I’ve had a few posts in my head that I’ve been reluctant to write, in concern that I might offend some of those who have offered support to me, but also not wanting to use my recent illness to be critical instead of positive and inspiring, but with that said, I think the following post is important enough to put those concerns aside, especially since I’m in the throws of it at this point, on the verge of surgery, my patience wearing thin and my emotions shifting from hour to hour. So let me just summarize this outright, and allow me to steal this phrase from another writer on the subject, and which doesn’t mince words….
It’s. Not. About. You.
Trust me in that I don’t say this in a manner of scolding, or even passively aggressively addressing this to a certain individual or individuals (more on that later). I’m not. But it’s worth repeating. IT’S NOT ABOUT YOU.
And although I’m going to talk about my own experiences, I’ve come to understand through reading accounts by others suffering from disease or illness, terminal or not, the sentiment is universal.
Since making my cancer diagnosis public just about 2 1/2 weeks ago, I have absorbed an overwhelming amount of support from friends, family and strangers, all in relatively unique and varied ways, but also residing in certain parameters of understanding and in a manner of playing it safe, treading lightly. Initially, I brushed off the concerns that friends expressed to me in their wariness of “saying the right thing” or even “not knowing what to say”, but as the surgery date nears, and again, my patience wears thin, I’m beginning to understand the importance for the supporters to tread lightly and take the safest route possible.
To be honest, this has surprised me.
I thought I was going to remain pretty normative in my emotional state, absorbing others sentiments and gestures as I do in more expected situations, you know, those not drug down by the weight of a quickened dying, but instead I’ve noticed my normal social behaviors adjusting by the moment, and where I could easily take the personalities and character intricacies of others without offense, I’m now much more vulnerable and therefore PROTECTIVE of my own emotional state. This has probably confused some of my more closer friends, so I hope to clarify my sudden changes in behavior lately.
As anyone who knows me rather well….or even not so well…it probably goes without saying that I’m the type that prefers to overshare rather than stay silent. I speak my mind, as constructively as possible, but speak it no less. I’ve been described as “transparent” and “brutally honest”…guilty as charged…and I’ve purposefully and inherently been open about my experience dealing with this cancer diagnosis from day one, which I understand might lead others to think they can interact with me in the same way they always have in the past…but now I realize they can’t.
And it doesn’t seem fair.
It doesn’t seem fair that I get to carry on and on and on through my blog writings, post as many normative statements on Facebook as I have in the past, carry out and express my emotions as I have become accustomed to pre-cancer…..but then respond to gestures of support by others in a way that seems counter to my expected sense of normalcy.
It’s not fair that I get to say, “I want to see so many friends before I go in for surgery next week! Let’s hang out!” and then when friends contact me again and again to meet up, I’m suddenly busy, finding excuses to be alone, or even silent to their requests.
And I’m sorry. I’m sorry because I know it’s confusing.
But I need to say this….It’s not about you. Right now I’m accepting an incredibly unique and unexpected moment of blunt and unapologetic selfishness as I prepare for this surgery. I’m doing what’s best for me and not giving much thought to other’s needs and concerns. And I’m sorry…but this is what I have to do. And so, It’s not about you.
Not only is it not about your needs right now…but my behavior is not about your gestures either. You are not at fault. No one is.
See, I’m facing down this life threatening disease, this quickened dying process, this risk of invasive surgery, this complete reworking of my life from Monday and onward…and that’s not even the extent of my worries…so suddenly I’m…not unstable…but protective. I’m protecting my emotional state and protecting others from my emotional state. I’m handling things differently (or maybe MORE honestly) than I often do.
Right now, I’m going inward. I’m simplifying even more than I usually do, which is saying a lot. I’m keeping all externalities to an absolute minimum, so I’m not hurting others and not getting hurt myself….it’s how I know best to deal with this situation…and it’s what you need to understand.
For those facing something emotionally weighted like this, the best thing you can do is offer two things.
1. A gesture of support. Express a sentiment of kindness or encouragement, even if that means saying, “I don’t know what to say”, and expect nothing in return. Don’t feel hurt if the individual responds differently than you had hoped. Don’t be hurt if they don’t respond at all, because again, it’s not about you.
2. Offer availability (if you are in the position to do so). If you can be available, offer that, but don’t expect it…and don’t hound it. Put it out there and walk away, because trust me, if the person feels like they need someone, whether that is to talk to, unload on or to distract themselves, they will contact you. Just offering your availability is what is most important above anything else.
That is all you need to do as a supporter, because both of those gestures leaves the decision making up to the person dealing with the emotional weight themselves. It keeps the ball in their court. It let’s them call the shots. It keeps the situation about them and not you.
This isn’t to say you don’t have something unique or unseen to offer the suffering individual…not at all…but that doesn’t even matter. If the suffering individual needs something more than what they are getting from their selected avenues of support, they’ll continue to look elsewhere, and it’s up to you just to be available and be there should they contact you. No matter how powerful you can be for them, don’t interject yourself into their place of need…they may not want you there. And it may be confusing. It may feel to YOU that they are making a mistake…but they aren’t. For SOME reason they may feel the need to be alone or keep their circle of support to a minimum, and most likely it is going to come from a protective need, and although you may not understand it, you must trust it and accept it.
Years ago a stray cat I was helping take care of suddenly went absent. A few days later I found him lying by the garage door, listless and apathetic. I moved him to a more comfortable, less vulnerable spot, but he went right back to that position open to the weather and predators. After a couple days of this behavior, I realized he was dying. He was protecting himself in the face of an irredeemable circumstance. Still, I took him to the vet and it was discovered that he had feline AIDS, to an untreatable extent. The vet picked up his limp body and purposefully (but gently) pushed his head into the side of the exam table. The cat didn’t protect himself, didn’t lift his head to avoid the collision, didn’t respond to the discomfort. He knew what was coming and had accepted it. We put him down. But if we had brought him home, he would have undoubtedly gone right back to that spot by the garage and let himself die, incomprehensible to me, but instinctually right and comforting to him.
Fortunately, I’m not a dying animal. Ok….I AM, but not irredeemably. I’m going to live, but that doesn’t mean I don’t feel the need to protect myself right now, and so I’m surely acting in ways that confuses some of my close friends, but feels absolutely right to me. Because right now, It’s about me. So I’ll do things like this…
“Hey! I want to see you before I go into the hospital!” I’ll tell that to you in the morning. And by the afternoon I’ll suddenly say, “Hey, I can’t make it. I’m busy. I’ve got things to do.” And then by the evening I might say, “Can you meet up?”
Or you might text me…and I won’t respond. Or you might have made plans to see me in the hospital when I’m available for visitation and I’ll suddenly go quiet at the prospect. Because, honestly, I don’t know what I’m going to want right now. I don’t know this from day to day and hour to hour. I’ve driven 15 miles north to sit and write, because it’s theraputic, because it feels right, because it somehow feels good to be alone, but after sitting for an hour I suddenly feel like I want to be home…so I drive the 15 miles back home. And by the time I’m home, I don’t want to be there and drive back North right to the same coffee shop I left from to write some more.
And sometimes I want to see people, and the second I’m contacted by 15 people who have made themselves available, I suddenly feel overwhelmed and want to be alone again. I walk into coffee shops and see people I know, then instantly turn around and walk away because I don’t trust myself to respond how I feel is best.
I’m emotionally vulnerable and I have to protect myself. I walk through the back door of my favorite coffee shop and see people whose personalities I usually enjoy, but suddenly walk right back out the front because in that moment I can’t handle them. The extremism in character that I find so valuable and exciting in normal circumstances has now become dangerous to me and I prefer neutrality and solitude. It doesn’t make sense, I know.
And I’m physically vulnerable. I walk into coffee shops and if the available seating isn’t the kind I wanted, I leave. I walk into coffee shops and if it’s too cold, or the light sucks, or just doesn’t feel right, I leave and find one that works for me.
I’ll be driving home and suddenly stop at a business I frequent because I felt the need to have a simple conversation with someone I’m comfortable with, but then reject an offer to spend time with a good friend because it just doesn’t feel right.
And sometimes my body is just not cooperating. I’m experiencing varied degrees of stomach pain due to the foods I eat or other things going on inside me, and I just don’t feel like talking. I don’t feel attractive. I don’t feel motivated. I don’t feel like suffering through the pain while trying to hold a valuable and constructive conversation.
And I’m sorry, but it’s not about you.
And at some point in the future it WILL be about YOU, but I can’t honestly say when that will be. I have had so many people say they will be there for me when I can have visitors at the hospital, and all I need to do is put out the call and they will be there….but here’s the thing…that call may never come. Right now, I still want to be alone. I don’t envision wanting people to come see me when I’m able, for many reasons…but that may absolutely change. When the time comes, I may want a line out the door. I just don’t know, but I have to protect myself. I have to keep this about me…and I know you understand.
But that doesn’t mean it doesn’t hurt. And I’m sorry. But here’s the thing…you can’t feel hurt, because it’s not about you. But, of course, that’s not true. You CAN feel hurt, just don’t internalize it, and certainly don’t express it. Process it and understand that it doesn’t come from a point of maliciousness or callousness…but rather protectiveness.
Let me reiterate though….this is not a sentiment directed at an individual or individuals in my specific situation. This is just good advice and an explanation to those who may feel confused, and even hurt, at my behavior lately. Because this is a learning process…for me just as anyone else who may not get it.
And I’m fortunate…immeasurably fortunate, because I have not had a single person in my LEGION of supporters who has come to me with a spirit of negativity, judgement or admonishment. Not. One. No matter how I’ve felt about the gestures of support offered or given to me, I can say with absolute certainty that they were all from a foundation of positivity, and for that I am incredibly grateful.
So please, friends, understand that I express this in the most compassionate manner I can possibly offer….It’s Not About You.
And with that said, I offer you this work in progress, this expression of gratitude through the naming of supporters. Thank you.
(These are in no specific order and I wouldn’t bother looking for your name…if you do, and don’t find it, it’s because this is a work in progress and I’m still hunting down all the gestures of support. This is going to take awhile.)
Sarah Meyer Overpeck, Chris Overpeck, Katie White, Amanda Owens Solis, Kindra Hunckler, Jon Nolen, Amanda Shuman, David Agranoff, Lisa Daugherty, Alan Vedge, Brenna Macias, Syed Jaffery, T Garrett O’Sha, Stephen Mason, Brian Kremer, Tricia Mera, Mark Finney, Mark Bowder, Wes Trueblood, Heather Dane, Jonathan Auyer, Wendy Miller, Nekoma Burcham, Andrew Griswold, Colleen Osterhaus, Kate Grass, Ian Phillips, Martin Stacy, Kipp Normand, Stephen Hanes, Matthew Moody, Chromis Pasqueflower Bowerbird, Jennifer Kennedy Wyrick, Stephanie Griggz, Megan Jefferson, Mary Balmes, Lori Thompson, Jamie Farhner, Dan Farhner, Kirsch Bowker, Fredrik Winberg, Scot Sedley, Matt Shull, Toni Giacoletto Bohannon, Tatjana Rebelle, Chloe Vincent, Kristen Tribby Cook, L. Leona Frank, Alex Shoebridge, Jim Jennings, Rochelle Del Gunter, Mark Bowder, Sally Marchand Collins, Ivy Campbell, Scott Brunner, Ben Hudelson, Emma Faesi, Matt Robison, Kate Van Winkle, Joyce Holsten, Scott Holsten, Mary Mezey, Kevin Huff, Steve Baber, Missy Baber, Joshua Mason, Nekoma Burcham, Raymie Anderson, Martin Stacy, Louie Langley, Sara Biniecki, Debbie Hassid All, Alicia Ford, Jayson Meyer, Jasmine Rau, Jon Rau, Chris Fettig, Anna Lissa Abad Smith, Melissa Cass, Jennifer Roberts Jorgenson, Abbie Shapiro, Rebecca Zink, Kyndra Moeller, Erica Westhoff, Ron Day, Piotr Paciorek, Mary Rittenhouse, Robert Scheer, Tim Gatreau, Doug Marcum, Christopher Newgent, Scot Sedley, Carrie Jae, Jimmy Ryan, Nicole Campbell, Amanda Shuman, Matt Woodman,Cecilia Santos, Lara Brainer-Banker, Whitney Bevins Lazzara, Kristin DiSeveria, Christy Victor, Deanna DiSeveria, Blake Roberson, Lauren T. Rider, Steven Rider, Lisa Menninger, Brooke Merry, Keith Woods, Brittney Walker, Alison Nichole, Chris Beck, Molly Trueblood, Alan Vedge, Dylan Hammons, Rodolfo Palma, Cheryl Harnishfeger, Fred Iversen II, Terry Wilson, Koy DePompeo, Dustin Eagan, Michael Hofer, Chris Swisher, Jenny Swisher, Jesse Houser, Wendy Miller, Becky Boyle, Scott Breeden, Wes Trueblood, Terence Shackleford, Jacqueline Falzarano, Aaron Miller, Alain Bonacossa, Daniel Roth, Collin Moses, Bridget Flynn, Heather Howard, Brian Wyrick, Holly Sommers, Sara Pugh, Luis Vicente, Heather Lake, Carly Cooke, Kelly Shull, Rev. John Sowers, Laurie Guerrettaz, Hillary Keyes, Kelly Darden, Blake Roberson, Tito Downer, Leah Downer, Suzanna Gural, Skott Daltonic, Katharina Addas, Andria Baumgartner, Natasha Bivens, Ryan Scott Love, Lucas Maxwell McCabe, Matt Ebersole, Garry Howard, Patrick Roots Dugan, Chelsea Butler, Laura Minor, Luc Rodgers, Nicole Kemerer, Jeremy Atkins, Bill Watts, Jes Valentine, Jackie Dikos, Ryan Howard, Dan Ziegler, Jill Ziegler, Kat Lev, Errol Katz, Jen Bex, Kevin Harvey, Tania Hines Juillerat, Jonathan Juillerat, Marie Ursuy, Angela Bryant-Hofstetter, Chad Bauman, Travis Ryan, Katharina Dulckeit, Patrick Clauss, Matthew Yeager, Erin Sloan, Chris Ryan, Corrado Francolini, Melissa Palma, Oscar Sanchez-Huerta, Jonathan Nolte, Antonio Leiriao, Leslie Dolin, Steven Dolin, Elizabeth Sparrow, Kate Nolan, Michelle Craig, Jeff Melton, Colleen Douglass, Aaron Edge, Michelle Pemberton, Seph Hatley, Russ Goodman, James Meldrum, Piotr Paciorek, Steve Allen, Heidi Keller Phillips, Eliza Innes, Nick Keener, Nichole Ossim, Shawna Jeanne Thompson, Heather Dane, Amanda TJ Scott, Eric Bogan, BJ Davis, Marcey Cram, Jess Livinghouse, Carroll Bilbrey, Patti Jean, Denver Hutt, Sphie Holman, Linda Waddick, Daf Davies, Samuel Hartman, Ayden Jent, Wendy Wahine Clay, Mark Lafay, Jennifer Denton-Walker, Terry Fletcher, Duncan Alney, Louis Gregoire, Rob Williamson, Cindi Cohl Browning, Stephen Cummings, Brad Quartuccio, Jeff Guerrero, Becca Hopson, Lindsay Gilliam, Mary Ellen Wheeler, Josh Pollack, Jon Little, Kara Egan, Casey Atchley, Clark Giles, Laura Johnson, Mike Luce, Maggie Brown, Nichole Pichon, Stephanie Crumley, Jerry Lee Atwood, Joanna Potocki Wiggins, Holly Hilton, Sarah D. Munson, Tricia Mera, Rudy Nehrling, Jamie Price, Austin Reedy, Kipp Normand, Leslie Hulvershorn, Kathleen Finn, Jennifer Zbikowski, Joel Capolongo, Curtis Singh, Cris Iles-Wright,, Gerry Groothuis, Bret Bright, Bobby Burnam, Julia Von Ranson, Amory Abbott,, Zach Mitchell, John Stewart, Erica Westhoff, Annie Skinner, Keri Mordue VanVlymen, Sara Lunsford, Kyle Jeffrey Kranz, Tim O’Donnell, Genisis Dancer, Freja Pelich, Kurt Austin, Brett Randy Bunting, Alex Bond, Hayley Trussell, Reillo Dahl, Christopher Banul, Bradley Saul, Beth Weik, Thomas Chute, Annemarie Katz, Kathryn Goggin, Scott Torguson, Greg Swallow, Nicole Boals, Lisa Menninger, Jenne Horne, Emily Schwank, Stuff Erin Makes, Heidi Gluck