Jana Remy
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Jana Remy

  • Writing
    • Disability
    • Making History
    • Digital Humanities
      • dayofDH
    • Canoeing
    • Creative Nonfiction & Essays
    • Feminism
    • Bibliographies
      • Pacific Worlds Bibliography
    • Social Media
      • Mentions/Links
  • Scholarship
    • Awards/Fellowships
    • Conferences & Invited Talks
    • Collaboration
    • Workshops
    • Conference Planning
    • Technical Skills
  • Teaching
    • Blogposts About Teaching
anniversary #33
amputeebodydisability

anniversary #33

written by Jana May 21, 2017

Osteosarcoma Distal Femur0002Today, May 21st, is a day that is generally difficult for me because it’s the anniversary of the day that I was diagnosed with bone cancer.  And that diagnosis forever changed many aspects of my life.  A diagnosis like this one brings with is a lifetime of having to explain my complex health situation (my ‘pre-existing’ condition). It colors many of my social interactions, it means that I live in a state of simmering concern that the cancer will return.

It would be two days after my diagnosis that I would learn that my leg would be amputated and that I would be disabled for the remainder of my life. But in some ways that concern was very much on the back burner because what mattered most was that I somehow live long enough to let that matter–to have the problem of actually living with a disability instead of death by cancer being imminent.

Recently I mentioned to some of my students that I’d had bone cancer as a teen. Their demeanors changed dramatically when they heard that–I could see that even the very word of cancer was an impactful one, and to have ‘lived’ so long since my diagnosis (33 years!), well, that is a powerful thing.

Perhaps what I think about the most now, as I consider what the next 33 years might bring for me, is how I can maintain the greatest amount of health and mobility for myself as I face the natural declines that come with ageing.  I continue to need good prosthetics and good healthcare in order to live an active life like the one I have now, and that is an expensive prospect.  It also takes a lot of time and commitment to walk well and be strong.  Sometimes I am up for the effort that it takes and sometimes I’m not.  Sometimes I just want to be a couch potato and not have to try so hard every day.

But I think that is probably what changed the most on that day that I was diagnosed–that day I lost the luxury of laziness.  Since then I’ve had to work very hard to achieve even the basic goals of ambulation and self-sustenance, not to mention the extra energy that it takes to be gainfully employed, intellectually agile and socially engaged.  I don’t necessarily resent or regret it–it is what it is and there is nothing gained by wishing things could be different.  I suspect, too, that much of what I have achieved has come from being forced to be responsible and diligent in so many aspects of my life.  And in that I might even be called fortunate.

However, even if I realize that it is likely a larger good that this has happened to me (I don’t take even the simplest stroll down the street for granted), today I might indulge in a moment of ‘what if’…and consider what it would have been like to have been able to grow up without the added challenge of bone cancer and the loss of my leg.

Want to read a few other of my posts written on my cancer-versary? Click below.

Last year I spent my anniversary #inthegarden
In 2010 I had a giant fundraiser to buy prosthetics for a Chinese amputee
My 39th Birthday year
In 2012 I met up with an old friend in Zurich
In 2014 I told my daughter the story of my diagnosis

 

(image is not of my knee, but shows how osteosarcoma looks in a patient with a similar tumor)

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About Me

About Me

Hi there friend, and welcome to my blog. I started writing on the internet two decades ago. Since then I've started and finished a PhD program, left the Mormon church and became a Quaker, got divorced, remarried, found full-time work in academia, took up rock climbing and outrigger canoeing, and traveled across the globe (China! Belgium! Italy! Chicago! Montana! Portland! Gettysburg! and oh-so-many points in-between). This blog is eclectic and random--it has poetry and cooking and books. And cats. And flowers. And the ocean (my ocean). But in that sense it's a good reflection of me and my wide-ranging, far-reaching, magpie curiosity.

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