After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

The Importance of the Question

Recently I saw an interview about how important asking the right questions in life can be. The author, James Ryan, was discussing his new book based on his viral graduation speech from last year titled, “Wait, What?: And Life’s Other Essential Questions.” In a day and age when it’s all about immediate responses, reacting and moving on to the latest bulletin, newsfeed and tweet, it’s extremely prescient. The message was simple: what if you pause and ask “Wait What? What is it?”, and several other short yet thought provoking questions. The part I particularly found most fascinating was regarding a story about Albert Einstein. Apparently the legendary mathematician famously said if he had one hour to solve a problem his life depended on, he would take the first 55 minutes to ponder on the right question to ask. If he knew that, he would know the answer in five minutes.

This is something I absolutely understand. The value of the question is key in my world, to understanding and detecting my health abyss. Many years, almost all fifteen of them, has been focused on what questions to ask, and learning information to constantly refine them. At times when I didn’t know what questions to ask, I worked the problem reversely, trying to detect the answer I sought, to then define the question that would generate it. On the other end of the see-saw has been investigating the facts of my case that don’t add up, that I am constantly asking about but that often is acknowledged, yet dismissed. The questions lead to my refining them to ask them in a way that generates the search for answers.

It’s funny, but I never would have imagined being a patient is so much like being in sales, and literally “pitching” to my doctors questions, studies, and relevant tests that may lead to further information that will refine the questions. In short, it is an incredibly delicate balancing act. The balance is between keeping my emotions in check, the facts “in play”, and finding doctors who are curious at the anomalies. Well, and doctors that are not only curious, but willing to act upon the questions. In truth, it takes finesse, which I am not always good at, and a lot of tenacity. My mother and I have been known to ask for years for certain tests, and interestingly, when I have finally had them done, they've always brought more clues.

Over time, I have learned that it’s the questions that keep me going and not the answers. Whenever I am truly frustrated and done with being my own medical Sherlock, it’s the questions that bring me back to the search. And it’s the redefining the question, relooking, and restudying the question, that keeps the search relevant, annoyingly interesting, and somehow, keeps me going onward.

To Zella, A Tribute To The Dearest of Friends

To Zella, A Tribute To The Dearest of Friends

Remembrance  - Accepting the Unacceptable

Remembrance - Accepting the Unacceptable