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.

Sunday, May 27, 2018

Something Gold Can Stay: The Power Of Literature

"When I stepped into the bright sunlight from the darkness of the movie house, I only had two things on my mind: Paul Newman and a ride home."

One of my clearest memories of the year I turned 12 was sitting in the corner of my sixth grade classroom on the day that my little sister was having surgery reading the Outsiders by S.E Hinton. I remember clutching that book like it was a safety blanket, a reality that I could get lost in that made me forget about the fear. In the coming weeks, I read the Outsiders over and over, but eventually I put it down.

Fast forward to a day a few weeks ago in 2018, approximately nine years after I first picked up the book, and on an impulse, I bought the audiobook of the Outsiders. Over the last few weeks I have listened to it, and this book has taught me some lessons that I would like to share with you as well as allowed me to travel back in time through my own life.

The Outsiders, published in 1967 by an 18 year old S. E. Hinton, tells the story of two gangs, divided by socioeconomic status, focusing on a member of the Greasers, the lower class gang, Ponyboy Curtis. The story is told in first person from the perspective of Ponyboy. By the way, I will try to keep this blog post spoiler-free, but if you're worried about spoilers, just go read the book. It's worth it. You can also watch the movie, but it's substantially worse than the book.

1. "Things are rough all over."

In the beginning of the book, Ponyboy and his friend Dally go to the movies, and they happen upon two girls from the other gang, the Socs, Cherry and Marcia. During this encounter, Ponyboy and Cherry have a conversation about the problems that they experience on their respective sides of town, and when Ponyboy tries to say that the problems of the Greasers are worse than those of the Socs, she counters with the phrase, "things are rough all over." It takes Ponyboy only a few weeks to learn this lesson, but it's taken me years.

So often, we think of our own problems as the worst things in the world, and we look at someone else's Facebook or Instagram feed and say, "hey, that's not fair. I'm struggling, and they're out there having brunch." Now I don't want to invalidate your pain (or my own pain) because whatever you are feeling is real and valid, but we need, especially in the age of social media, to remind ourselves that what you see on the screen is not the complete picture. Everyone has struggled in some way at some point. Every person, as Walt Whitman says in his poem, Song of Myself, "contains multitudes." Every picture, every post, every interaction is more complex than we usually realize (Come to think of it, this also applies to Talmudic texts, but blog post on that coming later). We need to remember this. The grass may seem to always be greener, but in reality, "things are rough all over."

2. "Nothing gold can stay."

Note: this is not an original quote from the Outsiders. It's from a poem by Robert Frost that you can find here.

This line is quoted a number of times throughout the novel. Ponyboy quotes the whole poem to Johnny at one point. Johnny says to Ponyboy that he thinks the poem is about childhood and the passing of time. Somehow, I both agree and disagree with this line. We can't stay in that golden age of innocence. We can't ignore reality forever. And that's okay. We need to make peace with the fact that everything will change over time, but that doesn't mean it won't stay "gold." There are beautiful things that can be found even in the roughest of times.

When I first opened this book, I was 11 years old, three years younger than Ponyboy. Now I am 21 years old, making me older than almost every character in the novel. My life has changed a lot since I first sat with this book. I went through high school, made it to college, acquired an iPhone, spent a full semester (almost) in Israel. Heck, Claire, my little sister, who was 8 at the time, is now going to be a senior in high school.  So I guess I disagree with the poem, as Johnny interpreted it. Sitting here in my apartment in Jerusalem, overlooking the Old City, my life feels pretty "golden," even though I no longer consider myself a child. The gold has stayed in some ways and hasn't in others.

Before I started listening to the audiobook, I hesitated, wondering what I would do if the book didn't hold up. I had been saying that the Outsiders was one of my favorite books for so many years, but what if I didn't like it anymore? But it held up. As I was listening to the words that I had read so long ago, they evoked exactly the same feelings as I felt back then. I still sobbed at the sad parts (if you have read the book, you should know exactly what I'm talking about), and I still laughed at the jokes. I now noticed more of the themes and subtleties throughout the book, but if anything, it made the reading/listening experience better--and I didn't flinch every time that a character swore. And I guess that's the power of literature. It allows you to travel through time in a way nothing else can. And it stays constant, a friend on your bookshelf, just waiting for you to take it on an adventure again. So maybe, at the end of the day, something gold CAN stay (if you want it to).

Wednesday, May 23, 2018

Everything Is Awful And I Am Not Okay: How to Survive A Flare

A note before I begin:
Thank you so much to every single person who has helped me to work through this flare. You know who you are. Thank you for calling, texting, and having patience with me while I was very, very stubborn about taking your help. It is impossible to create a list of suggestions that will apply to everyone who is struggling with chronic illness. I just hope that my words can be helpful to somebody who is reading them. Also, these are in no particular order, and I didn't come up with most of them myself.

1.  Let yourself wallow (but not forever).
It's important to grieve the temporary (or permanent) loss of your health. Noone ever teaches us that we can grieve for things other than the dead, and the grief that you may be feeling in this case is valid and natural and complicated just like all grief is. It's okay to be sad and eat ice cream (or rugelach in my case) in bed and feel sorry for yourself. Some days are just going to be hard, and at the end of the day, you are going to have to just take the loss and crawl into bed with the dignity and health you've got.

2. Be gentle with yourself. 
This is hard, and I am not good at it. This being said, when the world seems to be against us, it is our time to help ourselves. The more situational factors or outside issues that we are experience, the more physical symptoms that we are dealing with, the more we MUST try to be kind to ourselves. This means not pushing ourselves beyond our limits or doing things that make our lives harder just because we want to be seem in a certain way. Use a mobility aid if it will make your life easier. Don't torture yourself over missing a class because your whole body is hurting. Don't make your life harder than it has to be.

3. Try to be grateful for the people who have stayed in your life through the flare instead of focusing on those who haven't.
Going through a flare or a crisis situation of any kind can show you who your true allies are. Some people will be with you at the beginning (at the acute stage), but a few days or weeks later they are nowhere to be found. Some people will come in and out throughout the flare. Some will drop off the face of the earth the first time you talk about a single symptom. But some will be with you every step of the way (sometimes literally when the elevator breaks and you have to walk up 3.5 flights of stairs). And those are the important ones who we must be grateful for. Those are the people who you'll remember in years when you look back at this difficult times. Even though going through a flare can drive many of the people who were previously close to you away, there is a big difference between having one or two people by your side and being alone. You are never completely alone, no matter how much it feels like you are. Try your hardest (and I know how hard it is) to focus on your gratitude for those who have stayed as opposed to focusing on your disappointment and frustration over those who haven't.

4. Do your best to do one thing that you love every day. 
Justifying doing something that seems "stupid" or "silly" is difficult when you are at the point at which normal life is already incredibly difficult. But when our bodies or minds are not cooperating, we have to also remember to take care of our souls because every part of ourselves is connected. This can be getting your favorite drink at the coffee shop on your way to work or school, listening to a favorite podcast, or coloring in a coloring book. I, myself, have found listening to music from when I was in middle school to be very comforting to get my mind off of how my body is feeling even if I can't get up and dance to it like I used to.

5. Check in with yourself. 
I can be in a ton of pain and not notice. I can be starving and not notice. Because I am used to feeling pain most of the time, I tend to ignore it and just push through the day like everything is normal. This doesn't work during a flare because you end up stuck somewhere because you didn't check in with yourself to determine how much energy you had left before you left. I am told that this is a common experience of others who experience chronic illness and chronic pain as well. Checking in with yourself can just involve taking a deep breath and doing a quick body scan to figure out your energy and pain levels. I find it helpful to do this at the beginning and end of each day. Knowing how you are feeling also will help you to determine what you need whether that be medicine, a cup of coffee or a nap.

6. Make a list. 
Make a list of either everything that needs to be done or literally just everything that's in your mind. Somebody suggested this to me at the beginning of my most recent flare, and I hadn't thought about it before. Often the reason that things are overwhelming is because they are all bouncing around in your head with no way to get out, and if you have brain fog like I do, you'll remember one thing that needs to be done, promptly forget it, and then remember another thing that needs to be done and go through exactly the same process with every thing that's bothering you. Writing everything down, whether in a note on your phone or just on a piece of paper, can help you to get your thoughts in order and recognize what you can control and what is just happening. It clears your mind so that you can focus on eating or sleeping or bathing, things that are absolutely necessary to your survival.

7. Take the help that's being offered if it will be helpful. 
This is another one that I happen to be terrible at. For some reason, even though it would definitely make it easier for me to walk, I refuse to let anyone carry my backpack. I don't know why I do this. It's just stupid, so do as I say, not as I do. Some help will not be helpful. The person means well, but they don't know how to help you, and that's okay. But if the help will be helpful to you, please take it. If it will help you to talk to someone, please pick up the phone. If it will help you to have someone come over to help do your laundry, ask them. Don't let your pride get in the way of you getting better. Being vulnerable is the only way that we can form strong relationships with one another at the end of the day. Yes, sometimes if you are vulnerable, you can get hurt, but sometimes, when the right person is sitting across the table from you, vulnerability can truly pay off, and you can get exactly the help that you need.

Thank you for reading, and as usual, I'd love to hear your thoughts or additions.

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.