I’ve been around death for some years now, perhaps working on my mortality, possibly figuring out ways to do good when you are not a saint.
My therapy work is also a wonderful way to nourish my love of dogs and understand people.
I’ve learned this: Some people think about how they wish to die, and there are people who can’t bear to think about death and don’t.
In general, our culture runs from death and hides it away in nursing homes and specialized hospital units. We used to see our mothers and fathers and grandfathers die. Now people die out of sight, at great cost and often great suffering.
This journey with my friend Susan is important, and for more than the obvious reasons. For me, it is a great shift from hurt to love. I’ve been angry about my hurt all of my life, and only recently have begun to see that love is the cure both for hurt and anger.
Anger doesn’t accomplish much, other than sparking more anger, and the world is brimming over with rage. I think it’s loves turn, at least for me. It feels better.
Susan and I have been talking honestly to one another this week, something we really couldn’t do until she started to realize she is dying. She asked me if I was angry with her, and I said yes, I was, I have been.
Because she wouldn’t face her illness or the idea of dying, she nearly died in an awful and sorrowful way. Because she wouldn’t talk about her illness or depression or death, she left an awful mess behind for other people to clean up. That will take years.
I feel for her brother, a good and honest man who faces years of legal and financial issues – house, car, taxes – because Susan kept saying she didn’t need a simple will. I understand why people run away.
I have no complaints, but a lot of people are scrambling to fill the holes Susan didn’t want to fill or deal with. And yes, that has made me angry at times. My love and affection for Susan has also returned, and that is a gift to both of us.
It is not hard to help her.
Susan couldn’t be bothered with mundane things like powers of attorney or where her dog was going to live or DNR (do not resuscitate) and other medical concerns either. She is bothering now, at least while she could.
When she was better, Susan hurt me, and hurt Maria, and I am happy to say I have shed this hurt and moved forward. Forgiveness is perfect for the forgiver. You can’t be angry at someone who is dying. There’s a lesson in that.
Love feels better than hurt and much better than grievance, as many people in our country will soon learn.
I am okay with it; it has been nothing but good for me, as sad as it is to see. And I have made new friends and opened new doors in this process.
I have been given the gift of healing, learning, growing up, and becoming more human. Humanity, like empathy and compassion, is something I want. I am not yet there but am getting closer.
Susan is helping me do that; we talked about it.
Susan isn’t cruel or callous; she means no harm; she was just self-absorbed and self-destructive. That’s what being hurt does.
Because she never learned to take care of herself, or bothered – her body is rebelling against years of neglect – all kinds people – most strangers – are rushing to take care of her. Instead of a peaceful and reflective path towards death, there is a mad scramble of confusion and fear.
It is not how I wish to die. It is not how I intend to die. If I pass along no other message, I hope that one comes through.
The way people are responding to Susan’s death is a beautiful thing to see.
Humanity lives. In my encounters with the sick, the aged, and the dying in recent years, I’ve learned that the people who talk about and think about it die well. In their homes, with friends or family, in peace and reflection and comfort.
People who don’t are plunged into the morass of the health care system, and become dependent on insurance companies, medical bureaucracies, medieval laws, and the mercy and goodwill of others.
Families either support a good death or refuse to let go and fight on beyond all reason.
Don’t go into hospice, Dad, you are not a quitter. We need you. I’ve heard it a hundred times. Poor Dad, he is ashamed and guilty to let go. No one who is dying ought to feel shame or guilt. When we are alone, he whispers to me: “I’m ready to go. I just want to die.” But he can’t tell them that.
Those are what I would call hard deaths. They are thoughtless deaths.
In our country, we hide from death unless it is violent. So it comes as a great shock to many, even though we will all die.
Most people don’t die violently. They get sick and have choices to make, and often get to make them when it is too late.
Susan was not able to think about her death. She wouldn’t do it, and she nearly died an awful death.
It is wrong to be angry with her for that, and I have moved to a better place. She deserves better than that as she moves to the edge of life Tomorrow, Maria and I will bring her some personal things from her home, she so can have them in her room, the last room she will know.
She reminds me to consider how I wish to die and to let Maria and the other people in my life know. It is my intention never to be found alone in my house because I was too proud or misguided to ask for help or face my mortality.
I did my will; I have my DNR; my doctors know exactly how I feel and what I want. So does Maria. We talk about it often. But Susan still won’t talk about death.
I am 72 years old, a lot closer to death than I used to be. It’s not a morbid thought; it is simply a recognition and acceptance of life.
It is true; I think that we die very much in the way we live. That inspires me to do it well.
I learned years ago that I know precious little in the scheme of things, I will not be shocked if death has some surprises for me. I know that when I die, my body will in some way return to the earth, and the earth knows how to turn death into a new life, you can learn that on a farm.
I will not be happy to say goodbye to life, to the challenges and lessons and triumphs and failures, to the good people and the broken people, to Maria and dogs and the people I love, to the refugee kids and the people who spend their lives doing good.
My new idea is that I will play a small part if making new life possible for others. But I am continuously grateful to my blog and the people who read it — no hiding from death here.
Your writing for today has touched my heart. Like you I have done my planning but not quite ready to say goodbye yet. Thank you.
Thank you…
“”Let’s talk about something pleasant”” is how it’s addressed and deflected with my mother. She has plans and we’re not privy to any of it.
Beautifully said Jon.
Thanks Susan..
Jon, thank you for taking us through this very personal experience with Susan as she faces her terminal illness with limited time left. This has given us all much to think about and serves as a warning about procrastination when it comes to wills, power of attorney, health care directives, etc. I’m glad Susan has agreed to Hospice. My personal experience with this service as I cared for my mother was very positive. Being a nurse, I knew what needed to be done and how to do it, but I appreciated their support when I needed it. I found them to be caring and responsive. My final wish for Susan is to be able to end her life in comfort, in peace and with dignity. Hospice will work hard to achieve that. Thank you again, Jon for this series of heartfelt meaningful posts.
Thanks Barbara, it’s important to write about it…
In the words of Henri Nouwen “In every arrival is a leavetaking;
in every reunion, there is a separation; in each one’s growing up there is a growing old; in every smile there is a tear and in every success there is a loss”.
It is said that patience is a virtue, but perhaps more importantly, acceptance is a virtue. Your words, Jon, remind us of that…
Thanks Lynn, I think acceptance is a great virtue, one of the greatest…
Thanks for quoting Henri Nouwen, I love his writing..
So many things to contemplate in Susan’s situation and your and Maria’s relationship with her- layers and layers. “Responsibility”, “boundaries”, “compassion” come to my mind. Very difficult, I think, to balance those – esp. when someone,, who has been hurtful in the past, is alone and dying. Looks like you and Maria are successfully juggling the balls, probably more than those three. Even young people need to keep their affairs in order, have a will; those of us 70+ years old, if we care at all for those who will inevitably survive us – it’s the least we can do. That and clear the basement of crates of 40 year-old baby clothes, Grandma’s chipped 12-place (complete with serving dishes) “fine” China, etc. – talk about a burden! When Robert Kleberg, (King Ranch, Texas), wealthy beyond measure in his day, died, his personal effects were his saddle and spurs, a pair of gold cufflinks, a few expensive suits – the rest was worn out stuff, and not much of that.
When my 90 year old father, in his right mind, physically okay for his age -was told that his slow-growing prostate cancer had spread to his liver and lungs – there was nothing more to be done – he wanted to die before he lost all dignity. After long discussions with my father, I was fine with that. Things could have been arranged for that to happen, or at least have him go into hospice – but here came the do-gooder’s. You know the rest. I don’t get it – every one of the do-gooder’s (and they do a lot of good) has no hesitation to euthanize a suffering animal, but a beloved person in pain, at the end of life : let’s light a candle and pray while they take their last gasp, because that’s God will.
I come from a family where some of those I am closest to showed me how to talk about death and what needs to be done when you are healthy and alert enough to make wishes known. My uncle prepared a book for my aunt of where things were that she would need (bank accounts, wills, trust info. Names and contact info for accountant, attorney, lists of accounts and how they needed to be paid or closed. Roger not only had a will before he died – he had a music set list of what he wanted musician friends to perform at a memorial! He chose hospice, but died, unfortunately, before we could get services in place. He even had his choice of “urn” for his cremains at the ready. I also have a will, executor, a DNR, and my medical info is all up to date. Docs here and in NY at Sloan-Kettering know what to do. I have 2 friends who are my healthcare proxies who know what to do should I not be able to articulate it. Though I am not ready to die anytime soon, I am ready so that no one is left with loose ends or has to imagine what I would have wanted. That gives me great peace of mind. I don’t know Susan well, but I had several in-depth conversations with her in the past and understand how she managed to avoid dealing with the current situation. She is fortunate to have the help of good friends and her brother to see her to the end of her life. I hope however the end arrives, it is peaceful for her.
Thanks Susan, I think she is heading for a peaceful ending now…she had a hard life..
Well you certainly got one thing right empathy and compassion is something you most certainly lack. All you hear in your writings about susan is I I I I I me me me me me me me. This poor woman is on her death bed and all you can do is belittle her for not having a simple will. For real. Maybe susan couldn’t be bothered with mondaine things because she wasnt expecting to have a terminal illness. I never see anything in your writings about how susan feels, what SHE is thinking, or how she is feeling. Good god talk about self absorbed, and self serving. Im sorry John, your not playing god and to refer to it as that is disgusting. And in Susan’s own words- do you know john. No, I dont i say. And she replies: not many people like him. And as i sit here reading your daily blog about her..now I know why. I’d use the term friend very loosely because as I see it your not a true friend.
Cathleen, sorry you don’t like what I write. I guess you are new here, and I should explain I am not looking for your approval or understanding of what I write. I write what I feel and need to write, and I very much needed to write this piece about Susan. I’m glad I did. You have no need to be disgusted by what I write. No one is forcing you to read my work. You should find a writer that you are more comfortable with. Peace to you, you seem awfully angry.
Truth is difficult at times. Only a true friend tells us the truth unvarnished.
In our society no one speaks about death or the things that one must undergo during the process. We grope around blindly without a road map wondering if we did all we should have done, or if we should have done it differently.
I’m sorry Susan is sick but I’m grateful someone is giving us a glimpse into the issues surrounding end of life.
I feel your pain through your words. I hope you find peace.
This is some of your best writing. It’s honest and authentic. All of it is about you, because you are going through it! I believe of all people Susan would understand this and gave you permission to do so as she is a writer as well. And a good one also.
Being attacked for writing your experience is uncalled for. The best writers write truthfully and honestly even if it causes discomfort and uneasiness. People who feel strong emotions may want to take the time to process and dig deep into those feelings to see why its provoking such a strong reaction.
Thanks Jon for cutting through the bs as always and being real.
It was hard to read for me but I did because the lessons you share are needed. There is not enough information about this difficult topic. Thank you for tackling it.
The death of others is complicated to me. I am most at peace when I feel I left nothing undone. No unfinished business.
Sounds like some readers feel entitled to “rubberneck” at the bedside of someone close to death.
Susan is extraordinary generous to allow all of us – those who know her and the many more who do not – to learn about what will likely be her final days. And we are all fortunate to have Jon and Maria as observers to what is happening and to share Susan’s story.
It isn’t a non-fiction writer’s job, I don’t believe, to ascribe thoughts and feelings to someone who is not in a position to talk about them. This isn’t fiction- it is the recording of a life that is coming to an end. The posts about Susan make it very clear that she has metastatic liver cancer, a disease and treatment that affects one’s ability to be clear about surface details, let alone personal thoughts and feelings. Jon tells us that Susan’s clarity of mind is fleeting at best. Jon has faithfully recorded conversations with Susan, including her inability to remain lucid. To expect the revelation of her thoughts and feelings under those circumstances strikes me as bizarre and less than compassionate.
This isn’t reality entertainment for readers. But it is reality, and right now it also is the sad end of someone whose life has been difficult at best. Thanks to her friends and family who have stepped in, I hope the conclusion of Susan’s story is peaceful and calm.
Wow, Susan, you said it better than I could have…there are always people throwing stones on what is sometimes anti-social media//hanks for your message.
I so appreciate your prospective and thoughts on so many subjects, and the subject of death is no different. Your writing is thoughtful, honest and important. Living as though we are dying is a very important way of life. To say what we mean and tell people how precious they are to us, to have our affairs in order. And most importantly to leave this world better than we have found it in every aspect of our lives. I pondered your sentence that we run from death and place sick and dying people away so we don’t experience death in our families. I wonder about this as a nurse and care giver most of my adult life. What I have witnessed is that death with chronic complicated medical conditions is very much a burden on most families. I have witnessed over and over again that families do not have the ability to stay home away from work and, most children of the elderly, are now parents have to work to make end meet and support their own children. Hospice is wonderful but it is not set up for staffing full time at- home care. We live in a complicated economic society with complicated medical challenges. Hospice is wonderful and I completely believe it is the best for people for end of life living. However, at home hospice takes at home full time care givers, usually family members for it to work. I don’t have answers…. What you are doing here with your eloquent writing is reminding us all that planing death related issues ahead of catastrophe is always best practice.
Sue and I were in college together and good friends then. The Susan that you describe is the Sue I knew and lost touch with. She WAS told how lovely a person she was, many many times. A group of us tried everything we could think of to help her see it and take care. I am so very grieved to learn how sick she is. I’d never be able to get there in time. I’m thankful that you are there and loving her.