The escape artist.

It was a very hard time when my Mom was sick. There were a lot of very difficult things that needed to be done, and only me to do them. I was in my early twenties and my family and friends had bailed on me.

I wasn’t prepared for any of this. My Mom wasn’t supposed to die at 53. I didn’t know how to deal with chest tubes or administering medicine every four hours for months at at a time. Just because I’m a daughter doesn’t mean I’m a competent caregiver.

So I separated myself. I believe it is called dissociation. I was there, sort of. I did all the stuff that had to be done, but I didn’t think about it. My mind wasn’t there. It was too hard to deal with but I couldn’t run away from it like my brother and father did. So I ran away in my mind. It was kind of being like an escape artist, like Houdini. I smoked a little pot to take the edge off. Years later when I had the time I went a little crazy because I’d not had the ability or time to grieve. There is nothing like learning how to deal with grief like being in a mental hospital.

There isn’t any training for this. It is hard enough to watch your mother die. It is hard to be a caregiver for someone who is dying. It is impossible when the dying person is your Mom.

It is very intimate caring for someone who is dying. It is very intimate to be with them in the middle of the night when they start freaking out about all the things they haven’t done, or about the afterlife. It is very intimate dealing with bodily fluids and pain.

In a way it was my gift to her. She gave birth to me. I helped her die. There is a strange balance here.

She didn’t die well. She had spent most of her life avoiding thinking about the future or anything really important. She didn’t plan ahead. She had no retirement fund. She didn’t take care of her health. She never got any education past high school. As for her soul, she ended up getting her religious education from me.

It is very weird being your mother’s teacher. I had read quite a bit about religious matters in the previous years, and had returned to church at 20. It was the same church where she was married, but hadn’t gone to since. The minister I found for her was from the Episcopal student ministry I was part of. He didn’t know much about how to prepare someone for death, so I got to do it. Something was better than nothing. At one point I gave her a copy of Stephen Mitchell’s “The Gospel According to Jesus.” The priest thought it was watered down. He didn’t approve of that translation. He wanted her to read the Bible. I pointed out that she didn’t have time to read the original. Sometimes you aren’t able to eat big meals, and all you can handle is baby food. This was the Gospel in a distilled version, just the words of Jesus. Easy to digest. Baby food. It got the point across in a way she could handle.

But there was nobody there to train me. There was nobody around to tell me how to deal with the heaviness of my Mom dying and the heaviness of dealing with the strangeness of dealing with the very real and very gross nature of dealing with someone who is terminally ill. I prayed a lot. God helped.

One “friend” wrote to me to tell me how sad she was that my mother was dying. Her advice to me was to “let Jesus into my heart”. I can’t stand Christians sometimes, and I am Christian. I was really angry when I read that letter. She didn’t know that I’d gotten confirmed years earlier. She didn’t know that I went to church every week on my own. She didn’t know that I’d helped create the Episcopal student ministry. She didn’t know because she didn’t ask. She’d been a friend in high school but we’d grown apart. She assumed that the answer to my problem was Jesus, not knowing that I was already a Christian. She would have taught me more about Jesus if she had shown up and helped. “Letting Jesus into my heart” didn’t get the laundry done or the groceries bought. “Letting Jesus into my heart” didn’t help when my Mom needed more pain medicine or a Valium at four in the morning.

Houdini died from being punched in the stomach. He had a trick that he did where you could punch him in the stomach as hard as you wanted and he wouldn’t be hurt. The deal was that he had to prepare for it first. He had to know it was coming. The person who punched him the last time didn’t know about that and just hit him.

We are like this. We need time to prepare for heavy things. We can handle quite a bit if we have some warning and training. But when we get blindsided, we can get really hurt.

This experience didn’t kill me, but it did teach me a lot. It taught me about my own strength. It taught me that there were a lot of people I couldn’t depend on. It made me grow up fast, a little faster than I was ready for.

In memorium.

Should we grieve more for one person and not another?

Is the death more tragic if it is a young mother, or if it is an old spinster?

Is it more sad if a child dies or if an adult dies having never really lived?

Is it more tragic if a famous person or an unknown dies?

All deaths are meaningful. All deaths are sad. All are different. The homeless woman’s death is just as important as the Queen’s. Death will take us all. Death is the great equalizer. Death wins.

We can pretend that death is far away. We can pretend that it will happen another day, to another person. We are special. We are different.

We aren’t. All of us are going to die, one way or another. Like it or not, you can’t escape it. You can’t take your toys with you. There are no guarantees of life, no do-overs.

Tomorrow never comes.

Until it does. Don’t take it for granted. Take it as a gift. Don’t waste it.

Every day is a new gift. Every day is another chance. Make that phone call. Write that book. Start that search for the job where you feel useful and needed and worthwhile, where you get to do what you feel called to do. Go back to school. Whatever. Or learn how to be happy where you are.

One of my friends from high school died today. She was in her mid 40s. Young. With children. A beautiful soul. We hadn’t seen each other since then, and had only recently found each other in the past few years on Facebook. She had brain cancer. Cancer is a terrible way to go. It eats you up, slowly transforming your cells into cancer cells. The treatment is barbaric. Slash and burn, poison and cut. Sometimes the treatment is worse than the disease.

Sandy and I first knew that we had something in common while we were in Economics class. We were bored. We were sitting several rows apart. Somehow I caught that she was quietly singing a Violent Femmes song with a friend of hers. I knew it – and I started singing along. “I take one, one, one cause you left me, and two, two, two for my family…” I knew it, and I was in. I had the secret code that let her know I was weird. Once you were in, you were there. We were great friends after that. The last thing I remember doing is going trick-or-treating with her and two other friends. We were too old to go, really, but we went anyway. Sandy drove, and we picked the rich neighborhoods for our hunt that night. We did well.

I’m grateful to have known her. I’m sad, not really for me, but for her family. I hadn’t seen her in many years. We’d grown apart, like people do. Her loss won’t hurt me as much as it hurts them. But I hope to remember something of her spark, her spirit, her smile. She was funny, and snarky, and smart, and beautiful in all the right ways.

Rest in peace, Sandy Scott. May your memory be a blessing to all who knew you.

Death books

Books on death, dying, and funeral customs. Face your fear. These are in no particular order. I’ve read most of them. Some look interesting and I’ll get to. There is enough information here for you to get them from Inter-Library Loan (ILL) if your local library does not have them.

CALL # 611 R6282s.
AUTHOR Roach, Mary.
TITLE Stiff : the curious lives of human cadavers
ISBN/ISSN 0393050939 (hc : alk. paper)
ISBN/ISSN 0393324826 (pbk.)

CALL # 393.9 P9772f.
AUTHOR Puckle, Bertram S.
TITLE Funeral customs : their origin and development
ISBN/ISSN 1558887504 :

CALL # 393 M6475f.
AUTHOR Miller, Clarence W.
TITLE The funeral book
ISBN/ISSN 1885003021 (pbk.) :

CALL # 155.937 C69h.
AUTHOR Colgrove, Melba.
TITLE How to survive the loss of a love
ISBN/ISSN 0553077600 (pbk.) :

CALL # 152.4 J279g 2009.
AUTHOR James, John W.
TITLE The grief recovery handbook : the action program for moving
beyond death, divorce, and other losses including health
career, and faith
ISBN/ISSN 0061686077 (pbk.)
ISBN/ISSN 9780061686078 (pbk.)

CALL # 362.14 S92m.
AUTHOR Strong, Maggie.
TITLE Mainstay : for the well spouse of the chronically ill
ISBN/ISSN 0316819239 :

CALL # YA 306.903 M6138t.
AUTHOR Meyers, Karen, 1948-
TITLE The truth about death and dying
ISBN/ISSN 9780816076314 (hardcover : alk. paper)
ISBN/ISSN 0816076316 (hardcover : alk. paper)

CALL # 393.9 M9841m.
AUTHOR Murray, Sarah (Sarah Elizabeth)
TITLE Making an exit : from the magnificent to the macabre-how we
dignify the dead
ISBN/ISSN 9780312533021.
ISBN/ISSN 0312533020.

CALL # 362.1756 H4342.
TITLE A healing touch : true stories of life, death, and hospice
ISBN/ISSN 9780892727513 (hardcover : alk. paper)
ISBN/ISSN 0892727519 (hardcover : alk. paper)

CALL # 616.078 N969h.
AUTHOR Nuland, Sherwin B.
TITLE How we die : reflections on life’s final chapter
ISBN/ISSN 0679414614.

CALL # 155.937 L8499f.
AUTHOR Longaker, Christine.
TITLE Facing death and finding hope : a guide to the emotional and
spiritual care of the dying
ISBN/ISSN 0385483325 (pbk.) :

CALL # 155.937 K95od.
AUTHOR Kübler-Ross, Elisabeth, 1926-2004.
TITLE On death and dying : what the dying have to teach doctors,
nurses, clergy, and their families
ISBN/ISSN 9780684839387 (trade pbk.)
ISBN/ISSN 0684839385 (trade pbk.)

CALL # 344.7304 U78L.
AUTHOR Urofsky, Melvin I.
TITLE Letting go : death, dying, and the law
ISBN/ISSN 0806126353 (pbk.)
ISBN/ISSN 0684193442.

CALL # 155.937 B398i.
AUTHOR Becvar, Dorothy Stroh.
TITLE In the presence of grief : helping family members resolve death,
dying, and bereavement issues
ISBN/ISSN 1572306971 (pbk.)
ISBN/ISSN 1572309377.

CALL # 393 E845.
TITLE Ethnic variations in dying, death, and grief : diversity in
universality
ISBN/ISSN 1560322780 (pbk.)

Greening Death: Reclaiming Burial Practices and Restoring Our Tie to the Earth by Suzanne Kelly

When We Die: The Science, Culture, and Rituals of Death by Cedric Mims

Saying Goodbye Your Way: Planning or Buying a Funeral or Cremation for Yourself or Someone You Love by John F. Llewellyn

Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way of Burial by Mark Harris

The American Way of Death Revisited by Jessica Mitford

Smoke Gets in Your Eyes: And Other Lessons from the Crematory by Caitlin Doughty

Dealing Creatively with Death: A Manual of Death Education and Simple Burial by Ernest Morgan

When Death Occurs: A Practical Consumer’s Guide Funerals, Memorials, Burial, Cremation, Body Donation by John Reigle

The Funeral Book: An Insider Reveals How to Save Money and Reduce Stress While Planning a Funeral by William Miller

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan

Death story (people tend to die the way they live)

One of the most helpful things I learned when my Mom was dying was in the middle of the night.

Normally the nights were uneventful, but this one was a doozy. She was yelling something about the mama and the baby and the man and it didn’t make sense. I have a pretty good ability at being able to understand people who can’t communicate well, but I was at a loss here. I was alone with her, as I was during most of that year she was sick. When her sickness became terminal, we were even more left by ourselves.

She was under the care of hospice by that time, but that didn’t mean they were there. She was at home, not in a facility. A nurse would come by once a day for about twenty minutes. Towards the end a sitter would come for a few hours as well. A social worker would come out maybe once a week and say useless things like “what do you regret not having done with your life?”

The goal I suspect was to figure out if some of these unfulfilled life goals could be completed. In reality the effect was to drive home how much of her life hadn’t been lived.

This night she was wild. I called the number that hospice had given, asking what to do. The nurse decided to send someone out to the house. That was a long wait, alone in the dark with someone who was hysterical and dying. Somehow things seem more intense at night.

When the nurse came, he talked with her and listened to her and he was just as confused by what she was saying as it was. It was as if she was having a waking nightmare. He gave her ativan, which is really valium. That did the trick. He left me with some and told me how to administer them to her when she got to the point that she couldn’t swallow.

We sat and talked for a bit, and I’m grateful that he saw that part of his field of care involved me. Often the caregiver is ignored in favor of the patient. Both have needs. This was a new and strange thing for both of us.

He said this – “People tend to die the way that they live.”

This has stuck with me all this time, nearly 20 years now.

He asked if she smoked cigarettes. Yes. That was what was killing her. She smoked for half her life, and I remember that she lit up a cigarette every twenty minutes. It had become such an addiction that she didn’t want to go to the movies because she couldn’t imagine an hour or so not smoking.

That is an addiction. That is a desperate need to relax using chemicals.

Being terminal is stressful. Dying at 53 is stressful. Having not fulfilled your life goals is stressful.

It would be a miracle if she learned how to deal with her emotions not using chemicals now. So she didn’t. She was on ativan until she died, as a substitute for nicotine.

I find it funny (not funny ha-ha) that she didn’t want to take her pain medicine because she didn’t want to become an addict, not realizing that she already was one. But socially accepted addictions are different, right?

If people tend to die the way they live, how will you die?

More importantly, how will you live, knowing that you will die?

Death sentence (or paragraph…)

You never know when you are going to die. Until you do. Then you start pulling yourself together. Then you start cleaning up and hunkering down. Then life develops a clarity it never had before.

But you always knew. You always knew that this day would come. This day, the day the doctor told you that you were going to die. How long do you have? Three months? Three weeks? Three years?

Perhaps your first clue that you were mortal came from when your parents died. You were young, just out of college. Or you were middle aged, with children of your own to manage. You didn’t have time then to deal with it, but you did. You somehow managed to work in the extra work that is involved in handling an estate. You just did it, because it had to be done.

Perhaps your second clue came when you found that spot – that spot that made you go to the doctor. You thought it might be cancer, and you started wondering what you were going to do, how you were going to manage. You found out it was something simple – for now. It could be cut out or burned off or you could take a course of medicine and you were done.

But now, now there is no turning back. Now it is for real. You’ve had your second opinion. You’ve had your third opinion. Now you can’t turn away from this because it is in your face and it is holding you hostage and you feel like you can’t breathe.

And all you want to do is live.

But that is all you have done. You’ve had your life to live, and you’ve wasted it. You’ve spent it up. You’ve decorated your house and gone to tea parties and read your books and that is it. What have you done that made a difference? What have you done that has made the world better? What change have you made? Who will remember you when you were gone? Whose life was made better because of you?

Have you spent your life for yourself, or for others? Have you been true to the person you were born to be? Have you really lived, I mean really?

Because there is a difference between being alive, and living.

You say you don’t have time, but that is all you have had. Too late now to cry about it. Too late now to feel cheated. The only person who has cheated you is yourself.

Wait. Here is a reprieve. They were wrong. For now. What will you do? Back to the same old habits?

Start, right where you are. Begin. Begin again. Renew. Revive. Reassess. Strip down everything to the bare bones. Look at now, and the future.

Where do you want to be? Start heading there.

Life is short. Death is coming. Be mindful. Be awake. Be alive, really alive. Live every day with intention and meaning. Leave nothing undone. Enjoy your food and your friendships. Work on that project you’ve been putting off. Make peace.

Because one day, there won’t be a tomorrow.

Instead of this filling you with fear, let it add savor to your life. Make it add meaning. Aim for your goals.

Prayers and stories I like

All of these prayers/poems/stories are helpful and useful. They are from many sources.

The Guest House
This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
~ Rumi ~

(The Essential Rumi, versions by Coleman Barks)

Rules for being Human
1. You will receive a body. You may like it or hate it, but it’s yours to keep for the entire period.

2. You will learn lessons. You are enrolled in a full-time informal school called, “life.”

3. There are no mistakes, only lessons. Growth is a process of trial, error, and experimentation. The “failed” experiments are as much a part of the process as the experiments that ultimately “work.”

4. Lessons are repeated until they are learned. A lesson will be presented to you in various forms until you have learned it. When you have learned it, you can go on to the next lesson.

5. Learning lessons does not end. There’s no part of life that doesn’t contain its lessons. If you’re alive, that means there are still lessons to be learned.

6. “There” is no better a place than “here.” When your “there” has become a “here”, you will simply obtain another “there” that will again look better than “here.”

7. Other people are merely mirrors of you. You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.

8. What you make of your life is up to you. You have all the tools and resources you need. What you do with them is up to you. The choice is yours.

9. Your answers lie within you. The answers to life’s questions lie within you. All you need to do is look, listen, and trust.

10. You will forget all this.

(I first read this half my life ago. It was on a copied piece of paper, posted on the fridge in a stranger’s house in the Washington DC area. Then I saw it again years later at a jewelry show in a dorm in Chattanooga. This has been attributed to many people.)

Here is an ancient Chinese story to illustrate an important point:

A Chinese gentleman lived on the border of China and Mongolia. In those days, there was constant conflict and strife along the perimeter. The man had a beautiful horse. One day, she leaped over the corral, raced down the road, crossed the border, and was captured by the Mongolians. His friends came to comfort him. “That’s bad news,” they said sadly. “What makes you think it’s bad news?” asked the Chinese gentleman. “Maybe it’s good news.” A few days later the mare came bolting into his corral, bringing with it a massive stallion. His friends crowded around. “That’s good news!” they cried. “What makes you think it’s good news?” he asked. “Maybe it is bad news.” Later, his son, while riding the stallion and trying to break it, was thrown off and broke his leg. “That’s bad news,” cried the friends. “What makes you think it is bad news?” asked the Chinese gentleman. “Maybe it’s good news.” One week later, war broke out with Mongolia, and a Chinese general came through, drafting all the young men. All later perished, except for the young man who couldn’t go because his leg was broken. The man said to his friends, “You see, the things you thought were bad turned out good; and the things you thought were good turned out bad.

The Prayer of St. Francis

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
Where there is sadness, joy.
O Divine Master,
grant that I may not so much seek to be consoled, as to console;
to be understood, as to understand;
to be loved, as to love.
For it is in giving that we receive.
It is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life.
Amen.

The Prayer of St. Theresa of Avila
Christ has no body but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
Compassion on this world,
Yours are the feet with which he walks to do good,
Yours are the hands, with which he blesses all the world.
Yours are the hands, yours are the feet,
Yours are the eyes, you are his body.
Christ has no body now but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
compassion on this world.
Christ has no body now on earth but yours.

Saint Patrick’s Breastplate
I bind unto myself today
The strong Name of the Trinity,
By invocation of the same,
The Three in One and One in Three.
I bind this day to me for ever.
By power of faith, Christ’s incarnation;
His baptism in the Jordan river;
His death on Cross for my salvation;
His bursting from the spicèd tomb;
His riding up the heavenly way;
His coming at the day of doom;*
I bind unto myself today.
I bind unto myself the power
Of the great love of the cherubim;
The sweet ‘well done’ in judgment hour,
The service of the seraphim,
Confessors’ faith, Apostles’ word,
The Patriarchs’ prayers, the Prophets’ scrolls,
All good deeds done unto the Lord,
And purity of virgin souls.
I bind unto myself today
The virtues of the starlit heaven,
The glorious sun’s life-giving ray,
The whiteness of the moon at even,
The flashing of the lightning free,
The whirling wind’s tempestuous shocks,
The stable earth, the deep salt sea,
Around the old eternal rocks.
I bind unto myself today
The power of God to hold and lead,
His eye to watch, His might to stay,
His ear to hearken to my need.
The wisdom of my God to teach,
His hand to guide, His shield to ward,
The word of God to give me speech,
His heavenly host to be my guard.
Against the demon snares of sin,
The vice that gives temptation force,
The natural lusts that war within,
The hostile men that mar my course;
Or few or many, far or nigh,
In every place and in all hours,
Against their fierce hostility,
I bind to me these holy powers.
Against all Satan’s spells and wiles,
Against false words of heresy,
Against the knowledge that defiles,
Against the heart’s idolatry,
Against the wizard’s evil craft,
Against the death wound and the burning,
The choking wave and the poisoned shaft,
Protect me, Christ, till Thy returning.
Christ be with me, Christ within me,
Christ behind me, Christ before me,
Christ beside me, Christ to win me,
Christ to comfort and restore me.
Christ beneath me, Christ above me,
Christ in quiet, Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger.
I bind unto myself the Name,
The strong Name of the Trinity;
By invocation of the same.
The Three in One, and One in Three,
Of Whom all nature hath creation,
Eternal Father, Spirit, Word:
Praise to the Lord of my salvation,
Salvation is of Christ the Lord.