For my social media marketing class, the penultimate blog requirement asked us to either compare two mainstream movies with a theme of solitude or to take the #solitudechallenge: 30 minutes of reflection with no distractions. This was a pretty difficult choice for me, as neither sounded particularly appealing. I am, gasp, not a movie person, and having two sit through not one, but two, movies about a subject that I have little to no interest in was definitely off the table.
So, I forced myself to sit and reflect for 30 minutes. Normally, this would be a task that I might actually be excited about. About a year ago I started to do yoga and began to enjoy the quiet moments to myself. I was getting better at meditating and actually, really, truly, clearing my mind and finding peace. Three months ago, I was diagnosed with early stage breast cancer. It was a shock given my young age and despite my family history. In quiet moments, my mind goes to unsettled places of uncertain futures. I don’t really like to be alone with my thoughts for this reason, but it was still more appealing than watching movies.
Despite the emotional implications of the #solitudechallenge for me at this moment in my life, it was and is always a good reminder to be present and stay connected with the real world. We hide behind our phone screens and computers, sharing carefully curated content to convey our own personal brands. The #solitudechallenge helped me realize that I want to be present in as many moments of my life as possible. I do not want to have any regrets about the things I should have or could have done. The #solitudechallenge was a real challenge for me, and, honestly, I am glad that it is over!
The BRCA1/BRCA2 test is a genetic mutation marker tests that indicates risk for breast and ovarian cancer. The tests were in the public eye earlier this year, when Angelina Jolie had a double mastectomy after testing positive for the mutations. Someone like Jolie has nearly unlimited financial resources, but this is obviously not the case for the average person.
Cancer.gov’s helpful BRCA1/BRCA2 FAQ clearly indicates that coverage for testing varies by insurance company and can cost as little as hundred and as much as thousands of dollars. The financial challenges the test presents, as overwhelming as they may seem, are just the tip of the iceberg. If you are lucky enough to afford the genetic testing, you also need to go to genetic counseling, which also may or may not be covered by your insurance.
A BRCA1 mutation marker indicates a nearly 65% chance of developing breast cancer and 39% chance of developing ovarian cancer. A BRCA2 mutation indicates a 45% risk of developing breast cancer, and an 11% risk of developing ovarian cancer. With such a high risk, many women opt for prophylactic surgery, which includes a double mastectomy as prevention for breast cancer and the removal of both ovaries and fallopian tubes as prevention for ovarian cancer. The decision to have prophylactic surgery is life-altering.
Women who elect to have one or both surgeries will endure a long recovery period of reconstructive surgery and hormone therapy, which once again, may or may not be covered by insurance. It sickens me that at such a traumatic moment in a woman’s life, she is essentially penalized for being proactive and seeking preventative care with an utter lack of financial support. Depending on her personal situation, she may also not have emotional support, and the cost of more genetic counseling or therapy may also be too costly.
I was one of my mother’s primary caretakers in the last months, weeks, days, and hours of her life. I was the only person who could get her to stop clenching her teeth long enough to give her a drop of morphine after the metastatic brain tumor inhibited her speech. I went to bed every night to the sound of the oxygen machine that helped her breathe despite the two huge metastasized lung tumors, praying so hard to a god that I didn’t believe in that I’d wake up to her smiling face dancing in the living room – completely cured.
Instead, nearly five years ago, I held the death certificate in one hand citing “metastatic breast cancer” as the cause of death while peeling the “do not resuscitate” signs off of the front door and refrigerator.
It’s October, which means that it is breast cancer awareness month. Some of us are all too aware of breast cancer, of cancer in general, and its devastating effects. Instead of wearing a bunch of pink, please get mad for people like me – people who lost someone near and dear to them and who still have a second traumatic experience to look forward to that often includes a hefty financial and emotional toll.
Though I’m not ready quite yet, I will have the BRCA1 and BRCA2 test in my early 30s. What I will do with the results weighs on me heavily. I am quite sure I would elect to have prophylactic surgery so that my family may not have to re-live my experiences. I am waiting because I am not ready to make those decisions. I’m sharing my story because after five years, I am finally ready to do so.
This is the one thing my mother gave me that I do not cherish.
Please give some serious thought to BRCA1/BRCA2 testing if you have a history of breast or ovarian cancer in your family. Research your insurance company, and please send an angry letter if you find that they do not cover testing, counseling, or reconstruction. It will have a much greater impact than wearing pink.
Accessibility is a buzzword in the museum world as of late. Innovative museum leaders are asking themselves if their institution is serving a broad audience ranging in age, race, and socio-economic status. There are physical barriers like old buildings that are not wheel-chair accessible and economic barriers like the high cost of admission for an entire family. These concerns are real, and they must remain at the forefront of the discussion.
Today, I happened upon this article by NPR titled How To Make Museums More Inviting For Kids With Autism. This was a barrier that I had not thought of before. The closest I’d come was when I teared up reading an article about the Red Sox providing peanut-free sections so people with serious peanut allergies could attend.
I did a little digging, and I was really pleased to find that the Boston Children’s Museum offers Morningstar Access hours for children with special needs. The hours are limited and require registration, but I was also pleasantly surprised to discover that the admission cost is half of regular admission. What a wonderful program!
I am curious to do a bit more research to see if any other Boston-area museums participate in this type of program. I could see it being a big draw for donors who are interested in providing access to the community, as there are many people who could be well served by these opportunities.
Have you heard or experienced any similar programs? What do you think about this effort? Leave a comment below.
I am a loyal J. Crew customer. I get super excited when the new catalog comes, flipping through the pages lusting after the fashionable clothes. I found the Spring issue particularly adorable, because of the cute little boy getting his toenails painted by his mom, with pink Essie nail polish – my favorite!
This ad, which I was melting into a puddle of goo over, apparently made many people upset. Upset enough to air ridiculously ignorant stories on major news networks.
John Stewart put together some great clips of ridiculous pink toenail polish news stories, which can be seen in this amazing video: Toemageddon 2011 – This Little Piggy Went to Hell, which I highly suggest watching. You’ll laugh and possibly even cry.
I’m a life planner and I am fascinated with gender studies. Obviously I’ve already decided that I am going to actively try to raise my future children as gender neutral as possible. If my son’s favorite color is pink and he asks for an Easy Bake Oven for Christmas, you better fucking believe I’ll buy it for him. If my daughter wants a bug farm and a Creepy Crawler maker, she’ll get that too. There is an inexplicable and incessant need in U.S. society for clear gender boundaries and gender roles. They are learned behaviors, perpetuated by a patriarchal society that needs to separate out of fear of the possibility of equality.
Now I’ll discuss a couple of the most discouraging comments made about this ad. As reported on CCN, Erin Brown from the Media Research Center called the ad “blatant propaganda celebrating transgendered children.” I see two major problems with this statement. 1) painting a 5-year-old boy’s toenails hot pink does not make him transgendered. 2) why the fuck shouldn’t transgendered children be celebrated?
Another excellent quote comes from Glenn Beck’s sidekick Keith Ablow, who is somehow an M.D. He states, “gender distinctions have a place in society. I think it is a message she meant to send – it’s an attack on masculinity.” Once again, two major issues. 1) gender distinctions in society function only to oppress and alienate. It creates a false binary. Yet Mr. Ablow would like to perpetuate gender stereotypes and roles. 2) This boy is FIVE. He is basically asexual at this point in his life. Yes, he identifies himself as a boy and pees standing up. He does not even understand what this mystique of masculinity that people like Ablow try so desperately to maintain. This myth that men need to be macho and powerful and can’t like the color pink or paint their toenails. I hope for this little boy’s sake that he doesn’t grow up to be one of those types of men. The world doesn’t need any more of those.
The controversy surrounding this ad makes me realize just how difficult it will be to raise children gender neutral. There is constant pressure from everywhere, especially from the media and pop culture, to adopt “gender appropriate” behavior. I am upset about the controversy surrounding this ad, too, but for incredibly different reasons.