As a former drug and alcohol counselor, I was trained to identify and deal with the “elephant in the living room”  In other words, the painful reality that everyone would talk around but rarely face.  It might be a family member's alcohol or drug use, domestic violence, or incest. 

Denying a horrifying reality isn't anything new.  But I never expected multiple myeloma to make the top ten list! That is, no one ever wants to discuss dying from myeloma.

Well, I want to – no, I need to – talk about death and dying.

Hearing your doctor discuss median life expectancy numbers is never easy.  Nor is reading about it on the Internet.

When I was first diagnosed with myeloma, the sudden realization that my time on earth is finite knocked me down and wouldn't let me get back up.  But with time, I climbed back up and started to live my new, near-normal life.

I started to write “with the help of friends and family,” but that would be disingenuous.  Truth be told, few if anyone around me helped me deal with my new-found mortality, elevating it to “elephant in the living room” status.

Living with a terminally ill cancer can be tough on everyone.  I get it.  And denial is a ruthlessly effective coping skill.  But using it indiscriminately isn't healthy.  At some point, the primary actors in this life-and-death play need to admit that everything isn't OK.

I may get it, but that doesn't mean I understand it.

For example, to say a myeloma patient is “terminally ill” isn't allowed in myeloma-speak.  As a matter of fact, I don't think I've ever heard the phrase used in our world.

Why?  Denial, of course!  For a majority of us stricken with multiple myeloma, much of our lives are spent “looking normal.”  It's the “But you don't look sick!” syndrome that makes it so easy to be lulled into a sense of complacency.

The irony of all of this is that most people are 70 years old or older when they are diagnosed with myeloma.  One would think someone who had lived that long would have come to grips with their mortality, right?  Yet even older patients and caregivers who have had years to adjust still can't seem to discuss the inevitable calmly and openly.

Which brings me to another reason our denial is so insidiously enabled.  It's the wildcard that keeps survivors, caregivers, friends, and family members hanging on: open-ended hope.

Anyone who gets out to a support group or follows patient blogs or columns hears inspirational and hopeful stories about exceptionally long-lived survivors, some that live decades.  Anyone grasping for a life-line might ask, “Why can't that be me?”  And this isn't an unreasonable question.  New novel therapies are allowing some of us to live two or three times longer than our myeloma brothers and sisters did just a few short years ago.

Anyone who reads my writing knows I’m an optimistic guy.  And yes, I will admit I hope I'm one of the exceptionally lucky ones, too.  But to deny the reality of our condition isn't fair to anyone.  It may even make those around the patient sick — and the patient sicker.

The same folks who remind you how you don't look sick are also the first ones to change the subject the minute a patient or caregiver needs to talk about dying.  No surprise there.

But what does surprise me is the way fellow patients often do the same thing.  Shutting down an important life-and-death conversation doesn't help the person who needs to vent or decompress, and it may not be good for the one who won't let them share.

There’s an unspoken rule in many support groups that talk about death or dying is verboten.  Perish the thought that someone wants or needs support in a support group!  Sounds pretty silly, doesn't it?  I think so.  But on the flip side, it isn't fair to others in a group who still aren't comfortable discussing the elephant in the living room.

My advice?  Support groups can do what I've done here.  Let people know in advance that the topic of conversation will be about dying. Then those who aren't comfortable talking about the subject can opt out for that meeting.  Or schedule a smaller meeting or coffee group to allow those who need to talk things out the opportunity to clear the air and get the help they need.  Having an experienced therapist's phone number at the ready for interested group members is a great idea.  Experience tells me most of us need counseling from time to time, ideally from a trained professional.

I’m fortunate that despite some early challenges, I haven’t had to struggle with depression. But depression is a common emotional side effect that accompanies a myeloma diagnosis and treatment.  With therapy that may or may not include medication, most can adjust and feel like themselves again.  Denying it only makes things worse.

On an individual level, patients need to get past the concern that discussing death – and what happens to loved ones left behind – might upset those closest to us.  Hiding how we feel from caregivers does them a disservice.  But if they aren't equipped to discuss reality, a patient (or caregiver) needs to find someone else who can help.

Myeloma patients and caregivers who refuse to acknowledge “the elephant” are robbing themselves of a life-affirming experience.  It is so freeing to accept one’s mortality.

I no longer fear death.