September 30, 2011

The Value of Extra Time.

I volunteer a lot to speak or be interviewed for videos and such as part of my "bucket list" item of giving back. I have opinions on many things related to cancer, chronic illness, life and death, health care, etc. based on my personal experience which I love to share if they might help others understand. So yesterday, I was doing a video interview for my cancer center's new website and was asked how I would value the "extra time" I had been given through the treatments that I had undergone.

In all of my time thinking and writing about life and death, I have been looking at the big picture - the meaning of life, what happens when we die, what is a good death - that sort of thing. I had never had to focus on the incremental time I have been fighting so hard to attain. So the question caught me a little off guard and I had to think for a moment. But just for a moment, because the answer was pretty clear.

If there is value to life at all, there is obviously value to each and every day. It is why we continually strive to avoid getting ourselves killed or dying prematurely from disease. But when you have a terminal disease, every day is more valuable than those prior to the day you realized you weren't going to make it. Of course they are! The challenge is to make them more meaningful - to you and to your loved ones. If you can make those extra days special in any way, then they have real value. My own objective is to make each and every day I have left special in some way and, to a large extent, I have been able to do that. Not necessarily every day, but certainly overall (so far, anyway....).

But that doesn't really answer the question. To do so, you have to compare what you get to experience with the extended time you have left versus what you would have missed If you hadn't gone through all those surgeries, radiation treatments, chemotherapies (or whatever) that gave you those extra days, months or years. While there are many such events - big and small - that I could list if I had a bit more time to think about it, there are two that really stand out and that I am immensely thankful for.

The first was the recent death of my mother. While it was a sad event, it was part of the circle of life and I was around to be part of it. I was alive to be with her in the days before she died and I was at her side when she took her last breath. To miss that would have been a tremendous loss to me and would also have meant that this dedicated mother would have lost a son before her - a mother's worst nightmare. By fighting to extend my life, I saved her from that and we both were able to experience what was, for her, a good death. Now that has real value.

The other event is a two-parter. I was also here to celebrate my daughter's recent engagement to a young man I admire and respect tremendously, so I now have the very valuable knowledge that she will be able to experience life with someone who she loves and who adores her. (The fact that my wife says he is very much like me doesn't hurt either!) Of course, the other part of this two-parter, is that I will be here to walk her down the aisle on her wedding day and that makes both of us very, very happy (as well as many others)! While I can't guarantee it 100%, the wedding is only a year away, and I have done everything I can to give me the extra time I need and I am absolutely determined to make it happen. I wouldn't miss it for the world....... or even for heaven!

I think it is important to think about the time you might have left in this way - as an opportunity to experience things that you really don't want to miss. And be incredibly thankful for the extra time that you, your doctors and medical science have given you. Don't waste a moment of it! You've fought hard to get it, so make sure you use it wisely. And if you're at that difficult stage when you're unsure whether all the pain and suffering is worth it, think carefully what you might miss out on!

My little girl is getting married and nothing is going to keep me from being there and enjoying every minute of it!

September 20, 2011

No regrets?

Having just buried my mother, I have been thinking a lot about whether people die in peace and what it takes for them to have that privilege. My mother died in peace and I think she did because she had accomplished all she wanted to accomplish in her long life and because I was there with her telling her that everything was going to be okay. And, besides, she was ready to die. She was lonely, her health was deteriorating and, honestly, she had had enough. I felt her go and, at that moment, I felt a calmness and peace unlike anything I had ever experienced before. It was as if peace washed over her in a comforting, unseen wave, and I was picked up in it by virtue of my closeness to her. What a wonderful feeling and what an incredibly deserving way to go!

Dying in peace seems to imply that you die with no regrets. And while it may be nice to think that, I don't think we can ever have no regrets. Even if we climb every mountain, cross every sea, build giant corporations or become the leader of the free world, we will have regrets because at the end of our time, we are all just the same and nothing we own can be brought over to the other side to allow us to jump to the head of the line or demand any special treatment. We are just ordinary people and all of us have missed something in life - an unrequited love, an unspoken apology, a small kindness that just never happened. In this busy life we lead, we just can't do everything no matter how hard we try. So we all regret something. It is how we deal with these at the end that determines whether we die in peace, as my dear mother did. As I intend to.

A lady by the name of Bronnie Ware wrote a blog recently on Regrets of the Dying which she is turning into a book (see Bronnie has worked in palliative care for many years and, in her experience, everyone manages to die in peace. But she learned a lot from her patients in the last three to twelve weeks of their lives. While they were able to find peace in the end, they all had things they would do differently. She found several major themes that people had expressed as regrets or areas where they could have done better. I'll just repeat them here without her analysis and give you my personal perspective. Maybe yours would be different.

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

I think we all have to adopt a role to play in life. Something that gives our lives meaning. Something that, at the end of our days, we can look back and say, "I accomplished something. I was good in that role. My life had meaning." While I wish I could have known earlier how much I enjoyed writing and that I was good at it, I didn't, so I made my own choices based on what I knew at the time and became a businessman rather than a writer or journalist. The important thing is that I made the choice myself. No one else. I don't think I lacked courage so much as information about myself.

2. I wish I didn't work so hard.

Okay. Got me there. Part of this is the work ethic I have (partially inherited from my parents) and part of it is just the society we live in that forces us to work hard, spend too much time away from home, all to "get ahead". Can we blame society? I suppose to some extent, but it still comes back to choices. I could have chosen to be less successful. Or I could have chosen a more sedentary vocation (although I probably would have gone crazy). But I did choose to have a wife and children and I wanted my wife to be able to stay home with the children. I would say I chose right and, while I wish I had had more free time, I definitely made the right choice. Right, Dianne?

3. I wish I'd had the courage to express my feelings.

It took me a while to be able to express my feelings, first to Dianne and then to the whole world, but I did make that choice. I did have the courage. If I have any regret it was in not doing it sooner.

4. I wish I had stayed in touch with my friends.

Definitely. Friends are so important. But friends do drift apart for a variety of reasons that are nobody's fault. But it does take two to make a friendship and I could have tried harder. Dealing with cancer has taught me how important "real" friends are and I don't make that mistake any more.

5. I wish that I had let myself be happier. me on this one, too. Happiness is a choice, although it is often a byproduct of other choices you make. But it is a good guidepost to help in making many life decisions. I have let guilt and duty drive a lot of my decisions in the past, but have learned that this is not a healthy or happy way of running my life. I really try to make happiness a criteria these days, although sometimes it's damn hard. I just don't have enough time anymore to be unhappy or to make critical mistakes.

There are other regrets that many of us could identify. My dad, when I talked to him about death shortly before he died, told me his only regret was that he didn't meet my mother sooner. It was a lovely sentiment and one that I share, but he couldn't have controlled that anyway. So it is not a regret that he would curse on his deathbed. He was ultimately happy with the choices he made and that is what counts. It allowed him to die in peace as well. I think we all might have regrets like that.

Overall, it seems that a lot of so-called "regrets" stem from choices. Maybe we can't go back in time and make different choices (with no real guarantee that we would be better off anyway), bur we can stop the insanity and make the "right" choices now. While we have time, no matter how little we may have left.

So, in fact, it is never too late to die with no regrets. To die happy. To die in peace.

That's the plan, anyway!

September 10, 2011

Bye Mom! I Love You!

My mother died this past Wednesday just short of her 91st birthday and four and a half years after her husband died at the age of 92.  As a son, it was a terrible, although not unexpected milestone in the circle of life.  As someone with a death sentence of my own, it was doubly emotional, yet full of lessons.

My parents had 59 wonderful years together.  When my dad died, relieving him of a very painful existence, my mom was left alone in a modern Long Term Care facility, several hours away from her closest child (me) and virtually blind.  She was a very practical woman who was able to carve out a life that sustained her for four more years.  It was in the last several months that her health deteriorated significantly and dementia stole away her sharp, clever mind.  She became very sad and often said that she wanted to die.

I visited her the Sunday before she died with Dianne, my daughter Caralia and her new fiance, John. In a rare show of clarity, she expressed her excitement about their recent engagement but for most of the time she wasn't making much sense.  When I returned on Tuesday, she was in bed, unable to move on her own and having trouble breathing from a full-blown case of pneumonia.  She was under palliative care with a DNR order, so she was only being kept as comfortable as possible.  She was like this until she passed away the next day at 5:30 pm.  She died comfortably with her near-blind eyes staring up at my face.  She knew I was there.  I held her hands and kissed her while I played Oh Danny Boy on my iPhone near her ear.  It was her favourite Irish song (she was a fine Irish lass herself) and I thank Dianne for the idea.  The song was winding down as she took her last breath.  It was over and was a blessing and a relief for her and for all of us.  I cried but I felt at peace now that she was.

During the time that Dianne and I were with her, I had a lot of time to think about what my mother was going through and what that might mean for me.  Did she die a "good death"?  I hope for that myself, but it made me think about what that meant.  Certainly her moment of death was "good" - as good and peaceful as it could be.  I would like that too.  I want to die quietly and at peace listening to my favourite song.  I want Dianne and my kids with me in those last minutes.  That's part of it, but there is more to a good death.  The key to a good death is a good life and I hoped that my mom felt that she had lived a good life and accomplished all she wanted.   Except for the last couple of months, I think she did.  As for me, I still have control over the things that will allow me to make sure that I have done all I can and that I've made the most of all my remaining time.

I encourage everyone to think about their mortality early because I believe you have to accept the fact that you are going to die in order to make sure you are living life honestly and to the fullest.  It is equally important to talk about death with those who are dying so that you know what they want and to ensure that you have said all you need to say.  I talked to my mom about death when my dad died and I know that she recognized she only had a limited time left and that there really wasn't much more she needed to accomplish in her final years.  More importantly, over the past few visits I had with her, I was able to assure her that she had been a wonderful mother and wife and that she had many people who loved her.  I was able to tell her that I loved her very much and that there was nothing wrong with wanting to die when your quality of life had degraded and you had done all you had set out to do.  During the final hours, I gently told her that everything was going to be all right, that soon she would be free of pain and that she would be with my dad.  I told her it was okay to let go whenever she felt she was ready.  I guess that makes it a pretty good death and it was my great gift to be with her when she passed away listening to the final strains of her favourite song.

Was I right in telling her that she would soon be with my dad?  I don't know for sure that it was true, but it was the right thing to say to her.  It brought me back to wondering again what happens when we die.  I think about this a lot and I will share many of these thoughts with you over the next months.  Just as I hope there is something for me, I definitely hope that I told her the truth.

Perhaps the biggest lesson I took from this experience was the importance of being with your loved ones when they die.  I have never felt closer to my mother.  We shared an intimacy that can only be experienced when you are together in the final moments.  I wouldn't trade this for anything.  And the fact that I was able to share this moment with Dianne made it even more special because we both got to forsee what will take place between us in the near future.  It has brought us that much closer together.

Finally, as I walked down the halls of the facility for the last time, listening to the elderly blind man yelling, "Please, please help me!  Somebody turned out the lights!" for the umpteenth time, I saw how life goes on.  How when we die, only our existence on this plane ceases and everyone else just keeps on keeping on.  We always return from whence we came and hope only that our lives have been good and meaningful.  We don't all have to be famous or go down in the history books.  We can just be a good mother, father, sister or brother; a good wife, husband, grandma or grandpa; and a good friend.

Like my mom.

Rest in peace and say hi to dad.  I'll see you both soon.

September 2, 2011

Fears of Dying.

I'm not afraid of dying. Not now anyway. But I do think I'm afraid of experiencing the fear of dying as my time gets closer. When I start to feel that cold breath on the back of my neck, then I will be afraid. And I'm not looking forward to it.

I started thinking about this the other night. I was watching a TV show (Flashpoint, if anyone is interested in good cop shows) and one of the characters rushed to the bedside of his dying father. When the old man saw his son, he looked at him and said, "I'm scared!". It was a nice scene, very heart-warming, but I found myself contrasting that with my own father's death a couple of years ago. While my dad never said he wasn't afraid, I am convinced that he was very much at peace with the prospect of dying. He had a good life (92 years) but his last few years were not kind to him. He was ready to go and I think he was feeling good about what he had accomplished and what he had experienced during his long life. It was time to go and I truly believe he welcomed it with open arms. Perhaps he felt the fear of the unknown but I don't think he feared death itself. I like to think that he welcomed the relief from pain and the end to a downward spiral that wasn't going to stop. Perhaps for some, it is that sense of relief and release that overcomes the fear. I hope that's the way it will be for me.

On the TV show, the dying man's son said, "Don't worry dad, I'm here.". What he meant, and what I would want to hear from my family if I was in the same situation is something like, "It's okay to be afraid, but it's also okay for you to go now. You've earned your rest and we'll be right here with you for as long as it takes." They can't perform medical miracles, they can't take the fear away, but they can provide the kind of moral support only family can give and perhaps make it a little easier.

I titled this post "Fears of Dying" because death brings out different kinds of fears in the person who is dying and those around them. Lets start by looking at exactly what we are afraid of.

For most of our life, we make choices that help us to avoid thinking about or dealing with death. The biggest fear I think we all have is having to leave behind the wonderful life we've spent so long and worked so hard to create. For all of us, to varying degrees, this includes the material things that seem to mean so much at the time. I mean, who wants to lose that high-end Beemer and the grossly oversized house we've worked so hard to obtain? Those "things" that tell the world we've made it! Hopefully, as we get older, we learn that these things are really not that important and that we can't bring them with us anyway. Life is not a competition where the one with the most toys at the end wins! By the time we are on our death beds, hopefully we are thinking more about the people we are leaving behind, which is the real loss we should be feeling. For nothing is more important than those we love and those who love us.

A lot of fear comes from the fact that we can never know what comes after. We can guess. We can hope. Or we can "believe". We can accept as fact the story that our formal religions tell us based on interpretations of the Bible, the Koran, the words of the Buddah, etc. If you truly have faith, the kind of faith that leaves no doubt in your mind, then you have nothing to fear and, for your sake, I really hope you're right. But regardless, your belief allows you to die in peace and that is a great and wonderful gift.

I don't pretend to know what comes after. I just don't have enough faith. I'm one of those people who need proof and this is not something for which proof is readily available. And even if I chose to accept a particular story, I could never be 100% sure, so I would always be worrying to some degree. For me, I'm not afraid to admit that what I fear is the dying process itself. I am already dealing with chronic pain, which is severe at times, and I know that it will get much worse. I definitely fear that! And along with the pain, I expect increasing difficulty breathing and anxiety - lots and lots of anxiety. I suppose I could be drugged up so completely that I wouldn't notice these things, but that's really no way to spend my last days.

I also think that many people, if they have the time to think about it, may be afraid that their lives have not been fulfilled. That they haven't done enough or been good enough. Maybe that is enough to fear in itself - the fear of not being all you hoped you could be. Or maybe, in some extreme circumstances, they fear that not doing enough condemns them to hell, a very scary place in most people's minds - if you believe in that, of course. Or maybe even if you don't. Cuz you never really know, do you?

Personally, my biggest fear is for my family. For my children who, while grown up, are losing their father and the emotional support and guidance that I can't provide when they are faced with the difficult decisions and crises that life can bring. I know they will be okay, but a father can't help but worry! But Dianne, my dear wife of 34 years, my soul mate, my best friend. I am terrified of losing her and I am terrified for her when I am gone. I know she is terribly afraid of being left alone and of growing old without someone at her side who really understands her. I feel so badly for her but I know in my heart that she will be "okay". She is smart, people love her, and she has the ability to be very independent when she needs to be. And most importantly, she has a strong and caring daughter and future son-in-law who are committed to being there for her. But we have been together for so long, and it's been so good, that its gonna hurt real bad.

And while I have my own fears of dying, my death will also arouse fears in others. Clearly, my family has to deal with their fear of losing a husband and a father and I am so, so sorry to be doing that to them. Perhaps not so obvious are those people who feel uncomfortable talking about my death. For them, thinking about my mortality makes them think about their own, long before they want to. It scares them. It arouses fears that they wish they didn't have to deal with. Well, I'm sorry about that. Please use it as an opportunity to really appreciate what you have today and make yourself a promise that you are going to make the most of every second you have. If my death can help you do that, then I've accomplished one more good thing.

While it's impossible to avoid the fears you have for your loved ones, I wish we could learn to not fear death itself. I wish that we all could think about death as part of life. As the beginning of another journey rather than the end of all things. But that requires belief, and faith. And I'm afraid that many of us just aren't there yet.