No Words

I have no words. As someone who has built her career on her ability to use words effectively and well, this simple statement is both humbling and terrifying. But those emotions are simply reactions to the other emotions that threaten to engulf me. Today, on this Sunday of what has been an eternally long weekend, I am filled with pain and sadness, helplessness and fear, sympathy and empathy, righteousness and anger, fatalism and passion, loneliness and solidarity.

The sign my daughter made and carried on January 29, 2017 at the Boston protest against the immigration ban

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I have one request. Have compassion.

Advance apologies – I’m going political on you. But long-time readers of this blog know that this topic hits very personally to me. I was listening to NPR the other day, and a story caught my attention. The story was about a just released documentary entitled, “After Tiller.” Created by pro-choice advocates (so I’m sure it has quite a lot of bias), the film attempts to communicate the reasons why doctors and clinics who perform late-term abortions make the decision to continue doing something that is so clearly fraught with danger. From what I understand (and I should note that I have NOT yet seen it), the film also looks at the people who get late-term abortions for both medical and non-medical reasons. The part that struck me was this statistic: Today there are only FOUR doctors in the US who perform late-term abortions. To get to them, it seems you often have to be pretty desperate.

This is the box that Carrie put together for us to memorialize Baby Girl. Filled with pictures, blankets, hats and footprints, it's something we cherish.

This is the box that was put together for us to memorialize the life that wasn’t. Filled with pictures, blankets, hats and footprints, it’s something we cherish.

Six years ago, my then husband and I were presented with an almost unthinkable “choice.” Continue reading

Have Fun Storming the Library!

I read banned books

You can buy these buttons at: http://www.asja.org/about/store/#banned-books

One of the most common tactics non-profits have to draw attention to their cause is to declare a day, a week, a month. For example, October is well known to be Breast Cancer Awareness Month. You may even know that it’s also Anti-Bullying Awareness Month. According to this governmental website, the month represents 11 different causes including SIDS, Eye Injury Prevention, Down’s Syndrome, Physical Therapy, Medical Librarians, and more. And that doesn’t even count the more than a dozen other special weeks and days, such as Drive Safely Work Week, Walk to School Day, Mental Illness Awareness Week, World Food Day, Psoriasis Day and International Stuttering Awareness Day.

And let’s face it, (almost) all of these causes are important. There are any number of reasons why they should be recognized. But at some point, we may have to consider that we’re asking an awful lot of of October, especially considering we haven’t even gotten to Halloween yet.

And October has it easy compared to May, which has no fewer than 17 month descriptions (including National Mediterranean Diet Month, Ultraviolet Awareness Month and my personal favorite, National Toxic Encephalopathy and Chemical Injury Awareness Month), 10 weeks and 10 days devoted to a wide swath of other worthy causes.

But when I learned that this week is “Banned books week,” well, I could hardly wait to sound the bugles. As an avid reader, the prospect of books being actually banned breaks my heart, no matter how inappropriate the subject.

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Where Medical, Political and Educational Worlds Meet

…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.

There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.

Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.

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Polar Opposites

The advent of social media has really done a number on the way we interact, communicate and consume information. This point was brought home to me when I was watching/reading the “Twitter Town Hall” that President Obama held this past week. The Town Hall also hammered home a completely separate point as well – that the current polarization of those who choose to make their voices heard is smothering our country.

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Healthcare today – Quantity over Quality?

Now you may have noticed that despite having threatened to do so when I first started this blog, my forays into the discussion of politics have been fairly minimal. There are a number of reasons for this: 1) I have a number of friends from various stages in my life who *gasp* aren’t liberals. Shocking, I know. And while I may disagree (often strongly, and occasionally vociferously) with their beliefs on any number of topics, I respect that their experiences and priorities/values have led them to different conclusions than mine have led me. Besides to be perfectly honest (because, you know, apparently I wasn’t being honest before), I find as I get older that I’m just not interested in getting into fights – or even loud disagreements – with people anymore. I’m not going to change your mind. You aren’t going to change mine. And frankly, my memory is crap so I usually forget all the great statistics I’ve read that back up my position. So there.

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It’s Okay to Be Takei.

LALALALALALALALALLALALALALALALA!!!!!!!!!!!!

I’m not quite sure why there are still people out there who think that ignoring something will make it go away.

Tennesee legislature, I’m talking to you. The State Senate in Tennessee has passed a a bill being dubbed the “Don’t Say gay law.” If it were to pass the House, the bill would prohibit teachers from discussing homosexuality in the classroom.

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