"It was a joy and a privilege to review the advance copy of your work. I found the materials educational and enlightening for insight on the other side of the examination table…Your insight of the difference between a support person and a caregiver role was critical. I also believe that the ability to triage problems with a daily list and recording small but successful progress on daily lists is crucial. Highlighting the multiple facets “being” including personal time, spiritual growth, nutrition and exercise are all important in dealing with a serious illness. I also like the organization and structure of the book with tangible examples and the case study approach to help simplify your methods." ~ Dr. John Roffers, Physical Medicine and Rehabilitation
"Julia gifts us with a life raft when it looks like there is little hope after a debilitating tragedy. Her empathy and sensitivity for those in these dire situations is matched by her hope and practical advice on how to move forward rather than drown in the circumstances. I am proud to have witnessed her do this first hand when there was no such manual for her. And I am impressed and inspired by her willingness to pass on the wisdom she gleaned from having gone through her own life challenging journey." ~ Jim Morningstar, PhD, clinical psychologist and director of Transformations, A Worldwide Learning Community
"A careful and concise description of how a young woman negotiated her first year or so of a serious and life-changing illness including suggestions on how to organize essential tasks, communicate with family and friends, establish supportive networks and navigate the healthcare and disability systems.
She begins with her system of organizing tasks, evaluating the outcomes of her actions, and later describes her symptoms, diagnostic labels and expected progression. At first, this seemed counter-intuitive to me. Shouldn’t the diagnosis etc. be at the beginning? As a health care professional (registered nurse, nurse practitioner), practicing in family and community settings for over thirty years, I became aware of how accustomed I was to starting with the diagnosis. And yet at the same time, my practice has shown me over and over again, how limited the medical-only perspective is. Family setting, spiritual and cultural beliefs are often more determinative in how persons and families respond to the challenges of illness and disability. On further reflection, I realized that by making her focus on actions, universal for any one diagnosed with a serious and life changing illness, she was able to step into a positive mode of action not fall into the medical focus on symptoms and details. When her diagnosis presenting symptoms are finally disclosed they assume an appropriately secondary importance.
She takes an active personal stance and avoids becoming identified with her diagnosis and objectified by that step." ~ Phyllis Reynolds, RN
"...well-organized and supported by personal examples – if someone had handed it to me the day I faced the fact that I would soon have to stop working and apply for disability, I would have cried less and accomplished more, all with my self esteem more or less intact, and perhaps more friendships too." ~ Wendy Henning, former teacher and successful dog training business owner
"Your book is concise and an easy read. The matrix list system is a great example and the advocate support person is a terrific thought. Read twice." ~ Janet Pepitone
"My second reading of your manuscript has been both informative and deeply affective. Your personal reflections leading to your advice to the reader are precisely what many newly affected patients may need. In fact, other books do not seem to cover both how to begin telling or not telling others about the disease as well as how and why to apply for disability assistance. Yet, both of these two ends of your experience are essential parts of moving from a completely independent person to a person who understands how to keep her or his self respect, self-control, and dignity while accepting helpful support." ~ Val Friedell
"Thank you Julia for sharing with me. I think it is stellar – I love the way you combined pragmatic material with your own visceral experience…. This book will definitely help others." ~ Janet Means, retired social worker
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