Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Life is a terminal illness

Ellen Diamond
Patient
May 23, 2014
Share
Tweet
Share

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:

Advantages:

  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!

Disadvantages:

  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.

Amazingly, the only other disadvantage I could think of was my fear that, when faced with real sickness at a later stage, I’d give in to despair and so waste the precious time I had left. Still, these three disadvantages were significant enough that, weighed against the advantages, they would pretty much even up the balance.

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.

ADVERTISEMENT

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.

Ellen Diamond is a retired social worker.  This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

Prev

What distinguishes a sincere apology from the rest?

May 23, 2014 Kevin 3
…
Next

How many patients can a primary care physician care for?

May 23, 2014 Kevin 1
…

Tagged as: Oncology/Hematology

Post navigation

< Previous Post
What distinguishes a sincere apology from the rest?
Next Post >
How many patients can a primary care physician care for?

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

More by Ellen Diamond

  • a desk with keyboard and ipad with the kevinmd logo

    Living with an illness for which there is no cure

    Ellen Diamond
  • a desk with keyboard and ipad with the kevinmd logo

    I do not require perfect health to be happy

    Ellen Diamond

More in Patient

  • AI’s role in streamlining colorectal cancer screening [PODCAST]

    The Podcast by KevinMD
  • There’s no one to drive your patient home

    Denise Reich
  • Dying is a selfish business

    Nancie Wiseman Attwater
  • A story of a good death

    Carol Ewig
  • We are warriors: doctors and patients

    Michele Luckenbaugh
  • Patient care is not a spectator sport

    Jim Sholler
  • Most Popular

  • Past Week

    • Why removing fluoride from water is a public health disaster

      Steven J. Katz, DDS | Conditions
    • When did we start treating our lives like trauma?

      Maureen Gibbons, MD | Physician
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Graduating from medical school without family: a story of strength and survival

      Anonymous | Education
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
    • My journey from misdiagnosis to living fully with APBD

      Jeff Cooper | Conditions
    • Addressing the physician shortage: How AI can help, not replace

      Amelia Mercado | Tech
    • Why does rifaximin cost 95 percent more in the U.S. than in Asia?

      Jai Kumar, MD, Brian Nohomovich, DO, PhD and Leonid Shamban, DO | Meds
  • Recent Posts

    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Adriana Smith’s story: a medical tragedy under heartbeat laws

      Nicole M. King, MD | Physician
    • What if medicine had an exit interview?

      Lynn McComas, DNP, ANP-C | Conditions
    • Why U.S. health care pricing is so confusing—and how to fix it

      Ashish Mandavia, MD | Physician
    • From survival to sovereignty: What 35 years in the ER taught me about identity, mortality, and redemption

      Kenneth Ro, MD | Physician
    • When doctors forget how to examine: the danger of lost clinical skills

      Mike Stillman, MD | Physician

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 3 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Why removing fluoride from water is a public health disaster

      Steven J. Katz, DDS | Conditions
    • When did we start treating our lives like trauma?

      Maureen Gibbons, MD | Physician
    • Why male fertility needs to be part of every health conversation

      Hoag Memorial Hospital Presbyterian | Conditions
    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Inside human trafficking: a guide to recognizing and preventing it [PODCAST]

      The Podcast by KevinMD | Podcast
    • Graduating from medical school without family: a story of strength and survival

      Anonymous | Education
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • The silent toll of ICE raids on U.S. patient care

      Carlin Lockwood | Policy
    • My journey from misdiagnosis to living fully with APBD

      Jeff Cooper | Conditions
    • Addressing the physician shortage: How AI can help, not replace

      Amelia Mercado | Tech
    • Why does rifaximin cost 95 percent more in the U.S. than in Asia?

      Jai Kumar, MD, Brian Nohomovich, DO, PhD and Leonid Shamban, DO | Meds
  • Recent Posts

    • How home-based AI can reduce health inequities in underserved communities [PODCAST]

      The Podcast by KevinMD | Podcast
    • Adriana Smith’s story: a medical tragedy under heartbeat laws

      Nicole M. King, MD | Physician
    • What if medicine had an exit interview?

      Lynn McComas, DNP, ANP-C | Conditions
    • Why U.S. health care pricing is so confusing—and how to fix it

      Ashish Mandavia, MD | Physician
    • From survival to sovereignty: What 35 years in the ER taught me about identity, mortality, and redemption

      Kenneth Ro, MD | Physician
    • When doctors forget how to examine: the danger of lost clinical skills

      Mike Stillman, MD | Physician

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Life is a terminal illness
3 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...