, but with love.
I’ve experienced many types of unstable love. Love with wandering eyes; love that enjoys the highs but abandons me in the lows. Love that wasn’t love at all but a wolf in sheep’s clothing.
I’ve also experienced fleeting love. Love that is etched into someone’s pinky scar. Love that resuscitated me and gave me courage to jump towards a dream I’d let lie for far too long.
As fueling as fleeting love is, it doesn’t last. They are just short-lived lessons to carry on. But many of us with chronic illness need something long term — something more terminal than our illness.
Lately, I’ve found my hands holding another’s. Theirs are always warm and tender. I’ve never had to reach for them — they extend to reach mine. They have brushed away smudged mascara and they have carried my heavy bags.
I’ve also learned that they were built to save lives. They’ve negotiated burning buildings and curtailed immense loss. They’ve known how to be the calm in someone’s chaos.
I’ve also learned that they can build a home. They aren’t afraid of labor or finding the right tools for the job. They offer their service to others, meticulous in their craft. Nothing is too much of a challenge, only a force of perspective.
These beautiful hands that have lived so many lives are evidence of a steady love. They send me texts every morning, cook me food, bring me tea, and hold me whenever I am near. They show me what type of love I deserve. That they will run toward the fire. That they are willing to accept any blueprint.
All of this makes me feel safe…
… like I can ride the next tidal wave …
… like I can swim with the sharks…
… like I can dance inside a hurricane.
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