I am still here

I made it home and I’ve been plunged back into my life of routine.  I am caring for my son, working, working out, responding to requests for help related to church, and running my household.  It’s been a little overwhelming.  The NIH experience, in some ways, felt like a monastic retreat.  I was able to really focus on staying present and staying open.  Now that I’m swimming in the to-do’s of modern solo-parenthood, I’ve felt a little lost.  I feel myself dissolving back into scarcity.  Scarcity of time and money and energy. 

For the first time in the last two years, I contemplated reducing my work hours.  I wanted more energy to focus on this, my writing.  But at the same moment I was contemplating that, I was feeling blocked with what to write.  I had planned to give myself a few days to get back into life before posting again after my trip, and even though I’ve had ideas of post topics swirling around me, nothing has been flowing. 

On my last day at NIH, I joined a Facebook group for pheochromocytoma and paraganglioma support.  I have never before been willing to do this.  As I alluded in my previous writing, I was usually left feeling fearful when I heard about other people with my condition.  They were so much worse off than I was.  Now I have been exposed to their stories.  I am touched by the people who reached out and said that my writing spoke to them.  It actually feels incredibly humbling that my honest account is reverberating in someone’s heart.  That it is giving them permission to throw out the old measuring stick, or at least to question it. 

One thing, in particular, that has really stood out to me in between the lines of these stories about tumors and radiation and surgeries and chemo, is that each one of these people is living a life beyond cancer.  And for some, the cancer is not even the biggest concern.  They, like me, are facing divorce, raising kids, caring for family members and friends, and holding down jobs.  Rather than bringing the existential questions to mind, we are all grappling with how to go on living in the face of the massive inconvenience of symptoms and treatments and tests.  We are buried in the day to day, just trying to get by.  We don’t know how to help ourselves.  The emotional labor of life maintenance feels like a burden that cannot be relinquished, even in the face of death and disease. 

And layered on top of this, is the expectation of a hero’s-journey cancer story, where one submits to the treatment and comes off, not only conquering the disease, but doing it with grace and style.  Where all onlookers marvel at the positive attitude and the never-say-die mentality of the “cancer survivor.”  But we know in our hearts that we are falling miserably short of that.  We still yell at our kids.  We still can’t summon the energy to perform tasks that we are physically capable of, but lack the mental fortitude to tackle.  We are still trying to outrun the pain and confusion by working long hours and taking on extracurriculars.  We are still incredibly angry at God or fate or biology that has dealt us this hand of unending uncertainty, and we cannot find a graceful way to diffuse this.  So we hold it.  And we silently judge ourselves for our lack of courage.  Our inability to live each day like it was our last.  Because how do you do that when life marches on and the kids have homework and groceries shopping needs done and the dog needs walked?

I get it.  And yet, I have my own feelings of inferiority about speaking on this topic, especially to people with much more aggressive and advanced disease.  I have struggled with how to raise my hand and put forth my story, which is, thankfully, so much less dramatic and eventful than many.  I know I have struggled with survivor’s guilt.  I don’t know what I’ve done or not done that has contributed to my remarkably uneventful 13 years since diagnosis.  And because of that, rather than feeling thankful, for most of those years, I’ve been waiting for the other shoe to drop. 

I guess all I can say to those facing terrible odds or a fog of uncertainty, is I AM HERE.  After 12 years, which included an intensely stressful marriage, one year of international and domestic travel, graduate school, five moves to five states, one healthy pregnancy and delivery, and a lengthy and difficult divorce that is still in progress, I AM STILL HERE.  It is possible.  It is okay to allow yourself to hope. 

I remember wanting to hope, but I didn’t know how to get there.  My hope was buried in a pile of shameful thoughts about how I SHOULD be navigating this experience.  I thought I was bad for not having more positivity or gratitude.  I thought I had to hustle for worthiness.  I thought that if I checked enough boxes that I would be worthy of my desires.  The way out of this, for me, has been to drop those ideas of how one SHOULD navigate life, and to work on knowing and hearing myself.  This is the only advice that is worth anything, especially when you are considering a chemo treatment that has a 30% success rate. 

There are no templates for this realm.  No recipes for success.  There’s just you and your body and what science has to offer, which is sometimes pretty shitty.  And the beauty of this, is that your best path is the one that feels right to you.  This is true even if your family disagrees, even if you have to make doctors uncomfortable, even if you have to keep clawing and fighting to get something you need, even if it means doing nothing but watching and waiting, even if it means more pain, even if it means that you take up space in the world that you never planned to occupy.

This is the recipe for living each day to the fullest: be still, listen to yourself and then have the courage to tackle the shit out of whatever it is you are to do.   

And, on the inevitable days when you lack the strength to do this, stop, look at yourself in the mirror and speak the words, “I AM STILL HERE.”

     

Shine some light my way. Tell me your thoughts!

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