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Where I’ve Been: Wearing a Wet Laundry Spacesuit, Fighting a Big Black Bird

January 19th, 2010 by Jeff Simmermon

Last May, I used this blog to announce to the world that I had developed a very sudden and statistically rare case of testicular cancer. I had surgery, had the thing removed. Which remains, to me, a totally unacceptable way to lose a testicle. Maybe at the tip of a pirate’s saber, or while wrangling a giant octopus deep under the ocean, those’d be okay. But a regular old organized cellular rebellion — fuck that.

I wrote a series of posts that talked about my condition, what I was facing, and how I was holding up. It seemed only natural to me at the time, the best way to keep friends and family posted while I was dealing with something I really didn’t want to talk about on the telephone any more than necessary. Folks commended me for my bravery, for my sense of black humor and optimism, and told me how well I seemed to be healing up.

And yeah, in a way I was healing up. But in this other way, I really, really, wasn’t.

As my body was healing up, my mind was slowly donning a space suit made out of 400 pounds of wet laundry that never dried up and never, ever came off. Food all tasted the same, and I’d find myself flying into sudden rages when individual air molecules struck my skin.

Every night I’d lie awake and just look at the dark air above my bed, watching the little glowing fireflies that live in my retinas while an enormous black bird whispered very, very destructive and completely logical things into my ear.

Actually, I have a story about that part, which you can see here — the audio’s a little problematic, but you should get the gist:



Note that at the end of that story, the bird does not fly away. I wrote that story maybe in August. And at some point during August, that bird began to help himself right into my mouth at night, forcing his big greasy feathers past my teeth and uvula until he could wriggle down and sit right onto my heart.

I used to fight it, used to literally lie there with my eyes shut and list everyone that has ever loved me by name like my own Lord’s Prayer against my own special monster, but the struggle just prolonged the inevitable. So I got to where I’d just open up and let that big black bird right in.

I’d get a couple hours’ sleep, but every morning I’d have this thought, before my eyes even slid past my dry, wrinkly eyeballs:

I got cancer, and one of my testicles was removed very suddenly. It was attached to the drain in my soul, just like a bathtub stopper is tied to a chain. All my passion drained out, and if it ever comes back it’s going to take a very, very long time.

Then I’d dress myself, slowly, and go to work.

Which I really shouldn’t have done. Right after the surgery, all I wanted to do was get back to normal, just get the train right back on the tracks and act like nothing had happened. Which I really, really shouldn’t have done.

I will always be grateful to my colleagues at work who gave me the space to be a complete and utter train wreck, and pretended right along with me that I was performing useful work. Instead of just kind of flicking an endless lap between Digg, Reddit, BoingBoing, Facebook and Metafilter. I was rolling around that office for a good five months like a marble in an empty bathtub, and for several of them I thought that bird had left me.

Instead, I turned into the bird. I wanted everyone to feel as pointless as I did, to understand that really, all we think we have is just a marble rolling around a bathtub and one day some giant invisible hand is gonna turn that shower on and wash all our fun right down the drain. I didn’t understand how anyone could look forward to anything.

Ever.

And I was crippled, too, by this paralyzing fear that I would lose my job. This job is the first stable job I’ve had with really, really good health insurance. And I needed every drop of it. I have to get CT scans once a month as a preventative measure – and those things cost about ten grand if you pay in cash. I also have to take artificial testosterone every day, for the rest of my natural-born life. And I’m of course taking antidepressants, too. I’m not just dragging home a sack of medicine once a month, either.

I’m seeing an endocrinologist, a urologist/oncologist, and a psychiatrist once a month. They take blood, they run tests, they run me through some very expensive machinery. And these guys, they don’t work cheap. All this is just to get me to feel normal. If this cancer comes back, they’ll catch that, too. I was pretty bitter about it for a while, but now I’ve just accepted it.

But if I didn’t have my job, didn’t have my health insurance, I’d be screwed. I’d be screwed, if I weren’t dead.

I’d be dead right now if I didn’t have some high-octane fancy-pants health insurance. And if I weren’t dead, I’d be bankrupt and homeless, living in my parents’ garage while they went bankrupt trying to take care of me.

And as far as I’m concerned, anyone that opposes health-care reform is pretty much okay with that. They’re okay with people bankrupting their entire families just to stay alive, and they’re okay with me and everyone like me having to live with that big black bird every day for the rest of their severely shortened lives.

I can’t talk about health care reform rationally, and I can’t consider compromise. I go from hearing the topic to cocking my fist in about fifteen seconds. Being gleeful about the fact that the first attempt to reform the system will get stonewalled is the sole province of ghoulish, gutless cuntbags.

For real. If you’re reading this, you’re probably already in my corner. If you’re not, shame on you. I don’t even want to know your side of it. Seriously. Just keep your mouth shut and think about it for a minute and realize that very, very bad things happen to people out of the blue, every single day. And it takes them the rest of their lives to recover, IF they recover. That’s bad enough. Losing their homes shouldn’t need to be a part of the equation.

So clearly I’ve still got some anger issues to work on. But apart from having a personal vendetta against the kind of gutless, narrowhearted cuntbags that would deny their countrymen adequate healthcare, I’m feeling a lot better.

Now when I wake up, I feel like any day could be a good day. I took a big fat break from writing and blogging and just focused on work and my girlfriend and getting my head back together. I spent a lot of time getting enough sleep and having dreams that were progressively less terrifying. Took a big old vacation and got some things rolling again at work. And now I have to admit, I’m getting better.

The day is never going to come where I’m a hundred percent sane and rational. That’s fine by me. I wasn’t like that before, being like that now would be weird and wrong. But most importantly, that big black bird isn’t sitting on my heart any more. And I don’t think I’m that bird anymore, either.

But I’m ready to stretch out and fly all the same.

19 Responses

  1. Running Budgie Says:

    Fuck cancer.

    Seriously. I have a close friend who changed jobs and didn’t have health insurance for the first three months in her new job. And what happened? She got cancer in that small window.

    Total bullshit.

    I’m so glad you’re recovering physically and emotionally. But you shouldn’t have this Sword of Damocles hanging over your head, the treatment you need depending on your employment. That’s one thing I’ve never understood about the US health system… Sigh.

  2. Claire Bidwell Smith Says:

    Great post, Jeff. I’m glad you’re writing about all this.

    You have more people than you even realize in your corner. And I’m not just talking healthcare reform.

  3. Valerie Says:

    I, too, can’t stand people opposed to healthcare reform. Often the opinions expressed are from popular media and conservative soundbites passed along without the trouble of actually thinking about any of the issues themselves.

    Hope your recovery continues to go well.

  4. Felipe Budinch Says:

    I’m from Chile (South America), and I can’t even begin to grasp whats wrong with your lawmakers..

    Here we’ve got a private health care system, BUT it does not depend on your job.

    It works kinda like a savings account, you’ve got to pay a monthly fee (the amount depends on a percentage of your salary) that gets invested and that pays for your most of your health expenses (depending on your plan, you usually end up paying about 10% of the cost).

    It’s not perfect, it does not cover everyone, but god damn, it looks awesome if i compare it to your system…

    Keep up the fight, you guys need that reform.

  5. Jeff Simmermon Says:

    Felipe — thanks for your note. I really appreciate it. You know what’s really embarrassing about America, though? You felt like you had to remind me and my readers that Chile was in South America. I’m not offended, just ashamed to admit that from your perspective, it made perfect sense to clear that one up.

  6. Sheria Says:

    The weird thing about this entire world of blogging is that there are times when you read some stranger’s blog and feel an instant connection. Our stories are different, no cancer in mine, just chronic a-fib, congestive heart failure,diabetes, and a leaky heart valve. I work full time and take a dozen medications daily that give me a pretty good quality of life. I have excellent insurance through my employer but if I had to seek private insurance I would be classified as uninsurable and my monthly premiums would be in the range of $3000 to $4000; I checked. I’m alive because I have had healthcare insurance through my employers, without it, I would have been denied coverage fo pre-existing conditions when I changed jobs. Health care reform is essential and I agree, I have no patience with those who would argue otherwise.

    You are a very elegant writer and I am grateful that you share your story with such honesty.

  7. Jessica Says:

    I was screwed by the pre-existing condition clause when my employer switched health care plans during my treatment.

    I don’t think I would have made it without my co-workers (I’m a nurse and at the time I was working at a large, teaching/research hospital; the irony) granting me favors.

    You don’t know me, but know that I have enjoyed your work. Thanks for the smiles. I will always be rooting for you.

  8. The Dentonista Says:

    I was with you up to ‘cuntbag’. As the proud possessor of a cunt, which I carry with me day and night, I’m sick and tired of ‘cunt’ being used as a pejorative. If you meant dirtbag – say dirtbag. If you meant scumbag – say scumbag. If you meant dickhead – say dickhead. But you don’t really mean ‘cuntbag’ because, let’s face it, you love cunt, and you should.
    So please, curse cancer all you want as the sneaky, miserable, little shit that it is, but show the cunt some love.
    And don’t go quietly into that good night of failed healthcare! Keep railing against inertia, misinformation, and greed.
    In fact, why not write your Senators and Congress people?

  9. Mmm... Says:

    I am sorry you have gone through and do hope things continue to get better. And yes, I totally agree healthcare in this country is screwed up, however, I totally disagree with what you say here:

    “Being gleeful about the fact that the first attempt to reform the system will get stonewalled is the sole province of ghoulish, gutless cuntbags.”
    –that is unfair, self centred, and frankly, terribly insulting and crude, to boot! It is not being gleeful about what you say but wanting the reform to be done properly! Many Dems even in MA’s Senate election stated that although they too want reform they don’t want something ramrodded through that doesn’t fully appreciate all the complexities and gives too much power to big government or makes too many exceptions or makes State funded abortion part of this national health”care.”

    Having grown up in so-called “free” healthcare in the UK, (costing us about 33% of one’s already massive taxes!), let me tell you the healthcare is far inferior overall. Yes, it’s of course better than nothing if wothout when it means the difference between life and death but I am quite positive Americans who are used to efficiency and excellent care would be appalled to have to have the kind of minimal real coverage we had and put up with coninutally postponed as not necessary tests and check ups and such as we all too oftenendured. (Just look at most Brti’s teeth even to see what is passed as decent care! LOL!) Let alone too many stories of truly sick people being kicked out of hospital beds and sent home when those even closer to death’s door come in. I have seen this too many times with my own step father, to name just one person. It is no picnic and as such, all the complexities need to be figured out slowly and changed slowly. This country is too varied and big to make one system work for everyone everywhere but yes we need affordable care for everyone too.

  10. Kristin Says:

    Sane and relational are highly overrated. Or maybe they’re not. Maybe they’re not rated highly enough by the people who have them. They can disappear pretty quickly, leaving us a big hot mess from which it takes ages to recover. If we ever do.

    It’s good to read your words and see your thoughts again. You are a wonderful writer.

  11. Mr Pitchfork Says:

    I enjoy your writing. It feels like well-seasoned potatoes. (That’s a good thing)

  12. Tweets that mention And I Am Not Lying » Blog Archive » Where I’ve Been: Wearing a Wet Laundry Spacesuit, Fighting a Big Black Bird -- Topsy.com Says:

    [...] This post was mentioned on Twitter by Margaret LaFleur, Sheila Addison. Sheila Addison said: Great post about cancer, depression, and health care: http://bit.ly/8RlKYt [...]

  13. Joe Ferguson Says:

    Firstly, I’m glad to hear that your feeling more positive about the future, I too ‘feel like any day could be a good day’.

    Secondly, shame on you ‘Mmm…’. dental care in the UK is free to all children under 18 or in full-time education or adults on a low income. If by 18 years of age the UK population haven’t learned to look after their teeth, then why should the government be forced to provide dental care? Dental care in the UK is totally different to ‘free-to-all’ NHS Accident, Primary and Secondary health services which does not cost 33% of income as you suggest, National Insurance is at most 8% and most importantly, access to Health Care in the UK is not means tested. Simply, if you are poor you get access to the same extensive services as a millionaire.

    Please keep up the blogging Jeff. Your honest writing is refreshing and not crude in the slightest.

  14. Michael Says:

    The YouTube video and the following writing are powerful. Thank you for sharing your voice, even through despair.

  15. teri brennan Says:

    Courageous performance! Obstacles are there only to test how much you want something. Humor is courage extended into the human experience.

  16. Raini Spring Says:

    thank you so much for sharing your experience.
    you have earned the right to grieve. follow its path. do what ever action your soul tells you it needs. listen to the small voice within you that knows the truth, and move accordingly. if you feel welcome, enter, if you feel hesitant, DO NOT. this will guide you slowly but surely to the home within you.
    it will take years. surgeries, and all the medical procedures you went through, fuck us up. our mind has to literally reformat brain cells when it looses part of its knowing. our spirit has to heal and come to terms with this change.
    i understand feeling sorrow for those you’ve seen so close to death. they know you too will one day be there.
    finally, never give in. there will be joy in your heart again. it will be better than you have ever known, because you will have made it through adversity.
    and if you are at the bottom of a deep hole, stop digging, and make a list of as many good things about your life as you can. even if it’s only that you have a warm coat.
    best of luck on your journey through time and space. wish i could give you a hug.

  17. Sean Winburn Says:

    Good stuff Jeff. Reading this was moving… the video was downright cathartic.

  18. Halcyon Says:

    What a moving story. It’s funny how sometimes a stranger can touch our lives in such a profound way. It makes you realize that sometimes your words and actions can really have an effect on someone else’s life.

    Thanks for sharing your story. And thanks to all the “strangers” out there.

  19. Braidwood Says:

    Man, I know that big black bird. It seems to live close to death. Very scary and hard to shake sometimes.

    I had an experience a couple yrs ago I called a “dark night of the soul”. I think its similar to the big black bird: http://authenticthreads.org/blog/2008/08/26/dark-nights-of-the-soul/

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