Monday, March 12, 2018

KISS: Kick In to Stop Sarcoidosis

Everyone knows that it’s not easy living with sarcoidosis.  I take that back.  Hardly anyone knows.  In fact, most people have never even heard of it, and don’t understand when we try to explain (“at least it’s not cancer”).  That just makes it even harder for us to get through life with this disease.  It can make us feel so alone.

I know it was like that for me.  After years of bouncing from doctor to doctor, being dismissed and disregarded with no diagnosis (“maybe you’re just depressed”) or just the wrong diagnosis and a series of treatments that didn’t help, I was finally diagnosed with sarcoidosis in late 2015.  I’d looked up everything I could online, and spoken with dozens of doctors, but I never actually met anyone with my disease … until I attended a Sarcoidosis Awareness Walk.  There was an instant connection, an instant bond with the people I met there, and we have stayed in touch since that day … but that walk was 2 hours away from where I live.  There was nothing – and no one that I knew of – closer to me.

That’s why I’ve started the KISS Westchester Sarcoidosis Walk ‘n’ Roll, and I hope you’ll join me.  The event is in Mamaroneck (map/directions), but may draw participants from all over Westchester, NYC, and some areas of Connecticut.  It’s a chance for us to come together as a community to know that we are not alone in this fight, a chance for us to raise awareness about this disease, and a chance to raise funds for research towards better treatments and someday, a cure. There’s no set distance: we’re on a track, so you can walk (or roll) as much or as little as you’re able.  The important thing is to be there.

You can register here, and join us on Facebook for the latest updates.  If you are unable to join us, you can register as a virtual walker or support us with a donation.  All proceeds will be donated to  Foundation for Sarcoidosis Research.
If you have any questions about the disease, the event, or the organization we're supporting, please don’t hesitate to contact me any time at

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Wednesday, November 15, 2017

Liberty Enlightening the World

It’s funny – people around the world dream of coming to New York City someday, and have a list of the major landmarks they want to visit when they get there … but those of us who have grown up in the NYC area tend to take those landmarks for granted. In fact, many of us never even go to those “must see” sites, unless we’re tagging along with friends or family visiting from out of town. 

That’s why I was so glad when I learned that my synagogue was planning a trip to the Statue of Liberty and Ellis Island.  I thought it would be a positive experience, made that much more meaningful by going with this group.  It definitely was, and to a far greater extent than I’d imagined.

When we arrived at Liberty Island, the rabbi gathered us together for a few brief prayers and readings related to immigration, welcoming refugees, our shared history, and hope for a better tomorrow.  I found myself nodding in agreement with the repeated affirmations that we as a people will not repeat the atrocities of the past; that we will “act boldly and with courage to create inclusive communities that honor the dignity of those whose lives are in danger” (adapted from material by HIAS).  It was an empowering reminder that it is up to us to make this country a safe haven to those in need, that we must do so without prejudice or fear.  It was a call to action to pay it forward, as we were all strangers at one time.

Though I’ve seen the Statue of Liberty countless times in movies or from a distance when crossing the Brooklyn Bridge, there’s a different feeling when you’re right there.  Up close, she is majestic.  Looking up from the pedestal level, Liberty Enlightening the World seems to reach up into the heavens, shining her light in every direction.  The museum inside displays the history of the statue, from its origins as a symbol of the friendship between France and the United States to its greater significance as an emblem of hope for the entire world.  Based on the Roman goddess of freedom (Libertas) and known over the years as Mother of Exiles, she represents the best of what this nation stands for.
That’s not to say that this nation has always (or ever) lived up to those ideals, and the displays in both Liberty and Ellis Island do not shy away from that.  Freedom was not for everyone, and people brought against their will did not see a symbol of hope.  But it is only by recognizing, acknowledging, and owning the wrongs of our past that we can ever work towards making them right.

It is that notion that made this trip so impactful for me – because the atrocities of our present are threatening that ideal every day.  People are not treated equally under the law, and we are seeing more hatred and divisiveness than I can remember in my lifetime.  It feels as though we are moving backwards in our beliefs and in our practices, and I have cried, screamed, and marched for marginalized groups being targeted today (including, but not limited to, those groups to which I belong as a disabled Jewish woman).  But in the midst of all the acrimony, discrimination, and intolerance that are so prevalent today, this trip was a beautiful and refreshing reminder of what this country really is - what we were founded on, what we still believe, and what no political administration can destroy.

If we want to continue to move forward, to strive for liberty and justice for all, then we must speak up, stand up, and act up.  And what gives me hope is that people are doing just that – more now than I can remember in my lifetime.  From movements like Black Lives Matter and the Women’s March to groups like ADAPT and the ACLU, people across the country are uniting with the common goal of protecting one another.  I am inspired by the protests, and encouraged by the results we are beginning to see.

With all that in mind, I am reminded of a concept I learned when I first became involved with the synagogue that led this trip.  It’s called Tikkun Olam, simply translated as repairing a broken world.  It is “our Jewish mandate to do what we can to make the world a better place” (SSTTE).  Every generation sees its world broken in some way, and every generation works to repair it.  These are not simply Jewish values; they are not simply American values.  They are human values, and they give me hope that together, we can make the world a better place.

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Tuesday, June 27, 2017

Why I Advocate

Note: This piece comes at the request of the Arthritis Foundation.  I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks.  I am honored to have been asked, and hope the following does the program justice.  For more information, visit

Nearly 10 years ago, I began feeling a variety of symptoms that didn’t seem to make much sense: I was exhausted and sore without doing anything strenuous, frequently weak, dizzy, and nauseous, I couldn’t sleep.  I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before one believed me and diagnosed it.  Over that time, I developed new symptoms, including skin rashes and painful swollen joints.  It took another 4 years of rotating misdiagnoses before my doctors realized that this inflammatory arthritis was part of a disease called Sarcoidosis.  These illnesses have taken so much away from me: I’m no longer able to work, I have to walk with a cane for short distances and use a scooter for longer ones, and I have to cancel more plans than I can keep.  But the Arthritis Foundation has given back so much.
It’s empowering – and invigorating – to see that even when my body won’t work the way I want it to, my mouth (and my typing fingers, when my hands don’t hurt too much to send an email) can still get things done. Not just little things – important things!

Sunday, June 25, 2017

Not a Drag

Note: This piece was originally written in response to the following writing challenge, offered by The Mighty: 

We often read comments in our community about people worrying their condition will prevent them from being in a relationship or finding love, even if that’s not truly the case. What would you say to someone else with your or a loved one’s diagnosis who also feels this way?


Back in college, I dated the wrong boy for far too long.  He seemed to feed off of every insecurity I had, and even gave me some new ones.  While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time.  One thing that has become my greatest fear, my greatest insecurity.

You’re such a drag, always sick all the time.”

As a (then) English major and (later) English teacher, I focused in on that language.  He didn’t say that it’s such a drag that I’m sick all the time.  He specifically put the negative, the blame, the drag on me.  As if I could help it.  I wasn’t deserving of patience or sympathy because I was suffering; I was made to feel worse because it was bringing him down.  I was the problem.  And that was before I’d even developed the chronic illnesses I now have.  Eventually, I realized that he was not good for me (for at least 100 other reasons), and got rid of that boyfriend … but his words remained buried deep within.

Once I’d gotten rid of him, I renewed a friendship with an old boyfriend who would eventually become my husband.  My kind, caring, supportive husband.  He’d been a friend since childhood, and seen me through the highs and lows of all aspects of life … so I always knew I could count on him to be there when I needed.  Still, when I started to get really sick, my ex’s words haunted me again.

Thursday, May 18, 2017

The 5 People

A friend of mine recently posted an interesting quote on Facebook.  Now that’s certainly nothing to write home (or write blog) about – every day we see dozens of quotes meant to make us think introspectively for a second and then keep scrolling.  Usually, we skip the introspection and just scroll on.  Occasionally we comment and move on, but the point is that no matter what we do, we scroll past it and don’t give it a second thought.  I made a comment – half joking/half sarcastic, and scrolled on, as we’re supposed to do.  But this time, it stuck with me.
"You are the average of the five people you spend the most time with."
~Ok, that's my husband, my mom, and probably 3 doctors.

Ha ha ha … it’s funny ‘cause it’s true.
But that’s precisely why it’s not so funny. 

I tried to think about it more, and come up with a real answer.  Surely there are people I spend more time with than my doctors … right?  I mean … I do see a lot of doctors, but there has to be more than that … doesn’t there?

When I couldn't think of anyone else I spend time with, I went to look at my calendar, hoping I'd find that I have a real life, with real friends and real activities.

Eh … not so much.  It’s actually been a busier month than usual, though, so there was more than I expected: