Floppy: Tales of a Genetic Freak of Nature at the End of the World

by Alyssa Graybeal

When ten-year-old Alyssa is diagnosed with the rare genetic connective tissue disorder Ehlers-Danlos syndrome, she vows not to let it stop her. Unfortunately, her efforts to avoid being "too sensitive" lead her to neglect not only her health but other aspects of her life as well. Twenty years later, she’s finally forced to confront the reality of her condition head on. When she finds herself tangled in an unwieldy combination of chronic pain, a library job for which she is particularly ill-suited, and her wife’s mystifying health problems, her body starts to unravel in ways she can no longer ignore. If pushing through is not the answer, what does homecoming to her floppy body even look like?

Genres: Memoir, Disability, Nonfiction, Biography, Biography Memoir, Science, Queer

280 pages, Paperback

First published May 30, 2023

Reviews

[Alyssa Graybeal · Rating 5 out of 5]

It’s pretty disjointed, but it all holds together somehow. Would write this book again.

[Rigel · Rating 5 out of 5]

"My brain is a bulldozer and my body is a delicate flower, and I have to keep the machinery of my brain from crushing the petals."

As a LGBT+ person with hEDS (and friends) whose parents dismissed almost everything because I was “fine,” I feel like I have been waiting for this memoir my entire life. I saw so much of myself in Alyssa it was almost scary. I’m even in the process of getting my Master’s in Library and Information studies!

I often push myself too far because I could go further when I was younger or because I feel like I have to or because I’m trying to outrun my problems or because my thoughts are galavanting around faster than I can keep up with. This book reminded me to be kind to myself and to my body.

Highly recommend.

[angie · Rating 5 out of 5]

I laughed while I cried. Raw and beautiful!

[Jacqueline Parry]

i don't think i can give a star rating to a something that felt more like reading my journal, so just know it meant a lot to me!

[Sarah · Rating 5 out of 5]

As someone with suspected Ehlers- Danlos syndrome, I find myself constantly looking for resources and stories from those who have it, because our stories are shared so little, and information (let alone a diagnosis) is so hard to find. That's why memoirs like this one, one of the first one its kind, are such gems! Readers meet Alyssa, diagnosed with the rare connective tissue disorder at the age of ten. But what should be a journey of knowledge and healing is instead of journey many of us with chronic illness can relate to: lack of information, resources, or acceptance. Being told we're too sensitive leads to a lack of medical care that could lead instead to a life of managed symptoms and understanding. As the author soon realizes, "I was beginning to realize that the only person who had a reasonable chance of making perfect sense of my experiences was me" (215). Thus follows a journey of discovery, self-advocacy, and self acceptance that I could not stop reading and constantly found myself relating to.

I also really connected to when she came to the realization of actually accepting her limitations and chronic illness, talking about symptom management and that she "...could have wisdom without the self-blame" (237). Further, her "...strength would come from listening to my physical limitations, the patterns threaded throughout my own body, as if my life depended on it. Which it did. There's no such thing as being too sensitive (245)". This section really hit me, as I'm sure it will for anyone, especially female-identifying, whose doctor's appointments are a constant routine of gaslighting by medical professionals. The author touches on this later, how resilience is required for those of us with chronic conditions, but "...what we really need are systems that don't require us to be resilient at all" (253). I couldn't have said it better myself.

I loved how the author touched on how the COVID-19 pandemic brought about a rare opportunity where "...those that had been previously disabled by lack of access- became able-bodied" (254) and how vital it is that the accommodations brought about by the pandemic continue for those that need it and depend on it. Not to mention, how research and acceptance of long COVID is an opportunity for those of us with chronic illnesses to finally be listened to, because "...if long COVID is real, then maybe what patients say about other chronic conditions is true too" (254). I think the author says it perfectly when she states:
"So the hope and opportunity- for people who had chronic illnesses before this pandemic, for people who survived COVID-19 only to be left with long COVID, and for people who are currently healthy but will someday become sick or disabled (read: everyone)- is that the research and knowledge about long COVID will be bidirectional with all of the these other chronic conditions. Perhaps even general practitioners will learn to tell one from the others. To do so, they will have to see the reality of systemic illnesses, and we can all hope that universal acceptance and better treatment will come out of that capacity" (254).

Overall, this memoir was not only beautifully written and eye opening for anyone not living with chronic illness, it was a warm embrace of acceptance and acknowledgement for those of us with chronic illness. Both are important; representation and advocacy can change so much, especially for lesser known illnesses like Ehlers-Danlos syndrome, a hard to diagnose and lesser-known condition even in the medical community. I'm so glad I found this memoir, and can't recommend it enough!

[Joanne Fate · Rating 3 out of 5]

I'm sure it can be trying to write and publish a book as personal as this. Alyssa Graybeal has a medical condition called Ehlers-Danlos Syndrome. People with EDS have a variety of loose joints and often have other symptoms as well. There are multiple types and some are more serious than others. I give her respect for putting this book out there, but the book needs some serious restructuring and editing. She jumps around in time like a novel when a straightforward timeline would have served her better. It is 3 stars with an added half star for the bravery to put this out there. I’m not sure how much appeal this has for people who don’t have or don’t know anyone with EDS. I know this is a harsh review, but the intent and the final product don’t match. I’m glad I read it anyway as I do have people in my life with EDS.

[lea · Rating 5 out of 5]

reaffirmed my belief that all eds-havers are just weird queer people. generational gap and different eds types aside, so much of my own experience is reflected in this book. made me so angry and so sad, but also reminded me how important disabled voices are, especially messy, emotional, honest, weird, queer disabled voices.

[abby pilk · Rating 3 out of 5]

a very all over the place book but it does come together at the end. read for a class assignment and i will say it was a good choice

[Kate Belt · Rating 5 out of 5]

Graybeal was off-handedly diagnosed with Ehlers-Danlos Syndrome, at 10 years old. Her parents never followed up on recommendations to see a geneticist, have bloodwork to determine the type, to receive physical therapy, medical treatment, or preventive care related to her condition. She spent decades living with it, not getting the preventive care and therapies that could have helped moderate her symptoms, pain, and reduced episodes like falling. It was interesting to see what the disease was like from inside the author’s head. I learned a little about the relationship between genetics and autoimmunity. The book has a fair amount amount of biology and anatomy, but not so complex I couldn’t follow it. The EDS doesn’t define her. She has a fascinating mind, such as applying knowledge of fractals to knitting patterns. For years she was committed to living a “home made life,” using a wood stove, growing and preserving food, spinning wool, making dyes from plants, etc. Side note: I didn’t set out to read a Pride Disability book this month, but it’s a good one! Graybeal talks about dating and her marriage, but being gay is not at the forefront of the story. Her writing and ability to tell a story are excellent. I engaged quickly with her.

[Kathy · Rating 3 out of 5]

I received a free digital ARC in exchange for an honest review.

This is a difficult book to review as I didn't solely read it as a memoir; I share many diagnoses with Graybeal so my lens was a bit different on this one. That said, I didn't care for the way the chapters alternated between her childhood and adulthood. Adult chapters often referenced things she wouldn't fully explain until a later childhood chapter, and it left me feeling confused not only to the timeline of events but to the progression and changes in her health over time. I also think early chapters focused so much on tripping and twisted ankles that readers may not grasp the gravity of the diagnoses. Events and diagnoses finally and fully coalesce in the final chapters, though, and I did find this portion of the book satisfying.

[Amanda H · Rating 3 out of 5]

As someone recently diagnosed with hEDS, I guess I had hoped to see...more... of the EDS aspect of her story. It wasn't until page 229 when she really gets into it more. It felt very whiplash-y with the chapters. The timeline was muddied, essentially. It would have made more sense going chronologically.
idk. It was good... but I wouldn't read it again.

[Emily · Rating 2 out of 5]

Reading challenge category - 2024 Hoffbensen RC: Related to a rare disease or disorder (EDS/POTS/MCAS)

UGHHHHH. I wanted this to be so much better than what it was. Seeing this book on a shelf for Disability Pride Month made me feel so seen as someone living with EDS/POTS/MCAS (and also having a kitty that likes to lay on me). Promising an insightful exploration of living with Ehlers-Danlos Syndrome, this book unfortunately comes across as pretentious and lacking the authenticity I had hoped for. I was very close to giving this book 1 star solely because the author made the HORRENDOUS DECISION TO USE THE "R" WORD IN THIS BOOK. (I don't care if you were describing what you were thinking in the second grade - it's not necessary). And it felt inappropriate and jarring in a memoir that seeks to shed light on the challenges of living with a disability. It's crucial to maintain sensitivity and awareness, and this choice of language completely undermines that goal. (Also, please don't be the person that says "it's okay that I smoke because you have to die of something" -- especially when your sister died of cancer). Also, the bebopping of timelines made it difficult to follow along. End rant.

[Samia Abbasi · Rating 5 out of 5]

I picked this up from the Red Hen Press booth at the Bay Area Book Festival, not knowing it would become one of my favorite memoirs in my collection. Alyssa Graybeal’s writing is calming yet striking, thoughtful and immersive. I loved the braiding of her adult and adolescent life between each chapter! I am going through the process of getting to know my chronic Raynaud’s Syndrome condition, and this book made me feel hopeful and less alone.✨

[Jae McKern · Rating 3 out of 5]

As a chronically ill person this book meant a lot to me. Getting to see another person going through medical gaslighting and trauma is something I don’t often see so this was special in that way. I didn’t love the repetitiveness and writing style or how disjointed it was but I did really appreciate the representation!

[liss · Rating 3 out of 5]

I wanted more EDS talk and less memoir, which she started to get into at the end I guess but I wanted more lol.

[Rishi · Rating 4 out of 5]

It’s rare to be able to hear stories so personal from someone who experiences something quite so rare. In medicine, much of the trade deals with the common diagnoses and treatments. Rarities can be seen as affronts or the ego of those practicing.

Floppy is a beautifully written memoir by Alyssa Graybeal in Astoria that details what it’s like to have a disorder so rare that its diagnosis isn’t respected. Her insights into life, the rich tapestry and descriptions of the PNW are just an added bonus. The prose is light, fun, and insightful. Graybeal is really quite funny.

I found the book driving through Astoria, and I’m glad I did. Both Graybeal voice and story are deeply important, and highlight the importance of spotting zebras amongst the horses.

[Linden · Rating 2 out of 5]

Alyssa was diagnosed at age 10 with Ehlers-Danlos Syndrome, a genetic connective tissue disorder. She tells us about her life, but I didn't like that her anecdotes jumped from things which happened to her as an adult, a child, a college student, and a teen exchange student in France with no continuity. The ending and the afterword where she discusses her disorder were the most interesting part of the book for me. Edelweiss suggested I read this book for Disability Awareness Month, offering an ARC for review.

[Rebecca Kuder · Rating 5 out of 5]

This book is gorgeously written, lyrical, and thoughtful. In particular I loved how Graybeal writes about nature and its effect on the human body, as a poet-scientist or scientist-poet…so much beautiful embodied writing in this book. And too, I love how the artist-narrator uses fiber art as thread and metaphor (sorry/not sorry) through the narrative.

As an able-bodied person, I am grateful to access the narrator’s lived experience of Ehlers-Danlos Syndrome (EDS), which is shared in these pages with such openness and honesty. This book helps me better understand the strange fickleness of anatomy; the full range of what it is to be human in a body; how our bodies shape who we are/become; and how we navigate survival in the world.

p. 119: “The Atlantic has a different personality than the Pacific. Instead of rainy sou’westers that flood roads, Halifax has frigid nor’easters that bury them in snow and blow away cars. Apparently, living near the ocean didn’t necessarily mean the weather would be temperate. Not an intuitive fact to my West Coast brain. And while the Pacific is on the leading-edge of the continent, keeping many of its secrets fathoms deep, the Atlantic slopes gently into the abyss and so coughs up more decay in its tides. It stinks more, with its deep piles of kelp, rockweed, and knotted wrack, more putrid life close to the surface. It also coughs up more human detritus from the populations along its coastlines, washed and worn by the churn of the ocean. On the Oregon Coast, I hunted sand dollars; in Nova Scotia, sea glass. Sea glass tumbles in the ocean for years or decades or centuries until its edges wear down and it takes on a frosty opaqueness. I collected all the colors and tossed them into a mason jar on the kitchen window where they fractured the light.”

p. 233: “According to a person living and thriving with EDS, the answer was to do less, not more. It was a valid excuse?
In the room full of knitters with feet elevated on second chairs, no on eels seems to freeze in the crystallized clarity of her statement. Nobody in the nap section peeled around the cubicle dividers in wide-eyed awe. In slow motion, I picked up my needles to knit one loop, then another. Her words had led me to the edge of an invisible chasm, the vast difference between working within physical limitations and pretending you can manage them away, no matter their severity. The idea of accepting the reality of EDS as a chronic illness, with all of its design constraints, rushed through my veins like the buoyant relief of drinking a liter of electrolyte water, increased my blood volume and lifting my brain fog.
Her statement resonated with kindness. It reclaimed reality for what it was. I just had to own my EDS, and all of its comorbidities, as something to structure my life around.”

p. 252: “The disabled and chronically ill have a resilience advantage in that we have always had to develop self-awareness and creativity. When systems are not built for us, creative problem solving becomes necessary for staying alive. No one is going to figure it out for us. We must be continually aware of our essential physical needs, then build worlds around us that meet those needs. That adaptability we develop for survival builds our resilience from day one. But also, the creativity we develop for survival helps us to navigate our unique paths toward meaning in our lives. And it’s that meaning, whether a sense of purpose or alignment with something that we love, that grows a resilience so strong it can handle the weight of anything.
We need to focus on the big things, not the little things.
So being told to build resilience by focusing on the little things feels like wearing a wrist brace to keep my ankle from dislocating. It won’t actually support me when I need it. Sometimes I even feel like it’s a ploy to keep me small. Just because a person lives with a chronic illness or disability doesn’t mean they have to live a small life in which their only possible joy is watching a zippy sunset. I don’t have access to joy in the little things unless I’m already channeling my energy into something larger than myself. Once we align with self-defined meaning, the whole world becomes precious, even an idiosyncratic body with an absurd number of health challenges. We necessarily become more resilient; joy and gratitude flow naturally. When we know what we’re living for, the motivation to bounce back is built into our very fibers.”

[Marathon County Public Library · Rating 5 out of 5]

As someone with suspected Ehlers-Danlos syndrome, I find myself constantly looking for resources and stories from those who have it, because our stories are shared so little, and information (let alone a diagnosis) is so hard to get. That's why memoirs like this one, one of the first of its kind, are such gems! Readers meet Alyssa, diagnosed with this rare connective tissue disorder at the age of ten. But what should be a journey of knowledge and healing is instead of journey many of us with chronic illness can relate to: lack of information, resources, and acceptance. Being told we're too sensitive leads to a lack of the medical care that could’ve helped us move toward a life of managed symptoms and understanding. As the author notes, "I was beginning to realize that the only person who had a reasonable chance of making perfect sense of my experiences was me" (215). Thus follows a journey of discovery, self-advocacy, and self-acceptance that I could not stop reading and constantly found myself relating to.

I really connected to when Alyssa came to the realization of actually accepting her limitations and chronic illness, talking about symptom management. She "...could have wisdom without the self-blame" (237). Further, her "...strength would come from listening to my physical limitations, the patterns threaded throughout my own body, as if my life depended on it. Which it did. There's no such thing as being too sensitive (245)". This section really hit me, as I'm sure it will for anyone, especially female-identifying, who’s ever experienced gaslighting from medical professionals. The author touches on this later, how resilience is required for those of us with chronic conditions, but "...what we really need are systems that don't require us to be resilient at all" (253). I couldn't have said it better myself.

I also loved how the author touched on how the COVID-19 pandemic brought about a rare opportunity where "...those that had been previously disabled by lack of access- became able-bodied" (254) and how vital it is that the accommodations brought about by the pandemic continue for those who need them. Not to mention, how research and acceptance of long COVID is an opportunity for those of us with chronic illnesses to finally be listened to, because "...if long COVID is real, then maybe what patients say about other chronic conditions is true too" (254). I think the author says it perfectly when she states:

“So the hope and opportunity – for people who had chronic illnesses before this pandemic, for people who survived COVID-19 only to be left with long COVID, and for people who are currently healthy but will someday become sick or disabled (read: everyone) – is that the research and knowledge about long COVID will be bidirectional with all of the these other chronic conditions. Perhaps even general practitioners will learn to tell one from the others. To do so, they will have to see the reality of systemic illnesses, and we can all hope that universal acceptance and better treatment will come out of that capacity" (254).

Overall, this memoir is not only beautifully written and eye-opening for anyone not living with chronic illness, it is a warm embrace of acceptance and acknowledgement for those of us with chronic illness. Both are important; representation and advocacy can change so much, especially for lesser-known illnesses like Ehlers-Danlos syndrome. I'm so glad I found this memoir, and can't recommend it enough!

Sarah M. | Marathon County Public Library
See this book in our catalog.

[Suzanne Mcdonough · Rating 5 out of 5]

Most children learn to count on their fingers or toes.
Alyssa Graybeal learned to count on her stitches—her small body carefully sutured together after bloody injuries from repeated falls.

Like me, Graybeal has a rare genetic condition called Ehlers-Danlos Syndrome or EDS. “Floppy: Tales of a Genetic Freak of Nature at the End of the World” is her account of her journey with EDS.

EDS comprises a group of at least 13 different disorders. They affect connective tissues that give support, structure, and protection to many parts of the body. People with EDS often have joint hypermobility as well as skin and other tissue fragility. This results in lifelong chronic pain and fatigue.

The road to diagnosis is often a long and rocky one for people with EDS. Many experience “medical gaslighting” and are dismissed as being hypersensitive or hypochondriacs.

Graybeal, on the other hand, was diagnosed with EDS at a young age. She had joint issues (she was “floppy”) that frequently caused her to stumble and fall giving her severe bruises and gaping wounds. Yet, other than emergency first aid, she was not given proper treatment or support resulting in an early life of much injury, frustration, and damage that would only be fully realized later in life.

However, Graybeal’s is not only a story of struggle with chronic illness. It is also a coming-of -age story—the story of a girl coming to terms with her awkward, quirky, queer self and her relationships with family, peers, and society.

No illness happens in a vacuum. Graybeal, amid her EDS, also experienced parental divorce, death of a sibling, cross-continent moves, and her own divorce—all as her health deteriorated. She floundered to find her way until discovering the EDS community and new ways to conceptualize her health and existence.

Graybeal is a strong and talented writer. She is comfortable both with lyrically descriptive phrases such as those that she uses to describe Canadian landscapes and with evocative depictions of the societally normative people she encounters on her journey.

However, those who are not familiar with EDS and chronic illness may find it hard to spot the EDS patterns in the early parts of the book as Graybeal writes of many other aspects of her life—including her fear of an upcoming apocalyptic event (hence part of the title “…at the End of the World.”) Her lack of focus on her pain and disability is familiar to many of us as fellow EDS zebras. This could be taken as a reflection of the denial and dissociation that we experience trying to accept the harsh realities of chronic conditions as we attempt to lead “normal” lives—if we pretend we don’t feel the pain, then it isn’t real. Graybeal had many other challenges to focus on in her early adult life and the specter of EDS is present but takes a backseat to them for a while.

Despite this potential confusion for the non-EDS initiated, “Floppy” is a poignant, highly compelling memoir. I loved reading it. I saw myself in Graybeal and her struggles many times over. I laughed in empathy with her awkward moments (injuring herself in bed; trying to construct a portable bathtub) and cried with her in her isolation and pain (was it actually time to call an ambulance?).

“Floppy” is a personal triumph for Graybeal as well as for all of us who struggle with EDS and other chronic illnesses. She is making our presence, our struggles, and our strengths known—floppy joints and all.

[Elizabeth Sanders · Rating 4 out of 5]

This memoir doesn’t flow as organically as others I’ve read, but I think this a stylistic decision that works in Graybeal’s case. Her work is filled with imagery related to breaking or non-conforming to traditional patterns, whether biologically with her Ehlers-Danlos syndrome diagnosis, artistically with her crochet patterns, occupationally with her numerous gigs and DIY projects, or geographically with moving between two childhood homes, student exchange in France, and hopping around Canada. Why, then, would her life story be presented without the same variation in rhythm?

Graybeal’s descriptions of her lived experiences with chronic illness are the heart of the book. The aspect I found most interesting was her discussion of her mindset, particularly around 2012 or “the end of the world.” I remember those times but never took the idea of a time-limit to heart, so to see how it related to her pursuing self-reliance, her experiences with her marriage and divorce, and handling her sister’s terminal cancer were interesting. I thought the contrast of these experiences with how she tackled her condition was well built. She not only had to unlearn physical adaptations but also mental and emotional ones.

In short, this memoir offers a lot to readers in thinking about our experiences and those of others, particularly with regard to chronic illness and promoting accessibility and equity.

[Louanne · Rating 4 out of 5]

I received this book from LIBRARYTHING for an honest review.

"Floppy" takes us to her discovery, that of a young woman who has been suffering from Ehlers-Danlos syndrome since birth - an orphan genetic disease - which manifests itself in a pathological extensibility of various body tissues -

The story opens in Montreal, today, and recounts with modesty and accuracy, the daily challenges she has to face, when nothing prepares her for them! This disease, little known and very rare, forces him to live with it, without ever being sure to tame it. Incessant falls punctuate her days, countless threads sew her body, but she faces them, with extraordinary courage, without falling into pathos or tears!

A powerful memory, revealing the invisible suffering, the one that cannot be seen... that we must hide from the eyes of others.
Ever since she was born, even before the diagnosis was made, Floppy has navigated in troubled waters: what does she have that the others don't?
Deeply moving!

A spearhead book for anyone struggling with something unrecognized.
I liked it a lot, read it! You will be surprised by the exemplary tenacity of this heroine, who nevertheless knows the uncertainty of her future, and never resolves to give up!

A superb story of hope and resilience, told with a humor of rare freshness!

[Amy A · Rating 5 out of 5]

Alyssa Graybeal’s Floppy: Tales of a Genetic Freak of Nature at the End of the World, takes the reader on a journey from childhood through adulthood and the many transitions between. Graybeal expertly takes the reader with her on her journey through years of living through pain and injury, through mis-diagnosis, and finally learning how to take care of her “floppy” body. Readers that have spent years searching for understanding, of themselves or their loved ones, will relate to the difficult road Graybeal took. Graybeal’s ability to tell the tale of her misunderstood, rare, genetic connective tissue disorder from the perspective of the patient is at once relatable, humorous, enlightening, and empowering. Part memoir and part travelog, she takes the reader on a rollercoaster through the northern US and Canada. At times lonely, other times inspiring, always vulnerable and honest. Readers suffering invisible, complicated illnesses, will realize the importance of self-care and loved ones/caretakers will find it eye opening. This debut novel, winner of the 2020 Red Hen Press Nonfiction Book Award, explores the conflicts between our internal selves and how the world sees us. Flop down with this book and join Graybeal on the journey to acceptance and advocacy.

[Betty Reed · Rating 5 out of 5]

As the parent of a daughter with Juvenile Arthritis, I knew about EDS, Ehlers-Danlos Syndrome from attending JA conferences. Often the biggest challenge with autoimmune diseases is being correctly diagnosed. EDS is a daunting chronic illness and what makes Graybeal’s story so compelling is the fact that she was correctly diagnosed with EDS at the age of ten, but her parents never pursued treatment. Having lived with constant pain, random joint dislocations, and imbalance that led to countless falls requiring stitches shows her inherent strength and desire to lead a full life. What made me so angry is that she lived with all of this for decades, because of her parents’ ignorance and negligence. It was only in her thirties that she discovered an EDS specialist who directed her to treatments that alleviated some of the effects of EDS. Yet Graybeal doesn’t let anger or a woe-is-me attitude into her life. Through the unease of feeling like she never fit in, her queerness, her parents’ limited emotional support, her marriage and divorce, she shows us that what counts is moving forward. That alone makes this book required reading for anyone who is challenged by chronic illness.

[Virginia Brackett · Rating 3 out of 5]

Readers can find something to identify with in Alyssa Graybeal's Floppy, a memoir focusing on her learning about and living with a chronic illness (the label eventually adopted for the condition), whether as a sufferer, caregiver, or friend/supporter to anyone with a long-term health challenge. I was glad to be educated about EDS, as I'd never heard of it. I found the author courageous for all she endured, particularly that of discovering that her parents had never followed up on therapy or treatment for her as a child, as well as the death of her half-sister. I enjoyed the extended metaphor of weaving to illustrate this connective tissue condition, although I thought that detail was overdone at times. The author's tone may be off-putting to some, as she appears self-important and dismissive of others at times.
In the Company of Patriots

[Amber Moore · Rating 5 out of 5]

I agreed to read this for an honest review.

I want to apologize that I didn't finish. I think I got 100 pages or so from the ending. I also have EDS and started this before having surgery, moving and tackling another college semester while also having a new baby. I had originally made a mental note of all the quotes I related to and wanted to include them. Well, it's been months and I'd have to go look through the book like I'm studying to do so.
But I loved what I have read so far. Reading her childhood snippets reminds me of my inner autistic child. I read it questioning if the writer is autistic and I don't think I've figured that out yet. It's always comforting to read peoples mentions of EDS in literature, how they describe it. There's not much out there, but when I do read it, it is such a validating and relateful experience. There's not much literature around EDS, let alone memoirs that focus on other parts of the person and their life. So all around, I just really enjoyed what I read and hoping to pick it back up soon and finish reading.

[Bethany · Rating 4 out of 5]

I received a complementary copy of this book in exchange for an honest review.

Alyssa Graybeal's Floppy is a lot of things, some of which seem like they'd be oppositional: heartfelt, dry, plodding, intense. While alternating times generally work for me, I found it a little tricky at times to grasp the narrative as it went back and forth. However, the writing was excellent, and overall the book is well-executed. I felt most intensely affected by the afterword -- I think the book's only fault is (as another reviewer mentioned) the gravity of Alyssa's situation is overshadowed in some of the childhood stories.

I enjoyed Alyssa's oh-too-relatable and cringe childhood fashion moments, her time on the softball team, her relationship with Mags (as in, the relationship was very well-written and engaging, particularly as Alyssa was trying to figure out what was wrong with Mags) . . . the memoir was very vulnerable and real while at the same time very factual and even-keeled, if that makes sense.

[Elizabeth Mitchell · Rating 5 out of 5]

Memoirs are hard to rate, hard to judge, really. They are someone else's experience, right? But sometimes, they get to the heart of an issue, they go beyond just one person's day-to-day life.

Alyssa's journey from a young age has been as disjointed as this book. As someone with Ehlers-Danlos Syndrome, I felt the back-and-forth chapters tug at the audience in the way that our bodies tug at themselves every day, dis-articulating both the the reader as they experience the story and the story itself. It was clever and jarring in equal measures, which I think is the sign of a challenging book. We could use more of those.

To top it off, her descriptions are real and visceral and relatable. Our lives don't mirror each other, but they felt close enough that I still felt what I will never know.

[Maggie Slighte · Rating 5 out of 5]

Last night, I finished the most amazing book. "Floppy: Tales of a Genetic Freak of Nature at the End of the World" was the first memoir I've read from someone with a connective tissue disorder, and it didn't disappoint.

I was halfway through it when I started reading last night, and true to its award-winning form, I couldn't put it down until I had finished it.

If you read, read this book. If you have Ehlers-Danlos Syndrome, read this book. If you have Marfans, read this book. If you enjoy creative nonfiction, READ THIS BOOK!!!

Basically, if you know how to read, please read this book.
You won't be sorry you did!

I found it in the new book section of my library, but it is on the top of my wish list at Amazon.

[Donny · Rating 3 out of 5]

I was given a copy of this to read in return for an honest review. It is not the type of book I'd normally go for personally, however as I am also a genetic freak of nature, living with Ehlers danlos syndrome, how could I not.

I've read it in fits and spurts, whilst demolishing a ton of other books, so it didn't really absorb me.
I didn't really like the jumping from child to adult, but I could so relate to Graybeal, the confusion, lack of information, help, fighting for knowledge, it truly depicts how WE feel.
I also love the fact that this disease is out there, in a book, that anyone can pick up and read, Graybeal is advocating for all of us and for that I applaud her.