I ‘interviewed’ Gail Rae, author of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I find her thoughts useful and thought provoking. How can you apply this to your own life and the choices you make?
Rosalind: I found your book so compelling. It brought me back to my own years of diagnosis and the early days of living with illness. What made you decide to write this book?
Gail: I decided to write this book because I couldn’t find the information I needed in one place when I was first diagnosed. I was too dazed and frightened to understand what my doctor was saying, much less ask him any questions. I garnered a fact here and another one there from my personal research and reading, but it was taking forever and I couldn’t fit the pieces into a whole. There were books available on the topic but they were too technical, too vague, too old or cookbooks and how to live with Chronic Kidney Disease. None of those was what I was looking for. I wanted a book that explained in simple terms what these tests were, why and how I could and should exercise and why I needed this diet in addition to enough sleep. I’d been a non-fiction writer for decades, but never thought I’d be writing for my own purposes. It was clear after about a year of looking that the only way I was going to get the book I wanted was to write it.
Rosalind: What does continuing to work do for you and your own relationship to illness?
Gail: It’s pretty easy to fall victim to “being a victim” or, in this case, the patient. I couldn’t see my life as one continuous regime of taking care of my health and that’s all. Don’t get me wrong: I do take care of myself. I follow the renal diet, exercise, take the prescribed medications and supplements, sleep enough and pay attention to any other ailments, but that’s not all I do. When I act, especially dinner theater, I’ve had nothing but wonderful experiences with directors making certain there was non-iced water available for me when everyone else was drinking soda or sports drinks. My chair at the college has made it possible for me to teach one two month accelerated course each term. As for writing, I’ve been lucky enough to be able to focus on the blog. I find I can easily integrate my illness with these jobs, plus with my roles as fiancee and mother. It took some fumbling in the beginning, but with people being so supportive, I was bound to get it right eventually. I think if I hadn’t continued to work (although I retired three times already prior to being diagnosed and just wasn’t happy not working), I would have become this victim. I’m thankful I have my jobs to keep me from becoming monomaniacal.
Rosalind: Has living with illness had an influence on your own relationship to your work?
Gail: Absolutely! I’ve mentioned that I teach an accelerated course. That means almost three hours at a shot. I’m very careful to take a ten minute break in the middle of the class. The students are performing better in the latter part of the class with this break in place. I also see that my taking small drinks of water throughout the class encourages them to do the same, again enhancing their performance in the latter part of this very long class. So my disease has turned out to be a boon for my students. I find I prefer film – even with its long hours – to stage work since being diagnosed. I can handle a long day of filming with days off in between while scenes I’m not in are being shot better than I can working four straight days in a show after weeks of four or five day rehearsals. Film work gives you lots of opportunity to rest: the same scene can be shot from many different angles and you need to wait for the cameras and lighting to be adjusted for the new angle. There’s always water at hand and, in the last few years, lots of fruits and vegetables. I am not a vegetarian, but many actors are these days. It makes it easier for me to choose the amount and type of fruits and vegetables I can eat right on the set. If it’s a company I haven’t worked with before, I’m sure to bring water and appropriate food with me. My favorite job when I’m feeling extra tired is the writing. I do this in my home office so can take breaks to rest, have a pantry full of foods I can eat and even a coffee machine for my two cups a day. Hmmm, seems I’ve written about food, water, and rest. I don’t exercise on the job anywhere. It’s too disrupting on a set or in a classroom, but I do manage to do it afterward by either shopping in a mall or big box store so I can zoom around at top speed for at least a mile or ride the stationary bike when I get home while I memorize a script or review a video for my class. On days when I go to work late or leave early, I also like to use walking tapes that include weights or bands. I’m so much more aware that it is a bit harder for me to work, so I choose jobs I like – a lot.
Rosalind: Is there anything else you think my readers would benefit from hearing from you?
Gail: From the reaction to the book and the blog, I’m convinced that people want the book. The question is how do we get it to them? Money is an issue for everyone these days. That’s one of the reasons I’ve had the book converted to digital. It will cost the reader less. Some e-readers allow you to share the book with others. I’d urge you to do that. I think if you have this kind of information and someone else with Chronic Kidney Disease doesn’t, it’s got to be shared. I wish I had the money to just give the book away, but unfortunately I don’t.
And, even if you requested the book at your library, take the time to look at the list of helpful organizations, websites and support groups in it to see if any are right for you.
Gail Rae, author of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, wrote the book she needed when she was first diagnosed. Patients,their family, friends, nurses and doctors have been reading it since. You can order it at: myckdexperience.com, Amazon.com or Barnes and Noble online. Both Amazon and Barnes and Noble also carry the digital version.