Rainbows Happen - Thoughts on Living and Dying

Don't forget you

If there is a problem that helpers have it is that oftentimes they forget themselves. They get so busy taking care of others that they go down the tubes. Part of it is the phenomenon that says if I am helping others deal with problems somehow that means I should be able to handle all of my stuff also. It's like when doctors think they can't get sick because they are . ..  doctors. And to be honest with you there is nothing worse than going into a setting with helpers, it might be nurses, or counselors, or social workers and they are fried, or angry or defeated. Sometimes the staff morale totally sucks. And sometimes they look at me like I'm the enemy. Who the hell am I coming into this organization and talking to them? They know the drill. Some of them have Ph.Ds like me or have been a helper for a gazillion years so they have "heard it all." Some of them will sit back on the chair almost defying me to help them. The thing that saves me is that I don't care. Now I don't mean that in the most negative sense. I mean it in the "I am not going to be attached to the possible outcomes of my presentation." If somebody wants to stay miserable they win. If somebody is finally tired of being miserable then maybe I can either give them a few new ideas, or remind them of ones they have misplaced, or maybe just take a little different stance on some old ideas. Let's face it. All of us can get sucked into being miserable. We're especially vulnerable when we've picked up some bad habits, which I will talk about in later posts, or when we are exhausted and we fall back to old ways of thinking, or maybe we have let the onslaught of misery around us wear us down.

Whatever the reason helpers must remember that being a helper is not a vaccine. We need to take care of ourselves. We need to ask for what we want. We need to stay aware of old habits creeping back in. Helping others is probably the highest form of human interaction. We can't do it if we don't help ourselves.

A Woman's Fight for her Life - Some thoughts and a poem

I wanted to share a poem I wrote many years ago about a young woman, Robin, who was very sick and eventually died from cancer. When I first met her in the hospital I could tell that she was thinking about suicide so , I think to her surprise, I said that I thought she was thinking about killing herself. She said very quickly and very defensively, "Why not? While I can still do it and save myself a lot of misery." I think she expected me to say that she didn't really want to do that or to somehow argue that it was wrong or whatever. All I said was that yeah I could understand that logic but that though her prognosis was pretty bad her present state wasn't that bad so she had a little time before following through with that thought. And that maybe we could just talk about what was going on with her.(She eventually thanked me for my reaction.) As it turns out she was really down on herself. She thought she had been a failure in her life. She was only ( I think) in her 20s and she felt she hadn't done anything well. She had screwed up relationships and on and on. She had one failure story after another. Again I didn't argue with her.

I did challenge her though. We started looking at everything she could think of in her life and lo and behold we started finding some things that even she had to admit were pretty good. We started exploring the incredible relationships she had with her mother and step father. We looked at all the friends she had. Were they all really just stupid I joked? Maybe one or two you could write off, but she had to admit that maybe she had some qualities that drew people to her. We really formed a wonderful relationship. I never met anyone quite like her. She changed everything around. She lived her life like no one I had seen. As sick as she became, when I would go in to see her she radiated life. As she got to the end she knew that the end was near and accepted it. One of the doctors accused her of giving up and really tore into her. When I went to see her and told her I had heard what happened she just laughed. She said that he had ripped her a new one but that it was OK because he had problems with "failure" and she didn't consider dying a failure.

We had talked about camping during one visit. She said she loved it and I said I was a clutz when it came to camping. A couple of days after she died I came back to my office and sitting on my desk was a book about camping that she made sure I would get after she died. I still tear up just writing that. Robin was a wonder. Here is my poem to her

                                                                         ROBIN

She came to the end
with herself
She fought for that
She deserved it

Her body broke away
Slowly
Painfully
Relentlessly

But her eyes said "I'm here."
"I'm tired
but I'm here."

Early in the dying
was the question
Why not now?
Before I hurt
Before I lose
So much
And know it.

But her eyes knew/
Not yet.
There were questions,
Answers,
Endings yet to be.

The voices in white said
"Try this - Try That."
Robin tried this
Tried that

The voices in White said
"One more treatment."
"One more drug."

Robin nodded
"Do what you have to.
So will I."

The voices in white said/accused
"You're slacking off.
Try harder."

Robin sighed.
The voices in white
Didn't see her.
They saw her cells
They saw her cancer.
But they missed Robin

They couldn't cut Robin
Probe Robin, Radiate Robin
Only cells.
So they weren't interested
In Robin
Only cells.

They should have looked.
Robin was there
Fighting for her life.
Not her time -
Her life.

Longevity was not the issue.
The future was not the problem.
"Did I count?"
"Was I real?"
Validation - The past
They were the issues
They were the problems.

The body retreated
from life
But the spirit fought
for answers.
"Did I feel?" "Did I matter?"

And still the voices in white kept coming
("Sorry about those side effects.")
And the pain kept coming
And the frustration kept coming

The answers to the past
were not to be found
in the past.
The present kept intruding
Often ugly. Always insistant

But the answers were there -
In the present
Past the Pain, the frustration
The voices in white

They were found in a mother's
presence. A father's support,
A stranger's friendship.
But most of all In the search itself.

It seemed so simple
There was only the present.
She loved in the present.
She was loved in the present
She mattered
She was real.

She came to the end
With herself
She fought for that
She deserved it.

Forget "dying" You're either living or dead

When Judy, who I have mentioned from time to time was given six months to live and is still going fine after thirty years, and I wrote our books ( one was originally called "Cancer and Hope" and is now called "The Healing Journey" and the other is "I Will Live Today"), we agreed that we wouldn't use the word dying. We weren't doing this because we were being "sensitive", but rather it was because we agreed that dying was a worthless classification. Dying is living with a focus on the end result, which in that case means we are all dying if all we focus on is the end. Of course you might be sick or injured or incapable of doing things you used to be able to do, but you are still living. When you aren't living anymore you will be dead and on to the next adventure.

Now that might sound like I am saying the obvious, but I don't think so. I have seen many, many people who are not doing well physically focus on "the end" and miss everything they could have taken in that might have helped their spirit. It's understandable. We worry about the future all the time, even when we are healthy. And let's face it, when people are seriously ill or injured the present sucks. There's tubes and pains and disappointments and fractured dreams and on and on. And there's no doubt about it, it's easy for someone who is feeling fine to say, "Oh just find the good things." In fact saying it glibly at that point is actually stupid, but that doesn't mean that their is no truth behind the statement. I have seen people find moments of respite and joy in the midst of really bad situations. They were not just fighting to live a longer life, but a better one - right now - even when things were going poorly.

Carve out moments for yourself, even if they last for only seconds, that resonate as joy within you. But let me warn you if you haven't already experienced it, if you are ill or injured and have been in a bad place emotionally and you try this, at first you might find that joyful moment but then have sadness quickly follow because you don't think you will have that moment much longer or many more times, or that you can't appreciate it like you used to when you were healthy. Let that feeling pass through you like crap through a goose, because that's what it is - crap. If you let it stay it will stink up your life worse than it is. And the nice thing about it is you are the one in charge of that - as hard as that might be to believe. Fight for that joy. If you are alive you can define your reality. Forget focusing on dying. We all will be dead someday. But that's someday. Just make sure you make these moments that you are alive today count. Let your friends and loved ones help you. I know. . . easier said than done, but as I like to say, "Difficult is not impossible. It's just difficult."

Embracing the Mystery

Part of the sub-title of this blog is when you've lost your way. I feel like that sometimes. I go to www.williamedelen.com for some of his delicious thoughts. Here is one, not written by him, but shared by him.I think it cuts to what I believe or at least try to believe. There is a mystery. Enjoy EMBRACE THE MYSTERY by William Edelen January 6, 2008

When all the words have been written, and all the phrases have been spoken, the great mystery of life will still remain. We may map the terrains of our lives, measure the farthest reaches of the universe, but no amount of searching will ever reveal for certain whether we are all children of chance or part of a great design. And who among us would have it otherwise? Who would wish to take the mystery out of the experience of looking into a newborn infant's eyes? Who would not feel in violation of something great if we had knowledge of what has departed when we stare into the face of one who has died? These are the events that made us human, that define the distance between the stars and us. Still, this life is not easy. Much of its mystery is darkness. Tragedies occur, injustices exist. Bad things befall good people and sufferings are visited upon the innocent. To live we must take the lives of other species, to survive we must leave some of our brothers and sisters by the side of the road. We are prisoners of time, victims of biology, hostages of our own capacity to dream. At times it all seems too much, impossible to accept. We must stand against this. The world is a great mysterious place, and it's possibilities are infinite, governed only by what our hearts can conceive. If we incline our hearts towards the darkness, we will see darkness. If we incline them toward the light, we will see the light. Those of great heart have always known this. They have understood that, as honorable as it is to see the wrong and try to correct it, a life well lived must somehow celebrate the promise that life provides. The darkness at the limits of our knowledge; the darkness that sometimes seem to surround us is merely a way to make us reach beyond certainty, to make our lives a witness to hope, a testimony to possibility, an urge toward the best and the most honorable impulses that our hearts can conceive. It is not hard. There is in each of us, no matter how humble, a capacity for love. Even if our lives have not taken the course we had envisioned, even if we are less than the shape of our dreams, we are part of the human family. Somewhere, in the most inconsequential corners of our lives, is the opportunity for love. If I am blind, I can run my hand across the back of a shell and celebrate beauty. If I have no legs, I can sit in quiet wonder before the restless murmurs of the sea. If I am wounded in spirit, I can reach out my hand to those who are hurting. If I am lonely, I can go among those who are desperate for love. There is no tragedy or injustice so great, no life so small and inconsequential, that we cannot bear witness to the light in the quiet acts and hidden moments of our days. And who can say which of these acts and moments will make a difference? The universe is vast and is a magical membrane of meaning, stretching across time and space, and it is not given to us to know her secrets and her ways. Perhaps we were placed here to meet the challenge of a single moment; perhaps the touch we give will cause the touch that will change the world. Author Unknown

The Bravest Person I know

Let me tell you a story about my sister. She is a couple of years younger than me and just turned 60 last month. She has been dealing with a brain tumor and its repercussions for close to 17 years. She was and still is an incredibly beautiful woman with a sarcastic sense of humor that I just love. A sense of humor that she refuses to lose. Her first warning sign was a grand mal seizure in bed. Of course her husband didn't know what the hell was going on. He tried to put something in her mouth and that almost proved disasterous. They had three kids at home at the time. It was nuts. They got the ambulance, and even though she had come out of the seizure she obviously was confused. She insisted on taking off her jersey she slept in - which is now on ongoing joke about her exhibitionist tendencies.

When they got her to the hospital they discovered the tumor and when they were going to take a biopsy they first had to stabilize her head but the novocaine (or whatever it was) didn't take on one of the screws but they had to finish drilling anyways. The tumor was too entwined in the brain to take out surgically. They eventually did radiation therapy that saved her life but later has come to plague her.

Even with the tumor partially removed she still suffered seizures so they had to screw around with different medicines to try and control them. As it turns out, most of us seem to metabolize these drugs at different rates at different times.Sometimes I would talk to her on the phone and she sounded drunk because she wasn't metabolizing the drug fast enough but the next day she might have a seizure because she metabolized it too fast. Her sense of humor remained. Eventually they figured it out enought so it that she could go back to work running an office in the state govt. of IL. Slowly but surely things started going down. The tumor came back and they gave her some chemo that after only two treatments almost killed her. They really got scared that her white cell count wouldn't come up. It finally did but very slowly and it really knocked her out. It did stop the tumor but the seizures were still around. Her sense of humor remained.

They opened her up and put something in her chest similar to a pacemaker that was supposed to sense when the brain was going to trigger a seizure and would then disrupt it. It didn't do much. They decided after a few years to take it out. Unfortunately when they were taking it out during surgery they nicked her vocal chords basically paralyzing one of them. If your vocal chords are screwed up in that way it can make eating a life threatening experience. So to fix that they had to cut her throat, with her being conscious, and insert a wedge between the chords so she could swallow. But she had to be conscious to test it out. She sounds like a 90 year old person but she can talk and eat. Her sense of humor remained.

Then she fell down and the doctors realized that her bone density was next to nothing partly due to the medicines she was taking, by now a massive amount. In fact when she went in to see the doctor he just put his head on his arms because he had tell her the bad news. Then her balance went. The doctors said it was the after effect of the radiation that saved her life. She was put on a walker. Her sense of humor remained. In the early stages of the balance problem her husband, who by the way is a saint, and her son who was visiting each had an arm as they were going somewhere. Somehow she fell from their grasp and flattened her nose. Of course they were mortified and she kept her sense of humor.

Much of the time she is by herself as 2 of her kids are out of town and the other is working. Her husband owns a business. Many of her friends dropped the ball and weren't showing up to spend time with her. Then she started to become disoriented and losing her mental faculties. The doctor said it was the beginning of the end. Her brain was shrinking he said. Even though they really didn't want to, my brother in law put her in a nursing home - a very nice small one with a lot of attention. My sister was aware enough to know she wanted to go home. This is the only time her humor left for a bit. The first time I talked to her when she was in the home she was crying. That's when I lost it. I don't think I have ever cried like that on the phone with her. What a help I was Mr. Phd and expert in death and dying. She got it back together and even joked about our crying conversation.  They put her in hospice. (She didn't know she was in hospice.) But a funny thing happened. When they started cutting back on all her meds she got better. She was discharged from hospice. (You don't see that a whole lot.) I guess the doctor who saw her brain shrinking missed the other possibility that nobody was keeping track of all the medicines and their possible interactions.

When my oldest dtr. got married a couple of years ago my sister and one of her kids came to the wedding. I got on the stage at the reception and said how happy I was that my sister, who had previously been in hospice and then discharged, was at the wedding. Later her daughter was a little concerned because my sister had never known she was in hospice. That's where both of our sense of humors came to the rescue. When she asked me later about being in hospice I kidded her to get over it, and that how many people did she know from hospice who were now alive and not in hospice. She thought about and started to laugh. She still is on a walker and fighting for herself, but her sense of humor is still as strong as ever.

One last note. When I tell her husband that he really is a saint for sticking in this all the way while working like a dog to keep his business alive, he looks at me like I'm nuts. "That's what you do when you love somebody." I am proud to be her brother and his brother in law.

Give support not platitudes

There are a lot of platitudes out there that have a lot of truth in them. Most of them have to do with being a positive person - "An attitude of gratitude" - " See it as a challenge instead of a problem" - "Say thank you every morning for waking up." I don't have a problem with any of those thoughts.

However, if someone is in the middle of a crisis, whether it be health related or not, and they are struggling to stay on top of the problem and perhaps not doing too well at it, they don't need to hear a platitude. A platitude, during a crisis, distances the person saying it from the person who is supposed to benefit. A platitude, almost by definition, is meant to be taken in by groups of people and thought about and perhaps debated. It is not a personal reaching out as such. So when a person needs a personal reaching out, perhaps they are scared or angry or frustrated, reach out with your heart and hands not with your platitude book.

Many times people know those platitudes and probably agree with them, but right at the present they are not pulling it off very well. They might even be berating themselves, "I should be handling this better," "I know better than this." When they are in that state the platitude almost sounds like a reprimand. Sometimes people say platitudes because they don't know how to help with the problem the person is facing. If you are with someone who is seriously ill or who has lost a loved one, it can be scary to think that you are supposed to do something helpful when you don't really have a clue what to do. The platitude becomes the easy way out. Don't fall for the trap. You might say, "I wish I could do something specific to help you, but I don't know what it is. But I'm here with you and I'll support you as best as I can." Or maybe you can ask, "How would you like me to help?" Maybe what they want you can or can't do and you can respond to that, but at least you are making a gesture, a real gesture of support. If a loved one or friend is in a crisis be a helper, a supporter, not a lecturer or preacher. Let your humanity shine through.

I'll be inside your smile

This is a piece of music I wrote originally for people who had lost loved ones in Iraq. Then I wanted to send a copy to the family of the kids who died in the bus accident on their way to spring baseball in Florida. Then I put the pictures of the VT kids who died last year on with the song.  Now there is Northern Illinois and close to where I live the shooting in Kirkwood. It's just sad.

Noticing the "little" things when you are ill

When you are struggling with a serious illness or injury and cannot do the things you have been used to doing, you can either stay stuck mentally and emotionally in that situation, or you can find other "little" things that keep your life meaningful and moving forward. There is no getting around the fact that the situation you are in is very sad, and/or frustrating, and/or frightening. People who say glibly - thinking they are making everything better, "Oh, it'll be OK." just don't get it. It takes more than just a feel good statement to make things better. If you want to, you can make a great case for being miserable. In fact, that's the crux of this article. You have choices to make. There are things that have happened to you that you didn't ask for. But here they are.

The choices you make now will go much farther toward determining your future than the events you have experienced. When I say to notice the "little" things, I deliberately put little in quotations because that is such a relative term. I mean these "little" things could be something you might have overlooked earlier before the sickness or injury happened. They aren't little at all. It might be smells that trigger wonderful, comforting thoughts and memories. These "little" things might be just noticing the way the sun comes through the tree in front of your house or how nice it is to really listen to some music and give it your attention. You will determine if these "little" things become powerful, positive "big" things or whether they fall into the category of "Who cares? My life is screwed."

Notice the little things and then embrace them. They won't be little anymore.

Repetition Deadens Awareness

The more I see you, the less I see you. If you are honest you know that that happens all of the time. There you are again sitting in the same chair for breakfast, sleeping on the same side of the bed. Pretty soon if I'm not careful I don't really see you there.

We drive the same way to work everyday, pretty soon we really don't see the surroundings. Somebody might ask you about the big construction project in your area. You don't even know what they are talking about even though you drive by there everyday. The only problem is you quit seeing things about five years ago.

When somebody says they know their spouse like the back of their hand, they are really saying that they don't look anymore. How many of you look at the back of your hand? The only time you probably look is when it itches. We start really looking at our loved ones when we find out they are sick or in danger.

On 9/11 what were the people doing who were in those building and on those planes? They were calling the people they loved. I'm sure that many of those people had been very good at telling their loved ones that they loved them and I'm sure that some of the people had not been so good at it. But there can be no doubt that when it became apparent that their lives were in jeopardy the intensity of their feelings for their loved ones increased dramatically.

Don't wait until you find out you or your loved one is sick or in danger. That's not a rule. It doesn't have to be melodramatic or a major expense. It can just be a touch or a brief comment or a quick call. Get in the habit of thinking renewal rather than repetition. Routines turn into ruts and the only difference between a rut and a grave is the depth. Don't let your relationships fall into that grave.

Keeping your spirit alive through physical problems

I'm not very adept yet at understanding the blogging world. I did a few a year or two ago and then forgot about them. I am going to get out there again and thought I would republish some of my earlier ones so that someone might pick up on them now. I'm not sure if I'm being needlessly repetitious but oh well. My friend Judy Garrison, who was given six months to live over 30 years ago and is still doing fine, and I wrote a couple of books for people with serious illnesses or injuries. The book, "I Will Live Today," is a book of short affirmations for people to lock in on when they are struggling with illness or really any difficult situation. Much of what is in the book came out of not only what Judy learned from her own situation but what both of us learned by working with people in life threatening situations.

I then took some affirmations from the book as well as a few more I came up with and put some music behind it from Wagner. I have had many people tell me how much it has helped them keep going. It really is a spiritual approach to dealing with life, though as I say on my web site spiritual can mean many things to many people. I have done my best to keep it such that any person's belief system can benefit from this presentation unless he or she only wants to hear one thing only. If that is the case I probably don't have that much in common with you anyways. If you would like to see some thoughts on keeping your spirit alive while coping with serious illness, injury or just very stressful circumstances go to www.youtube.com and then put sctshep in the search box. A bunch of music things I did will come up including the one on dealing with serious illness.