HONY and electronic breadcrumbs

I wrote about HONY(Humans of New York) once before, expanding upon my thoughts regarding the blessings that are found in this country, compared to war torn countries.  I still follow this Facebook page, a glimpse of everyday people with 'normal' or perhaps just different concerns.  I have taken up residence in a pediatric hospital with my son and use it as a way to check in with the outside world.

This is my second HONY story:

A year and a half ago, my son Brent and I were in NYC for follow up with his orthopedic surgeon at MSKCC, after the long and difficult treatment for osteosarcoma.  Brent had received fantastic news that he didn't need to return for a year.  We were celebrating.

Just prior to this travel, Brent had sentinel lymph nodes removed to be sure that his new cancer, melanoma, had not spread.  We were waiting for the pathology results.  Three hours after finally finishing osteosarcoma, we learned that Brent only exchanged his osteo placard for one reading 'metastatic melanoma.'  I was devastated.

As we flew back to Ohio,  I was filled with worry and fear.

At that time, I must have stumbled across a HONY post and impulsively commented.  I generally take inspiration and encouragement where I can find it.  This HONY photo showed a man in a wheelchair.  The caption read "Had cancer six times. Beat cancer 6 times."

On Feb 12, 2014, I responded at 10:32 in the morning.  "I needed this, in the exact moment that I saw it.  Thank you."  I have no specific recollection of making this impulsive comment.  It was a year and a half ago.

About a week ago, around the time that my daughter had her brain surgery (incidentally this was cancer number six between our children) I got a FB notification that someone 'liked' this comment. This is a website that has over 13 million followers and gets thousands upon thousands of comments per post.  Suddenly, someone that I didn't know liked a comment that was buried in over 6,000 comments, in a post from well over a year ago, one that I had completely forgotten that I made.

I thought that this was odd, but found a breadcrumb of encouragement in it.  In this crazy mutant life,  I pray for breadcrumbs every day.  I pray for God to show me the way out of the wilderness.

But each day since then, and sometimes more than once a day, I have had notifications that someone "liked" my grateful comment about the man beating cancer six times.  It has been a sort of gentle encouragement to me, a private reassurance and moment of wonder each time I saw an additional notification,  as we have been fielding challenging news with both of our children who are duking it out with cancer.

Yesterday morning, I finally shared this story with a dear friend.  I told Julie that I am not thinking that God lives in Facebook, nor speaks through Brandon, the HONY author, but that this was so very unusual.  Somehow, I feel things might just be ok.  She reminded me that there are no coincidences in this life.   God works in mysterious ways.

That is no lie.

I went on to have a long and emotionally draining day in the hospital.  My husband and I sat in a meeting where they outlined the various ways that my son's bone marrow transplant could go horribly wrong, and ways that our son might die.  I fully recognize that they must talk about risks, and BMT is a most dangerous proposition.  With bone marrow transplant, they take you to the edge of death, and hopefully keep you on this side of it.  Knowing this is one thing.  Hearing it spoken aloud is quite another.

I stepped out last evening with my sister to vent and grab a bite to eat.  After relaying the details of the oncology meeting, I shared my HONY story with her and the electronic breadcrumbs that I have been getting this week.  I am not the sort of person that goes looking for images of the Virgin Mary in a potato chip, but this feels somehow comforting. Laurie pointed out that being comforted is never a bad thing, as we walked back to the hospital together.

I went online to wind down before going to sleep to the sound of IV pumps and hospital noise.  I found another "like" on my notifications and smiled in the darkened room thinking about the ultimate survivor and the breadcrumbs from God.  Then I scrolled down to see a new HONY post about cancer.  The photo was of a man at a baseball game. Caption:

“I’m trying to beat cancer for the fifth time. The first time was in 1997, and the doctor told me that I’d only live for six months. I’ve had it in my armpit, my knee, my back, and twice in my groin. Life keeps throwing me curveballs. I keep hitting them.”

I found further encouragement in this post, on a site that is not generally about cancer and could have just as easily shown a fun photo of a toddler: "Today's micro fashion." I scrolled down, reading some of the comments and soon came upon the photo of the man in the wheelchair who I had been talking about only an hour earlier. The person who posted the photo said: "You should talk to this guy."


I slept well.

HONY, Cancer and the Ivory Coast

I follow the HONY page on Facebook, which is fantastic.   A man walks the streets of NYC and takes photos of average people (and admittedly, in NYC, there is no shortage of ‘characters’) and asks them some questions.  He posts the brief interview, or a caption, and the picture. 

I enjoy it, because I love NYC, having spent much time there while my son Brent sought treatment at Memorial Sloan Kettering Cancer Center, but also because I believe that there is something very powerful in what Brandon does.  He finds terribly interesting, funny and touching stories out of the most unassuming people.  And I believe that he challenges people to look at those around them in a new light.   Everyone has a story, if we only stop to consider what it might be.

I have never seriously commented before, generally reading others responses and trying on the various perspectives, both of those featured in the photos, as well as that of the commenters.  Today, with the photo of a man who left his violent homeland on the Ivory Coast, seeking a better life here, I wrote the following:

Ann Ramer: I think that we do not understand what political stability offers us.  Political stability allows us the luxury of griping about our government, rather than fleeing it.  We are blessed here.

Ryan Pulito: Political stability? You mean when one group has a monopoly on the use of lethal force?

Ann Ramer:  I mean when we have orderly elections that result in the peaceful exchange of that "monopoly on the use of lethal force" In other countries, this is not consistently accomplished. And there are enumerable blessings that come with this fact within our country. I acknowledge that many things are not perfect. But, without this basic foundation, so much else becomes impossible, things we take for granted, enough to even complain about the imperfections.

 

I did not want to get on a soap box, long posting on someone else’s site, but I thought much more about this today and thought that I would share.  I have my own blog after all.

While I disagree with Ryan Pulito, I really do not want to get pulled into a pissing match with him.  The political contentiousness that we have in our country,  I also consider that to be a blessing, not experienced in many other countries.  While some despairingly say that we have never been so ‘divided’ in the US, and conversations certainly can become heated, they are combative conversations, not actual combat.  Talk to someone from Somalia, or Syria or many other places in the world, and they can explain the difference.

I have been thinking a lot today about those blessings that we are afforded.  One, interestingly enough, is Pediatric Cancer Research, which we strongly feel is grossly underfunded.  We are blessed with both the opportunity to complain about it, as well as the opportunity to do something about it, precisely because of the political stability we have in this country. 

How much money do you think is invested in cancer research in war-torn African countries?  How many research facilities exist there?  I imagine that there are not many, because building elementary schools and hospitals is a big enough challenge.  Survival, in the most immediate of terms, is the highest priority.  It has to be. 

And because of this, everything else falls away to a very distant second. Investment in such sophisticated things as genetics labs or cancer research facilities, ones that might easily be taken, or destroyed, seems very risky.  Investment in science, quite frankly, should be a low priority if you are more likely to die in violent political reprisals.  Someone wise once told me, "Battle the shark closest to the boat."  Cancer is clearly not their shark.

Our stability, and the long general experience that we have with peace within our borders (recognizing, and in no way diminishing, the occasional episodes of violence, such as 9/11), permits us to have investment in cancer research, facilities adequate for the task, and scientists and doctors educated enough to tackle these tough problems. We assume peace, because we have no memory of anything else.  We proceed and invest accordingly.    

It all starts with the foundation of political stability, a blessing that I do not take for granted.

With an absurdly rare genetic predisposition to all forms of cancer (Li-Fraumeni), and two children with cancer (and 3 different types between them), I maintain that we are lucky.  Lucky to live here.  Lucky to live now.  And lucky to have the opportunity to try to help researchers advance their understanding of cancer and of genetics. 

We are very blessed to have no bigger fish to fry, or sharks to battle, as others in the world do.  We do not worry about feeding our children, or about violence likely visiting our home. 

We do worry about cancer visiting our home. 

But we have the opportunity to do something about it, which, as I recognize, is its own blessing.