No one has to be your poster child

Yesterday was a ghastly day for me. I woke up at 5:15 to a vague Facebook connection’s post with a photo of David Bowie and a “see you.” My heart sunk to my stomach. I had spent the weekend listening to his new album Blackstar, which I had pre-ordered after hearing teasers for the last month. Dark Bowie. He’s gone there before, but, this time, it really struck me about a man coming face to face with his mortality. Never once did I imagine that it was because he was really at death’s door. His illness was kept secret for 18 months. Never once did it leak to the press, shared to those closest to him. Dealing with cancer myself, mortality is not something that I take lightly. Every day I am confronted with it, especially as of late with my disease worsening and facing the prospect of experimental treatments. I don’t always discuss my cancer and for a good reason. It’s impossible for me to identify as a “sick” person. Even when fatigue takes over my body, I am reminded by the fact that I am constantly in motion when I am not working on something. In my profession, I have faced pretty awful discrimination for my illness too and regardless of what anyone says, the Affordable Care Act is far from affordable. I support myself, so I have to work to pay my bills, have my employer cover a reasonable amount of my healthcare and to have the luxury to collect music, travel and have a beautiful cozy cottage in the city. Many patients with this type of cancer easily exceed my age by 20 years, when I was first diagnosed eight years ago, that was closer to 30. So, I don’t have a spouse to “take care of the bills,” going on disability isn’t a possibility quite yet because I am not “sick enough” and I’m not retired. Enter…. other obnoxious cancer patients. You know, the ones who bitch about a celebrity who has cancer and passes away and hasn’t disclosed the nature of their illness or has chosen to be their “poster child” du jour. The same thing happened a few years ago with Steve Jobs.

Earlier today, I was almost behooved to reply to said bitching cancer patient’s rant on Facebook about David Bowie’s decision to not disclose his cancer prior to his death. Then I thought, FUCK THAT, this is worthy of a blog post. The original post goes something like this…

Are you ashamed to have cancer? We wait to hear the details of David Bowie’s fatal affliction (what kind of cancer, his symptoms, who knew and so on) I wonder why yet another notable, outspoken about everything else – had to keep quiet about his cancer. Think on the imaginative insights and heightened awareness that could have come from his music, had he addressed the condition early on.

Same with Steve Jobs. He was secretive and misleading about his cancer, telling stockholders that he had a metabolic disorder when he knew that was a lie. Think what his considerable resources could have yielded on the nature and possible advances for treating the disease he shared with me – neuroendocrine cancer.

Yes, it is an individual choice and one I won’t argue. But the central message in “secret cancers” is to keep it hidden, as though even having the disease is something to be ashamed of. That’s not the way to move forward, in my opinion. I applaud Pres. Carter for being completely present with his cancer and the treatments involved in managing his disease.

I’m not ashamed to say I have cancer. If I can help, I will. But first, we gotta get honest and see how to move forward. Secrets are poison.

FUCK. THAT. It bears repeating.

This is a person who is outspoken in the cancer community, and, I might add, retired…and has been since their diagnosis. In all honesty, I don’t think people live in shame with having cancer. Some of us don’t particularly identify with “being sick,” since we actually feel pretty good for the most part. Some of us would rather get on with our lives and stay productive. Not everyone gets to sit at home all day and blog and post on public forums. In my profession, I am discriminated and judged by my illness. Withering glances from coworkers giving you the “pity” eyes or contempt that somehow you aren’t pulling your weight “because” of your disease is not exactly pleasant, particularly when you don’t actually “look” sick. I don’t hide my illness, but, I’ll be damned if I am going to get on a platform to be a poster child to make someone else feel better about their disease.

David Bowie, photo by Jimmy King
David Bowie, photo by Jimmy King

People can choose whether or not they care to disclose their illness and it’s not really a place for someone else to stand in judgement. If Jobs or Bowie had disclosed everything about their illness, the crushing judgement of “how they are doing their treatment or journey is all wrong” follows. Or the shitty pity eyes and people giving their fucked up accolades to get in good before the end. It’s a personal choice, and if we can’t have that, we may as all well line up at Carousel. (Sorry, that was an obscure Logan’s Run reference.) The bottom line is, as cancer patients we should never place shame or guilt upon ourselves OR OTHERS.

Sorry, this was a horrible tirade and frankly I don’t give a fuck. This is exactly why I hate the cancer community that I just happen to be a part of – because they cannot just allow someone to make their own decisions about their life and death without passing some judgement. Probably why I choose to keep at arms length of them.

To end this rant on a positive note, I wrote a piece on Strawberry Tongue about Bowie’s influence on a generation and why that is important to so many people.