A Yuletide Carol

When you have a terminal illness during the holidays, you are haunted by your own ghost.

As you go through each holiday tradition and ritual, adjustments are made to accommodate your more limited capabilities. There are discussions about who should eventually take over certain responsibilities, and assessments are made as to whether particular traditions are going to be necessary at all in the future. Your ghost whispers, "When you aren't there to do it, or to need it."

When grace is said at the holiday table, overlaying the passionately expressed gratitude for our all being together, there is the silent yet universally understood question: Will we all be together ever again?

As you exchange parting hugs and the usual breezy plans for future gatherings with visiting relatives and friends, now there is a subtle shift of the eyes, a hesitancy or a forced jollity in the voices. Your ghost stands between you and your loved ones, pale and unacknowledged, but inexorable. Its presence fills the spaces between each spoken goodbye and between your bodies as you embrace: Will you be well enough to visit in the summer? Will you be there in the next holiday season? Or perhaps worse, will you be there, but in a condition that casts a pall over what would otherwise be a joyous occasion?

That we don't know the answer to any of these questions makes the ghost, if anything, even more real and more obtrusive than if we knew for a certainty the hour of our passing. If we could answer those questions, we could make plans for that eventuality. The ghost and its questions could be kept at a distance, at least for a while.

When I was in college, nearly the only thing the philosophers and the social scientists agreed upon was that what makes us human is our ability to live in the future. Every day we focus our individual and combined dreams, hopes, ambitions and plans on imagined futures, both near and distant. Nowadays there is some question as to whether this quality is vouchsafed only for humans, but still it is an experience that seems inherent to our existence.

Terminal illness interferes with that unique and humanizing process. By removing your ability to make plans for the future (at least, plans that you and your loved ones can really believe in), it makes you Other. Instead of looking into the future and seeing yourself enjoying this or accomplishing that, there is just a sort of grey obscuring fog, and your ghost with its persistent questions.

Your ghost demands that you make the most out of this moment, that you stay aware of and appreciate each thing as it happens, and there is good in that. But it puts you at a slight remove from everything - in a way, you are saying goodbye to each known and beloved person and experience as they pass you by. And because your loved ones cannot make plans for the future that include you (at least, plans that you and your loved ones can really believe in), they hold you at a slight remove, even as they feel the need to clasp you tighter. They cannot help but live in the future to some degree, because they are human. And so they, too, are saying goodbye.

In Dickens' "A Christmas Carol", Scrooge enters his Christmas morning burdened with those ghostly questions. He does not know if he will see another holiday season, or if the death of Tiny Tim can be delayed. He chooses to make the best of each moment he has... but he also makes promises for the future. In the end Dickens cannot help but reassure his audience that Scrooge and his little protégé live on for many years, allowing his happy characters that human ability to make plans and to avoid their own goodbyes for the foreseeable future. He could not leave that last ghost hanging about to spoil the pleasures of the holiday season for his readers.

We aren't always given that same privilege in life. We cannot write a comforting ending to our own story, one that answers and dismisses all the silent questions before they can be asked. We must live with the ghost while it is there, as best we can. If it puts us at a remove and makes us Other, we can still choose to appreciate what is human and sweet, while acknowledging that the bitter exists.

And maybe that is its own Yuletide Carol. We are our own ghosts, whether we see them or not. Perhaps that is as human as it gets.


The Violet Hoarder said...

Eileen--I am in awe of the clarity of your insights. You absolutely deserve a larger audience for these contemplations. They are painfully intimate yet completely universal. Great truths. Who could not grow in empathy from them? You say you can't look into the future, and I understand what you mean. But, maybe you could think about getting these things published in some fashion. I can't imagine there aren't many, many people who would benefit from them...like we your followers do. There are all sorts of self-publishing options online now, or maybe your mom and dad--veteran publishers--can help. But please consider NOT letting these missives disappear into cyberspace. They are just too precious, too beautifully written.

Roberta said...

I think we are sharing some sort of energy over the web or something...we are having similar thoughts...kinda scary if you ask my husband.

Sometimes I want to tell the ghost to go away out loud...but fear looking even nuttier than I do.

Love and hugs to you and yours...Happy New Year, Darling...

Carrie K said...

Haunting yourself. That's a perfect description to your peculiar existence right now. If we knew, what would/could we do? Probably nothing.

Anonymous said...

Eileen, I don't really have any words to say, just wanted to let you know I read your posts and found this very moving. I wish I could think of something comforting to say, but words fail me.

mrspao said...

Hug xxxxooooxxxx

Just another reminder that every moment we have with each other is so precious. pao always bemoans that fact that I keep a lot of photos on the memory card of the camera I carry round with me most of the time. Some of those are of the trip we took to MN to see you, Chris and Jeanne and I like to get them out to look at them whenever I'm having a low moment so I can remind myself of the lovely time we had together. Your photos are at the cafe in Stockholm with Scott and Bren and there is another at the Lark Toy Factory next to the carousel. They are such precious memories to me and carrying them around with me means I don't forget you and what you mean to me.

I know that time is not on our side and I may not see you again in person but I know I can gladly pull out my camera and see you and my mind and heart are full of gladness.

Ellen said...

I am grateful to you for writing what you do. You write things that may help me, and others, to understand what you are going through and I am humbled by your strength. Hugs, because that's all I can do.
Ellen (HPF)

krex said...

I don't have your gift for words, just feeling a loss of you already and still fighting the feelings with denial and rage . Wondering why I did not get to meet you 20 years ago or perhaps the cosmos knew that my lose would have been more unbearable if I had .

My parents said Life was unfair...I guess even they can be right occasionally .

Roberta said...

If I were well enough to travel...I would come visit you now, even just for a cup of tea and commiseration.
This club sucks.

timary said...

Upon reading this post, I had the very same thoughts expressed by The Violet Hoarder. I so selfishly hope that you are writing with plans to put everything in a form permanently available to everyone. How extraordinary that you, suffering through all of this horror, are able to enlighten and actually comfort us with your insights. Aren't we supposed to be the ones comforting you? God bless you, dear one. And thank you.

Nancy K. said...

This is a deeply touching, humbly revealing post! I hope that your ghost has your openness and humor...