Cancer, My New Companion

Mammogram is done. They want to do ultrasound now. I’m a little bit shaky. Am I scared? I can’t name my feeling but I’m very cold. They take everything away from me, my bag, my clothes, my shoes … but I hold on to my phone hard. The nurse asks if I want to put my phone inside my bag. “No! my husband is texting me.” She smiles.

A few minutes after the ultrasound, the nurse comes to the room and says the doctor wants to do a biopsy now! “Now?! Right now? But I need to tell my husband first.” He comforts me as usual.

I squeeze my phone as hard as I can. Biopsy is a painful procedure, but as long as they don’t take my phone away, I’m OK. I’m lying down on the bed and they push needles into my breast, I just squeeze my phone, as though it’s my husband’s hand. Oh! Sue Johnson is right! It works. I smile and I think about the “Soothing the Threatened Brain” video.

The nurse avoids eye contact with me. The doctor doesn’t seem happy, but my phone vibrates, it means he sent me another sweet message. I’m not alone!

After biopsy the nurse asks me to meet the doctor in the consultation room. I know what that means. I wonder how bad it is. I can’t walk, I feel my knees are like playdough. I don’t want to cry, I don’t want to faint, I need to be strong. I walk very slowly. I’m sitting in the consultation room and waiting for the doctor. How many people here heard that they only have one more year, six more months, three months? How about me? I am very busy. I don’t have time for cancer.

The doctor comes in. “I have good news and bad news… It’s cancer but it’s curable….” I don’t hear the rest.

I think about my boys, they are 19 and 14. How should I tell them? What will happen to them? It is curable, I am not dying, but will I traumatize them? I am a psychotherapist! I should know how to handle this situation. How about my clients? How will they handle it? My family, my friends? I hate this. I don’t want to bother anyone with this news? I won’t tell anyone…

I won’t tell anyone… I won’t tell anyone… every time I repeat it, I feel more and more power. I feel calm, I feel in control, I feel numb … no more fear, no more shame or even sadness. This is a secret between me and my family. Everything seems fine. All emotions are gone. I leave the hospital feeling strong, powerful!

I keep the secret for two weeks. Even my mom doesn’t know. My husband is my rock, my boys are strong and happy. Everything is OK. I just don’t understand why I am angry all the time. That’s the only feeling that I have now.

*****

          I have a dream. I am in the middle of a war, I am scared, I can’t move. I see people but nobody can see me. I try to shout but I cannot, nobody hears me. I wake up sobbing. Oh my god! What am I doing to myself? Am I scared of my emotions? I am trying to hide them, numb them. By keeping a secret, I am protecting myself from being emotional. Now all my emotions are turning to anger, because I can’t deal with them.

Human connection has been the biggest value in my life. Why do I isolate myself? Cancer can knock my body down, but not my soul. I won’t let cancer make my life miserable. I’ll make the best of this experience. I am going to talk about it, write about it. Laugh at it! I’ll use my cancer for a deeper connection with my family and friends. I decide to share.

*****

          As soon as I let my friends and family know, I am surrounded with love, flowers, cards, fresh food, supportive messages… and I feel overwhelmed.

Why is helping others so much easier than asking for help? Maybe one always needs others to think that all is well. No need for help. Maybe I’m scared of being vulnerable. I remind myself, “vulnerability is the birthplace of love and connection.” My sorrows echo in the life of others, that’s how we connect. I don’t need to impress people by being strong. My vulnerability is my strength.

I discover many beautiful people around me. Ordinary people who make me feel loved. People who accept me the way I am. They let me be mad, scared, anxious, powerless, but still loved. The moment I talk, fear goes away through the window, love and connection come through the door.

I deeply believe any trauma is an opportunity for growth. Illness, losing a loved one, divorce… help us learn so much about ourselves.

A traumatic event becomes a trauma when I deal with it by myself. When I am surrounded with loving people it becomes a life experience. I never thought that I could see cancer as a gift. My cancer changed my life in a good way, made me a better person, helped me appreciate my life and my world and helped me learn to live in the present.

Does love heal cancer? I am not sure, but love definitely makes it a unique experience I could not have otherwise. Love does have the power to heal.

*****

          I can’t control my cancer but I can control how I deal with it, this is the deal, the cancer’s job is to make my life miserable and my job is to make the best of this experience. I’m excited to see how this game goes! I know we both will win! Cancer may knock my body down, but not my soul.

*****

          The surgery is canceled for this week. They found a new tumor. We don’t know much about it yet. I feel powerless, scared and helpless and, of course, at the darkest moments, I feel lonely, then I reach out. The moment I talk, fear goes away, love and connection come in. It’s really hard to talk about your fears. It seems like a big risk every single time. But every time, it turns out more gratifying than I ever hoped. Vulnerability is the key to joy.

*****

          The world is full of nice people. I deeply believe our world is filled with loving, kind and nurturing people. Sometimes people act mean because they are wounded, they don’t know how to deal with their pain and they hurt each other, but even those people become kind when they feel safe.

*****

          My Genetic test is negative! Yay! Ready for the surgery!

When I heard the result of my genetic test, I cried. More than anything I was happy for my boys and also, the fact that I might not need chemotherapy and there is less of a chance for it to come back… My boys were happy for me, they got me flowers, my husband said we have to celebrate. He hugged me and said I love you, I love your mom and your dad and their genes, I love your ancestry!

We were laughing and excited and suddenly I said to myself, “wait! It’s not my parents’ fault. Does it mean I did this to myself?! Did I create this cancer in my body?” I felt sad, I felt shame and guilt. Oh boy! That’s why Brené Brown says, “Joy Is the most terrifying, difficult emotion”.

*****

Focus on here and now. Who started this? Buddha? Zoroaster…?

In past years I learned a lot about this, but honestly, I never practiced it like now. Maybe I didn’t need it as much. I had a routine life and it was not out of my control. It seems cliché but it really works.

Do I need chemotherapy? I still don’t know, but I feel it’s not my business anymore. My business is focusing on today.

I’m happier than ever. Yesterday two people told me they were exactly in my situation and they had had to undergo the most aggressive chemo, but it didn’t bother me. I was sorry to know they went through that tough experience but not for myself. I know I’m ok today and that’s enough for me.

I’m telling my clients that I can see them today without any promise for our next session and surprisingly they are fine with that. I feel very present in my sessions. This is all new for me.

*****

          Some friends are concerned about me when I talk about focusing on here and now. I appreciate their concern, it shows me how much they care. Living in the moment is a complex concept. It doesn’t mean that I give up or I’m in denial.

Cancer is a scary disease. I was fearful and I’m happy I was. Fear has a valid message for us, “you are in danger, take care of yourself!”

Living in the moment didn’t prevent or delay me in taking the right decisions and actions for my own good. I consulted with many doctors and surgeons, I researched and I talked to many cancer survivors, maybe more than I should have. I put all my information together and made the best decision.

Living in the moment, the here and now, made me a happier person, helped me bring back under my control areas where I could have had any control.

Living in the present doesn’t mean I don’t think about my future, it means I am aware and conscious of what I am doing, feeling, and thinking, at the present moment.

I believe love and connection is the greatest healing for our body and our soul. So, I let my doctors take care of my body and I take care of my mind. I want to trust them in spite of all the limitations I know they have. They are human and they make mistakes for sure, but I need this trust, because they know more than me. I just accept our world, imperfect as it is.

When I am frustrated by waiting and waiting and waiting … I invite a friend and we make a collage together. I enjoy it so much.

*****

When I’m scared please don’t ask me to be brave. Don’t tell me it’s not scary.

Don’t ask me not to worry. It makes me feel like I’m not enough.

Don’t try to change my thoughts and emotions.

Don’t give me advice about how to change my lifestyle. It makes me feel like it was my fault.

Don’t minimize my experience, it makes me feel weak.

Come with me to my darkness, sit with me and hold my hands. Tell me I’m not alone, you are with me. Tell me it’s ok to be scared and let me be myself. It’s ok to tell me you are scared too. It’s ok to tell me you don’t know what to say. It’s ok to show vulnerability.

Your genuine expression of care is the best gift. Love has the power to heal.

*****

Surgery was successful!

I deeply believe we cannot survive without love and emotional connection. We naturally seek the companionship of others as part of our wellbeing. We are wired for connection.

My mom used to say, no matter what you have, you need health for happiness. Now I believe, even if you lose your health, if you feel love and loved, you can be happy.

Reaching out, taking someone’s hand, crying on someone’s shoulder, laughing out loud with someone, walking together in silence… that’s happiness.

Having cancer has been an amazing experience, and I’m deeply grateful for my family and friends and for every minute of this experience.

I am still wrestling with my cancer but I am having fun too. I am getting ready for radiation therapy and the pills for ten years! I am not happy about these hassles at all. But something in my heart tells me ‘you will be ok, Jila!’

*****

          Radiation sucks! I feel physically and emotionally drained after each treatment. Every day you go to a room that has “danger” signs everywhere. You need to lay down under a huge machine and you don’t know if it is supposed to kill you or heal you and for at least 30 minutes you just think about cancer. It’s depressing. I thought that I needed to do something new to boost my energy level and I saw a Belly Dance lesson flyer! That was the last thing that I had thought of trying but I did it and I loved it. It’s a rich, meaningful and fun dance. Cancer opens new doors.

******

Last day of my radiation!

It’s hard to believe it’s over. It was almost four months but it feels like years. Unlike any experience I have ever had. Painful, scary, sad, eye opening, exciting, full of love and closeness …. deep, deep, deep.

I am a proud survivor!

I feel nothing can bring confidence and trust in a relationship more than going through a trauma together and come out successfully. I’m proud of my choice for my life partner.

I am proud of my boys. They didn’t let my illness affect their lives. They allowed themselves to be happy while I focused on myself.

I am a very proud mom!

My family, my friends, neighbors showed me what support means. What a real friend means. They taught me how to be vulnerable but still feel loved, to need but not feel needy, to have pain but not suffer.

I won’t change this experience with anything in my life.

*****

          I am done with my treatment. Everybody congratulates me except myself. What’s wrong with me? Why can’t I be excited. My body is tired. Maybe I don’t have energy to celebrate my victory in this battle. There is a voice inside of me that bothers me deep down and I don’t want to hear it. It tells me I am not old Jila anymore and I can’t be, ever!

I am a cancer survivor. This title will always stay with me. It will be part of my identity. How sad! It makes me angry. I want to be myself, my old self. I think it is like age. When you are 20 you can’t be 19 anymore, it doesn’t matter what you do or how you live.

I know I am grieving. Grief is the normal process of reacting to a loss. The loss may be physical, such as a death, or social, like divorce or job or health or identity. Emotional reactions of grief can be anger, guilt, anxiety, sadness, and despair. I am experiencing grief for many things, losing my health, my free mind, even my identity.

I am grieving and somehow, I don’t want anybody to know about my grief. There is a shame behind that. I think people expect me to be happy and energetic like before and I feel mad at myself when I realize I can’t. Not physically nor emotionally. I don’t want to disappoint them.

It is all about my expectations. The fact that I can’t function well frustrates me, my bad memory, my poor focus and attention, my low energy level, …. is killing me.

In the past six months I have been fighting with full energy and hope. Now there is nothing to fight for anymore. But I am not who I want to be. I want my old body. It doesn’t matter what I do, it is gone. Now I need to work on acceptance. How depressing is that!

I have been thinking about death deeply for the first time in my life.

I wake up in the middle of the night with a sharp pain in my breast. The doctor told me it is normal because the tissue is healing, but is it really a normal healing pain or is the cancer coming back?

I am anxious, I can’t go back to sleep. My husband is sleeping. I slowly reach for his hand. It is comforting. He notices it. He holds me tight and says I love you, and falls back to sleep again. In the morning he is reading his morning newspaper while eating breakfast. I don’t know if he remembers anything from last night, I don’t know if he knows that he is my healer!  Jila Spring/2018

Jack Daniels

OMG! What did I do to myself?! I feel so stupid for choosing this career!

After almost 10 years of hard work, I’ve finally finished my master of psychology courses successfully. I have now passed the requirements for starting therapy work under supervision.

Everybody is excited and congratulates me, except myself. I really do want to be a therapist and, yes, studying Psychology in a second language has been really hard, but actually practicing in a second language, with real people! What a nightmare!

The first years of school were especially difficult. At least that was about me. Now I have to talk to actual clients! What was I thinking?! I’m making a fool of myself! People need to talk about real issues in their lives! They need help and I can’t even have a casual conversation with them!

My supervisor congratulates me for starting my practice. I burst into tears. These are not tears of joy. I’m really scared.

She’s surprised, “What are you worried about?”

“No one will want to be my client. I am a foreigner! What should I do if I don’t understand them. Or they don’t understand me?”

She smiles, “That may happen. If someone chooses not to work with you, it is okay. If you don’t understand your client, ask them to explain. Just tell them up front: ‘Obviously English is my second language and I am from a different culture, how do you feel about working with me?’ If they choose not to work with you it is fine. There are other people who will be OK.”

I have a good supervisor. Her words make me feel better.

She takes out her notepad, “What kind of client do you prefer to work with?”

I think about it for a moment, “I’d like to work with young women who suffer from depression or anxiety!”

I guess what I mean is I want to work with myself.

I was depressed when I came to the US. Actually, that’s why I decided to be a therapist in the first place. Back in Iran I was a confident, successful, happy person, but when I arrived to the US I felt lost. I didn’t know who I was anymore. I noticed how people treated me differently, with less respect, just because I couldn’t speak English well. I lost my confidence, my identity and even my certainties in life. It was this experience that made me want to be a therapist and to help other people in my situation. And it was that decision that helped me with my recovery.

So now, I’ve started my training. I’m mostly working with young women with depression and anxiety, and I follow my supervisor’s advice! In the first session I talk openly about my limitations and I ask them how they feel about working with a foreigner for whom English is a second language? They appreciate my vulnerability, and my improved confidence, helps me understand them better. I’m honest with them, and this results in a better connection between us. I’m becoming pretty comfortable with who I am and getting lots of positive feedback from them too.

But today, a new kind of client is assigned to me. A very different kind: A 75-year old man, PTSD from the Vietnam war! I feel panicked, but I can’t refuse to see him. It wouldn’t be professional.

A tall, large, handsome man walks in the room. He’s limping. He turns his chair toward the wall. No eye-contact. I’m shaking! My mouth is dry. I hope he doesn’t notice my anxiety. I’m actually grateful that he isn’t looking at me.

He starts to talk with a deep confident voice. That makes me even more anxious. He gives me his basic information. He seems sad. I begin to feel more connected and comfortable with him. I like him.

“Did you injure your leg in the war?”

He raises his eyebrow, “No, Jack Daniels knocked me down last night!”

I scan his file quickly. There were few names in there, but no Jack Daniel. Who is Jack Daniel? I get nervous. I try to follow my supervisor’s advice, but I don’t know what to ask.

I finally decide to tackle the issue head-on, “Tell me more about Jack Daniel.”

He laughs out loud. This is very confusing! OK, that question didn’t help.

“Tell me more about your relationship with Jack Daniel.”

He laughs louder, then he falls silent.

His face turns sad, “It is a love-hate relationship!” He turns to me, “Listen! I know that I have a problem, that’s why I’m here!”

I feel my heart beating. I don’t understand. Why does he assume that I know Jack Daniel?! Is that his partner? Maybe he is gay. Why did Jack Daniel knock him down? Is this a domestic violence case? He seems ashamed. Is that why he doesn’t make eye contact with me? This is the worst time for me to ask who is Jack Daniel!

He keeps talking, and trying to hide his tears. I really want to help him but I’m confused.

The session ends. He says, “I usually don’t talk that much, but I feel safe and comfortable with you. I want to see you, again.”

I have so many questions in my head. I try to calm myself down. I decide to call my supervisor as soon as I get home.

On my way, I stop at a gas-station mini-market. Inside, I notice a whiskey bottle. Jack Daniels! I can’t believe my eyes!

In the months to come, we work through his alcohol dependency, and his PTSD. Later he tells me that he has been in therapy many times before, and he came to see me to work on his PTSD, but his dependency had never been addressed. He’s grateful that I asked him about his relationship with Jack Daniels! And I am grateful for him. Now I have a better understanding of some of my clients’ relationships: with Jim Beam, Johnny Walker and, of course, Jack Daniels.

Jila 2017

 

My Name

DeMaxi? What does it mean? Where is this from? How come you have this last name? That’s some name you have there!

Every year, the first day of school they ask me these questions! I hate it! I hate the first day of school, because I need to explain my last name to the teachers and new students and I hate their reaction, their frustration, their confusion, their shame for not being able to read my name and sometimes their bullying humor!

Nobody has a non-Persian name, except me. I am like an alien. I am outsider. I don’t fit in.

When I complain to my father that I don’t like my last name, that I hate it! Kids make fun of me, Why don’t I have a Persian name like everybody else? He says, “your grandpa was an awkward man! He liked to be unique and different, he chose this last name because nobody had it! nobody can read it or write it! He was a bit crazy!”

My grandfather was a silk merchant, he used to work with French business guys, that’s how he learned this word. DeMaxi means silk threads in old French.

But this story doesn’t help me. I feel like the black sheep of the classroom. I don’t like to say my grandfather was crazy! I wish at least I had a better story for my weird last name.

I finish high school and I get into a good colleague. I am very excited to move out and live by myself, make new friends, study my favorite major, Literature, going to a new school! Oh no! New school! Now I have to explain my name to everyone all over again!

I can’t do this anymore! I have to tell my dad that I want to change my last name! but I am afraid he might get upset. But changing my last name is scary too. I would have a different name for the rest of my life, nobody would know that I am his daughter! How should I tell people that I changed my name? They would know how much I disliked my old name! Oh gosh! Another story! I’d have to explain why I changed my last name! It is so frustrating!

I talk to my dad and I tell him everything I have in my head. He listens to me carefully. He seems sad. I am not sure why. He says, “If you don’t like your name, change it! I don’t like it either, but I didn’t do anything about it and I gave it to you. There is no reason for you to keep it.”

I am very happy and proud of him! I know this is not a usual reaction in my culture for a father. I always knew my father was different.

I change my last name to Behnad. Jila Behnad! Short, easy, sounds nice, meaningful, (it means nice voice) I love it! I love it so much!

Many times people say, what a nice name, and I say, with a big smile, “Yes! I chose it!” and I don’t mind telling my story anymore!

Twenty-five years later. A am married. I am lucky that in our culture women don’t change their name after marriage. I live in the US. My son is going to colleague. We are super excited. He seems sad. He says, mom! I don’t want to go to colleague with this name! I want an ordinary last name, like everybody else! I think by Ordinary he means Western.

I heard this many times during the last few years and it breaks my heart every time. Nobody feels it better than me!

I think of my dad, I wanted to be like him but it is hard! I don’t want my son to have a different last name. My husband doesn’t like it either. I ask my son what do you want to do with your name? He says, I love grandpa’s last name! DeMaxi! It is unique! It is sexy! I love it!

My son is Arash DeMaxi now and I am thinking should I change my name to DeMaxi too or not?

Jila 2007

A letter to my first client

A letter to my first client

Dear B,

Years ago, you came to me with a tremendous fear and I did the same! You were my first client ever! I didn’t know how to sit, I didn’t know what to say, I didn’t know what to do. Even in those days I could not speak English much.

You were so anxious, I was anxious too. You didn’t have much eye contact with me for weeks. You just looked at the wall, cried and …cried and cried.

You told me about your suicidal thoughts, and I told you how much I care about you. I even told you that I don’t know how to tell you that I like you so much! 🙂

I prayed for you every night! Even though I’m not religious, I knew that I need some extraordinary power! I knew what I learned in college was not enough.

I looked at your eyes every week and I told you, you are so lovable, you are worthy and you are enough, while I was telling myself the same thing. We talked, cried together, laugh together, and we were healing in silent, very slowly.

We both observed our remarkable changes. Safety came from the door and fear left to the window. One day you told me that you don’t deserve to be punished by your thoughts and feelings. You deserve a happy life and my answer to you was just my tears, happy tears.

Every week you came with new news! You went to the college, you got a job, you started to eat healthier …. no more hopeless talks …. to me it was a miracle. I didn’t know what happened or how it happened but I just felt phenomenal happiness.

We worked together for eighteen months and you flew from your nest, and I sent my prayers and thoughts after you. Yes, you were ready to fly by yourself.

With every success in my therapy sessions I felt that I won a lottery. I had a dream many times that I was driving fast and I am very surprised. I tell myself I don’t know how to drive, what’s going on?! Yes, that was my feeling in those therapy sessions.

Dear B, today after many years, I am still the same person, with all my limitations and insecurities, BUT with a big difference. Now I know the winning number in the lottery. I know what was that extraordinary power and I know what happened between me and you.

Change happened because we both accept each other’s’ vulnerabilities. I accepted who you are with all your limitations and you accepted my imperfections. I saw your fear and I told you I am here for you and you saw me and you told me you are enough.

If you ask me, “What is the key?” I will tell you “the courage to be vulnerable, to show up and be seen.”

I grow with my clients. When I see their fear, their sadness, and their pain, I believe we can get over of it, as long if we accept each other the way we are!

  • The ordinary Jila

Who Am I?

Who Am I?

Who am I?

I am a human

I am a woman

I am a wife

I am a mother…

I am a woman from far away

A woman, who knows the mountain and the grove, Soil and sun

Her chapel is a walnut tree

She prays with birds and worships the Eucalyptus tree

The woman who practices to walk in stony rivers

The woman who runs away from harshness

The woman who hates war

The woman who is looking for peace

The woman, who loves human, loves life

The woman who knows baby’s language, who reads children’s eyes

The woman who loves gardening, cooking and making crafts

The woman who loves beauty

What can I say about myself? I don’t see anything more

I don’t know my race; let me look it up in a book

What is my ethnic? I don’t know

Where I came from? Far away

What is my religion? Nature

What is my language? My mother tongue

What is my color skin? I never thought about it. I have to look at the mirror again

How old am I? I have to count. I don’t care about my age,

I can talk about my feelings, I can talk about your feelings,

but I don’t know about these questions. Let’s go inside and enjoy being together.

– Jila Behnad 2007