When things in her life felt out of control, Ellen Samuels turned to poetry. This wasn’t necessarily abnormal for Ellen. As an English professor at the University of Wisconsin-Madison, Ellen has long been drawn to the power of words, to the way that language can capture emotions and connect people across boundaries. But Ellen found a new way to embrace poetry in 2014 after she was diagnosed with an arterial dissection, a complication related to her Ehlers-Danlos syndrome (EDS).
Not soothed by the music provided during her MRIs, Ellen began crafting poems in her head. The haiku – with its 5-7-5 syllabic layout – was the easiest to remember. After some time, Ellen began putting together a book of these haikus: “Hypermobilities.” To get a sneak peak at a few of the haikus in the book, and to hear more about Ellen’s story, take a look at this source article from Wisconsin Public Radio.
What is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos syndrome (EDS) refers to a group of inherited connective tissue disorders, caused by inherited defects in collagen and related proteins. For example, EDS may be vascular (vEDS), classic (cEDS), hypermobile (hEDS), or a number of other forms. To learn about each separate EDS subtype, take a look at this helpful guide from the Ehlers-Danlos Foundation.
While symptoms vary based on subtype, some potential symptoms or characteristics could include:
- Joint hypermobility and joint deformities
- Muscle, nerve, and joint pain
- Pelvic floor weakness
- Easy bruising
- Soft, velvety skin which tears easily and heals poorly
- Severe scarring
- Sudden vessel rupture or internal bleeding
- Stroke or heart valve disease
Publishing “Hypermobilities”
After her MRIs ended, and as she moved on to pursue other treatment options, Ellen kept writing these haikus in her head. For two years, she wrote and crafted. She’d edit the haikus at home, saving them on her computer or sharing one or two on social media. Then it hit her – by creating a book, she could make a change. She could connect with others with disabilities or rare diseases and, perhaps more importantly, empower them to use their voices.
“How are you?” A question that, on the surface, may seem simple. Yet Ellen explains that for those with rare diseases or chronic illnesses, this question isn’t always easy to answer. People don’t want to lie and say that everything is fine and good, but they also don’t want pity.
This, says Ellen, is why writing – or other creative avenues like drawing, painting, or podcasting – can be helpful. It provides an avenue for connection, an avenue for self-expression, and an avenue for education. In the end, she just hopes that her book shows others that they are not alone in her journey.
To preorder “Hypermobilities” by Ellen Samuels, head here.
