2013 was a busy year. Many inspiring moments, many not. I managed to stay out of hospitals, but not emergency or operating rooms. Much joy, much pain. Yin-Yang.
2014 I see as tabla rasa, my compass re-calibrated, goals refined and advanced, pen and lens in hand to immortalize and focus the moments that give me spiritual fuel, ambrosia, to live as wide and well as possible. Discovering inspiration in the good people and benevolent world around me is essential to that end. I’ve yet to write here for over a year, but I’ve found encouragement in a friend who may change that. Initially, I was lured in by her photography. Now, I’m inspired by her arduous journey of courageously confronting chronic illnesses with intelligence, grace, and humor.
I proudly introduce my friend, Dominique, who has graciously agreed to share her stories. Enjoy, and tune in soon for Dominique’s next installment!
Dominique here, introducing myself ~
When Cary asked me if I would be interested in writing for his blog, I felt both excitement and a sense of “who on earth gives a damn what I have to say?” After all, my particular expertise hardly applies (reproductive health research), and the experiences that do apply hardly make me an expert. Hell, I’m lucky to know which way is up some days. But I suppose what makes my voice valuable is simply how difficult my journey to come to terms with and manage my chronic illnesses has been, given that I’m particularly well equipped to deal with them.
What exactly does well equipped look like?
Certainly, my small frame and red hair give me no special powers for dealing with chronic illness. Neither, I’m afraid, do my freckles. On the other hand, my insatiable need to understand, and a particular interest in medicine and research – the one that led me to start shadowing a pediatrician at 13 and to take medical school classes despite deciding against going to medical school – have proved quite valuable. Because of these traits, I have a Master’s degree in Epidemiology – the science of researching the causes and treatments of health and disease – and I am currently working on my doctorate in Epidemiology. Well, I was working on my doctorate until my health deteriorated to the point I could barely stand, let alone focus long enough to get through an academic paper, and my department informed me I was going on medical leave.
Thus, up until the point I got stuck on the bench, my life’s work consisted of learning about the functioning and non-functioning of the human body, how to properly research these issues, and how to read and interpret the work of doctors and scientists. Doctors do not intimidate me and I am perfectly capable of understanding the medical literature as well or better than they do. I know much of the technical jargon and can research treatments and alternative protocols. I have few qualms advocating for myself and I am persistent to the point of stubbornness.
And yet, this is the first month in several years that I’ve felt like there is real hope for my future.
If I, with all of the advantages I’ve had starting out on my journey, still struggle to make it through the process of getting appropriate medical attention, accurate diagnoses, and actual progress, I’d say that dealing with chronic illness is a struggle for everyone. But it’s not impossible.
Much of what I have learned about getting a diagnosis, treatment, about getting through each day or hour, has come from other patients. Did my science and health background help me to get to the right diagnoses more quickly? Perhaps. Did they help me push for treatments likely to help? Sure. But none of it would have happened without other chronic illness patients pushing me in the right direction, inspiring me to keep going, and helping me find a way to get through this day. This hour. This minute.
And so, I hope to pay that favor forward. To help share some of my thoughts and experiences. To serve up my suggestions and ideas with a sprinkle of inspiration and, I hope, a heaping spoonful of humor!