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You Need This... I Promise

Perspective

 

five long-haired girls in bikinis standing together smiling on a beach
warmer times in 2009 - Louisa and Harriet in the center

 

I usually send this post out on Tuesdays. We have had a lot going on here. Like many others, our business is upside-down, and – conscious of the illness sweeping through the country, knowing how much worse I could have it – I have not felt it appropriate to be SELLING in quite the same way. The tone of my usual "You Need This" posts feels misplaced because no one really NEEDS anything right now… except N95 face masks. I had another post teed up, but it just feels a little light for today. I'll save it for next week – I have been wanting to write about this for awhile. I feel a bit nervous about it, but there has been a lot more vulnerability out there in the social media water lately, so maybe now is the time. What I need now more than ever (I promise,) and maybe you do as well, is perspective.

It isn't just this pandemic that is making me feel that way. I have been working on my perspective and acclimating to a "new normal" for almost three years now. In June of 2017, two of my five daughters, Louisa and Harriet, were diagnosed with an extraordinarily rare degenerative neurological disease. Hereditary spastic paraplegia (theirs is actually an even rarer form, SPG15). Although they both had minor learning differences when they were young, they were sporty and lively and 'normal,' and in the jumble of their other sisters, there was no real clue as to what was going on inside their DNA. The pieces started to come together in their early twenties, which is when diseases like this generally start to progress, and our very brilliant neurologist Dr. Juncos put it all together, ordered some full-scale DNA testing to confirm his hunch, and months later, the diagnosis was a fact. It felt a bit like the Diagnosis column in the New York Times magazine, where no one can figure out what's going on until a doctor half-remembers some rare condition he read about once in medical school, and voila… the mystery is solved. It turns out that the romantic story we had always told the girls of how Sid and I just happened to cross paths that day on the beach wasn't just romantic… it was one in hundreds of millions. How did we find each other? An odd random gene from me plus an odd random gene from Sid gave us a 1-in-4 chance of having a child with this condition. 2/5 would have been a good bet.

The outlook is not great. Both of them have diminished mobility - crazy for girls who played soccer until high school - and cognitive decline. They use quad canes to walk (another sister painted chic initials on Harriet's) and will almost certainly land in wheelchairs someday. They stick to practical, nonslip footwear - Stan Smiths for Harriet, lug-sole Gucci loafers for Louisa - because they trip so often. It is a progressive disease, and they can no longer drive or live alone. Their futures changed that day in the doctor's office, and we have been sorting it out ever since, one day at a time.

My career in fashion has always revolved around taking pictures of beautiful things – now I make those things AND take pictures of them. And beauty makes ALL of us happy. It's why we spend so much time on Instagram! But if you get too hung up on the beauty of it, on everyone's beautiful vacation photos and decorated homes, and think that tells the whole story, it can actually make you pretty UNhappy. Or at least it does for me. A great friend of ours, Tom Oates, has a line he likes to repeat: "a picture tells a thousand lies." It's a joke, but I have latched onto that phrase and repeat it over and over and over again. Because to me, THAT is perspective. There is always more to the story – and what is behind the picture is always more nuanced.

For years we used one of my daughters (Harriet, the one with the monogrammed cane) in many of our ad photos. She works in our office as a design assistant, and is so photogenic that we started coaxing her in the studio as a model. The pictures usually turned out beautifully (although I know am biased) but what they don't show is the struggle to get in the clothing. Her dystonia looks similar to cerebral palsy, if you're familiar with that kind of movement, and it is often a huge effort for her to move in a way that looks natural in real life. She tires easily, and has a hard time when people speak too quickly… but she happens to have a great profile. A photo is a blip – a fraction of a second – and so it cannot capture the tremor in her hand, or her slowness to get on set. And thus, the most literal application yet of "a picture tells a thousand lies." What you see is a beautiful girl in a chic striped shirt; what you don't see is her weakened legs crossed awkwardly out of frame. Perspective.

 

long-haired brunette girl sitting wearing a blue and white striped collared shirt
Harriet in our striped Boyfriend Shirt

 

We naturally shy away from what is not so pretty, or different, or awkward-looking. We crop it out or choose not to look. The ONLY time I can ever remember my father being disappointed in me was when I was in seventh grade, when I refused to acknowledge my mother in the hallway of Northview Jr. High when she was leading her special education students to a class. As a 13-year-old, I was mortified to have my mom at my school in the first place, but if I was honest with myself, her students scared me a little. She loved her job as an aide, and she had a particular fondness for their differences. My father was furious and ashamed of me – rightfully. I still have a hard time thinking about this. When Harriet in particular had her more obvious learning issues as a child (she spoke late, and then in a halting stutter,) I thanked God every night for her beauty, knowing that it would make things just a little easier for her, even if everything else had to be hard. I am a little ashamed of that too.

I need to keep reminding myself of perspective as I get older, particularly about beauty – I hate that it has become so important to me. Is that another shame? I used to look at the older women I worked with at Vogue, and promise myself that I would never fear aging. They were just SO COOL. If I am checking my own perspective on physical beauty at this point in my life, though, I am even more aware of how I have misjudged intellect – another trait just as random as beauty. My patience level for the cognitively disabled has skyrocketed (my mother would finally be proud) and I no longer get so impatient when the person ahead of me in the grocery checkout line is moving too slowly, or the car in front of me doesn't start moving immediately when the light turns green. The beautiful photo of someone's vacation on Instagram, or the limited view I have of the person driving the car at the stoplight… those are only blips. I don't know what's going on. None of us do.

So perspective has been forced on me, and I have finally gotten to a point where I am grateful for it. If you need some yourself, when this virus passes, go have a sit in the waiting room at the Emory Brain Health Center. (We spend a lot of time there.) The people who work there are so kind I could cry. There are all sorts of abilities and differences in that room, and my girls often leave feeling so capable in comparison. They don't get that so often. In this case, comparison is NOT "the thief of joy". It is a jerk into gratefulness.

I have written a lot – and maybe it has been too personal. I should have led with a disclaimer, or maybe a Mature Audiences rating? You Need This I Promise won't turn into my diary… I promise. But one last story. Years ago I read a review by David Brooks that mentioned an anecdote from Calvin Trillin's description of his late wife Alice. It struck me so much that I still have the yellowed piece of newsprint torn out of the New York Times:

 

yellowed and dog-eared New York Times newspaper clipping
from David Brooks' NYT column on December 14 2006

 

In 2006, this took my breath away. Who could have known that perhaps this was a bit of foreshadowing? That I would become the woman who looks at her daughters that way, thanking God that they were born and that they were born to me. Thanks for reading. This felt great to write.

From Ann

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