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The other day I was in the elevator at a major Boston hospital heading to the 16th floor.  The elevator was full of people; visitors carryi...

Sunday, November 21, 2010

Life isn't that short.



For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way. Something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.
~Fr. Alfred D'Souza


I don't want to get to the end of my life and find that I lived just the length of it. I want to have lived the width of it as well.
~Diane Ackerman




No, life is not always short. It only seems that way when it is ending.

Life can feel really long to some people. Days, hours, months can seem to simply drag by, and some see only more empty time in the future. And it doesn't just feel this way to depressed people or old people in a nursing home. It can feel this way to each and every one of us occasionally. And sometimes more often.

Only when we know the expiration date in life or get sick or know someone who has died suddenly do we feel like our life is short.

Most of us trod along each day pretty certain that there will be a tomorrow. We plan for future events. We save money for our retirements. We think about our home and plans to downsize in the future when our kids are safely tucked away at college or beyond.

And most of us get there. We grow old. We have grandchildren. We do indeed retire. We stay healthy and vibrant for many years. It is good.

Some don't make it, I know. I am reminded of that each time I work. So I try to make the best of the time I know I have, like today and perhaps tomorrow. But I still think about the future. We can't always just live in the present, we must plan for our future whether we get there or not.

I think the problem arises when we think too much about the future and let today pass by, thinking that there will always be more time. So we let really important things wait.

Like telling someone we love them. Or reaching out to an old friend. Or going to see that movie we keep promising our children. Or that trip. Or that scrapbook.

We will get to it "when we have more time." That is what we say. And we fill our days with a lot of meaningless tasks that sit in front of us day in and day out taunting us. We feel somehow we must conquer the mundane first before can get to the meat of our lives.

And that is a mistake. A big, huge mistake.

So, life may be long. But don't fill those seemingly empty days with nothing. At least take time to do some really fun things and sprinkle them into the everyday upkeep of life.

Put down the laundry and take your kids to the movie. Let the dishes sit while you play a game with your family. Call an old friend even if you don't have time. Start that scrapbook, just do a few pages. Sort though old photos with your kids and tell them stories. Go for that walk. See that sunset. Pop over and visit that friend or relative you have been meaning to see. Put that picture in a frame so you can enjoy it. Finally get that dog you promised the kids.

Yes, there may be many more days to do these things. But we never know. And what we fill our lives with now will be the memories that future generations have of us. Do we really want them to think of us, even if we live to be 90, as the pragmatic soul who mindlessly watched TV or did dishes and laundry all of the time? Or do you want them to remember us as folks who ventured out of our pragmatism to do spontaneous acts of fun and good will? They are a much more powerful memory. And a much better example to follow for a meaningful happy life.

So, look ahead. Look towards the future. It is there most likely. But take a really hard look at your journey so far and then plan ahead and fill the rest of it, no matter how long, with some fun and laughter along the way.

A boring journey is just that, boring. So, save for the future. It is a must. And plan ahead. It is not only okay to be practical and prudent, it is imperative. But don't forget about the here and now. Cut loose frequently. Be spontaneous. Give out little gifts of yourself along the way to everyone that you know. Don't just pass them along after you are dead. A shared memory is the gift that keeps on giving. Giving your time while alive is much more precious than anything material you could possibly pass on after you are dead or disabled.

The journey is the best part of our lives. Don't squander it.

Spend the afternoon. You can't take it with you. ~Annie Dillard

“Life is not a journey to the grave with intentions of arriving safely in a pretty well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and loudly proclaiming ... WOW! What a ride!”

Life is not lost by dying; life is lost minute by minute, day by dragging day, in all the thousand small uncaring ways. ~Stephen Vincent Benét

To change one's life: Start immediately. Do it flamboyantly. No exceptions. ~William James

“I haven't a clue as to how my story will end. But that's all right. When you set out on a journey and night covers the road, you don't conclude the road has vanished. And how else could we discover the stars?”

Thursday, November 18, 2010

When we don't feel like being thankful.



Soon it will be Thanksgiving. Most people like Thanksgiving because a.) it revolves around food and b.) you don't have to buy gifts. I guess I should also add that it is a day for family and football as well. So all around, a fun holiday.

But some people are just not in the mood to feel "thankful." They may have lost a loved one, or have been laid off of work, or have a sick child. They may have memories of lovely family holidays in the past that no longer exist. They may hate being forced to be around people they just simply do not like. The list goes on and on.

So, what do we do when we feel this way? Certainly all of my patients and their families and friends do not feel so thankful right now. And platitudes and cheery greetings do not help at all.

So what does?

Really, there is nothing. Nothing can make the pain go away. But the problem is, most people turn inward towards the holidays. They steel themselves against any happiness creeping in. It is as though they won't allow themselves to feel anything but miserable. They sneer at the "lucky" people who seem happy and content. They simmer in their own regrets and misery. It can be a very lonely place indeed.

Well, I have to tell you something. We all feel like that on many days, particularly during the holiday season. Even the smiling, seemingly happy people. If you can remember that and remember that you are certainly not alone in your despair, it could help you to feel more connected.

And a connection to anything is something to be thankful for.

So, you may have a load of misery that feels especially compounded at the holidays. How to get through it? Connect.

You can connect in many ways. It is okay to reminisce about the old days. You are connected to them. It is okay to remember those we lost and pine for them. We are still connected even though they are not here in person. You perhaps had something great. And although it is gone now, you can be thankful for the wonderful memory, even through tears.

Now, the ones that are still here who drive us nuts are another issue. But we can be thankful we have to only see them occasionally. And leave it at that.

The bottom line is, you don't have to be thankful or cheery. You can feel sad at holiday time. But don't take it out on yourself. Do something nice for yourself. Connect with yourself if need be. And find ways to be thankful in small ways. Reach out to others instead of always drawing in and admit that the holidays can be tough and limit yourself to a few activities that make you, if not happy, at least content. And don't be alone. Connect to something, anything.

The holidays are hard. Life is hard. But we are really not alone on this. We are all connected to each other in so many ways.

And that is something to be thankful for.


A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. ~Herm Albright

If you don't get everything you want, think of the things you don't get that you don't want. ~Oscar Wilde

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~Hubert Humphrey

So often time it happens, we all live our life in chains, and we never even know we have the key. ~The Eagles, "Already Gone"

Tuesday, November 9, 2010

Sadness envelops the day.




Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.


People ask me all the time how I can be a hospice nurse. I tell them I don't know. And I really don't. But I do it and it usually makes me feel good that I am actually helping someone.

But yesterday, a very young patient died and now I am engulfed with sadness. She was a lovely young woman with much to live for, struck down by a cancer so devastating that I am not sure how she pushed forward for the 6 years since her diagnosis.

The treatments alone would have done me in. But she not only survived those treatments, she went back to school and received her Master's degree plus opened a restaurant. She was brave right to her very last breath. So brave. So very lovely. It was truly amazing.

I usually keep myself a healthy distance from becoming too involved with my patients. I have to. But I really liked her and her family. They were so genuinely kind and generous. And so I am devastated by this loss. The world is a sadder place for having lost her. And her family will move on but with a huge hole that will never really fill. My heart goes out to them.

So, how do we deal with this sadness? I am not always sure. I guess we just leave it alone and allow it to envelop us for a a while until we can come out of it to the other side.

There are no words that can make it better. No cheery platitude. No drug even. Not really. And there is no such thing as closure. We can put it away in our hearts, but the wound never really closes. We always remember.

So today I am allowing myself to feel sad. Death is sad, it really is. There is no denying that. And I see my fair share of it and have experienced it in my own life as well. I still to this day have very sad moments about the loss of my parents even though it has been many years.

They say that every death that touches us reminds us of all the deaths that we have experienced. I am not sure that that is actually true. I just think each death or loss is simply sad on its own accord. There seems to be no reason to complicate it any further. It is what it is. Sad.

Very, very sad, indeed.

So, anyway, I started this with a poem about death that is my all time favorite, if you can even have a favorite poem about something as awful as death, but here it is and I will end with the remainder of that poem.

(In honor of all of my patients, but especially for H.Y. and her family.)

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

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 for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

W. H. Auden

And if you would like to see a reading of this poem, which is from the movie "Four Weddings and a Funeral" but read well anyway, go to http://www.youtube.com/watch?v=b_a-eXIoyYA

Friday, November 5, 2010

Waiting for death to come.



Currently, I have several young patients that I am case managing. They are in the age range of 9 (yes, 9) to 53. All have been dealt a nasty hand with a nasty cancer. All are very sick with disease, but still quite functional.

All are waiting to die.

All have been given a time frame. And all have seen that time frame come and go.

I hate time frames. They are always wrong. Always.

The problem with time frames is that people start counting down the days. And they stop living. They just stop.

And they say goodbye and hug their friends and have tearful, heartrending talks and meet with their priests and some even pick out the music for their funeral. And then? They sit and wait.

And they waste a lot of precious living time.

It is a shame really. They just don't know what to do if they keep on living. And neither do their friends or loved ones.

So, they ask me. How much longer do I have? Why didn't I die yet? What is going on?

And I have little to say other than I just don't know and they are just going to have to keep living and so we move forward. Many times, reluctantly.

I wish MDs did not give patients a time frame. Some nurses do it as well and they are often wrong, too. I only can tell by my physical exam, but that is not to say that something catastrophic won't happen that causes sudden death. Like a clot or a hemorrhage or something else.

But I could say that about everyone I know.

So the point is to just keep living. Regardless of the hand you are dealt. And tell people every day that you love them and would miss them if they were not near you. Get that out of the way so that if you ever do get a bad diagnosis or are struck down while seemingly healthy, you will have no regrets. And the people in your life will be free from wondering how you really felt. It is a gift to them.

So give it often and freely.

My patients that have already said good-bye at what they interpreted as the end have many regrets. They regret doing it too soon and treating it like it was the last thing to say to friends and loved ones. Because now that are still alive, they don't know what to talk about anymore. So they avoid their friends and family. And they feel alone.

"So what do we do now? Do we just go back to the trivial," asked the wife of one of my patients.

Well, most times the trivial is the mainstay our lives. Laughing at a funny show, talking about work or school, asking what to have for dinner, picking out new furniture, watching sports. These trivial things are our lives. The "profound" really does not matter so much after all. We think it does, but a hug and a smile and a squeeze of the hand pretty much can sum it all up. And we can do that every day, even during commercial breaks while doing something as trivial as watching Dancing with the Stars.

So, just keep living. Don't worry so much about death or the end. It will come. It will. But life, life is all we know. And all that trivial nonsense we thought was a waste of time? It is as profound as anything else we could ever say or do.

So, my advice to my patients and their families is this; don't ever stop living. Keep doing what you love for as long as you can. Enjoy any moments that seem normal. Try not to look too often over your shoulder for the bad, it will come when it is ready. Laugh if you can. It is really okay. There will be many bad moments, but grasp any good ones that come along.

Feel free to be angry. Get really mad. You don't have to be strong.

This is hard.

Lean on friends for support. Allow them to help you. Call the nurse if you need help. We want to help, we do. You are not bothering us. Give us the burden of care so you can just be the wife, the husband, the sister, the brother, the child.

It is hard to wait for death. It is much harder than the fight to survive, even with the horrible treatments and side effects. At least you were moving forward. Death has its own time frame and follows no rules. The hardest part isn't letting go or fighting to live. The hardest part is waiting to die.

So, don't do it. Just keep living. Don't stop and wait for the end to come. Just try to keep moving forward. Listen to no one except the promptings of your own heart. It is the best and only reliable guide we have.

Sometimes even to live is an act of courage. ~Lucius Annaeus Seneca, Letters to Lucilius

Rejoice in the things that are present; all else is beyond thee. ~Montaigne

It is only possible to live happily-ever-after on a day-to-day basis. ~Margaret Bonnano

Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present. ~Babatunde Olatunji