You Get to Decide: A Conversation with Myself

Written by guest contributor Kayla Funk

Five years post-cancer, my inbox continues to fill and refill with messages from strangers on the internet who want to talk about the c-word. Sometimes it’s about a supposed “miracle-cure” they’ve found, or a new experimental drug that’s making headlines. Other times it’s a question about my diet, or a photo of a famous person supporting St. Jude. But more often than news or inspiration, questions or advice, the type of message that I receive most frequently goes something like this:


Hey Kayla,

We just found out that my ____________ (friend/spouse/child/etc.) has cancer. We’re still kind of in shock and we don’t know a lot yet. Here’s the caringbridge/Facebook page/blog where you can read more about it.

Anyway, I followed you when you were sick and prayed for you every day. We are so scared, and I don’t know what to do or say. Do you have any advice on how I can support them best?

Thank you so much,

Anxious Loved One

I’m 26 now, and as frequently as I receive these messages, I unfortunately still don’t really have great answers for the sweet people who send them. I try my best to understand each specific situation, consider the context, and give my most thorough disclaimers about everyone’s experience being unique. But, in the end, all I can tell them is what made ME feel happy, what made ME feel loved, and what made ME feel supported. And what makes a person feel happy, loved, and supported can be different for everybody. In addition to that, I don’t even know that I can precisely say why the gestures or words that made me feel that way worked.


To be honest, most of the time, I have no clue what to say to strangers on the internet who want to support their sick loved ones. What I do know, however, is exactly what I would say to my 18-year-old self, newly diagnosed and treading water with a smile on, if I could time travel back to 2013 and take her out for dinner.


She would still be in shock, of course, completely incapable of processing the new reality she was living in. Her mind would either be moving at a glacial pace or with the force of an avalanche, and it might change minute by minute. But, somehow, she would crack a joke and offer to buy my meal, as if she had been the one to invite me out.


After complimenting her scarf, which she recently learned to wrap around her cute bald head like an absolute wizard, I would look her in the eyes, reach across the table to hold her freshly manicured hands, and say one very important sentence: “You get to decide.”


She might not believe me, or maybe she wouldn’t even know what I was talking about, but I would have to tell her anyway. I would have to let her know that she is strong, but she doesn’t have to be. She gets to decide when she wants to let others do the heavy lifting, and when she wants to be her own hero. She is smart, but she doesn’t have to be. She gets to decide when she wants to trust her medical team with her care 100%, and when she wants to be highly involved with her treatment plans. She is vulnerable, but she doesn’t have to be. She gets to decide when she wants to process her complex thoughts and feelings privately or with a therapist, and when she wants to trust others enough to share. She gets to decide.


That sweet, wide-eyed, terrified young woman didn’t quite know yet that she belonged to herself. In the span of just a few weeks, her body had been poked, prodded, opened, closed, bruised, stitched, and completely worn down. She had recently kissed privacy goodbye when a gaggle of med students filed into her hospital room to stare at her at 7 a.m. for the first time (a frequent occurrence, she quickly realized). She traded writing down her dreams in her journal for tracking her urine output on a giant whiteboard, and she had pretty much accepted that the ability to prioritize her personal needs and preferences would be indefinitely suspended until the cancer was gone… IF the cancer was ever finally gone.


You can imagine, then, why it was so hard for 18-year-old Kayla to realize that she got to decide. Every shred of evidence suggested her body belonged to cancer, not to herself, so of course she also struggled to set and respect boundaries surrounding her mind, her heart, and her time. She learned to fit into whatever mold the people around her asked her to.


Need me to be brave and inspirational? I’ll share my favorite song lyrics hand-lettered on a page in my journal before I head to the hospital for a bone marrow biopsy.

Need me to share my emotions to provide some perspective for your life? Here’s a detailed blog post about why I cried myself to sleep last night and a hopeful Bible verse that made me feel better.


Need me to remind you a little less of cancer and a little more of my old self? Let’s get together for the first time in a year and talk about everything in the world, except for the fact that I have a life-threatening illness. I can even wear a wig if that makes you more comfortable!


I’d reiterate my point to her again and again—meeting other people’s needs isn’t bad… But Kayla! You get to decide!


If sharing a picture of those song lyrics feels good to you, share the picture! But if you need to sleep thirty more minutes, skip the journaling session, and turn your phone off for the day, you get to decide. You do not owe anyone your inspiration. If publicly chronicling your saddest days and your hardest lessons is therapeutic for you, blog away! But if you want to reserve your grief and trauma for therapy or close relationships, you get to decide. You do not owe anyone your deepest emotions. If pretending cancer doesn’t exist and reliving high school memories for a night would relieve some stress, bust out the wig! But if you need to stay home and spend time with the people who are willing to clean your puke bucket—or spend time with yourself!—you get to decide. You do not owe anyone your cancer-free companionship.


Wow, I wish I could tell her all these things. I wish I could tell her she doesn’t need to be, say, or do anything in order to be worthy of love and support. She doesn’t need to hide the scary parts of cancer in order to make others feel comfortable around her. She doesn’t need to find something profound to say at every turn in order to be heard. She doesn’t need to prove how resilient she is in order to survive. She has the freedom to simply survive if that’s what she wants to do.


Of course, I cannot travel back to 2013 and take my 18-year-old self, newly diagnosed and treading water with a smile on, out to dinner. She didn’t hear these things from me, and if she heard them from someone else, she didn’t listen. She posted her favorite lyrics, blogged her ongoing heartache, covered her cute bald head with a scarf—and I am so incredibly proud of her. She was strong, and smart, and inspirational.


But I would’ve been just as proud of her if she had overslept for her doctor appointments, processed privately and faded from the public eye, tattooed “cancer” on her bare bald head, and refused to wear a wig no matter where she was going because they are just too itchy. I would celebrate her all the same if she’d never learned the names of the dozens of chemo drugs she received. I would still want to wrap my healthy arms around her little neck, even if she hadn’t gone on to start a nonprofit and advocate for others. There is no “right” way to have cancer, and while I’m proud of the way she did it, I am also sad that she didn’t know she had other options. Because there isn’t a “wrong” way to have cancer either.


So, dear friends (aka internet strangers), maybe I’ve figured out what my new answer will be when you message me online to ask how you can support your loved ones…

When you want to show your cancer-fighter how much you love and support them, you can remind them that they get to decide.


There are plenty of things that your cancer-fighter doesn’t get to decide right now. They don’t get to decide whether they have privacy, whether they want others to touch them, whether they want to divulge personal information to total strangers, whether they receive painful, sickening, or traumatizing treatments, or whether or not they have a debilitating illness. Make sure you’re giving them space to decide how they’re going to deal with it. And then, even more importantly, make sure they know that your love and support is not based on their decision.


Be ready for vulnerability, but don’t demand it. Be willing to have hard conversations, but don’t expect them. Be prepared to provide a joyful distraction, but don’t force “positivity” because you can’t handle cancer. Let. Them. Decide.


I may not be able to tell you exactly what your loved one needs from you right now, but I bet if you let them lead the way, you’ll find out.


Good luck loving and supporting your cancer-fighter, my friend. I believe in you.

Until there’s a cure,

Kayla



Kayla Funk is a survivor and a fierce advocate for childhood cancer research that will someday cure diseases like hers. She lives with her husband and two dogs in Tucson, Arizona, where she enjoys reading, spending time with friends, and breathing the fresh Arizona air!

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