Wednesday, June 04, 2008

Miracle Ride

I was asked to post about this, and I think it's more than worthwhile - in fact, important, considering the way cancer is too often 'not talked about' in the frum community.

Tzipi Caton was 16 when she got sick. As she put it:
I'm 21 [last week] and I was 16 when I was sick. I wrote a diary then, but started putting it online last summer when I realized what a demand there is out there for people to be able to read or ask about cancer while remaining anonymous.
So she started a blog... and quite a good one, with both heartfelt and humorous musings about her experiences. Eventually, after being approached about publishing the posts, and she decided to seek out a publisher herself. (As a nice aside, they're trying to raise money to buy copies of the book to give out to Jewish kids with cancer in hospitals, and Artscroll is giving them a discount to do so. If you'd like to help out, read this post.) It's called Miracle Ride, and bills itself as "A True Story of Illness, Faith, Humor - and Triumph". (I kind of liked her earlier idea, which was "Fighting a Tumor with a Dose of Humor", but apparently Artscroll didn't go for it.)

The book comes out tomorrow, and from a few excerpts, I think it's going to be fantastic in a number of ways - and not just for people suffering from cancer, but for the rest of us as well. I'm going to post a couple of excerpts below to check out; Tzipi will be hosting a book signing at Eichler's (click on the attached photo). One of the things I especially like about the book is the refreshing honesty that comes through in the writing - this was not written for an audience, but as a collection of thoughts and musings on living as a cancer patient in the frum world.

There are clear lessons to be learned, even just from the two excerpts below; please check them out, and check out the book as well. Excerpts on expand.
She's BALD Under That Thing!!!

Two days before Leiba's wedding was five days before Purim, and my mother needed something from the grocery that night. She sent me to a supermarket a few blocks away and I went over in my bandanna. It was nine at night and I didn't want to get dressed just to pick up a bottle of milk. I figured I could leave my house and be back within ten minutes.

I was wrong. It was erev Purim and the store was mobbed. Everyone was doing their last minute shopping for mishloach manos, and it took me just ten minutes to get to where they kept the milk.

I got a lot of stares as I was navigating my way through the crowds, but I just blushed and ignored most of them. There were some kids who pointed fingers, but I just pretended not to notice when their mothers told them to shush.

As I got in the line to pay, a lady stopped me. She was wearing some ratty old housecoat and a tichel and she had the nerve to tell me, "I don't know where you are from, but here we don't dress this way."

I felt like I had just been slapped. I turned to her and said, "It happens to be that you are lucky I'm from this community because you are setting a pretty poor example for what the people here are like. If I didn't live a few blocks away, I would probably think that all people from this place were as snobby and judgmental as you are."

The lady looked really angry when I said that and told me she wished she knew my name because she wanted to tell my school what a chillul Hashem I was making by coming out in a bandanna.

I recited my Tehillim name and told her that if she kept me in mind when she davened sometime it would be like a chessed for the day.

You were able to hear the entire store take a collective gasp. The cashiers were not doing anything, the lines weren't moving. Everyone was busy staring at our confrontation.

I boldly went on to tell her that it did not take much of a brain to figure out why I was bald and I didn't think it took that much common sense to keep quiet about it. She still had the nerve to tell me that even if I were sick, I still had to be responsible and make sure to look good when I went out. I had to get myself a nice sheitel because otherwise people would stare.

I couldn't believe her guts, so I countered with some of my own and asked her if she wanted to pay for that sheitel.

She said there were plenty of cheap synthetics out there.

I fought back and said, "Look, I'm a sixteen year old kid. You think there is a single person in the frum community who will not recognize a sheitel when they see one? What sixteen year old kid wants to be pointed at? If I'm going to get a wig, it had better be the most amazing and natural looking one on the market so that NO ONE is going to be able to tell that it's not my hair. Unfortunately there is no such thing as a sheitel not being recognized anymore in the frum world, and people like me don't spend that kind of money on those amazing sheitlach anyway.

"Instead, I am very comfortable with what I look like and what I am going through, and I am not shy to walk out and be myself no matter what anyone thinks. They are pointing at me anyway. Let them point and say, 'I admire her guts', instead of, 'Poor kid who has to wear a sheitel.'"

The woman still didn't know when to stop. She called me on the fact that I was exposing her kids to something they didn't need to see.

Oh, that got me so angry!

I asked her why it was okay for her kids to daven for me when I was in the hospital but when I was well enough to walk around, her kids should not be exposed to the likes of my bald head. If anything, her kids should be coming to visit people like me in the ward so that they'd grow up with an understanding of what they were davening for instead of being repulsed and afraid of a sick child.

I wanted to know why when I was in the hospital no one cared if I read non Jewish books in the hospital or watched movies from my bed.

I wanted to know why no one was bothered that I did a bunch of stuff that was not the usual for a frum girl in everyday life.

And then I wanted to know why it was that now, when I was finally well enough to be a normal daughter again, and run errands for my mother at such a hectic time, my bandanna was the problem.

The store was drop dead silent. I'd had enough of talking, so I just walked past everyone standing in line before me, dumped my bottle of milk on the counter, paid, and walked out.

As I reached the door, I turned back to that poor, delusional lady, and told her, "Before you make a comment like this again, get your priorities straight. And by the way, thanks for all your support."

Then I walked home and completely put the matter out of my head. I couldn't help it if people wanted to be stupid. I didn't even tell my parents. As it turned out, they told me.
So Cancer is all we have in Common….Let's get Married!

The next day, I went to school with a baseball cap on top of my sheitel even though some teachers commented that they didn't like when I did that.

Feeling so self assured because of that stupid lady incident I had taken care of the night before in the grocery store, I brought a bandanna along in my backpack just in case. I figured that I was going to just take the whole sheitel off and put on my bandanna if anyone made a single comment to me again.

Thankfully, no one commented, but at the end of the day it started pouring as we were leaving the school building. Without thinking, I slipped off my sheitel and put the bandanna on instead and walked home with my wig in my bag.

The teacher who had been quite nasty to me about the cap stood there and stared with her mouth open as my friends all walked me home.

Felt good!

Thursday was Taanis Esther and that night was Leiba's wedding.

I was so excited to finally feel good enough to dress up again and go out looking good. I spent the entire day looking at my gown and doing my makeup over ten times and then finally going over and getting Leiba's makeup artist to do it for me, and then doing it myself again.

I thought I looked amazing at Leiba's wedding, but when I looked back at pictures I realized that as good I looked, I still had a long way to go before looking completely healthy.

In the middle of the dancing, someone told me that my father was looking for me at the mechitza, so I went over to see what he wanted.

I was a little annoyed when he introduced me to my brother in law's friend, a boy named Sholmo, who was also sick with Hodgkin's. He left us to talk about what we had in common.

I felt so stupid. We cancer survivors aren't always on the lookout to meet other survivors and talk about chemo. We like to live normal lives and talking about chemo is tiresome and not what we're about.

I think people thought that two chemo patients must always be meant for each other because they have something to major in common.

I really didn't think chemo could be a common denominator in a relationship. I felt that the relationship could be a lot stronger if based on what we both got and learned from our experiences rather than the experience itself. Two people don't have to go through the same rough ride in order to make them right for each other. What makes them suited to each other are the similar perspectives on what they have gone through individually.

It was fine talking to Shlomo, but I walked away feeling he was "just another kid with cancer". I had nothing in common with him. I think my father was slightly disappointed that I didn't want to marry him on the spot.

I hoped that when it came time for me to look for my basherte, people would be understanding of the person I was despite the "damages" inflicted upon my resume because of the cancer. I thought I had a lot to offer because of what I had gone through, and I was worried that I wasn't going to be given the chance to be a normal kid because the people around me didn't see me that way.

It hurt to think of all the people out there who must be having such a hard time finding their basherte because they were being stereotyped. Cancer patients are the same as mental patients for all the people around me seemed to care or know or care to know.

I was still too young to be overly concerned with this issue, but I always wondered how people dealt with it.

Meeting Shlomo really made me think hard about it, and then later when Yossi asked what we had spoken about, I had to wonder about him. What was life like for him? He was a divorcee who wasn't either getting set up with anyone half decent. Being divorced meant that his marriage wasn't basherte, it didn't mean he was a bad person who deserved to be a second class candidate for marriage.

I was shy to ask him about it, but I was sure it was an issue for him. There had been so many times where he had said he didn't believe he deserved half the problem cases he was set up with. He said that he felt like a regular guy and he wanted to be considered one.

I'm not sure if I understood him because he made sense, or just because I was in the same situation- on the other side of the coin. When I spoke to people about this issue, many agreed with me, but still would never take that step and go out with someone they didn't think was in their league of perfect people. Then there were others who insisted I didn't see the other side of things.

Someone I once spoke to said she would never trust anyone who had an interesting background because people tend to lie about medical conditions and such. I heard what she was saying, but then again, people lie all the time when it comes to shidduchim. How many stories did I know about couples who were top kids and then after they got married all the secrets started to come out?

I knew there wasn't any right or wrong way to approach this issue, and that I was going to have to deal with it when my time came in the best way for me. But that night, even at sixteen, I felt indignant, maybe a little hurt, and also a bit sorry for myself.

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