That’s Not Normal

My head is falling off

But I know that I am still alive because of the heartbeat in my head

My rear is falling off too

But I know it is still there because of the lighting in my feet

I was an artist

But my fingers fall off

But it’s okay…

I will put them back

The pieces can’t leave me and will stay to fall off again

I am so many pretty colors

Reds, whites, blues, purples, pinks, and greens…

But none of them are fun

Colors aren’t supposed to hurt, itch, sting, or burn

I have a musical baby bump and butterflies in my stomach

Neither or which are good

There is no actual baby or butterflies, but a stretchy electrical mess playing a horn and drums

It’s hot, it’s cold, is it both? I think so…

Oh, that’s not normal, you say?

Welcome to my day…

Written by: Rita Fae Aulbach-Emira, BA, AS, COC, CPC, CDEI, CDEO, CPB, CPMA, CPPM, CRC, CEDC, CEMC, CGSC, CPCD, CRHC, CMSP, CCA, CMCS, CBCS, CEPFG, QMCI, AAPC APPROVED-INSTRUCTOR, Certified Melanoma Educator

Rita has severe hypermobile Ehlers Danlos Syndrome (hEDS), and co-existing conditions related to EDS including but not limited to Craniocervical Instability (CCI), Mast Cell Activation Syndrome (MCAS), Reynaud’s Syndrome, Gastroparesis, Dysautonomia, Fibromyalgia, Psoriasis, Hidradenitis Suppurativa. The poem above is about these conditions.

You can learn more at The Ehlers-Danlos Society https://www.ehlers-danlos.com/what-is-eds/