…and cancer trumps PTSD

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(((This post provides additional commentary regarding subject matter from the previous post.  Click here to start “at the beginning”))

Hopefully, since you read the previous post I can provide a bit of context and why I am choosing to drudge up ancient history.  Around late fall of last year as I was entering my final year of coursework, I was assaulted by a patient at work.  This re-traumatizing experience forced me to seek the help of my old therapist, whom I now visit with monthly.  In our initial session she was quite direct with me about her disappointment about my lack of self care.  This much-needed wake up call has resulted in a new exercise and nutrition regimen. Other steps taken included reaching out to others and taking time to de-stress.  I made a conscious effort to avoid isolating myself and reached out to others.  I got to get together with some coworkers a few times for lunch.  Finally, after the holidays, my sister and I decided to meet up at a local mall to shop.  This was our first “get together” after a much needed break.  The experience was truly serendipitous in a way I am unable to put into words.  It’s as if all old hurts had melted away and I was able to simply enjoy spending time with my sister.

While I would like to discuss this experience in greater length during a later post, my therapist shared some interesting perspective on healing trauma that is worth mentioning briefly.  In the aftermath of a splendid afternoon  with my sister that produced no “triggery” experiences,  I couldn’t help but wonder how the effects of past traumas could have melt away suddenly – even if for only one splendid day?   Keep in mind, I could write a novel on the intricacies of my own self-understanding (as you can see).  Despite my best efforts, it wasn’t the cognitive work or self-awareness that mattered.  Simple tasks like remaining present when a trigger hit, meditation, EMDR and daily exercise allowed my body to process old hurts, in the way my mind alone was unable to.  Reviewing insights from Bessel Van der Kolk’s book “The Body Keeps The Score”, in our session, my therapist provided interesting insights on healing trauma (2014).  His insight contradicts “conventional wisdom”, Bessel’s description of how healing happens, coincides my experience better than any other work I’ve ever written.  For those of you interested in “Cliff’s Notes” version of this book, what follows is an excerpt from a recent New York Times interview:

“Exposure therapy involves confronting patients over and over with what most haunts them, until they become desensitized to it…desensitization is not the same as healing…CBT seeks to alter behavior through a kind of Socratic dialogue…trauma has nothing whatsoever to do with cognition….the way to treat psychological trauma [is] not through the mind but through the body….paying careful attention to physiological states…” (Interlandi, 2014, p4)

In the aftermath of having experienced a serendipitious “healing” event, I have a renewed appreciation my therapist’s wisdom, of the critical importance of self-care.  As a perpetual caregiver, student, mother, and PTSD sufferer, attending to my own well-being is a vital.  Coming to terms with this diagnosis has meant accepting that interventions exist as a form of management and are not a cure.  Accepting the fact that there is not cure means acknowledging how my past traumas have changed me in ways which are unalterable.  Letting go of “what I was” has been an essential component in moving forward.

…and then life throws a curve-ball

In the months since this experience, life for me has been fairly unremarkable.  My kids are thriving, school is progressing and I’m wrapping up the final coursework necessary for my program. I am looking forward to a few promising internship opportunities, and have even started a new weight loss regimen.   In the midst of these events, I receive a call from my sister “out of the blue”.  She informs me she has breast cancer.  With a hysterectomy, oophorectomy and possible bilateral mastectomy in her near future, we are waiting the results of a genetic test which determines my risk for developing it.  My mother (a clinical cytogeneticist) thinks the results are probably negative in light of no family history of breast cancer.  However, there is no guarantee of this until we receive the results of my sister’s test.  In light of these recent events, I have developed a renewed appreciation of life as a gift to behold.  As a woman in today’s world who is “north of 40” and struggling to lose weight, I have issues with the qualities defining my “meat suit”.  In the aftermath of this news I suddenly realize these appearance-related insecurities are irrelevant to me now. Instead, I appreciate my good health, and the fact that this body has given birth to life beyond itself. Having said all this, my struggles with PTSD and family relationships are ongoing. Recent events have been triggery, yet I’ve managed them quietly.  In the hopes that I might find an appropriate place to begin “processing”,  I’m turning to this blog as a place to “do my dumping”…

And the dumping begins…

My immediate reaction to this news has been strangely reminiscent to other experiences of this variety. At two months of age my son went into cardiogenic shock  while at home with me.  He was later diagnosed with pulmonary atresia, and has endured five open heart surgeries thus far.  I was in shock during the ensuing events that unfolded when he was first diagnosed.  Doctors and nurses hovered over him, and struggled to keep him alive.   The idea that he require a series of surgical repairs was met with an outer-body response and complete numbness which prevented any emotionality from “peaking through”.  As I have later come to understand, this dissociative response (common to PTSD sufferers) is a double-edged sword.  As I like to put it, PTSD is a normal response to an abnormal situation.   Effective coping tools necessary when in the midst of “extreme situations” have allowed me to survive them.  At the same time, when these coping tools became permanent life-altering modes of adaptions to daily life, the price has become painfully huge.

As I reflect now, I’m still troubled by the fact that my emotions aren’t peaking through.  In light of the very real fact that my sister’s life is now “held in a delicate balance”,  due to a nasty and insipid disease, why is it I can’t allow myself to feel anything?  Fortunately I have a therapy appointment next week in which I can begin “processing”.   In the meantime, I need a place where I can “be me”.  I desire to “own my story” and claim my “role in it” in order to move forward.  I need a place, where I can speak those “unspoken thoughts” and share “unpleasant feelings” openly.  Since my family is VERY technologically challenged, I feel the chances they run across this blog highly unlikely.  In fact, I’m at peace with the idea, that I’m creating these posts for “nobody”, since I really get no traffic.  This brings me to the subject matter of the previous posting.  Events have unfolded that have resulted in the re-emergence of old misunderstandings that leave me in the midst of a troubling ethical dilemma.

“How to insert foot in mouth…”

Last week, my sister sent a group email with a link to an article titled “How not to say the wrong thing”.  Written by a breast cancer survivor and psychologist by the name of Susan Silk.  This Los Angeles Times article delineates her “Ring Theory” of support for those facing a crisis.  Referring to the image at the beginning of this post, this “Ring Theory” describes concentric circles of relationships surrounding the person at the center of a crisis:

“Draw a circle.  This is the center ring.  In it put the name of the person at the center of the current trauma…Now draw a larger circle around the first one.  In that ring put the name of the person next closest to the trauma…In each larger ring put the next closet people…” (Silk & Goldman, 2013).

While viewing this ring, it is important to remember that the person in the center requires comfort and support from loved ones to endure the oncoming crisis.   In order to provide the support a sufferer needs, everyone associated with this “crisis sufferer” needs to be aware of what they bring to the table in interactions with that individual.   Providing comfort and support, means listening to this sufferer while they dump on others.  This might mean listening to the sufferer discuss their current “life is unfair…why me” (Silk, & Goldman, 2013), moanings, while providing an empathic “I’m sorry this must be hard for you” (Silk & Goldman, 2013) response.  Supporters need to be aware of their needs to dump, and avoid doing so in the sufferers presence.  Bitching and moaning, rather than offering comfort, while with a sufferer means they need to utilize precious psychological resources to comfort you.  Susan silk describes this experience in the next quote:

“When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan’s colleagues.  She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so.  Her colleagues response?  ‘this isn’t just about you’…’It’s not?’ Susan wondered. ‘My breast cancer is not about me? Its about you?'” (Silk & Goldman, 2013).

As the above quote implies we make another person’s crisis ‘about us’ when we dump upon them and share our reactions to their trauma and expect them to comfort us.  For example, in the aftermath of my own trauma recovery process, I remember having to console my sister and parents much of the time. As I described in the previous post, while overlooking my own emotional needs I provided the comfort they needed as revelations pertaining to past traumas came to light.  This resulted in a disturbing turn of events in which the sufferer (me) felt it necessary to comfort others at a critical turning point in my own recovery & healing.  Instead of “Comfort IN and Dump OUT”, it was Dump IN and Comfort OUT. 

“When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help.  Listening is more helpful than talking.  But if you open your mouth, ask yourself if what you are about to say is likely to provide comfort.  If it isn’t, don’t say it.” (Silk & Goldman, 2013).

a re-emergence of old misunderstandings…

As I stated earlier, the above article was included in a link to my sister who provided the above article link to me in an email a few days ago.  In it she included the following comment:  “…I wish I had read a long time ago in ministering to friends/family who are in the midst of a trial. It talks about having circles or rings around the person in the center of the trial and to be mindful of how we speak to those affected by the trial. Very insightful.”

With the benefit of clarity, I can see my sister’s sharing of this article comes from a place of self-reflection and desire to assert her own needs at this time.  I appreciate her ability to communicate her needs in this respect.  However, when first receiving this email, it caused an old familiar twinge of anxiety as I was reminded me of our history.   I couldn’t help but wonder in frustration why “The Man Upstairs” was doing this to me?  How could it be, that I’m expected to be there for my sister in a “Ring Theory” fashion, when she failed to do so with me during my PTSD recovery?  This whole expectation wreaked of a hypocrisy which infuriated me.  Since I received this email over the weekend, I was “jet lagged” when receiving it.  Working three 12-hour weekend night shifts back-to-back, I responded only briefly.  In retrospect, I should have responded when I wasn’t tired, I’m afraid I dumped when I should have consoled:

“Thx for article.  Throughout my own trauma recovery, the sentiments from this article succinctly describe my own needs.  I regret I was unable to effectively state this need at the time….it was hard at at first to witness M&D reflect empathetically on what you had to go through…that old regret popped up in which I would have wanted the same from them.”

Her response to this email was the following:  “I am sorry that the way M&D are responding to my cancer is difficult for you. I’m having major surgery in 4 days….It is the opposite of helpful for me to know any information as it relates to your emotions….I would appreciate you talking to someone else about things…Like the article said ‘comfort in, dump out’. I hope you get the help that you need.”  

While her response shows an amount of understanding, it still produced some negative emotions. I was impressed with how effective she was at asserting her needs.  As a result, I wonder about whether  I handled things correctly throughout the last five years of trauma recovery?  At a critical point during the process, I remember a visit with my family about 3-4 years ago.  After a weekend of the same ongoing triggery familial dynamics, I stated my frustrations honestly to them.  I made it clear that I couldn’t deal with this any more and “maybe we should cut off contact”.  At the time, this reaction was a logical assessment of matters in light of how my relationship with them provided the greatest difficulties.  Additionally, the emotions contained in this statement reflected the burdens of having to provide comfort to them, while I was trying to get better.   Their failure to provide a comforting presence as Silk describes in her Ring Theory created a huge burden, in which their presence was more hurtful than helpful.  Nonetheless, aware that this may be the PTSD talking, I told myself this was a harsh and irrational decision.  I was left to contend with their anger, and made to feel I should do whatever possible to maintain and heal these relationships.  In the process, I’ve had to settle for something less than the “Comfort in, Dump out” expectations my sister describes.  Throughout this journey, I’ve had to tend to my family’s processing of my traumas.  I’ve learned to let go of the expectation that they can be anything other than what they are now.  The process has been quite wearisome.  I’m left with lots of questions….

While I ‘did right’ by my family, has this been at the expense of my own personal well-being?   After all, I can’t extricate me from the triggery effects of our relationship.  Since they have asserted repeatedly that “they cannot validate me”, and will not respect my own needs in a “comfort IN and dump OUT” since, what do I do?   What does “being there” for my sister mean to me at this time, and am I indeed capable?  Should I jump in and attend to her needs throughout this healing process?  Or, am I wrong in allowing others to step in while I focus on myself.? After all, if the “Comfort IN and Dump OUT” rule is to be in effect, I feel all individuals should abide by it, not just me.  As much as it pains me to say this, maybe I need to reserve my mental powers of comfort for myself, since my family isn’t effective in this regard.  

I am still struggling with the above questions, but did receive a comforting email from my mother moments ago in which she stated the following: “She added you to the conversation…because she wanted you to also see the article that Dorene wished she had know of long ago (when you were in need).  Effectively it is an apology from Dorene (and me) for not realizing the depth of your grief…”  In a phone conversation later that day, I was reassured that Dorene has many people to help her and that I need to continue living my life.  As she noted focusing on my well-being is always a critical component of daily life for me.

Does Cancer Trump PTSD???

Before concluding, I hope to explain the meaning underlying the title of this blog.  It isn’t about a childish “my hurt is bigger than your hurt” conversation in which I compare my crises with my sisters. Instead I can’t help but note how mental illness elicits a very different reaction than physical ailments do.  For example, when I’ve had to discuss with somebody my sister’s diagnosis, I experience a  genuine and compassionate response.  In contrast, the PTSD diagnosis feels like a cross to bear, as a source of stigma.  For this reason, I try not to discuss it with others.  When the subject comes up, the responses are highly varied and reflective of an individual’s preconceived notions.  It is for this reason, as a useful counterpoint to the above insight from Susan Silk’s I’m including the following quote from Jamie Berube, who has written an article titled “10 Things You Should Never Say to Someone with a Mental Illness”.  If you click on the quote below, it will take you to the article.  I also found a useful video by Marriage and Family Therapist Katie Morton.

“One of my fears in talking about my mental health condition is knowing that somebody might treat me differently because of it.  The thought of someone interacting with me in a way that was shaped by their own personal prejudices…is depressing…the words we choose to use also perpetuate…toxic stigmas about mental health issues…For this reason its crucial to educate yourself about what things to say or not say…” (Berube, J., 2014).

References

Berube, J.  (2014, August, 12).  10 things you should never say to someone with a mental illness.  Retrieved from:  http://thoughtcatalog.com/jamie-berube/2014/08/10-things-you-should-never-say-to-someone-with-a-mental-illness/
interlandi, J. (2014, May, 22) A revolutionary approach to treating PTSD. New York Times Magazine.  Retrieved from: http://www.nytimes.com/2014/05/25/magazine/a-revolutionary-approach-to-treating-ptsd.html
Silk, S. & Goldman, B (2013, April, 7). How not to say the wrong thing. Retrieved from: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Suggestions for Further Reading….

Van der Kolk, B. A. (2014). The body keeps the score. New York City: Viking.

 

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