On Air with Ella - podcast episode 288
HOW TO HELP WHEN A FRIEND IS HURTING
And what NOT to do...
The following comes to you from my friend, Christine Kaineg, who received a startling cancer diagnosis in August 2021. In this episode of On Air with Ella, Christine shares her experience and provides actionable ideas to help us navigate our response the next time we have a friend or loved one in crisis. In Christine's own words...
I am very fortunate to have received boundless love and support during my recent cancer diagnosis, treatment and recovery. However, until this experience, I didn't know how to be there for others. My first instinct was "first do no harm" - and that often manifested as "stay as far away as possible." Now I have seen love and support come from all over, and in many different ways.
I. The Diagnosis:
In August 2021, just after my 40th birthday, I finally took some time out of my busy life to go to the doctor. By December, I was diagnosed with an extremely aggressive form of cancer. Like everyone, I have a lot to live for, and I trusted my doctors to develop an aggressive plan to make sure there were no cells remaining, which included 10 weeks of daily radiation and 6 weeks of chemotherapy. We knew that the treatments would start off relatively easy, but get progressively difficult as the weeks went on and the effects of the chemo and radiation accumulated in my body.
Someone gave me great advice to tell as many people as possible as soon as possible, because there would come a time when you’re too sick to tell anyone what’s going on. I also gave others permission to share the news, which greatly eased the emotional burden of having to share the same difficult story over and over again.
My past experiences had shaped my response...
When my father died in 1997, I was 16 years old. None of my peers knew how to help me, and the way I responded was to isolate myself. Like many people, I wasn’t taught how to grieve in a healthy way.
I still hadn’t learned how to process grief by the time I was 31, and my 5-year-old niece died after contracting RSV. As others I knew and loved faced hardships, my first instinct was ‘first do no harm’ – and the best way I could do no harm was to stay as far away as possible.
We often don't know how to react.
As a society, we don’t always know how to process grief and hardships. Some of us are lucky to have been taught ways to grieve by our cultures and our ancestors, but many of us are taught to “buck up,” “get over it,” “onward and upward,” and “just think how lucky you are!”
This (toxic) positivity can make people feel guilty for needing to process traumatic events, and lead to isolation or develop unhealthy coping mechanisms. It’s very typical to see people dive into work or hobbies as a coping mechanism after a traumatic event instead of processing the fear, grief and sadness resulting from a trauma.
Traumatic events aren’t limited to death, illness, accidents, etc. but can include loss of a pet, life and career changes (even seemingly positive ones), pretty much any sudden situation that is disruptive to your life.
II. What I've Learned
I couldn’t have handled my own illness so successfully without my community - near and far. Here’s what I have learned:
What YOU can do to be there for someone:
There’s no “one size fits all” approach. The key is to know where you fit into the individual's life, and what gifts or talents you can offer.
Help within your comfort zone, but be present and consistent.
Consistency is a big part of meaningful support.
Co-Workers:
My co-workers had to pick up a lot of slack while I was sick. One thing that meant a lot to me was when they took on a task they’d say “this is just for now, just until you get better.”
When you’re sick, there’s a crisis of identity that occurs. My body and my medical team took over, and the feeling of worthlessness was overwhelming. I put a lot of myself in my work and in motherhood, and seeing people effortlessly take over my roles was very difficult for me.
Co-workers who are temporarily easing a burden need to walk a delicate line of confidence and competence, with reassuring your co-worker that it’s just temporary, and “no one can do it like you! I’m just easing your burden until you get back!”
Choose one point person that you can keep in touch with, and they can let everyone know how you’re doing. It makes it easier to keep one person informed, and they can spread the news on your behalf.
I had a co-worker who sent me a joke every single day over text message during my treatment. Even when I was scared, sitting in the waiting room for my radiation, a joke would pop up on my phone. There was a time when I was so sick, I couldn’t leave the second floor of our house, and still, a joke popped up. The consistency really meant the world to me - and jokes are great because you can share them with your caregivers and hospital staff to give everyone a laugh!
Personally, I loved getting flowers from a people who went in together.
Friends / Neighbors:
My neighborhood showed up for me and my family in full force. I will never forget their kindness and supportive presence during this journey.
One of my amazing neighbors organized a meal train - and we didn’t cook a meal for about three months!
One nice thing a few neighbors did was either text me their recipes or write them on an index card. I’ve kept all of them and even started my own recipe book of my very favorite ‘tried and true’ recipes that I can go to when someone needs some comfort food.
One of the most surprising and lovely gifts was my own hospital gown. When you go to radiation you have to put on a hospital gown each time. Sometimes they’re too big, sometimes they’re too small, sometimes the tie closures are missing - and you have to sit in it in a busy waiting room until you’re called back. Having my own, surprisingly flattering, gown to change into each day was wonderful. People would stop me and ask me about it - it was nice to tell them that my very dear neighbors got it for me as a gift.
Another neighbor kindly remembered which days were my chemo days, and the day before she would leave a beautiful card with a little gift. One day it was flowers, one day it was a tea towel, once it was some crystals. It was very thoughtful and it meant a lot to me - especially since my anxiety tended to rise the day before chemo.
I was very happy and grateful that people remembered my daughter and husband.
One wonderful neighbor left a pack of craft supplies that my daughter and I (or another caregiver) could do with her.
One friend and coworker picked her up one day and spent the day with her - that gave us all a much needed break and she had a wonderful time.
Coloring books and stuffed animals mean so much to kids, and help them know that they’re loved and supported, too.
It helped that so many people asked my husband how HE was doing, along with asking me. I was getting a lot of love and attention during this time, and simply asking him about his well-being meant a lot.
About ¾ of the way through my treatment plan, when I was very sick and weak, I looked outside one day and about 20 neighbors had painted canvas signs, screwed them to stakes and put them on my front yard, facing the door. They said “we love you,” “hope lives here” and “we are with you,” with paintings of cats, or Alaska (my home state) and lots of wonderful messages. I still can’t think of it without tearing up. But it meant the world to me.
Far Away Friends:
I have many dear friends who live far away from me, who still managed to provide love as support - as if they were right next to me.
Some of them worked with a dear friend who lives in our neighborhood to get on the Monday meal train, and sent dinner via door dash, or ordered delivery from local restaurants.
Some friends sent cards, letters or flowers.
Some friends sent care packages with cozy blankets, books of poetry, cozy socks and gifts or activities for my daughter. All of it was very much appreciated.
Nostalgic gifts are also fun. One of my best friends sent me a stack of Teen Magazines from 1999 and 2000. They were so much fun to read during my chemo days, and gave the nurses a few laughs, too.
Simply saying “I’m praying for you” or “I’m thinking of you” goes a very long way.
Family/Friends who are like Family:
My family was incredible. My mom, sister and brother each came to help us when I had surgery, and again when I started treatment. Tips:
Don’t expect your family members to be everything to everyone. My mom is an incredible nurse, and a great house guest - but that doesn’t mean she’s also an amazing babysitter. Accept people's strengths and limitations.
People may not move or act as quickly as you would like, or fold napkins the exact way you do, this is a lesson in empathy, gratitude and letting go.
My sister came two weeks into my treatment, and she immediately insisted on coming with me to my chemo treatments. I have never spent 6 hours in a tiny room with someone, and on chemo days I also had my regular radiation treatment and several doctors appointments - so it was a very, very long day. I was worried she’d be bored, and I’d already established a little routine, so I was hesitant to have her come. But she insisted, and it turned out to be so much fun! We talked and laughed and listened to music for 6 hours straight - the time just flew by.
When my brother came two weeks later, he asked me if I wanted him to come with me, and I this time, I immediately said YES! I treasured the time I spent with him (and my mom and sister) driving back and forth to the hospital, in the chemo room, in the radiation waiting room, and it was nice to have someone else listen to what the doctors had to say.
Our lives are so busy, it’s impossible to carve out ‘white space’ just to be together with your family members. White space is the time when nothing is scheduled, where you can have meaningful conversations, talk about hopes, dreams and the future. Before this experience, I always lived by the adage “he who travels fastest, travels alone” - that may still be true, but it’s a lot less fun.
III. What Not to Do
Some things that might do more harm than good:
Refrain from offering medical advice, or forwarding articles on alternative treatments. Choosing a treatment plan with medical professionals is hard enough without well meaning friends second-guessing your choices.
No need to share stories about mis-diagnosises, horrible treatment outcomes or other disturbing stories. Cancer treatments are constantly evolving and getting better all the time - cancer treatments in 1992 or 2002 are completely different in 2022.
All cancer and all treatment plans are different. There's no need to compare notes.
Try not to comment on someone's appearance, or compare them to other cancer patients (in real life or on television) - everyone is different. Because of the type of chemotherapy I had, I didn’t lose all of my hair (just a lot of it), and I got so many comments about my hair - how I didn’t ‘look’ like a cancer patient because I had hair, and would I lose my hair eventually? Was I going to shave my hair off? Was I going to get a wig? Meanwhile, my hair was coming out by the handful in the shower and on my pillow and it was very distressing.
Food For Thought...
Just because someone is sad, or scared, or tired of fighting doesn’t mean they aren’t hopeful and it doesn't mean they’re not grateful. Life isn’t beautiful OR terrible - it’s kind of both sometimes. In those moments, just be there for them. You don’t need to make them laugh or “look on the bright side” - just be there and make sure they feel seen, heard and loved.
Let your friend decide how they want their trauma to define them (or not.) I’m still processing how my cancer journey affected my life, and how much it will influence my life moving forward.
If people can’t be there for YOU in the way you expect, just let your expectations go. Two out of three people are affected by cancer in their lifetime, and it’s scary. Your diagnosis may bring up lots of emotions or their own past trauma. Save space for them, and they’ll show up for you when they’re ready.
If you weren’t there for someone during a time when you thought you should have done more - let it go. If you can, reach out today and tell them you love them, but don’t carry guilt around with you. It’s the heaviest burden there is. If they’re gone, give FOR them - do something wonderful for someone the next time you can. Do it with your loved one in your heart.
IV. I Bought a Bell:
At the end of my cancer treatment, my family and I gathered with all of my caregivers at the Schar Cancer Institute. I got to ring a very big bell. I liked it so much that I bought an even BIGGER bell for my neighborhood. There’s a celebration and finality that comes when you ring a bell. It feels really good, and we need to ring MORE bells when we accomplish big and small milestones.
This bell is for EVERYONE who accomplished something that they want to celebrate. EVERYONE who has been courageous enough to follow their dreams. EVERYONE who persevered. EVERYONE who has a WIN - big or small.
ABOUT CHRISTINE KAINEG
Christine's professional background is in corporate governance and federal contracting. She was born and raised in Anchorage, Alaska and is Tlingit Indian. She currently serves on the Board of Directors of her Alaska Native Corporation, Koniag, Inc. serving the Alaska Native people of the Kodiak Archipelago. She was diagnosed with a rare form of endocervical adenocarcinoma in August 2021, and after an aggressive treatment of radiation and chemotherapy, is now cancer free. She lives in Alexandria, Virginia with her husband, Rob, and six-year-old daughter Zelda.
Enjoy this personal essay by Christine. If you want to connect with her, you can find her on LinkedIn!
A short & true story by Christine Kaineg
After my treatment was over, and I got the all clear from my doctors, I decided to take my daughter and husband to Alaska for about two months. We spent most of our time in my hometown of Anchorage, with a week in my ancestral homeland of Kodiak Island, a large island off the southern coast of the state of Alaska. To me, it’s the most beautiful place in the world.
One day we drove about 40 minutes to the end of Pasagshak Road, to a place called Fossil Beach. It’s a beautiful beach, surrounded by steep rocky cliffs and there’s a rocky outcropping, perfect for tide pooling. We brought rubber boots and a bucket, and we were looking for sea glass, shells and interesting rocks. There’s no end of fascinating finds in a tide pool.
I began carefully walking out to the edge of the tide pool and the Pacific Ocean, searching for things to add to our bucket. It’s a treacherous walk, with slippery seaweed, sharp clusters of periwinkle shells and mussels - so you have to be very careful and very focused. I suddenly looked up, and realized I was very far from my husband and daughter.
I was looking out at the vast ocean, when I noticed two large, inky black eyes staring at me - it was a gray harbor seal, bobbing up and down with the waves. We locked eyes for a few seconds, when I turned to shout to my husband and daughter - but they were too far away to understand me. When I looked back to the seal, I noticed there was more than one - about five all together, just staring at me while they were gently bobbing with the waves.
I stopped and looked at them for a while. I thought about my life, and everything that led me to that moment on the edge of the Pacific Ocean. I thought about the slippery, rocky tide pool, full of crabs, octopus and jellyfish, that separated me from my family. It was such a profound metaphor for what I had just been through. I had been on a treacherous journey, one where they couldn’t come with me - it was too dangerous.
I had to go alone, and I’d seen and experienced things I couldn’t explain. But I made it and I have a vast, magnificent and wonderful life ahead of me.
I don’t know if those seals were my spirit guides, my ancestors, or simply a group of seals fishing - but I think of that moment often as I process everything I’ve been through, and it gives me peace in its quiet, perfect, simple stillness.
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