Vulnernability with a Capital V

When I first started this blog it didn’t even have a name. It was originally hosted on my husband’s website because we started it solely as a means for him to update friends and family on how I was doing after my mastectomy. Once I started writing more though we no longer felt it should be on Bill’s website so we moved it over to our company website Holland Photo Arts, even though that obviously wasn’t a great fit either. Once I finally realized how much writing was helping me process things (probably around the one year post surgery mark) and planned to keep doing it for the foreseeable future, I figured it was time to name this baby and give her a proper home. A Second Chapter was born.

Only two short years ago I was password protecting emotional blog posts and now I’m posting half n.a.k.e.d photos. On the internet. For EVERYONE to see! Not sure which photos were more scary to put out there though actually – the half naked, scar ridden Frankenbelly ones that “require” a Not YouKnowWhat for Work notice, the nausea and headache ones that go to 11, the no make-up, dirty hair pics or the duck face ones (like the ones included here) from the first week after my most recent surgery. SO many fun, glamorous photos to pick from! You’re welcome.

But I’ve felt called, neigh compelled to share the good AND the gory so that others who are contemplating (or currently going through their own) breast surgeries, may know a little bit better what to expect. For better or for worse. Of course, everyone’s experiences will be different and I can only speak to mine, nor would I ever give advice on what type of surgery someone should have. I simply want to make people aware, if they’re not, that there are many, many options out there. You may not know that thanks to many doctors not giving prospective patients ALL of their options, no matter which of those options they prefer to do. That means it’s up to us to do our one research and soul searching based on our individual goals, desires, health, insurance, etc.

In a recent podcast he did on Breast Cancer Illness with breastcancer.org, one of the founding surgeons at the Center, said a whopping eighty two percent of breast reconstruction surgeries are implant based “whether or not the patient is a good candidate.” That’s in large part because they’re cheaper and easier for more surgeons to do (no micro-surgery required) and because of the excellent marketing efforts of the breast implant manufacturers. (The podcast is definitely worth a listen if you, like me, have been interested and concerned about #breastimplantillness.)

If another woman, like I was, is looking for in-depth and real world, real life information on tissue flap surgeries (especially if they’re also on the thinner side and have been told that tissue reconstruction not an option for them), helpful information can be quite difficult to find. I found very little out there other than from women who were good candidates for tissue transfers already OR in-process DIEP flap surgery photos. Which, I can guarantee you, I didn’t want to see. (Speaking of which, my surgeon took a photo of my belly cut open wide in the O/R. While I can’t really look at, if anyone wants to see it, let me know and maybe I’ll have Bill post it on the blog, with ample N.S.F.W and every other notification we can think of, that you may not want to look.)

Almost every single time I hit “publish” one one of these posts, I have a feeling of “WTF did I just do?” and for the next several hours, if not days, I “enjoy” a nice “vulnerability hangover”; a term coined by the amazing Brene Brown to describe the feelings of dread after being open, honest and forthcoming. Did I really just put photos of myself out into the world wide interwebs that could honestly be flagged as NSFW, like they were p0rn images? (“Surgery p0rn” is NOT a thing, right?! Shudder.) Well, good thing no one’s reading this blog anyway! Which of course brings its own set of weird feelings. Why am I writing and posting and (I feel I can legitimately use “literally” here) laying myself bare, if no one (that I may know of) is being helped by any of it? 

Oh, right. I’m being helped by it. That’s not to say this growth has been easy. There are many days when I feel quite broken, but thankfully, they are getting fewer and much further between.

When I decided to photographically document this round of surgeries, I didn’t really think I’d be putting many of the photos, if any of them, on the blog. They were likely going to be just for me. I knew they’d just feel so personal and soul baring, but relatively soon after my Stage Two, I decided that I had to push through any fear of what people were thinking of me as they read my heartfelt words and viewed my intimate photos.

I had to push through it for me. For me to get where I’m going on this particular journey, which will end, at some point. For me…so I could learn from these experiences and grow, without breaking, and be better for having them.

So, ahem, here I go again.

I’m embarrassed to say that in one of my lower moments when I was still considering having the prophylactic bi-lateral mastectomy (ie. having my perfectly likely healthy breasts cut off), I asked Bill “but what if this is what makes me “special”, what if this BRCA mutation is all I am?” 

How sick is that? 

How stupid is that? 

How sad is that? 

But, once I voiced that craziness out loud, I was finally able to hear and feel how silly and wrong that belief was. I realized it was just my ego trying to protect me. Especially once I was no longer a wedding photographer and didn’t know what I wanted to be, I (my ego) latched on to my BRCA situation and let it define me. (Some might think I still am given the subject matter of the majority of these blog posts, but that’s neither here nor there at this point.)

I found out in 2007 – when the then proprietary genetic testing still cost $3k, – which is to say very early on – that I was BRCA2 positive. My primary care doctor at the time suggested I be tested after learning about my mother passing away in 2001 at 62 from ovarian cancer. Weirdly, I was not surprised when a few months later when the genetic counselor sitting across from us (herself very new to this profession and clearly unprepared in delivering this kind of news) confirmed what I already knew. (Thankfully my insurance eventually covered the test, but only after my oncologist wrote a letter to them about my tiny family history.) I didn’t know anyone else who had this mutation then. No Christina Applegates or Angelina Jolies had come forward yet, if they even knew then. Given that scarcity, I let that “uniqueness” use my name. And my body. That belief, as perhaps silly as it was, wormed its way into my brain. And my heart.

But really am I so different for allowing that to happen? Sure, not everyone has a genetic mutation they allowed to define them, but I’d venture a guess that most everyone has something that they’re allowing to define them. Maybe it’s their bank account. Maybe it’s their job. Maybe it’s their family. Maybe it’s their educational degree. Or lack there of. But unless you’re the Buddha, you likely have something.

I decided I no longer wanted this whole BRCA thing to define me. Was that really all I was? Of course not. I wanted to be, according to Dr. Brown, a “whole hearted” human being in this lifetime. I wanted that deep sense of worthiness, love and belonging she spoke about in her acclaimed Ted Talk. But doing so meant I had to let go of who I think I should be to become who I want to be. Am I there yet? Um, well are you reading this blog? Then, no. But I am working on it. I will likely always be working on it.

I’ve been a in a cocoon the past couple of years since my world turned upside down and became something that was unrecognizable and something to be fearful of. When I was no longer a wedding photographer…when I didn’t know what I wanted to be…when my body seemed to betray me…wanting to keep me down – sick, wounded, feeling beyond repair. When my dear husband thought he’d almost lost me.

What I didn’t realize at those scary times, was that part of me had to die or pass away. A caterpillar doesn’t just turn into a beautiful butterfly without first undergoing an incredible, difficult and yes, ugly and sometimes gross, physical transformation.

When my first husband and I separated (and yes, I imagine some of you are hearing for the first time that I was previously married before Bill, but perhaps that’s a story for some other day), although it was one of the hardest things I had ever gone through, I emerged from it with my wings finally spread wide open. (In fact made my license plate at the time became MYWNGS, complete with the butterfly emblem that the VA Department of Transportation made available).

But while I was in it – the process of divorce; feeling like a complete and utter failure, embarrassed and shameful that I couldn’t make the marriage work – a marriage to my high school sweetheart of all things (those are the ones that are supposed to make it, right?!) – it was the worst. 

At the time, it felt possibly worse than losing my father when I was twenty one after a long illness. 

Maybe worse than knowing my mother was seriously ill and would eventually succumb to ovarian cancer when I was thirty-one. 

Because those were things I absolutely had no control over. But, my divorce when I was twenty-eight? That? That was on me.

It was definitely worse than the time in kindergarten when I had to go to the bathroom so bad, but for whatever reason, I was afraid to ask the teacher if I could go. (Painfully shy was what I heard very often at that age. Of course, hiding behind my Mom’s legs made it a little harder to hear.) The bathroom was in our class room so I didn’t even have to go far and maybe someone was already in there, but I didn’t ask. And you can probably figure out what happened next. I went home with a little plastic bag holding my wet underwear that the teacher quietly and graciously rinsed out for me. I got off the bus that day believing that there was NO WAY I would ever be able to go back to that class, let alone that school. 

I remember crying and begging my Mom to let me stay home (forever, please), but to no avail. I wish I could remember what she said, but I do know I was back at school the next day, feeling ashamed, embarrassed, scared…of what everyone else was thinking of me.

I wish I could say I realized that day that while I may have been the butt (ha ha) of some jokes, for the the most part, no one was giving me and Potty Gate a second thought. In fact, they were likely busy peeing their own pants. Did I mention this was kindergarten? Honestly, if you don’t pee your pants in kindergarten, did you ever really attend?

Anyway, back to my Divorce. It was the worst because of my (false) belief that somehow divorcing my husband meant that I was a failure, unworthy of that most basic necessity in life: Love.

And why, oh why, do we care so much what others think? They’re not the ones living our unique and special lives. Hell, it’s highly unlikely they give a rats ass about the intricacies of ours anyway. They’re busy living their own unique and special lives. As they should be.

But, I didn’t see it that way at the time and now in losing my breasts, I finally and completely, lost myself. THIS was definitely worse. This was NOT what I was expecting. If anything, I felt undergoing this surgery was a brave act of courage that would finally detonate the ticking time bomb I felt in my chest. In my head. And in my heart. I would finally be free of this insane “specialness” I no longer wanted. But I hadn’t known the tradeoff could be losing all sense of wholeness.

I, of course, can only speak to my experiences, but I’m willing to bet that there’s someone out there who can relate in some way and if by doing so makes them feel a little less alone in the world, it’s worth any vulnerability hangover I experience tomorrow. (And to be clear, it’s a 99.8% probability that I will. And that’s ok. I wouldn’t be human if I didn’t. Love that Brene Brown.)

Obviously these metamorphoses in my life have not been easy, but so much good has come out of some these difficult times, too. I can’t ignore that, and embrace these times for the growth they inevitable lead to. I try to remind myself of that shy little girl and speak up for myself. I miss my parents greatly, but losing them also made me realize at a young age how valuable and short life can be. Their marriage inspired my personal photo project (will share soon!) and I’m not sure that would have been the case if they were still alive. My divorce, of course, allowed my marriage to Bill, who shows me how to love a partner each and ever day. Now I just need to make sure I’m practicing loving myself each and every day.

Have I finally transformed into that beautiful butterfly again? Maybe not quite yet, but I know without a doubt, that I will eventually. Right now, it’s enough that I’m working through this phase and more than anything, I’m proud of myself for embarking on this difficult journey, even though I didn’t realize at the time ALL that meant. While I haven’t fully and joyfully embraced it all, I have accepted it as part of the process. And dear friendships have been made with amazing, strong, inspirational woman also going through a difficult phase that I likely never would have had otherwise.

I guess I’m not actually that interested in finding myself anymore…I’m more excited to find the person I was meant to be.