Because of L

This morning, within 30 minutes of each other, I received a text from a friend that a local young man named Luke died of childhood cancer and a call from another friend that my neighbor was having surgery.

I didn’t immediately think about my own Luke, and thank God that it wasn’t him. I wept for Luke’s parents and brothers. For their permanent emptiness and the courage it will take to grieve.

About my friend, I thought, “that’s awful, how can I help?” not, “why didn’t she tell me?” I share this not to brag about how wonderful I am, but rather, to offer two thoughts.

First. Healing is possible and thank you for your help in my own healing journey. Years ago, amid my own grief and its corollary of self-absorption, I would have made my friends’ tragedy- and it is that- about me. Or, I would have diminished her experience altogether. Saying something (to myself at least) cruel like, “well, at least they caught it early.”

Second. A gentle suggestion. If When you are in the same situation- because tragedy finds us all- respond with love and empathy. Offer to help. Some of us believe that among #HurricaneHarvey, #DACA, #HurricaneIrma, the wild fires in the PNW we are in tragedy right now.

Grief was supposed to make me kinder, softer around the edges. It has. Healing is possible. But It’s one hell of a road. And you must do the work. You have to stay on the mat, as my friend G says. Stay on the mat. Don’t hit the easy button. I’ve learned that deflection and comparison are my easy buttons. I’ve also learned that they’re thieves. They steal people of their own grief and they rob me of the chance to be kind, to be a friend, to be a Christian, a fellow human.

Healing doesn’t mean “over it” or forgetting. I will never be over L’s diagnosis or the collapse of my career, or the betrayal of friends…or whatever events mark my life as before/after.

Healing means using my grief as fuel, instead of as a weapon. Healing means letting things impact me without defining me. Healing means action.

They will know we are Christians by our love. And love is a verb. Love and prayers are awesome and they helped us. They continue to help me. But don’t stop there. Too many of us Christians pray and think that’s enough. Pray, of course. All the time, for everyone. Pray to be inspired to act.

I donated to St. Baldrick’s in honor of Luke. Some friends and I are rallying to create a schedule to help our friend with housecleaning and meals. I hope you will feel inspired to act as well.

 

Anger makes people uncomfortable

There are five stages or parts of the grief process: Denial and isolation; anger; bargaining; depression; and acceptance. You can be in multiple “stages” at the same time and you can cycle in and out of stages. Meaning, it is possible to go through a stage and then go back to it. Over and over again.

A dear, dear friend of mine posted a graphic about the lack of funding for childhood cancer research on her facebook wall in September, which is national childhood cancer awareness month. She did this on her own. I commented and said thanks. A friend of hers (I do not know him, never met him) commented on the post as well and then compared childhood cancer funding with breast cancer funding. I wrote back and said it IS low when you consider that ALL 13 types of childhood cancers get 4% of the NCI’s total budget….blah blah. Two days later a different graphic came out. I shared it on my friend’s wall and said she should share it with her friend. Apparently, that was attacking him. I still don’t see that. But, he felt attacked and it happened on her wall so I apologized. I even wrote my version of a mea culpa post about it. You can read that here.

Since then, she and I have gone back and forth about my anger. She is a very good friend of mine and I appreciate her bringing all of this to my attention. I really had no idea how I was being perceived by others. I am doing what I do, which is try to raise awareness and advocate for children, who cannot speak for themselves.

She finally asked me what I was so angry about. Here’s my list:

  1. My three year old son almost died. (anger)
  2. He was diagnosed with stage 4 cancer in 2008. His team of oncologists told us once, “we will take him to the absolute brink and then bring him back.” They were right. The things that were done to my son’s little body are unspeakable. (anger)
  3. I wish that I had seen his tumor sooner. The cancer might have been stage 1-3, thus decreasing his treatment time and increasing his long-term survival rates. (bargaining) I am his mother. I am supposed to keep him safe.
  4. I am angry that I didn’t care about childhood cancer before my son was diagnosed. It’s the #1 disease killer of children. #1.
  5. I am mad a big pharma for putting money and profit ahead of patients’ lives.
  6. I am angry that Americans care more about boobs and penises than they do about kids.
  7. I am angry that the general public thinks childhood cancer is rare.
  8. I am angry that the general public thinks there is an 80% cure rate.
  9. The treatments that were used to save my son, could end up causing significant long-term damage (heart problems, growth problems, cognitive issues, puberty issues) and/or cause secondary cancers (skin cancer and/or leukemia).
  10. My son lived and others do not. I am angry that I have survivor guilt. I am angry that I am angry because I should be grateful and compassionate. If I keep advocating and raising money and awareness then fewer kids will get cancer and die (bargaining again).

Anger makes people uncomfortable. They equate it with violence. Which is sometimes true, but not always. The hard part about being angry with cancer is that there is nothing and no one to take it out on. Cancer is nebulous. There is no perpetrator that can be brought to trial. It is just out there. And those of us who have been forced to deal with it are left…

floating.

When I think of anger, I think of that scene in A few good men when Jack Nicholson says, “In places you don’t talk about at parties, you want me on that wall, you need me on that wall.” Of course people get angry. We all do. We are all humans. But, there are very few spaces and places where it is ok and acceptable to express your anger. It makes people uncomfortable. I get it.

I wish I weren’t angry. I wish that my son didn’t suffer the way he did. I wish. I wish. I wish. I can’t go back. I know this. And I am trying to move forward. The stages of grief are real. So is PTSD. There are triggers everywhere. Even the amazing Leah Still and her dad Devon’s heroic efforts to raise awareness and money are triggers. My son was once completely bald, too. Four years ago was both a lifetime and just yesterday.

Sometimes, the release of lashing out or posting snark is easier than the truth. But, that release is only temporary.

The truth is, I am not angry. I am scared. I am absolutely terrified that my son will die.

I have the right to be angry. And I am right to be angry. What happened to my son and our family was horrible, wrong, unfair, scary. What I am learning though is that what happened to us doesn’t give me the right to be self-righteous. I am working on that last elusive stage: acceptance.