In the cold, dark, fear of 3 a.m., when the cancer patient is most alone, I found ToddlerPlanet, a blog written by cancer fighting princess warrior, awesome mommy, and astrophysicist, Susan Niebur (also known as @whymommy).
Days after my diagnosis, before I learned to reign in my imagination and to view Dr.Google for what it is, I found Susan’s blog. I read for hours: post after post, page after page. It seemed she was speaking directly to me, addressing my personal concerns about life, death, love, cancer, and most important to me at that moment, the well being of my child. No sensationalism, just an honest look at life and parenting as impacted by cancer.
It would be difficult and frustrating, and at times, extremely painful, she seemed to say, but my days would still be full of love and joy, and I can still be an awesome mom, and my child can still be happy. I read those pages through tears; I was so relieved and hopeful. In the two years since then, we formed an internet friendship, tweeting and commenting on each other’s blog posts. The internet has made possible friendships between people who have never met.
Who will never meet.
Today I read her blog again through tears. Susan passed away today. She touched so many lives, her husband and little boys, her friends and family, the science community, the blogging community, the cancer and health advocacy community… and me, a girl at a computer Seattle, whose life was blessed by knowing her, even though we never met.
Is it just me, or does the moon seem to be a bit bigger and brighter tonight? I’m going to think of it as Susan’s moon.
Thank you, Susan, for the love and hope and strength you shared with all of us. Godspeed.
I like to joke that no one really knows what I look like without a camera in front of my face. I’m THAT girl at parties: the one who hides behind the camera, capturing moments more than participating. The one who rarely actually appears in photographs…
Put Mom in the Picture
When I was first diagnosed with cancer, this really bothered me. For the first time ever, it was REALLY important to me that I have photos of myself, and photos of myself with my husband and daughter.
I wanted my family to have them – not just in case I died, but also to mark who I am right now, because I’m evolving. My looks are changing daily as my hair grows back. My outlook is changing daily as well; each new day brings a new challenge, and something else at which to marvel.
I’m trying to teach myself photography, and in that process, I spend a lot of time studying the work of some of my favorite photographers. Each has their own unique and identifiable style. What I’m learning is that a picture doesn’t just tell you about the subject matter in the frame, it tells you a whole lot about the photographer. You can see moods, attitude, approach… you can see respect, affection, and love.
The photograph is a record of the world as I see it
That realization eased my mind a bit about my absence from the photographs. I understand now, that I am in all those photographs that I have taken.
The photograph is a record of the world as I see it. It’s an opportunity to look at life through my eyes, to see what I see.
My hope is that someday in the future – when my daughter is 13/16/18/whatever, and mad at me because I wouldn’t let her stay up late/take the car/have my credit card/whatever – that she will, every once in a while, glance at one of the millions of photos I’ve taken of her, and see that the person behind the camera loves her with everything she has to give.
I can see my attitudes in the photos I’ve taken. I can see the difference between the photos taken to simply to document a place, thing, or an occasion, and those that seek out the magic of the moment. Mood, attitude, and approach do make a difference.
The camera bag of my dreams
Long before I had a real DSLR camera, I had my eye on a camera bag. Not just any camera bag, a beautiful camera bag from Epiphanie Bags.
After I was finally able to get my good camera this summer (with some help from my mom – THANKS MOM!), I bookmarked my dream bag, and revisited regularly. But purchasing the bag was out of the question. The price was prohibitive.
Not to long ago, I even posted the link on Facebook with the words, “sigh… someday.”
A couple weeks later that bag appeared at my door.
But here’s the thing: I didn’t order it.
I don’t know who sent it to me. It was delivered by the UPS guy with no note attached.
I laughed, I cried, I jumped up and down and squealed, even scaring my baby a bit till I convinced her it was a happy dance. I am completely in awe of this bag, and the kind, anonymous, generosity that caused it to become mine.
A Sense of Gratitude and Magic
I tear up every time I look at the bag, I also stand a little taller with that beautiful braided strap over my shoulder. That kindness now travels with me everywhere. Each time I reach for my camera, I am reminded of this generosity, and as I look through my lens at the world, I do so with a sense of gratitude and magic, and I hope that will show in my photographs.
Thank you my friend, whoever you are. You have given me so much more than a gorgeous bag to cradle my camera. Bless you.
Where have you discovered community, online or otherwise, in 2010? What community would you like to join, create or more deeply connect with in 2011? (Reverb 10 – Day 7 / Prompt Author: caligater)
I started 2010 with my thoughts on community.
I enjoy my friends individually, but I missed belonging to a circle of friends. It’s been a long time since I had local friends who were friends with each other. It’s even more complicated now that some have kids, and some don’t. Schedules don’t sync up, we go weeks without seeing each other, and I end up craving grownup conversation. I was looking for a community to join at the beginning of the year. Specifically, I was looking for a writers’ group.
Cancer made a difference.
I was having grownup conversations with my doctors that no one should have to have. But cancer also led me to a circle of women, all breast cancer survivors, who would become my friends. At least twice a month I connect with other women, many with babies and young children, who understand what I’m going through. This community is not only helping me through this difficult diagnosis, it is addressing issues that existed before I knew I had cancer.
As I look ahead to 2011
I plan to find more communities. I am going to renew my search for a good writers’ group; I need the writing practice, and I thoroughly enjoyed my previous experience belonging to a writers’ group.
But there is something else that has been weighing on my heart since my diagnosis. Cancer support groups tend to be divided up by diagnosis, and they tend to be exclusive. Every day I count myself fortunate that my cancer cells first attacked my breast. Breast cancer is a popular cause, and while there is still so much need, most support groups and services are exclusively dedicated to breast cancer survivors.
Sure, most women with cancer happen to have breast cancer, but that is no comfort for the 29-year-old single mom in a support group full of 60-year-old men because she has rectal cancer. Would you want to discuss your chemo induced menopause in that environment? She’s receiving many of the same chemo drugs, and the radiation differs just in location. That young woman has no access to the Komen funds that help pay the rent of breast cancer survivors, or the house keeping services for breast cancer survivors, or the circle of young moms battling breast cancer. Fundraisers for ‘Save the Ta-Tas,’ T.I.T.S. (Two in the Shirt), and any number of other tongue in cheek parties that combine boobs with booze fill our social calendars, but nobody wants to go to a save the rectums party. Just because the cancer cells first attacked her caboose instead of her headlights, this young woman is excluded from an amazing array of cancer coping resources. And she is not alone. Millions are in the same predicament.
So let’s bring those millions together.
Or, as far as the Seattle area is concerned, lets bring those hundreds together.
I want to create a community for young adults with cancer, especially mothers of young children, that is inclusive rather than exclusive.
And then I want to find a way to help get them the kind of amazing support, financial and otherwise, that I have received as a breast cancer survivor.
My 20 Year High School reunion is taking place in Palmer, Alaska this weekend, but I won’t be there. I was planning to go, in fact I was looking forward to this reunion. I wanted to show off my daughter, and introduce my husband to the people who were such an important part of my past.
It didn’t work out. Why doesn’t matter, although money was no small part of the consideration.
I find it interesting how my feelings in anticipation of this event changed over the past few years. Several years ago, when looking forward to the reunion it was all about comparison. I was anxious about seeing my classmates. I was lucky in love, but the tides had turned financially and I was no longer bringing in the big bucks. How would I stack up against my classmates and their achievements? I didn’t have a beautiful house, or a cabin on the lake, or money – or time – for vacations. How would I fare in the competition of “Who’s got the best life?”
Then MySpace happened, which was quickly followed by the even better Facebook. My classmates joined up one after another, hunting down other classmates and cajoling them to sign on as well. A circle of friends grew. We were interacting with each other in a way we never had before. Looks didn’t matter. Those extra 40 pounds were irrelevant. As we shared baby pictures and survey results, built farms together and challenged each other to scrabble games and mafia wars, friendships reconnected and new ones grew irrespective of the cliques that existed during our high school days.
At our ten year reunion we showed up, showed off, exchanged email addresses, and promptly got back to our lives once the reunion was over. Few of us stayed in touch. Don’t get me wrong, I had a great time and I’m glad I went. But I suspect this reunion will be different.
This time we reconnected before the reunion. Over the past couple of years we’ve shared each other’s trials and triumphs. We’ve cared about each other in specific ways: hoping a job interview goes well, a healthy baby (or grandbaby), a big cross country move, and a cancer diagnosis. We stopped being a generalized and generic collective and, by interacting with each other through Facebook, became a collection of individuals. Competition matters less (unless you’re playing Scrabble against Liz), those 40 extra pounds matter less, the paycheck matters less, the living arrangements matter less.
What really matters is who you are when you sit down and start typing. Are you real? Do you give a shit? And, remember when…
So I’ll be thinking of you this weekend Palmer High School Class of ’89. And when you get back home, I’ll still be on Facebook, awaiting your updates, and photos, and maybe a cherry tree for my farm.
Cheers!
On a side note: What do you do with a 20+ year old woolen letter jacket? I know the streets are crowded with people who will desperately need a coat this winter, but this coat is so tied up in my identity (not to mention that my name is embroidered all over it), it doesn’t feel right to hand it over to just anyone. It still fits. Maybe I’ll wear it this winter and see if it makes me feel younger.
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