Connections -- She's here...she's here...she's here

This week, my niece screamed into the world. Two perfect hands, two perfect feet, two perfect eyes. My brother and sister in law worked hard to bring her here, but she seems mostly unimpressed and content to sleep and eat and sleep eat. 

We flew home, and I have spent some time holding her, counting her toes, watching her chest rise and fall, and smiling at odd moments thinking about her. Thursday, we gathered at some of my best friends' home. A large extended urban family bound by blood and choice and waited. My two young god daughters so excited to welcome Ducky into the clan. 

In between laughs, stories, sips of liquids, adult and otherwise, I hung with my two girls. The oldest, Rose, snuggled next to me, I reveled in the connection of love built pat by pat, song by song, diaper by diaper, when I cared for a "Ducky-sized" baby Roselet. Her sister, I know less well, a year is an eternity of time when you're almost 6, but I love just as much.  

In a quiet moment, when her sister was off busy, Sunshine, asked me, "Do you love me, as much as you love Rose?" I said, "Yes, I love you both with all my heart." A breath, two. "Do you love me and Rose as much as you love Ducky?" "Yes, with all my heart."

It's a crazy thing, but when Rose was born, I didn't know I would love her with all my heart. I didn't know I needed her. She came into my life, just when I needed unconditional baby love and trust the most. Rose settled into my heart and made room for herself. When Sunshine came along, she settled in too. Before Ducky was even here, I could feel my heart expanding in my chest. That hollow feeling of first love  settled  next to the place that is just for Sunshine and Rose.  

Babies know only to trust and love.  Because this is all they know, with most people, they get love and trust back.  They have limited skills, but all the capacity in the world to become anything. I hope that these girls become something: astronauts, presidents, chemists, CEOs, whatever they want to become. First and foremost though, I hope they always stay agents of love.  

Perspective

When dealing with problems outside of one's control, people often recommend to take perspective. Think about the starving child in a third world country; think about the mother who just lost a child to a mortar attack; think about the father who can't put food on the table. Think about all the ways that you are blessed and be at peace. There are people in this world struggling with obstacles and trauma that you cannot imagine. You are not one of them, and so get over yourself; move on.

I've tried this. When the pain is raw and throbbing in my chest over something like "I can't have children," "I'm persona non grata to the adoption industry," et cetra, I remind myself that these issues are not as significant as others are facing today, but part of me always hesitates. I feel like I'm saying, "At least, I'm not that guy," which makes me feel worse.

I am blessed. I have a home. I have food in my fridge. I have money in the bank. I have a job. I have a college education. I have a loving partner and supportive family and friends. I have health insurance. All of these things are true, but I am still sore. What right do I have to be in pain, when there are those in the world suffering more greatly than I?

"A nation's greatness is measured by how it treats its weakest members." 

~ Mahatma Ghandi

We are at a point in history where we must not think of nations. Our world is too small. All of those people I listed above, they are my family. When I think on their experiences, it stabs me in my gut. It is not pity, but a deep, dividing wound that settles in my soul past where cancer ever struck. In this week of bombings in Iraq and Lebanon, shelling of chemicals in Syria, protesting in Egypt, the world spun on, and if I think about all of us, a larger grief settles around me...a grief for all my brothers and sisters.

I think I focus on my problems, because I can. If I open myself up to the world's pain, I am not a big enough vessel to carry it. If everyone's my brother and sister, then all their pain is my pain.

Earth from Mars. Credit: Nasa.

It's like I'm trying to think about the universe, the vastness of space, the millions of galaxies spinning around in all directions, and my brain is too small to hold it all in. So I look at my garden and I appreciate its beauty and its savagery. I can see that and know it. 

My grief is the same way. If I think about the world too long, my heart becomes full of sorrow, and I cannot hold it all, but I can't afford to become paralyzed by it.

I can know it is there and choose to act. I can't solve the world's problems, but I can do something.  If I can heal myself, I can go out and do a little. If we all did a little, we could move mountains. Can something so trite be still so true?

One day an old man was walking down the beach just before dawn.  In the distance he saw a young man picking up stranded starfish and throwing them back into the sea.  As the old man approached the young man, he asked, "Why do you spend so much energy doing what seems to be a waste of time?"  The young man explained that the stranded starfish would die if left in the morning sun.  The old man exclaimed, "But there must be thousands of starfish.  How can your efforts make any difference?"  The young man looked down at the starfish in his hand and as he threw it to safety in the sea, he said," It makes a difference to this one!" 

https://www.facebook.com/StarfishCatAndKittenRescue

Why I am trying this whole blog thing...

There are two things that I know. One, I had cancer. Two, I will never escape it. I may have survived, but I will spend the rest of my life paying for something I didn't do to myself.  I am starting to blog, because frankly, I don't see me reflected in the general cancer narrative.

I don't fit the "happy go lucky go climb a mountain" survivor mold, and I am definitely not carved from the "I had cancer so what" block. I am just me, a two time cancer patient who lacks patience. My story is not a unique one. It's not a special one. It's just my story, and I hope by opening up about it, I can help other people seize their own narrative. Because chances are good, I am not the only one lost between the aforementioned two poles.

When I was first diagnosed, I wish someone, maybe future me, would have shown up and said,

• Here's the real deal...cancer sucks...you really have no control over whether you will make it or not.
• The doctors won't ever be able to tell you, "it's gone." If they do, they are either hopeless optimists, or they whisper in their heads "for now..." 
• You will watch some of your friends die and some of them live, at random.
• People will tell you that you are an inspiration, and you will struggle with what to say. Part of you knows that they mean it as a compliment, and part of you may rebel at thought. They, after all, don't see you at 2 am in the morning in a sob fest...that's a rite only for the dearly beloved inner circle to witness.
• People will expect you to be positive when you are not. When you are having a bleak day, they will genuinely tell you to stay positive, and they will mean it in the best way possible. So you'll either be an inspiration or a downer, you get to pick.
• You won't ever truly out live the shadow of this diagnosis, and if you think you have, chances are good, you've just forgotten it is there. 
• This place you are going is where hope and fear live, breathing the same breath, living the same life, day in and day out.

When I was diagnosed the first time, I was 21. I had been married for 7 months or so. I almost had completed college, and I was ready to move on and move out. I found a lump in my breast, and that lump of "I'm sure it is nothing," turned into, "I'm sorry, miss, it is something." Fast forward six years, I was rushed to the emergency room hemorrhaging and sobbing in pain, and this time no one said "it's probably nothing." They were right.

So I'm 30, I made it out of twenties. I'm here, which I should be grateful for, and I have an awesome sweetheart, which I am grateful for. I have two dogs who think I am the moon and the sun, and I have an extended network of family and friends who treasure me.

I am, however, alone in many ways. I am alone when I add up my health insurance costs and realize I'm taking a 6% pay cut. I am alone when I look at the bill for a machine that would make it so I can keep working. I am alone when I look at the scars of my treatment: the two that streak across my chest, the one underneath my armpit, the vertical one above my belly, the constellation of dots left by tubes and robotic arms. I am alone every time I cut or burn myself and do not feel it. I am alone every time I fall, because I cannot feel my feet. I am alone every time I force myself to go swimming in the sleeting rain in a vain attempt to keep my lymphedema under control.

There's a divide between me and everyone else. A path that separates me from everyone else. I can see it, and they cannot usually, unless they say something casual like "you won't say that when your 40," and I reply, "I'd be happy to get there." The contrast between them and me becomes more clear in those silent moments. I try not to say these things. I'm a kind person, and I don't like making people uncomfortable, but I am uncomfortable all the time. My skin no longer fits, and I feel stretched thin. My resilience everyone so admires is an empty promise.

I am not comfortable with my diagnosis, and my blog might not be comfortable to read. I have found, though, that it is with this discomfort that I need to spend the most time. It is with this discomfort that I need to sit and be, because maybe I can make peace with it like an old injury. Maybe one day it will just ache, and I will simply know the weather is changing.

All is well,

Amanda