Tuesday, 23 December 2008

What's In A Face


















Besides your eyes, nose and mouth, what’s in a face? Usually besides your weight, it is one of the first things that you are judged on. People look at our faces and they see us and we see them. They become real and we become real. We connect. What do you think happens when they stop looking? Are we no longer here?

In other words, if you have a face in a forest but no one connects to that face, does that face exist.

Well if you have cancer, others’ reactions to you may make you feel unsure if you exist or if you do exist, why you are out of your house putting a damper on other peoples groove.

I have been thinking of my sweet friend Jill so much in the last few weeks and remembering the time that Nadalene drove us to see a movie and how we were pointed at because of our appearance.

I want to tell you what it feels like to be gawked at. How it makes you feel and how eventually you start gawking at yourself. Here are my feelings and a few little stories to help you understand.

When Kirsten first shaved my head, and I was on chemo every Friday I not only looked greenish but I also looked like my brother Gerry. I basically had a quarter of an inch of hair. I looked foreign and I also looked androgynous (I’m surprised to see that I’m tearing up). I knew it was going to happen but I was in awe of how sick I suddenly looked. It doesn’t look like me and it doesn’t feel like me. This is what a person with cancer looks like. There is no denying it now. I introduce my children (who are pretending it looks great) to their new father.

Jill had not been feeling well from radiation and I was not feeling well because I had chemo the day before (normally I would never go because I felt like shit – I can’t even say the name of the movie because it reminds me of how sick I felt and makes me want to throw-up) but Jill wanted to go see it and I didn’t want to say no, because I knew we might not have another chance.

Nadalene dropped us off at the front door and I’m telling you it took us probably 20 minutes to get to the ticket counter, we were so pooped out and Jill was having a hard time breathing.

But what I’m really trying to get to here is how everyone stared at us. Neither of us had any hair to speak of and we walked like we just got out of a concentration camp. I understand too well the term ‘walking dead.’ There were two young girls (maybe 10) that couldn’t take their eyes off us. That I could understand.

Somedays I remind the woman in the mirror that the pursuit of happiness lays within. Who I am is determined by me, not somebody else (or in many cases with contact in the outside world many somebody else’s). I know that the physical is just that: physical. But it is my physical.

Yet up pops my ego (also known as my inner critic) with her self-centered narrative always finding flaws and never seeing the beauty in the image in the mirror. Always jumping on the negative and never getting near the positive.

I am unable to wear a bra because of the metastasis to the skin and my right breast is about six inches higher than my left and is also much firmer because of the radiation. I have burn marks on my upper collarbone from the radiation as well. My left arm is half the size of the right. My left arm also has my PICC line in it so it looks very robotic.

When Josephine was born I decided to wear the wig so that no one could see my life by my hair. I wanted it to be about Angelique and Don and the baby and not any doctors thinking oh ‘the mother has cancer.’

I felt so phony and I had to hold my sweet girl with that thing on my head. Her first sight of her grandma was not real. My ego was beside me taking away my feelings of pleasure by telling me that I looked ridiculous and phony. I kept the charade of the wig all the time Angelique and Josephine were in the hospital.

I knew for sure that my shaved head would elicit a few stares. But mostly people avoided looking at me. It is like I became invisible overnight. I look so different from my former self that people I know do not even recognize me. I went from someone with no wrinkles to someone with lots of wrinkles.

People avert their eyes when I walk by. Is it because they know that I am sick and they don’t want to take a chance at looking in case the evil eye gets them and they too end up with cancer. Or is it because they know I’m sick and they don’t want to stare? Have I become so hideous that people don’t want to look at me anymore?

I’m beginning to feel that no one can see me but children. Adults pretend they can’t see me or they avert their eyes, while small kids eyes widen in horror.

When I was having chemo at the hospital I was looking at some pictures of me, my mother, Angelique and Josephine. A couple of ladies who were also getting chemo asked to look at the pictures. They then asked me if my mother was my sister.

Another time I went to the doctor’s office with my sister Shelly (five years younger) and the doctor asked me if she was my daughter.

Kermit the frog says it is not easy being green and I have to agree with him. It is also not easy to be exposed to possible ridicule, to naked viewing, to seeing and feeling things that I’d rather avoid, to not seeing myself as other people see me. I have become visually unpleasant to people. They wish I would stay in my home.

I forced myself to wear my wig to Nadalene’s wedding because I did not want her wedding pictures to have me in it with a bald head and to have her looking at her pictures and being reminded of my cancer. After all for 29 years of her life I did have hair.

I wore the wig and although it was okay, it also wasn’t. On the other hand when I look at pictures I am glad I wore it.

Everyday we get stuff wrong. We forget the dignity and respect that others deserve. We communicate badly and worse than that we ignore (instead of respectfully lay aside) other people’s concerns.

The funny thing that you would never gather from this post is that I didn’t ever care that I lost my hair. It didn’t and still doesn’t matter to me. All of the physical appearance stuff really doesn’t matter in a generic sense. I tend to shuffle instead of walk. I am hunched and totally baby my shoulders so that they don’t hurt.

But with the help of people’s reactions to me I look less rosy. My eyes don’t light up the way they used to. I still smile. I still try.

In Moose Jaw, Jacquie, Nadalene and I were at a mineral spa for three days and not once did anyone initiate a conversation with me. They talked to Nadalene or Jacquie and looked straight over my head, unless of course I turned fast and then they were looking at my PICC with the plastic sleeve over it. As a matter of fact, one day about ten people were laughing and talking and then I came out with Jacquie and as they all tried to pretend I was not there, the silence became deafening.

I want you to know that if you are going through chemo for cancer or are taking medications for other serious illnesses and you don’t look like you use too, that you don’t frighten all people. There are always the people who love you and there are always people who care.

When I first met Jill she was sitting cross-legged in a chair in a group meeting room. My first impression was ‘Wow is she ever beautiful.’ Jill had curly hair and the friendliest smile and the best personality. When I last saw Jill in a hospital room my impression of her was ‘Wow is she ever beautiful.’ Jill had no hair and the friendliest smile and the best personality.

Even when you feel really alone there is always someone out there wishing hard for you. Wishing they were able to share your pain with you. Maybe there is even somebody watching you and thinking how beautiful you are, but you just can’t see them or maybe you turned away just at the wrong moment.

20 comments:

Anonymous said...

I have had the same thought about you that you had of Jill. Whether it was at your Dad's funeral or in a car on Elizabeth (you didn't see me waving) or in some of Ang's pictures all I saw was a strong beautiful woman. Your posts only solidify the fact that what I see is true beauty. Cindy

Julie-ann said...

Oh Renee, thank you so much, I feel so honoured.
I like the fact you see the funny side of life in my stories. Mum, laughs at it now.
There isn't enough awareness. Most ill or handicap people don't come out very often here. The buses are set ready for them. They also have their own bus, which helps them. Schools are not equiped enough, so don't see different cases there. The world is set on hiding. So children are surprised and adults should know better and talk, say hello and ask how things are going. I must admit the first time I saw my first husbands mum I was frightened to talk to her. She had parkinsons and look so frail. I thought if I spoke to her, she would burst out crying. I got to know her and she was a very bright lady. I think by knowing her taught and helped me to see people real. You are an important person, one that has gone through the places and shocked children and put fear in adults. We need that lesson. All of us need to know that there a real people out there with cancer and are ill. You go girl, be proud for your stand. All though shocked or denial faces are learning.
Sometimes my mum and I go shopping in Town, if we talk to someone they look at us, like we have 2 heads or got stupid written on. They don't talk back. So we just think, Ok, one of those times again. We are so open, talk to anyone, some people just don't want it and try and run, help nutter talking to me!

Julie said...

Sigh, this is beautiful. I will make more of an effort to let cancer fighters and survivors know that I see them and admire them.

Anonymous said...

Love this one Renee! Mom used to always say how much people stared, but she didn't mind when kids did it.

Hope you're feeling okay today...I have a treat for you whenever you're ready.

Love,
Car

Taylor said...

deep; meaningful; full of perspective. Appreciated the full circle ending.
As I have always thought:
You're beautiful inside and out.

love you to the moon and back.
Taylor
xoxo

Renee said...

Cindy: thanks for saying that. Have a very Merry Christmas xoxoxo

Love Mrs. Khan

Noreen said...

Thank you for sharing the reality of living with "elephant" in the room that one sees when it comes to the destruction that cancer brings physically and how emotionally people's actions can hurt. My family (with the exception of my sister in Toronto), which includes my mom, have made no attempt to talk or see me in the three and a half years that I have been living with cancer. This is their way of coping with what they do not understand. "If I don't talk about it, it does not exist". Their loss. Their shit to deal with, not mine.

I have refused to wear a wig to make other people comfortable. What you see is not a reflection of who I am, rather shit happens. Yes, even to good people!

I have been, however, so fortunate to be surrounded by a lot of wonderful people . They want nothing for me other than to have my cancer in remission and, at times, the behaviour reflects it. My sister, my sons, my close friends and my dear boyfriend are not judgmental with regards to my less than perfect body and supportive when I am experiencing a "emotional short" in my wiring. For me, this more than makes up for the lack of understanding of strangers that comes across as cruel behaviour.

Thanks, again for sharing the reality of how others react to what they "see".

Love, Noreen

one little acorn said...

Renee - you are so incredible and so honest.

I often found it hard when visiting my brother in hospital, not because I was worried about how other patients looked... and didn't want to stare, but I didn't want to intrude on their privacy. Unfortunately, there is no avoiding it... there is so little privacy in hospital!

What I also wanted to say was even on days when Jez was sick and as he lost so much weight and grew weak, all I saw was him. His smile and his love. That beauty was always there.

... I have noticed you have JUST left a comment on my blog as I have been writing. Nice to think we are thinking of one another at the same time.

Love and best wishes to you. xxx

Renee said...

Jacinta -- I am really glad that you always saw the love because I believe that is the one thing that does not go away.

Love Renee xoxoxo

Anonymous said...

Hello, beautiful woman. What an amazing reflection. It touches me deeply remembering beautiful Kathy with or without hair.
Love you and wish you a beautiful Christmas.
Barb
xxooo

glorv1 said...

Renee I stopped by to wish you and your a Merry Christmas and a very Happy New Year. I read your post and only you could write such beauty. You are a great woman with wonderul skills, stay strong my friend.

::hugs::

CarolineH said...

My dear, sweet Renee,
I'm positive that you knew I wouldn't let this post slip by without a thought of my own.

I thank God every day that I'm healthy, but still I can sort of understand...
When I was in St. Louis, visiting Joseph, we had a lot of stares. He went from a very young 48 years to a very aged man from the chemo and the cancer. Add to that the fact that he was deaf, and bald from treatments, and wore a cochlear implant stuck to his skull behind his right ear, and some people just didn't know WHAT to think.

I never ever once thought he was less than beautiful though..those wonderful blue eyes, that gorgeous mischevious smile, his infectious laugh. :) Good memories.

You have posted a picture of a very beautiful woman in my photo guest book..with beautiful smiling eyes, a gorgeous smile, and I'm willing to bet an infectious laugh as well. How i wish one day we could sing together to hear you singing in my ear while we dance around like two silly women! YOU ARE BEAUTIFUL, yes, inside and out. I see a strong, articulate, gorgeous lady that has something to say, and says it.
Thank you once again, for the glimpse into your heart and life. I think knowing you, is such an honor, and makes me so much better a person. I learn from your posts, how to be more compassionate. I love you, Renee, from the very bottom of my heart.
Caroline

Yaya said...

Profound.

Thank you for this eye opener.

Some think ignorance is bliss, but I think knowledge is power. Thank you for helping me gain some knowledge.

angelique said...

You have always been and will forever be, absolutely beautiful. Even in those moments you don't think you are.

I felt like crying when I read what Cindy wrote because it is so true.
Love you.

Renee said...

Wow Caroline what can I say to that. Thank you will have to do.

I could dance with you and you can sing in my ear, but believe me, you do not want me singing in yours.

I laughed when you talked about the hearing aid as I have one too. I am suppossed to have two but could only afford one ($3,000) an ear.

Merry Christmas sweet Caroline and I hope that Dad and Joseph are looking down upon us.

God Bless Us Everyone.

Love you. Renee

Zom said...

Hi Renee, thank you for visiting my blog, and thank you for this post.
I am reminded of what my mother went through, and what many of us will go through. I don't have anything else to say except that your writing was a gift and I thank you.

Anna Lefler said...

I'm so glad you know that there are people out there wishing wonderful things for you...because it's true.

I always learn so much from your posts, Renee. You have a real gift.

Have a lovely Christmas and talk soon...

XO

Anna

Jeannine said...

Renee when I look at you, the first thing I always see are your beautiful eyes. I think the eyes are the window to ones soul and yours certainly are. When I look into your eyes I see beauty, wisdom and a loving caring person. To me the body is a mere shell and it really doesn't matter what it looks like. I love your soul and who you are as a person. You also just happen to be a gorgeous woman with or without hair.
Love You Always XOXOXO

Anonymous said...

Pudding

This blog was hard to read - it hurts to hear, see and feel your pain.

I do have to say that your eyes never stopped to sparkle whether Josephine walks in the room, we make a joke about Sheldon an Christmas balls, or you found a bag of onion and garlic chips!

You have always been the first to say that looks don't matter and I should remind you that you complained about your real hair at Ang's wedding, went braless way before you had breast cancer and always silenced a crowd with the jaw dropping bathing suit and blue crocs combo - way more powerful than a pick line!

Remember I was there!

love nadia

Angela Recada said...

Dear Renee, I'm lurking in your past (I hope you don't mind!), reading the beautiful posts you wrote last year, before I knew of you or your blog. December 23 is my daughter's birthday, and this post has especially touched me.

This post reminds me of my mother, when she was undergoing treatments both times she had breast cancer. Not IBC, but cancer, still. She will forever have a huge, swollen arm from the lymph edema which resulted from the radiation. People still, after all these years, stop and stare at her arm and ask, "What happened to you?" She has started lying rather than repeating the same story over, and over and over. She is beautiful!

Your story reminds me of my sister-in-law who found she had stage 4 cervical cancer at the age of 37. She wore her last remaining wispy clump of hair proudly, and befriended a frightened little girl with cancer as they underwent treatments together. She was beautiful!

You make me want to be a better person, Renee. You make me want to give, and give and give. And you make me want to always see beyond the exterior. To see the truth at the core of all of us.

Please know you don't have to respond to this. I know you are there - but I also know you probably tire easily. I hope you and your family have a wonderful time celebrating your son's birthday tomorrow!

Thank you so much for all your kind words to me since we met in cyberspace. They mean so much to me. You are a gift to those who are lucky enough to know you. YOU ARE BEAUTIFUL!