Don’t disappear from the pictures

Whenever I talk about why research for metastatic breast cancer is so important for me, I typically post this picture, which was obviously taken when I was just a wee one.

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When I have mentioned that my mom died of breast cancer and then I post that picture, it recently dawned on me: “Huh, I wonder if anyone seeing this picture thinks that she died when I was a baby, not when I was in the second grade.”  That’s what got me wondering and subsequently asking my dad, “Hey, are there any pictures of just me and mom?”

My dad could only find two pictures, and it wasn’t any posed pictures of mother and daughter, it was two stolen moments that my father, an amateur photographer, caught.   He tried to explain why and how this happened, “Well, she didn’t like to have her picture taken.”  For the first time in a very long time, I felt really mad at my mother.

Someone reading this might think, “Well, the 80s were different.  It’s not like nowadays where everyone has a camera phone and it’s selfies 24-7.”  My dad has been an amateur photographer since his 20s, and he usually had his camera nearby.  My dad is the guy with the camera.  He sure as heck brought it to family events.  My mother dodged the camera.  She scowled and protested at my dad when he tried to take more pictures.   My mother was well known for her camera avoidance.

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Ever the peace keeper, my dad’s response when I expressed disappointment via email regarding the lack of pictures of mother and daughter: “Memories can be sharper than images.”  She died when I was 7 years old.   I do not have memories of her – they are more like snippets.   Plus, the snippets I have of my mother are from when she was sick from cancer treatment, not as the mother she probably wished I remembered her as.  Oxygen tubing, hospital visits, wigs.

As a 33 year old woman, the thought of being mad at my mother is so foreign to me.   Like, real, justified adult anger at a very deceased woman.  I feel pissed at her for not getting over her hatred of being photographed and just sucked it up.  I wished she would have said to my dad, “Hey, grab the camera.  Take a picture of Lara and me.”  Nope, she didn’t do that.  She ducked and dodged my dad’s camera like he was a landmine she didn’t want to step on.

In her defense, she was sick for a long period of my life from ages 2 to 7, but I would have still cherished a picture of my mom hugging me, showing some sort of maternal affectionate for her only daughter.  Some tangible proof that she was here and she loved her daughter, a daughter she worried (according to a friend of hers) would also have breast cancer.  I wouldn’t have cared in the slightest if I had pictures of my mother when she was sick if I was in the picture, too.  Her illness was a part of our lives, but I imagine that’s not something she wanted my dad to capture.

When she disappeared from the pictures, she disappeared from the events that took place.   One of the snippets I remember from a family vacation we took the summer before she died took place at a go-kart place in Panama City Beach, Fla.  My brothers were each driving their own go-kart, and I was in a go-kart with my dad (since seven years old aren’t allowed to drive those things).  My mother stood off to the side, watching us and hanging out by the railing.  She wasn’t participating, just watching.  When I think about that memory, it makes me sad because I have wondered if she was just disappearing right then and there.  My mother disappeared from my memory, and now she’s been this abstract figure in my life, as tangible as a dream.

My plea to parents, and this goes to anyone really, don’t disappear from the pictures.  Who cares if you think your hair is frizzy or you have a “weird” smile or whatever hangup or lie that we tell ourselves, and don’t want to be in the pictures?  When you have children, forget all that and just get into that picture.  Smile.   If you are the one usually taking the picture, because as the photographer at events I know how easy that can happen, then hand the camera off to someone!  Strangers are usually cool if you ask them, “Hey, can  you take a picture?”

I’m not 100 percent sure why my mother avoided having pictures taken while she was sick.  Maybe given her hatred of the camera before cancer just meant that the hatred multiplied by 100 after her diagnosis?  Maybe she thought if she didn’t let my dad take pictures of her bald or with a horrible wig on or other hospital-related scenarios, that we wouldn’t have to remember a horrible time in our lives.  Guess what, we still do.  Whatever it was, she did a disservice to me, her youngest child.  I was robbed of my mother, and then my mother robbed me of the ability to have a precious keepsake of just her and me.

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Guilt

Last night I found out that a Twitter friend of mine, Jada, had died of metastatic breast cancer at the age of 35.  I stared at my screen – stunned.  Although her Tweets had shown a decline and nothing but bad news for her, it still felt like a punch to the gut to hear of her death.

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Jada is not the first #bcsm friend of mine to have died of breast cancer.   Jen Smith, who wrote the blog Living Legendary, died of metastatic breast cancer in 2013, leaving behind a young son Corbin.  In her interview with Lisa Bonchek Adams, another metastatic breast cancer blogger and advocate, Jen said:

I know society and the media have conditioned us to use the language “battle” against cancer, or in the “fight/war” against cancer. This is something that I’ve never really felt connected to. After all, what am I battling? A rogue cell in my own body, so in essence, I’m fighting myself. The best quote I’ve found that relates to how I feel is when Elizabeth Edwards died in 2010. Her friend said, “Elizabeth did not want people to say she lost her battle with cancer. The battle was about living a good life and that she won.”

The other frustrating thing I run in to is “So-and-so tried XYZ therapy and was stable for 10 years, why haven’t you done that one?” Then I explain that I tried XYZ and had progression in 3 months. I think getting people to truly understand that this is such an individualized disease is key. Just because XYZ works for one person doesn’t mean all people will respond the same way.

And, this is just me, personally, but I hate being referred to as “sick.” I’m not sick; I have a disease called metastatic breast cancer. If I was “sick” that would imply that I’m possibly contagious or that I’ll get better, neither of which are true.

When I hear about another death from metastatic breast cancer, not only do I feel sadness but I feel guilty.  Why them and not me?  What did I do that they didn’t do?  What did I have in my favor that they didn’t?  Survivor’s guilt, I believe is the term for this feeling.  Jada was 35, and I’m going to turn 34 in two months.   I followed her Twitter feed and often thought: This could have been me.

This still could be me.

You see, my guilt is not just confined to survivor’s guilt.  Maybe it’s my Catholic upbringing or the fact that breast cancer has brought out all the feeeeeels in me.  Perhaps both?

I have felt guilty that my two years of health issues have severely postponed plans to start a family (or realistically, completely cancelled them altogether).   The idea of having children with someone like me, someone who can go from healthy to incredibly ill with little to no warning, is enough for The Boyfriend to reconsider having a family.  The thought of raising a child or children by himself is too much.  (Yes, yes, I know – nobody’s future is guaranteed, and I have heard: “But you can get hit by a bus tomorrow,” but a tragic accident versus a prolonged illness are two different scenarios.)   The Boyfriend has every right to be scared, as his feelings are valid.

In his defense, I have wondered if I should have children and possibly leaving young children behind without a mother, too, like how I grew up.  I wish I could tell him that it’s going to be okay, and we’ll never ever have to deal with cancer again.  I can’t.  I don’t know that.

I have felt guilty that I no longer want to talk, interact or even be in the same room as my step-family, thus creating a lot of stress and pressure on my dad.  His life is centered around this family, and I accept that.  I just no longer want any of them in my life.  I did tell him that if he ever was sick and needed me, I’d be down there in a heartbeat, and I wouldn’t be a dick to the step-family.  I won’t be fake nice or phony.  I know that my refusal to see the step-family as my family will cause stress and tension in get togethers, but I chose my path and I intend to stay on it.  I don’t see any of the steps apologizing to me.

Going through breast cancer treatment made me re-establish priorities in my life, and when I realized that people who were supposed to be my “family,” didn’t care about me, I cut them out of my life.  If someone doesn’t care about what happens to me when I have cancer, I don’t care about them.

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I have felt guilty that I am not the pink ribbon loving, platitude spewing and survivor banner carrying woman who has had breast cancer.  I’m not that woman, and I often wonder if my refusal to play in the pink party has made others uncomfortable or downright afraid of me.  Initially after I was done with active treatment, I briefly flirted with the identity as a pink ribbon breast cancer survivor.  After learning the truth and reality of breast cancer and the pink ribbon, I walked the other way.  Ran, even.   That’s not the type of person I want to be after cancer.

(I do not fault anyone who wants to embrace the pink ribbon and the survivor label.  If it brings you peace and comfort, let it continue to do so.)

I have felt guilty that I haven’t become the Forever Changed woman who has had cancer.  I didn’t completely overhaul my diet and lifestyle.  Some individuals have changed their entire lives, and I’ve probably made a fraction of the changes.  Sure, I have started running and have pretty much cut alcohol from my life.  However, I couldn’t tolerate Tamoxifen and stopped after six months because the side effects were too much.  Every time I have come into contact with someone who takes Tamoxifen and also lives a BPA, paraben, chemical, sugar free life, I am overcome with guilt, feeling weak-willed.  I wish I was strong enough to have tolerated Tamoxifen or changed every aspect of my life. I think about my inability to take Tamoxifen often, often wondering if I doomed myself.  Then I feel guilty that I can put my loved ones through this again because I wasn’t strong enough.

Whenever someone I have made a connection with because of breast cancer dies from this disease, my heart hurts.  Jada was a beautiful woman, and her death just goes to show how much more work needs to be done.

RIP, Jada.Walt Whitman (1819–1892). Leaves of Grass. 1900.

166. O Me! O Life!

O ME! O life!… of the questions of these recurring;
Of the endless trains of the faithless—of cities fill’d with the foolish;
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew’d;
Of the poor results of all—of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest—with the rest me intertwined;
The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.

That you are here—that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.