Posted by: Teri Simon | 2012/07/15

Survivor Guilt-It’s Time to Talk

survivor guilt cartoonGood evening, my friends.  I begin with my personal health update, keeping you in the loop with the latest and the greatest on how I’m doing.  The answer is:  pretty darned well!  I had my second dose of chemotherapy on Thursday, and it, like the first dose a week earlier, went off without a hitch.  No side effects until last night (kind of tired), but my exhaustion may be due to a little more than Taxotere.  You see, Friday afternoon, I had saved up all my energy to be able to go with Joey to get his new iPhone upgrade.  We ran that errand, and then, well, folks, we went to Walgreens so we could pick up a few things, and I actually pushed a cart around the store and was able to do that!  And then, friends, we went to Kroger’s, where I again pushed a cart and did a modified grocery run!  It’s been about, I don’t know, 2 months since I was in a grocery store? It was HEAVEN to do NORMAL things! And in a NORMAL way–no cane, no wheelchair (I had Taylor go out a couple of weeks ago and buy me a small wheelchair from Walgreens so that I could be a little more mobile)!  If I pushed the cart and leaned, I could do the deed!  I was SO HAPPY!!!!!!!  And then yesterday, out of necessity (read: nobody around to take me), I drove to a local appointment and it was just fine!  OK, after I got back, I spent the remainder of the day in bed, and had to have the kids bring me dinner in bed, and today I’ve been on the tired side, too, but look at how much better I’m feeling and doing!!!  Yay and yay and thanks for the prayers and support!  I continue to sanctify this treatment I’m on, bless the good foods that I’m eating, pray, meditate, and generally keep good spirits and highest of hopes.  It feels good to be the Flying Elephant vying for Poster Child status again.  So very good indeed!

Which is why tonight’s topic may seem a little weird to you.  But the subject of Survivor Guilt has been heavy on my heart for a very very long time now, and friends, I just gotta deal with it.

So what is Survivor Guilt?  One dictionary definition is: a deep feeling of guilt often experienced by those who have survived some catastrophe that took the lives of many others; guilt that derives in part from a feeling that one did not do enough to save the others who perished, and feeling unworthy for having survived.  It’s linked to Post Traumatic Stress Syndrome, and can result in debilitating depression and anxiety disorders.

Our country saw a major case of Survivor Guilt after 9/11.  Soldiers coming back from tours of duty often experience it.  And many of us dealing with serious illnesses, cancer, for example, experience it.  Regularly.   I came across these articles online that I think you might find interesting to expand your understanding of this syndrome.

This one references 9/11 and gives basic information about Survivor Guilt.   This is an excellent article from the New York Times a year ago, which offers the information from soldiers’ perspectives.  And this article  from curetoday.com, offers the perspective I’m most familiar with; that of a cancer patient.

I’ve been personally experiencing Survivor Guilt for a very long time now,  perhaps a couple of years,and until June 2nd of this year, I didn’t even realize it.  You’ll recall that June 1st was when I went into the hospital, thinking I wasn’t going to come out alive.  On June 2nd, I not only emerged alive, but improving, and although I still consider myself to be recovering, I continue to improve.  By leaps and bounds.  What woke me up to what was really kicking my tush, though, was a visit with the wonderful Leora Horn the week after I got out of that hospital mess, where we talked not only about what my treatment options were at that point (hence the Taxotere now), but talked a little bit about the wonderful fellow Lung Junk patient, Todd, who had passed away in late May.  (You might remember me dedicating a blog to his wife, Erin not too long ago.)  What I may not have shared with you in my blogs is that that night, I had the very worst panic attack I’ve ever had in my whole entire life.  Well, mostly because I think I’d only had like ONE panic attack before then.  Friends, it was a horrible night, full of pacing, and taking sedatives and anti-anxiety medication and still not being able to sit down and my kids frantically trying to help me, but there was nothing they could do, and I paced, and prayed, and paced more, and prayed more, and tried to sleep and couldn’t, and just FREAKED OUT!  Finally, I wore myself out around 3 in the morning, and slept, and when I awoke at 6:30, I was tired, but fine.  Well, not FINE, exactly, but much better.  I spent a good part of that early morning trying to figure out what the heck had set me off like that.  Was it the discussion about my treatment options, and how hard it is to know, to REALLY know, if I was choosing the right one?  Maybe, at least in part.  That’s some scary stuff.  Was it knowing that although medical research in lung cancer is blooming like nobody’s business, and while the options on the treatment menu may seem to be shrinking, more are coming onto the menu all the time, so it’s kind of good, or not good depending upon how long I can hold out?  Yeah, that’s kinda cool/scary stuff, too.  Was it the look on Leora’s face as I asked her how to trust that what I’m choosing is the right choice?  Because her answer was confident, but she surely felt the full weight of me saying, “We’re partners in this, and I trust you.  Can you handle that?”  Maybe so.  But no.  Upon honest, deep reflection, it was about…..the fact that Todd was gone, and I was still here.  Todd, strong, handsome, 10-years-younger-than-me, where did this lung cancer come from, amazing man was suddenly not here.  And I was.  Still here.  Friends, it hurt me in a way I didn’t really see coming, and reminded me with sharp arrow accuracy of other losses to cancer that I’d experienced on my life path.  The first major blow was in October of 2010, when a vibrant young member of the Gilda’s Club group I’m part of passed away.  I had known him for 3 months, and the impact he made on my heart was HUGE.  His spirit was a large one, and his zest for life never ended until literally when his life did.  A few weeks before he passed, a friend’s mother passed away from, you guessed it, lung cancer.  This past year, three more members or former members of our group passed.  One of them was also a, yup, you guessed it, lung cancer patient.  Granted he was much older than me, and had chosen to forgo treatment for palliative care.  And his choice kind of put me in a place where I thought, “you know, I can choose whether or not to fight or to just let whatever happens happen.”  Scared the crap out of one of my fellow Gilda’s Club friends, and you know how I spiraled downward during the spring, so we see where THAT attitude got me.  Sort of. Another friend’s father passed from, you guessed it, lung cancer, just a couple of months ago.  Several lung cancer advocates, strong, amazing people, passed away around the same time Todd did.

But it was Todd’s death that shook my tree the hardest.  He made such an impact on my, and I only met him twice.  We emailed only once or twice.  And I loved him.  And I sat there, the day after that horrible panic attack and thought, “Why is he gone?  How is it possible that he’s gone, and I’m older and have been dealing with Lung Junk for way longer than he did, and I’m here and I have treatment options and why is he gone and I’m not????”  And then I had to take another 1/2 of an anti-anxiety pill because I started freaking out again.  And I put Todd and my Survivor Guilt back into a nice little box and vowed to not unpack that sucker again, at least not until I could process it a little more, and with maybe a little guidance.

And then June 22nd came.  June 22nd was a day when I was thrilled and honored to talk to about 30 doctors at Vanderbilt Medical School, and give them the inside scoop on how to partner with their patients for care, especially those who have long-term and debilitating illnesses, like, you know, cancer and such.  Friends, it was a THRILL!  One of the best days of my life, for sure!  I posted about it on my Facebook page–maybe I even blogged about it?  It was way fun, way cool, and way good to spend time as Teri the Teacher, yes with the perspectives of a Flying Elephant, but to be kind of like the professional me!

But what happened prior to my starting my talk, well, was Todd.  You see, Leora was in the crowd (thank goodness), and one of the residents came up and was talking to both of us, and he had known Todd, and so we were all talking about Todd, and how sad we were and I knew that before I went to bed that night, I was gonna need a couple of sedatives.  And yes, once again, I had a panic attack, this time much less intense, but it was there.  And it was Survivor Guilt.  It hurt my heart a lot.  A lot.

Yesterday, I spent time in the company of Wonderful Therapist, who helped me unpack a lot of this Survivor Guilt.  He’s so awesome and I work really hard in those now all-too-infrequent sessions.  I realized that I am not to blame for Todd’s passing, nor anyone else’s, and you know what else?  Todd is not to blame for it either.  I’m not still here because his passing made way for me.  I’m still here because I’m still here.  Case closed.  I could not have saved him nor anyone else.  I can do what I can to keep myself going, but who knows when my number will be up?  Nobody.  And when it’s up, it won’t be my fault or your fault or anyone else’s fault.  And when we survive, we simply survive.  What I realized, as I unpacked all that pent-up loss and sorrow and guilt, was that what CAN happen, and I kind of think SHOULD happen, out of loss and sorrow and guilt is a renewed sense of living well.  I mean it.  I think the best thing we can do to remember and honor those we’ve lost is to live as well as we can, with honor and dignity and help for others and enjoying things that are wonderful and doing the best we can with what we’ve got.  We should speak of those we love and lost when we can, and recall what we enjoyed about them, and then we should live like we’re really living.  Sometimes just for us, and sometimes for us AND them.  I realized that I cannot bring Todd back, but I can recall Todd and I can continue to advocate for lung cancer patients, and do what I can to help other people, which is like my life’s mission anyway, and keep doing what I can to keep the Lung Junk at bay, and live like Leora suggested from the get-go that she was going to help me live:  for as long and as well as possible.  To do that, I honor not only all whom I’ve lost, but I honor, and get this, friends, MYSELF.  The person and spirit I was designed to be, with all that I am here to do and to enjoy.  And that is how I live well. It turns out that that feeling of being unworthy for having survived is a big lie.  A great big lie.

So that’s my talk on this subject.  I am so grateful for this forum to express myself, because, whew, y’all, that really needed to come out.  If my perspectives help you a little bit, too, then more’s the better.  Guilt is a trap.  I pray we all avoid it a little better this week.

I send you much love from the Land of Lung Junk,

Teri, the not-so-guilty-feeling Flying Elephant

 

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Responses

  1. Congratulations, Patruck!!!!! You keep going- we all need to see success. It helps breed hope!

  2. Teri, thank you for mentioning survivor guilt. As a newbie survivor who has had so much go so right frankly there are times I do not even want to stand up and be counted, just doesn’t seem fair.

    Double thanks for sharing your journey, I’ve taken the liberty of listing your blog in my sidebar.

    Patrick

  3. thx, as a friend of Todd and Erin I really appreciate all you are doing and saying. I will be praying for you and your journey

  4. You know what other trap we should avoid? Jealousy. I wish I had a fraction of the class you have. I love you Teri.

  5. I’m so glad this post was a bit helpful for you, Tina. It’s hard on everyone when someone we love is sick; I often say that the only way my cancer is “tolerable” is that it isn’t in my KIDS. Helplessness is a piece of the guilt, too, when we can’t fix what’s broken.
    I applaud all you do to help so many others, Tina. You’re a marvel! Rock on!

  6. Thanks Teri for sharing this. I know all to well the guilt. And it is debilitating. My oldest brother was diagnosed with Leukemia and was told he would have 12-18 months, and I cried of course. I was sitting in his home when he told me and I just wanted to get up and run. The guilt was so overwhelming. But right away, I realized I was crying because I just didn’t understand why God would leave me and want to take him. Well, my brother has beaten the odds. It has been over 3 years now and he is doing well! But I still have the guilt, and some days I can’t be with him. I have to sike myself up to be with him. And I am okay, unless he begins talking about it.

    My husband has a friend who lost his wife to breast cancer, and I tell you, when we see him, I crawl so deep inside myself, I can’t speak.

    Reading your post, reminds me it is OKAY that I survived. I worked hard to be here. I continue to work hard to be here. God has a reason for me to continue on this earth doing his work. Someday, when I meet him face to face, I will know why. For for today, I just have to live life to its fullest.

    Like you, I have shared my story. I have spoken at events. I call newly diagnosed women to help support them and just listen. I truly believe we must give back. We must help educate. We must support our survivors.

    Thank you Teri for what you do. Thank you for always laying it out of the line. Your words give insight to the ups and downs of a day with cancer. It gives hope to so many that cancer does not have to be a death sentence. We can live and function with cancer. And we can call ourselves ‘survivor’ and feel good about it!

    Sending love and prayers

    Tina Leary Detweiler


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