Prism: Shedding Light on Life with Duchenne

by David K.

In this refreshingly relatable memoir, David K. humanizes the experience of life with Duchenne muscular dystrophy. His many poignant recollections act as a prism, making the invisible visible, and demystifying the reality of having this neuromuscular disease. Among his many experiences:

• Being a “normal” college student: living away from home, staying in a dorm, learning independence, partying

• Confronting his early mortality at the age of 13, and being entirely unprepared to deal with it

• Kissing a girl for the first time at age 19, and realizing that women could indeed be interested in someone with a severe disability

• Learning he needed a ventilator the hard way: nearly suffocating when out with friends, and rushing home in a panic

David does not sugarcoat anything, nor does he spout a lot of empty inspirational rhetoric. All he does is peel back the curtain and show what it’s really like to live with a disability.

Genres: Nonfiction, Memoir

274 pages, Paperback

Published July 9, 2021

About the author

David is currently 30 years old, and lives with his family in Chicago. He grew up in Chicago, and went to the University of Illinois, graduating with degrees in Psychology (B.S. ’13) and Social Work (MSW ’17). During his time in college, he was able to live on campus, away from home, and be fully independent, thanks to a specialized residence program at the University. The unique living situation gave David the opportunity to have many typical experiences that others with Duchenne do not often get to have.
Recognizing the uniqueness of his experiences was the catalyst for writing this book. David realized that his situation was a perfect case study of how much people with Duchenne can accomplish if given adequate support and encouragement.
Prism is David’s first book, and hopefully not his last. Most of his time is spent writing these days, but when he isn’t writing, you can find David discussing disability-related topics on his YouTube channel—Ramp It Up, or following the stock market. David also has an insatiable interest in history and archaeology, specifically ancient Egypt and Rome; he is always looking to learn more, and never misses an opportunity to watch a new history show or documentary. And, when he is not doing any of that, you can find David on a video call with his college friends, playing video games, or relaxing and watching anime.
If you would like to follow David, and keep up-to-date with future books, or just want to hear more from him, here are his social media links:

Facebook:
https://www.facebook.com/davidkauthor...
https://www.facebook.com/rampitup1

YouTube:
https://www.youtube.com/c/rampitup

Reviews

[Janae (The Modish Geek) · Rating 2 out of 5]

I appreciated David's story, but I didn't enjoy the writing. He mentions toward the end writing a blog, and that feels like the style he translated to this book. There was a lot of telling, but not much showing. The situations and dialogues came across as mechanical and formulaic. Intro, body, conclusion.

Adverse situations came up, but the resolutions were too quick for me. "I was depressed, but I pushed through, and now I'm better." I like more introspection and discussion from autobiographical writing. I learned more about David from the bio than I did from the book.

Shout out to Goodreads for the giveaway win.

[Brittany Valenzuela · Rating 5 out of 5]

I actually won this book from a contest on Goodreads and the fact that there had been a personalized note inside is what made me decide to make it my next read and I’m glad that I did!

The book had me feeling all of the feelings! I laughed a lot, I cried a lot, but most importantly, I LEARNED A LOT!

Thanks David for writing this book. I’m so glad I was able to read it.

[Peter · Rating 5 out of 5]

David K.’s 2021 memoir, Prism: Shedding Light on Life with Duchenne is an excellent memoir about his life with Duchenne muscular dystrophy (DMS). One of the main parts of the book is about David K.’s life in the Roberts program at a Midwestern University. I learn a lot about DSM from the book. I have been through a program like the Roberts program that teaches people how to train personal assistants (PAs) to work for them (66). My style with Personal Assistants was different from David K.'s style but he lays out very well the learning curve most college students with disabilities go through when they start to work with PAs. The name of the book comes from the fact that prisms refract light into different wavelengths. David K. uses the prism as a metaphor to illustrate the way that he views DSM. Usually, people only see one wavelength of light, but when lights pass through a prism people see many different wavelengths. David K. feels like people only see one part of being physically disabled, but there are so many different parts to being physically disabled (i-ii). I liked the book that was dedicated to Philip Edgerley. I did not know him as well as David K and his friends, but this memoir seems like an excellent tribute to Edgerley. David K.’s memoir is a readable and entertaining account of his life with DMS.

[Alison · Rating 3 out of 5]

I won a copy of this Kindle edition through a Goodreads giveaway in exchange for an honest review.

This is a memoir of the author's experiences living with muscular dystrophy, with the majority of the book focusing on his years spent living away from home within the assisted living program at his university. Overall, it was nice have light cast on a subject I previously knew little about, hence the "prism" metaphor used as the book's title. However, there were some passages that I found a little problematic.

I personally did not like the author's use of what he calls the "crip card," which is using one's disability to one's advantage to gain special privileges. There are some serious moral/ethical problems with this and I don't think it speaks well to one's character to knowingly deceive others.

I also get the impression the author was both sheltered and spoiled throughout his childhood. It appeared that no one (parents, doctors) had ever sat the author down to have an honest discussion about the seriousness of his disability, which forced the author to stumble upon the truth at age 14 when skimming through a biology textbook. That must have been rough, and I can't help but wonder if the author would have fared his college experiences a little better if there had been better preparation, communication, openness, and honest conversations happening at a younger age. It seems the author was also able to get away with speaking disrespectfully to his parents as a child, and since this behavior was never corrected, this initially played out in a negative way when the author went to college and is slightly pervasive in the tone of the book.

Speaking of college experiences, most of the author's stories center around late nights fueled by junk food, copious amounts of alcohol, lack of sleep, partying, and skirt-chasing, indicative of a naïve young adult trying to figure out his place in a college setting amongst his peers making similar poor decisions (I get that). Towards the end of his undergrad years, it seems the author was getting to know himself and his personal limitations a little better and there was evidence of positive personal growth happening, which was nice to see. I'm glad this book served as a positive outlet for the author and that he has found something that he enjoys and gives him purpose.

[Kian Ardalan · Rating 5 out of 5]

What an incredible opportunity it was to read David's memoir about his life with Duschenne Muscular dystrophy.

At its core, the book takes you along in an incredibly fluid and easy-to-read narrative from the moment of David's birth to the present.

It would be wrong to say that this book is simply a story about disability (don't get me wrong, it still is very much that) because it is also a story about a person, trying to get through the daily difficulties that so many of us take for granted in life.

It is a story about someone who is very much aware about their situation in life and isn't afraid to play the Crip Card (a term from David's college that I loved).

This isn't an inspirational story about someone overcoming their disability (thank goodness), it is a refreshingly candid journey about David learning to go through life with his disability. The story of someone trying to figure out how to ask out a girl, or taking part in bar-crawls and balancing college work.

I absolutely recommend this book to anyone who wishes to get a look into what it is like to live with a disability.

[Cami Eslick · Rating 4 out of 5]

Prisms help us see light we normally wouldn't see. The author uses this idea to help shed light on the life of those in a wheelchair. Specifically for him living live with Duchenne Muscular Dystrophy. I appreciate the author's candor into explaining all the obstacles he has to deal with and overcome as well as all the logistics someone like myself would not realize need taken care of. Something even as simple as going to a concert; do they have enough space for all the wheelchairs. Great book!!!

[Linda · Rating 4 out of 5]

I very much enjoyed this book. It gave good insight into what it is like to live with a debilitating condition, in this case Duchenne Muscular Dystrophy. Focusing on what it was like to deal with the challenges of his educational endeavors, David K. provides us with a fascinating journey of a life that is lived to the fullest.

[L E · Rating 4 out of 5]

Thank you to Goodreads for the free copy. Prism is an important story of the author's life with Duchenne Muscular Dystrophy. This is not a condition I was previously familiar with and appreciate the author sharing his story.

[Lisa Watson · Rating 5 out of 5]

Great read

Truly eye-opening. I hope more people give this a read and learn like I did. Great first person exploration of disability.

[Katrina · Rating 3 out of 5]

I won this book in a giveaway. It was an insightful read, and I enjoyed the stories. Great to learn some perspective. I wasn’t a huge fan of how it was written though.

[James Brooks · Rating 1 out of 5]

The author has a poor grasp of morals and ethics. I place this blame fully on the father of the author.

[Lisa · Rating 3 out of 5]

In this memoir, the author shares his personal story from his diagnosis with Duchenne muscular dystrophy as a child through his adolescent and early adult years. It's not elegantly written (and as a professional writer that was a little rough for me), but elegant writing/story-telling aren't the point of this book. The point (and the reason I read it) is the first-hand experiences of someone with a disease and physical disability that I can't possibly fathom. It's unfortunately so easy to categorize people with disabilities based on their disability rather than their whole person. Reading about all of the facets of the authors' life surprised me, and helped me take one tiny step closer to better awareness and understanding.