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:

Monday, May 1, 2017

All About Awareness

It’s Arthritis Awareness Month!  This is a big month for me – not only does this month focus on multiple conditions that I have, but it does so with the support of multiple organizations that I volunteer with.  So without further ado, let’s talk about arthritis!
For starters, the most important thing to be aware of is that arthritis is an umbrella term that covers over 100 different conditions.  Yes, that includes your grandmother’s bad hip – that’s osteoarthritis (OA), a degenerative joint disease caused by wear-and-tear.  But it also includes things like carpal tunnel syndrome, gout, and rheumatoid arthritis (RA).  And then there are my issues

Back in 2007, I started feeling like something was wrong, but I couldn’t quite pinpoint what it was.  My body ached everywhere – a deep, immobilizing pain as if I’d just done an intense workout.  I felt an indescribable fatigue that no amount of sleep (or coffee) could defeat.  I had headaches and stomach aches daily, and often felt dizzy, nauseous, and weak.  In 2008 I was sent to countless specialists for countless tests, but the doctors had no answers for me.  They suggested I was “just depressed” or worse yet, making it up.  After two separate nurses (parents of clients, not actually treating me) suggested that it sounded like fibromyalgia, I began to do my own research.  The more I learned, the more I knew that those two nurses were right.  Still, the doctors continued to dismiss me, to disregard my suffering and deny my pleas for help.  It took another four years before I was officially diagnosed with fibromyalgia.  Treatment does reduce the symptoms a bit, but what meant more than anything was the validation that what I was feeling was real.  That’s why Fibromyalgia Awareness Day (May 12) is so important – it lets other people suffering with this condition know that they are not alone.

As bad as it is, I wish I could say that fibromyalgia was my only ailment.  Sadly, it rarely acts alone; fibromyalgia patients often have a number of overlapping conditions. In 2011 I developed new symptoms: unbearable pain and swelling in my feet and ankles, and rashes on my legs.  Though these didn’t fit with what I was sure was (still undiagnosed) fibromyalgia, they were visible, which meant the doctors could no longer say it was all in my head.  I was told it was “some kind of arthritis,” that it was autoimmune/inflammatory, but the doctor didn’t know exactly what type.  Over time, it progressed, so that my hands often swelled and nearly all joints became painful.  It took another four years of rotating misdiagnoses and failed treatments before we finally figured out that the inflammatory arthritis and other symptoms were part of a rare disease called sarcoidosis.  Like with fibromyalgia, the confirmation of a definitive answer after years of only questions was a huge relief.  Also like with fibromyalgia, the treatment helps to alleviate the symptoms somewhat, but I still have pain and fatigue every day, and a bad flare can knock me out of commission for days or weeks at a time.

Saturday, April 29, 2017


I have always been a positive person.  I’m an eternal optimist, always holding on to hope, always looking to focus on the silver lining no matter how cloudy life gets.  Sometimes I put pressure on myself to keep that up – partly because I just prefer it to being sad, partly because I feel like a hypocrite when I don’t, and partly as a matter of self-preservation.  Even (or especially) since illness has become such a big part of my life, I find reasons to keep my smile, things to be grateful for daily.  I feel like I'm supposed to say I’m lucky, it’s not that bad for me … not compared to the others.

When I was finally diagnosed (after 8 years of trying to figure out what was wrong), I googled Sarcoidosis and the first thing that came up was the Bernie Mac Foundation: started by his wife after he DIED from this disease.  I haven’t died, so I’m lucky, - it’s not that bad.

In the online groups I frequent, I see post after post about people hospitalized due to their illness.  I haven’t been hospitalized, so I’m lucky – it’s not that bad.

At events I’ve attended, I’ve met people who must travel with portable oxygen tanks.  I haven’t required oxygen, so I’m lucky – it’s not that bad.

A friend of mine was misdiagnosed with lung cancer and treated with toxic chemotherapy for years before being correctly diagnosed with sarcoidosis.  I haven’t been misd- … well, I haven’t been misdiagnosed with cancer (RA, Lupus, Psoriatic Arthritis, Still’s Disease, and Undifferentiated Connective Tissue Disease, but not cancer), and I’ve only had low-dose chemotherapy treatment, so I’m lucky – it’s not that bad.

I feel like I’m expected to say that I’m lucky because it’s not as bad as it could be, or as bad as it is for some others: I haven’t died or come close to dying from my illnesses.  But is that really the standard we should use for “luck”?  Yes, I’m grateful to be alive … but lucky?  

Sunday, April 16, 2017


When my mother was diagnosed with thyroid cancer over 20 years ago, she never really talked about it.  She didn’t want to make a big deal of it, didn’t want to worry my grandmother or anyone else.  She never even really said the C word until years later.  She just had “a thing taken care of,” and that was the end of it.  Even when we started doing events with the American Cancer Society, she was hesitant to own it for herself, to join with others in the Survivor Lap.

Anyone who knows me (or follows this blog) knows that I am not shy when it comes to talking (or writing) about my illnesses.  You’ve seen my posts about Sarcoidosis Awareness Month, Arthritis Walks and advocacy activities, and my involvement with World Autoimmune/Autoinflammatory Arthritis Day.  It took a little while to get comfortable with that, to get over the embarrassment and the fear of what other people would think of me.  Ultimately, I had to just get over it.  These illnesses aren’t my fault – I didn’t do anything to bring them on myself – and if writing about them can help anyone else, then that’s more important anyway.

That said, I’ve still been mostly quiet about one illness/area.  Physically, the details are not what anyone wants to think about, so I don’t write about them.  Psychologically, I was scarred by my third grade teacher: if any student had to go to the bathroom during the school day, she said we had 3 minutes; any longer and we would be in trouble (she assumed we must’ve been playing, not actually using the facilities).  I was conditioned to have this negative association with an entire system; a natural biological process became synonymous with being bad.  Even though I now know how wrong she was, it’s been so deeply ingrained that nearly 35 years later I’m still not comfortable discussing it.
International Foundation for
Functional Gastrointestinal Disorders
I recently discovered that in addition to Sarcoidosis Awareness Month, April is also IBS Awareness Month.  My initial instinct was to just let that pass without a word … but then I thought about why I write about the rest. 

The shame and secrecy make it so much worse.  Maybe if I’d heard people talk openly about this type of thing when I was younger, it wouldn’t have been as bad for me.  Maybe I could have spoken up when I was having problems, rather than waiting until I had to be brought to the emergency room at 8 years old.  Maybe I wouldn’t have developed such unhealthy habits that only make a “bad” situation worse.  Maybe I wouldn’t have felt so isolated, living with a problem that I couldn’t talk about, and even doctors couldn’t easily explain or resolve.

Saturday, April 1, 2017

April is SAM!

Living with a chronic illness is never easy – it can rob you of your abilities, your independence, your sense of self … not to mention the pain and other physical symptoms.  When your illness is cancer, MS, or another well-known condition, it usually brings with it sympathy and support from those around you:  most people have heard of these diseases, and have at least a basic understanding – they know these are serious, and want to be there for you.  When it’s sarcoidosis, however, that last part is often lacking.

With sarcoidosis (and many other rare/less well-known diseases), there’s not a fast and direct line from symptom to diagnosis.  It can take years of doctors, tests, and misdiagnoses before the right one is discovered, and even longer before a helpful treatment plan is worked out.  During that time, the symptoms get worse, but the understanding and sympathy from those around us often fades.

To an extent, some of that is almost understandable.  We seem to drag on, often looking well though we say we feel awful, unable to answer the most basic questions, like “what’s wrong with you?”  Our symptoms change from day to day, and often mimic or overlap with other conditions.  We call out sick from work, cancel social plans, avoid chores … and no one really knows why.

That’s why Sarcoidosis Awareness Month (SAM) is so important.  It gives us the opportunity to answer some of those questions, to help those around us to understand what we’re going through, and to help others living with sarcoidosis to know that they’re not alone.  It gives us a chance to say the word, put a face to it, and to build a community of patients and supporters who are in this together.

The first question to answer, of course, is What is sarcoidosis?  I’ll let the Foundation for Sarcoidosis Research answer that: