What Not to Say to Someone with a Terminal Illness (Or Someone Who is Grieving)

 

By Liz Leedle

 

Liz Leedle is the author of Scream: The Dark and Humorous Lessons from a Cancer Warrior. This article is excerpted and adapted from Scream. Liz spent the first part of her professional career as a sales manager in telecommunications and the second half of her career as a fitness trainer and professor of exercise science at Nashville State Community College. Liz now spends her time doing all of the things she is inspiring you to do as a cancer warrior.

[Editor’s Note: Relationships with family and friends are foundational to the Blue Zones life, but difficult situations can leave us wondering how to be supportive. Although we should all know not to say “everything happens for a reason,” it’s common to struggle to find something meaningful to say. As Liz teaches us, the best course may not be saying something wise, but instead making sure your loved ones aren’t spending all their remaining days (and time they have left) discussing their diagnosis. Because a terminal diagnosis should not terminate living. We are all, as mortal creatures, living with a fatal condition.]

How are you?

How am I? Well, how the hell are you? I’m so tired of this question when it’s referring to me being sick. Do I look sick? Do I have the letter C written on my forehead? Am I being a complainer? Shut the F up and just be yourself with me. I’ll let you know when I need sympathy. I promise I will be the first to speak up for help. And you better let them know you need help.

I have my breakdown moments, honestly I do. The tears flow like Niagara Falls – mostly with [my husband] Ben. He knows to hug me fiercely and maybe cry with me. It is important to let it out. To me, holding back tears is like holding your breath. The longer you hold your breath, the more you can’t breathe until you are blue in the face or faint. I don’t look good with a blue face, so I’ll cry. Let those damn tears and frustrations flow like a river but only for a short time. Maybe not share this with the person that always asks “how are you” unless you want awkward stares and/or unwanted advice.

My mother, bless her soul, was a constant complainer about her health. I would try to warn everyone that called her or visited her, do not ask “how are you” because you would listen for the next hour to every ailment that is humanly possible both real and imagined. It never failed that Ben would forget and I would be laughing on the sofa as he tried to move this conversation to another topic. You probably know someone like this too. Funny thing, my mother will outlive us all.

When people know your diagnosis, they do treat you differently and I guess some people like that attention, I don’t. I want to be treated like a human, not a cancer victim. Cancer wins when you give in, cancer wins when it consumes how you are. Kick it to the curb. My Utah friends never ask me this question because I chose to only reveal my cancer to a few friends out there and explained that I was as healthy as them in so many ways, and I wanted to be treated like a non-sick person. They may text me and ask how is Nashville treating you and tell me that they miss me, but they never ask “how are you?” Smile.

I want to be treated like a human, not a cancer victim. —Liz Leedle, author of Scream: The Dark and Humorous Lessons from a Cancer Warrior Click To Tweet

Again, I do have my days where I want to curl up and cry, but I grab that red cape because there are no tear stains on that, I get up, and my mind tells me to get up and go because this journey is not over. I have way too many reasons to live. How am I? I am fucking great.

He/She is Better Off

Oh she is better off now that she has died. Really! How the hell do you know? Don’t look at me when I die and say this as you will promptly be removed from my exceptionally fun memorial service (planned by me). I’m thinking everyone will be so upset that I may get cheated and I figure you have only a few “you” times: your birth, when you find your soulmate, your child’s birth, and your death or passing as I really believe in Heaven. When it’s my time that will be between God and me.

Being from the South, I don’t think I’ve ever been to a funeral that I didn’t hear these words “he/she is better off.” Two deaths that affected me the most in my life were my Dad and my brother, Michael (more commonly referred to as Mike). Both were sick when they died. My Dad had smoked for so long (never around us) and drank for so long (never saw him drink but saw him lit every time). He finally quit it all but became so mean and short with everyone that I wanted to slip him a bottle of vodka. Too bad then I didn’t know about pot gummies.

For almost 10 years he lived on oxygen and it was so sad to watch. In his final days, the oxygen literally left his body. At his funeral, he had lost so much weight that his glasses made him look like Mr. McGoo. In case you are not from the South, the casket is left open for everyone to walk by and say, “He/She is better off .” My dad’s was the first and only dead body I touched. I realized he wasn’t even there at the moment. I looked up knowing that he was smiling as I was uneasy looking at those giant glasses on his face. I smiled back.

My children were very young and totally freaking out over seeing their Poppy dead. I didn’t quite realize the trauma, the nightmares, and the questions. Especially the one on why Poppy was better off.

Funny story here, Ben and my ex rode from Nashville together to the funeral. Being that my mom always loved my ex more than me, he was not only invited to my dad’s service, but he was a pallbearer.

I can’t imagine the stories in that car but when you have confidence, you just shake it off. We are all still friends.

What I realized at his funeral was how everyone came together, like 9/11, and how everyone laughed and told their stories about my Dad. It was his day but one of my saddest days. He always, always listened to my stories, he listened to my made-up songs on my tiny organ/piano, even when he was lit.

The death that affected me the most, however, was my brother, Mike, the one who died of cancer. I remember when his cancer metastasized to his bones. His wife called my sister and me to come with them to Florida as it could be his last trip. He would probably die really soon. At the time, my cancer was having a happy dance in my body which I was unaware of. My sister and her husband (my real brother to me), rushed to Florida trying to find a place at the last minute. I remember being scared for him to go in the ocean, walk very far or even ride a bike, thinking it would be his last day that day.

Fast forward, five years later, Ben was driving 100 mph to get me to the hospital to say my last goodbye to my brother. He had already lost his voice. I cried the entire five hours. It was the middle of COVID and luckily he was at a little Catholic hospital close to his lake house. That hospital wasn’t a COVID hotspot as they were sending these patients to another hospital, but all around Georgia was COVID. Vaccines weren’t yet available. They were kind enough to allow us into his room—all 15 of us. Did I say we come from a huge family? My mom was one of 12 siblings and my dad one of 9 siblings. I had so many first cousins on both sides I never knew loneliness. I might add here when I looked around the room only a few of those people had on the required masks. It’s a small town filled with stubborn “they don’t tell us what to do” people.

Having Stage IV cancer, I was initially scared, but Mike was more important at that moment. When I saw him, my world stopped. My first thought was to tell him why he was so important in my life. We literally talked every day, sometimes about cancer, and sometimes just about life. I would just listen to him go on a tirade about politics, a family member, or the fact that my daughter lived in California which made him crazy. At his death bed, he squeezed my hand so I knew he was listening. I saw the tears in his eyes, and he saw mine. I hated I couldn’t hear his voice. I still sit today, close my eyes and listen for his voice. Tears come first every time but then a big smile.

You Have __ Years Left!

After talking to him, I backed away for others but as I looked around that room, I knew my brother would not be happy that everyone was staring at him just waiting for him to die. I left. I was so angry at his doctor for giving him a statistic of five years. Even now, I can’t let my mind go there because I’m close to four years with my metastasis and I still hear those words. Don’t let anyone ever give you this type of statistic as it will mess with your mind. The mind-body connection is very real.

Mike had decided to be cremated on his deathbed, which didn’t surprise me because we both felt and feel the same about open caskets. I realized that Southerners find closure in seeing the dead body. I’m not sure why except maybe just seeing a dead body makes death real. That’s another saying from Southerners, “I need closure” referring to open caskets. He hung on for days and he was in great pain. He lost his sight and I left before his last breath. This was my big brother, the one who was my rock when my parents were fighting, the one who made me laugh at dinner, the one who told me the real deal about Santa, the one who bailed me out when I got in real trouble (not telling my parents), and the one who shared my cancer diagnosis. We were connected and now, this connection was stolen away because of cancer. If I could kick cancer right now I would. Cancer fucking sucks!

When I first got the call in Nashville, I screamed. He had fought so hard, I was hoping for a miracle. I screamed thinking of my own cancer, thinking if I get sick, I want my nurse friend Nadine to bring that bottle of wine and overdose me on something quick.

I realized that people say these words, he/she is better off, because maybe they feel better off. No more care takers, no more worries, no more pain for them watching their loved one in their cancer journey. Their loss comes later. Okay, I get that, but don’t you come to my memorial and say these words.

There will be no regrets either. What? No, no regrets – forgive now, love now, read more, travel more, move more, say you’re sorry more, learn to say no to those energy suckers and get rid of those people that tell you when you will die. Regrets make us focus on stress, and as humans with a cancer diagnosis, we must focus on the glory of each morning, the blessings we have now, the gratefulness of life now, the joy of the quiet mind and listening to nature’s sounds.

No, no regrets - forgive now, love now, read more, travel more, move more, say you’re sorry more, learn to say no to those energy suckers and get rid of those people that tell you when you will die. —Liz Leedle, author of Scream Click To Tweet

This is our life now. This is your life now. Live in the now. This you will not regret.

This is our life now. This is your life now. Live in the now. This you will not regret. —Liz Leedle, author of Scream: The Dark and Humorous Lessons from a Cancer Warrior Click To Tweet

I will be at the pearly gates with my red cape looking for my Dad and brother – and only then will I drop my cape for good.


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