The pros and cons of telling my story
My husband and I moved our car insurance to a different provider as a means of saving some money. We were paying a ludicrous amount on two cars while we have driven less than two thousand kilometers combined on both vehicles in the last year.
When the insurance agent spoke to my husband, she asked him all kinds of questions about how much life insurance we had, long-term care insurance, and the works. We have no insurance on me. Don't get me wrong, we would get it, but it always goes the same way. It was no different today.
Insurance agent chases down a 30-something upper-middle-class couple. Forces them to get insurance for the wife. They make the application. An assessor calls them. Asks about family history. Emphasizes that we should not disclose information on genetic testing, but asks if any parent / first-degree relative has had any hereditary conditions. They start with the more "normal" ones: heart disease, kidney disease, etc. And build their way up to the MS, ALS, Parkinsons, finally coming to Huntington and Alzheimer's. I say yes to the Alzheimers question after a split second pause that is obvious to me, because my heart also skips a beat. Kudos to them for not showing emotion. They give you a range. Ma'am, at what age was your mother diagnosed. 30-39, 40-49, 50-59, over 60.
I know I should not be ashamed, but my voice invariably becomes small. 40-49, I say as the air leaves my body and a shameful energy envelopes me. This is my third rodeo. They either deny my coverage or come back with a ridiculously high premium and we decide against it. It makes me wonder, why do we even try.
This is a huge cost to my family. My husband works his corporate job instead of starting a country music bar because he is worried about caring for me, you know, in case something happens.
Technically, I could lie. My mother's death certificate states the cause of death as a respiratory failure from pneumonia. In those days, we weren't getting death from Alzheimer's related complications as the cause of death. Actually, I am not sure people in India are able to get the real cause of death for HIV / AIDS and dementia-related deaths even today. I am not sure if people even want that. The stigma and trauma attached to these conditions continue to be immense.
I could lie and get insurance and protect my family and me. I can simply shut up about this exhausting disease and go about living my life, and no one could blame for it! But I would perpetuate the stigma and the shame attached to dementia, especially to Young Onset Dementia. Families like mine, we are just a number. A number to reassure others that what we have is not contagious. Less than 5% of all dementia cases are genetic. I have parroted this line as an Alzheimer's counselor. All the while adding to the shame and stigma that is lodged inside me - worse than the DNA if you ask me.
I tell my story unabashedly. I want to live freely. My story deserves to be told. My mother's story deserves to be told. The stories of People of Colour experiencing rare diseases need to be told. For our sakes. For all your sakes. This labour comes at a high cost. I am willing to pay the price because even though I am just one voice, I know I am a strong and powerful voice.
Of late, I have been reflecting on if I am even "allowed" to not tell my story. My Dhamma-based life path teaches me that the greater good is of utmost importance. If an action serves me well, while not benefitting others, in fact harming others by reinforcing negative stereotypes, then it is not doing me any good in the long run either.
Capitalism and exceptionalism teach us that we are to be ahead of all else - money, awards, book deals, followers. The social service sector is the exact same while wearing a cloak of modesty and humility. We have to be something - it could be anything, as long as we appear a certain way and gather social capital points of some sort! Patriarchy teaches people that family is most important. So, we hide our trauma and secrets and our authentic selves and continue to live mediocre lives.
The Dhamma path tells me that living authentically is first and foremost an act of selfless service. When I tell my story, many Ektas benefit from it. When I stop hiding my wounds, I seek help and heal fully - the cycle ends with me. This is the greater good.
What happens to my family and me? Only time will tell. I will not go gently into the dark night.