My Life Matters

Last updated: May 2021

Let me first say that I'm 100% behind the Black Lives Matter movement and I've written a great deal about that on my own blog and elsewhere. This post is not about that movement or to take away from the necessary reparations that need to be done towards the African Americans in this country. This post is about living with metastatic breast cancer (MBC) and how I believe our elected officials believe those of us living while dying are not worthy of saving.

I've noticed a disturbing trend in the rhetoric coming from elected officials in the United States. This isn't meant to be a political post in any way, although most of that disturbing rhetoric is coming from Republicans generally and applies generally to those that follow the philosophies of those who are wealthy and white. I don't intend to start a political debate, just to explore how I feel as a terminal patient in light of the rhetoric.

Their lives matter

At the beginning of the pandemic, there was a lot of pithy statements about how the pandemic would just generally affect the elderly and then there were lots of people who repeated that, who dismissed the severity of the crisis for many reasons including, but not limited to, the fact that they were not elderly. This reaction ignores the fact that each of the people making those statements had grandparents at some point. Perhaps it is easier to dismiss concerns when it isn't YOUR family in the hospital? I'm not sure but watched that initial rhetoric with horror. I do have one living grandparent living in an assisted living facility (ALF) in Ohio and my husband and are very involved with his father's care; my father-in-law has been in a nursing home since 2005.

Their lives matter to me and the rest of my family.

Feeling fragile

I have watched with horror as COVID spread within nursing homes and then those same nursing homes tried to get relief from liability for their negligence in carrying the fragile elderly in their care. We have applauded most of the decisions of the nursing homes that we know about who closed their doors to visitors and did their best to isolate the residents. My grandmother and my father-in-law have not tested positive for COVID and are still as well as they've been for a while. They are both still fragile in many ways, yet their lives matter.

And then someone leaked a disaster planning document about how to ration ventilators and other necessary medical equipment if we get to that point. Each of the hospital systems I've been looking into has some sort of disaster planning on the books and they should. We all want our local hospitals and medical systems to be ready for a pandemic, to be ready for the worst. I recall the saying -- hope for the best and plan for the worst. Lennox Hill, a documentary on Netflix about a real hospital in New York did a limited COVID episode, which highlighted many of the adjustments and concerns that the hospital and its personnel had to make as New York was ravaged with the pandemic. (shoutout to Janice Cowden for the recommendation!)

I'm all in favor of protecting the mental health of the doctors and nurses and other personnel who are on the front lines of the pandemic each and every day. We need all of them to be well and at 100% to be able to care for all of us if we are sick and need help. Everyone at my cancer center, for instance, is pulling double and triple duty as they work so very hard to keep all the cancer patients in active treatment safe and able to continue to access care.

But

Every disaster plan has a hierarchy of the people who will be saved first. This version of triage, I believe, is there so that the doctors have an objective way of making decisions when the medical supplies are scarce. Objectively, I get it. In my head, I understand that a doctor who has to make life and death decisions in that context needs something to fall back on; they need to be able to make those awful decisions without agonizing too much about it.

But

What I can't get my head around is that I am at the bottom of the list. I'm 41. I have two young children, a 7-year-old and a 5-year-old.  I may not be working full time right now, but I am still useful, still productive, still helping people with my law degree as much as I can. My life still matters despite the fact that I am living with a terminal illness.

Terminal not expendable

I'm having a hard time assimilating this information. I'm having a hard time understanding the attacks on the Affordable Care Act, without which, I would likely be bankrupt and dead. I'm having a hard time feeling expendable. I'm having a hard time with the fact that people who don't know me and have never met me feel as though it's not worth the effort to ensure that I could be saved if I contract COVID.

I'm just not sure how to think about this position I occupy now according to those in power in the United States.

What about you?  How are you handling this rhetoric and the medical issues that come along with COVID?

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