After learning being diagnosed with “high-functioning” autism, writer Helen Hoang never told her mother. “I hadn’t really known how to tell her. More than that, I’d feared her reaction, so I’d simply avoided the topic around her altogether.” When I was diagnosed with a tumor last year and Parkinson’s this year, only five knew of my tumor, and only three (my doctor, my case manager, and a friend) knew of the Parkinson’s. Only three knew both, those being my doctor, my case manager, and a friend. Avoidance will either be my enemy or friend.
My doctor has routinely asked why I haven’t told any relatives. Chagdud Tulku Rinpoche said, “Death and dying is a subject that evokes such deep and disturbing emotions that we usually try to live in denial of death.” My brother is not particularly adept at dealing with it. And to be fair, most of us aren’t. Dealing with a terminal illness is hard enough without family instructing me to suck it up, swallow some Vitamin C, or work it out. Such a pronouncement would change every interaction; none of them are genuine. When I told my brother about the tumor, he was driving on the highway after flying lessons. Rather than waiting for a more suitable time, he listened to my diagnosis, demanded a second and third opinion, complete several other medical tests, and get back to him. He never called again, even when the date of the surgery came and went. The process of hiding or masking fits better in America’s society.
My military call-sign was ‘Chameleon,’ meaning I could almost on cue, adapt to any situation. I’m very good at it. I learned to blend as a kid because I saw people treated me, ‘different,’ ‘not socially adept,’ etc. Underneath that easygoing facade, was a soul struggling and found the minutiae of social interaction draining. The military changed that and trained me to adapt. It’s an acquired skill I continue to leverage and flawlessly execute.
I’ll admit, for months, I have considered coming clean. I almost came clean to my boss at work about the Parkinson’s diagnosis, but I know its impact on my career, for he was the second person informed of the tumor. Beyond that, I don’t want to have my illness define me, turning every conversation into a series of “how are you?” and every email into “here’s the latest cure you must investigate.” Nor do I want someone telling me to suck it up. Such conversations would provide neither meaning nor purpose. I aim to find out what the truth is for me and to live without vulnerability.
Vulnerability mustn’t be turned against me. It’s bad enough to battle a tumor Parkinson’s at the same time. I am unsure if I can fend off youth’s naysayers, demanding I fit into their mold. I don’t want to be the guy who seeks every nuanced therapy that provides marginal to no benefit. I want to live but live under my control, not under another’s umbrella.
Before the end of the year, I will tell my family. In subsequent days, conversations will become harder, and silences will grow. Relatives living in Chicago, Wisconsin, Florida, and elsewhere will email and either express regret or outrage at being uninformed. The ultimate question for every conversation will be, “Why?” And, it’s a fair question.
I have read many blogs where readers posed such philosophical questions of determining the proper moment to inform others of their terminal illness. Blogger Molly Kochan stated, “I have chosen to navigate this journey privately, with a handful of supportive friends and family. It was important to me to not be seen as a “patient” or as cancer.” I do wonder if my selfishness would impact others to such a degree that those affected would never move on. And so I say, “Yes. Eventually, they would find it within themselves to move on.” Therefore, I hope everyone focuses not on my final days (or year(s)), but rather upon leading the kind of life that will impact others. And should that be the result, then I would be truly inspired.