Wednesday, March 4, 2015

Sickness in the Brain: A Juxtaposition

Reflection During National Eating Disorder Week

by Chaya Jundef

It’s National Eating Disorder Week … A time which I usually celebrate.  Ironically, I spent much of the week in bed due to a serious brain infection.  All the resting hours have given me time to think…and think…

During the last week, I have been enveloped in love. From the moment my brain infection was diagnosed, family and friends came running: Can I help? Do you need supplies? Can I stay with you in the clinic?

The doctors treated me respectfully; reviewing the diagnosis and treatment options. The nurses were kind and happy to converse. My employers were understanding, and insisted I take off work. I was a PERSON, not an illness.

NO one said:
• What did you do wrong to get a brain infection?
• Why don’t you just get rid of it?
• If you try hard enough, the infection will go away on its own.
• It’s really selfish of you to develop a brain infection.
• This infection of yours is ruining your family.

And while I appreciate the kindness this week, my heart hurts. It hurts because I can’t help but contrast this reaction to my experience of 15 years battling a different type of brain infection….called an Eating Disorder.

During the years when my brain was “infected”, the reactions were not so kind. I experienced constant rejection:

• I was fired from my job of 8 years, where I had invested unlimited passion, after my boss discovered I had an eating disorder.

• The director of a National Youth Group (for which I volunteered 12 years) refused to allow me on the bus because, “You don’t belong with children” even though I had organized the entire trip.

• I vacationed with 4 girls in Miami who heard about my eating disorder while I was strolling outside. They placed my luggage on the porch, and locked me out of the house. I spent the rest of the vacation alone in a small motel.

• I was kicked out of the Israeli camp that I was directing after a friend told the owner about my eating disorder.  I wandered the streets in Israel for 3 days because I was too embarrassed to tell anyone….tired, dehydrated, lonely…. I finally boarded a plane to America and stayed in the airport because my parents wouldn’t allow me home. I had nowhere to go.

And then there were the comments….can I ever forget those hurtful comments?

Friend: “You need to try harder. Everyone can eat. So can you, if you try hard enough.”

Rabbi: “You know that you will go to Hell for destroying your body.” (Thanks, but I’m already experiencing Hell just living with an eating disorder.)

Neighbor: “I cannot allow you to enter my home because I have children, and you are contagious.”

Random Lady: “I never saw someone with so little hair. Did you just have chemo?” (Do you think I would tell a random stranger even if I did?)

Cousin: “You know, you were a pretty girl before you developed this illness.” (And now I’m just ugly?)

Aunt: “You destroyed all your chances of getting married.”

Principal: “You cannot have any communication with your students anymore, even outside of work. You are not a proper role model, and the students might catch your disease.”

Sister-in-Law: “Ummm….so I read about this THING that you have….and um….don’t worry, this THING doesn’t bother me.” (Thing = eating disorder…why can’t you just say it?)

Relative: “You know that your father’s hair turned white because of you.” (I loved my father, and his pain just increased mine.)

Rabbi: “You obviously are not a good Orthodox girl. You are trying to adopt secular culture, which idolizes fashion. You need to get this nonsense out of your head.”

Sister: “You are embarrassing me in front of all my friends.”

Sales Clerk: “What is wrong with girls nowadays? Are you trying to compete with the mannequin?”

Young Woman in Social Work Grad School: “It’s really interesting to speak to an anorexic. I mean, I learned about it, but you seem normal…… I recently read in a textbook that eating disorders are related to abuse. Were you sexually abused?” (Umm...does she honestly think I would discuss that with a stranger???)

Matchmaker: “You’re making it very difficult for your siblings. No one will want to marry someone whose sister has an eating disorder.”

Brother: “I have an idea. Let’s put you in a room with a tape recorder that says, ‘eat spaghetti’. And if you listen to it all day, you will start eating!” (Guess if that worked…??!!)

Friend:I wish you could teach me how to be anorexic for 2 weeks.  My sister is getting married, and I must lose weight before the wedding.”  (Should I also teach you how to have cancer? Or diabetes? Or lung disease? It’s so cool to know that illnesses can be TAUGHT.)

Principal of My High School (where I had been a star student, despite fainting numerous times) after I told her that I suspected a student had an eating disorder: “No student in this school has ever had an eating disorder. We are a respectable institution.” (Umm…So, I DIDN’T attend this respectable institution? That’s strange because my picture is hanging on the wall.)

Relative: “Do you realize how selfish you’re being?” (Do you have any idea how much I care for others, and how much I struggle to do anything for myself??)

Employer: “I suggest you teach boys instead of girls. Your illness won’t be contagious there.” (Because NO MALES develop eating disorders…???)

Friend: “Why are you trying so hard to look like a model?” (I had never even seen a model! I grew up without television or movies.)

Biology Teacher Who Saw Me in Hospital: “It would be interesting if you could come to my class. I could teach my students the entire human anatomy just by looking at you. You can see every bone protruding, even your ribs.” (Should I have agreed and charged for the lecture? Great idea for a future career…)

Social Worker Assigned to My Case: "So, you are an Orthodox young woman. I assume that your illness is your way of showing that you feel constrained within your religion." (No! No! NO! I only stayed alive because of my faith.)

Nutritionist Untrained in Eating Disorders: “So, have you been behaving good this week?” (Wow. Isn’t it great to know that my symptoms make me good or bad?)

Another Nutritionist Untrained in Eating Disorders: “So, you tell me that you’re not afraid of eating ketchup.  In that case, I want you to eat 4 cups of ketchup daily – 1 for each meal and 1 for snack. It makes no difference what you eat as long as you get calories.” (Honestly. And I followed instructions…until I got physically sick.)

 Nurse: “I can’t believe anything you say. I read that all anorexics are manipulative liars.” (Sure, because I'm just a textbook case. Do you know anything about my core values? How much I treasure honesty?)

Direct Care Worker: “I had plans for the weekend, but now I’m forced to work because a spoiled brat like you refuses to eat, and needs an adult to sit next to her by meals. It’s pathetic.”

Passerby: “Hey, Anorexic, get into hospital.”  (Yup. That’s me. I have no name or identity.  Just “anorexic”.)

Relative: If you really wanted to recover, you would go for treatment. You clearly don’t mind being sick.  (Do you know that I have been on a treatment waiting list for months? That I have to fight for insurance for any form of help?)

Friend: “You’ve done this long enough. Stop already.” (Oh. That's easy.)

Acquaintance: There are some people who are REALLY sick, like with cancer. They probably wish they could switch places with you. (Okay, let’s try it. I’m not sure they would agree once they experienced a day in the life of an eating disorder.)

Relative: “Don’t you think you already got enough attention? How much longer are you going to do this?” (I guess until I get MORE attention.....seriously, do you notice that I hide my symptoms? How embarrassed I am of my own behaviors?)

Aunt: “Your ED program sounds great. All you do is sit around all day, and meals are served to you. I wish I could have such a vacation. Stop complaining, and appreciate it.” (You’re right. I can’t believe I had the audacity to suggest treatment is hard.)

Matchmaker: “You have to be realistic about who will date you. I can suggest a paralyzed young man with cystic fibrosis, who can’t have children, and is missing one ear, but is WILLING to date a girl with your history.” (True story.)

Matchmaker # 2: “There is a man who is in his mid- 40s. He is currently unemployed and doesn’t look at women because he is really religious. I think he would be a good suggestion for you because he is obese, and you can teach him how to lose weight.” (Another true story.)

I would like to say Health Care Workers were better, but most were not educated:
• My pulse was below 40 one Friday…I went to the ER for help…after waiting for hours, the doctor said, “We don’t treat people like you. You need a psychiatric ward. Better yet, go home and eat some chicken soup with matzo balls.” Shabbos had already begun, so I explained that I couldn’t take a cab. He responded: “So walk”. Never mind that I was too weak to stand, and it was 10 degrees below zero.

• When the nurse tried to inject my first IV, I retreated in fear. She yanked my arm in frustration, pulling so hard that my shoulder was wrenched out of the socket, and left that way for nearly 24 hours. After all, I was just a crazy psychiatric patient who was overreacting. 


What can I say? My brain infection lasted 30 days. It was not terribly painful after the first few days of antibiotics. But, my eating disorder lasted 5, 475 days. Yes, five thousand, four hundred and seventy five days. Torturous days. Lonely days. Days where I prayed at night that I shouldn’t wake up in the morning b/c I couldn’t face another moment of this agony. Days where I sobbed and sobbed because I was so misunderstood, and the comments pierced my soul. And days where I didn’t cry at all because the pain was so great that I shut down completely.

I received concern and access to top treatment for one illness. And rejection, scorn, and impatience for the other.

But they are both brain infections, aren’t they? An eating disorder is also an infected brain…

I thank God for the miracle of the brain to rejuvenate. To heal. To start again. But my brain remembers. It remembers the rejection, the comments, the pain. And my heart remembers too. The brain healed, but my heart didn't.

I do not write from bitterness. No, I write from a deep desire to educate. To teach. To change. Why is a brain infection different than an infected brain? Why is one illness more deserving of care than another? Why aren’t people with eating disorders treated with the love and compassion that they deserve?

Some days I want to climb the Empire State Building, the one that is currently lit in color in honor of NEDAW. I want to cry out to the world, “I had an infected brain. But I AM NOT infected! And neither are the thousands of men and woman struggling around the world.”

Brain infections are real. Even the ones you can’t see on an MRI.

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