Summer Reading

The most illuminating book for my process so far

I’m recalling those days of summer reading. From the dank public library basement children’s section in northern Massachusetts to propping myself up with a book in my bed, in a tree, or on the back porch. The focus was different back then, needless to say. I read stories and about history and historical figures. I was Laura Ingalls Wilder obsessed and had an innate interest in physical handicaps, reading whatever I could that would take me into the worlds of those who had to struggle where I didn’t.

Today it’s different. I have a reading list for the first time in my adult life, spurred by my experiences with infertility and involuntary childlessness. This list is mostly filled with stories of those who have gone through some kind of life altering traumatic loss or plight. Seems I’m propelled to read whatever I can to take me into the worlds of those who have been forced to struggle in ways similar to those in which I have.

My list also includes many titles inferring some sort of insight and perspective on the workings of the brain and human emotions. My days of reading about others in history are gone, at least temporarily, my days of trying to learn about myself in the present and how that connects to that which is universal are in full swing.

Nothing helped me to do this more than Dr. Alan Wolfelt’s book, Reframing PTSD as Traumatic Grief.

I was led to Wolfelt by a fellow infertility survivor, picked this book (and a few others) out of his massive lineup, and sobbed from the relief brought by precious (and all too rare) validation the first time I read it.

The overall premise of the book, based on the thousands of hours Dr. Wolfelt has spent with the bereaved, is that grief is an injury, not an illness or disease. He proposes a crucial and overlooked perspective – that unprocessed and unmourned grief often manifests as PTSD. Throughout the book he returns to the idea that our modern understanding of grief lacks attention to its soul based nature, and that mourning, the outward expression of grief, is the key to healing.

De-medicalizing grief has become a major component of his life’s mission, as he believes that our clinical understanding of grief pathologizes normal experiences. He presents his companioning theory as an alternative to traditional therapeutic responses and models.

While this is a book technically written for caregivers and professionals, through it I was able to have a more solid understanding of my own experiences on multiple levels. It was mind blowing to read in print all I had figured out fumbling through the dark on my own. This book played a key role in proving the de-individualization of my experiences, so crucial for the child free not by choice infertility survivor whose recovery is mostly void of social support and acknowledgement, an established support system of any kind, and inclusion in the human conversation.

This is also an important book for the infertile community as the connection between multiple failed treatments and PTSD remains all too well hidden, never mentioned by the continuously budding fertility industry. One study found that close to half of its participants, all of whom had undergone failed fertility treatments, had diagnosable levels of PTSD (the rate of PTSD in the general population is approximately 8%). I myself started having panic attacks towards the end of my second year trying to conceive after our 5 failed rounds of IUI. The five rounds of IVF we did soon after and the grossly under rated drug side affects intensified my symptoms greatly. Some of my worst experiences were at the doctor’s office, where I should have been receiving this thing called patient care. Confronted in the all too inclusive waiting rooms not fit for the reality of the fertility industry’s substantial population of grief stricken traumatized patients by the Benedict Arnolds of the infertility community – those who brought their babies back for show and tell and those wanna be’s who overtly drooled over them desperately trying to fit in to planet parent regardless of any harm brought to others – I’d do anything to block them out. I’d sit facing the wall, put in my head phones and sing along, only to be met with blank stares and inferences of otherness from both patients and staff alike as I eventually admitted defeat and slunk to the bathroom or out to my car.

One year out of my final failed treatment I attended a weekend trauma workshop up at Kripalu in Stockbridge Mass, desperately hoping to attach some thread of universal knowledge to my experience. Not only was the trauma workshop traumatizing (go flipping figure, I write about it here and here), I left thinking there was an element missing. “There’s also much grief in what I went through”, I recalled musing, still well within my hazy shock and numbness phase. Not knowing about which avenue I should inquire, I was stuck. Is it the grief or the trauma, the trauma or the grief that needs my attention???? The beauty of this book is that it so intelligently marries both, just as they are in real life.

“I write many books about grief and mourning for laypeople because it’s my passionate belief that when they are suffering the aftermath of a loss, people in our mourning avoidant culture, especially, need help understanding that all thoughts and feelings they are experiencing inside are not only normal but necessary. They also need encouragement to take the second essential step of expressing those thoughts and feelings – in other words, mourning.” Dr. Alan Wolfelt

The first few chapters contain useful outlines and overviews as far as what is PTSD, symptoms of PTSD and normal grief, what they have in common and PTSD’s impact on the brain. Traumatic grief is proposed and presented as a form of complicated grief. Reading up on my experiences in a setting where they were not pathologized was both defining and informative.

In the wake of my experiences I often find that pat answers and trite labels no longer serve my perspectives. I appreciate that Dr. Wolfelt steers away from strict definitions of things such as traumatized grief, pointing out that “Teasing apart who may be considered traumatized by a loss event and who may not be is not at all a simple affair” and highlighting the truth that “Loss of any kind gives rise to a sometimes unpredictable but always complex array of grief symptoms that is likely impossible to objectively measure.” As many of us know first hand, in the post life altering traumatic loss world, shades of gray and nuance rule.

There are many useful nuggets in this book that stick with me, rearing their heads as little beacons of clarity as I make my way through. There are too many to list, but here are some of them:

He sees grief as “a response to an injury that affects all aspects of our being – physical, cognitive, social, emotional and spiritual.” Having felt at one time or another in my process deeply impacted on all of these levels, this was so helpful to read. Plus, walking around in this world with no visible injuries while engorged with a sense of being profoundly injured is no small feat. Clarity is always welcome.

The Evasion, Encounter, Reconciliation grief model presented gave me a sense of where I was as well as where I had been. I could look back and pinpoint the timing of my transition from Evasion (shock, numbness and denial) to Encounter (experience and expression of reality of the loss). At the time it was excruciating and tumultuous, having a name for it and having confirmation it was, in fact, a universal thing would have been nice, but hey better late than never. And while the transition from Encounter to Reconciliation (remembering the loss, developing new self identity) is worthy of at least one book in and of itself (in my humble opinion), I’m grateful to know what to call it, to have a language to acknowledge where I’ve been and where I might be headed.

“When we are in grief we naturally withdraw and our withdrawal allows for the transition from soul work to spirit work. According to the groundbreaking thinking of Carl Jung, ‘soul work’ is the downward movement of the psyche. It is the willingness to connect to that which is dark, deep and not necessarily pleasant. “Spirit work”, on the other hand, involves the upward, ascending movement of the psyche, it is during this period grievers find renewed meaning and joy in life.”  Not only did this help me appreciate my withdrawal, something that can often feel like a crippling failure, it also gives me some insight off and on as to where I am. When I am struggling with an aspect of my losses I ask myself if there’s soul work left to be done. On the brink of my spirit work, I’m able to recognize that and honor it for what it is too.

And, one final nugget for you:
“Limina is the Latin word for threshold, betwixt and between. When grievers are in liminal space, they are not busily and unthinkingly going about their daily lives. Neither are they living from a place of assuredness about their relationships and beliefs. Instead, they are unsettled. Both their mindless daily routines and their core beliefs have been shaken, forcing them to reconsider who they are, why they’re here, and what life means.”

So in case you had been wondering my dear readers, that’s what THAT shit is!

I could also probably write a random dissertation of all in this book that connects to the involuntarily childless infertility survivor experience. During my re-read I found myself yelling “Hello, infertility survivors!” on numerous occasions (spoiler alert – no one answered). So again, here are a few connective points:

Some factors that can contribute to complicated grief are: The griever’s access to and use of support systems, the griever’s participation in meaningful ceremonies, and losses that tend to be stigmatized. So do “out of order” deaths or injuries, especially those that involve children and when it’s unclear why an event happened or who is at fault. AHEM!!

“Any ‘support’ grievers receive that does not witness and accept them as they are but rather dictates what is right and wrong can contribute to complicated mourning.” WELCOME TO OUR WORLD.

“Traumatic grief often stems from an event that itself created multiple losses and stressors.” BINGO.

“There is for many traumatized grievers a profound lack of sense of direction or future purpose, particularly if the griever’s hopes, dreams, and plans for the future were invested heavily in people, places or things that were damaged or destroyed in the traumatic event.” PRETTY MUCH

I have also duly noted that the experience of infertility coupled with involuntary childlessness takes a stab at, if not downright annihilates, every level of Maslow’s hierarchy of needs: (from bottom to top) Physiological, Safety, Social, Esteem and Self Actualization. JUST SAYIN.

“…..our mourning avoidant culture invites people to carry pain and encourages them to live an inauthentic life……We become unconscious to much of our inner selves in adjusting to the world around us.” I think infertility survivors and the involuntary childless are particularly susceptible to this since we are part of a mourning avoidant, parent worshiping, “if you don’t have kids your pain and experiences are automatically less valid” culture.

Chapter 8 delves into the heart of the book, highlighting mourning as a path through healing. Dr. Wolfelt’s six central needs of mourning are covered, which include development of a new identity, the search for meaning and to receive ongoing support from others (hello infertility survivors!).

Chapter nine clarifies his companioning philosophy. Although it is gracefully titled “The companioning philosophy of grief care”, I’d have entitled it “How not to be a harmful dumbass in the presence of your traumatized and bereft loved ones you selfish morons.” So there’s probably at least a few fundamental reasons why I’m reviewing the book instead of writing it.

As bearing witness to another person’s pain is, I believe, one of the most important functions a human being can carry out, I wish this chapter were required reading for people with loved ones who have gone and/or are going through life altering traumatic losses (in other words, almost everyone). It covers the necessary basics of empathy (as opposed to sympathy), being present for someone else’s pain, and provides a clear list of tenants of companioning people in grief.

It is here his companioning philosophy is also outlined:

“The companioning model is anchored in a “teach me” perspective. Being a guide or expert assumes knowledge of another’s soul I cannot claim.”

“Companioning sees grief as normal and necessary, the traumatized griever himself as the only expert of his unique grief experience, and the counselor (whether professional or lay) as an empathetic companion.”

“The caregiver’s job is to urge expression and sharing of this internal struggle, and to respect that grief to a degree is a solo, internal activity.”

And of course my favorite:

Desire (from caregivers or people) to reestablish homeostasis in the griever are problematic because “a person’s life is forever changed by significant loss. We are transformed by grief and do not return to prior states of normal based on interventions by outside forces.”

Additional chapters cover the characteristics and ramifications of un-mourned loss, society’s contribution to this as well as the importance of the right support and what can go wrong in its absence. Catch up mourning is addressed and a model for mourning carried grief is provided as well.

He does list my favorite “fertile world problem” – empty nest, a predictable and well within the normal spectrum of life transition that stems from abundance and good fortune, entails a major shift in a relationship but not the loss of it and comes with scads of societal validation and oodles of social support as a non violent traumatic loss. To which my response was, of course, “Seriously??”

Ultimately though, Dr. Wolfelt’s de-patholigization of both grief and PTSD as well as the symptoms they share is welcome and empowering. I feel closer to and better about my own experiences having read it. And it’s important on a broader level as I believe as Dr. Wolfelt does, that “Supporting one another in grief can create a culture rich in self fulfillment and compassion.”

See Reframing PTSD as Traumatic Grief here.

14 thoughts on “Summer Reading

  1. OMG! I found this review incredibly helpful. I will probably buy the book now. I have read quite a lot of books on grief, grief support, healing and the whole ‘childless in a child orientated society’ thing. But one more is always helpful. Thank you.

    • Wolfelt’s books are a bit pricey but well worth it, I think. If you end up reading it, I’d be interested to hear your experience. There’s such little reflection and validation of our experience with people out in the world, what to do but read, right??

  2. I love “fertile world problem”! I could fill an entire book with examples of these! Thanks for the insightful book review! Will have to add that one to my reading list.

    • My play on “first world problem” – couldn’t resist. I noticed along the way, as it seems you did, that my concept of what connotates a problem has become notably different than that of the mainstream. Hmmmm:-)

  3. Funny, I was just reading an old post of yours earlier this morning wondering when your next one would be published and returning to find this. Holy shit, what a book. Thank you for going through it with us – what a great writeup and such astute (aka “yeah! yeah! fuck yeah!”) observations.
    * “walking around in this world with no visible injuries while engorged with a sense of being profoundly injured is no small feat.” – I too am yelling out “hello infertiles!”
    * “We are transformed by grief and do not return to prior states of normal” – exactly exactly exactly! AKA “new normal” is something those around us rarely want to deal with, or “I miss the old Aimee” as one person implied. Old Aimee is gone, this is what you get, deal with it or get out of the way.
    * “mourning avoidant” culture – no shit sherlock, this is such a perfect phrase for the world we live in.
    * and oh yeah, the “fertile world problems” – hot damn ain’t that the truth…I was just talking to my neighbor last night whose youngest is starting kindergarten and she’s got the challenge of “figuring out who she is” now that they’re in school. if i hadn’t held both her babies when they were practically newborn and didn’t love them to death i’d have walked away but yeah, definitely thinking, gee i wish that were my “problem”…

    thank you, again.

    • So glad I could provide you with the next ‘hit’!! I just love “mourning avoidant culture” – that’s Dr. Wolfelt’s phrase as is “we are transformed by grief and do not return to prior states of normal”. Love that one too and so wish it was in mainstream awareness.

      People’s lack of willingness (or ability, who knows?) to accept and even recognize the emergence of our new normals is so hurtful. I try to spend limited time around these people as being in their presence is not only draining but invites feelings of invisibility (as if we need more of that!) and not feeling good enough. Like you, I’ve had to take a deal with it approach too. I get that our loved ones need time to adjust and to grieve the person we once were, but in the end being a bystander is a much easier job than the one we’ve got.

  4. Thanks as always Sarah! xx As a lover of “black” humour & all the more so since surviving infertility…I totally LOLed at ““How not to be a harmful dumbass in the presence of your traumatized and bereft loved ones you selfish morons.” …this post and book review further supports me in what I think I have found to be the ‘new me’ post-‘you can’t be a mum/grandmother’ etc realisation…pretty sure I want to retrain to become a grief counsellor, specialising in infertility & unchosen childessness. There is such a HUGE gap in our society for this and as we know SO well, if you haven’t ‘walked in those moccasins’ baby, you usually have NFI what you’re on about, no matter how well trained you may be!?
    Thanks so much for your priceless support/mirror. Dez xxx

    • Is it arrogant to admit I LOLed at that one too? Oh well. My husband hid his amusement towards that line knowing that when he shows it it only feeds the fire…..Interested to hear about your possible future career path. It doesn’t come easy, I know. So important to have people like us to fill the gap you speak of. I had a wonderful counsellor through IF treatments who helped me immensely. She had gone through an incredible amount of treatments to get her children but when I was on the brink of involuntary childlessness I was met with disconnection and a perspective that was very one sided and uninformed.

  5. Thank you for your support to us for this topic. I need this information and I feel very happy to getting here only. I am very satisfied with your site and also I like your site it’s very interesting one.

    • Dear Advanced IVF Techniques,

      Gosh, you’re SO welcome! That you need this information, well, I could not agree more. The fertility industry sure does utterly whitewash the traumatic grief brought on by the plethora of its failed treatments, doesn’t it? That you’re willing to take responsibility for this gross over site makes me feel all warm and fuzzy inside. I’ll be waiting with baited breath to hear about how you plan to use the knowledge in Dr. Wolfelt’s book to create a more humane industry. Emotionally safe and respectful waiting rooms? A built in support system for those stopping treatments? And how ’bout some research on the emotional and mental health ramifications of failed treatments? Heavens, the possibilities are endless (as they generally are when an industry has gotten so many things so wrong)!!

      Best Regards,

      One of your childless patients

  6. Such a helpful review – thanks so much Sarah. Like you, I’ve read (and reviewed) a lot of books on grief and this does sound like a superb one. And I love your comment to the “Advanced IVF Techniques” too…. The number of women who write to me about the doctors waiting rooms… really… is that SUCH a leap of imagination?!? Jody x

    • Thanks Jody! If you ever read it let me know what you think. While I’m sure it’s not right for everyone, I found it helpful. And so validating, especially in terms of what I had sensed I needed and was not getting from other people.

      The automated IVF clinic spam mail really rubs me the wrong way. I feel our blogs are sacred spaces of sorts, not a highway for the traffic of marketing that which failed me. And yes, aside from the occasional sign requesting child age limits that are rarely enforced, the inappropriateness of most clinic waiting rooms (on the part of clinics and some secondary IF patients alike) is mind-blowing. My guess is it boils down in part to a subconscious reproductive hierarchy – that the feeling and needs of those with children automatically take precedence. Well, and business of course.

  7. Thank you so much for your blog. I’ve been on this journey trying to be a strong and sane support for my daughter who has had a number of unsuccessful IVF procedures and lost a baby mid-pregnancy. I am especially thankful for your Mom’s thoughts, as so few in my circle of friends “get it,” and seem intent on offering trite so-called solutions to my daughter’s traumatic grief and loss. I was able to access the book through an inter-library loan and found it wonderfully helpful. I hope you know that your honest sharing is helping others more than you will probably ever know.

    • So sorry for all of your daughter’s losses. Thanks for the reminder that the all too easily doled out platitudes and “advice” on this experience pierce our support systems (for those of us who are lucky enough to have one) too. In the midwest United States, where my Mom is originally from, the women her age are always talking about their “grands” and asking one another how many grands they have. Sigh….

      I appreciate you taking the time to comment. It brings me comfort to know that some parents who themselves are hurting too are standing by their children through the crisis of infertility. I know of too many people who have lost parts and aspects of their families due to infertility and involuntary childlessness and for what? And so many others keep “connection” with their families at the cost of not having their voices heard and included.

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