Survivor guilt’s a bitch

While driving to GR to teach, I chatted with a fellow childhood cancer momma.

I went to class and had an absolute blast. Teaching feeds my soul. My job sucks it out and teaching on Monday nights restores it. Tuesday and Wednesday I was an absolute bitch. Moody, passive aggressive, mean. I know why; I’ve been here before.

Survivor guilt.

The momma I spoke with lost her son. She walked a completely different path than mine. Hers is worse. Way worse. Everything that we did for L, she did that and more for her own son, only it didn’t work. Her path is gut-wrenching, catastrophic. Cruel. Unnatural. Wrong. Parents should not bury their children. Ever.

Yet, while we talk she is kind, funny, gracious. We laugh. A LOT. She asks about L. Always. “How old is he now, what is he into, how is he feeling?” In the moment, these comments are lovely. I am awed by her ability to think outside herself and ask about my son, when her own is forever 11. Days later, I feel ashamed. Her kindness is too much. The light is too bright and I have to look away. I feel unworthy, naked, hypocritical.

Survivor guilt is a black hole, a vortex of rage, regret, and shit. It’s shit. My inner monologue is a barrage of anger and hope; grief and light:

I hate my job. But I shouldn’t hate it because my kid survived. My kid survived. I hate my job. I am not allowed to hate it. Yes, you are. You worked for five years to earn a degree that you thought would help you get…somewhere. You’re allowed to be frustrated. You’re allowed to strive for more. Or different. Nuh uh uh. No you’re not. Your kid survived. That was a gift. Suck it up. This is as good as it gets.  

My Facebook feed is people whining about Kim Kardashian and asking for video of her kidnapping. WTH? What in the world is wrong with people? The very next post I see is someone begging for prayers because another child is dying of cancer. I see things happening and sometimes feel as if I am the only one. I look over my shoulder like, “Do you see this? Can you believe this?” Fear, anger, people hurting. Six year olds get shot at school. We’re on the verge of World War 3 in Syria and a deranged bigot is running for President. There are kids at my sons’ school in a wealthy mid-west suburb who come to school hungry. A hurricane destroyed Haiti. Again. I get angry, like shake-my-fists-at-the-sky angry. “Why aren’t people noticing? Why don’t people care?”

I want to call my friend back and shout: “Please stop. Stop being so kind. I don’t deserve it. It’s too much. Too much. Why aren’t you shaking with rage? Everything you went through and…..”

While I was home sick two weeks ago, I tore through Glennon Doyle Melton’s new book, Love Warrior. She refers to herself as a canary in a coal mine. Canaries are brought in because they can sense toxins better than humans. When the canary stops singing, it’s time to go. She stopped singing because she sensed toxins. That doesn’t make her crazy, it makes her smart.

Maybe I am a canary, too. I see and feel things that others don’t. Maybe that makes me…me. I should embrace that person, instead of feeling bad that I feel all the things. I need to pull myself out of the guilt spiral and find a place that wants to hear my song. Because really, it’s not guilt I feel. It’s shame. I am ashamed that eight years post-diagnosis and six years off-treatment, I am still…not where I thought I would be.

I am supposed to be different as a result of L’s cancer. Aren’t I? More aware. More…something. Wouldn’t that have made 2008-2010 “worth it” on some level? Aren’t I supposed to be gracious and kind and loving, like my friend who is a tireless advocate for our kids, while she also grieves? Always grieving. She has been through hell and is a better person than almost everyone I know, when she could be angry for the rest of her life and be completely right in doing so. I quickly give others the benefit of the doubt, but never afford myself that grace. I see my friend as amazing. I see myself as a failure of graciousness. I secretly fear that if the roles were reversed, I would not be nearly as kind as she. My kid survived and I wallow. What would I be like if he hadn’t?

I have no idea what my momma friend thinks. That’s not my place. I am starting to believe that my role is to share good things so she can rejoice in them. Maybe hearing about kids who do make it helps her heal. Maybe that is part of how I can give back and heal, too….Show all the good. It brings me joy when I see others happy and thriving. Why wouldn’t my son’s progress and our happiness do that for others as well? I wonder if I secretly fear my own happiness.

I should pay more attention to my friend’s generosity. And really, that of all grieving mothers. There is not a single one who has ever made me feel bad that Luke survived. Ever. They have rejoiced more than me because they know the other possibility and they don’t want anyone else to endure it. That is the mark of a warrior and a survivor.

Grief and guilt are sneaky. Around the corner is a landmine that blows you back or a memory that makes you smile. It just depends on the moment, the millisecond that it catches me. Some days I am fine. I see pictures of baldy Luke and think, “Wow that was a different life. Thank God that’s behind us.” Other times, an amazing phone call with a friend pushes me underwater.

Glennon (we’re on a first name basis because I’ve read both her books, she signed my second one, I’ve heard her speak in person, and she retweeted me a few times) also says that maybe life is just hard because it’s hard, not because we’re doing it wrong.

Maybe grief and survivor guilt survivorship are like that, too. Maybe it’s just really hard.

It’s okay that it’s hard

I have written very little on this blog about my work in higher eduction and academic advising. I think this is mostly because I fear being honest in such a public forum. In my personal and professional experiences, I have found that really, really honest people such as myself are usually labeled as negative, or nay-sayers, or resistant to change, or blockers. Or, I think people are going to ask, “why do you do what you do if you don’t like it?” Or, they have actually said that to me.

I am reading Glennon Melton’s book, Carry On, Warrior. I cannot put it down. Yesterday, I read this gem:

“I love having written. And I love having parented. My favorite part of each day is when the kids are put to bed and Craig and I sink into the couch to watch some quality TV, like Wife Swap and congratulate each other on a job well done. Or a job done, at least.

Every time I write something like this, readers suggest that I’m being negative. I have received this particular message four or five times: G, if you can’t handle the three you have, why do you want a fourth? That one always stings, and I don’t think it’s quite fair. Parenting is hard. Just like lots of important jobs are hard. Why is that the second a mother admits that it’s hard, people feel the need to suggest that maybe she’s not doing it right? Or that she certainly shouldn’t add more to her load. Maybe the fact that it’s so hard means she IS doing right, in her own way, and she happens to be honest.”

(Melton, 2013, p. 113)

BAM! YES! I totally and completely agree with everything she writes about parenthood in this passage. And, all I have to do is substitute “student affairs” or “higher education” or “academic advising” or “being a working parent” for “parenting” and it describes most of what I have been feeling as a professional.

I don’t particularly get my students right now. They are frustrating to me. I think it is completely inappropriate that they come to appointments with me totally unprepared.”Tell me about your program” they say. So, I smile, launch into my spiel and do my job. But on the inside, I am saying to myself, “That’s not a question. Please come back when you are really ready for this meeting.”

Or, they are so prepared that all they do is recite the website back to me and then ask me if the content of the website is true. Seriously? Like I have the time, energy, or forethought to make stuff up on our website because I want to trick you and make more work for myself. I am not quite sure what all that is about. I am constantly evaluating and thinking about that. Generational differences? I have unrealistic expectations of student behavior? All of the above? None of the above?

I think right now my job is hard because I am not saying everything I think. I am not being honest. I am biting my tongue so hard I am surprised it hasn’t fallen off. Somehow in this profession, honest got translated as mean and being developmental means treating students like Faberge eggs. And, my frustration is that in student affairs I perceive that there is pressure to looooooooove what you do, all the time, all day every day.
Via Twitter and Facebook and professional organizations, I am constantly barraged with messages that professional frustration equates to unprofessionalism or lack of fit. I wonder if I am alone in this? I wonder if my colleagues- especially my fellow working-parent, mid-career, dual-career couple colleagues- feel the same way?

I would love to hear from you. What are your experiences with your job? Are you frustrated? It’s okay if you are. It’s okay if you aren’t. Are you allowing yourself to feel that way? Why or why not? Reading about another mother’s experience gave me space to confess that right now, it’s hard. It’s okay that it’s hard. It wasn’t always this way. It won’t stay this way.

Seeing gold

I follow Glennon Melton on Twitter. A dear friend of mine introduced me to her blog, Momastery. For the most part, I like her stuff. She is funny, honest, and like the rest of us working to be the best mom she can and doing it in a positive way. I like that. I am also trying to do those things and spend less time in the negative judgey place that leads nowhere good. Today is not one of those days.

A guest blogger on the Momastery site wrote about her son’s autism diagnosis and how it has impacted their family. http://momastery.com/blog/2013/06/20/not-your-typical-mom/

There are many parts of this post that resonate with me. The devastation of a diagnosis that seemed to come from nowhere; the challenge of learning a new language of medical terms and treatments; long-term prognosis; impact on her marriage; caring for a younger sibling. The list goes on and on. I get it. I have been there.

And then, I read this: “I had irrational thoughts. I remember thinking- I wish Greyson had cancer, then there would at least be the possibility that it could go away.” Emphasis hers. And now I am seeing red. I am absolutely seething right now. The Momma bear is out in full force.

My post is not about this woman in particular. I don’t know her or her family. And this post is not about Momastery. I admire Glennon and her work.

My anger stems from the complete lack of awareness and understanding about cancer in children and how far we still have to go. Clearly this blogger knows nothing about childhood cancer. How prevalent it is- It could have been either of her sons or one of their buddies. How dangerous it is- 80% of our kids are STAGE 3 or 4 at diagnosis, thus greatly reducing their long-term chances of survival. How long and draining treatments are- YEARS. How OLD the medicine is and how lacking the technology really is for kids- developed over 30 years ago, for use in adult patients. How much money really goes to the kids- 4% of the NCI’s total budget. Mere pennies when compared to adult cancers. RAWR.

And, that’s the rub. This woman is doing all that she can to get her son all that he needs. She is coping. She has irrational thoughts. I get it. Been there. I remember at the very beginning wishing that our son had been diagnosed with leukemia because I thought (at the time), that that was the “good cancer” to get. Talk about irrational thoughts.

What is dangerous about this woman’s post is the complete ignorance it displays and the number of people it will reach who will blindly gloss over her words about childhood cancer and focus on the part about “the possibility that it could go away.” Some people will read her words and not even see that part. For most people, cancer is treatable. It is something that adults get as a result of their unhealthy lifestyle choices, smoking, or genetic risks. And as a result of the pervasive pink-washing (and soon to be public service announcements about men & their prostates) most people also believe that we are making progress against cancer.

Unfortunately families who have been devastated by a childhood cancer diagnosis know different. We rarely have “the possibility that it could go away.” Instead, we live with the reality that it could come back. It could come back worse than before. If it does, the chances of survival are even less than they were the first time. Instead, we live with the possibility of a secondary, new cancer which could have been caused by the very treatments that were used to save our babies the first time. And for some families, their child’s cancer never went away. It stole their children and they died.

I am frustrated because there are people out there, there are mothers out there, who still believe that their children are untouchable. And even worse, there are still mothers out there who believe that even if it did happen to their child, that it could just go away. Like they can take a pill, or cut off boobs (kids don’t even have boobs), or remove moles that look suspicious and then your kid will be cancer-free.

Mostly, I am frustrated with the childhood cancer community. Yes, good things are happening and there is awareness out there that didn’t exist before. I am thrilled for that. I was part of making it happen. But, I am realizing just how far we really have to go. And, that within the childhood cancer community, we need a stronger, more pervasive message that isn’t about anger or fear (ironic given the anger of this post!). We need to find a way to speak with words that will be heard. I am still searching for them. I won’t stop. I hope, I pray, I wish, I dream that others will be touched by our experiences and join us.

Going to re-focus the rest of today and see GOLD (not red ;))

Gold Ribbon

Kids get cancer, too!