I have struggled for a long time to accurately describe the physical feeling I have courtesy of multiple myeloma. I have written about that feeling in this column before, most recently in No­vem­ber 2017. In that column ^[1], I named the sensation “none of the above” (NOTA), a not sat­is­fac­tory description. In fact, over the years, it has been far easier to tell medical providers what I do not feel, starting with pain and nausea.

I think I have finally hit upon an accurate description, courtesy of my husband Warren’s sudden flash of insight. It is not a one-size-fits-all description, but it fits me to a T.

Because my lab results have been flat line for years, the in­ev­i­table question of “So, how do you feel?” comes up pretty quickly. How do I feel? Well, my quality of life has been deteriorating for a long time now. I sometimes want to ask the questioner, “How do you think I feel?” But I tend to be nicer than that in real life, so I invariably try to stitch together some re­sponse­s.

My clumsy attempts are not satisfying, but they work. Sort of.

I recently was talking through the feeling with Warren. I talked about my vision of myeloma as a long journey. “I knew this would be a strenuous journey,” I said, “but I just didn’t figure on the sensation of dragging all this weight as I went on. I feel like I am dragging a sledge filled with rocks.”

Warren didn’t miss a beat. “Marley’s ghost!”

My God, of course! Marley’s ghost.

Marley’s ghost is a key character in A Christmas Carol by English author Charles Dickens. Marley is the spirit sent to tell Ebenezer Scrooge that he has the oppor­tu­ni­ty to change his coldhearted ways lest he end up doomed to wander the earth after death for not being charitable and benevolent. He makes his appearance in Scrooge’s bedchambers, drawing a chain clasped around his waist and trailing behind him. The chain is made of heavy items: ledgers, steel purses, cash boxes, keys, and padlocks.

Marley, in ex­plaining the chain, observes that he made it “link by link, and yard by yard.” Warning Scrooge that he too is making a chain, Marley exclaims that Scrooge’s chain was as heavy as this one seven years ago and that having labored on it since, “it is a ponderous chain.”

It is a ponderous chain indeed. And while I have not forged mine by my indifference to my fellow man, the myeloma, which, after all, is my cells gone awry, has labored for 15 years. No wonder I feel this heavy weight in my body.

There are many screen adaptations of A Christmas Carol, but my very favorite one is a 1984 version made for television with George C. Scott as Scrooge. Frank Finlay plays Marley’s ghost in that version, and it is well worth finding online the excerpt of that pro­duc­tion to see how the ghost ex­plains the forging of the chain. Warren and I watch this version of A Christmas Carol every Christmas, and the one recently past was no exception.

Small wonder Warren exclaimed, “Marley’s ghost!” when I talked about the sensation of dragging a sledge behind me. Of course, it is so clear now.

I have not yet shared this new insight with any medical providers. My local oncologist will be the first to, ahem, benefit from it. We have been together for over 15 years, and he has made it clear that I am a chal­leng­ing patient in that I keep him on his toes intellectually as well as medically.

Link by link, and yard by yard. I can’t wait to try it out.