April 14, 2020
It turns out that living through a global pandemic and hearing the words “you have breast cancer” aren’t that different.
Today I spent the morning staring at the screen. The same screen I have been seeing for the last S-I-X-T-E-E-N days. I refreshed. I logged out and back in. I tried going through different links to get to the same screen. No matter how many ways I tried to force it to tell me something new, it wasn’t there.
No updates, no changes, no information. Just the same. damn. screen.
I keep trying to find the secret way to game the system. To find the backdoor in that puts me back in control but so far nothing. I’m at their mercy waiting for them to tell me when it’s going to be ok. And I hate that. It feels too familiar.
If you can’t guess what I’m talking about I’m referring to the New York State Unemployment Insurance website.
I did everything right, or at least as right as I knew how to do at the time.
I submitted my information, I called the number (over and over and over….and over), I talked to the person, and I waited. And I’m still waiting. And waiting. And waiting.
I’m not blaming the system. No one could have predicted that millions of people were going to be applying in such a short period of time including the self-employed like me (insert sarcastic eyeroll and tongue-in-cheek aside to a conversation that doesn’t belong on these pages…). I appreciate that they are trying to find ways to make it better – to add hours, ramp up service, increase online efficiency – I really do.
But it doesn’t change where I am now. Forced out of work by circumstances beyond my control. Frustrated, scared, and having to rely on others to make it better. Now why does this seem familiar?
I’ve been here before.
You think I’m making light of a shitty situation but there are millions of us who have been through this before. Ok so maybe not exactly this but, for many, the feelings are the same. See if you can follow me here…
You get the hint that something is wrong.
You start to have an awareness that something is up and it’s not good. It might be intuition whispering in your ear like a conversation you sort of overheard in a coffeeshop. It might be a little more direct like a headline on the morning news (or a lump in your breast that you never noticed before).
So you start to pay attention.
You begin to ask questions. You make some calls. You try to remember what you heard or read and you probably visit your old friend The Great Google. (BTW that is NEVER a good idea unless you are looking up the #1 song on your birthday for the latest FB challenge or learning how to replumb your entire house).
Then you call in the experts.
Once it’s clear you aren’t going to figure this out on your own and it could be more serious than you originally thought you call on those who know. It could be Dr. Anthony Fauci or your local general practitioner but you now know you need answers from trusted sources. And you realize you are willing to listen because you want to do the right thing. (meanwhile someone is surely telling you not to panic, you’re overreacting, it’s probably nothing).
And the reality of the situation is confirmed.
It’s clear now. This IS a pandemic. It is turning the world (YOUR world) upside down. Science can’t be argued away (even though right now you would even consider joining the flat-earthers if it meant it could). So what do you do?
You show up.
You listen to the doctors. You follow the protocols. You do what is asked of you because you want to live. You wash your hands more than you ever have before (yep that sounds right). You stay home and rest to protect yourself (and others). You wear a mask if needed when your immunity is low (you think this is new?). You stay hypervigilant for any sign of illness even though most of the discomfort you are experiencing is caused BY the treatment itself (hello social distancing and chemotherapy).
But mostly, you wait.
You wait to find out more information. You wait to hear what this means for you. You wait for the next step to know how long this is going to go on. You put your trust and faith in those who have your best interest at heart and you try to keep smiling despite the waiting.
You make the best of a bad situation.
You practice gratitude. You remind yourself there are those who are worse off. You pray (if that’s your thing). You find ways to fill your time with what you can do when so many of the things you love to do have been taken away (at least for now). You might have been forced to stop working. You might not be able to travel. You might beholden to a freaking website that keeps you waiting for new information when you have no way to speed up the process or take control! (sorry I digress…)
And most importantly you HOPE.
You dig deep and draw on the resilience that lives inside of you. You grieve The Big Suck that’s happening right now (because that’s allowed) but you focus on the days ahead when this will be over. Because “the good lord willing and the creek don’t rise”, this will come to an end. And you imagine life on the other side of it. You imagine life returning to the way it was before.
But will it?
Hard to say. I’ve never been through a pandemic before. I’ve only been through breast cancer. What I know is that my life is not the same as it was before. Sure lots of things resumed like I thought they would. I went back to work. I started to feel better once treatments ended (though it took longer than I thought). But even though I look like me, and talk like me, and walk like me, there are changes you don’t see that can never be undone.
The experience itself shifted something fundamentally within and I honestly expect this global health crisis will do the same for the world.
Will we be better off for it? Perhaps, some will. There are those who view cancer as a gift. Something that pulled them out of a rut or gave them new perspective. There are those who will find the same insight from this situation. They will focus on the decreased pollution and mother earth’s response or the time to slow down and focus on the little things that are really the big things like family and putting the greater good before our own wants.
But for most of us there will always be a lingering memory of how our world flipped in what seemed like an instant.
How quickly something beyond our control disrupted our world in the biggest ways. How we were stripped of our naive sense of control and perception of stability and reminded that there are possibilities of our reality, still unseen, that we can’t even imagine.
Hopefully for many of you reading this, the pandemic is an inconvenience and something to be tolerated, not a life and death situation (though sadly for many it will likely be just that on many levels). I also hope you never have to actually experience hearing the words “you have cancer”. But, if you do, one day when it’s hopefully behind you, you might find yourself facing oddly familiar feelings.
Welcome to survivorship.
Life after breast cancer is never the same.
Not even for people who go back to living happy, healthy, active lives for decades. It just isn’t. It can’t be. Too much has happened and there is always that tiniest of voices reminding you “it happened before so couldn’t it happen again?”
I’m not trying to be a downer. I have no problem saying that for some this side of cancer will be better than the life they lived before. But even for those unique souls, the memory of what happened isn’t easily forgotten.
And maybe it shouldn’t be.
Maybe it’s a piece of how we grow. How we survive the challenges that come next. How we face a pandemic and feel like it’s not the biggest challenge we’ve faced before.
And honestly I’m cool with that because I know I will get through this too. That I have what it takes to wait this out and keep smiling. To enjoy the binge watching, take a walk when I’m feeling up for it, and even, yeah, get a little productive on the good days. Because I’ve been here before.
But I sure wish unemployment would give me a freaking update.
Are you a woman living with a history of breast cancer? Or a woman managing metastatic disease? Do you wish you had a safe space to build community (without a lot of the noise found on the free online “support groups”)? We’re waiting for you in the As We Are Now Community!
Do you struggle with ongoing issues related to surgery and treatment like pain, restricted movement, and tightness? Have you heard about risk of lymphedema but don’t really “get it” and wish you knew what to do? Our 6-Week Body Empowerment Program is focused on helping you recover from the physical and emotional challenges of breast cancer by teaching you how to reconnect with your body so that you can reclaim a sense of personal empowerment. Join us for our next program!
Amy Hartl is a woman living with a breast cancer history and a mutated BRCA1 gene. She has built a career helping women come back to their bodies and their sense of self through the power of human connection. As We Are Now LLC is her latest effort at helping women recover, reconnect, and reclaim their bodies after breast cancer. She also loves to sing really loud in the shower, in the car, and while vacuuming. She can eat buckets of guacamole, misses Kenny Rogers beyond words, and travels the world whenever she is able. She also loves the Muppets and obscure pop culture references (if you catch the connection with the title of this post we are meant to be best friends).