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.

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.

Saturday, February 10, 2018

Busses, Mechitzot, and Cabbage: Finding Moments of Comfort in the Uncomfortable

Last night, for Kabbalat Shabbat, I sat in an Orthodox synagogue, a place where I would usually be very uncomfortable, and walking into the room and seeing the mechitza(the curtain that separates men and women) and sitting down in a room full of people speaking a language that I don't know all that well, I was quite uncomfortable. I felt like I didn't belong there, but then they started singing one of the first psalms of Kabbalat Shabbat, and I recognized the tune--this experience partly just shows the universality of Shalom Carlebach's music--it was a niggun (a song without words) that we had been singing at camp for my whole life. In that moment, I felt just a little bit more comfortable in that uncomfortable moment.

My time in Israel in general has been filled with lots of things that make me uncomfortable and anxious. Sometimes these are things I see: some Chasidic Jews trying to block off the main road that I was walking along last Shabbat. Sometimes these are things that I hear: one of the people who was head of the creation of the security fence along Israel's borders. But more often it seems, it's the little things that are different about this place that make me uncomfortable. This may sound silly, but one of the things that has made me the most uncomfortable since I've been here is the Israeli eating schedule--people eat a small breakfast, then a sandwich at 10, and then lunch at 2, and yet another one has been the fact that the work week here is Sunday-Thursday.

Yesterday I had many experiences, big and small, that made me anxious and uncomfortable, yet I am so glad that I had the strength to push through those experiences and find the joy that came from the results of them.  One of these experiences was going to the aforementioned Kabbalat Shabbat service. But let me give you a few more examples: I love going to the shuk (the outdoor market in Jerusalem), but no-one wanted to go with me at 8 AM on a Friday morning, so I decided that I was going to fight my anxiety and go by myself. And it was a profound, almost spiritual experience, pushing through the people with their carts, smelling the fresh baked challah, and taking in the bright colors of all of the fruits and vegetables. In that process, I managed to find my favorite restaurant in the shuk (which is a true miracle because I have no sense of direction whatsoever), and eat the same thing that I got on my Birthright trip last year, providing me a little bit of comfort in a sea of discomfort and people yelling in Hebrew.

Let me preface this next experience: one of the things in this world that makes me more anxious than anything is public transportation. I didn't grow up taking it, and I still have barely ever taken it alone (with the exception of the Metra in Chicago which really does not count). But yesterday, to get where I was going for Shabbat, I needed to, with the help of my smart phone, take two buses and walk three blocks. This was scary to me, partly because unlike in the States, I don't know the language all that well, so even if I did get up the courage to ask someone for directions, there is a possibility that I wouldn't be able to understand them--also I am terrible at keeping my balance on buses. This made me uncomfortable, so I put my headphones in and played some of my favorite nerdy songs, providing me a little bit of comfort.

This last miniature experience of uncomfortability may seem the most ridiculous to you, but I think it may have taught me the most. I had never eaten cabbage before. Don't ask me why; perhaps my mom doesn't like it? But at dinner last night, when the roasted cabbage got passed to me, I took some because the smell reminded me of my mom's brussels sprouts and that made me feel comfortable with this unfamiliar food. And I ended up liking it.

This is what I've learned: sometimes, you have to push through the resistance and anxiety in your mind and do new things because, like the two buses, they may lead to an incredible Shabbat experience, or like the cabbage, they may lead to a new food that you like, or like the prayer service, they may lead to a realization that people aren't as different from one another as you thought they were. Life is about learning to sit in the feeling of being uncomfortable and taking risks, and maybe you will find a moment of comfort in it all.

Monday, January 29, 2018

Pain in the Present: Living History In Israel

The sun was shining in Tel Aviv, and the hard granite of the Trumpeldor cemetery was pressing into my bottom, but at that moment, every joint in my body ached, and my spine felt like someone was scalding it with a hot poker. We sat there, by the tomb of Arik Einstein, one of the most influential Israeli musicians in history, listening to one of his most famous songs, Uf Gozal, and I found myself crying behind my dark sunglasses. Here was a conflict between the past and the present.

The unfortunate truth about pain is that it requires in itself, a presence. When something hurts, it's like a notification on your phone that won't go away no matter how many times you press the clear button. You try to breathe through it, but it doesn't do anything. The worst part of pain like this is that you wonder whether you'll ever feel better again, but that's talking about the future, and I'll get there in a second.

Uf Gozal, which is about a bird leaving the nest, a metaphor for Israeli teenagers leaving home to serve in the army, is a song of the past and a song from my past. When I was in high school, I listened to this song over and over again. It wasn't because I resonated with the words; I don't think I knew what they meant. I resonated with the emotion contained within them. There's so much more to be said about the power of music and memory, but that's a different story. In that moment, feelings from the past and present overwhelmed me in that moment.

Half of me wanted so badly to focus on the melody of the song and the words of our tour guide, but every few seconds, the pain would reassert itself, essentially saying, "pay attention to me. I don't care abut what you're supposed to be thinking about; I am your present."

Israel is a place of living history. It's a place that combines past, present, and future, and so did that moment. Israel is a place where you can stroll down the streets of Jerusalem wearing Beats headphones. The present in that moment in the cemetery was a profoundly isolating experience, and the future was terrifying, but the past, at least in that moment, was comforting. The past can teach us something even with pain in the present, and even looking in retrospect. And I'm excited to keep on learning from it because I know that there is a future for me even when I don't feel like it.

Sunday, January 14, 2018

By Holding Hands and Marching Together: A Jewish Case For Fighting For Justice

"What happened to this world? We just don't know anymore. What happened to this world? We just don't love anymore. Who gon' do it, if we don't do it?"
-Muddy Magnolias

Sitting in the sanctuary of my home synagogue listening to my cantor and an incredible guest singer belt out these words, I felt a strong call to action. It was something almost visceral. And I was reminded of the famous quote from Rabbi Hillel, "If I am not for myself who will be for me? If I am only for myself, what am I? If not now, when?" and yet another quote from Pirkei Avot, "You are not obligated to complete the work, but nor are you free to desist from it." So what does that mean for all of us on January 14th of 2018? These quotes call us to recognize the urgency of the time we are living in, to stand up for one another, and to fight for justice. 

In his speech at Beth Emet Synagogue in Evanston, IL (my home synagogue) on January 13, 1958, five years before the I Have A Dream speech, citing to a common psychological principle of the day, MLK Jr. discussed the need to be "maladapted" to our surroundings. He said that we should not just go along with injustice, bigotry, hate, and hostility, but we should be uncomfortable with it. That's a call that still rings true today. I have generally been avoiding the news, but from the little I do hear, Trump has said something outrageously racist again, Kellyanne Conway is denying that the new tax plan disproportionately affects people in the lower tax brackets, and it is still common for employers to pay disabled workers or female workers less than one would pay a male worker. We cannot see these circumstances as normal, even though news like this comes out every single day. 

You may be saying, but the problems going on in the current political climate aren't directly affecting me; why would I take time out of my Saturday to go to this march? And to you I say this, Deuteronomy 10:19 reads, "You must love the stranger because you were strangers in the land of Egypt." Even if every person who is affected by the new tax code or the comments of our president is a stranger to you, as Jews, we still have a duty to protect and love. We still have a duty to stand up for the values that we were commanded to hold close to ourselves. 

So what does this have to with the Women's March Boston: The People Persist? This march is a way to answer the calls to action from Hillel and Pirkei Avot. It is a way to "love the stranger" and to "love our neighbors," both of which are core Jewish values. It is a tangible thing that many of us can do. It is a way to honor the Jewish value of Tikkun Olam, repairing the world, and the memory of Dr. Martin Luther King Jr. I wish I could be at the march, but I will be in Israel for a semester abroad (keep an eye on this blog for updates), and I'll be marching with you in spirit.

A Note on Shabbat: I cannot make a Jewish argument for going to the Women's March without recognizing that it is on Shabbat. From my perspective, participating in the march does not in itself violate the spirit of Shabbat, but I acknowledge that some Jews may feel differently. If this is you, the issues are still yours. Even if you choose to go to the next protest that falls on a Wednesday or support the cause with your dollars, you are still fulfilling all of the same values as those who are able to go to the march (The same goes for if you are not physically able to get to the march or you have a conflict on that day).

I leave you with a reading from the Miskan T'filah, the official prayerbook of the Reform movement:
"Standing on the parted shores of history
We still believe what we were taught
Before ever we stood at Sinai's foot, 
That wherever we go, it is eternally Egypt
There is a better place, a Promised Land
And the winding way to that promise passes through the wilderness
And there's no way to get from here to there
Except by joining hands and marching together."

Sunday, January 7, 2018

New Years Resolutions 2018

I know it's been a long time since I updated this blog, and for that, I sincerely apologize, but the good news is, in the coming year, I will be publishing much much more, especially because I will be attempting to publish every week while I am in Israel this coming semester. These blog posts will be about anything I have found interesting in the week or really anything else, and I hope you will continue to read.

Now, onto my New Years Resolutions. I have a hard time with New Years Resolutions. I often feel like they are empty promises to myself that I never end up keeping, so this year, I'm going to make them public with the hope that being accountable to other people will help me to achieve my goals.

1. Drink 2 Bottles of Water a Day
I've been harking on and on about drinking water without doing it myself, so I figured, I might as well make a change. Water can help with headaches, muscle pain, and pretty much any physical ailment that you can think of, so why wouldn't I try to drink more of it. I'm also tracking this on with the hope that it will make me more effective.

2. Write Something Every Day.
I've written about journaling before, and I just want to reiterate how much better it makes me feel. It's like having a friend to come home to at the end of the day, but that friend is always there and never judgmental.

3. Read 12 Books in 2018
I read maybe 2 books in 2017 that weren't for school, and I want to change that because I used to be someone who read a book a week. Now, I don't think I'm going to be able to read that much, but I am making my goal one book a month.

4. Practice Gratitude Every Day
There's been studies done that show that writing down three things that you're grateful for every day can make you happier. I'm trying that in 2018.

5. Cut Down on Using the Social Internet
Scrolling through social media makes me happy for about the first fifteen minutes that I'm doing it, but after that, it just makes me anxious and encourages me to compare myself to others, something that is definitely unhealthy, so I'm trying to cut back on that in 2018. We'll see how it goes.

What are your resolutions? Drop me a comment and let me know! Happy New Year!