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Sunday, February 28, 2016

The choices we make

I've been processing a lot in my dreams recently. Following a roller coaster of a week, with people waffling on the medical care (short answer to the long story is I haven't undergone surgery despite constant warnings it was happening. Apparently I'm healing and they'd rather not cut), Grey having an excellent first interview with job option #1 and asked to a more formal interview with job #2 (aka dream job) after hearing nothing for about 3 days, daycare options being completely up in the air and work drama involving a member of the lab who is struggling with her own shit (E's been great about letting me come into her office, close the door and just taking a moment to breathe), I've been spent on a lot of levels.

All the while thinking and reflecting. Thinking about how others see the world, which still blows my mind on even the best of days, and also on what is considered socially acceptable. And what happens when we break the rules.

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On Friday, Mel posted a question about chooses. It was interesting to mark the timing of this question as I've been thinking a lot about this and the options we are facing. More interesting was the comments section. People clearly choosing freedom over imprisonment, but what struck me was some focused on the assumption they knew their friends and family would ultimately forgive them for their decision to be free. And it left me thinking "but what if they didn't?" Change the offense to something more dire, where your choice of freedom meant that your loved ones would suffer and/or die? Hence they would hate you because they feared you. And though you were technically free, able to come and go as you please, you were forever separated from all you knew, shunned for something that wasn't your fault. Would you still chose your "freedom," even though you actually lived in a world of imprisonment? Where as if you chose a lifetime of being physically confined, but were free in the sense that these same people were now safe and living full lives. Where they could love you for your sacrifice?

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Friday was a very good day for Grey. Two weeks after the shitty conversation where his previous employer blindsided him by announcing things weren't working out (despite repeated requests for a performance review and them lying to him that all was fine while avoiding his requests), he spent the day meeting with members of a team who were excited about the work they do and love thinking on their feet. This position would be a good fit for him with a path forward (completely opposite of his previous position) and it's been good to see him so excited.

Later in the evening, we began a candid conversation about being true to yourself. And about how others' perception of you can completely impact that imagine. Grey talked about how with his previous employer he began to wonder if something was inherently wrong with him. His attempts to bond with co-workers had been continuously rebuffed and he was attacked with catty comments constantly. They basically ran him down. It's only now that he's on the other side of it that he's able to see that those comments and attitudes really reflect on how much these people hate themselves, but at the time it was literally destroying him. And it makes me so angry because that ostracism was completely unnecessary. A sign of a toxic culture fueled by those who are too fearful to confront themselves and address why they are so unhappy in life.

This past weekend has been spent strategizing to make sure this never happens again. To lay a foundation so that our family can protect one another and those we love from stuff like this. We've already got some of this foundation in play, which has been apparent through the love and support we've received from our network (and thank you to all of you who have reached out and been supportive during this time. You've all been amazing in ways that we can't begin to thank you for), but we need to foster this internally too.

Still, I'm angry about the ostracism. The self-doubt that manifests from those who chose to ostracize.

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Grey and I are in the middle of season 2 for Masters of Sex, which has been interesting both for the historical perceptive as well as providing an interesting commentary for modern-day science. It was scenes from a recent episode, where one of the characters confronts a choice about their healthcare options and an ultimate decision to stop, that really has been on my mind.

I won't get into specific here, but I will draw on parallels I've witnessed during my own interactions with the public regarding cancer. Specifically when the diagnosis is terminal.

There's a fear people have of "giving up." Stopping treatment altogether and accepting there's nothing more medically that will be done. Often the gut reaction from family and loved ones is anger and panic. After all, why would you not fight for your life? After all, there's still a chance as long as you keep fighting and refuse to let this disease win.

But what isn't well accepted is that this decision to undergo treatment after treatment is a form of prison. Instead of bars and chains, there's IVs and needles. There's days of recovering from the side effects from chemo and radiation (both of which are poisons that are meant to kill cancer cells, but also kill healthy cells too). And all that fighting is meant to buy you weeks, sometimes days. But though you gain that time being physically alive, you lose in actually living.

And yet, one thing that is known within the cancer community is that patients will often continue treatments simply for the peace-of-mind of loved ones. That they will endure hardships and discomforts solely to make others happy. There's been more discussion about this, with a push for family education about palatable care and pushing quality of life. Hard conversations with lots of emotions, usually driven by those who struggle with making peace and saying good-bye.

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The bow on all these thoughts was an email from Pamela,  alerting me to a repurposed blog post about why we don't talk about infertility. I've been thinking a lot about this topic over the past few years as there's still a lot of discomfort from others about my continual connection with this community. So many truly want me to put this period behind me and pretend that it was just a bad dream.

And yet, I can't. I can't because of how much infertility changed me. I can't because my diagnosis resulted in my whole world burning down around me, resulting in a pile of ashes that so many feared so greatly. There was rebirth that came from this experience. Rebirth that has become a foundation for this new journey ahead.

Contrary to what so many want to believe, the Beats are not the reason that this healing took place. They've helped (I'd be lying if I didn't acknowledge that) and have been such amazing lights in my life, but healing has come through lots of self-reflection, continual exploration into some dark corners and learning how to accept who I am.

Part of this healing also meant living through ostracism. Being judged by others who, both those I've never met (and never care to) as well as those that I loved deeply. It's painful to be shunned on such a deep level and there were moments where I wondered if it would be better to simply disappear. Yet, after living through all of that, it's clear that once again we have to temper our decisions on how to live. That there will always be those who judge freely and bully. That their actions usually have so much less to do with those they attack and more about how they are feeling about themselves.

So I chose to stay. Drawing on the support from this community as I continue to heal. Even though I know that it makes so many around me very uncomfortable. Because doing otherwise was killing me. And it's a prison I'm not willing to live in.


7 comments:

  1. I am grateful that our paths crossed and that we remain connected, deeply, by our desire to learn, to inform and to be a bridge for those struggling to make sense of the complexities that life throws our way. Much love to you for your willingness to hear and validate the voices of women who ended up on a different path.

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  2. What a deep and interesting post. You raise so many provoking points and yet I feel like you have southore to say. The parallel between cancer treatments in a terminal situation and prison is an interesting one. I will think about that since I recently lived through that situation (kind of).

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  3. To continue the cancer/infertility connection (although I suppose it's probably true of any disease with a poor/terminal diagnosis) I've actually heard a fair bit about people whose supposed friends/family do a disappearing act on them while they are ill or in cancer treatment. Because they feel awkward and don't know how to handle it, which is something I think happens A LOT with infertility as well. Which is why people come back out of the woodwork when it's all over. It's not that they didn't like you or want you to get better/have a baby, they just didn't know how to deal with the uncomfortableness of seeing you through it. I don't have a lot of sympathy for those people, since they're fair weather friends, but we can't control the reactions of others I guess. You just have to make your choice whether to accept them again in your life afterwards.

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  4. This post is so amazing. I am so glad that you decided to stay...I guess people might see staying as choosing to stay in the mire of an unpleasant time, but that's assuming that infertility is an isolated event and not something that changes you, forever. You have wisdom and experience and the ripple effects of infertility continue on in your life--maybe not with active treatment but in grief and loss and family relationships and how your relationships have changed due to infertility and how it colors all your decisions. I am sorry for all the ostracizing...I don't understand how adult humans can be such bullies. I hope that this new opportunity is great for Grey and he gets a new culture to work in that is collaborative and friendly, not backbiting and isolating. I wish that infertility didn't result in ostracization, but it does, and I think that gives people more empathy for situations like people going through life-threatening illness or other life crises. I am hopeful for new beginnings for you both, and I really enjoyed this post.

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  5. What a thought-provoking post, in so many spheres.

    I once worked in a toxic place, and I left knowing that I could not remain true to myself and stay there. I had to choose me or the place. I chose me, though it took longer than it should have.

    I recently read Being Mortal for book club, by a physician on end-of-life issues. I hadn't though of it through the choices we make in infertility, but it certainly fits. We can't focus solely on the quantity without eventually sacrificing quality.

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  6. Great post - it's really four or five in one!

    " ... a lot of discomfort from others about my continual connection with this community ..." I find this really strange. Because, after all, aren't you the only person whose opinion really matters in this? I'm surprised that others might be uncomfortable with it, as it has nothing to do with them! Argh. I think we stay in this community for a whole range of reasons - I mean, look at me - almost 15 years since my first loss, and still online!

    I haven't really commented on the freedom or imprisonment debate. I always find these things so hard to consider, as individual circumstances are critical to the decision.

    I'm so glad you and Grey are talking about being true to yourself. I wish my husband and I had talked about this - really talked - a long time ago. I suspect we both might have taken different paths than the ones we're on now. I'm trying to be true to myself now - but financial considerations get in the way.

    Ah yes, the issues of "giving up." Those of us with no children certainly have had to face those issues. And, in the face of difficult diagnoses, my sisters and I had to make these decisions for my mother over the last 18 months too. None of it is easy. Of course, I don't know how I'd feel if my husband or a sister or dear friend took this decision. But I hope that I'd try at least to put myself in their situation, to try and understand their decisions. My only concern, after seeing my mother's last days, is that palliative care is all very well ... but it needs to be done properly.

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  7. I do think that prisons can come in many different forms, and that you found a lot of them in this post. You got the heart of Chickie's question: your family wouldn't forgive you. You'd be all alone in the world, left to find your way amongst a world of people who hate you, or you could be in prison. But no, your family would not stand by your side. It really was hard for me to wrap my brain around her question: be "free" but have everyone I love hate me or be imprisoned but be able to see those whom I love once a week?

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