If I could go back to the beginning, to that first doctor’s room the way it was and its quiet that was filled with growing concern, I would change only one thing. Not the diagnosis because as Steven Colbert opines “You cannot chose what to be Grateful for. You have to be grateful for it all”.
I would change the way the possible remaining time was introduced to us because time, more than cancer, became the thing we really would have liked to know with certainty.
It is clear to me now that Steve Jobs was right when he said you can only connect the dots looking back. Looking back the dots pointed me to a new behavior and a new freedom of being and more joy in my life that has come from all of this. Guilt is a terrible thing and I can have it and certainly carried it for a long time, but I overcame it. I embraced new joy for a time, but even now I am not free of the belief of tomorrow rather than the knowledge of now. Said more simply, I have returned to thinking my life only ends by getting hit by a bus.
I did learn clearly at that moment that her fate will be mine and yours. None of us have any guarantee we will live long enough to reach the five or ten year plans we imagine for ourselves living days in Anguilla or meeting up again on a beach in Zihuatanejo.
When the doctor said “six to eighteen months,” he thought he was giving us information that we could use. What he gave us was a countdown and not a clear one at that. Once you start counting down, you can stop living, and stress you never had worrying about tomorrow becomes your new way of life. You brace for the inevitable and to some extent stop living any kind of free life. It is hard to get that back and certainty of course is my dream only looking back. But what if? What of Hope?
Still, we were deep in the medical profession and had access few really have. Even still, we did know there was some finite point we could point to but we knew something was coming and we did not know when. But as I write in economics, the Doctor anchored us on 12 to 18 months.
Still, it was no longer going to be the 5 or 10 year plan to retire to the Caribbean like we had thought November of 2009 when the first sign was given to us but we did not really want to see it then.
If he had said instead, “You have 1,627 days, and 30 more that will be hard,” our life would have looked different. Maybe? We would have understood that the first 1,627 weren’t a funeral march. They were life a bit unpredictable to be sure, and sometimes painful. Still it would have been our life to live if we could figure out how to do it.
But how could we or how could anyone if you have no idea what time is. I wonder if Justin Timberlake could have put a clock on our arm.
As Dan Bern Wrote in his Lyric “I asked God” God retains a secret weapon. Time belongs to God.
I learned it more than her of course. I understood that it was her life being cut short and not mine. That is the grief each of us feels in a thing like this and “right soon” the warden would say.
We didn’t know the number of days then. You never do at the beginning. I am not sure you do in the middle, but I did at the end. Only then did I know.
What surprised me most was not the fear or the grief. It was how my thoughts of love and compassion changed. One morning you’re a husband and a partner. One day you are whose making coffee or planning the next trip was fun… but the next morning someone is a caregiver and someone is an advocate. Someone has to be a translator of medical shorthand and be the guard against the thousand small indignities people would place upon a person as they are going through the motions of care and not caregiving. They give shots, put in the port, take the x-rays and move on to the next patient.
You learn to be steady on command with what you have to do. The Caregiver starts the process of doing what they know needs to be done.
You are faced with the reality that your ten year hope was having wasted time to live already. This began to change at 51. I finally made the decisions I should have made sooner to leave the job that no longer mattered, live where I wanted to live, speak plainly, and stop pretending time was something owed to me. Some people read that as me being a bit too direct. Candidly, I care deeply. So much so that I do not guard myself or try to filter for the palatable truth someone needs to hear.
The lesson has now arrived fully but let me show you how I got there whether I was ready or not. I made all the decisions then that I could have made with her. I never left the job that was useless and unneeded. I guess we did live where we wanted to live at least for a time. The life that I was to have was being planned somehow and someway.
People think the hardest part is the diagnosis. The hardest part is when your life becomes unclear and uncertain in a real way. Newsflash. All of us have uncertain ends as Rush sings. But we have a life that is pleasant enough and creates a false sense of certainty for us all at least for a time. Until some “before you had and after you hope” that somehow you can get it all back.
You have to carry on both of you living a life. You have to build a new way of loving, a new way of being, a new way of holding on. Who are you? What are you? Why do we all play these silly games of social climbing and trying to say all the perfect words and be so correct? You might lose some of the social pretense.
Some of us eventually learn that none of this “matters.” We wrap ourselves in virtue signaling and things to show others thinking we matter. Can you name your Great Great Great Uncle? You have one. Who was it?
She learned all of this in the hardest possible way at 63, and I was left at 51 wondering whether I would learn the same truth without her cost (HINT: We won’t). Let me say it again this way.
She learned what we will all know in the very most difficult way at 63 and me remaining behind at 51 and now 64 as of this re-write have not really learned her lesson of life. I did learn peace and did find joy again and really hit a place of unconditional care for everyone. I have lost some of that around the edges because of getting back into a work profession that is not exactly one where you can be quietly anonymous about what you do. Still, I might be able to retain the beauty that would come to me in the learning she gave me that for a time I had to perfection. I Hope. And you can read it all.
This book is about that journey. It is about the long path between what you’re told and what you actually live. It is about how love changes when confronted with mortality, and how the daily grind becomes much more precise when you know time is finite, I mean you really know! We met our vows of “til death us do part” head on. That is not as easy as you think.
But it’s also about something I didn’t appreciate until much later. It is about how much life is still available even when a diagnosis you didn’t ask for comes along. We did laugh. We did get some of what we were back for a time.
But when you are the only one that remains what happens then? How is it joy comes back?. Even when you are finding joy again is that ok and how does that feel? I had to learn that laughter can coexist with fear and tears a walk on the beach and a random song like “Weekend in New England” could bring on.
I found myself standing again, somehow still upright ”making it through the rain,” as Barry Manilow once sang, a line that carried more truth than I expected.
If you are beginning your own journey, or walking beside someone who is, I offer this. Assume the first treatment will work. Assume you will have more time than you’re being told. Not because of false hope, but because you deserve no panic and to not surrender to hopelessness.
You deserve a chance to live the days you still have and not pretend you have lost all days to come. You never really know. Oh, you can suspect, but you never really know. Yes there is a point B but the line between A and it is not always straight. Try to enjoy the wiggles and curves in the line. Look for them when they present themselves and take the left turn.
I didn’t know how to do that at the beginning. Very few people do. But you can learn. You can grow and you can love someone not just in the way you promised on a wedding day, but in the way that only real hardship teaches.
This preface is not the story. It is only the beginning and the beginning of what I ended up learning when I looked back. And only when I looked back did I see the real story of how I came to be where I am. You cannot connect the dots of your life before the dots have been created. Hansel and Gretel could not get back on bread crumbs that they laid before the walked the path.
But if you walk through it, I hope you find what I eventually found. Even in the darkest times of life you do not have to give in. You can keep living. You have to. Did you know that on the death of a spouse the chances of the remaining partner dying within the first 12 months for men is a 70% increase in risk of death? For women it is 27%, Sometimes you just have to remember how to take it on and do something. Keep at it.
Do something typical and life affirming if you can every single day.
But while you are both still here, take the trip, have your date nights. And remember this.
1,627 good days is far more than the 365 to 545 we thought we had. I am not sure we can all avoid 30 bad days no matter what. But go Live with the good days you have and prepare yourself. If you are in this journey remember that you will remain after them. Do not let their last great lesson go unheard and unlearned. And remember today is someone’ Day One of the 1,627 good days they have left.