Co – Participation

Actively engaging in the childless not by choice experience

“Do you have time to talk in person?  I have to ask you something.  Can’t really explain it via text.”

That piece of me that’s always waiting for the other shoe to drop, that piece of me cultivated and well primed by multiple failed fertility treatments and four years of actively trying to conceive, still lives on.  Duller and more in the shadows now, but still there.

I quickly made the time for my dear childhood friend, preparing myself for the intense at the very least.  

There are my experiences to contend with, and just weeks after our third failed IUI, her beloved husband of not even five years died suddenly.  So in this day and age of texting and facebooking, the “can we talk in person” request functions as a red alert of sorts.

When we spoke in person the subject at hand turned out to be beyond heartwarming.  “I’d like to acknowledge your loss but I’m not sure how.”  

Huh?

My friend Kelley Lynn has written a book, My Husband Is Not a Rainbow, The brutally awful, hilarious truth about love, life, grief and loss. 

At the end of her book she has compiled a thank you section and a remembrance section.  Those who donated to the publishing of the book can have the name or names of lost loved ones listed in the remembrance section, and I vaguely remember when making my contribution the fleeting thought of ‘that’s nice, but it doesn’t apply to me’.  Well, not so fast.

The experience of losing something that creates a hole as gaping and excruciating as if there had been a person there is a lonely road.  You constantly battle the void of names and faces and memories and live daily, hourly actually, with losses that others consider invalid. 

Yes, to have your life and self so brutally altered by that which never got to be is a lonely road indeed.  You get used to figuring out by yourself how to honor and mourn your losses.  You get used to doing it while most turn a blind, judgmental or perhaps an emotionally averse eye.  When you’re not encumbered with educating people that the grief of those of us who conceived children in our hearts is in fact a worthy and valid thing, you are often processing your losses and the multitudes of collateral damage that comes with being involuntary childless entirely on your own.  The absence of your experiences being reflected back to you in daily life is thunderous.

You get used to being on the outskirts of the grief community, which is already on the outskirts of this one dimensional happy obsessed society of ours that is in the quite unfortunate habit of exalting externally manufactured “positivity” while turning away from true feeling and authenticity.  The last thing you have the energy to do is elbow your way into the mainstream grief world.

My friend and I discussed the lack of an official name in the case of my loss and what to write instead.  Not only did my she extend a hand in that direction, she wanted to figure out how to educate people.  Where to list my blog and raise awareness.  It was as if a pellet of warmth released from the center of my heart area, permeating outward in all directions like traveling water colors.  

Since losing my children to infertility, and then losing parenthood and grandparenthood as well, I rarely get to experience this feeling around fellow humans.  When interacting with humans on a daily basis I commonly feel dull, disappointed, disconnected and sometimes violated.  The inevitable journey of down grading my expectations of basic human interaction is proving to be a long one.

I recently found myself enthralled when watching an episode of Kamau Bell’s United Shades of America (Season 3, Episode 4).  It highlighted people who live with physical disabilities and somewhat unexpectedly, it was there I was able to have my experiences reflected back to me in a sense.

I’m not necessarily advocating that involuntary childlessness be labeled a disability, but I just could not ignore the seemingly striking parallels of at least the themes our lives share with the physically disabled.

First, there are the shamelessly unrealistic portrayals of both physical disabilities and infertility/childlessness in Hollywood.  One of Kamau’s guests who breathes with the aid of a breathing apparatus hurled out a fierce and undeniable “suck it, Hollywood!”.  Though coming from a very different experience than she, I concur. 

People with physical disabilities have different opinions and feelings on the label “disabled” which at least for me is reminiscent of the various ways we in the involuntarily childless community define and debate our labels.  Some incorporate the term “disabled” more in their background, referring to themselves as a person with a disability, reminding me of the “redefining motherhood” and “I’m so much more than my childlessness” aspects of our community.  Others take the more realistic in your face approach, refusing to cast their un – asked for circumstances off to the side.  They claim their disability as it impacts most aspects of their daily life and thus seek integration over rationalization.  While I believe both ways of being and processing are valid, I much more identify with the later modus operandi, needless to say.

Other prevalent themes that resonated were 1) That as humans with experiences not of the mainstream majority, people with physical disabilities have important things to offer and teach, 2) Their activism is for the purpose of making their place in society relevant and, 3) They too come up against impenetrable walls of ignorance, for example the offering of a wheel chair to a deaf person.  “What can you do with that kind of ignorance?” the son of a deaf woman queried on being asked if his mom could read.

I don’t pretend to have a clue or to be enlightened in any way as to what the daily lives and challenges of being physically disabled in this world are like.  But hearing accounts of wisdom and world views from that angle of things, as an involuntarily childless infertility survivor I experienced multiple bells clanging.

And I wouldn’t be surprised if, in this day and age of advanced medical technology in our culture that’s submerged in the illusion that most things can be fixed, both the involuntarily childless and physical disability camps (some of whom are one in the same) are now dealing with an increased level of othering.

The people featured on the show had a luminously refreshing “you’ve got to accept all of me” attitude, something that could be a great model for involuntarily childless people.

Perhaps though the most resounding message Kamau’s guests had to deliver to society at large was this: It’s not just them (the physically disabled) “over there” – society needs to participate.

Ahh, yes.  Co-participation.  Simply defined as “To participate jointly with another or others.”  Something in which all privileged majorities seem to fall short.  And in regards to the very real experience of involuntary childlessness, co-participation is something that those who are not involuntarily childless must start doing. 

I’m reflecting on an experience I had about ten years back with a fellow flutist I met in a series of workshops I attended who happened to be blind.  We’ll call him John.  As far as my level of co-participation with John, I give myself a C-.  Heck, no actually.  More like a D+.  I made the effort to engage with John because I liked him – he was warm, funny and interesting.  I also noticed on some level his isolation and was miffed that so few people seemed to be making an effort to get to know him.  Beyond that though, I was a bona fide flop.

When he brought up the experience of losing his sight in his early twenties, I don’t think I asked any questions.  The conversation kind of died when instead I could have learned something had I bothered to be curious.  In his presence another fellow flutist and I contemplated potential ways that would allow him to participate in the group workshops more fully – yeah like as if two sighted bitches are going to think of something he hadn’t already.  Quite reminiscent of fertile people railing on and on about how to get pregnant or adopt, isn’t it?    

We did stop our clueless conspiring the moment he implied that “sometimes, you just have to deal with things as they are”.  If I could talk to my then self I’d whisper “Hey, Virginia – about five years down the road from now you’re going to get a hard ass kicking from that very same truth!”  However I later proceeded to overtly gush over his ability to guide me to the subway station instead of just rolling with the reality that if he lives in Manhattan as a blind person, he must have some kind of a functional skill set when it comes to getting around.  Duh.

I recall feeling at the time like John didn’t do much to make people around him feel comfortable.  Though my empathic capacities had some potential back then, clearly I hadn’t yet fully imbibed two very important truths: One, people who have to operate in ways different from the main stream, be it physically or otherwise, may not have the room to make others comfortable.  They may be inundated with a plethora of other and better things to do, oh like survive in a world that isn’t cut for them, for example.  Plus, it’s not their job.  And two, it IS my job as a human to co-participate with experiences that are different from and harder than mine.  It is not the job of the wounded to build the whole bridge.  And when one is willing to fully connect and empathize, it is much easier and more fruitful to function in the face of the unknown.

As I used to say in the early years of my transition from infertility to non parenthood – “if I stoop down to spoon feed every poor poor little emaciated emotional capacity that crosses my path, I myself will not heal.  And I will not become the person I can potentially become.”  

It is, after all, not my job to tidy up my childlessness, compensate for my emotional and spiritual wounds and create a fake alternate world view that fits in with the privileged majority.  Just like I needed to extend myself further into John’s experience, so do others in the face of involuntary childlessness.  Especially seeing as we make up about 20% of the population.

And that’s what was so beautiful about my interaction with my friend as she was drowning in the details of finishing up her first book.  We co-participated.  Perhaps a bit more natural between two people who have suffered life altering traumatic losses, both which in very different ways led to a lack of children, but still meaningful just the same.  The loss of my children to infertility is not accompanied by an owner’s manual.  I need humans to go through this along side of me, to process it with me.  

We hashed over the idea of putting my blog URL in the remembrance section.  I raised the point that I didn’t want to flank the name of someone’s lost loved one with my blog address, that just didn’t feel right.  We went back and forth on if this was the right forum in which to attempt the spread of awareness.  And we contemplated wording.  I finally threw out “How ‘bout ‘Sarah Chamberlin’s and Julio Velasquez’s unborn children’?”  And so it is.  

Ultimately, my friend took the time to approach me with the intention of inclusion and with the openness of not knowing.  With genuine curiosity as opposed to the desperate need for a trite answer that might make the discomfort go away.  And we figured it out together.

 

Just received my copy of My Husband Is Not a Rainbow yesterday and can’t wait to read it.

“Written in real time and told through poetry, journal entries, Facebook posts, grief counseling sessions and letters to her dead husband, ‘Rainbow’ will have you falling in love with love while simultaneously feeling validated in your own grief tsunami.”

Find the complete description and ordering info HERE.

12 thoughts on “Co – Participation

  1. I love this post. As I was reading it, warmed at the start because of the understanding of your friend, and her willingness to acknowledge and include your losses too, I was nodding along in agreement. I’m also part of a group of people who suffer from invisible pain, and I have friends who have other invisible illnesses, and I feel that they would also relate with so much of what you said here. But the words which got me the most, and which I am going to remember, are these: “It is not the job of the wounded to build the whole bridge.” Perfect!

  2. Thank you for sharing your thoughts and your perspective. This article really made me think. I absolutely love that your friend reached out to you and that you were able to come up with a way to honor your unborn children. Our childless not by choice tribe and those who support us are indeed amazing…

    • Thanks, Brandi. I agree, when support happens it’s wondrous. I was a little taken aback by the parallels I witnessed between my experiences and the perspectives of the physically disabled that were highlighted in the TV program. Things that make you go “hmmm”!

  3. I recently stumbled across your blog a couple weeks ago, and it’s been so validating. I was diagnosed with stage 4 Endometriosis two years ago, and the doctors told my husband and I we only had a 5% chance of conceiving on our own. 1.5 years later and not a single ounce of hope. In searching for blogs about infertility I often found many sugar-coated their experience. It always made me gag how often they would try to put a positive spin on it, or basically tried to enlighten other infertiles to the secret of their new found happiness. I love how raw and honest you are. I feel like your infertility blog is one I can finally relate to. You put all my jumbled up emotions into words. Thank you.

    • Hi Jennifer – it feels good to find other voices that fit your own, I know. Our experiences are hard enough to process, not seeing them reflected back to us makes it almost impossible. I’m sorry for your losses and what you’ve been through. There is much societal pressure out there to sugar coat, but we’ve already lost so much. So the truth of our experiences we get to keep, I feel. 4.5 years out of treatments and I’m just getting to the life rebuilding phase of things – during the first few years of grief I didn’t find the moving forward, creating a new life, plan B stuff to be all that relevant. It has its purpose, however we live in a society that is overly focused on the resurrection/rebound and likes to ignore the crash/death part of things. This can be very alienating during grief, especially since the crash/death part of things is where the deep, bare part of the soul lives. At least in my experience.

  4. Finally catching up on some blog reading, & found myself nodding as I read this. 🙂 I have found that, dealing with my own grief over pregnancy loss & infertility, I’ve found a whole new level of empathy for others’ pain & trauma of all kinds. I don’t pretend to always relate to or understand the details of their specific story(s) — but on a gut level, I find that pain is pain, & loss is loss, no matter what form it takes. So glad you have a friend who “gets” you like this, even though your stories are different!

    • Exactly, Loribeth! I’ve been following a similar trajectory. Not pretending to relate or understand is part of the wisdom I think. Our pain, among other things, has taught us what we don’t know.

  5. Ahhh, yes, finally getting around to reading this. It makes me sad that the simple idea of me wanting to acknowledge your loss in my book, took you for a loop as it is not the norm for people to do so. That makes me sad. The idea that acknowledging a loss different than our own or different than the society norms, is so rare. I think the way we talked it out together and figured out what was right and what felt good , was pretty damn awesome. And I loved that we came up with a wording about the loss that I feel is both educational and powerful, when seen in printed form. One last thing; the memorial wall list in the back of my book is quite lengthy, which , in itself, is powerful to see all those names listed back to back. I purposely put yours as the very last one, so its the last thing peoiple would see, and so that this fact might make them take an extra second, even subconsciously, to say “hmmm, one of these things is not like the other……”, and ponder the idea that there are different kinds of losses that arent always equally recognized or heard or met with compassion. I hope you love the book, Sarah. In addition to being acknowledged in the remembrance and thank you sections, you are mentioned in stories and as someone who has met MY loss with compassion, over and over again. So thank you.

    • Yeah, we are pretty damn awesome. Am cracking open your book tonight, finally. Just knowing that I can glance at our decided upon words at any time is a comfort. XO

  6. Dear Sarah – thank you so much for posting (everything that you post here), its been a huge help. And today I want to thank you very much for posting Kelley’s book. I downloaded a kindle version and took it on my summer holiday to Greece last month. What a beautiful, courageous and raw read. I realized when I started reading your posts here that it was the closest I’d felt to understanding my own grief and trusted that even though our losses were different anyone who supported you would very likely have written about grief in a way I would further understand myself. I loved Kelley’s book for the way in which she wrote so honestly (I wish for her as she wished for you) that we didn’t have to read and share our stores at all. Kelley is changing the world one mind at a time……. I didn’t know how to sum up my thoughts and have been thinking about it for 2 weeks. I was thinking about grief just today and how as a western world we truly have no idea how to help those in grief nor how to allow ourselves or others to grieve – I was thinking of these thoughts and of you here and Kelley and Don – it was just an ordinary day here in the UK and I was getting ready for work, it was raining heavily and I went upstairs to start getting ready for a shower when I walked into the bedroom for something and glanced out the window to see a beautiful rainbow, I smiled so wide and knew I would write something today and hoped it would reflect my gratitude to you and everyone sharing their grief, hardships and joy.

    • Thanks for the beautiful comment, Jane. I got a kick out of your rainbow sighting! Your thoughts reflect what my thoughts are on a lot of days. How any of us with parenthood losses deal with the lack of societal acknowledgement ON TOP OF society’s general aversion to grief is beyond me. I will be sure to share your comment with Kelley, and I know it’ll make her happy. Am so glad you’re on board here and thanks so much for sharing yourself.

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