Stare at Me

How Being Blindsided Brings Life Into Focus

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Pub Date 14 Sep 2021 | Archive Date 15 Jan 2022
KiCam Projects, KiCam Projects, LLC

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Joey Mullaney was only thirteen years old when he found out he was dying.

A rare degenerative disease would rob him of his ability to play sports. It would slur his speech and crash his confidence. It would even confine him to a motorized scooter as a teenager.

In this true story about his life so far, Joey reveals how he came to terms with the unthinkable. Teens and young adults will see pieces of themselves and their experiences in Joey’s journey of acceptance. And they’ll laugh along with Joey as he stutters and stumbles his way to discovering his true identity and finding his place in the world.

Stare at Me is more than an inspirational memoir. It’s the voice of a trusted friend that empowers every reader — the geek, the misfit, the introvert, the class president, the jock — to stare down whatever faces them and say, “I got this.”

Joey Mullaney was only thirteen years old when he found out he was dying.

A rare degenerative disease would rob him of his ability to play sports. It would slur his speech and crash his confidence...

Advance Praise

"Great perspective for young people dealing with tough things. I found myself reliving my childhood as one of Joey’s best friends rooting for him every step of the way." —Brian Scalabrine, NBA champion and broadcaster

"Stare at Me shows us a young man’s transformation from seeing his challenges as obstacles to embracing them as unique opportunities to live a full life." —Kyle Bryant, Author of Shifting into High Gear and Nonprofit Director of Ride Ataxia at FARA

"More than inspiration […] a story of grit and daring courage that shows readers there are no limits to what they can achieve, no matter what stands in the way. You must read this book, and then share it with others. —Divine Zape, Readers' Favorite

"One of the most candid autobiographies I have ever read. […] Joey Mullaney shows us how to go through life with courage and determination, and we should treasure this lesson to get the most out of our own lives." —Astrid Iustulin, Readers' Favorite

"A sharply penned and no-punches-pulled life story [...] Would highly recommend to young people who need guidance, but also for adults looking back and seeking hope and optimism." —K.C. Finn, Readers' Favorite

"Reveals an unconquerable spirit, determination, and courage [...] The boy who was horrified that he might be stared at with pity is seen growing into a young man who welcomes those stares, knowing that they carry an opportunity to help." —Kristine Morris, Foreword Reviews

"Great perspective for young people dealing with tough things. I found myself reliving my childhood as one of Joey’s best friends rooting for him every step of the way." —Brian Scalabrine, NBA...

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ISBN 9781734564235
PRICE $18.95 (USD)

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Featured Reviews

I loved this book- it’s both authentic and inspirational and felt like I was sitting across a table and chatting with Joey rather than reading his story in a book. This is a biography in which Joey finds out he has a terminal and degenerative disease at only 13 years old. Joey’s recollection of coming to terms with his disease is at times raw and at other times humorous, while being inspirational throughout.

The book covers Joey’s life from childhood until after he graduates from college. He bravely describes his internal struggles while keeping an outwardly sunny disposition- I think this is an outlook to which most can relate at some times in their lives. As an avid sports fan, I relayed closely to Joey’s love for sports and anecdotes from athletic heroes, and deeply felt his pain at being unable to continue to compete in the games he loves as the disease takes further hold.

As the book progresses and Joey stops being embarrassed and starts embracing the reality of his situation, I cheered for him. Not only was he able to use his story to inspire others, but he took us along on this journey of self-actualization; this left me feeling guilty about watching TV after finishing the book and motivated to think about how I can better help those around me :)

Read this book- you won’t be disappointed. It is a quick and easy read that will make you feel like you just spent a few hours meeting a new friend. Thanks to Joey, NetGalley, and the publisher for providing me an ARC in exchange for my honest opinion.

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Joey reached out to me to read an advanced copy of his memoir, and I made it a top priority. I read his bio and was really taken by his journey and willingness to be so up front about everything he's been through. I had a few critiques, which I'm sure will be addressed before it published in a few months, but otherwise, I really enjoyed the story. It was from the heart, raw, and honest, which is something that is always appreciated in any book. I feel that too often authors try to write a certain way to conform to a certain expectation or norm, and lose some of the impact of their messages, but Joey didn't fall into that trap. A strong majority of the book focuses on his upbringing, before his diagnosis and then through his younger years, covering up to his most recent accomplishments. It concludes with some supportive words for his readers, which I really think is the most important part of the story. Anyone with a disability, struggle, or disadvantage can read this with mixed emotions and come away with hope. Thank you, Joey, for sharing your story with the world!

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Suppose when you are just beginning your teenage years and you have so much life to look forward to, you learn that most of your dreams probably will never have a snowball’s chance in hell of ever happening? Life, as you know it, seems to be over. That’s what happened to Joey Mullaney when he was 13. He recalls that day and his life before and after in his memoir, Stare at Me: How Being Blindsided Brings Life Into Focus.

Joey was a normal, active kid. He loved sports. He was a catcher on his baseball team. He played football and basketball. He had great friends, two brothers, a sister, and parents who loved him. He was – and still is – a fan of Tom Brady and also of the Red Sox. Slowly, however, Joey’s twin brother Sean passed him in height and weight, not just by a little, by a lot. Worse than that, Joey’s skills at the games he loved to play started to decline. Finally, the time came when his dad sat him down to tell him the news. Joey calls it “FA Night.” FA is Friedreich’s ataxia, a degenerative neuromuscular disease that acts mainly on the muscles, including the heart. There is currently no cure. Joey was already familiar with the disease because his older sister has it. FA is caused by a recessive gene, meaning both parents must have it.

Joey’s journey with FA is somewhat similar to that of the stages of grief described by Elizabeth Kübler-Ross. He tried keeping it a secret from his friends, joking about his shaking hands and loss of balance, denying even to himself that he was becoming weaker. He became angry with his brother for revealing to others that he had FA, even though his friends cared for him and wanted to help him. Eventually, however, his frustration and anger grew to acceptance as he matured and began to realize his limitations as well as his other possibilities.

Mullaney’s writing style is very straightforward. He writes honestly about his shortcomings, his mistakes, and his lost dreams. He is also quite funny. Most of all, he is a very gifted, hard-working young man. This book is mostly geared toward teens and young adults, but Joe speaks to readers of all ages. What does it say to me, an older retired woman?

In my nearly 20 years in “my former life” when I worked with disabled adults, mainly those with intellectual impairments but also physical challenges – Cerebral Palsy, Down Syndrome, traumatic brain injury, Noonan’s Syndrome, autism, Rhett Syndrome, and others, and then knowing family and others who were coping with dementia, Parkinson’s, and strokes, I had never heard of FA. Thank you, Joey, for educating me.

Joey, I am also a fraternal twin. My brother Steve and I were born six weeks prematurely in Milwaukee to very Catholic parents, who prayed like crazy that we would survive. We both made it! I had a clubfoot, which required many visits to a doctor and specially fitted shoes. It was embarrassing that I couldn’t wear white shoes for my First Communion like the rest of my second grade classmates, but other than that, not really a big deal. I loved playing sports and had my share of injuries. Believe me, when you get older, they come back to haunt you! Steve was called “the Professor” in school because his nose was always in a book. He was much more of an introvert than I; we are the oldest of eight kids! I followed the Twins and Vikings; I even made the “B squad” on the Bemidji State volleyball team, and I am only 5 feet tall!

But I had a secret too. One time in a therapy session, I finally blurted out, “What if I’m gay?” My therapist just looked at me. Calmly, she said, “What if you are?” I realized that I had been so afraid to “go there” that I had never realized the possibilities of actually going there.

So, Joey, I sort of get where you’re coming from, a little. It’s freeing, isn’t it? You have to let people in. Let them know you. Let them know the real you, even what you consider to be your frailties. You make them your strengths.

I love all the examples you give of how your family, especially Sean, and your friends have been there for you, even when you really didn’t want them to be. I love the Sleeping Giant adventure! That gave me goose bumps!

Your journey so far is an inspiration to anyone with an obstacle, be it physical, mental, internal or external. You’ve made peace with FA and are becoming the man you are meant to be. Your memoir, Joey Mullaney, is a SLAM DUNK!

A big thank you to Joey Mullaney for allowing me to preview his book. Also, thanks to NetGalley and to KiCam Projects, LLC for this ARC copy in exchange for my honest review. My opinions are my own.

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Just within the last year I began to read memoirs, a genre that had never before been on my radar. Joey’s book drew my attention as he has Friedreich’s ataxia (FA), a genetic disorder that I briefly learned about in medical school. I find that you never truly get a good understanding of a disease until you take care of a patient with that disease. Since I never saw a patient with Friedreich’s ataxia in my thirty plus-year medical career, I thought I would try to learn more about it through Joey’s memoir.

My criteria for a great read is that the book triggers feelings in me, lets me really get inside the protagonist’s mind, and teaches me something. Check, check, and check. This book did it all for me. Joey discovers he has FA when he is 13 years old. His parents know when Joey is 9 years old but opt to give him as many years as possible to be a normal boy before he has to don the albatross that FA can be. When his symptoms become noticeable, he is told of his disorder. Joey is blessed to have his parents and his family (including a sister with FA and his own fraternal twin brother) for support. Joey goes through a gamut of mindsets and emotions over the years, much of which he shares with the reader. He takes us through the highs and lows of his early childhood, middle school, high school, college, and beyond up to the present (age 26). Basically, we see how Joey grows and evolves to take control of the disease and his life as much as humanly possible and leaves the self-pity and the urges to shy away from people and other challenges in the dust.

The emotions are all over the place as we take this journey with Joey. There’s anger, sadness, shame, fear, anxiety, determination, courage, jubilation, and pride. There is also love. Plenty of love between Joey and his family, friends, teachers, coaches, therapists, mentors, and life itself.

Like the realistic novels of Lisa Genova, Joey’s memoir gives me a good handle on the nature of an unfamiliar neurologic disease. This one is rare, only 50,000 (of 330 million) people in the USA are afflicted with it. I plan to remain aware of these people.

This is a truly inspiring story. How many people in Joey’s position can make lemonade out of such an unfortunate lemon like Friedreich’s ataxia? The book moves quickly (I read it in two days, which is fast for me), is told in a straightforward way laced with humor and soulfulness, and is a joy to read. I highly recommend it to everyone.

I would like to thank Net Galley and KiCam Projects, LLC, for an ARC of this book. I especially want to thank Joey Mullaney for sharing his inspirational story with the world. Opinions are mine alone and are not biased in any way.

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The author of this work was kind enough to send me a digital copy of this book to read in exchange for an honest review. And since it is hot as hades outside, I might as well read sitting in front of the fan, right????

From the publisher, as I do not repeat the contents or story of books in reviews, I let them do it as they do it better than I do 😸.

Joey Mullaney was only thirteen years old when he found out he was dying.

A rare degenerative disease would rob him of his ability to play sports. It would slur his speech and crash his confidence. It would even confine him to a motorized scooter as a teenager.

In this true story about his life so far, Joey reveals how he came to terms with the unthinkable. Teens and young adults will see pieces of themselves and their experiences in Joey’s journey of acceptance. And they’ll laugh along with Joey as he stutters and stumbles his way to discovering his true identity and finding his place in the world.

Stare at Me is more than an inspirational memoir. It’s the voice of a trusted friend that empowers every reader — the geek, the misfit, the introvert, the class president, the jock — to stare down whatever faces them and say, “I got this.”

I truly loved this book -- it is written in an engaging manner and highly inspiring. It makes you want to stand up and cheer him on and to curse higher powers for giving him this affliction. I laughed, I eared up, and I cheered. I will HIGHLY recommend this book to friends, family, patrons, book clubs, and people reading books in the park as we do … I have had some of my best conversations about books down by the Thames!

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While I hesitate to use the words "inspirational" and "motivational" because of the negative connotations those words have in the disability community, I'm not sure how else to describe this book because it's definitely presented in a way meant to motivate readers to live life to their fullest, regardless of circumstances. If I had just one criticism, it was that there was almost too much positivity.

Mullaney's humor and personality shines through, and I loved the emphasis on the importance of community and on not letting fear stop you from living your life. A lot of the stories are grounded in his love for sports, and even though sports tend to bore me, I enjoyed reading this, which says something about how compelling the writing was. Props to Mullaney for his authenticity and vulnerability in what had to be a very difficult memoir to write.

I'd recommend for those looking for memoirs with a motivational slant and for anyone looking to learn more about the struggles disabled folks have to deal with in a world that isn't as accessible as it should be. And since most people don't know nearly enough about accessibility, that should include most non-disabled people.

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STARE AT ME - Joey Mullaney with Michele Matrisciani

I received this to my Kindle for the purpose of review from Net Galley. True story about Joey was diagnosed with FA (Friedreich's ataxia) at thirteen. This rare degenerative disease robs him of his sports dreams, slurs his speech and almost crushes his confidence.

Joey finds that his disease has no cure as he has watched his sister suffer with the same disease, fears, anger, denial and so much more comes crashing in on him. Joey is a twin but only he has the disease.

The boys are best friends in all circles, as any mother would dream, and because of Sean Joey can fight both the outside world and his internal crisis.

As a wheelchair user full time I could so relate to all the mental, emotional and physical aspects of an unsuspected journey in life.

I highly recommend this book for anyone who is struggling with everything from a short term issue like a broken leg to a permanent degenerative disease.

#Stare at Me #Net Galley #Goodreads

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A moving story of what it is like to live with a disability and transforming into a stronger person because of it.

Joey Mullaney started life as a regular kid, playing sports and constantly asking his neighbor friends to play. In middle school, he started to notice that his twin brother, Sean, was excelling in sports while his abilities were actually decreasing. Joey was having more and more difficulty dribbling. Until one day, Joey learns that he has Friedreich Ataxia (FA). FA is a progressive, hereditary disease which impairs (among other things) coordination and can shorten lifespans. Now, think of trying to process that in middle school. Initially, Joey doesn't want anyone to know and hides his condition as much as possible. Throughout the book, Joey learns to embrace who he is and try to light the path for others.

Full disclosure: It would be impossible for me to give an unbiased review of this book. So there is that disclaimer. For the past year, I have been battling ataxia myself so many of the issues that Joey speaks about in this book rang true for me as well.

To the disabled readers, I want to say that I see you. You are an unstoppable force, and you are doing great! This book, Stare at Me, talks about how Joey doesn't just want to be seen as a person on a scooter. He is a hardworking person. I would just like to be seen as a person. I walk very poorly with a cane. I still can't walk straight but the cane helps me not to fall down. It is extremely obvious that there is something horribly wrong with my walking. 90 year olds typically run (or shuffle quickly) to open the door for me. People do stare with extreme pity. The best is that they think that it is very subtle. About as subtle as a freight train. I am not in pain. My legs just collapse and don't respond to commands. I don't want people to stare at me like a 3-headed monster. I do want them to see me as a person, just one that can't walk very well. When I see other people in canes or wheelchairs, I see them as my friends. I know the courage it takes to get out of the house every day.

For the non-disabled people, I think that is important to understand how disabled people experience the world. Joey has a great attitude and tremendous work ethic which is an important message for everyone: Do not complain. There are a million reasons to be sad and justified reasons. However, every life has a dash. Birthyear dash Year of Death. No one knows how long their dash is, but we get to determine how to live that dash. We are all dying. No one is guaranteed a tomorrow, but each day we get to decide to rise to the occasion. Joey mentioned all of the people who helped him, and it is a great reminder that we can all do better. What can we do to help our fellow human beings?

For everyone, this book is also challenging us to do better. How can we make the world a better place? Can one person carry another up a mountain? No. But can 40 people together accomplish something impossible? Yes. Be one of the 40. Who can you help today?

Overall, I loved this book, and I will probably read it at least once a year. Before I sign off, Joey did mention a promising clinical trial. He didn't go into too many details so I don't know if this is the study that he was referring to, but I will say that there is some very, very exciting technology being developed. It is called CRISPR which is a gene editing technology. Recently, there was a man who had some genetic illness, and he had one treatment with CRISPR (in essence it cuts out the bad DNA and inserts the good DNA piece and then replicates throughout the body) and it was successful. Hopefully, the CRISPR technology will be available to treat FA. Please don't give up!

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I was initially drawn to Stare at Me because of the cover and title. As someone also born with a genetic muscle disease that affects many aspects of my life, I was intrigued. Reading the synopsis I felt like I’d get along with the author, Joey Mullaney. I finished the book in less than 24 hours and give it a solid 3 out of 5 stars.

The book is easy to read and generally relatable even for a non sports-loving girl like me. There were some hilarious stories but I also appreciated his honesty surrounding situations such as the realization that he has FA. I silently cheered as he began to let others into his world of FA instead of constantly trying to hide it.

But I’ll be honest and say this is also where it gets a problematic for me. On the one hand I genuinely wanted him to learn to accept and embrace his diagnosis. I think it’s awesome that he has found his his passion and mission in life. But, on the other hand, I feel like this is another example of the standard “my disability can’t stop me / I’m going to fight it” type of messaging. I feel like the final third of the book focused a little too heavily on this theme. There is absolutely a place for this kind of messaging but I wish that it diminished the vulnerability he expressed earlier in the book. Sometimes this forced positivity can be harmful for both people with disabilities and without disabilities. On a technical level, some of the chapters also seemed disorganized or smashed together without clear transitions from one part to the next.

All in all, I’m glad for the opportunity to have read Stare At Me. It was a fun filled read with some serious questions tossed in and i look forward to seeing what else Joey does with his life.

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Stare at me tells the story of Joey Mullaney and his disability. This is the true story of his life so far. He was born in Massachusetts with two older siblings and a twin. At the age of 13 he finds out he has a genetic degenerrous disease, that will inevitably end his life. His older sister has the same condition, and that the strange thing about his novel, he does not mention his sister much or any advice she might have given him.

The novel starts right back in his childhood and tells the story of his sporty family and how he got involved in as many sports as he liked. This was when he started to notice changes in his body, not being able to pass the ball in the right direction, missing shorts and tripping over, he says "my legs were not moving so fast as everyone else's or that my muscles fatigued more quickly".

We follow him onto high school, where sport still dominates his life and then to college. He really does achieve some amazing interesting things that anyone would be proud of, let alone someone with a disability.

The only down side for me was his negative use of language such as "annoying wheelchair days" or 'afflicted by FA" and "being confined to a motorised scooter".  I'm disabled myself so this didn't feel right in such a life affirming novel, I know these might have been his feeling at the time he could have just said that or expressed it differently.

I also didn't understand the American sports references, being a British woman! But I enjoyed the book regardless.

Thanks to NetGalley and the publishers for giving me a digital copy of this book in exchange for a honest review,

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I was interested to read this as I became chronically ill and disabled overnight too and wanted to read someone else’s experience. I gave it three stars because it’s not bad but as I am not overly interested in sports, I got bored reading those parts. I also didn’t like the pity parts of the story which I know are true parts of the story but not parts that I felt comfortable reading about.

I don’t feel right giving ratings to non-fiction but this book just wasn’t really for me.

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