How to Live with a Terminal Illness
By Karen Najarian
You try to enjoy each day while dealing with the side effects of treatment.
You search the net for cures to the disease and the side effects of the treatment.
You connect with your Facebook drug group for answers your docs don’t have… and you find them.
You somehow deal with the unknown duration of temporarily successful treatment and that eventual unscheduled train wreck that you know is coming down the tracks when the drugs stop working.
You can’t stop thinking about the one (ONE) woman in the world who has been “cured” for five years now with a new treatment.
You hope you live long enough to benefit from a cure if they discover one.
You just smile when people say, “You can beat this.”
You grow your hair while you still can.
Be vigilant? Ignore it? Embrace it? Accept it? Share it? Keep it to yourself?
You’re grateful for the opportunities you’ve been given in the past and you’re proud that, in your life, you’ve reached for the ring.
It’s time to turn inward. The phase of crazy physical activity is over. It’s time to process what has been, enjoy the now, and create memories with your kids and grandkids that they will carry with them throughout their lives.
You hope you’ve made a difference. You want to still.
You hope you won’t be forgotten. You hope what people remember won’t be your craziness.
On this planet, spring follows winter. But for us humans, we get one spring. In terminal cancer, there’s enduring the treatment and keeping the disease at bay but there’s no healing from it or looking forward to returning to your old life. Even with all my willpower, I can’t train myself to hike Burma Road on Mt. Diablo with its 2700 feet of gain over four miles. I used to do it weekly with a twenty-pound pack. There are plans and goals that will never be fulfilled or attained, grandchildren you will not see graduate high school, let alone be married. You will be a great-grandmother to children you will never meet.
There are trails that won’t see your footprints again. And those you’ve hungered to trod that never will. I always hiked and experienced where I was, as if I may never be there again. Thank God.
I find I can’t plant for spring. Only nurture what I have. And dispose of the confining detritus of too much-accumulated stuff.
Clean house less. Toss more. Drive less. Amazon more. Shower less. Nap more. Hike less. Write more. More phone calls and visits with friends. Laugh more. Fewer thoughts about money. Clearing clutter. Making way for manifesting new creations.
Buy expensive jewelry, flowers, pet the dog, travel.
Embrace the splendid mystery that somehow we can manifest the “strings” of energy making up our physical bodies that see, hear, feel, hug, cry, taste, touch, and process our experience here on this tiny speck of a planet spinning in a sea of dark, empty death.
Aren’t we lucky?
PS. Even though I have an incurable, fatal illness my doc, who does have patients dying, impatiently says, “You’re not dying.” Refusing to fall into my despair, my friend, Val, bluntly reminds me when I’m feeling down that, “You’re not dying today.” It’s true that, while none of us has an expiration date, nobody gets off this bus alive. Humans don’t do well with uncertainty. Buddhists spend most of their time trying to accept impermanence. I deal with it by being open about it.
Copyright © Jan. 14, 2023 Karen Najarian
You are the most amazing woman I have ever met, and I am honored to be called your friend. I sit in awe at how you embrace every day, how you hold on to your memories and past experiences, and how you forge ahead to your future one day at a time. You hope to be remembered? I have three words for you… Half Dome Baby!
And now I am all choked up…I want to deny all this, Karen. I want you, and me, and all of my friends to be around forever. I spend so much time denying that I will ever be seriously ill, or die. I think about how I should be learning how to take care of our finances in case something happens to my husband who is older than I am. I SHOULD learn how to handle the reports/taxes/distributions/balancing statements, but put it off because nothing “bad” will ever happen to him and I have more immediate things to tend to. I’m fine, but at 81, I’m aware I am not as strong as I once was — can I get that strength and stamina back if I just exercise and hike more? As you suggest, it’s all scary and uncertain and I am so impressed by how you keep insisting on enjoying every moment that you have, and appreciating what you have had. The “tribe” that you so often speak of says a lot about the love that you continue to give and receive.
Thank you for this, Karen.
Karen – Have you done a family tree that those great grandchildren will see, appreciate the family history and say, I wish I’d known her.
I finally made time to read this post. In my car alone at Benicia State Park watching rain drops sprinkle my windshield.
Your message moved me to appreciate the quiet here. To relish this solitude.
Thank you 🙏