Today I spent some time focusing on how to condense my most recent poem to be within admissible guidelines for an artist competition.
The Every Life Foundation hosts an artistry contest for patients and families of those with rare diseases. Applicants can submit visual art, music, poetry, and more.
I was absolutely wowed by the artwork I saw presented in DC in February when at the Rare Artsist Reception. At the end of Rare Disease Week, the Every Life Foundation hosted a reception to conclude all of the advocacy work we did and pay tribute to the artists that were nominated for awards. Every piece was stunning. I was exceptionally impacted by the vast range of ages that participated.
A few months later, while I was finishing up a course with RDLA (Rare Disease Legislative Advocates) with their Rare Disease Learning platform, I was told that Rare Artist was open for submissions again and became really excited. Maybe something I’ve done could help promote the advocacy work we need more eyes on in DC?
I submitted one painting- in which I titled May She Have Peace (the main photo you’ll see on my last post) which is an attempt at a self portrait of myself mid-treatment. I’m currently a participant in a clinical trial for a group of researchers that are hoping to find the first FDA approved treatment for symptom management in patients like me.
I’ve learned a lot about the vagus nerve and the autonomic nervous system. It’s interesting to see how much overlaps in patients with Ehlers – Danlos Syndrome. If you think a deep dive into all that I’m learning in my trial would be an interesting post, let me know in the comments below, I can definitely share my thoughts and experience as a patient in this study.
The Rare Artist competition allows community members to submit more than one submission (two max) but only one can be finalist. I decided to submit my artwork and poem , but submit my artwork as a separate submission and an accompanying illustration for my poem. I think they fit together really nicely.
I had to condense my poem down to 300 words or less, so I decided to submit an adapted excerpt. I think it still holds true to my original piece (but I still love the original more).
Here’s the adapted excerpt. Let me know if you like the original or condensed version more!
While I Wait for Relief by Lauren Hand (excerpt)
While I wait for relief, I create.
To give it a name.
Doctors say:
“Lose some weight.”
“Wait! you’ve lost a lot… are you okay?”
So I give them my tissue—
to rule out every possible issue.
So many tests.
The nurse leans in:
“Do you have someone to drive you home?
You really shouldn’t have done this all
alone.”
As if I chose
to give away 32 tubes just today.
“Your labs look clear.
Have you followed up with psych?
Maybe give that a try.
Pain like this is often… in the mind.”
But the next day—
ER – I’m in decline.
Finally, someone believes what I’ve said.
now that I’m here, in this hospital bed.
While I wait for relief–
There’s something new.
“There are no guaranteesbut researchers are learning
a lot about you.”
While I wait for reliefI comply.
I plug in.
-deep breathEven if I don’t find healingthis’ll help the next.
While I wait for relief, I show up.
I speak.
I create.
I ache.
Maybe I won’t be the one who’s saved,
but the one who comes next, her path will
be paved.
May she live long and pain-free.
…laugh without worry; breathe deeply and
without fear.
May she never ask,
“Please, don’t make me laugh, dear.”
May she never look at old photos
and miss the flair
she once had for life—
before “flare” meant pain.
Before “flare” became life.
May she never worry if she’s believed.
May she know peace.
These are my prayers—
While I wait for relief.
thank you 🙏
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