It’s a sunny day here, but the brightness surrounding me cannot seem to penetrate my heart. My gloominess comes from the several nights of poor sleep that have accompanied my start of oral antibiotics and the abdominal and back pain that have been near-constant companions these past few days. Pain wears me out and getting less sleep than I need tends to shade my optimism.
Days of illness, even illnesses that are mild in the grand scheme of things, make my world close in. I haven’t left the house much in that last week. My normal routine has been disrupted by the presence of this infection. It’s hard not to focus on what’s not getting done and what’s not working correctly in my body.
Recently, I read a blog posted by the Cystic Fibrosis Foundation, written by a woman named Katharine Scrivener. One thing Katharine said resonated with me. She said, “The older I get, the harder it is not to become my disease…[i]t’s a daily struggle to live my life outside of my disease–to not let it seep into each moment of my day.”
I couldn’t agree more. At one time, CF seemed to be just a footnote in my life. Now, more often than not, it seems to be the headline, especially on days like today. I know I am much more than my disease, but the struggles of CF have seeped into so many moments of my day. There are times when I just want to forget all of it–the medications, the breathing treatments, the physical therapy, the health-preserving exercise, the worries, the uncertainties, the limitations, the pain. I want to cast it all aside and just live free. I want to be “me” untethered.
There was a time in my life where I had to make a conscious effort to accept CF as part of who I was since my main struggles started after I became an adult. I have done that, but now I feel it has become too much of me. That it is beginning to color too many aspects of my life. To quote Katharine, that it is “chipping away at who I am.” It occupies too much space in my mind.
This post is partly a challenge to myself–a challenge to keep cystic fibrosis in its place. It’s something I’m still learning how to do–how to keep up with the demands of living with this disease, how to weather the illnesses, how to accept the limitations and push past the disappointments without becoming the disease. How to live outside of CF even while dealing with its implications.
Today I read Isaiah 43. The first three verses are as follows:
But now, this is what the Lord says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the Lord your God,
the Holy One of Israel, your Savior.”
These verses spoke to me today about my identity. Who am I? I am God’s child. He has summoned me by name and I belong to Him. It reminds me that when I pass through the waters, the rivers, the fires of this life and this disease, God will be with me, and I, the real “me,” will not be swept away. When I shift my gaze away from my circumstances and onto God, CF goes back to its rightful place. This disease is only one of the particulars of my life. It has in many ways shaped me, but it is not my identity.
Who I am? I’m Betsy–God’s child, a wife, a mother, a daughter, a friend, and a teacher. I am a joyful, loving, hopeful woman. And my CF? It’s there, but it’s just a footnote.