W. H. Auden
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong.
Over more than 3 decades of living together we built ourselves a special world-for-two, my husband and I. Our own private paradise became all the better after we retired from the hustle and bustle of high pressure careers.
We were so sure PC was going to make it, that the cord blood transplant would be a success and we would go back home without the sword of CLL hanging over our heads. Failure was not an option for either of us – so much so that we never made any contingency plans, never took the time to say all the things we had to say, our just-in-case goodbyes. Then suddenly it was too late to say anything. PC was in a coma from which he never recovered. And for the rest of my life I know I will be fighting a battle with grief and loneliness.
It is a little over six months since PC passed away. My mind keeps picking at the details of that last week in the hospital over and over as I lie sleepless at night, scabs on my heart that won’t quite heal. Each stark and horrifying detail is etched in my mind, including his last moments as I watched the monitor count his heart beats down to zero. The last thing I did before I left him lying there in the ICU ward was to take off his wedding band. I now wear both of them, his and mine. His band is a little loose on my finger – it makes soft clicking noises against my own wedding band as I pound away on my laptop, each keystroke underlined by a soft click reminding me he is really gone. If any part of him still exits, it is as a memory – a simulation in my brain. In any given situation, I can imagine exactly what he would say, how he would react, how he would look and sound. I can almost hear him saying “Hi Sweetie” in the special voice he reserved just for me and the gentle smile that went with it. When I am gone, this simulation in my mind will be gone too. Our two wedding bands will gather dust in companionable oblivion in my daughter’s jewelry case – a fitting end to our unconventional and sadly unfinished love story.
I have learned most people have a time limit of sorts for grief, a period of indulgence when grief is socially acceptable. Mere acquaintances feel their obligations met after a cliché or two, a nice Hallmark card in the mail, a brief and sometimes uncomfortable condolence phone call. Closer friends and family will indulge you for a while longer. But the day will come when they too drift away, anxious to get on with their own lives and erase the dank memory of death and grief – bleak reminders of their own mortality – that would otherwise darken their sunny days. We walk in a twilight zone, CLL spouses that take care of our stricken partners; some that have lost our mates to this disease, some with the sword still hanging over our heads. We straddle the sunny world of the living and twilight memories of lost loves. Our long drawn out grief fighting this “good cancer” is rarely understood, except by others who share our experience.
I expected flashes of “survivor’s guilt”. Why did he have to die and why am I still alive? I was prepared for that. But what did catch me by surprise was the number of patients who were angry. PC’s story hit home hard for a lot of people. For them, after PC’s death I became a tarnished mascot, a failed advocate. If I could not protect PC, what good am I to them? Good question to which I am afraid I have no answer. My excuse is that I never sought the responsibility of being a cancer “guru” – there are far too many of them out there already. The best I can say about myself is that I have walked in your shoes and I will continue to do so for the rest of my life. You have to decide if that is good enough for you.
Most of you I have never met. I know you only through the emails we have exchanged, sometimes a photo or two to put faces to names. Often enough, a spouse that I got to know very well would write to say goodbye, the death of the loved one precipitating unilateral decision to end our friendship as well. But for each such goodbye that I mourned there were many more hellos, new names, new stories that had uncanny resemblance to all the other stories I have listened to over the past seven years. The list of friends I have lost to CLL grows a little longer each year. There are too many addresses in my email address book that I do not have the heart to delete, anymore than I can delete the memories in my mind.
I dithered about publishing this article. Is it too personal, too mushy? But they say grief shared is grief reduced and I thought I would open this topic (can of worms?) for those of you who might find comfort in sharing your own experiences coping with loss – loss of robust good health you once took for granted, loss of unlimited time and wide open possibilities, loss of second chances to re-do and make amends, loss of time to do all the things you wanted to do and be, before CLL became a part of your daily equation. And finally, for far too many of you, loss of a special some one that was your compass, your North, South, East and West.
Chaya (& PC)