Here is what I want us to know in the depths of our souls.
We are not terrible moms, or terrible wives/daughters/friends/sisters/cousins/granddaughters/employees/anythings because we are dealing with invisible illness.
The terrible thing is the illness.
The terrible thing is not – emphatically not – you.
Or me.
We hit quicksand on our journey, you and I.
And we sank.
And came up for a breath, and struggled, and flailed about, and sank again.
And over and over we have fought to keep breathing and to get our feet back on solid ground.
But we are fighting, and we are struggling: we are not giving in or giving up.
We are brave, lionhearted women who, at this point in our lives, are simply up against something that is unbelievably strong.
We will make it out alive,
wobbling on weak legs,
dirty and broken,
exhausted beyond belief,
but standing nonetheless.
And then we will walk on.
We will walk on to discover that the road hasn’t been paved and gravel is slick when it rains and potholes fill deep with water.
And we will fall and be soaked to the bone, but then we will stand up.
We will walk on to learn that the wind is a lot colder when we’re moving than when we were stuck in the ground
and we will wonder if we shouldn’t have stayed where we were.
And we will hunch over and shiver for awhile, but then we will stand up.
We will walk on to find that the darkness is darker than we remember.
And we will have nightmares and be afraid of monsters, but then we will stand up.
We will stand up and we will walk on.
We will tell our stories with words and songs, pictures and clay, tears and laughter.
We will survive, and not only that,
we will redeem our time.
It will not be wasted or squandered, for we will have been moving all the while.
And one day we will awake to discover that we do not fear any longer,
for we will be able to accept the grace we so freely bestow upon others.
Now we are weary, you and I, weary of the weariness, the walking and the fight and the journey, the endless ups and downs, the battle between hope and despair.
But soon – soon, dear hearts! – every valley shall be lifted up, and every mountain and hill be made low; the uneven ground shall become level, and the rough places a plain.
May we continue to travel together – tears, broken bones,aching muscles, and all – toward the belief that such a day is, indeed, coming quickly.
I initially wrote part of this piece as part of a (very) long email to a friend I have not met yet, discussing my journey of recovery from postpartum mood disorders. Then this afternoon another friend publicly shared her story of being in the midst of years battling chronic fatigue syndrome. Living well with an invisible illness entails a great deal of bravery and I am inspired every day by those who do it even as I need to be reminded that I, myself, am living with courage. So this edited and expanded post is specifically for the many women I know who are in the midst of invisible illnesses, but also for anyone who has found themselves in a place that they do not want to be.
Special thanks to Deb Talan & Steve Tannen for writing this song.