Don’t Feed the Bears & Don’t Make the Bald Woman Uncomfortable

I’d like to share a bit of advice with you all tonight…

Please don’t feed the bears and please don’t make the badly scarred and bald woman feel (more) uncomfortable (than she is).

I just must attract people, odd people. That’s all there is to it. I’ve had two uncomfortable experiences over the past two weeks and I was polite to both people when I really didn’t want to be.

Last Thursday at the home, dad’s social worker asked me where I got the tattoo. I don’t have a tattoo but I knew what he was talking about because he’d just walked up from behind me so I knew he meant my scar. I had surgery in December 2011 to take my Trapezius muscle from my back and turn it upside to put on my head to cover a hole the radiation wore in the new skin on my head. It left a pretty gnarly scar that makes me feel deformed and maimed. So I’m less than receptive to conversations about my scar from strangers who walk up and glibly ask me stupid shit like, “Where’d you get the tattoo?” He had a pronounced limp, I didn’t walk up to him at any point during dad’s stay and say, “Dude! Where’d you get that limp?”

Then today we were eating lunch at the diner after my doctor appointment and an older woman walked up to me and asked me if I was in chemo. I told her no and went back to eating because I sort of wanted the conversation to end there but she went on to tell me about this local hairdresser, Martino who gives away wigs. I politely told her I knew about him and again hoped she’d go on her merry way but she continued talking, telling me she’d had breast cancer and lung cancer and that she’s a two time survivor. I offered niceties and went back to eating and still she continued on asking me about my cancer, wrongly assuming that I have breast cancer because of my pink scarf. I told her a brief version of my story and said I was two years cancer-free (and I just know she was dying to ask me how I’m still bald if I’m two years cancer-free) before she finally left our table but not before grabbing my shoulder and saying, “God bless you.” The “God bless you” was what sent the whole thing over the edge, I don’t want to feel pitied and she was the second person to do it in two weeks. The social worker said to me as he was walking away, “Wow, you do good for being here all day [after having had brain surgery.]” ß the part in brackets was implied by the look in his eyes.

Now I know the social worker didn’t mean any harm and I know the woman today just wanted to let me know where to get a free wig but I don’t want to be a circus animal (I don’t like to be on display on my very best days) and I don’t want to be the cancer patient poster child. Sometimes I want to sit down and eat lunch with my husband and not be reminded that I’m bald or of what I’ve survived and sometimes I want to stand on the porch with my father and not be reminded that I’m hideously scarred.

It’s hard to feel normal or have a sense of normalcy when you wake up every morning bald and badly scarred so please don’t walk up out of the clear blue sky and ask someone about their scars or their bald head. Those are conversations to be had in the right setting when the mood/energy is right. My reality is there every time I look in the mirror so please don’t feel it’s okay to bring it up just because you want to know or feel like talking.

PLEASE NOTE:  Close friends and family this does not include you. If you want to sit down and ask me about how it feels to be bald and scarred and you’re not afraid of a few tears I’m an open book as anyone who has ever read my blog knows.

Straight Out of the Camera Sunday

I shot this photo the night before the full harvest super moon on September 7. I like the way it captures the clouds and motion, I am working on learning how to use back button focusing. I think it worked out well in this particular shot.

Uncropped Image

"almost full moon September 7, 2014" "almost full moon"

(click to see full size image)

Cropped image

"almost full moon, September 7, 2014" "almost full moon"

(click to see full size image)

You can see more straight out of the camera images at Straight Out of the Camera Sunday.

What I’ve Learned (a work very much in progress)

The last four years have been enlightening, horrible, amazing, terrifying, and full of more grace, kindness, and love than I could have ever imagined. I woke up in the ICU with a cancer diagnosis, spent 17 days in the hospital, had 32 radiation treatments, had five more surgeries, my mother got sick, my father got sick, my father got sicker, and one of my best friends died. We said goodbye to Jenn on Thursday night, which has left me feeling contemplative on this early Sunday morning.

Over the past four years there’s been a lot of change, a lot of fear, a lot of anxiety, and a lot of support along the way. I spent some time over the last few days thinking about the person I want to be and the person I don’t want to be. As I blessedly and steadily more toward my 42nd birthday I like to think I’ve learned a few things along the way.

The following list is a work in progress; good sense and wisdom come with time and experience.

Things I’ve Learned (a work in progress)

1. With love we are healed.

2. Love freely even if it means getting hurt in the process.

3. Forgive; grudges only destroy you. The person you’re hating on has long since forgotten about you and whatever you’re stewing about. And, what’s more they don’t care.

4. Put yourself out there, no one is going to invite you to x, y, or z if you’re hiding in the corner thinking you’re not good enough to join the group.

5. I don’t control the universe. (Well, we’ll put this one in the “still learning” column.)

6. Bloodlines don’t make families; love and connection make families.

7.  Friends are incredibly important.

8. People’s opinions of me are none of my business and I need to stop worrying about what other people think of me. (We can put this in the “still learning” column also.)

9. You can’t change people. Either love them as they are or don’t but don’t try to change them. You’ll beat your head against the wall and lose your mind but you won’t change them.

10. …

Grieving: Am I Doing it Wrong?

I wasn’t prepared for this. I spent all year fearing my father would die. But I did not see this coming. Even though I knew Jenn wasn’t feeling well, even through I knew Jenn was in a lot of pain with a multitude of health problems I never thought Jenn would die. I still thought Jenn would get better and we’d go back to meeting for pizza.

Even when Jenn’s husband called me and I heard his voice on the other end of the phone I still believed he would tell me that Jenn had finally gone to the ER that they’d kept her. I heard him say the words, “Jenn died” and in the time it took to say those two words my world changed. I hung up the phone and went to pieces.

We spoke on an almost daily basis. Jenn was my breaking news friend; fires, floods, mass shootings, big storms, you name it; if it was breaking news she called. We’d discuss the incident and witness it together. The bad stuff doesn’t seem as bad or as frightening when you’ve got a familiar and friendly voice on the other end of the phone.

I still can’t believe I’m never going to hear Jenn’s voice again. I can’t believe she’s gone. We went to Jenn’s farewell ceremony last night and I couldn’t bring myself to touch the urn as we made our final pass and said our final goodbye. I can’t tell you why, but I just couldn’t.

I don’t know to feel. I had a big cry when I got off the phone with Jenn’s husband and I’ve had moments when I’ve filled up, but I’m oddly calm. That afternoon I called a friend to inform her that Jenn had died and we cried together and then that night I still had to go get dinner and then grocery shop. I called another friend to let her knew that Jenn had passed. I spoke to another friend the next morning and I did not cry along with her. I don’t know why.

I filled up in the car on the way home last night thinking how I’ll never hear Jenn’s voice again but I haven’t had that one big breakdown save for when I first found out. I always tell people that no one should tell them how to grieve and that they have to grieve in their own way and in their own time and yet I find myself thinking, “You’re doing it wrong. Why aren’t you more upset? Why aren’t you falling apart? What’s wrong with you?”

I’m sad and I definitely suffered from horrible anxiety all day yesterday desperately not wanting to go to Jenn’s farewell service wondering if I could live with myself if I did not at least make an appearance. I’m glad I did go. I didn’t sleep for the first four days after I learned Jenn died. I finally came home and took something to help me sleep and I got the first solid four hours of sleep I’ve had since Sunday.

So here I am, awake in the early morning and feeling more rested than I’ve been in the last five days, wondering, “Where do I go from here?” Jenn’s gone, our goodbyes have been said, and now all that is left is life without Jenn. I don’t know how to feel. I don’t know how to act. I’m grateful that she’s no longer in pain, I’m grateful she’s no longer suffering, but I hate that she’s no longer part of my daily life. Who’s going to call me when there’s breaking news? Why am I not more upset? I don’t understand. What’s wrong with me? My heart is broken. Is the epic meltdown to come? Could it be that some people never have epic meltdowns?

I’ve fiercely told anyone I’ve ever known who was grieving that there is no one way to grieve and that they shouldn’t allow anyone to place a timeline on their grieving or tell them how to grieve, but yet I can’t help thinking that I am doing it wrong. Is there a wrong way to grieve? Where do I go from here?