Posted 3/5/13 on TEDMED
Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligible survival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.
Of all things, the simple act of truth has become most important to my husband and me. We talk about my dying. It is a poignant, painful and sometimes funny honesty. We have done it after solemn consults with physicians, during long hospital stays, through gut-wrenching disappointments, and sometimes over toast and coffee on Sunday mornings.
We have learned to be forthright and unafraid of saying it out loud. We deal with small moments – planning vacations, making purchases, visiting family, entertaining old friends – in a sober and reflective way. Routine plans – Christmas with the family; the vacation cottage; an annual trip – become critical decisions. We discipline ourselves to push aside the things that are trivial. It becomes easy to ignore the cracks in the driveway and the clutter in the closet.
And we occasionally treat it with laughter although, perhaps to the horror of some, it is gallows humor. We joke that when I am gone, the piano, the house, the cars will all be his. We laugh and mimic Homer Simpson, believing he is doomed, reading a pamphlet headlined, “So You’re Going To Die.” It reminds us that we are in a real world where playfulness is a part of life.
There is no bucket list. There are no plans to see the great pyramids, kiss the Blarney Stone, or throw a party in Times Square. We look to the small things we have known for decades that have become precious to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice cream, holding hands as we go to sleep at night.
Details – advanced directives, the will, the attorney, the broker – are easy. These will help put affairs in order but they do not address relationships with the world and the people who inhabit it.
The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.
But most of all, the truths we come to know lie in the depth and clarity of our bonds. For me, this is reflected in the conversations with my husband, the beloved person in my world. I want him to go on with life; to find someone to share it with; to help the children as they struggle with the loss; to remember the laughter and how much we loved each other. That is all I have left to give him. And for that I extract a bittersweet promise that he will make me laugh until the end, that we will hold hands every night, that we will share the ice cream, that we will always talk about what is happening, and that I will die with him beside me.
It is the dignity, the finality, and the truth at the end of life.
Elaine Waples is retired and lives in Atlantic Beach, FL.
16 thoughts on “Truth at the End of Life”
I can only say I know you from afar, through Brian. But his dignity, honesty and candor about the honesty of the inevitable speaks volumes about what you and he share. There is a lesson well-taught in what you’ve written. Value life, savor it, look back with joy at the tracks you’ve left in the sand, and the difference you have made in other lives, and recognize that days were gifts you were given and gifts you gave.
Thank you Elaine for sharing and inspiring to hold each moment as a gift. Kay
Thank you for sharing this. It was simultaneously profoundly moving and warmly inspiring. Your sober, lucid, cogent perspective conveys sincere courage and conviction. It is apparent you’ve achieved a point of gracious acceptance few of us have had the honor and privilege to experience in this life. It is my hope you will continue this journal, for the sake of your readers. Thank you for having the willingness to bring it to light…to allow us to share it clearly and honestly…and to help us all grow in our acceptance of life’s immutable laws. We are in your debt.
With Warmth and Gratitude,
Thank you for sharing your deep insights. You have a gift for articulating what is important in our lives. Your words touched me and I wanted you to know. I also feel as if I know you through Brian. You two are blessed to have each other. Blessings to you, Brian, and your family.
Elaine, I join the others in thanking you for sharing your thoughts and your wishes with us. You have helped many remember that the most important things we can give our spouse, our family and our friends are the little things…thank you and I wish you, Brian and your families peace.
Just so beautiful. Being human is such a joyful conflict of ideas and the reality of our biology. Thank you, thank you, thank you.
Thanks for your courage in sharing a very intimate look at your life.
This was a lovely piece Elaine. I do hope that you have more time than you believe that you will, and that every minute is as you wish it to be.
Courage, Love, Life, Family, Truth, Wisdom, Reality, Friendship, and, of course, Ice Cream … are all succinctly shared and passed on through this insightful and brave message. Thank you Elaine and Brian. You are BOTH special. Peace and prayers, Jim Nathan
Elaine . I don’t even know you but I’ve. Known and loved Brian for about 45 years . I am watching my wonderful father lose all dignity with dementia, paranoia, hallucinations, fear of everything but especially fear of dying. Every minute if every day is spent worrying about something or going to an endless stream of doctors who can do nothing for him except take his Medicare payment, prescribe more medicine, and make follow up appointments for no real reason and stop living in anticipation of death. The sadness of losing a loved one is profound but it sounds like you have all the bases covered and your family will be supported by each other . And you are right on about humor . My mom told my sister today that she is going to let my dad start driving again but only within a four block radius of their house. There is not one thing of interest within four blocks of their house except other houses and the reality is she is tired of driving him everywhere every day to useless medical appointments and so forth. My sister had a great response to the four block radius scenario. She said well at least when you kill someone it may be someone you know. As far as your kids I have two handsome available sons ages 29 and 25 if you have daughters. Kind regards and love to you all
We’ve never met yet we share a very special friend, Jimmy Parrish.
It appears we also share a mutual respect for life and for love and for a meaningful and memorable existence. I wanted you to know your eloquence and elegance is inspirational to me. I have been deeply touched by your words.
After 15+ years of an amazingly wonderful and God honoring marriage, seven years ago my wife and I were also hit by a life changing illness. Our struggle has been different than yours… yet it too has nearly destroyed something once so beautiful. Reading your words today reminded me of many of our cherished and important life events. Why is it life seems to shine brightest, when darkness falls?
Your words have motivated me to fix something which is still fixable. Your words have reminded me how much I still long for and desire those many sweet experiences. Your words have helped me once again realize there is no better place for me, than in the arms of my best friend.
Elaine, I know of no greater compliment than to let you know your life has mattered to me. Unknowingly, you have altered the path of someone for whom you will never meet. And I felt it important that you know I have saved a copy of your story and it will forever be a part of my life.
Thank you. Thank you for sharing your very real and meaningful story. My prayer for you and all you leave behind is that the pain now, is part of the happiness then…
May God be with you always.
Along with the others who have acknowledged your beautiful words, I want to thank you for sharing your personal, and heart-felt, story.
I spent my wife’s 9-year battle with breast cancer as her primary caregiver. Though it full of ups-and-downs, I would never change the time I was able to spend laughing with her during those years.
Your story is a healthy reminder that the little things in life are what matter the most and for that, I thank you.
John J. Garnand @ johngarnand.wordpress.com
I am truly touched by your story. My first wife died of cancer 15 years ago and I was her caregiver for the eight years that she suffered with cancer. Regardless of her cancer, we enjoyed a wonderful life during that time. We spent quality time with our family and friends and downhill skied up until the last 12 months when her cancer became inoperable. She never complained about her illness and maintained a happy outlook. When people asked her how she was always happy, knowing that life was ending, she would reply “I can choose to be happy or sad and I choose to be happy!” She also asked that I should remarry which I rejected any such thought. However, after three years, I did remarry and have found true happiness. But I will never forget the lesson she taught me about life.
I wish the very best for you and your family,
Jack White, Bozeman, Montana.
Thank you Elaine. There are tears on my computer screen you can not see.
Hello Elaine..You truly brought tears to my eyes.. You see I have a 46 yr old son who has incurable brain cancer, and is now being treated with palliative care. I love my son as any mother should, and how hard it is as a mother not to be able to put a “band’aid” on his disease or kiss it as one would do when as a child he scraped a knee. He has a wife, 2 small children, and brothers and sisters, and it is so hard for all of us. As much as I don’t want to lose him, I don’t want him to suffer. Thank you for telling your story and helping me to “seize the day” and be thankful for the time he has left.