Cancer. The disease that shall not be named. Hospitals and terminal illness are often associated with the elderly, those who have already lived a joyous and prosperous life. But what if your life has just begun? What if you are only on the brink of adulthood? What if you wake up one morning and feel two hard lumps on your neck and laugh while you force your friend to feel these lumps, the teacher in the front of the room shushing you to be quiet? What if you are just an ordinary girl in class one morning and then diagnosed with cancer the next afternoon?
This is Tzipi Caton’s story. She was an ordinary, spunky girl, until she was diagnosed with lymphoma. Hodgkin’s disease, a type of lymphoma, originates in the lymph nodes, where lymphocytes are produced. Lymphocytes are white blood cells that the immune system produces to fight disease. The disease usually presents itself with enlargement of the lymph nodes. Tzipi, a student in eleventh grade, had her whole world and perspective altered.
After reading her memoir Miracle Ride, I was jolted by the fact that although Tzipi very realistically portrayed her illness and never once was sanctimonious or preachy, I could not believe that she had cancer! She was still so normal. I wrote to her and Tzipi was kind enough to agree to be interviewed for The Jewish Press.
On your blog you describe, almost hilariously, applying for a teaching position. The interviewer who finds out you had cancer is shocked when you tell her you are married and asks you what is wrong with your husband. Do you often have to deal with such caustic remarks, where people automatically demand to know how the goods are damaged? Do you feel that this is something you encounter with the Jewish world particularly or also the outside world?
To answer your first question first – this is something that I used to deal with a lot. Lately, literally within the last five years, I feel like the Jewish community is becoming a lot more open and understanding. So many of us are unfortunately touched by illness or divorce or some other life changing circumstance, there aren’t that many people who can claim “perfection.” Today it’s impossible to believe that one is better than anyone else and that we have the right to look down on another person who is “not like me.”
This is definitely a problem in the Jewish community more than the outside world. Even the more modern Jewish circles don’t care as much about “damaged goods” as they do in the Hassidic circles. I’m not sure why this is, but I hope Miracle Ride will help bring about some changes in the way others view people like myself.
How did you and your family deal with the societal stigma attached to cancer?
My parents were awesome. They gave me the choice about whether or not we should keep my illness a secret. I was sixteen and idealistic and thought that the real stigma came from hiding the disease as if it were something to be ashamed of.
From day one I was open and honest about what we were going through and it only worked to our benefit. Being open meant my siblings could ask questions and that eliminated a lot of the fear of the unknown for them. Being open also made us more approachable for friends and family and people in the community and I never once felt that there was anything worth hiding.
In my mind the social stigma comes entirely from people making it into a problem by hiding and keeping it quiet. I never asked for cancer; G-d sent it to me. It’s nothing to be ashamed of and if anything I’m proud to have gotten through it the way I did and to have the ability to help people now because of it.
Do you often look back and wonder about the person you were before cancer? How has the illness changed you?
I am grateful every day for the person I became because of my illness. There was nothing wrong with my life or me before I became sick, but I changed so much because of it and I have to say I like that change.
I matured fast, but my sense of humor deepened. I became a lot more sensitive to other people and learned that happiness comes from within me. I appreciate small things and know that each day is a gift.
It’s hard to know where I would be today if I had never gotten sick, but all I can say is that I really like the person cancer has turned me into.
You had cancer when you were 16. This is a point in a teenager’s life when he or she is often becoming more aware of the world around them and a citizen of their community. Do you think that your experiences made you more cognizant?
Definitely. As you mentioned earlier – there were parts in my book were people said hurtful and insensitive things to me. At a very young age, I was exposed to a side of people that I didn’t know existed.
But I was also introduced to the chesed in our circles and the selflessness of people who really care.
I grew up fast because I learned a lot of hard life lessons in those few months. I appreciate that, but sometimes I look at people my age who still haven’t had to learn all the things I did and I pray that they never have to.
In the same vein, you missed out on a critical part of your childhood. Do you ever miss those carefree days? Do you wonder what it would have been like without cancer?
Nope. Maybe at one point very early on I did, but my past is so much a part of who I am today that if I imagined what life were like without cancer, I would also have to imagine what my life would be like today, without that turning point that helped shape my life and bring me to where I am now.
When I went into remission I had the choice of going back to school and continuing my childhood. If I had been eight or ten or even 12, I would have gone back. But at 16 my illness ended my childhood. I didn’t even feel that that I could go back.
So yes, cancer took away some of my carefree days, but everyone grows up at some point and for me that was just the right time.
Besides – I’m still a fun loving person and I love life and I don’t feel the need to go back because I have everything I want right nowbaruch Hashem.
Your book is written in such a happy, upbeat note. In fact, after reading it, my first thought was “I can’t believe she had cancer.” You describe a scene in your Chazak interview where even though your mother would have to give you excruciating shots every day, you still thanked her and walked off with a smile. Were you ever in shock or denial, or was cheerfulness your M.O.? Did people ever wonder how you could be so calm or happy?
I really didn’t think about it. It just happened. By nature I’m a sarcastic but funny person and I always poked fun at my life even before I got sick. So when I was diagnosed, we just laughed about all the things that weren’t really funny. It’s just the way I am.
And I had the most amazing support group! My family was great about the whole thing and I had friends who were with me every step of the way. The doctors and staff at Hackensack hospital were incredible and I couldn’t have asked for more.
When I wrote my book, I was determined to keep it happy and spunky because like I said earlier – I wasn’t just another patient – I was still the nutty teenager I had always been. I was sick of reading all the other books out there; they were just so depressing and made the reader believe that the people in the book couldn’t be real. I wanted Miracle Ride to be truthful and happy and sad and all the things I was and felt at the time.
No one just sits and cries all day. People who are facing life-threatening illnesses can also have laughs and happy moments. I wanted my book to portray that because I don’t think people out there know it.
Tell us about your scrapbook. Do you share it with other children who have cancer?
I documented my journey with my writing; but my mother took pictures and made them into a scrapbook. It’s an adorable upbeat scrapbook of everything I went through; all the scans, tests and chemos and the doctors and nurses I met, and of course, all the presents!!
We laughed so much as she put together the pages, my scrapbook could just be one of the biggest reasons we all stayed sane and happy through it all.
I do show it to new patients sometimes, it helps them understand what they’re going to be facing and it does so in a bright and colorful and non-threatening way.
In your book you describe a trip to the grocery store, where a woman, even after you told her you have cancer, proclaimed that the way you were dressed was inappropriate. This woman is obviously a paradigm of what you should not say to someone who is ill. But you describe the scene with such buoyancy and assertiveness. Why do you think some people are so insensitive?
I really believe that people don’t mean to be insensitive. They honestly feel they are doing the right thing. I think this woman felt I was truly doing something inappropriate and thought it was her duty to call me out on it. I think that what we call insensitivity comes from ignorance.
A big reason for getting my book out there was because I wanted to teach people what it means to be on the other side; to be a patient. Everyone means well, but they don’t realize how it comes across. I think if people would learn more about what patients face every day, they’d be a lot more careful with the things they say around them.
If you could tell one thing to other children who are ill and their families, what would it be?
It’s hard to say. Everyone needs to hear something else; there is no one piece of advice I can give across the board.
I would say that it’s okay to laugh and cry and be true to your emotions. Be yourself. Illness takes over your entire life but you can’t let it take over who you are inside.
Most people who have never experienced illness are uncomfortable around people who are sick. What is one thing you would tell people to do? What is something you would tell people NOT to do?
I’ll answer the NOT first. Do NOT invade a patient’s or their family’s personal space. Cancer takes away a lot of the patient’s privacy and dignity. They need your support, not your interference.
Don’t treat siblings of the patient like your personal information line. They have lives too and they want to be recognized and cared about. My sister hated it when people would stop her only to ask how I was, but walked away without asking about her.
When talking on the phone with a patient, don’t talk too long. Five or ten minutes maximum. There were lots of times were I was too polite to tell the caller that I was not up to a phone conversation and they kept going on and on for hours.
Here are the DO’s.
Listen to them, without asking nosy questions. They’ll tell you everything they want to share and what they don’t tell you is none of your business.
And if you are unsure of what you should be doing, send a card. That is never the wrong thing. A note does not infringe on anyone’s personal space or time and it’s something that a patient can read over and over again whenever she needs to. It’s a way of letting someone know you are there without stepping over any lines.
Offer your help, but don’t push. Let them know you are there and they will come to you if they need you.
Daven for them.
Tzipi Caton is the author of Miracle Ride. Check out her blog www.jacancerpatient.blogspot.com and her Website www.tzipicaton.com.
Bracha Goykadosh has written over 300 articles for various publications. She is the author of Footprints in the Sand. Look out for her second novel. Write to her at [email protected].
