If I Die Before I Wake: A Caregiver’s Journey
by Eli Shaw
Westwood Books Publishing LLC

"I want to emphasize that no matter how troubled you are or difficult your caregiving experience is if you look for support you can find it. The key is that you have to be ready to receive it."

In this poignant book, Shaw regales readers with his life as a caregiver, among other things, and experiences “working with the disabled, kids with cancer, TBI (traumatic brain injury) and mental health, AIDS and Diabetes” in both official and unofficial capacities. Beginning sometime in 1992 at the height of the AIDS crisis, Shaw admittedly writes and edits the book over a period of years, the book changing just as much as his journey changes. The primary thread piecing the book together is Shaw’s relationship with his long-time friend and roommate, Mark. During the years that Mark succumbs to HIV infection and eventually to “the lurking demon” of AIDS, Shaw becomes both best friend and caregiver to Mark. With this comes a fluidity to their complex relationship, filling it with anger, pain, healing, love, and the indisputable bonds of friendship.

Accompanying their story is Shaw’s celebration of personal relationships with others afflicted by medical ailments or lost to illness or suicide. In one of the most emotional and moving chapters, “Elsie’s Garden,” Shaw ruminates on the inspirational relationship with the elderly couple, Elsie and Frank. During this timeframe, Shaw undergoes the transformation to becoming, in Mark’s words, “a real caregiver.” Shaw gracefully helps the aging Elsie and Frank in more ways than one until Frank’s passing and Elsie’s turn for the worse. One will tear up at Shaw’s remembrance of his final visit with the ailing Elsie at the hospital, recalling: “Here, this woman with so much energy and love was curled up, catheterized and in pain. I reached through the bed guard, which looked like bars from prison, to hold her hand. She looked like a little baby, scared and frail.” The chapter is a testament to Shaw as a person, to his humanness and compassionate ability to embrace others with the gift of care. In a different light, Shaw as writer and photographer documents the world through a lens that most people might not ever see. Though Shaw never claims to be an expert, his direct experiences in caregiving enable him to write this book honestly. And he asks us to listen and to engage in conversation with each other, even providing blank pages at the end of the book for reflection, thoughts, and opinions as “a form of legacy.”

Within the pages of this memoir, Shaw never shies away from imparting truths from the personal experiences that shape him on this “fantastic journey that has not ended.” He chronicles experiences such as the unfinished business with the sudden death of his mother, finding himself nearly homeless in New York City, and confronting his spirituality while climbing “this caregiving mountain as a self-proclaimed caregiver.” He considers how far-reaching and affecting his care for others is, especially for Mark, and how it is all “truly a spiritual experience.”

As a result, Shaw’s book is a meditation on the “mystery and pain” of life and death, of grief and healing framed by the contexts of the human spectrum. It is a call to welcome and support one another despite our differences and our walks in life. Through crafting this book, Shaw reveals “that writing can be a tool in working my way through the thickets in this briar filled garden we call caregiving.” He touches on issues of the stigmas and discriminations of illness, societal mores and beliefs, racism, and the diversity that both unites and divides us. It is a book that offers an opportunity to lessen the obstacles in life that are like “fallen trees in the road to where you are going.” And Shaw willingly becomes a friend both near and far.

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