for those who cheer on marathon day                   5.6.13

Thank you to Boston Magazine for posting this as part of the series, The Shoes We Wore.

I had not expected so many people to cheer for us. Erin and I were not the kind of runners who normally inspire wonder. We ran the Boston Marathon in 2001 with a goal of finishing in 4 hours, 30 minutes. If anything, people might look at us and think, what determined women. We trained on deserted streets in the early mornings, but on Marathon Monday, the streets were packed with people cheering for us. I hope to never forget what that felt like. Long after the elite runners zipped past, thousands of people stuck around and kept cheering. In 2013, people like this were hit by the bombs.

Erin had a race number but I did not, so we lined up with the bandits, unofficial participants at least one-quarter mile from the starting line: behind the sleek runners in tiny shorts, behind runners fast enough to qualify, behind people like Erin who had raised money for charity. As a group, the bandits looked like they’d just rolled out of a bar. Most were in old T-shirts and shorts, some were in costume, two wore Blues Brothers suits. While we waited to start, a dozen or so men peed into bushes around the edge of some family’s yard.

In a photo of me and Erin that day, I have the same look of amazement that Bill Clinton used to get when he walked into a ballroom jammed with supporters, a look that said he couldn’t believe so many people liked him. On that day I couldn’t either. For 26 miles, people cheered. We passed a band playing 70s rock in a suburban driveway. Children held their hands out for high fives. Adults raised signs or beers or just their clapping hands. As we approached Wellesley College, we could hear the famous swell of female voices. I had heard that the student body lined the course each year but nothing prepared me for the way my chest expanded, my skin tingled, my arms raised over my head of their own accord as we ran through the tunnel of cheering students.

With 10 miles to go, we found my mom and sister. Neither of them likes crowds, but there they were at the base of Heartbreak Hill, mainly because I told them it would mean a lot to me. They called our names, we called back, and then we jogged on. My mother and sister were supposed to go home after that, that was our plan, but something moved them to take the T to Copley Square.

With three miles to go, my boyfriend joined us. His role was to talk Erin and me through the final stretch, but he kept surging ahead. For more than a mile, he’d sprint, realize he’d dropped us, run in place while we caught up, then sprint ahead again. I had barely enough energy to move, but I knew how he felt. By then, the cheering was almost deafening. When the three of us crossed the finish line, I saw my mother and sister packed in among the crowd. I was delighted and nervous and asked if they were OK as soon as we reunited. My mom described seeing a group of runners help their friend across the finish line. My sister said she was ready to start training.

I imagine many of the people killed or wounded on Boylston Street this year were like my family: at the marathon out of love or duty or because they knew their presence mattered to someone at the end of a long run. They were people who stood at the finish line long after the frontrunners sprinted across, who cheered for people like Erin and me as if we were rock stars. I remember feeling on top of the world that day, like I could do anything, all because of the people who stuck around and cheered.

pink intentions       6.29.12

I recently had the uncomfortable experience of going to the movie, Pink Ribbons, Inc. with a friend who has been through two bouts of breast cancer in less than six years.

The movie looks at “pink washing” and how the phenomenon has effectively glossed over questions such as why breast cancer continues to flourish despite all the walks and fundraisers. In the course of many of our lifetimes, a woman’s risk of breast cancer went from 1 in 20 in the 1960s to 1 in 8 today.  Add to that the fact that only about 50% of women with breast cancer have a known risk factor for the disease and the waves of pink seem, at best, misguided. Why aren’t more campaigns aimed at reducing environmental hazards so fewer women get breast cancer in the first place? Why is early detection promoted as our saving grace?

As I sat and watched shot upon shot of women decked out in pink, I remembered how  helpless I felt when I learned that my friend would have to undergo another round of cancer treatment. I wanted to help but there was so little substantive help I could actually provide. Never mind the fact of this particular friend’s fierce independence and almost knee-jerk refusal to accept help. Even if she had let me hold her hand, drive her to chemo treatments, or clean her toilet, none of it would have changed the fact that she had cancer. Again. And that it sucked. So I empathize with the sentiment behind the pink pom poms, head bands, and cowgirl hats. After a while, you need some way to channel a mountain of good intentions.

I also remembered an essay, written by another friend, about why she’s had enough of pink ribbons. I’m grateful she has allowed me post her story on my blog.

pink ribbon overload        6.29.12

by Beverly Biehl, guest blogger

On Mother’s Day, my family knows to avoid the color pink in any gifts for me. I’m 5½ years out from my own brush with breast cancer, and have had my fill of that color.

I lost it in front of a Girl Scout wearing a Pink-beribboned bucket hat

When National Breast Cancer Awareness Month rolls around in October with its ocean of Pink, I put up my mental barriers and try to enjoy a fuchsia-free fall. It was when I got blindsided by a Girl Scout wearing a Pink-beribboned bucket hat talking about the importance of a mammogram that I lost it.

Breast cancer ribbons have become the latest in tacky fashion accessories. Women are being lauded as “heroic” for simply following a prescribed course of treatment for a disease that kills only 40,000 a year. By comparison, heart disease kills 350,000 women and strokes kill another 96,000. Yet the American Heart Association’s Red Dress campaign hasn’t achieved the cachet of that ubiquitous pink ribbon. I keep asking myself why: What is it that makes one particular disease more visible than the other?

Breast cancer has a better marketing department. So many products are available to “support the cause” that it’s become easy to indulge your altruistic urges with the swipe of a credit card. Buy a Pink mixer. Eat some decorated yogurt. Go for a jog in your new Pink Ribbon warm-up suit. Pay your bills using your special Pink pen and mail it with your Breast Cancer stamps. Hey, we’re making progress toward getting rid of this scourge, aren’t we? Aren’t we?

Another sign of the constant pink bombardment

Quite frankly, the massive marketing effort has cheapened the show of support. What many well-meaning consumers don’t get is how looking at all of these Pink-logo’d items actually take many survivors straight back into the chaos of the initial diagnosis and all of the life-altering changes that ensued.

The constant Pink bombardment makes it much more difficult to move on to the next phase of our lives. And there I am at a Girl Scout meeting, being asked by a sweet 10-year-old if I had had my mammogram this year. She was trying to earn a special Breast Cancer Awareness badge. One of the troop member’s mothers had been recently diagnosed, so this was thought to be a good way for them to show their support. If it had ended there, maybe it would have been, but when they started handing out bookmarks, pencils, key chains and other cheaply made, destined-for-the-dumpster pieces of Pink, I got irritated.

When I expressed my uneasiness that young girls were pawns in a major marketing campaign, I was surprised at the reaction: “If we don’t keep up the marketing, then people will forget all about this disease!”

Fat chance. As long as there are mammogram machines and breasts, this disease will continue to be found and treated successfully the majority of the time. I’m just tired of the in-your-face ubiquity that keeps us in a constant state of trepidation as to if/when our mammaries will become memories.

we are all genetically programmed to die       6.2.12

Less than two years after Anne got married, her husband’s parents called with the news that his sister had a rare brain disorder and he might too. At first, the news changed everything. And then, in a lot of ways, it changed very little.

Severe migraines were the first sign of the reduced blood supply to Bonnie's brain.

Pete’s sister, Bonnie (not her real name) had been diagnosed with Cadasil, an inherited condition in which blood vessels to the brain become thick and congested. Usually migraines are the first sign that the brain is trying to make do with a reduced blood supply, typically around the age of 30 or 40. Anne’s sister-in-law was 48. Her diagnosis came after a period of train-stopping migraines and an MRI that revealed early brain damage.

One of the hallmarks of Cadasil is a series of mini-strokes that kill tiny portions of the brain. Bonnie’s damage is clustered around the lobe that Cadasil targets first. Over time, this damage will accumulate and cause progressive dementia. By the time Bonnie is 60 or 65, she will likely depend on her family to manage her every need. By that time, she might not even know who they are. “Cadasil takes away every aspect of a person’s life and personality,” says Anne. “You can’t remember. You can’t talk. You can barely walk.”

Now Pete and Anne face the question — should Pete get tested?

Here are the facts:

Cadasil is exceptionally rare. So rare that when Anne called her physician friends for advice, they had to look the condition up.

There is no cure. People like Anne’s sister-in-law can manage symptoms but can’t do anything to subvert their own downward slide.

Neither of Pete’s parents have Cadasil. This too is incredibly rare. Most often, Cadasil passes down through families. Bonnie got very, very unlucky. The only way to know if Pete is equally unlucky is to submit to a test that will show whether he has the same unlikely mutation as his sister.

If You Knew You Would Die
Like many people, Anne used to think that if she could look into her future, she would. If you listen to the adage, knowledge equals power, knowing when and how you will die gives you time to prepare. You can do all the things you’ve been putting off: tell people you love them, take a trip around the world, learn to meditate.

But life is more complicated than that.

Fountain of Eternal Life, Cleveland, OH

As one of Anne’s friends told her, “we are all genetically programmed to die.” Most of us just don’t know when or how. Maybe it’s a state of denial, but life in the modern world has a hint of eternal life. Death is inevitable yet also somehow avoidable, at least in our imaginations. Pete and Anne have an option most of us never have, to remove the mystery of if and how Pete might die and they’ve decided not to.

‘We’ve revisited our decision many times,” says Anne. Knowledge does not necessarily equal power if you can’t do anything about it. If Pete’s brain is programmed to follow the same slow death as his sister’s, he and Anne could only sit and wait for it to happen. Nothing — no pills, no surgery — can prevent Cadasil or even slow its progress.

Life in the Present
Pete is younger than his sister by eight years. He does have occasional migraines, mild ones. If he knew he had Cadasil, every migraine would come with its own shadow of doom. He and Anne would ask themselves, “Is this it?” They don’t want to live like that, though in many ways now they can’t help it.

Diapers on the line

There’s also the fact that Anne and Pete wouldn’t change anything if they found out Pete has Cadasil. They’ve both travelled extensively. They live in a city they love. They have good friends, and had their first child this past year. If Pete has the mutation, his daughter has a 50% chance of having it too. Like many prospective parents, they talked over the possibility that Anne could get pregnant and they could find out the baby had some sort of disorder. At the time, they were thinking about Down’s syndrome. When they found out about the specter of Cadasil, their agreement held — they would move ahead with their plans to start a family.

For now, Anne and Pete are living their lives, enjoying their marriage, taking turns changing diapers. In many ways, the uncertainty in their lives is no greater than anyone else’s. They’re just more aware of it.

Resources
Jeffery P. Bishop (Anne’s friend who told her we are all genetically programmed to die.) The Anticipatory Corpse, Notre Dame Press, 2011 

Cadasil Information Page, National Institute of Nerological Disorders and Stroke

Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukencephalopathy (also known as Cadasil), Genetics Home Reference, U.S. National Library of Medicine

Cadasil Together We Have Hope, Cadasil Foundation

in autism’s shadow      5.12.12

My last blog told the story of how my friend came to grips with her son’s autism. This entry looks at the situation from her younger son’s perspective.

For several years after the diagnosis, Peter watched his parents’ world revolve around his brother. Plenty of second-born kids grow up in their older sibling’s shadow, but try having an older brother with autism. Peter had just turned 1 when his parents got word of TJ’s diagnosis. And, as Peter is quick to point out when things don’t go his way, “It’s not fair.”

An early photo of Peter.

Looking back, his mom, Lauren, agrees. It wasn’t fair that Peter had to sit on the sidelines for several key years so his parents could focus on TJ. As Peter formed his first words, his parents lived in fear that TJ would never do the same. When other kids played at the Gymboree, Peter stayed home so a legion of specialists could play games with TJ.

Taking one for the team
It was not fair, and there was no choice. For kids with autism, the early years are critical. Autism has a way of locking a kid’s skills behind a thick wall. Who that child might become is buried deeper, bundled tighter, and takes more effort to tease out than with typical kids. The fact that Peter’s parents got right on the ball with TJ worked out for the whole family. TJ is fully verbal. He goes to public school. Friends seek him out. He will have more opportunities and greater independence than if he’d been treated like just another toddler. And none of this came without sacrifice.

Peter at a recent soccer game. Off camera, TJ cheers him on

Lauren and Sean have done their best to make those first years up to Peter. They make dates for one-on-one time with him. They bring him to a therapist where he can talk about things without guilt or apology. And now that Peter plays basketball and soccer, they bring TJ to his games. Sometimes TJ’s brotherly support consists of a brief, “Go Peter,” before he returns to the book or drawing pad he always brings along. But he is there and Peter knows it.

Autism through the eyes of others
Peter sees the way people look at his brother. In the summer, Lauren takes the boys to a local pool where Peter plays with the other kids while TJ invents his own games. He can spend a full afternoon dancing with his own shadow. One day Peter saw another kid staring while TJ did his unusual dance. Some kids might have pretended not to notice. Some might have said that wasn’t their brother. Peter went up to the kid and introduced himself.

“That’s my brother, TJ,” he said. “He has autism. If you want to know anything about it, you can ask me.”

This was a good day for Lauren, and she believes it was good for Peter too. He got to be an expert, and he got to help another kid understand something about autism and his brother.

Other days don’t go as well. Some days he comes home upset, like when a kid with autism in his class gets picked on and he can’t make it stop. One day a girl in his class told him TJ is a loser.

“He came home really upset,” says Lauren. When she asked if he thought his brother was a loser, he said, “No, he’s my best friend.” When she asked if what the girl said mattered, he said, “Well, it hurts.” Lauren told Peter it hurt her too. Then the two of them talked about things he could say if it happens again.

The brothers in a recent picture. Peter is now 10 and TJ is 12.

I don’t know if I could be so diplomatic. And Lauren has fantasies that aren’t as  socially acceptable, if only vengeance would make matters better instead of worse. “So I tell him it hurts my feelings too,” she says. “So he knows we’re in this together and maybe he won’t feel so alone.”

Hero one day, frustrated brother the next
Compromise doesn’t come easy to most kids but autism makes it even harder.

TJ likes to play the same game over and over again, Peter likes variety. They make a deal: If Peter plays TJ’s game, then TJ will play Peter’s game. The only problem is that  TJ often doesn’t want to play anymore when it’s Peter’s turn to choose the game. Part of this is kids being kids. Another part of it, and Lauren treats it this way, is a chance to hold TJ’s feet to the fire.

“Some days he gets it and plays Peter’s game, and some days he can’t do it,” Lauren says. Which means that sometimes Peter compromises and TJ refuses. On some remarkable occasions, when TJ feels bad about a fight they’ve had, he hugs Peter really hard and says he’s sorry. Sometimes Peter hugs him back but if he’s still mad, he pushes TJ away, and reminds anyone who will listen, “It’s not fair.”

Read Lauren’s blog about her boys, life, and really awful sushi.

a family faces autism         3.11.12

TJ and Peter a few months after the diagnosis. TJ's holding cards that helped him communicate because he couldn’t talk yet.

Lauren started to notice things when her son was about 2 years old. She and TJ were regulars at a playgroup of kids born around the same time. This allowed the moms to compare notes as the kids started to sit up, crawl, and walk. “It was so interesting, just to see all the different kinds of development taking place,” says Lauren. “And TJ was right along with them.”

And then his path started to diverge. He would start crying in the middle of playgroup for no reason. Sometimes the cries escalated into screams and Lauren had to scoop him up and get them both home. Then the other kids started forming words, but no words came for TJ “And that’s how I first noticed that he was different and how something might be wrong. That’s how it started for us.”

Period of adjustment
TJ was 2 years, 3 months old when he was diagnosed with autism. He’s now 11 and Lauren speaks with full candor about her family’s experience. When I ask if it’s okay to use her and TJ’s real names, she answers yes immediately. “I’ve always felt if you’re shy about it, there’s something to be ashamed about, and we have nothing to be ashamed about,” she says. Even so, talking about the early days still brings her to tears. She says she can talk about it, believes that it’s good for her to talk about the period she describes as the hardest time of her whole life, but the old pain comes up every time.

Among many other things, autism forced Lauren to take stock of her expectations as a mother. She learned to resist the urge to envision her children’s futures. (TJ has a younger brother, Peter.) Autism put a question mark next to nearly everything. She didn’t know if TJ would ever talk, never mind if he would go to college or what he would major in. As she describes it, “The biggest and most immediate lesson was, how dare I envision any sort of future at all for my kids? It’s up to them to tell me what they want their futures to be.”

Open to almost anything
From very early on, Lauren and her husband approached TJ’s autism with an attitude of, ‘let’s try it.’ They exposed TJ to as many types of therapy as possible to see what worked, and as many situations as possible to see what made him uncomfortable. Each time they learned something about their son, they could make their next move.

Like a lot of kids with autism, TJ had trouble with social situations so Lauren brought him back to playgroup not long after his diagnosis. At first he kept to himself, and Lauren was fine with that. “I kept saying, as long as he’s in the room, and not in a different room in a corner, that’s okay.” When the other kids got too loud, Lauren and TJ would go into another room for a break, and then return to the group.

Playgroup slowed down as TJ got more services. At one point, he got 20 hours a week of services at the house. Early on, the teachers would have him do things like identify colors on a set of cards. Over time the drills got more challenging. The drills would last for 20 minutes and then he got a chance to play and unwind for a couple of minutes, then on to the next drill.

The hours of early intervention seem to have paid off: TJ is in sixth grade now, fully verbal, and contrary to Lauren’s fears, has been able to connect with other kids. Still, it’s work for him to be there. “He works really hard, he holds it together at school, and then when he comes home, he lets it all hang out,” says Lauren.

An expert in TJ
I can’t help but tell Lauren she’s an expert in autism, and it turns out I’m not the first person to say so. She quickly corrects me: She’s an expert in TJ. Autism plays out differently for every kid. For her part, Lauren knows what TJ struggles with, and what he’s good at. Every kid is good at something, but kids with autism tend to be really good at the things they’re good at. For TJ, one of these things is art—he can look at a picture once and draw it. Or he’ll picture his dream house and start to draw that. Other kids ask him how he learned to draw so well and he’ll say, “I don’t know. I guess I’m just a really good artist.”

As the expert in TJ’s autism, Lauren has also learned when to let him zone out, and when to draw him back. After watching a show once, he can replay the show in his head. If he’s had a hard day at school, Lauren lets him watch a show in his head for a while, but pretty soon she’ll say, “Okay TJ, out of your head. Come talk to us,” and draw him back into the room. This is her role. Lauren provides comfort and safety, while also tugging at him, always pushing him just a little further than he wants to go, teaching him coping mechanisms along the way.

More than just autism
Besides autism, TJ also has anxiety, which is the case for a lot of high-functioning children with autism. Researchers think that knowing they’re on the outside of social circles and feeling helpless to do anything about it gives rise to anxiety. And in one those grim jokes of nature, anxiety can turn around and make a child even more socially awkward. More about anxiety in children with autism.

That said, Lauren and Sean have become masters of planning ahead to mitigate both the autism and the anxiety. Before any outing they try to anticipate what might go wrong and come up with a game plan. For instance, the sound of the buzzer at Peter’s basketball games used to startle and upset TJ so they taught him to watch the clock and predict when the timer was about to go off so he knew when to cover his ears.

Autism is not who you are, but part of who you are
Lauren and I are Facebook friends and her posts are often funny, touching, and/or heartbreaking. In one she quotes Peter, her youngest asking, “Mom, can I have extra Wii time? It’s really hard having a brother with autism.” In another on the last day of winter break, TJ tells her that having autism makes it hard for him to go back to school, which prompts this post, “It’s official – BOTH my boys have played the autism card.” Then the following evening, after his first day back, TJ declares, “I have autism,” and starts bawling.

TJ and Peter head back to school this past fall.

I revisit these posts after speaking with Lauren because our conversation leaves me feeling elated and optimistic. I need to remind myself that no matter how well she and Sean work to give their sons the best lives possible, and I think they are remarkable in this regard, the day-to-day experience of having autism in the family can be a long, hard slog. The autism doesn’t go away, no matter how well they manage it, and some days are inevitably better, or worse, than others.

When TJ tells her he wishes he didn’t have autism, Lauren tells him he might as well wish he didn’t have green eyes. “It’s not 100% who you are but it’s part of who you are” she tells him, “So let’s learn how to make that work for us.” When I ask her how she got to the point of being able to say that, she responds, “It’s slow. It’s being able to look backwards and see how far he’s come.“

Looking back
When TJ was first diagnosed, a teacher told Lauren to videotape him, because she would want to look back. “And I thought, I can’t even look forward. I’m terrified to think what is going to happen. I didn’t know if he was going to talk. I didn’t know if he’d be in a regular classroom. I didn’t know if I was going to have to get five jobs to support his therapies. I didn’t know. And that prospect of looking ahead was terrifying to me.”

But she listened and she did videotape TJ and now Lauren and Sean can look back at where they started, and realize how far all of them have come. Towards the end of our conversation, Lauren says of TJ, “I think he can do anything he wants to do. I think the world is his oyster. I don’t think he’s limited, I think he’s limitless. And he can have the most wonderful life he can have. But I couldn’t have said that 8 years ago.” I believe her on all counts.

why so many new year’s resolutions fail     12.8.11

So many apples, so little time. Photo by Chris Stepanian

Late December is a popular time to picture your ideal self: The you who consistently eats right, reads more books, and never procrastinates. I know, I fantasize my ideal self around this time every year. And then the inevitable happens–life. Typically, by February I’ve given into the fact that cauliflower takes more work than cupcakes and am back to spending guilty evenings with Glee instead of Gertrude Stein.

The annual rise and fall of my good intentions made me a good person to write a guest blog about failed New Year’s Resolutions for PATH. The name stands for Planned Action Toward Health and the organization has a great track record providing worksite wellness programs. You can read the blog here.

My blog explores the connection between health and identity so I was thrilled when I read my friend’s essay about how allergies forced her to give up an identity she had come to love. She is kind enough to let me post it here.

new image courtesy of contact dermatitis 11.14.11

by Maria M., guest blogger

I'd been some shade on the blonde spectrum for more than a dozen years

When my allergy doc asked, “do you color your hair?” I initially felt flattered. The artistry of Scott, my beloved hairstylist of the past 15 years, often solicited such accolades. Instead, the question was one of many that she asked on the penultimate day of my patch test, a four-day diagnostic that aimed to uncover the reason my eyelids had begun swelling, deflating, cracking, and bleeding. The test involved having potentially allergenic substances dotted onto my back, from shoulders to waist, and waiting to see which provoked a reaction similar to that on my eyelids. Once we identified — and I avoided — these substances, said the doc, my eyelids would return to normal.

Certainly, I thought, the chemicals that elicited the shine and sparkle of the many blonde shades woven into my hair couldn’t possibly be the culprit. I’d been some shade on the blonde spectrum for more than a dozen years, and my eyelid problem was only a recent concern. Plus, I wore my hair away from my face and definitely away from my eyes. But the doc told me otherwise. Skin is capable of tolerating the thousands of substances it comes across, but sometimes it decides it’s had enough of one or more of them. She also told me that the thin, delicate skin on my eyelids is vulnerable to the residue of any substance transferred whenever I rubbed my eyes.

I remained steadfastly optimistic about the unfathomable concept of being allergic to my blonde until, as the doc requested, I tracked down the ingredients of the products Scott used on my hair. On the phone from the salon, Scott patiently spelled lists of multisyllabic chemicals as I transcribed each word with hopeful surgical precision. The next day, I gave the list to the doc during the final day of the testing. My spirit sunk when she circled the three chemicals ending with “persulfate” on the list of ingredients. Though I silently hoped for an alternate source of lightening, the doc informed me that any product with bleaching capabilities was verboten.

Blonde impossible

Once I had gorgeous, glossy golden highlights, it seemed like anything in life could be possible.

When I received the final results of the patch test, I discovered that I was allergic to almost all of my cosmetics, as well as most of my other beauty and personal-care products. I was okay with ceasing their use in the name of good health. Yet, I couldn’t imagine returning to my natural hair color, whatever that was. The doc told me that one special kind of hair color existed that I was permitted to use. Her nurse gave me an information sheet about the color, readily available at beauty supply stores in many shades. Many shades of brown, that is.

Thinking about my trip to Miami the following week and my vision of my hair glimmering in the Florida sunshine, I asked the doc if it would be OK for one last hurrah with retouched roots. She declined my request, underscoring the dangers of continued exposure. An allergen weakens the skin, which allows the allergen to be absorbed by deeper layers of skin tissue and, potentially, the bloodstream. And when I researched pursulfates at home, I learned that the FDA issued a warning about the pursulfates in denture tablets causing allergic reactions as severe as anaphylaxis.

Death by blonde, of course, was out of the question. And so I tolerated my increasingly dark roots in Miami and for an additional month, well aware that I was prolonging the mourning process for my blonde, and that I had to let it go. Intellectually, I knew that blonde was merely a hair color, but it also represented something else: it was something I never knew I could be. I’d ruled out blonde half a lifetime ago after a college experiment with the fabled Clairol Hairpainting kit. But Scott had affirmed that anyone could become a beautiful blonde, even a brown-eyed brunette like me. And once I had gorgeous, glossy golden highlights that really seemed to be growing directly from my scalp, it seemed like anything else in life could be possible too. And that outlook gave me confidence.

Luckily, Scott squelched my worrisome thoughts about no longer being blonde. Over the years, we had become good friends and supported each other through life events more dire than having to return to a shade of darker hair. I had always been game for his artistic vision. He, too, would miss having creative control over my tones and highlights, but he cared more about my health beyond my split ends.

On the day I said bye to blonde, Scott applied the brownie-colored gel to my hair and gave me encouragingly positive reviews about the medically approved coloring while I averted my nearsighted eyes from the ongoing transformation. Guiding me back to his styling station after shampooing my freshly colored hair, Scott presented me with an interesting offer: for years, he had always wanted to cut my hair into a certain style – a much shorter style, in fact. He had never mentioned it, since he knew that I wanted to keep my blonde hair well past my shoulders. Without wanting any other details, I knew my answer.

“It’s all yours.”

New hair, new attitude

Taking away the blonde revealed other possibilities.

I watched darkly-lacquered locks, large and little, flutter onto the nylon hairdressing cape I wore before they slid gently onto the white ceramic floor. Seeing these excised the sacrificial feeling I had when I first sat in the chair, and replaced that feeling with optimism and excitement. I hadn’t had this much hair clipped from my head in longer than I could remember. As a blonde, I never wanted any of my hair’s length, always (and unnecessarily) cautioning Scott to simply trim the ends. But taking away the blonde, as well as a lot of my hair, now revealed other possibilities. As Scott combed, snipped, and chopped, he raved about the color’s finish. He blew it dry, piece by piece, some pushed back, others pushed forward. And then he handed me my glasses.

My momentary anxiety over losing more than half a foot of my formerly blonde hair morphed into delight over my shiny, bouncy ‘do. It smoothed out my cold-weather skin tone. It highlighted the gold and grey flecks in my irises the way that (I thought) only the eyeshadow I used to be able to wear could do. It also drew a few other hairstylists to Scott’s station to admire his work and my rich, radiant color. I soaked in all of the compliments and continued to unabashedly enjoy my reflection in the mirror because, for maybe the first time, all of my vanity was perfectly healthy.

40 years of our bodies ourselves      11.2.11

In 1940, Paul Popenoe, a eugenicist and marriage counselor wrote,  “…feminists may be described as women who have inferiority complexes based on the fact of their sex.” (Modern Marriage: A Handbook for Men, The Macmillan Company)

Thirty-one years later, a group of feminists managed to overcome their inferiority complexes and penned the first issue of Our Bodies, Ourselves. The booklet provided information about women’s health and sexuality and challenged the medical establishment to improve healthcare for women. Forty years and nine editions later, Our Bodies Ourselves (the organization) continues to promote women’s health and rights in the U.S. and beyond. The book has been adapted and translated in more than 25 languages by women around the globe and thousands people read Our Bodies Our Blog.

Women’s health has enjoyed plenty of medical and political breakthroughs, but the path has been far from straightforward. Read on for some of the key milestones in women’s health of the past 40 years.

The Seventies

1971
The FDA issues a warning against DES, a synthetic form of estrogen widely prescribed to pregnant women to prevent miscarriage.

1972
Title IX requires schools and colleges that receive federal assistance to provide the same athletic opportunities to girls as they do to boys.

1973
In Roe v. Wade, the U.S. Supreme Court determines a woman’s access to legal abortion is a basic privacy right and not to be determined by state law.

1976
The Hyde Amendment passes, barring the use of federal Medicaid funds to pay for abortion. This legislation continues to restrict poor women’s access to abortions to this day.

The Nurses Health Study begins. With 238,000 nurse subjects, it is the largest and longest running study of women’s health.

The FDA approves e.p.t., the first over-the-counter pregnancy test kit.

1978
Six years after the passage of Title IX, the percent of girls participating in sports increases from 4% to 25%.

1979
National Cancer Institute declares that Halsted radical mastectomy is no longer the preferred treatment for most cases of breast cancer.

The Eighties

1980
FDA requires all tampon packages to include inserts explaining the risk of toxic shock syndrome and how to prevent it. 

Calvin Klein publishes ad featuring 15-year-old Brooke Shields, “You wanna know comes between me and my Calvins? Nothing.”

1981
Congress funds “chastity education programs” through the passage of the Adolescent Family Life Act.

The National Coalition Against Domestic Violence establishes day of unity in October to mourn battered women who have died, celebrate survivors, and honor all who are working to defeat domestic violence.

1983
The CDC reports that women who use the Dalkon Sheild have a 5-fold increased risk of pelvic inflammatory disease compared to women who use other IUDs.

1984
The Reagan administration introduces the Global Gag Rule, disqualifying any overseas organizations from receiving U.S. Family Planning Funds if they provide legal abortion services.

1985
Surgeon General, C. Everett Koop, convenes a “Surgeon General’s Workshop on Violence and Public Health” to examine the epidemic of violence against women, children, and the elderly.

Photo by Tristan Savatier

1987
More than 200,000 gay men and lesbians march in Washington DC to demand equality.

The Nineties

1990
The NIH establishes the Office of Research on Women’s Health to address the inequities in women’s health.

Teen pregnancy in the U.S. peaks at 117 per 1,000 teens.

1991
Anita Hill testifies at Clarence Thomas’ Supreme Court confirmation hearings, and brings the problem of sexual harassment out into the open.

The NIH establishes the Women’s Health Study to examine the most common causes of death, illness, and quality of life after menopause.

1993
Congress passes “Don’t Ask, Don’t Tell,” banning openly gay men and women from serving in the U.S. military.

1993
President Bill Clinton repeals the Global Gag Rule.

Marital rape becomes a crime in all 50 states.

1993 – 1998
Wave of violence targets abortion providers:

• Dr. David Gunn fatally shot in Pensacola, Florida, 1993.
• Dr. John Britton and James Barrett shot to death in Pensacola, Florida, 1994.
• Sharon Lowney and Lee Ann Nichols shot and killed in Brookline, Massachusetts, 1994.
• Dr. Barnett Slepian fatally shot in Amherst, New York, 1998.

1994
Violence Against Women Act establishes federal penalties for spouse abusers and provides federal money for rape crisis centers and women’s shelters.

1998
FDA approves “the morning-after pill”. It can be taken up to 72 hours after unprotected sex.

Women’s Health and Cancer Rights Act requires group health plans that cover mastectomies to also cover certain reconstructive surgery.

A New Millenium

2000
The World Health Organization estimates that worldwide, 68,000 women die from unsafe abortions each year.

Photo by NARAL Pro-Choice America

2001
President George W. Bush reinstates the Global Gag Rule.

The U.S. Institute of Medicine determines that gender should be an important consideration in medical research.

2002
Women’s Health Initiative clinical trial of estrogen-progestin hormone treatment ends early because the risks outweigh the benefits.

2003
Teen girls spend over $8 billion a year on beauty products alone.

2004
Teen pregnancy rates hit historic low, due in part to more teens using birth control effectively.

2006
FDA approves HPV vaccine for girls and women to prevent cervical cancer. It later extends approval of the vaccine to prevent some vulvar and vaginal cancers.

2007
Federal funding for abstinence-only and abstinence-only-until marriage sex education reaches $176 million per year.

Photo by Julie Kertesz

1970-2007
Life expectancy increases for white women from 75.6 to 80.8 years.
Black women’s life expectancy goes from 68.3 to 76.8 years during the same period.

2007
The American Psychological Association links sexualization of girls in the media to eating disorders, low self-esteem, and depression.

2000-2008
Abortion rates in the U.S. decline — except among poor women, for whom the rate increases 18%.

2009
President Barak Obama reverses the Global Gag Rule

Anti-abortion extremist murders Dr. George Tiller in the foyer of his church in Wichita, Kansas.

2010
Congress passes the Affordable Care Act.

The American Society of Plastic Surgeons reports nearly 219,000 cosmetic surgeries on people between the ages of 13 and 19. Common procedures include nose reshaping, breast reduction, and acne and acne scar treatment.

Photo by James Davison

Title IX linked to a 40% rise in employment for women between the ages 25 and 34. About 50% of high school girls participate in sports, however, daughters of poor or uneducated parents are less likely to play sports and reap the benefits of Title IX.

2011
Major strides in gay and lesbian rights:

• President Obama directs the U.S. Justice Department to curtail its support of the Defense of Marriage Act.
• New York joins 6 other states that allow and recognize gay marriage.
• Don’t Ask, Don’t Tell repealed after 18 years, allowing gay men and lesbian to serve openly in the military.

Time Magazine names Our Bodies Ourselves one of the most influential non-fiction books published since 1923.

40 years after the first edition, the ninth edition of Our Bodies Ourselves is published.

***

Deepest gratitude to the board and staff or Our Bodies Ourselves, as well as to Betsy Friauf, whose post on Women’s Health Milestones provided endless inspiration and insight.

my mother, my nurse, part 2      10.31.11

It only made sense that Donna would be the one to stay in Cleveland after Laurie’s back surgery. She had the clinical skills, could speak “Hospital,” and keep a watchful eye on her daughter’s recovery. But when her husband went home, Donna was alone. I ask her if being a nurse made the time in the hospital easier or more difficult, and she says both. Easier, because she knew the course of treatment and what to expect. Difficult, because she didn’t get along with all of Laurie’s clinicians.

The next hurdle after surgery: dealing with all the tubes.

In total, Donna and Laurie spent three weeks at the Cleveland Clinic. Both describe the first few days as agony. The surgery left Laurie in pain and hooked up to a superhighway of tubes. Donna ticks them off like a grocery list: a chest tube, a catheter, an NG tube up her nose, and an IV tube in her jugular vein. Every time she saw Donna, Laurie would tell her, “I want this stuff off.”

Donna did not hit it off with the clinician in charge of Laurie’s overnight care, especially after Laurie called Donna crying at 6:45 one morning. When Laurie had asked for the phone at 5am, she was scolded with, “You know your mother needs sleep.” Donna, who would sleep on the floor next to Laurie’s bed when they got home, talked to a few people and someone new was assigned.

That same morning, the clinical team took Laurie’s catheter out and made her walk. Donna could see that it was excruciating. But beyond the pain on Laurie’s face, Donna could see something else: Laurie was standing up straight.

You’re not the boss of me

When the tubes were out and Laurie was strong enough, she and her mom moved to an apartment across the street from the hospital. Here, Donna was just a mother again. Any authority she’d had while Laurie was in surgery, recovery, or the ICU did not make it in the move. This became especially clear when Laurie refused to use the breathing machine that was supposed to help restore her lung function. Donna could explain why she needed it but Laurie didn’t have to listen. She was 19, had a spine full of hardware and up until recently, tubes in her nose, neck, chest, and bladder. Enough was enough.

On the third morning, Laurie woke up at 3am, unable to breathe. Donna listened to her chest and couldn’t hear any sound on one side of her chest. Back at the hospital, a CT scan showed that one of Laurie’s lungs had filled up with fluid. The overnight team in radiology drained 1500 ccs (about a liter and a half) from Laurie’s lung through a needle. “It hurt her like hell and she had a huge bruise, but after that she could breathe again.” I’m pretty sure I hear a hint of satisfaction in Donna’s voice when she adds, “She used the breathing machine after that.”

When they finally got back home after three weeks in Cleveland, Donna slept on the floor next to Laurie’s bed, watched over the mild withdrawal Laurie went through when she came off the pain meds, and took the sutures out of her back when they were ready. Then she went back to school.

From spine nurse to pain nurse

Originally I thought seeing Laurie in pain made Donna go into pain management but I was wrong. Pain was on her mind well before Laurie’s surgery. It wasn’t necessarily luck, but it was one of those things that the spine clinic where Donna worked closed not long after Laurie’s surgery. Donna went back to school.

These days, Donna says that she gravitates to the most difficult patients. Pain management is anything but straightforward. People react differently to the medications. Some people’s bodies break them down quickly, others don’t. Some people get relief right away while others continue feeling awful. She can account for weight, she can account for the patient’s reported level of pain, but there’s no way to know for sure how a patient will react until the drug is in his system.

The constant uncertainty plus the memory of seeing her daughter in pain keeps Donna on her toes. “Laurie is always on my mind every time I treat a patient,” she says. So she takes time to get it right. For her, a patient who doesn’t respond the way she expects is a chance for her to learn.

“Making someone comfortable, it floats my boat. To me there’s nothing better than to work with someone who’s in pain, figure out a way to make them feel better and have them say, ‘I don’t know what you did, but I’m glad you’re here.’”