Rainbows Happen: Thoughts on Living and Dying

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.

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.

Embrace the Mystery by William Edelen

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

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."

A woman's fight for herself - 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.

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.

Reducing stress idea - Don't facilitate crap

Most of us have been raised to facilitate conversations. Little things like nodding the head or saying, "you're not kidding," or "that must have sucked," or "I know what you mean." These things all imply that you want the person to keep talking. It's hard to break that habit but break it we must if we want the perpetual bitchers to shut up.

Now don't get me wrong, a direct "Shut up," has its place but I really think it should be a last resort. Just don't facilitate misery or crap. Don't give eye contact when the same old b.s. is coming down the pike. When they're done with a line or two or twenty of bitching, change the subject. Don't even link the new subject to whatever the person said. Just change the subject.

One of the nice things about short attention spans is that many times the person will just go with you. They'll forget what the hell they were talking about. I once had a second year teacher tell me she would have rather had lunch outside, naked, in a windstorm than eat in the teacher's lounge where she worked. I have always thought that wouldn't it be nice if the bitcher was the one leaving the room. I'm not against just telling the person who is the perpetual bitcher that you would rather not talk about that stuff. That's probably the most mature, adult thing to do. And it probably will blow up in your face. If you want my opinion save that for the second to last option before "Shut up."

You're probably thinking that would be great if it wasn't for the fact that almost everybody is a perpetual bitcher. Even though it seems that way sometimes, I don't really think that's true. I think that for many people it is just a habit and if one or two people keep changing the direction into something beyond bitching many people will follow. And if they don't change, don't bitch to me about it. I'll be talking about that great sunset I saw.

www.mystresscoach.com

Perhaps the root cause of stress. . .

Dr.Rachel Remen wrote in her book My Grandfather's Blessings, "Perhaps the root cause of stress is not overbearing bosses, ill-behaved children, the breakdown of relationships. It is the loss of a sense of our soul. If so, all the ways in which we have attempted to ease stress cannot heal it at the deepest level. Stress may heal only through the recognition that we cannot betray our spiritual nature without paying a great price. It is not that we have a soul but that we are a soul."

What a powerful perception. I have thought for a long time we have trivialized the whole concept of stress, especially with the "manage your stress" mantra. I keep saying that going to a class to learn how to manage your stress is like going to a class to learn how to be organized with your misery. We need to rethink our approach not just to stress but to life itself. I agree with Remen. Stress is more than just stuff out there. It is deep and it is profound. And it isn't about turning into a fundamentalist "whatever". I hate that we seem to get stuck in the idea of either/or. I don't believe reconnecting to our soul means we have to believe any particular religious dogma. If it helps fine, but it isn't necessary in my opinion.  And we can talk about psychological things and behavioral things we can do to help us with our stress. I do that all the time and I think they can be helpful. But if that is all we do and we neglect our spirit, our soul, we are like a technically great concert pianist who just doesn't seem to "get it" on the deeper level.

I think what we need to do is put the fragments back together. We are a soul that has splintered.We are Humpty-Dumpty and we are looking for "all the kings' men" - the superficial cures - often cloaked in psychological and religious terms to put us back together again. We seem reluctant to do the work ourselves. This work, I believe should be on rediscovering our integrity. Most of us think of integrity in relationship to the idea of being an honest person. But there is a much deeper meaning. Integrity refers to a wholeness. It is about being whole, of putting our pieces together, of being honest and true to ourselves.

Feeling tense, harried, put upon etc. is not what stress is - at least the stress that I, and I believe Remen are talking about.  It is about being fragmented and not knowing which way to go. Because we are fragmented we have lost our way. And what makes it worse is that there a lot of people out there who will tell you they know the way - - for sure - - no doubt about it. You don't have to think anymore or explore. Just follow like sheep. In fact if someone gives you suggestions and they begin with "Just". . . start running away - Just stay positive. Just let go and let God. Just believe in yourself. You don't have to turn into little Sigmund Freuds, but you have to be willing to get involved in your life. And getting involved is more than a "just." You have to be willing to experience your life. You have to be willing to be open so that you can experience your life. Someone once said that the most important thing we can do is wake up. Perhaps waking up will help us put our soul together again. Perhaps.

Whining our lunch away

You sit down at lunch and somebody joins you. Within about 10 seconds what are most people doing? Bitching! People love to bitch. Have you ever been to lunch and people are "one-upping" each other? "You think your morning was bad? I'll give you bad." I have seen people leave the lunch room basically going, "I won lunch!" We get off on suffering - not 9/11 or cancer suffering but the day to day grind. "You don't know my boss." "Oh my god it was a nightmare today."

What we love to say now is that we were "venting." "Oh, it's good to vent. If you don't get it out it just eats away at you." Well if you are going to a counselor then it is good to get it out and WORK ON IT! But most of the time when we vent we just get it out and then put it back in for tomorrow. We don't do squat with it of any use. Would you like it if somebody came up to your lunch table every day and threw up on it? I would imagine that wouldn't go over very well and when you saw the person coming you would say get away from here. And if they said that they always felt so much better when they threw up you would probably encourage them to go to another table. "Feel better over there." When people are bitching they are throwing up on each other. It's a gross description but we have to see it that way to start thinking about stopping it. "Venting" doesn't sound so bad. "Vomiting" doesn't sound so good.

But it takes courage to stop the bitching and whining. If you don't think so, next time you're at lunch and everybody is doing it, you be the one to say, "Hey come on. Let's not be negative today. Let's be positive." And watch your friends turn on you like sharks at a feeding frenzy. "Ohhh. Mother Theresa's alive." You know they'll go for your throat or at best think you're just nuts. Bitching is entrenched. Don't go there. Change the subject. Eat alone. Don't just follow. Here's a little song I wrote about it. See if it resonates.

There is no stress "out there"

How many times did you hear during the holiday season about how stressful the holidays are. "Christmas just drives me crazy." This all comes from our distorted belief that “stress” is somehow “out there” in the world and not a result of our thinking processes. Stress is a word that supposedly reflects a physiological state whereby certain hormones are kicked into the system affecting certain organs. Nowadays stress is this nebulous force out there in the world. We are “under stress” and “coping with stress” and dealing with “stressful jobs” and “stressful holidays.”

Stress isn’t out there. All that is out there are situations. They might be situations we like or don’t like, but whether we have this adverse "stressful" physiological reaction happening in us depends on how we think about those situations. Now I know you’ve heard this before. There are a lot of writers and speakers who sort of talk the talk – that we must be responsible for our lives etc. But when push comes to shove they still talk the talk of victims. “How did that make you feel?” is a favorite question of parents and counselors. They think they are really doing a good job of getting to your feelings. The only problem is that the question implies that the event totally controlled your reaction. Wrong. Or here's one, "Stress is part of life. The only people who don't have stress are dead people." The first time I heard that 30 plus years ago I thought, "There's a hell of a choice. Stress or dead." It's a stupid statement.

I have worked with people in all types of tragic circumstances including people who have had their children murdered. Some people stay angry and hateful and bitter, and they obviously can make a good case for that. Others however choose not to go in that direction. One person told me and a group of survivors I was talking to that it finally dawned on him after waking up every day for ten years and hating the person who killed his daughter that she deserved better than that from him. He said that she hadn't lived all those years just for him to hate someone.

Power is about choices. If you don’t see the choices you don’t see the power.

If you are going crazy around the holidays, the odds are you are trying to meet some type of expectations either from others or from yourself. But don’t get me wrong. If you start defying those expectations you will get some flack. Count on it. However if you don’t make changes you will eventually be a reflection of B.B. King’s song, “The Thrill Is Gone.”

I guarantee you though, that if you keep blaming the holidays or your boss or your car as stressful you will be stuck until you die. However if you start to accept some responsibility for your inner life, you will begin to see that the way you think is triggering most of your stress response.

I realize that changing the way you think is very difficult. When I speak about this at my presentations I sometimes have people say, “Easier said than done.” Well, duh! It is easier said than done. But difficult is not impossible. It’s just difficult.

If you are tired of your holidays being a mess, make different choices. Just because you're screwed up don't blame Christmas. Don't get me wrong this isn't Dr. Phil just saying "Get over it." This is hard to do. The first time you do this your holiday or your marriage or your life in general still might not be great, but you will start to feel a certain sense of power coming back. Take back your holidays. Take back your life.