That’s not how it should work, death edition

In today’s post, I am going to take on yet another beloved cultural icon and heap scorn upon it. Since we are rapidly approaching the end of 2018 and preparing to greet a new year it seems a good time to address…


The Bucket List – and its many subgroups that involve all the great stuff you are going to do when you find out you are going to die.

Being alive is really awesome, just can’t say enough good things about it most days. Not all days, but most. Being dead, I can’t comment upon yet. But I certainly won’t be able to share my opinion when the time comes so that definitely gives it a downgrade in my book.

Having a list of stuff that excites you, stuff you want to do, stuff that you aspire to is a great thing. What annoys me is linking it to death, and even worse when we see it so often depicted as the last acts of someone who has been given a terminal diagnosis. You have seen the movies – curmudgeon who was a miserable sod their entire life discovers the true joys of being alive after they have been told they will die soon.

Or our cultural vision of life – grow up, get a job, work hard, sacrifice and save, and then retire and enjoy your life at the end of it.

Working in hospice, I found it pretty easy to get whatever I needed for my patients whether it was equipment, financial assistance, a food basket, or drugs to control their pain simply by mentioning that they were dying. Being terminally ill is the lottery you win in our culture. You get a specialized medical team that includes a chaplain and social worker, you get whatever meds you need to keep you comfortable no questions asked, we bring you a specialized bed, find you housing, and track down long lost family members.

I had an older man who had led a life spent on the margins of society. After his terminal diagnosis, the daughter he had abandoned as a child was located and she agreed to take him into her home. He had a hospice team including a bath aid, nurse, social worker and chaplain seeing to his needs. One day he pulled me aside and suspiciously asked if he had won the lottery or something. He had spent his life being invisible to everyone who wasn’t having him arrested, and now suddenly all these people were acting like he was some sort of celebrity. He was literally looking for cameras. All he had to do was get a less than 6 month prognosis. I have also had more than one patient who had struggled with chronic pain for decades burst into tears of gratitude when they finally got a terminal diagnosis because they would finally get their pain controlled. How fucked up is that?

A lot of folks have a list of all the stuff they would do if the doctor told them they were dying tomorrow. But it really doesn’t work like that. You ARE going to die. Guaranteed. But not like the movies.

How it really works:

You get a diagnosis. Maybe it is cancer, maybe heart or lung disease, maybe an autoimmune or progressive nervous system disease. When you get the diagnosis it is nearly always early enough to start some sort of treatments.  So you have surgery, or start medications, or get radiation, or go on oxygen, or get chemotherapy. You and your medical team are working to either cure you or to control your disease. You talk about remission, lots of statistics get thrown around. You hear about odds and recurrence and 5 year survival rates.

Your disease progresses. Treatment works for a while maybe, but eventually it doesn’t. Or it never works at all. Or it works perfectly but something else crops up as a result of the underlying disease or the treatment itself. In any case you are not getting better. Discussions on what the next step should be – is there a next step at all? Your overall health is assessed and your ability to tolerate potential treatments may be discussed. If your health is otherwise good, more aggressive or experimental treatments may be offered as an option. If your overall health is bad, it may be suggested such treatments could be lethal faster than just letting the disease take its course.

Your doctor -hopefully- tells you that there are no more curative options left and palliative treatment is what can be offered at this point.  A terminal diagnosis and eligibility for the Medicare hospice benefit is a prognosis of less than 6 months expected life. Sadly, the reality is that by the time folks are referred to hospice the time tends to be closer to two months of services.

So this is the point in the movies where your life REALLY starts. You have been through grueling treatments, illness ravages your body, the drugs you take to control your pain and symptoms mean you have drugs you have to take to control the side effects of those drugs. You are exhausted most of the time. But hey, you still have a vacation to the south of France on that bucket list, right? Zip line in the rain forest? Hike to the bottom of the Grand Canyon?  Swim in the Caribbean, visit the Taj Mahal…

There is a damn good reason why Make A Wish takes kids who just have a life limiting diagnosis. Some of them even get better. Because if you wait too long there is no energy or joy left for all that stuff on  that list. Too many people put off living so long they miss out completely. Realistically, odds are good when you finally get that terminal diagnosis it is not going to look one damn thing like a movie. You are going to be exhausted, sick, and not feel like doing anything.

So get up off your ass, stop waiting to live, and go do the damn thing now. Today. Worst case scenario you live a long, happy life and did the thing now instead of later. Hell, maybe you will even have time to do things you don’t even know you want yet. You are alive now. Act like it.

Death will come. Be ready to welcome it and greet it with gratitude. In a body that truly LIVED.