It’s not the path I would have chosen for my life. It’s definitely not the path I want to be walking right now.
Today, I wanted one thing from this specialist – for her to take me seriously. For her to schedule me for whatever tests would be necessary to put a name to this beast that I fight every day. Instead, I felt dismissed, like I was just another number.
One of the many frustrating things about muddling through the health care industry is that we as patients have to be such relentless advocates for ourselves. With normal illnesses like the flu or a cold, someone might simply say, “I’ll go see the doctor.” The doctor gives him medicine, and he gets better. Those of us with more obscure, mysterious symptoms that persist and debilitate – most often it feels like we spend all our time and energy just trying to get someone to understand the depth of struggle that we deal with constantly, somehow without coming across as a victim or a hypochondriac. No, I don’t have pain because I’m stressed. I’m stressed because I have pain. There’s a big difference.
It can feel so often like we are stuck between a rock and a hard place, unable to move. It seems like we are stripped of our ability to choose how we want to live our lives. It’s easy to be overwhelmed by all the things we cannot do, all the trips we cannot take, and all the bills we cannot pay. It’s easy to lose sight of who we are.
I don’t want to be that person. I don’t want to be a victim of my illness or of the medical industry. I have never wanted that. However, in the past the decision to maintain my autonomy meant ditching health care all together. It meant dropping my meds and living in ignorance of my limitations. And it kind of worked for a while. However, lying to yourself never works for long.
Amy Carmichael wrote in a poem:
“Before the winds that blow do cease,
Teach me to dwell within Thy calm:
Before the pain has passed in peace,
Give me, my God, to sing a psalm.
Let me not lose the chance to prove
The fullness of enabling love.
O Love of God, do this for me:
Maintain a constant victory.”
What does it mean to live in victory in the middle of the storm, in the vast unknown, or in the midst of being misunderstood? What does it look like to have a joy that no one or no thing can take away? How can one have peace in the time in-between, when it seems like the waiting is excruciating?
This is what I am learning.
And I can say, for me right now it means this:
-That I do not allow the things that I can’t do to overshadow all that I can do
-That I do not view my illness as something that makes me incomplete as a person; but that I would see it for what it is – a challenge that I have been given
-That I would embrace this time as a precious gift – one that causes me to look deep into what it means to take care of my body and learning how to take care of others
-That I would not see this as an interruption to ministry, but rather a redirection in ministry. How many people are going through the same things? How can I be an encouragement and an inspiration to them?
-That this would cause a deepening of my understanding of the love and comfort of my Heavenly Father, who understands when no one else does and walks with me where no one else can
And I will always say: I will praise Him even now!
I love this quote by Ann Voskamp:
“Even if today didn’t go as planned, Lord
and if it’s not at all what we hoped,
and if “we’re” not yet quite what we hoped,
and if life’s not unfolding to our Plan A
and if it’s not even close to Plan B
and if the diagnosis is not great
and if the forecast is not good
and if not…and if not…and if not…
“You still are.” You still are Good and You still are God.
And we will be the people who will still…
The people who will still rest in and sing it into the dark:
“and if not…He is still Good. He is still God…so we can still and be and be at rest.”