Almost invariably, every person with CLL will hear the refrain – as declared by my CLL specialist, no less – “You are more likely to die with CLL than from it.” And with the ever-expanding arsenal of treatments available, it might be even truer to say that we are far more likely to die with CLL than from it.
Still, that’s not true for every one of us.
Last year, I received an email announcing the death (from a Richter’s transformation) of a beloved member of the CLL Society’s flagship support group in Orange County. And last week, I learned of the death of another CLLer. And though the cause of this more recent death was not from CLL, the distinction is irrelevant to grieving family and friends.
The title of the 1974 Pulitzer Prize award for non-fiction – “The Denial of Death” (by Ernest Becker) – sums up concisely our culture’s discomfort around the topic. In my 5 years of facilitating the City of Hope support group, I have been fortunate to have been spared the need to pass along the news that a member of ours has succumbed to CLL. That good fortune will eventually be tested. How will we process that news when it happens? Will we allow space for sharing such sad news or demand that only good news be allowed in?
My thoughts: The nature of a support group is to create a safe space that can hold, absorb, and help its members process the full spectrum of experiences encountered as we learn to live with the reality of a CLL diagnosis.
Participation in our support group network means honoring every individual in their unique CLL journey, with gratitude for each story, and the multitude of ways members contribute to the whole. We never gloss over the more difficult realities of life, and death when it arrives. To do so disrespects the very real fear, pain, and challenges we might face, and erases, equally, real successes.
If the news and information were filtered to only allow discussion of good news — and there’s increasingly so much of it in the CLL community — there would be little need for a support group.
As a support group facilitator, it is not my place to take on the responsibility of deciding for whom the news of the death of someone from our community might be too sensitive, or unwelcome. To be a conduit of only upbeat news defeats our mission and would be a disservice to our community.
I often tell people that CLL – and you can substitute any other serious health challenge here – did not create your anxiety or existential dread; rather, it revealed it. Anxiety is the pre-existing condition that all humans are born with. We all experience anxiety and fear differently and, ultimately, it’s our personal responsibility to learn how to best manage it.
On a personal note, not long after my becoming paraplegic decades ago, someone said this to me:
“This injury is your master, it is your teacher, it is your guru. Take from it all of the richness of experience that it offers you. Do not fight it, but say, ‘Yes, I hear that. What are you giving me here? Where can I find the greater me through this experience?’”
Those words meant a lot to me when they were spoken. They still do.
You are welcome to be a part of our community. We value your presence and involvement. But know that, like a marriage, it’s for “in sickness and in health.”
Support groups are not for everyone. You’ll have to decide if it’s right for you.
Wishing you the best in these particularly trying times.
Stephen Feldman is a former Upper West Side New Yorker presently in the CLL protection program in Los Angeles. He is a graduate of Hunter College (B.A. Biology) and Fordham University (MSEd. Counseling Psychology). Stephen is the group facilitator for the CLL Society’s Los Angeles support group at the City of Hope Hospital in Duarte, CA. Contact welcomed: firstname.lastname@example.org
Originally published in The CLL Society Tribune Q3 2021.