Staring Back

Today is the day. The sun is shining and spreading warmth – the kind of warmth that makes me want to shed my pants and don my shorts.  But before I do that I need to take a deep breath and make a mental shift.  I need to steel myself in preparation for all the stares.

I used to have a leg that was sculpted and painted to look as much like my long leg as possible.  About three years ago I made the shift to a C-leg, a very mechanical, robot-looking leg.  Instead of a Caucasian colored calf, I have a grey tube, complete with the C-leg logo.  I’ve always disliked clothing that advertises a brand and here I am walking around with a brand on my body.

I used to be able to pretend that my sculpted, painted leg made me look normal.  In fact when my prosthetist urged me to switch to the C-leg, I was worried about how that would change my husband’s desire for me.  I didn’t know how much my sculpted leg had fooled him, too.  I’ll never forget his answer when I asked him, “Would it make a difference to you if I had a robot looking leg?”

“Honey, I want you comfortable and happy,” he said.  “That’s the difference I care about.”

So I made the change and I love the way walking feels in the C-leg.  But I still have to get used to being so obvious.  Mind you, I’ve always stuck out, even with my sculpted leg, but with that leg, people usually had to take a double-take to realize what they were looking at.  With my grey C-leg, there’s no question what you’re looking at: a piece of hardware made to help me walk.

The feelings that arise when I’m stared at are a jumbled mess of discomfort, vanity, self-consciousness, pride, and, sometimes, anger.  I like attention as much as the next person, but I prefer it for something I did well or for looking good.  What makes me uncomfortable, even thirty four years later, is that I’m being stared at because of my deficit, because of my difference.  I understand that people are curious; I just don’t like being a curiosity.  And I don’t want to compartmentalize myself by saying they’re just curious about my prosthetic leg.  My prosthetic leg is not separate from my body; it is a part of my body.  So when people stare at my prosthetic leg, they are staring at me.

I used to stare back at people, well, glare actually, to let them know how rude they were being.  I threw my discomfort right back in their faces and tried to make them as uncomfortable as they were making me.  A number of years ago I stopped doing that. I realized that didn’t help the situation.  Now I just let people look or stare.  And deep inside, I remind myself:  it’s my difference that has shaped me, sculpted me into the woman I am today.  When they look at my prosthetic leg, they are looking at courage.  And when I look back at them, they are staring straight into the eyes of acceptance.

Okay, so here goes….. I’m digging out the shorts.

The Impact

Here is an excerpt from the first chapter of my book. “I love this song,” my sister Mary Beth says wistfully, as she navigates the snowy drive through the Chuckanut mountains to Bellingham, Washington. It’s 1978, and the hit love song, “Somtimes When We Touch” plays through the speakers of our yellow Ford station wagon. Christmas break is over, and my thirteen-year-old brother, David, and I are accompanying Mary Beth back to college, then making the two-hour drive back home to Bellevue. I’m seventeen and the prospect of that long stretch back thrills me but scares me too. Though there’s still plenty of daylight left, it began snowing shortly after we left home almost two hours ago and the roads up here in the foothills are covered in an inch of snow. “Yeah—I like this song, too,” I say. We all start singing along, crunched together in the front seat, David sandwiched between me and Mary Beth.

We are creeping along at about thirty-five miles an hour with the rest of the cars, forming a curving serpentine as we weave through the foothills.

“Oh no!” Mary Beth suddenly shouts. A white semi truck is in the left lane with its right turn signal on, and it begins to merge into our lane. The giant smiling face of a child that is eating a piece of buttered bread leers at me from the side of the semi, getting larger by the second. Mary Beth taps gently on the brakes, but our car starts to fishtail, like when I slam on my bike brakes on a bed of gravel. I throw my arm across David’s stomach, like my mother would do. As the car starts spinning out of control, I have this crazy memory of the teacup ride at Disneyland. My stomach drops and I flatten my feet against the floorboard. Though I’m scared, I’m also aware of how pretty the snowflakes are swishing past the windshield. I feel like I’m inside a snow globe. It seems to take forever for us to stop. Then we slam the guardrail so hard my teeth vibrate. The station wagon comes to a stop on the left shoulder of the freeway, facing traffic. Not one of us speaks. The windshield wipers continue their lazy swiping, the radio drones on, and everything feels quiet.

The cars in the right lane keep streaming by. No one seems to notice that a car with three young people in it has just spun out. No one is stopping to help us.

“I’ll get out and check the damage,” I say, my voice sounding calmer than I feel. I slip out the door and take a few steps to the front of the car, my legs trembly, breathing shallow, to see if the tire and bumper are damaged. I feel light, like I could float away, but also relieved. Inconquerable. We’re okay! I think. And so’s the car. I scurry back inside and make my report. We need someone to stop traffic so we can make a U-turn. Why isn’t anyone helping? I think. It’s one in the afternoon; how could everybody miss us? Then I wonder, What would Kevin do? My older brother, Kevin, is the problem-solver in the family, and since Dad’s death four years ago, I always look to him for answers. As if channeled by my brother, I suddenly know what to do. “I’ll get out and flag down some help,” I say. It makes me feel proactive and smart.

I get out of the car again and walk carefully around its back and up to Mary Beth’s driver’s-side window. She unrolls it and hands me her gloves. “Be careful,” she says. David opens the passenger side door and starts to get out. “David!” she yells. “Stay in the car!” David quickly slips his legs back in the car and shuts the door.

Now that I am out here on the shoulder of the freeway, I feel foolish instead of in control. How do I get someone to stop and help us? I wave my arms feebly, knowing I look stupid. Shouldn’t a seventeen-year-old girl standing next to a spun-out car be an obvious call for help? What am I, invisible?

Feelin' the Pain

I was with a distraught friend last week.  Her tears wouldn’t, couldn’t stop flowing.  Each thought she had elicited more tears.  And this made her feel weak. I’ve been in that place, thinking that my sadness calls my strength into question. I’ve chastised myself for my tears and my whining.  I’ve looked in the mirror in horror as I saw my blotchy swollen face from all the crying, wondering how the hell I could have stooped so low.  But I’m a strong woman! I become incredulous.  How could this happen to me?

My ideal of a strong woman was one who kept it together, who didn’t let life’s setbacks get her down, who did what it took to keep going, who became angry and indignant instead of sad. Breaking down in a puddle of tears on the floor was for wimps and I wasn’t going to be one.

But there have been times in my life when I’ve found myself there, on the floor, crying like a banshee, clutching my heart, not from physical pain, but from the pain of simply being human.  In order to survive that moment, I sensed that could only be in that moment and not fight it.  I had to surrender to my feelings.  So while my hands were clutching my pained heart, my soul opened up to receive whatever blessing that moment had to offer.

Coming out the other side of those dark moments, I have redefined what strength means to me.  Strength means that I am brave enough to feel the full breadth of emotion I have been graced with. Though I still want to ward off those times when I feel weak and insipid, I’ve learned to release myself into them, take away those judgments, and realize that it takes a ton of strength to feel the pain.

Beginnings

Happy Easter!  The sun is shining and it’s a beautiful morning here in Bellingham. Though I’m not religious anymore, I can’t help my feel a flutter in my heart on Easter morning.  When I was a girl attending the Easter service, with the pastel dresses, the heady scent of the incense, and the joy in everyone’s heart, I felt like a glass of 7-Up, bubbling from my toes up to my head, so delighted was I at the happiness that filled the church.

Though I don’t go to Easter service anymore, Easter morning still fills me with a similar, childlike excitement. I think that thrill comes from the promise of spring’s return. The piercing beauty of the blooming daffodils and forsythia and the stimulating scent of a freshly mowed lawn remind me that we have circled round again to this place of beginnings.  As the earth is waking up and bursting forth, I am compelled to do the same.

Last week I sent out query letters to about fifteen literary agents, looking for representation of me and my book.  Four responded, inviting me to send them my book proposal.  Two have since emailed me back saying they don’t want to represent me (ouch!) and two have yet to read my proposal.  So I’m holding this place of waiting with tenderness - as I would a new shoot emerging from the earth – and with hope – as I do each winter when the incessant rain persists.

Taking this risk makes me feel like a child again.  I feel that bubbling feeling from my toes and know that, no matter where this process leads me, I am stretching and growing as willfully and intentionally as a blade of grass.

I Can See Clearly Now

On Saturday night I attended the Seattle Men’s Chorus Beatles concert with my niece.  This was my brother’s 25^th anniversary concert so I was particularly eager to see his twinkling eyes up on stage.  Sitting further away from the stage than I wanted, I had a hard time seeing. For the life of me I couldn’t find my brother amid the 150 men up on stage.  My stomach sank as I realized I might not actually see my brother at this special concert.  I was trying to convince myself that it was enough to just be there listening, but I wasn’t buying it.  So at intermission I asked my niece if I could try on her glasses.  I slipped them on. Wow.  OMG.  WOW!

The world was suddenly brighter.  Clearer.  More sparkly.  I couldn’t believe how hazy my life had been.  It was like I had been looking at life through a thin piece of cheesecloth.  It was nearly miraculous that slipping on these glasses could provide such a clear perspective on life.

Yesterday felt much the same way.  I attended a full day workshop with Tara Sophia Mohr.  She engaged us in two topics: Freeing our Inner Writer and Playing Big.  The day was like slipping on a pair of glasses for my soul.  I was given a framework for and developed more clarity around how to manage the many parts of my writing life.  I was also challenged to identify my Calling and what keeps me from heading that call.  Tara is an insightful, warm, practical and engaging teacher.  She was both generous in her topics and with her spirit.  Being with Tara was like slipping on a pair of glasses and looking at my future with more clarity and understanding.

Oh and, yes, I did wear my niece’s glasses for a short time during the second act.  I found my brother and was able to see him sing Imagine.

A Wonderful Night

When I walked into the Seattle Sheraton last night to attend and speak at the Prosthetics Outreach Foundation’s annual auction, the air was humming with excitement.  The Caring Clowns were roaming the silent auction rooms cracking jokes and the wine was flowing. Well into the live auction, after dinner was finished, I went up to the podium to make ‘the ask.’   At first I was nervous, but when I remembered what it was that I was doing - simply sharing my story - and why I was doing it - not just for the POF, but for the many amputees in developing countries - I relaxed.  And I had fun.

I was so amazed at how generous the crowd of 250 people was, spending hundreds of dollars on a desserts and thousands for new legs for amputees in developing countries. Way to go POF supporters!  Many people with mobility impairments in developing countries will walk again thanks to you.

It is an honor be an ambassador for this wonderful organization and to have had the opportunity to speak on their behalf last night.

A New Perspective

As some of you may recall, last summer I joined Carol Frazey’s Fit School for Women walking program.  I really enjoyed it and would still be walking with Carol if her classes worked with my schedule. What I appreciated about Carol was her amazing balance between meeting me where I was and challenging me to the place she saw I could go.  I received her weekly newsletter today which focused on loving the part of ourselves that we typically degrade, put down, loathe.  Carol “came out” about her distaste for her arms, which, by the way, are amazing.  But it doesn’t matter what I think about her arms.  She is her own worst critic and when we live with that critic everyday, it’s exhausting and also very believable.  But she had an epiphany of sorts and is able to announce to the world that she now loves her arms.  Thanks, Carol.  You challenge me once again.

I spent the day on Mt. Baker skiing for the first time in two years.  Now, did I do anything to prepare my leg for this?  My knee?  No, of course I didn’t.  Did I send degrading mental messages to my leg while I was on the runs for wimping out on me too soon?  Of course I did.

But sitting here tonight, reading Carol’s email, I want to say to my leg, “I love you.”  And, as importantly, “Thank you.  You actually got me down each run admirably.”

Why I Write

Recently I set up a Google Alerts account with the topic “amputees,” which alerted me, through daily links in my inbox, to the latest noteworthy accounts of amputees in the news. Day after day I received articles either about über-athletes using the newest technology in prosthetics or the wounded warriors from the war, many of whom are soldiers returning to war after recovering from their amputation.  And I began to wonder, is it only through exceeding expectations that amputees are valued?  Is it only when amputees do the same as two-legged folks that we are seen a worthy? In setting up the Google alerts, I wanted to read stories about the “average” amputee, someone I could identify with, but I can relate to these people as much as I can to an Olympic athlete.  While their stories are amazing and inspiring, these are not my stories.

According the Amputee Coalition of America (ACA), on average there are 507 amputations a day in the U.S.  That’s over 185,000 people a year recovering from limb loss.  Where are the stories about them?

I receive daily posts on my Facebook page from amputees through the ACA, people who are struggling and challenged by their new amputation or their newest and latest prosthetic.  The majority of amputees in our country are a hidden population of people truly struggling.

That’s why I have written a book, to talk about the issues of living life as an amputee.  I want to give voice to the average amputee who deals with the daily challenges of ill-fitting prosthetics, and the (sometimes) life-long struggle with self-esteem. My story isn’t one of extremes; mine is the day to day story of dealing with a disability.

Amnesia

  A few months ago, I came home from work and discovered that Mark had lost his day-to-day memories from the previous two weeks.  He remembered who he was and he remembered me and the kids, but he didn’t know what the date was or what he had done that day.

Over and over, as I was getting ready to take him to the hospital, he kept asking me the same question, “What are my symptoms?”  I repeatedly explained that he’d lost his memory, but the answer didn’t stick in his mind.  “What are my symptoms?” He asked again and again.

On the drive to the doctor’s office, Mark’s question changed, “Did Luke call you at work?”  He had grasped his memory loss and was trying to piece together how I found out. “Yes, Luke called me at work. He was concerned about you.”  I took a deep breathe to calm myself against the rise of panic.  Was my life changing right before my eyes?  Was this the extent of the relationship with my husband for the rest of our lives?  Was my husband going to have a stroke right here, right now and die?  Or be in the hospital for months, recovering?  “Did Luke call you at work?”  Mark’s repetitive question pulled me out of my thoughts and I answered him once again.

I thought about my own doctor’s appointment in two days time.  I was going to be tested for uterine cancer.  What if Mark has a stroke and I have cancer?  How will we care for our children?  How will we work?  Pay bills?  The car needs new brakes.  What will we do?

“Did Luke call you at work?”  Deep breathe, Colleen.  I had to control the shaking that was starting from the core of my body.  Just one step at a time, Colleen.  Just one step at a time. 

“Yes, Luke called me at work.”

When the doctor told us that Mark had amnesia, I thought he was kidding.  This had to be some kind of joke.  Isn’t “amnesia” just an over-used plot twist in soap operas like Days of Our Lives?  Apparently not.  Transient Global Amnesia is caused by strenuous activity (Mark had been working out) or a significant change in blood flow.

By the next day, Mark had recovered the previous two weeks of memory, but eight hours of the previous day will be forever lost to him.  Because of his amnesia, he never even made those memories.

In the course of those few short hours before we knew he had amnesia, I was planning how to care for my husband with half of his body compromised from a stroke.  I was planning his funeral.  I was imagining how I would mother my children as I went through chemotherapy and radiation.  I started to plan my own funeral.

When my test results came back negative a few days after my test, I was struck by how much energy I put into my fears.  While the symptoms Mark and I presented may have looked like a stroke and cancer, neither of us were ever remotely close to having a stroke or cancer.  It was all in my mind.

For the next few weeks I was euphorically happy.  I was extremely content with life.  I felt like I was living mindfully – full of awareness for the beauty and sacredness of each day.

Every now and then I allow myself to be sucked into the day-to-day mindlessness that had consumed me prior to Mark’s amnesia and my cancer scare.  This is my own brand of amnesia, where I forget to hold the gifts each day has to offer.  But I try to remember that these are the Days of Our Lives and I wanted to live each one to the fullest.

For information about Transient Global Amnesia, click here

Point B

A few weeks ago my son and daughter each auditioned for a play.  I wasn’t sure either of them would make call-backs or not, let alone land a part.  I thought about what I’d say to them if they didn’t get a part or if they were disappointed in their part.  I was surprised at myself that “It will be fine,” or “It’s for the best,” were two of the glib, stock phrases of encouragement that came to mind.  My gut recoiled at the thought of uttering those words to my children. In essence, those were the phrases spoken to me by so many people after my accident, along with “God doesn’t give you anything you can’t handle.”  At the time, those words were infuriating.  They didn’t acknowledge my pain and grief; they didn’t offer me a road map.  Those phrases went from where I was, point A, to where the speaker believed I could go, point Z.  In those moments of utter pain and misery, I was just trying to get to point B.

But in thinking about those words now, so many years later, I see their truth.  When I look at myself, I did handle my amputation.  Everything did turn out fine.  And I can say in all honesty, my amputation was for the best.  Being an amputee has enriched my life on more levels than the pain, frustration, and fear have reduced it.

I can go back to each of my disappointments in life and realize that each of them was for the best, because each of them was a part of the road map that brought me here, to this life, right now.  And while I continue to want more from life, I can say that, right now, this is enough.

Will I ever say, “It’s for the best” to my kids when they come across disappointments?  Likely.  But I know I’ll follow it up with a lot more than that.  I know that I will try to help find Point B.