Saturday, May 18, 2019

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.
"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.

Wednesday, May 9, 2018

Dear Spent Gladiator: It's OK not to be OK

Dear Spent Gladiator,

You are a fighter.
With the spears of your words and the nets of your wit, I see you fighting.
I see the drive in your eyes
And your desire to wipe off the blood and stitch up your wounds and live to fight another day.
And you will fight another day.
And you will fight another day.
It may not be tomorrow or this week.
It may even take months.
But you'll keep showing up
And playing the game through the pain as best you can.
It's okay to be hurt.
To sit in the tunnels this round.

No matter what they tell you
You are strong.
You are brave.
Your fans, if they really care will stay.
Your loyal comrades who trained with you
will stay with you because they too know what it's like to be knocked down

For now, spent gladiator, your job is just to stay alive.
Keep living.
Be gentle with yourself.
Tend to your broken parts.
Allow yourself to be jealous while you watch your friends fight in the arena
Allow yourself to feel.
My dearest gladiator, it's OK not to talk to people or to parade in your armor.
It's OK not to tell people what happened if they didn't see.
It's OK to take a break.
It's OK not to be OK.

Note: This poem is based on the Mountain Goats' song Spent Gladiator 2.

Wednesday, April 25, 2018

A Doubt With Every Dance: Yom HaZikaron and Yom Haatzmaut in Jerusalem

A note before you yell at me in the comments: I believe in the right of Israel to exist, and it is because I love Israel so much that I criticize it. I love spending time here, but I don't claim to know everything, and I'm happy to have a discussion with anyone who would like to have a civil conversation. Also, I don't support BDS. 

"Am Yisrael Chai, Am Yisrael Chai, Am Yisrael, Am Yisrael, Am Yisrael Chai"
As we walked down Yafo street, one of the main roads in Jerusalem at around 10:30 pm last Wednesday night, dodging crowds of drunk people covered in blue and white face paint, we heard this song, "the people of Israel live." As we stood next to City Hall, listening to live music coming from two different stages, I felt someone grab my hand and pull me into a circle dance to whatever song was playing. We were all strangers to one another, and considering the fact that my Hebrew is not excellent, I don't know if we would have been able to communicate through words, but we were dancing together, all on the same stone in the same city. 

The unity of the Jewish people of Israel during Yom Hazikaron, the Israeli Memorial Day and Yom Haatzmaut, Israeli Independence Day is truly an incredible thing to witness and be a part of. Standing together, frozen in time during the sirens sounded to commemorate the fallen soldiers, singing Hatikvah with thousands of people, watching Jerusalem switch from mourning to celebrating in the span of an hour were all very powerful experiences. Hundreds of people barbecuing on a sunny Independence Day in the park is lovely. I felt proud to be here, proud of Israel's accomplishments and proud to be a Jew who supports Israel. 

When one experiences these days from the perspective of a Jew, it truly feels like the country stands as one people, united. But then, you start to think more deeply about it, or at least I did. Between the Jordan River and the Mediterranean Sea, there are currently about the same number of Jews and Palestinians. Palestinians are not included in the vision of a Jewish homeland, but they are people, living in this land. Last weekend, I spent Shabbat in the West Bank, and on our way home, we stopped at Shorashim, an Israeli-Palestinian dialogue center, where we heard from a Palestinian man about his experience living in the occupied West Bank. This opened my eyes to the fact that there really are two sides to the story of Yom Haatzmaut which Palestinians call the Nakhba, the disaster. Palestinians identify the creation of a Jewish state, partly on land that was formerly Palestinian, as a disaster. This brought up a lot of questions. What price is being paid for a Jewish state? Are our actions consistent with our Jewish values? And what about the refugees that are being deported or about to be deported from Israel? I don't have answers to these questions, but they need to be talked about. I hope that we look at these issues more complexly and question the media we consume. 

Friday, April 20, 2018

Talmudic Heroines: How I Fell in Love with Aggada

Gemara. Shiur. Halakha. Mishmar.

These were not words I understood or even heard before I got to college. I grew up with what I still think was an amazing Jewish education, but this education did not include learning what these words mean (I'm still not entirely clear on what Gemara is so if someone could clear that up for me, that would be great, thanks). Instead we learned about Judaism's relationship with social justice and how to live practically as Jews in the world. We explored big philosophical questions, and I got the best relationship/sex education that I've ever had. But those things didn't help me when I couldn't understand the announcements at Hillel dinner or what my friends were talking about going to on Thursday nights (by the way, that one is Mishmar, a celebration to get ready for shabbat often involving singing and cholent, a sort of stew).

Talmud especially, even though I didn't include it on that list, was a scary entity with too many words in Hebrew or Aramaic on a page for me to even begin to understand. I felt like Talmud was for "real Jewish scholars," and that I was not one of them, despite the fact that I am a Judaic Studies major who wants to be a rabbi. Bible was comfortable. Bible I could read in English and no-one would judge me. Even Mishnah was made accessible by our former Jewish Chaplain through reading of "Strange Stories in the Mishnah." But I never touched Talmud. I didn't dare register for a Talmud class or God-forbid show up to a Talmud shiur (class).

But that all changed when I got to Israel. Through my program, we had to option to choose between four different classes to take on Tuesday afternoons. The options were an advanced Talmud class, a class based on the Tanakh (the Jewish Bible), a class about Jewish philosophical questions, and a class about Talmudic heroines. Each of the teachers stood up for about a minute to talk about their classes so that we could choose, and I listened to each of them, sort of passively, exhausted from the five hours of Hebrew that preceded our trip to our Beit Midrash program. But then Gila Fine, the editor-in-chief of Koren Publishers stood up to introduce her class, Talmudic Heroines. Now at this point, I had decided that I was going to take the Tanakh class. I don't remember what Gila said, but I remember how it made me feel. It made me feel like I was capable of understanding this text that I had put aside for so long. I told myself I would try it for one day, and if I didn't like it, I could switch.

 The Talmud had always been presented to me as one thing, an authoritative text that was filled with laws and rabbis disagreeing with each other. And it is that. But then I learned about Aggada. According to Shmuel Hanagid, "Aggada is every interpretation that appears in the Talmud about any matter that is not a commandment," that is to say, it's all of the stories that come between the pieces of Jewish law. Aggada is substantially more accessible to the inexperienced reader than the maze of halakha, Jewish Law, especially when you get to learn about it through the lens of different female archetypes. I knew I wanted to stay in the class the first time Classical texts (which I am ironically more familiar with) were introduced to learn about the female archetypes: Circe as the femme fatale, Medea as the shrew. We learned about Yalta, who seems to be a shrew when you first look at the story, but when you examine the story more deeply, you can see the complexities of her character and she can be redeemed. I continued to show up to Beit Midrash each Tuesday, enjoying learning about these women and the fact that they were engrossing enough to distract me from my chronic pain, but I didn't think much of it. I did, however, sign up for a Talmud class at Hebrew University.

Fast forward to two weeks ago when we returned to Beit Midrash after Passover break and I still remembered all of the steps that one is supposed to take to successfully look at a piece of aggada: close reading, context, hypotheses (with subcategories under each of those that I'm happy to share if you're interested). During my Talmud class on the same day, I felt like I could actually compare two texts that we had read. And I realized that Aggada, and to some extent Talmud in general were no longer so out of reach. I have a lot more to learn, but the hardest part was taking the first step.

I owe so much to both Gila Fine and Jason Rogoff for putting up with my ridiculous number of questions and for making Talmud accessible and exciting.

Friday, March 30, 2018

21 Things I've Learned in 21 Years (Or the last three months)

In no particular order, categorical or otherwise, here are 21 things I've learned:

1. Sometimes it's okay to say, "I can't be here." People are bound to forgive you, and you're doing a good job taking care of yourself.

2. External phone chargers are the best thing on earth. Why didn't you own one before January?

3. It's okay to not educate some days. It's okay to not talk about things that you usually love talking about.

4. Walking out of a room when you feel broken and overwhelmed is not rude or selfish; it's self care.

5. Trusting people is hard but necessary especially when the people you usually talk to are at least an ocean and a 7 hour time difference away from you.

6. You will learn to cook. Slowly. But somedays you will say, hell, I'm making breakfast and dinner today; I'm going to pay for the darn 22 shekel (about $6.50) salad for lunch.

7. If you attend enough Jewish events, you can get a lot of free meals.

8. Anti-itch cream and lactaid are hard to find in Israel(although there is a lot of great goat and sheep cheese). Bring some with you next time. Also ziplock bags(although, if you're looking for those, you can find them in the shuk, supposedly).

9. Public transportation is not nearly as scary as you think it is. Also, smartphones help.

10. You should have listened many years ago when some of your role models told you that tomorrow is a latter day.

11. You will meet people who make your intellectual heart sing. Musicians, talmud scholars, etc. Listen to them and learn from them.

12. Don't be ashamed of taking medicine. Your body needs it.

13. Sweet potatoes are delicious. Why did you choose to stop eating them so many years ago?

14. Don't try to speak another language while you're exhausted. You will not be successful. Instead, you will be standing in the middle of Super Pharm(the Walgreens/CVS of Israel) crying because you can't remember the word for eyeliner.

15. Wine is a great host/hostess gift. Keep a few decent bottles around for that purpose.

16. Sometimes you will be acutely aware of your gender. Acknowledge that, let yourself feel it and move on.

17. Sharing your food will help you connect to people. Also hungry college students seem to like dried pineapple, so keep some of that in your bag.

18. While food does bring people together, so does dietary restrictions. Go figure.

19. Some people will be assholes to you when you talk about being sick. Well meaning assholes are still assholes. You can walk away from them.

20. Throw away the empty Gatorade bottles on your floor. Otherwise, you will in fact trip over them in the middle of the night and end up with bruises on both knees.

21. You are always learning and growing. It's about the journey, not the destination.

Monday, March 12, 2018

Let Them In, Let It Show: An Open Letter To Those Who Have Helped Me

Dear Kind Teacher/Youth Advisor/Rabbi/Professor/Mentor/Friend/Whatever else I forgot,

Thank you. From the bottom of my heart, thank you.

Whether I had one conversation with you or 200,

Whether I trusted you with my whole self or just let you in a little bit,

Whether you offered advice that I decided to take(or not take) or not,

Whether you comforted me when I was afflicted or afflicted me when I was too comfortable,

Some of you knew me through the worst parts of my life so far, and some of you have only met me since I've started to come out the other side. Although there will still always be things I struggle with.

Some of you have watched me grow over many years, and some of you only interacted with me for a few weeks or days or months.

Some of you know me now that I identify as being sick, and some of you only interacted with me pre-diagnosis.

Some of you know/knew me in a professional capacity, others in a personal capacity, some in both.

Some of you I talked to a few hours ago, and some of you I haven't talked to in a number of years.

We've connected over religion, shared favorite texts, poetry, language, movies, and books.

No matter which of these categories you fall into. You have helped me in some way. Sometimes it was a text or email to check in, sometimes it was a slightly mocking joke.

So thank you again.

But it was hard for me to ask for your help. My heart sped up when I waited for your email or text back when I asked to talk or for an extension or apologized for leaving class. My hands shook as i walked up (or down) the stairs to your office or as I waited for the phone to ring.

And this blog post was hard to write. But it's important for two reasons. The first is that too often people who do so much are recognized so little in a world of text messages and facebook posts, and I think it's important to express my gratitude.

The second reason is that vulnerability is scary. But over my almost 21 years on this earth, I have learned that it is important. Open up the broken parts of yourself and trusting others can do everything from improving a hard day to building a relationship to saving a life in an number of ways. Crying in front of someone is terrifying.

We, including myself, spend so much time tying to appear like we "have it all together " But I am here to tell you that no person that you meet actually "has it all together" whatever that means. We all have parts of ourselves that we don't like to talk about, parts that are hard to trust other people with, parts of ourselves that are scary. We all have that in common, no matter how old we are or what kind of family we come from. And we all need help sometimes, even if we feel like we are all grown up.   We are all human, after all. No-one deserves to walk alone.

Monday, February 19, 2018

Why I'm So Open About Being Sick (And Why It's Important)

At the Debbie Friedman Memorial Concert at Hebrew Union College Jewish Institute of Religion, Cantor Evan Kent introduced the performance of Debbie Friedman's Mi Shebeirach (the prayer for healing) by discussing the fact that for many years before Debbie wrote this melody, the Mi Shebeirach had been absent from Reform liturgy. Today, this version of the prayer is sung at almost every service in almost every reform synagogue in the USA. The reintroduction of this prayer made it okay to talk about the need for healing of not only our bodies, but our minds, spirits, and souls as well.

As the familiar words of the Mi Shebeirach floated through the room, I wondered what Debbie's intention was behind this song--maybe she wanted to normalize talking about illness because she was sick? Maybe she just thought the words were beautiful? Those are questions we will probably never know the answers to. This being said, deliberating on Debbie's intentions, her kavanah, if you will (the Hebrew word for the spirit or intention behind something), got me considering why I choose to talk about having a chronic illness--or more often write about it as you can see if you have read any of my other blog posts. I came up with two reasons why I talk about being sick, and why it's important to do so.

One night, in a room full of friends whom I had been close with and known for years and one person I didn't, I experienced something I hadn't ever experienced before. This woman, whom I had never met, and at that point, I don't think I even knew her name, introduced herself as a "spoonie" (If you don't know what that is, see this wikipedia article). In that moment, I both high-fived her while the rest of the room looked at us with bamboozled looks on their faces, and I no longer felt alone in being sick--even before I actually had a conversation with her. That night, at least to an extent, changed my life because I had met someone who was also open about being sick, and I no longer had to feel alone, a feeling I had been experiencing pretty much 24/7 over the previous two weeks. She inspired me to start talking about being sick even more openly in my everyday life, not only online, and since then, I have had many of those experiences of camaraderie or anti-loneliness often in the other direction as well with people whom I didn't even know were sick coming up to me and telling me that my writing about chronic illness made them feel less alone.

Loneliness is one of the least talked about and yet most significant "symptoms" of having a chronic illness. Pain itself is isolating; Elaine Scarry wrote, in her book, The Body in Pain, that "to have great pain is to have certainty; to hear that another person has pain is to have doubt." In our social media filled world, we don't talk about our personal struggles that much. Chronic nausea or back pain is not something that one would usually post about on Snapchat or Facebook, or something that I would divulge in an interview for a study abroad program (Shout out to the whole staff at the Nachshon Project for being so supportive and helpful when it comes to me being sick). The lack of media about chronic illness and the lack of conversation about it in general circles causes extreme loneliness and often even depression in people who struggle with chronic illness.

Sharing my story may be scary because I can never truly know how people will react (It feels a heck of a lot like "coming out," an experience I wrote about in this blog post), but talking about it lets other people in. One of the things that I regret is not talking about being sick right after my diagnosis because while it would have been the hardest time to talk about it, I was also incredibly lonely during that time. Talking about being sick helps me, or any other person with chronic illness to feel less alone. Since that night this past summer, I have had way more conversations with other chronic illness warriors and joined a lot of facebook groups for people with chronic illnesses, and those experiences have made me feel so much less alone. Being chronically ill, whether you identify with the spoon theory or not, puts you in a sort of club that you don't want to be in, but you can still be grateful for the other people fighting besides you. And my openness has allowed me to provide the experience that the night last summer provided for me: it has allowed me to help people learn how to help me, and it has aided me in making others feel less alone.

The second reason that I talk so openly about being sick is because I hate the way that we talk about illness, and I want to help people get better at talking about illness. There is no Hallmark cards for people who won't be "getting well soon.". There are very few movies or TV shows out there that accurately depict people with chronic illness. And because there's so little information out there (there is quite a bit on The Mighty if you're interested), when my friend hears that I am chronically ill, they don't know what to say. And that's okay. No one taught them how to help people with chronic illness, so I try to. Most people don't even have the vocabulary to talk about chronic illness. Since I wrote my most popular blog post about what not to say to people with chronic illness, I have actually had people correct themselves in front of me based on the suggestions I provided in that blog post, and I have also had people, sometimes people I didn't even know that well who are friends with me on Facebook, come up to me and thank me because my suggestions have helped them or helped them to talk to their friend with chronic illness. Those conversations are what makes talking about being sick worth it. If I can help one person, I have succeeded in my goal.

The bottom line is this: I am open about being sick because it allows me to send the message to people who are struggling that they are not alone, and it allows me to help those who do not struggle with chronic illness learn how to help. Before that Debbie Friedman Memorial Concert, I had never considered the inclusion of the Mi Shebeirach in the service to be much like my first blog posts about being chronically ill, but the two things both have the intention, or perceived intention, of making it okay to talk about being sick and of making us all feel a little less alone in our prayer for healing.