Jay Lake: Writer

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[Cancer]

[cancer] Field notes from Cancerland, further observations

Taking Umbrage

A couple of days ago, I linked to the Alternate History of My Cancer video that Waterloo Productions did with me while I was recently in the hospital. I am aware this has offended some people, especially those who have lost loved ones to cancer. Still, if I can’t make fun of cancer, who can? I’m losing myself to cancer, my life has been eroding around me for years. If I couldn’t laugh at it, I’d already be dead. Everyone has different lines of taste, propriety and offense-taking, but I’m not going to apologize for making light of that which has already stolen half a decade of my life and is highly likely to steal what’s left, permanently. This isn’t a time for decorum, this is a time for spitting in cancer’s eye.

Publishing

I’m starting to have conversations with publishers along the lines of, “If you die before this finishes production, how do you want us to…” Cheery as heck, but not beside the point. Chances are fair that I’ll spend most of the rest of my life in treatment, which seriously impairs my ability to write. Likewise, I received a convention GoH invitation this week to which I can’t respond positively, because I cannot confirm future availability with any confidence. Even if I get through this by some hook or crook, my publishing career is decidedly winding down. I’ll wind it back up again, should circumstances permit, but this depresses me. Another thing cancer has stolen from me.

Life Insurance and Long Term Disability

It turns out that I can draw down from my death benefits associated with my life insurance policies. Early disbursement would allow me a lot of flexibility in settling my debts and arranging end-of-life care expenses, as well as funeral costs and so forth. Unfortunately, thanks to the magnificence of our tax laws, the same funds which are tax-free if paid to my beneficiaries are taxable income if paid to me in advance of my death. Which makes drawing down from the policies financially ridiculous. I’m now investigating whether my credit union will accept life insurance policies as collateral on a personal loan, should such become necessary.

I’m also still puzzled at the fundamental cruel illogic of long term disability benefits. First of all, virtually every LTD benefit out there, including SSI, assumes that sick people can get by on less money than well people. They only pay a reduced percentage of your income. This is a ridiculous assumption, as experience as well as common sense clearly indicate that being sick is more expensive than being healthy. Even worse, as I’ve commented before, my primary LTD coverage, through my employer, explicitly deducts the value of any secondary LTD benefits, such as my much smaller self-paid plan and/or SSI benefits, from their benefit. Which appears to be perfectly legal and horridly unfair at the same time.

The system is very much stacked against sick people, and the terminally ill. The time, mental energy and organizational skills required to navigate all the nonsense is overwhelming, at a time of life when people are the least prepared to deal with that. I’ve come to realize this is a great moral failing in our society, one that we are largely blind to, and which we make excuses for when confronted. Meanwhile, sick people fall deeper into poverty and the miles-long tangle of paperwork imposed by compliance and fraud prevention, which are strongly prioritized over helping those in actual need.

Privilege

Once again I am also confronted with the exceptional amount of privilege (in the social justice sense of that term) with which I am blessed. That, and sheer luck. Sheer luck caused my cancer to present in a relatively early stage back in 2008 (for all the good that wound up doing me). Likewise luck found my lung metastasis in 2009 was found literally by accident. But the privilege…?

Having a job I can perform the essentials of even when rather ill is huge. If I had to work on my feet or face to face with customers, I would have been unemployed most of the past three years. Instead I enjoy remarkably flexible working conditions with a very supportive manager.

Having a high-end white collar job with good benefits, and smart people managing those benefits.

Knowing how to navigate complex administrative impediments because of my socioeconomic background and education and work experience.

Having a wide circle of friends and family so that I enjoy considerable support for lifestyle issues, caring issues, and administrative/paperwork issues.

Having a wide circle of friends and fans so when financial necessity finally caught up to me in the form of the extensive out-of-pocket costs for the genomic testing, funds could be raised through the generosity of hundreds of people.

The list goes on, but basically, without sheer luck and substantial privilege, I’d be destitute or more likely dead by now. Not because of the basic healthcare issues — after all, I’ve survived this long — but because of the drain on personal and financial resources discussed above. I simply couldn’t have afforded to stay alive if I were doing this all on my own.

Longevity

Though I haven’t personally seen the stats, I’m told I’ve outlived 92% of my cancer cohort. Certainly my disease progression has neared the end of the treatment flow charts. I probably shouldn’t be alive even now, and as discouraging as things are, I’m not exactly at death’s door at the moment. I don’t know what this means to me, emotionally or logically, but it seems important to take note of. And to be thankful for.

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