Before I retired in 2000, I worked in a state agency as a peer counselor, or more formally, an employee assistance program (EAP) coordinator. The “coordinator” part was there because my job description wasn’t actually to do counseling; it was to assess the problem and refer the client for help.
But of course both of those processes involved counseling. We just couldn’t call it that.
In 1986, shortly after I’d begun the job, I was separately visited by two employees with HIV/AIDS. Treatments such as the antiviral drugs used so successfully today were nearly a decade away, and a diagnosis of HIV meant almost certain death. These clients were understandably upset and frightened, but they each made it clear to me that they were still feeling pretty good, though with ups and downs.
What they’d come for was to discuss what they wanted to do with their lives, now that there was something of a time limit. The question of whether/when to stop working loomed large. They were concerned about how leaving would affect their health insurance, whether they could live on their disability income and so on. They also felt undecided about whether they’d be better off using their remaining time doing things they’d always wished to do, such as cabaret singing, or whether they’d feel better and less anxious sticking to a more normal routine.
I vividly remember my private reaction. It was certainly politically incorrect and not at all EAP-like. I was thinking: How can you fool yourselves like this? What’s the point of planning your life when you’ve got a terminal illness? Do you really think you can feel normal and truly happy ever again?
In participating in this process, I felt hypocritical: my EAP training was all about helping people to face reality, and although I felt glad to be helping these clients with major life choices, I never completely lost the feeling that they were running away from the truth, and that I was colluding with them.
Looking back, I don’t know exactly what I thought they should be doing! Did I think they should just go home, get into bed, assume a fetal position and wait? I suppose I thought that’s exactly what I would do.
But in two years, I myself was diagnosed with leukemia. Immediately following the news, I did wish I could put a pillow over my head and shut it all out, but I couldn’t; the fear and sadness were too strong to run away from, and actually that’s never been my style.
One of the hardest moments for me came a couple of days after I’d found out. I was returning to work after a lunch date with a cousin who worked nearby, and as I approached the door to the agency building, I suddenly realized that this “thing” was going to follow me in–that I couldn’t leave it behind just by going through that door, the way I’d often done with events in my personal life.
A few days later, in an EAP room that was isolated for client privacy, I let out many spontaneous screams of fear. Amazingly, I felt much better afterwards. So much so that later that night I wrote out a list of advantages and disadvantages of having a terminal illness, as follows:
1. I can weed out stuff from my life that’s not important–pare down to basics.
2. Already, expressing deep feelings is easier, especially feelings of love.
3. I don’t have to sweat “time stuff,” like frequent-flyer mileage.
4. Money won’t have to last as long, so there’s more for now.
5. I won’t have to watch myself grow old, a substantial fear of mine.
6. I may learn to ask people for help.
7. I may get to feel really brave at times, a feeling I’ve rarely experienced.
8. I may not have to go the dentist ever again.
9. I won’t have to suffer the loss of too many friends/family members.
10. I know what I’m going to die from and approximately when.
11. I can retire and do things I’ve postponed, like studying piano.
12. No worries about not having something interesting to talk about!
1. I won’t be around for the people I love.
2. I’ll miss out on the experiences, good and bad, that I’d share by seeing life through with them all the way to the end.
Since the night I prepared that list, some of the advantages have faded. I still go to the dentist every four months and floss at night, and while I did enjoy a period of spending money more freely, thinking that I would die within five years as predicted, I have come to realize that I may continue to live a good while longer and have had to rein in my spending. I have studied piano and play it every day, and I now also write poetry. But those things are not just a breeze. Life is work, and I suspect that it will be, right to the end.
Life is a terminal illness, and we all are living with the knowledge of our certain deaths. Yet we get up in the morning and make breakfast as if there’s no tomorrow. Are we all in denial? In a way, yes.
But is that a bad thing?
I don’t think so. I think it’s the nature of things that are alive to be alive. All species appear to have an instinctive knowledge of death; we see it in their daily fight for survival. But it doesn’t stop living things from fully experiencing the joys and pains of being alive. Finding out you’re going to die a little or a lot sooner than you thought doesn’t change that. The clinical process of “dying” is really quite brief, and until we enter into that process, we’re living, not dying.
I’m just a person with a health problem that needs treatment. Eventually it may be the thing I die from, but for now I still have to brush my teeth and try not to forget anyone’s birthday.
I still stop and smell every flower I can. But sometimes if I’m late for a piano lesson, I don’t stop.
About the author:
Ellen Diamond was with the New York State Department of Labor for more than thirty years, earning an MA in counseling and later an MSW. Early in 1998, she was diagnosed with chronic lymphocytic leukemia (CLL), and in 2000 she retired to pursue her interests in music and writing. In 2004, her leukemia went into remission following treatment, and it has remained so to the present. Ellen volunteers as a reading tutor at an East Harlem elementary school. She also studies poetry at the 92nd Street Y in Manhattan, and within the month, a small chapbook of her poems will be in circulation.
8 thoughts on “The Pros and Cons of Living with a Terminal Illness”
Yes, you did “put it all into a different perspective,” and I agree with Wendy Malone also, that you have a true gift.
Hope I get to read a book of yours once of these days–?
With thanks and Happy Thanksgiving…………….
I don’t ever think I’ve been so touched by a sentence…”Life is a terminal illness and we are all living with the knowledge of our certain deaths.” It’s like you just put it all in a different perspective for me. Ellen, you have a true gift, and I wish the very best for you.
Ellen’s piece is so beautifully written. A pleasure to read and a lot to think about for all of us. I have had the privilege of reading Ellen’s poems. They are stunning, as will be her chapbook!
What a beautiful post. Life is a terminal illness. So true. A friend of mine has/had the same type of cancer as you and , despite doonsday predictions from an oncologist whose practice she left, she’s still alive and in remission far beyond the date he gave her. We all need to find our joy. While we were waiting for my father to die of the lung cancer he would NOT beat, a much younger aunt who’d come to say goodbye to him died suddenly of a heart attack. Who knows when our time is up? Keep flossing!
What a beautiful reminder about living life and not collapsing in dread of what’s ahead! I loved it. All best wines to Diane G.–
This essay reminds us of what is important in life and how foolishly we sometimes squander our time and our emotional energy.
The lists are great–and I love that line “for now I still have to brush my teeth and try not to forget anyone’s birthday.” There is something both honest and deeply convincing about the shift from that first reaction to HIV/AIDs clients, to screaming in an isolated room, to yes, brushing teeth. Each reaction is vivid and convincing in its place, and I’m left with a clearer sense of how to relate to friends living with such a diagnosis–which is, I suppose, to remember birthdays and not to obsess about the rest. Such writing is a gift, and I am grateful.
A brave, humorous, human story from someone who knows how to live.