Living With Chronic Illness: What It's Helpful Not To Say

I live with chronic illness. It's depressing and hard to talk about.  It's everything going wrong and at the same time nothing actually being wrong. It's spinning in a circle and then tumbling off balance. It's fighting a war inside of your head with no battle wounds to show for it.

A quick disclaimer before I actually start talking about this: I know that anyone who has said these things to me or anyone else in the past has meant well and that you say these things because you care. And I don't blame you at all. We aren't handed a toolbox that tells us how to deal with chronic illness (although that would be helpful), so I'm trying my best here to let you know, at least from my perspective, what it's helpful not to say and what you should maybe say instead. These are not hard, fast lines. I don't have all the answers. I wish I did.  I also recognize that I am not unique in struggling with this. This stuff is difficult to talk about, but it needs to be addressed.

Don't say:
"I'm sorry that you had a bad day/month/year."
This is what it makes sense to say. Yes, it was a bad day. But I don't know when things will be good, and at the same time, things could be good tomorrow and then bad the next day, or in a week. Unfortunately, this can make someone with chronic illness feel pressure to "get better" for other people. If I could choose to stop dealing with this and wake up tomorrow completely healthy, believe me, I would. But chronic illness isn't fixed by the passing of 12 hours or however many more are left in the day.
Say:
"I know that there are bad days and good days and I'll be there for you on all of them."
This is comforting because it allows me to recognize both the fact that you care about me, and also that you, at least on some level, understand that chronic illness--mental or physical--is more or less permanent. The challenge is finding people who will stick with you in both the ups and the downs.

Don't say: "There are so many people who have it worse than you."
Who does this help? Pain-is measuring contests (as my friend called them) are completely useless. And more importantly, if you know me (or your loved one) at all as a person, you know that I already know this. I know that there are many people who have it worse off than me. I know people in my life who struggle more than I do. Additionally, many people with chronic illness, including myself, already feel like their pain is insignificant and that they should just "get over it."
Say: I believe you and recognize that your pain is valid."
In our society, we don't properly acknowledge the value of validation. People with chronic illness, especially chronic illness that is not visible to the naked eye, often feel like they aren't heard because people have to believe their struggle from hearing their words alone.

Don't say:"Oh, have you tried meditation/yoga/exercising more/a gluten free diet (and the list goes on and on)."
I find this one is more prevalent when talking about mental illness. I'm not sure why: maybe it's easier for everyone to pretend to be a therapist than it is for everyone to be a doctor. I am lucky to have wonderful doctors who will tell me if there is anything else I can be doing to make myself better.

We live in a DIY world where there are thousands of articles on the internet about how you can make your life better if you just drink more water or get up earlier. It may surprise you, but I drink five bottles of water a day, exercise at least four times a week, and do my best to get eight hours of sleep every night (except for the fact that I struggle with insomnia). I write in a journal and go to therapy. I am honestly trying my best to take care of myself, and you telling me this tends to make me feel like there's something I could be doing to "help myself," and that it is my fault that I am still sick.

Say: "I know you're doing your best. It's not your fault."
I work hard to hide pain from other people. If I am talking to you about this, I trust you and you are probably pretty important to me. This acknowledges the effort that I and many others put into living our every day lives. The second part of this recognizes that the blame is not on the person who is suffering because nobody chooses to have a chronic illness.

Don't say: "God gives you exactly what you can handle."
I am a fairly religious person, however you want to define that word, and I most certainly believe in God, but if I thought that God could stop illness or other destruction happening in the world, I would not believe in God. And probably, if I am crying or struggling, feeling like I can't handle it, it is unhelpful for you to say that God thinks I can handle it. Also, how the heck do you know what God thinks?
Say: "If you're comfortable with it, I'd like to pray for/with you."
It's hard for me to come up with an alternative for this one because it drastically depends on both the person saying it and the person suffering as to what one should say.

Don't say:"If you need anything, let me know."
At least for me, I can honestly tell you that I won't let you know because I already feel like I'm a burden by talking to you when you have your own life to deal with. I won't reach out until I am sobbing in the fetal position on my floor or screaming at everyone in sight. And I'm trying to get better at this, but it's really hard to have to be the needy friend, especially for someone like me, who would rather be the one being leaned on than the one who is leaning.
Say: "Can I come over?" OR "I'm going to the drugstore/supermarket/out to dinner, can I bring you anything?" OR "I'm always here; I'll check in tomorrow."
Alright. Let's take these in order: First, at least for me, physical presence is very comforting to me, and you just being there, either in silence or talking can be really helpful. Additionally, while I am struggling, I  feel quite alone, so if it's possible for you to be around, that would be helpful. Second, there are days when I don't feel like getting out of bed, and I also often forget to eat, so you bringing me food can be invaluable. Third, this takes the pressure off of me to reach out, and I probably will reach out again at some point, but this releases the feeling like I have to bother you again if I need something. Sending a quick text the next day or in a few days is endlessly helpful.

Thank you for reading to the end of this endlessly long post. I appreciate you trying, and I hope that this helped at least a little bit if you are feeling confused while your friend is struggling. I would love to hear your thoughts on this piece; please feel free to share.

Guest Post: Birkat HaGomel for Survivors of Assault and Abuse

The author of this post prefers to remain anonymous. 

Content Warning: sexual assault, abuse

Birkat HaGomel for Survivors of Assault and Abuse

When I came to university here I started having what the counseling center identified as flashbacks of some kind. I’d come to Shabbat services and would have to step out in a panic. The funny thing was no one knew what I was flashing back to. Over the course of the next two years, I learned that I’d been sexually abused by someone in my childhood synagogue.

I have always grounded my Jewish identity in community. Both of the congregations I’d grown up in were like families to me. When I found out I had been assaulted, I wasn’t sure whether I wanted to be a part of this family anymore. A family that hadn’t protected me or hadn’t been able to protect me. And a family whose member had hurt me so deeply. I wasn’t sure how to feel safe as part of this family again. But I really wanted to.

I knew that I needed a way to reconnect with my Judaism and with my Jewish community. I searched for rituals, but found tradition lacking. While a few new rituals had sprung up in this void, none felt right to me. Many were geared towards situations irrelevant to me, like the menstrual cycle or Shabbat after being assaulted, or facing an abuser in court. And most of these rituals also lacked a halachic grounding. 

I noticed, however, that many of these rituals were grounded in preexisting traditions like Shabbat evening candles, the tallis katan, or mikvahot. So, I began to scour Jewish tradition for rituals that might be relevant to assault. Which is how I came across Birkat HaGomel.

Birkat HaGomel is a blessing expressing gratitude. It's traditionally recited in the presence of a minyan after surviving something dangerous and scary. The blessing can be summed up as saying “I’m back, things are good now, thank you God and please keep it that way.” To which the congregation responds, “yeah, God, let’s keep it that way.”

Birkat HaGomel is much more popular in some communities than others. Although I’d never heard of it, in some communities it’s recited after illnesses, giving birth, journeys, and for many other reasons. 

However, it was important to me to understand whether Birkat HaGomel was halachically relevant to recovery after sexual assault. I scoured the Talmud and its progenitures, looking for the origins of the bracha and its changes in application. While I found no evidence that Birkat HaGomel has been used by survivors of assault or abuse, the more I studied the blessing the more it seemed to apply to survivors.

                  One of the first texts I studied was Berakhot 54b which establishes Birkat HaGomel. In the passage, I found more stories than rules. In fact, the Talmud derives the need for the blessing from a story in Psalm 107. The story follows a group of men who start out as seafarers, then desert-travelers, before recovering from an illness and being released from prison. I think survivors of abuse can relate to each of these four experiences. 

The seafarers are obligated to say Birkat HaGomel because G-d has saved them from storms. The psalm describes G-d calming storms as powerless sailors cry out to G-d for help. 

Survivors who have felt powerless to stop their abuse might relate to these sailors. Survivors of domestic abuse or partner abuse might imagine the sailors frantically adjusting sails in the harsh wind and rain just as they may have tried to keep their family or relationship intact. Other survivors might wish for a life before the public shame rustled up by the strong winds and crashing waves. Still more survivors might compare their own distress to the storm. 

Like the sailors, survivors can feel helpless in the face of abuse and the emotional turmoil that follows. And with Birkat HaGomel, they can thank G-d for comforting them in their time of distress and powerlessness. They can also thank G-d for giving them the strength they needed to survive the abuse or get out of the situation.

But for survivors, like for the sailors, their journey isn’t over. After the abuse, many survivors also have to trek through the desert. Desert travelers recite Birkat HaGomel because G-d helped them find a city when they were lost and dying of hunger and thirst. The travelers in the psalm don’t pray and their spirits have “failed,” but G-d still rescues them and helps them find a city. Similarly, survivors of abuse may struggle to find the support and resources they need. Along the way, they may even give up hope that help exists.  

After enduring the desert, sailors become ill. Many survivors experience mental illness. 30-50% of all rape survivors experience PTSD, and more than 90% experience symptoms of trauma for at least a couple weeks. The sailors’ illness and our current knowledge of post-abuse PTSD teach us that trauma symptoms are part of the experience of surviving abuse or assault. Because Birkat HaGomel is also being recited over healing from the emotional aftermath of abuse or assault, survivors should wait to recite it until they’re experiencing less distress.  

The Talmud section on illness, however, does cite one troubling passage. The psalm describes the sick sailors as “fools who suffered [from sickness] for their sinful ways, and for their iniquities,” (18). Despite this, when they call out to G-d, they are saved from “the gates of death.” Similar language is echoed in the blessing:

הַגּומֵל לְחַיָּבִים טובות. שֶׁגְּמָלַנִי כָּל טוב

ha-gomel t’chayavim tovim she-g’malani kol tuv 

who rewards the undeserving with goodness, and who has rewarded me with goodness. 

While the word “undeserving” is somewhat troubling, other translations actually use the word “culpable” or “guilty.” Unable to find commentary on this word choice, I asked a friend with extensive text study experience – and much better Hebrew than mine. She told me that the language in the Talmud passage of “fools” and “iniquities” is actually really common language around gratitude. And that troubling word in the blessing, “chayavim,” means “debtors.” "Debt" can recall the miraculous healing of the sick, the finding of the city in the desert, and the survival of the storm at sea. This passage reminds anyone who’s survived any kind of danger that they’ve just experienced a miracle and that they should be thankful. 

Next the healed sailors are imprisoned and then freed. This portion of the story brings back up the problem of guilt. It contains similar language to the passage about illness. But unlike disease, isn’t imprisonment actually a result of bad behavior? Not always. I doubt Talmudic times were immune from today’s epidemic of excessive incarceration. It’s also important to remember that even someone innocent released from prison would recite Birkat HaGomel. So maybe a thanksgiving blessing for survival is more closely tied to the dangers of incarceration than a particular ex-prisoner’s actions. 

And abuse has plenty in common with incarceration. For survivors of domestic abuse, imprisonment can be literal. Their abusive partner or relative may have limited their independence and even freedom of movement.  But imprisonment could also be the control that sexual abusers take over their victims’ bodies, and their disregard of their victims’ right to consent.  In the psalm, Sefaria translates the prisoners as sitting “in deepest darkness, bound in affliction.”  The imagery of a G-d that “brought them out of darkness and the shadow of death and broke their shackles” becomes inspirational, if not a bit more abrupt than removing oneself from an abusive situation.

But similarities to these four categories isn’t what extends recitation of Birkat HaGomel to new situations. Through rabbinic debate two requirements for extension developed: dangerousness and distress.

One of the few responsa I found about Birkat HaGomel was by Rivash, Rabbi Isaac Ben Sheshet Perfet, a Talmudic authority in 14^thcentury Spain. In his responsa 337, Rivash argued for an expansion of Birkat HaGomel. His particular expansion concerned the case of someone who survived an attack by a wild animal in the city. Citing the psalm, he argues that desert travelers recite Birkat HaGomel upon return because they survived the potential of being attacked by a lion or other wild beast. Shouldn’t someone who survived an actual attack recite Birkat HaGomel? He goes on to argue that the Germara mentioned the four categories as examples, not limiting factors. When the Talmud was written, those four categories were some of the most common dangers faced. Rivash and other commentators generally expanded the use of the blessing to be for anyone who survived potential mortal danger. 

Those who experience assault or abuse have definitely experienced potential danger – from STDs in cases of sexual assault to the homicide rate among domestic violence victims to the high suicide rates among survivors. But these dangers do go away. With removal from the situation and sometimes psychiatric treatment, many victims return to safety.

What about the second requirement: distress? To recite Birkat HaGomel the person had to know they had a brush with danger and they need to have experienced some kind of distress as a result. I don’t think I need to make any further argument on this one.

                  But what originally drew me to Birkat HaGomel before studying it wasn’t the four original cases. It wasn’t any potential obligation either – I haven’t seen any reference to use by survivors. What stood out to me was Birkat HaGomel’s core concept of return to a community. Part of my recovery and new safety, I hoped, would be a return to my community. And, well, I’m here right now. For me, the presence and response of a minyan is about return to my Jewish family, now a place where I’m safe. 

Even for other Jewish survivors whose abuser wasn’t part of their community, the response of a minyan required for Birkat HaGomel can be significant. Survivors need help to make abuse stop and require both professional and social resources for recovery. They often try to reach out to those closest to them, their community. But too many encounter doubt and blame. In some cases, their accusations fracture their community. Here, Birkat HaGomel doesn’t only represent a change that’s happened for the survivor, but a change that’s happened in the community. The communal response element welcomes the survivor to a now supportive and whole community. It can also serve as an affirmation by the community that they will take steps to prevent other members from being abused. 

But is Birkat HaGomel too public for survivors? Abuse is a deeply personal experience, and no survivor should be pushed to disclose their experience. But there is no public declaration of “why” in Birkat HaGomel. I didn’t have to give this dvar. I could’ve just said the blessing and sat back down. And you might have assumed I recited the blessing after appendicitis or a car crash.

However, Birkat HaGomel doesn’t have to be the end of the conversation. I researched the culture of Birkat HaGomel in synagogues where it’s traditional. In many communities, members will reach out about whether the reciter is okay (a heart attack or bad flu?) or whether something exciting happened (like a faraway trip or a new baby!). Birkat HaGomel gives survivors an opening to discuss their experience while providing some flexibility in what they tell whom. 

                  It’s okay if you’re listening to this dvar and aren’t on board with my idea of extending Birkat HaGomel. If you’re a survivor listening, Judaism has never had a uniform practice. No one’s pressuring you into reciting Birkat HaGomel anytime soon – and I would hope they never do. 

However, I do think that Birkat HaGomel has the potential to be significant for survivors and their communities. It’s accessible – it doesn’t need a mikvah or a tallis katan. It provides communal acknowledgement without a survivor having to spill every detail. It reminds survivors that the abuse is over now, and they are safe. And the ritual’s broad past also allows survivors to step out of shame and into gratitude.

I hope that everyone who feels comfortable will join me as my community as I recite Birkat HaGomel today.

The Sportula and Tzedakah: On Paying it Forward

I spend a lot of time expressing my gratitude to people (even when they refuse to take my thanks), but they often insist that I must "pay it forward." I must take the gifts that they have given to me, and the gifts that have been given to me by the universe or God or whatever you want to call circumstance, and pay them forward to those younger than me and those who are struggling with the things that I have been through in the past (that's sort of why this blog exists in the first place). I had two experiences in the last few days that have sparked this particular post:

First, I had a close friend diagnosed with a chronic illness two days ago. She was confused, upset, and overwhelmed, all justifiable emotions to have on what I call D-Day, diagnosis day (there may be a blogpost coming on the process of diagnosis). And she called me. She called me because she knew that I would sit and listen and empathize. Because I've been where she is, and I was fortunate enough to have people to pull me out of the hole and to say, "I know that this is going to be hard, " but I will be right there beside you. I was able to pay it forward, and in many ways, while I hope I helped her, being able to help (and asked to help) was one of the biggest gifts I could have been given. I suppose I know what my mentor in Israel was talking about when she told me to "pay it forward" every time I tried to thank her.

Second, over the last couple of weeks, there has been a fundraiser going on on Twitter for an organization called the Sportula. The Sportula provides microgrants to students in the Classics and related fields to pay for their books or other supplies for their education. This is an absolutely amazing organization that helps to fight some of the inherent barriers to the field that can come from coming from a lower or middle-class background. I have been lucky enough to have no problem paying for my education or textbooks in the last 16 years of my education, but I am certainly the exception and not the rule. Unfortunately, due to my chronic illness, I am unable to do as much in-person activism or direct service as I would like, but this is something I can do. The Classics field, especially in college, has given me a home, mentors, and friends, and for that I am incredibly grateful. Donating to this fundraiser is a way in which I can pay it forward (if you'd like to check it out too, here's their GoFundMe and their Patreon).

But then I clicked on Sententia Antiquae's post about the fundraiser, and came across this quote:

"Remember to tell the tale of another's kindness many times
But whatever kind deed you do for others, keep quiet." --Dicta Catonis

This immediately reminded me of the levels of Tzedakah (because of course it did): Tzedakah, which can be roughly translated as "giving" is a concept in Judaism. We are instructed to give as much Tzedakah as we can. Maimonides, a prominent Jewish philosopher from the 12th century established the idea of the eight levels of tzedakah. Most relevant to the above Dicta Catonis quote, however, are two of the top levels. The most obvious connection (and how I ended up writing this blog post), is to the third level of tzedakah, where the donor knows to whom they are giving, but the receiver is unaware of who has given the tzedakah. The top level of tzedakah is essentially what we would refer to as "teach a man to fish": give tzedakah to sustain one or help them to establish themselves. It is very important that this is done in a dignified manner. These last two seem quite relevant to the Sportula, and I wish there was someone doing the same thing in the Jewish world. People who are privileged enough to have money to spare give to the Sportula which then dishes the money out in small amounts to those students who ask them for it. Tzedakah (and the Sportula) or not "charity." They are not charity, they are generosity and solidarity, and this is an important thing to remember.

Even if you don't give a damn about Classics, I encourage you to take stock of the gifts that you have been given and look at how you can pay them forward. Stay up a little later with your friend when they need you, donate a couple of dollars to a cause that helped you, give some advice to a younger member of your community. Don't ask for anything in return. Give what you can where you are, and perhaps all of us together can create a better world.

Why I Study Classics (Even Though I'm Going to Rabbinical School)

I want to preface this post by saying thank you to all of the amazing Latin, Greek, and Classical Studies professors and teachers that I have had. They have taught me the nuances of the field and inspired a love for it within me that may not have existed had I had teachers who remained in the "old school" of Classics being only for the elite, white, male, able-bodied members of society. I (obviously) do not fit into that category.

Let's start out with how I got to where I am today: a Hellenist (sort of) writing an interdisciplinary thesis about wisdom literature in the Ancient Near East and Ancient Greece. I fell in love with Greek mythology and with Latin at the same time: 5th grade. I chose to take Latin in an impulse decision. But I found a community there. I found friends who supported me through the ups and downs of middle and high school. These friends supported me through some of the darkest times in my life, and I always knew that the Latin classroom was a safe place for me (I even hid from my bullies there). Fast forward a couple of years, through a battle with Ancient Greek (that I'm still not sure that I've won) and some other hard experiences and I find myself with a wonderful community, both online and off. I have no idea how I ended up a Hellenist, but that's a whole other story. At Brandeis, our Classics Department is small, but mighty. I've been involved in it from pretty much the day I set foot on campus, and my close friends from there are those who I turn too when the politics within the Jewish community gets to me too much or I need to talk about Classics with someone who won't roll their eyes and as about those damn Percy Jackson books.

The Classics community online has also played a large role in the last few months of my life. As you may be able to assume, since I have a chronic illness, I spend a lot of time in doctors' waiting rooms. During a particularly difficult medical experience about two months ago, I started engaging with the Classics community on Twitter. I had been lurking for a little while, but I finally started posting myself. This community, as seemingly odd as it may be to its outsiders is so REAL for us. It allows students to communicate with academics and for in-depth considerations of issues in the field (as well as quite amusing memes). Social media, in this regard, allows us to cross some of the boundaries that have traditionally been put up in academia. It has allowed me an escape into a place where people understand my feelings about Aristotle, and it has provided me with advice and distraction on difficult health days.

People in the Jewish community (and even in the Biblical Studies community), are often confused when they hear how much time and energy I put into my work in Classics, especially if they know that I want to be a rabbi. They often ask what Classics has to to with the modern world and with so-called "real people." This is fine. I don't know very many Jewish Classicists either.  I'm tired of talking about this (and procrastinating studying for a myth final), so here's a blog post.

So, what does Classics have to do with the modern world? As much as we would like to pretend that we have changed a ton over the last 2000 (ish) years, we still think of things much the same way. For example, just as we talked about our political leaders thousands of years ago, we criticize them today. It is interesting to me that people put such value on very old books when they are religious texts (such as the Bible), but discount the other texts from those time periods. The values and ideas that are presented in those texts are still very applicable to humans today.

And that leads me to the second question: what does Classics have to do with real people? It is much easier to look at ourselves and our own structural biases and issues when they are presented as allegory in mythological texts. We can struggle with the idea of death through quotes from ancient historians and authors (see this blog post from my thesis advisor) and with constructions of gender by looking at the myth of Pandora in Hesiod.

Humanities, in theory, is supposed to teach us how to be more human. The only way that we can do that is by reading and working with what other humans thought about and said. Every time we read the Odyssey thoughtfully, we can use it to think about our agency over our lives. And that's just the first example that comes to mind. Classics has taught me how to think about those who are different than me and how to treat those around me.

At the end of the day, what does Classics have to do with Judaism? Classics has taught me that no culture develops in a vacuum and that there are two sides to every story (even when those stories include the destruction of Jewish sacred sites). It has taught me to think critically about the world in which I live by looking at the world through its texts as a lens, just as so many Jewish texts have. It has challenged my theology and philosophy of life, just as Judaism has. And it has given me so many wonderful people, just as my life in the Jewish community continues to do.

Frankly, I'm not so sure how I got to where I am today, but all I can say is that I am profoundly grateful to be here. I may not be going into Classics after college (and that may be disappointing to some of the amazing professors and teachers I've had), but I will forever hold it close to my heart.

The Ruby: The Power of Stories Across Time And Place

This afternoon, a Reconstructionist Rabbi visited my college. he told a story that my camp director told when I was growing up, and I found myself bursting with emotions, so I decided to write about it. The story goes like this:

There once was a king who had all of the possessions that he could want in the world. He had gold, a huge library, and many gardens. But his prized possession was a red ruby that he only looked at on his birthday. Every year, he would sit down at a long table on his birthday, and his servants would bring him the box with the ruby in it. He would open the box and look at the ruby, and his face would light up with the biggest smile. But one year, he opened the box and there was a scratch on the ruby. 

The king was devastated. He recruited all of the best jewelers, magicians, and scientists and his kingdom, and they all tried one by own to repair the damage, but none of them were successful. But then a little girl approached the king. She told him that if he just gave her some food and water and a little bit of space to work, she would try to fix the ruby.

So the king left the little girl alone with the ruby for a few days, and a few days later, she exited the room in which she had been working and presented the box with the ruby in it to the king. The king was holding his breath when he opened the box, but when he saw what was inside, his face lit up. The scratch was still there, but now, etched on the face of the ruby, was a beautiful rose. 

The first time that I heard this story I was nine-years-old. I was squished in a building with all of camp, and I was not so happy. I didn't know the songs very well, and I was quite homesick. But I remember being drawn to that story. Looking back on it, perhaps I felt empowered by that story. The little girl is the one who saves the day. None of the grown-ups were successful, but she was.

This story means something different to me today: this story shows the difference between perfection and meaning. Something can be perfect but completely without meaning. A blank notebook means very little without its pages filled. This is true about humans as well. We can live more meaningful and dare I say, beautiful lives if we accept our broken parts and use them to continue to shape ourselves. And stories help us to do this. This story, apparently, had an impact on my heart. It taught me that having a "scratch" does not make me broken or any less beautiful. Rather, we are an anthology of our stories, our parents' stories, and the stories of our religion and culture. 

Stories have always been important to me. At a young age, I fell in love simultaneously with biblical stories and Greek mythology (post on why I love/study Classics coming next week), which coincidentally are the two things I major in in college. I am a completely different person than I was when I was nine when I heard the Ruby, but throughout my life, it has taught me the beauty within the  (apparent) brokenness and the power of the little voice speaking from the back of the room.