still fractured

“We don’t want to admit to ourselves when we have been victimized because we don’t want to have to feel our vulnerability in the world. We want to go on pretending, just as children do, that we are invincible—that nothing can get us down, nothing can touch us…We not only ignore and blame victims but we expect them to recover from their adversity in record time. In our culture we are supposed to “get over” adversity and “move on,” and many people don’t have much tolerance or patience for those who don’t…And because our culture discourages people from acknowledging and/or talking about their suffering, many people can even feel embarrassed when they feel bad. It’s as if they’ve done something wrong—as if their personality or their character has failed them in some way.”
~ from When Did Victim Become a Bad Word? (2015, Psychology Today)

“we are fractured, but it’s only one page of our story”

I am so trying to remember those words, ones I heard a young woman speak recently.

I’ve not had many words to share beyond the surfacial week in pictures posts…too much inside my heart right now. Ten days ago I learned that while my vitrectomy surgery repaired the tears in my retina, it will never give me back my FULL eyesight. My right eye will most likely always be permanently fuzzy – like having a smudge across one’s glasses that you can never clean. I realized the other day that if I get something in my left eye while driving, I have to pull over because my right eye is not able to keep me safe on its own. While it is healing as it should, no one ever made it clear to me early on that I was fucked as far as true recovery goes, and that there would be no true cure for this idiopathic thing that happened to me.

My optometrist said I was very lucky that my doctor was willing to do the surgery that Friday night, as most take off early on Fridays and hospitals will tell you to wait until Monday – even with this dire of a situation. I was fortunate that i can see, but I am still just 43 years old and will never have clear vision in my right eye again. My left eye will now be taking on the heavier load of getting me through things like reading, from work to autobiographies to reading recipes. And some things we might not think about, that might seem minor to some, are no longer possible. Think about when you shave your armpits – when you do your right one, you actually use your right eye. Well, when I try to do mine, I might as well close my eyes as it’s completely blurry. If I have something on the right side of my face that needs a closer look in the bathroom mirror, well, I can’t.  And while I can deal with that, the harder part is the reading. By the end of the day I’ve noticed I just don’t have it in me to do anything requiring much focus – so curling up with a book or writing in my journal or on this blog is just not something I can do without a lot of effort. And it’s fucked up my mental a lot.

I asked my eye doc (my optometrist, not my surgeon, as the latter is the type that you know has no interest in getting to the emotional side of vision loss) if great stress affects these things and he said that while no one knows why these things happen, stress “doesn’t help”. Did my multiple rounds of IVF treatments, herniated disc, loss of our baby…did that accelerate what happened to my eye? If I were to ever revisit IVF, would it break another part of me, or go for the other eye?

I feel like my infertility and our miscarriage broke my entire body. My back. My eye. My insides. Giant pieces of my heart and soul.

Getting away has been a big focus for me. I’ve not been in escapist mode for over a decade, but right now leaving my current reality is tempting. We can’t physically move until adoption is complete, but we are looking at land to buy in the meantime if the situation is right…

Two weeks ago, we went to a small beach town on the Southern Oregon coast we’d been investigating as a place to build and while the lot was gorgeous, we did not feel like we were welcome in the town. We liked the builder a LOT and had a few nice moments on the beach and at the pub, but the apathy and cluelessness of the agents we encountered, the bullet shell casings, and the feeling that there was something just below the surface down there (and oh yeah, the Trump signs everywhere…) that could turn on us at any moment? Things just didn’t sit right for us to make a lifetime change down there.

Then last week we went to a different coastal town, just 90 minutes from home on the northwest corner, and it felt like old Portland. Working class with a streak of creative, where he and I could be US and where the air was cooler and there was more space to stretch our arms and SO much more quiet to hear ourselves think. The place called Portland where I grew up is not this town I live in now. This Portlandia we dwell in drifts further and further from feeling like home. Now it is more often than not crowded, pretentious, overpriced, and snippy. I’m not wholly dissing my hometown – just acknowledging its evolution into a Destination, when it used to be in a state where we’d have to tell folks it’s the one between Washington and California.

We checked out two properties, both with houses on them, to get a better idea of what acreage looks like out there, what the areas are like, etc. The first place was 16 acres and it was so quiet I could hear the blood coursing through my veins. A dilapidated barn leftover from its history as a homestead in the 1800s, a 100 year old apple orchard, a chicken coop, a green grassy fenced in front yard, and a house with floors made from reclaimed wood from a local gymnasium. But ultimately it was too far from civilization for this work-from-home gal, too far of a commute for a husband-who’d-work-in-town, and the house was nothing near what I could imagine leaving my home of 11 years for. And at this point in my life, I don’t feel like tearing out carpets, redoing everything, and living in a house that is not laid out the way I want it. I’ve already been doing that for over a decade and so with that, when we arrived at the second house which was closer into town and had some interesting outbuildings, the fact that it was built in 1930 was lost on me as it was ultimately a teardown with the layout indoors, the stanky carpeting, wood paneled walls, and a kitchen that would have to be completely ripped out. It didn’t help that we walked in and the agent wasn’t there, rather the recently widowed homeowner who had just lost her husband of 64 years and was watching strangers walk through her home as she prepared to check into a nursing home. It was so sad I just had to walk away, and afterwards ask my husband and I ate lunch, I said I just can’t go moving into someone else’s house. I know, someone lived in my house before but I’ve been here so long that I don’t want to leave unless we get what we want.

I know, first world problems right?

We have a great house here in Portland, and so if we decide to leave it will be for a plot of land that we will build our little cottage on in that area of Northwest Oregon. It will look exactly how we want it to look, it will allow us to feel a sense of community and me a way to work from home as I have been for the past 5 years, it will give us enough room to breathe – while not completely making us a slave to the land (we are too travel focused for that) – and it will start our next chapter the right way. Our way.

Going through all the shit we’ve gone through, especially this most recent event of losing part of my vision, has really caught my breath. I rarely read infertility blogs anymore – I can’t identify with most of them, and I find myself biting my tongue as I see posts about “lessons learned” that always involve optimistic women saying things like “I’m going to beat this!” (as if the amount of fight in you is going to determine if you get pregnant) and “I know this is going to work!” (I’m all for positive thinking but we all think it’s going to work in the beginning, unfortunately it only works for 30-35% of those who undergo IVF). I went into infertility treatments actually worried that both our adoption *and* IVF would work and come to fruition at the same time…never thinking that I would be defying the odds for donor egg and seeing six failures with nine embryos. And so because of that, I don’t even think realistically about family even though we have domestic adoption paperwork long completed, waiting for a birth mother to choose us. We are neither cynical nor optimistic…we’re just trying to go about our lives. 

And when I close my left eye and I can’t read what I’m typing here, I know that there are other priorities beyond spending tens of thousands more on the lottery ticket that is infertility treatment.

“Let’s stop making victim a dirty word. Let’s open our minds to the truth of the situation. There are people in this world who are victimized and they have a right to have that victimization recognized and affirmed. They have a right to feel their pain and anger and helplessness. They have a right to the time it takes for them to heal. They have the right to not be pushed to “get over it” or to be grateful it wasn’t worse. They have a right to not be further shamed because they aren’t getting over it or seeing the bright side on our timeline. They have a right to not deny their pain by saying, “There’s always a reason” when bad things happen. And perhaps most important, they have a right to our compassion, our care, and our kindness.”

When I saw the results of my breast thermography come back all clear, after massive heat and inflammation traveling through my body for the past 2 1/2 years (so much so that the reports that came in last year had recommended I immediately go in to a specialist because the results were so alarming… and the specialist of course was fucking clueless about thermography and refuse to give me a breast MRI even though I have a long and lengthy history of breast cancer on both sides of my family…only getting off of the hormones brought my body back to normal levels), I breathed one small sigh, but I didn’t jump up and down because there’s a lot of shit I’m still dealing with.

Today I look in the mirror at myself, and cannot look at my right eye. Turns out that my contacts are not making me farsighted, they are just trying so hard to help me see, that this is the best I can get as they try to overcompensate. I try not to cry when I get headaches, and I try not to cry when I wash my face in the morning and can’t look at anything on the right side of my face in the mirror up close, because it all turns to fuzz and that’s the way it will be. I already know it could be worse – but I don’t need to be told that, and it doesn’t mean I can’t grieve for this loss.

Like pregnancy loss, there is no “at least” with irreparable vision loss. I’ve actually heard that several times as people try to remind me that “at least you can still somewhat see” (while they’re seeing clearly). I’m very grateful for what I have, but nobody gets to point out the positive in vision loss. Nobody gets to point out the positive in miscarriage. Nobody gets to point out the positive when shit hits the fan, because it attempts the pain one is going through. And it is OKAY TO LET YOURSELF FEEL THE PAIN. It’s okay to admit that you’re going through hell.

People just need to love each other, support each other, and not minimize what they’re going through by “at least” statements to those who are hurting – especially when they’ve not walked in your shoes. I’m not saying that it’s not okay to see the good, but in this world there seems to be a prevalence of opinion that if you’re not positive, that if you allow yourself to grieve, that if you’re not strong, that if you break down and disappear for a while, that you’re defective. We are constantly applauded at a young age when we don’t show our feelings, when we are tough, when we “handle it so well”. Hell, I was watching a special on Diana’s death and they gushed over how William and Harry walked behind her casket and shook hands and looked at the flowers left for Diana, rather than be out there in tears as they grieved the loss of their mother.  It is twisted how the celebration of the Stiff Upper Lip applied even to our youngest…and it’s no wonder we battle internally and beat ourselves up when going through major life events and don’t “handle it”. Pages and pages of “inspirational quotes” laud women for not “playing the victim” after tragedy, ultimately telling them that if they are sidetracked by the pain.

This article in Psychology Today that I’ve been quoting hit the nail on the head, with my another favorite part below:

“When did the “victim” become a bad word? Merriam-Webster’s definition of victim is a person who has been attacked, injured, robbed, or killed by someone else or someone who has been harmed by an unpleasant event (such as illness or accident). There is nothing either stated or implied in the definition that indicates weakness. 

More important, when did being perceived as a victim become a bad thing? We see it time and time again. A reporter sticks her microphone in the face of a tornado victim who has just lost his house and all his possessions. “How are you feeling?” the reporter asks. “I’m doing OK. I’m grateful that we all got out alive. That’s the important thing.” 

While it is true that the important thing is that everyone got out alive, what about this man’s suffering? He just lost everything he owned—including all his photographs, his important records, his cherished memorabilia. He literally will have to start over. Why couldn’t he talk about that? 

Wouldn’t a more honest response to, “How are you doing” be: “I feel terrible. I just lost my house and everything I own. We lost all our photographs and things that have been in our family for years—things that are irreplaceable. I’m going to have to start all over from scratch.” Why didn’t this man tell the truth? Why couldn’t he tell us how he really felt instead of putting on a false front? Certainly he was grateful he and his family got out alive. But gratitude for your life doesn’t wipe out the pain and suffering anyone would experience from such a devastating loss. 

The man probably didn’t tell us how he really felt because he knew we didn’t really want to hear it. We wanted to hear him say he was OK and that he felt grateful. We didn’t want to hear about his pain and suffering because we didn’t want to feel bad. And we didn’t want to see him as a victim because that would remind us that we are all vulnerable—that we can also be a victim at any given time—or that, in fact, we have ourselves been a victim in the past.”

So I urge people to take a look at how they are responding to others’ pain. While many say things because they don’t want people to hurt, often it’s simultaneously said because it makes them uncomfortable to see pain. Their pain is not about you – it’s about them, and they deserve to be allowed to fully own that, sit in it, and deal with it however they want, with honesty and respect for the process that is grief.

So let’s leave out the “at least”.

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  One thought on “still fractured

  1. August 14, 2017 at 2:29 pm

    This is a fantastic piece. I’m so sorry about your vision; that is a tremendous loss. You truly are a warrior.

    Liked by 1 person

  2. mamajo23
    August 14, 2017 at 3:02 pm

    This was really thought provoking. We have such different approaches and perspectives but this blog really caused me to stop and reflect and hopefully grow. Thank you for that gift. Oh and f*ck all your shit luck. So brutal.

    Liked by 2 people

  3. whatwedontmama
    August 14, 2017 at 5:55 pm

    You’re absolutely right about so many things in this piece. The “at leasts” need to go out with the trash! I’m sorry for your vision loss; I can’t imagine how that feels. Sending you love and compassion as you navigate this new way of being in the world.

    Liked by 1 person

  4. August 14, 2017 at 9:43 pm

    YES! YES! YES! Pain is hard since you often can’t simply wear it on your sleeve or advertise it on a t-shirt (I’ve thought about it though!) Most people will never know you cannot see out of your right eye. Most people will not know about your journey through international adoption and infertility treatments. Or the many other losses you have faced in your life.

    My father lost the vision in one eye from a car accident then suffered a stroke about six years after that. Then Shane’s illness. I want to cure them. I want to make their hurt go away. Mostly, I want people to see them. To understand that some days are off days. That it is is a miracle that they are still here with us. It really should make you stop and think about those around you. What uphill battle have they waged or are waging? We all need to have a bit more compassion. A little less “suck it up” or “my pain is greater.” Pain is very intimate and part of us. Our pain is greatest because it is what we are battling with. It is our reality. I think the kindest thing that we can do for someone is to acknowledge their pain and validate it. Let them know they are seen.

    As with them, I wish I could make your pain go away. I wish I could give you a family, your eye sight, and heal your back. The best I can do is say that I see you, I know that this is hard and life has been pretty hard for awhile, life sucks, and life is very unfair.

    Liked by 1 person

  5. August 15, 2017 at 6:51 am

    “I feel like my infertility and our miscarriage broke my entire body. My back. My eye. My insides. Giant pieces of my heart and soul.”

    My god this speaks to me. No one ever talks about how IVF hurts people. It seems like all we see are the success strories. Thank you for writing this.

    Liked by 1 person

  6. August 15, 2017 at 8:18 am

    So sorry you’re dealing with yet another heartbreak. I’m sorry our culture tries to negate the valid feelings of pain and loss you’re experiencing. I’m so sorry that the world we live in got so fucked up.(((hugs)))

    Like

  7. August 15, 2017 at 11:13 am

    I don’t read many blogs these days, but I’m glad I looked into yours. This was such a deep and honest post. You are dealing with some challenges I’m lucky to know nothing of, having my full eyesight and three beautiful children I can’t imagine my life without. Wishing you all the best in the next chapter of your life. I hope you find the land of your dreams and make a loving adoptive home for some fortunate child.

    Liked by 1 person

  8. Betty
    August 15, 2017 at 1:41 pm

    Oh no that’s awful. I am sorry about the perma vision fuckery. It sounds insanely frustrating, not minor.
    “At least” = one of the most annoying phrases, ever. After my first loss I stupidly said it to myself, “At least I can get pregnant!” After my miscarriage when people said and that is just a NOPE. No “at least” anything.

    Liked by 1 person

  9. August 16, 2017 at 1:58 am

    I’m really sorry to hear about your right eye, that’s awful. You’re right about how people are admired for being “strong” after a tragedy. I’ve often thought that wrong too. It is better for people to grieve and not hold it all in.

    Like

  10. August 16, 2017 at 3:49 am

    Wonderful blog – thank you x

    Like

  11. August 16, 2017 at 4:55 am

    Hello, I’m so sorry about your eye. I live in fear of losing my glasses and carry around lots of pairs because I can’t see at all without them, so I can imagine how it would be if they told me there was nothing that could improve my vision. I can’t believe people trot out ‘at least’ about this…. screw that, I would be livid. Totally agree about these statements, they’re to be avoided at all cost.

    Liked by 1 person

  12. August 19, 2017 at 3:48 am

    I am so sorry to hear about your eye. I just cannot imagine what you are going through. It’s absolutely awful. Life is beyond fucking brutal.
    You’re post is 100% true. When I try and have an honest conversation with someone (sometimes even with friends) I often find my grief is ignored with another bloody miracle baby story..”my friend’s sister etc etc”. And really what I think we need is recognition of our agonising losses and the deep sadness we feel. Someone else’s happy ending doesn’t wipe out our heartache. And you’re so right – I almost laugh at the ‘if I just believe/I’m sticking at this/I can fight this’ mentality. Bla bla bla. So it’s willing yourself pregnant that works is it?! The rest of us must be willing it not to?
    I am in awe of your courage and honesty. Sending love to you. None of this stay strong bollocks – you are so entitled to grieve all of your losses. Wish I were nearby to bring over wine and just listen. X

    Liked by 1 person

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