Disability and Chronic Illness, Divrei Torah, Judaism & Israel

Unpredictability and Kohelet: What Ecclesiastes and Diagnosis Have to Do with One Another

This piece was originally written for a class.

During my high school years, YOLO became really popular. The idea of “You Only Live Once” is a common one while you’re young with few obligations. But we didn’t actually practice what we preached. We planned for college and the future as we were encouraged to. And we never really thought about what YOLO meant. Everything changed for me in this regard in November of 2015 during my first semester of college when I was diagnosed with my chronic autoimmune condition. Suddenly, life became divided into “before” and “after.” 

I never know what my health is going to look like in a year, a month, or even tomorrow, so I try to focus on enjoying the time I have when I feel healthy. And this brings me to my love of Kohelet, known to the gentile world as Ecclesiastes: Many people will argue that Kohelet is one of the most depressing books of the Tanakh. It talks a lot about death and the futility of all that we will do on earth. But Kohelet is actually incredibly encouraging to me in three ways: 

First, in recognizing the limited time that we have “under the sun,” Kohelet encourages us as the audience to take our moments of enjoyment into our own hands and treat them as a gift from God. 

Second, Kohelet states that we cannot change the world in any substantial way. “One generation comes, another generation goes, but the earth remains the same into eternity.” We cannot make all that much of a difference in our world. In a positive direction, this may seem discouraging, but in terms of mistakes or choices that we make, we can also be sure that those mistakes will be forgotten and lost to time shortly after we make them. This gives us permission to make mistakes, to live our lives without constantly being obsessed with the legacy that we are leaving behind. 

Lastly, and most importantly in my story, Kohelet, unlike some of the religious dogma that one may see in the internet these days, recognizes that it is impossible to be happy all the time or for all moments to be good. Verses 3:1-3:7 begin with: “A season is set for everything, a time for everything under the heavens,” and the following verses lay out a list of things that there is a season set for. These include slaying, healing, weeping, laughing, seeking, losing, and a few others. 

When one is diagnosed with a rare and confusing chronic illness, the future seems uncertain and unbelievably scary. It feels like the opening of Pandora’s box with the endless amount of stress and anxiety that can come forward, and it may feel like the end of the world. So how does Kohelet help us?: First, this book reminds us that there is time for weeping and seeking and all of the complicated and contradictory feelings that one experiences throughout the process of getting a diagnosis and immediately after. Second, while sickness may remind us of our inherent mortality and humanity, this reminder allows us to enjoy every healthy and happy moment as a gift from God or the Universe depending on which one that you personally believe in. 

There is another part of the Jewish tradition that has helped me and others with being diagnosed with our illnesses or disabilities: Much of the Torah takes place in the wilderness, also called the desert depending on how you may want to translate the world “bamidbar.” As Rabbi Eliot Kukla argues in a beautiful piece about being diagnosed with a chronic illness as a rabbi, “a chronic illness journey often begins in the wilderness of grief and loss: uncomfortable, unreliable, yet as real a home as any. Only when we accept this wilderness as more than a stopover can we begin to embrace what remains.” The Israelites built a community in the wilderness and learned some very important lessons. There is so much hope left at the bottom of Pandora’s box if we only let ourselves see it and embrace what’s good in any way that we can. Yes, we may miss the days that we were “healthy” and wish that we could be more conventionally productive, but there is so much companionship, meaning, and Godliness in this wilderness. The wilderness, the chronic illness, is not the end of the world. And in many ways, it is just the beginning. 

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“But it’s exhausting”: Self Advocacy When Chronically Ill

This morning, I had a conversation about a school excursion that I was worried about. I was concerned that it was going to be too much walking and that our facilitators would be hesitant to provide me with any real information or inform me of how much walking that the excursion to Tel Aviv would entail. When I said this, someone brought up the point that I am an adult and I need to be firm about what I need and that I need to take care of my body. I agreed with her, but I left the conversation with conflicting feelings.

  • Why don’t disabled adults get treated like adults?— I am 22 years old, but when I walk down the street visibly disabled, people treat me like I am much younger than I am (yes, I am quite short, but I look like a teen, not a child, at least). People look at me like I am a puppy who needs to be taken care of.

    Just because I am disabled, I am not weak. I am not powerless. In fact, I am pretty freaking strong. If I need your help, I still don’t ever want you to treat me like a child. Rather, think about how you see a pregnant woman (which in some way is a temporary disability) or a friend who has the flu. You don’t see them as any less of adults, why do you see me (or any other disabled person) as immature or young.

    If I need your help, I am a grown up and I can ask for it. When I need someone to carry something up the stairs, I ask them to do so. If I need to stop and take a breath, I will do so. I have been living with this disorder for 22 years of my life. I can assure you that I know my body better than you do (also, rule of thumb: if you can’t pronounce the name of my disorder, you have no right to define what it looks like for me)
  • Self Advocacy is freaking exhausting–Before I begin this point, I want to note that I am not arguing against self-advocacy. I helped to run a movement at Brandeis that was all about empowering people with disabilities to ask the school for what they need.

    I have made it very clear to pretty much everyone around me that I have limitations on what I can and can’t do, and when it is necessary, I have even mapped out those limitations. It is then frustrating to me when people seem to forget about those limitations or choose to ignore them entirely–noone is under an abligation to know everything I can or can’t do, but it’s lovely when people do remember (or make a note to themselves to remember).

    Asking for accomodations from a professor or institution at the beginning of a semester or year is totally acceptable, you can’t read my mind. But having to remind people over and over is exhausting and unacceptable. I have enough chronic fatigue and brain fog as is just because of my disability.

If you are an abled person reading this, you may be thinking that advocacy is not that hard. You may be thinking that these things shouldn’t be that hard for people to understand, but unfortunately, I’m not alone in having to beg over and over for accommodations that take very short periods of time.

So what can you do to help? Advocate for your disabled friends if they are okay with it–I had a close friend ask a professor if I could join a group that was doing less walking last week and I nearly cried with relief (Thanks Jamie), and I also had a friend a while back who asked about accessibility information so I didn’t have to (Thanks Rebecca). Ask some of the questions that you know your disabled friend or family member is thinking about, and when you are planning something, anticipate those questions. Also, please be kind to us; we may argue with you because the world has beat us down a bit, but we still really, truly appreciate it.

Journaling, Judaism & Israel, Personal

Forgive Yourself: A Poem for Yom Kippur

TW: Self Harm, Diet

Forgive yourself
For hurting your body
For tearing it apart with words, diets, and rusty blades
For forgetting that you only have one precious life to live
Approach it with tenderness
As God does

Forgive yourself
For old mistakes, slip ups, and missteps long forgotten
For not escaping prison when you had no tools to do so
For needing to grow
Learn from the past
God is present for you

Forgive yourself
For losing hope
For not letting yourself feel your feelings
For not letting yourself “need”
Be gentle, my dear
God loves you

Come into acceptance of the past, present, and future
With understanding of your limitations and your power
It’s alright to be afraid.
So long as you don’t let life pass you by.

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The Taste of Memories: What Crembo Means to Me

Anyone who has lived/visited Israel during the winter months of the year knows what a Crembo is–a cookie with marshmallow surrounded by a delicious coating of chocolate. But to me, a Crembo is more than just a delicious treat.

At some point during my freshman year of college, our Hillel Associate Director acquired a stuffed bear who she named after the head of Starbucks. Somehow in tangent with this, she started having Crembo Court where she would sit in the Starbucks in the library and just hang out with us. Three stories:

I have often disliked my birthday. For a number of personal reasons, March is a difficult month for me, and I usually just want to finish it. But one year, my friends (and Cindy) had other plans. I arrived at Crembo Court, exhausted already from classes, and I was created by the scene below and all of my friends saying happy birthday.

Schultzy the Bear and a Crembo with a candle stuck in it

Second. I had finally been freed from Hadassah Ein Kerem. Having not slept or eaten in three days, I was cranky and upset. The first thing I did when I returned to my apartment on the other side of Jerusalem was open a Crembo. There is nothing more comforting than the crinkling sound that the foil makes as you unwrap it.

Third. Today. My dysautonomia is acting up and I’ve spent the last number of hours cleaning the apartment with my roommate. I sit here with a Crembo. My life has drastically changed from that first time that we sat at the high chairs in the library Starbucks. I’ve grown up a lot. The people who were once strangers or acquaintances became friends that I couldn’t imagine my life without. I may have had more “sick” days, but I’ve also gained wisdom.

It’s interesting to me how the past and the cyclical nature of life can bring forward memories. Crembo is not just a cookie–it’s my friend Max and I walking over to the library together from class and arguing about service leading, it’s the skills I learned by leading High Holiday services at Hillel, and the days on which Cindy handed me a Crembo with tears streaming down my face. There are some things and people that will forever be a part of this story that I am living. We can’t know what our experiences will mean to our future selves until we let time pass and move forward in our lives.

Blog Elul

Blog Elul Day 26: Bless

Warning: This is going to be a bit sappy.

This afternoon, I sat around with friends and I was talking about how many people I am blessed to have in my life. The mentors (especially Cantor Tamar Havilio, Rabbi Sara Zober, Rabbi Andrea London, and Rabbi Stephanie Sanger-Miller) these days who stand by me (whether virtually or in real life), lending me a sympathetic ear through all of the trials and tribulations of life, and calling me out when I need to be told things that I don’t want to hear. The friends who listen to me complain for hours, laugh with me, and provide me with a safety net so that I can take risks. The doctors who devote lifetimes of research to figuring out exactly the best way to deal with my condition.

I used to hate the saying, “count blessings, not problems,” but now I’ve reinterpreted it. It’s not about the problems ceasing to exist. Rather, it is about focusing on all of the moments in the day that we can be grateful for.

May you be blessed with a sweet new year.

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Blog Elul Day 25: Change

When one gets diagnosed with a chronic illness, the whole world feels as if it may be changing, as if there is no solid ground under your feet.

Your priorities change–yesterday, our professor asked us if we would rather do our hebrew exam take home or in class and I just shrugged my shoulders. Why? Because when one is sick, one has to think about so many more things that a Hebrew exam seems relatively inconsequential (although I clearly studied anyways). The minor issues of life seem to change to being “no problem” when one has spent days crying in doctors offices.

Also, the people around you often change. Too often, those friends, family, and role models with abandon you when you get diagnosed. It’s an unfortunate fact. But it can be seen as a positive change. The people that I have gotten to meet and interact with because of my illness are incredible–the ones who sat with me as I cried after doctors appointments or didn’t run away scared when I passed out, or even advocated for me when I didn’t have the strength to do so. These people are the best change that has come with my diagnosis, and while I won’t with disability on anyone, I will hope for you that you get people as incredible as the ones I have.

Blog Elul

Blog Elul Day 24: Hope

Each word I type, each text I send is a hope and a prayer
For a future that i want, that we want
But the coming days are a blur
So all I can do is hope.

Part of my mission in life is to help bring hope to the hopeless, to be able to reach out to someone who is struggling through childhood (or life in general), and give them just a little idea of the possible future that they will have if they keep holding on. It is never a bad idea to keep looking for that light.

I know what it’s like to feel hopeless, to fall on my knees in desperation calling out to God with my whole heart and soul. In fact, I was without hope last year on High Holidays while praying that I would get answers from my doctor. But there is always a light to be found, no matter how hard things seem right now, no matter how stressed or overwhelmed you are, there is hope. I was lucky enough in my darkest times to have people who helped me to find that hope again, and for that fact, I will be forever grateful.