My friend Catherine

My friend Catherine was hit by a car many years ago and lost her leg. She is a strong, smart, and brave woman who lives in Boston and works in health care. She wrote this a couple of weeks ago after the terrible incidents at the Boston Marathon. Very worth the read.

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I live in Boston and I’m an amputee.  Since the Boston Marathon bombings nearly two weeks ago, there has been a lot of media coverage touching on the amputations that have resulted from the horrible events of April 15, 2013.  It was only hours after the bombs exploded that local newscasters reporting live from outside Boston hospitals told viewers glued to TV sets that many victims had suffered severe lower leg injuries and limb loss.  How many?  They seemed to pause for dramatic effect before reporting the latest number.  Four at Mass General.  Six at Brigham and Womens.  A little girl at Children’s Hospital. 

A couple of days later, newspaper stories appeared, now with names, ages, and details of the amputations. This one, a 38-year old woman who lost both legs above the knee in the blast.  Another, 31, who decided to allow an amputation of her lower left leg as an alternative to living with a foot salvaged but badly damaged.  A couple of nights ago, NBC Nightly News joined other media outlets now shifting focus to the post-crisis period, the beginning of the healing phase. For these victims, now what?  “They have reported to Boston as though reporting for duty,” Brian Williams said, as he introduced viewers to two Wounded Warriors. They are veterans of the wars in Iraq and Afghanistan who lost legs in battle.  They've been visiting the Boston victims and sharing talk of specialized prostheses for running, biking, and “even SCUBA.”  It was a story that seemed aimed to give hope.  Yesterday morning, NPR’s Morning Edition ran a similar piece, to bring listeners in on what it’s like to be an amputee.  It highlighted a local young man, a former football star, who’d lost his legs in a car accident.  In that deep and soothing voice, Bob Oakes concluded by saying that this young man, “hopes that the survivors can focus on the positives and the future ahead, and know that they, too, can eventually run again.”

I have had a hard time hearing and watching nearly all of the media coverage since the bombings.  I lost my left leg below the knee after I was hit by a car while out for a run on September 15, 2000.  Since then, I have earned two degrees, lived in three new places, and held three different jobs.  I’ve also worked with some eight separate prosthetists, and have been fitted and cast more times for more prosthetic legs than I’m able to count.  Only a handful of them, over the past nearly 13 years, has enabled me to walk consistently without pain for more than several months.

Amputation as covered by popular media focuses on technology,athletics, and inspiration.  Prosthetics is portrayed as a highly advanced, clean and beautiful science – where biology and robotics meet to produce shiny, precision instruments that act as human parts,or better.  Amputees seem to come in just a couple of varieties – mostly veteran, Paralympian, or even model-triathlete –but often running and always inspiring.  The tragedy, the loss – yes, that is acknowledged. Yes, that is recognized.  But,viewing public, do not fear!  Do not lose heart.  With the science of prosthetics,this man will SCUBA again.  This woman,brave and determined as she is, will put on those favorite 3-inch heels and walk right across the room!  By the end of this 45-second story, you’ll see how it all comes full circle.  How everything comes to be okay again.  And you won’t have to feel sad, anymore, about the Boston Marathon amputees.  After all,they will run again.

This view of what it is to be an amputee is nothing like my experience.  I have not come full circle.  It is not possible to tie a neat bow around my story.  As my life goes on,evolves and changes, so does my experience of being an amputee.  And this includes both daily inconveniences and serious, painful challenges.  I have struggled to attain and maintain a single prosthetic leg that is consistently comfortable and meets my needs.  Prosthetics has revealed itself to me as an art more than a science, where there is rarely certainty about the cause of a new problem, and trial and error is the primary approach to resolving each new issue.  I grant that the technology is impressive. But the interface between that glorious technology and the human body –the part of prosthetics that deals with the fit and attachment of artificial limb to skin and bone – is not.  It’s unreliable.  It’s hot.  The most important piece is made by hand, so your prosthetist better have the right touch.

I have also not returned to running.  There are a variety of practical, technical,and probably psychological-emotional reasons for that.  It’s not out of the question prosthetically,but it wouldn’t be easy either.  Yet it is the most common question I get from people after telling them about my accident, which makes me think it is the prevailing expectation of other people for what I should be doing.

I don’t want the Boston marathon victims to have to think right now about all the crappy things about being an amputee.  I don’t wish that on them.  But I must say this.  Each of those individual people will have their own experience of being an amputee.  Just like I’m having mine, they will each have a journey of their own.  They will have their own successes and setbacks.  They will make choices about what activities they want to pursue, and what kinds and numbers of legs they want to do them.  No one should expect or ask them all to follow the model of an inspirational-made-for-TV story.

In the process of living their lives and being their whole selves, if any one of them is inspirational to you or any other single person,then I say that is truly beautiful.  But I have a strong urge to say out loud to anyone who will hear – please, engage your mind and seek your own true reactions to these stories of amputees you see on TV.  We amputees each deserve that.  Avoid being blindly sucked into the simplicity of the inspirational story, with the neat and heartwarming ending.

I am an amputee; that is in the fabric of my life.  If someone finds me inspiring – or doesn’t, because I’m not running again – then that is his or her feeling to have.   But no one else gets to define my story.  I’m the one living out my life with “amputee” as part of it, I own my story, and I’m not giving that up to Brian Williams or anybody else.