When Vanessa and Christina and I were little, we would sometimes play “fashion shoot.”

To be specific, Vanessa was my always-willing model, and occasionally Christina would succumb to my oldest-sister domineering and also play along with us.

Circa 1992(?), I present to you model Vanessa (at about age 11), with Christina (about 9 years old) assisting me in outfits, hair, styling and backdrops (she would likely say I should have to claim all that as my own, since I just bossed her around), and poses and photographs by me (about 12 years old).

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I was reminded of those younger days, as the same scenario has played out recently. Starting at the end of last year, as the effects of her stage 4 brain mets really became apparent, Vanessa has expressed a lot of interest in documenting her outfit/hair/makeup/jewelry on those days she feels particularly well dressed. Sometimes she takes her own pictures. Sometimes she requests Billy to, and Billy readily obliges in taking the picture Vanessa sets up, usually of her standing head on in front of different walls in their house.

The result is gems like these, which, despite sometimes not necessarily being in focus or particularly flattering, Vanessa posts all over facebook to proudly showcase every detail:

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However, this one particular February day, Billy was out running errands and I was working at their house. I watched V moving furniture out of the way to clear some wall space (she likes to have a solid background for these pics). I realized what she was doing and offered my assistance as the photographer, and she allowed me to do it. In an effort to produce some more flattering pictures than the usual ones, I spontaneously decided to approach the “shoot” as my old “fashion director” self of childhood.

I first zoomed in on each detail she requested I capture (including her 2 pairs of earrings in the same hole, check out that creativity!):

Then she got herself situated, as I sneakily took an un-posed shot, which ended up being one of my favorite pictures from this day. I think I like it because I can almost pretend she is “normal” there.

Then finally, we took something like 50 pictures of Vanessa, against that brown wall in a corner of her living room. I tried directing her body into more dynamic poses, and having her tilt things this way and that… sometimes just to counter the natural lean (falling over!) her body does on its own these days. I’m certainly no professional, but I took a completely on-the-fly, no-idea-what-I’m-doing but very sincere swing at it. In the end, I actually coaxed some normalish smiles out of Vaness, and I think (HOPE) she felt truly beautiful as we looked through the results on her camera’s screen a little bit later in the day.

When she saved the pictures I took that day to her computer, she named the folder “glamour shots”. This makes me insanely happy. We did have fun taking them, too:

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That tiny beautiful moment that day illustrates a truth I believe: Life is beautiful.

Another truth, though, is this: Cancer is ugly. Really, really, super, horribly, awfully ugly.

I believe that being able to see the beauty in Vanessa’s story is such a hopeful, helpful skill and practice. I am glad that I am able to look past the ugly to find purpose and lessons and beauty. I truly do see that. But, seeing the beauty doesn’t take away the ugly parts, or cover them up even. I don’t WANT to cover up or forget the painful and hard parts of Vanessa’s story, nor bury them in a heaping pile of “inspiration”.

Vanessa’s struggles, and our struggles, are a real part of her story, too. I am so sad and angry that this is happening to Vanessa. I mourn the future Vanessa will not get. I hate cancer and what it has done to my sister, what it has taken from her and all of us who love her. I wistfully think about what could have been, should have been if the world were fair. In my darker moments, I am jealous of people who “get” to “keep” their loved ones to a ripe old age. I am frequently sob-the-whole-way-home-from-her-house sad, and pound-away-at-the-keyboard-writing-for-hours mad. I wonder what Vanessa 1.0 would think about Vanessa Now.0 and the life she leads, the future she faces. I miss MY Vanessa, the one that wasn’t well-known, or interviewed on TV, or popping from one cancer event to another, all the while with cancer eroding her memories, dulling her personality, hurting her body, sapping her energy, reducing her functioning day by day in a slow march. Cancer is UGLY.

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I keep going back to old pictures, because I hope to keep a balance in my memories of now-Vanessa and then-Vanessa, so this time and this Vanessa is not the only way I remember her. When I don’t revisit Vanessa 1.0 in my head for a while, I will actually gasp out loud when a memory or picture of how she WAS comes flashing back. People have told me that once there are no more new memories made, no more “now Vanessa” for my brain to reference, then the before/after and the old/new memories will balance back out, with the good times of old AND now Vanessa staying top of mind. I hope so, and I think that seems likely.

But for now, I feel the need to make sure people see not just the now Vanessa, but the “real” one too, from pre-cancer, pre-mets, even just pre-brain-involvement. My heart breaks to look at this Vanessa 1.0 collage, but I hang on to these smiles and goofy faces and many memories SO tightly to make sure they don’t leave:

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The last thing I want is for anyone to think that I only mourn the loss of Vanessa’s “looks” or her changing body type. I mourn every single one of the losses, and would take Vanessa looking any way at all, but with her clear mind, any day of the week. Pictures, though, still tend to be the easiest and quickest way for me to portray a visual of the deeper, more fundamental change/loss I’m trying to convey.

It’s also a fact that Vanessa has always been beautiful, and very much cared about presenting herself flatteringly, so I find myself sometimes absorbed with concern in this area now. I think about how Vanessa 1.0 would have never, ever been caught dead in some specific clothes, or with this hair styling, or with quite that much sparkle going on all at once. And I wonder, would she want me to stop her now self from leaving the house in certain outfits, or posting certain pics on facebook?! I can almost hear the old Vanessa saying “Oh my gosh! Do NOT let me wear that! That is way too much pink!” But Vanessa is currently trying to find her way in the mental space that cancer has left her with, and the elements of this “glamour” still speak to her, so that seems to be the current V reality I want to honor, too. I finally have accepted that it seems right to help Now Vanessa feel beautiful and treasured in this time, while telling the story of Past Vanessa, too, and hope it all balances out. I hope she would agree if she could comprehend this dilemma. I’m so glad she looks in the mirror and just sees beauty still, even as I am cognizant of so much more whenever I see her.

[This seems a good time to take a quick minute to express our sincere gratitude for all the folks who make very kind comments on V’s outfit pictures on facebook, in person, etc. I sometimes have to take a deep breath when I see a new batch of pics go up, and take a step back to compose myself again – and in those moments it never ceases to make me tear up when I see the comments come pouring in. “You look like a princess!” “What a great belt to show off your small waist.” “That purple scarf is just gorgeous, Vanessa!” You have no idea how meaningful it is to have people understand her motivations and meet her where she is, even in those brief moments when I am too in pain or shock to do so myself. Thank you from the bottom of our hearts.]

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Beauty is truly a squishy, elastic thing. Some days I just find it missing. I miss the beauty of Vanessa’s words, thoughts, intelligence. The world is missing out on the beauty of her graphic design talents, and Blustery Day Design is missing 1/3 of our talent and passion and enthusiasm. Vanessa’s friends are missing her beautifully sincere concern for them, the authenticity and care she brought to their friendships. Her family, immediate and extended, misses her compassion for each one of them, her honest desire to help in any way she can. Billy is missing his wife as a peer on his journey, the beautiful family they won’t have together. I miss every single day the beauty of Vanessa’s easy laugh, quick sarcasm, wit and determination. CANCER IS UGLY.

Other days, I do see beauty all around. It’s there when Billy puts on his model face to help Vanessa feel goofy and normal. It’s there when Vanessa spends 4 hours getting ready and then descends down her steps in a perfumed haze, with 8 pieces of jewelry and a satisfied smile on her face. It’s when Dad hugs Vanessa and V tells him he is the best hugger ever and he just grins. It’s there when Mom takes V’s hand and they move together through a crowd in perfect harmony. It’s beautiful when Christina pets her head (trust me, V loves it!) and sings her songs, and Vanessa tells everyone that Christina‘s band is the best in the entire world, and really means it. It’s there when friends and family visit and write and send pictures and love. LIFE IS BEAUTIFUL.

It’s not the whole beauty I wish for Vanessa, nor the expanded, full, rich kind she deserves, but it’s real and true just the same. I am glad when I can see it, and when I believe Vanessa feels it.

In the end, the ugly and the beautiful, for each of us, sit side-by-side. Neither is lost in, or removed by, the other. The ugly sharpens our edges to a stark contrast, while the beauty adds a hazy glow of light that diffuses and softens. Together they are a truthful portrait of the duality that is life.