Erythromelalgia, Pain, and Enoughness (Plus CIRS!)
One thing my double duo of erythromelalgia (EM) and chronic inflammatory response syndrome (CIRS) has given me is x-ray vision into the suffering of others. I’ve always been a compassionate creature. In my 20s as a hospice nurse, I didn’t shy away from the suffering of others, but there is a difference between bearing witness to another’s pain and suffering yourself.
This week my 9th grader niece broke her hand in a softball snafu. Even at a young age, she has been enormously kind to me as I struggled to walk. She went as far as to sit down in the middle of the road in her very own neighborhood with me mid-flare. She chose being with me despite what the neighborhood kids may think. What may not have been apparent to me before losing my health quickly came into focus as soon as I heard of her accident. I wrote it in a letter to her-
“Broken hands suck.” (Feel free to insert EM or CIRS into this sentence yourself!)
Next I wrote,
“Important- Be gentle with yourself.
To-do- Don’t push yourself too hard. Your body is using lots of energy to heal.
Top priority- Snuggle your furry best friend. It’ll help you heal up even faster!
Important- Talk back to the voice in your head if it says not-so-nice things. You are enough. You do enough. It’s okay to take a break to heal.
To-do- Allow other people to give… to take care of you.
Top priority- Speak up when you need help.
Important- Remember that nobody escapes being human. At some point we will all need something we see as unsightly- a cast, crutches, scooter, or worse. Try your best not to be embarrassed by this and remember kindness to others when their humanness leaks out as uncontrollably as your just has.
To-do- Wear super comfy clothes. I lived in a red robe for 5 years. Find your softest t-shirt!
Top priority- Know it is normal if you feel disappointed (or anything else)! This was not in your plans, and you didn’t ask for it.”
And then I wrote in large letters surrounded by arrows for emphasis, “BE KIND TO YOURSELF… AS KIND AND PATIENT AS YOU’VE BEEN WITH ME WHEN I’VE BEEN HURTING.”
And this is the work, isn’t it? Committing repeatedly to caring for ourselves. And the hardest part, caring for ourselves in the gentle and patient way we have so often cared for others.
I leave you with the blessing of my dear friend and colleague Christy Bonner. When I am wise enough to read aloud her words, it leaves me feeling as if I was living in a stuffy room and a window has been open.
“I am enough.
I care enough.
I do enough.
My loved ones are enough.
I have enough.
I am safe enough.
This moment is enough.
My vulnerability is enough.
My presence is enough.”
We are simultaneously wounded and yet somehow more than enough.
I closed my note to Madison with the following, “Our hands may be breakable but our spirits not so much.” This is not to say that our spirits cannot feel weighed down or even irretrievably broken at times by our pain but instead a reminder that something buried deep inside is so much larger than our suffering.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
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