The Post Partum Blues

[HAP]

Dear friends,

Sometimes the work I am doing just consumes my soul. For the last several weeks I have been working with a group of people on a press kit for Worldwide Neuroendocrine Tumor Cancer Awareness Day--which is today and has events continuing through the weekend. I've written press releases and columns and fact pieces, played boss and diplomat and editor.

We are giving the stuff away to anyone who wants it. I wrote to every newspaper in the country I could find. I wrote to wire services and television networks. I wrote to radio stations.

The local weekly shopper a former student runs will use some of it next week. The Women's Journal for the region will print one article next month.

And other than that, the silence has been deafening. I picked up the local papers this morning: nothing. I listened to the radio news, watched the TV news: nothing.

Six newspapers in the whole country did anything on NET this morning. None used what we had written. And god knows if we had anything to do with them doing stories at all.

I am disgusted. Plenty on JoPa though.

And it doesn't help that Jane died 11 months ago today; that 12 months ago today was the last day that even resembled sanity for either one of us; that twelve months ago tomorrow we made our last trip to Dana-Farber; that twelve months ago tomorrow I had to carry her up the stairs for the first--and only--time because she could not climb them when we got home; that twelve months ago Sunday I had to help her off the toilet for the first time; that twelve months ago Monday she got in a wheelchair for the first time--and would never again walk more than three steps; that twelve months ago Tuesday she would have heart surgery that would last nearly 11 hours.

And all this because she had a rare form of cancer the government stopped funding research on in 1968. We have no diagnostic tools to find it other than by accident before it becomes incurable because of a budget ax thoughtlessly wielded--and because no one thought about it again at the federal level until 2010.

I went to the cemetery this morning. I put carnations on her grave. I held it together long enough to put the three pebbles on her grave--one for each of our two souls and the single body we now have between us. I stood there like a fool in the cold, soaking rain with the tears streaming down my face. I heard her voice telling me to get the hell out of the rain--but I ignored her. Crying is supposed to make me feel better. Usually, it does. But not today. Not today.

Because I know that somewhere out there there is another couple going into the same situation Jane and I did a year ago.--and I have not done enough in that 11 months to give them any better chance at a better outcome than we had. Most doctors are nearly as ignorant now as they were then about the symptoms--or even the existence--of the disease. Most people still don't have a clue the thing exists. I know Rome was not built in a day--but I want this Rome built in a day. I know where the current road leads. I know what it feels like to watch that hideous decline. I know what that spouse is going to feel at the end.

Everyone dies. I can't change that. Half the population is doomed to experience the emptiness I feel every day. I can't change that. But surely there are parts of ignorance I can change that will make things better for others. I just need a lot more help than I feel like I am getting from the people in the news media. Surely death by cancer should be marginally more important than JoPa's firing.

I will keep trying to do the right thing. I will keep lighting these candles in the hurricane. It is what I do--what I have always done. And I cannot afford to give up today--or tomorrow. There is no rest for the weary just this very now.

But I can afford an hour to vent. And I can afford a few minutes to weep.

And the gods and powers would be well advised to stay out of my path for a bit for I am in no mood to be trifled with. And they have much to answer for.

Thanks for letting me rant.

Peace,

Harry

[marsha]

I think you've done a wonderful thing, Harry. If even one person reads what you've written, hears what you've said, understands and...that this can help, that's one person you've reached. My husband died of a rare cancer as well, cholangiocarcinoma, bile duct cancer. Almost no symptoms, and by the time it's diagnosed (and especially if it's spread, like his did), it's 6 months or less to live. I know you're feeling angry and consumed by sadness. Be gentle with yourself - a seed sown can grow. Hugs, Marsha

[terp8r]

Harry, you may never know who your story has helped. Perhaps a friend of a friend of a friend who read one of the many things that were sent out. I understand today was a very sucky day for you and I'm thinking of you with much concern and hopes of a little peace creeping in perhaps tomorrow.

Love,

Pam

[Dwaynecg]

Dear Harry,

You are a great man, and Jane is very proud of you today, even though the media outlets, only like to push all the negative stories anyway. So do not beat yourself up over it. It is not something that you can control.

As far as 11 months today, my heart goes out to you. Harry in a way you were lucky. I had to help Pauline in and out of bed, in and out of her wheelchair, on and off the toilet for over 2 years, so 1 month I know it is something that was hard for you to see and do, because Jane was so full of life, and lived life to the fullest everyday. But one month doing those things, probably impacted you more, than it did me, because I knew years in advance what and how the MS would progress in her, so I was ready in my mind to do anything and everything I could do for her. That is what, drives me to become a nurse. I had the good teachers in all the nurses that had to come over all those years. In the year 2000, I had to take off work for 6 months to do IV treatments on Pauline twice a day. I know what you went through. I lived it everyday. Find some peace Harry. You know where I am and you can call anytime. I will always be here for you my friend.

God Bless

Dwayne

[mfh]

Harry, your frustration and pain are so raw and understandable. So many anniversaries at a time when the world is not hearing you scream about this awful form of cancer. They like the sensational and glitsy....it sells as you know. But you may have touched many lives in your effort and you never know if one of those letters touched someone. I know you would like to see every form of media grab on but...well they won't. I hope your find some peace in all you have done and will do. You are doing the right thing.

Peace

Mary mfh

[kayc]

Harry,

You are an amazing writer...if they could only read what you've written here, it combines the need with the fact that these are real people, real situations, with real families left behind with the gaping holes in their hearts. It hits home and strikes the chord inside...the one that needs to be struck.

I don't know if lethargy exists because people are on overload and can't handle one more thing, if when it becomes uncomfortable they hit an "off" switch, or what. But it's very disheartening when the government can be in "ignore" mode for 43 years! It's discouraging when after all of your efforts, the media does nothing to sound the herald! All you can do is keep trying in the hopes that someone, someday, who has the power to make a difference, will listen and carry the message where it needs to go.

I feel the anguish as you hit the milestones and near the one year mark. These "11 months since" or "one year since" will forever be etched in our hearts and brains. I too have my milestones, and they come and go silently as others go on about their business, but my life is forever changed because of them. They remain huge, monumental, to me, but to others, the days pass unnoticed...amazing, isn't it!

[MartyT]

Harry, my dear, in your post you sound so disappointed and discouraged, and I certainly understand why. As others have acknowledged, you have many reasons for feeling that way. It reminds me of a time I got all geared up for an interview explaining the value of grief support groups on a local television station; I did my very best and I had high hopes that the content would help lots and lots of folks. The video was supposed to air on the local ABC station in Phoenix, during that night's 10 o'clock news, but in the meantime the Arizona Diamondbacks won an important baseball game (it was during the World Series) and my interview got cut, literally left on the cutting room floor, never to be seen by anyone. I learned from that experience that sometimes, despite our very best efforts to "get the word out" about a very worthwhile cause, we get bumped for what may seem to us the most ridiculous or arbitrary reasons. Sometimes it's just bad luck.

I want to share with you the content of a video I happened to watch last night, entitled The Fallacy of Investing in the Outcome. The speaker is addressing an audience of business people, but his talk contains some Buddhist wisdom that I think applies to all of us. Basically he says that when we set out to accomplish something, we can get caught up in an "If -- then" mentality: If I work hard enough, do enough, then I will succeed and things will turn out the way I expect them to. But when we do that, he says, we lose sight of the fact that the outcome is outside of our control. If you did your very best, if you gave it everything you've got, if you did all you could possibly do to succeed, then the outcome really does not matter. What matters, he says, is the process, and that is what you must invest yourself in: Your passion exists in you, not in your project. If you succeed in your efforts, it's great. But even if you don't succeed, it's still great, because you just keep going. He used the example of a toddler learning to walk. At first, the child struggles to get up, to stand, and then to take a step. Over and over again, in the process of learning to walk, the child falls on his bottom ~ but he doesn't get caught up in his failure to learn to walk ~ he simply keeps on keeping on, because his focus is on the process rather than on the outcome.

Here is the link to the video, in case you'd like to watch it: http://www.ratracetr...he-outcome.html

[mfh]

Marty,

What a great video and a great website. YOUR words as well as this video remind me of last weekend at my silence mindfulness retreat. The principles applies to so much in life starting with meditation itself...starting over when distractions come as they do for everyone...all the way to goal setting, being in our grief or joy and finding our new normal...thanks so much.

Your story about your interview reminded me of the need I see for schools, especially high schools, to offer a required course on grief. Why it is not offered in every high school, college and community is beyond my imagination.

Mary mfh

[dave s]

Thanks Marty for the video, something i need to learn and retrain my thought processes especially in my new role in life now........Harry, keep at it, I can see your frustration........yet if you touch one life with your work and it is positive for them......then you have done something remarkable! Dave

[HAP]

Dear Marty,

Interesting. Something to contemplate, certainly. And a gentle reminder that while I am very goal oriented, I function best when I am truly living instead of just going through the motions. The only outcome that really matters is whether or not I have lived the moments of the work at hand rather than going through the motions of the work at hand.

That said, even when I have lived it all, there is a kernel of grief at the end of any project--successful or not. When that bit of life ends there is a certain pain I have to deal with--simply because it has ended and has become part of the past rather than part of the present. That this project ended in the midst of a grief storm brought on by more than its ending--but in that other ending of a far greater consequence--has multiplied the mood and its depth.

A wall begins with a single stone. To begin the foundation for a new building one must first dig a hole. I have spent nearly a year digging a foundation. I don't know how deep i will have to dig. But I have also begun to find the stones that will begin the next stage of that foundation. How many stones it will take, I do not know. But I will only find out by living each moment as life--as living. Sometimes in the last year I have lost sight of that idea and become one of the nine in ten who do something with their lives other than live. Easy to do when you have walked too closely with death for too long--or too intense--a time.

I am tired of convalescing. I want to get out of bed and go. But I also know I am not yet fully healed--not yet ready to live fully again however much I want to. Still some physical and mental and spiritual therapy to get through.

I have a student who is eight months pregnant. She is tired of being pregnant. I have another student who had knee surgery a couple of months ago. She is tired of the limited mobility. This amputation I--we all--have suffered, I am tired of. But just as the knee will heal and the baby will come in its own time, so to will I heal from this. I will not be the same as I was--just as they will not be the same as they were. And i can only hope that the person who emerges from this will be better than the person who began the process.

Peace,

Harry

[HAP]

Dear Mary,

The reason for not teaching this is at least three-fold. First, a teenager who has not lost someone is not receptive--and trust me on this, unreceptive teenagers in a classroom are really no fun at all. They believe they are immortal--and that their friends are immortal--and when one dies the pain is unbelievable. But before that instant they are in no state of mind to even contemplate the reality of death.

Second, such courses cost money--a thing in increasingly short supply--and likely to become even scarcer.

And finally, there is a limit to how much we can ask teachers to do--especially in the testing crazy environment we work in now. We can't keep adding onto classroom teachers' plates everything we want kids to know and do. Parents and society at large need to take some responsibilities somewhere.

That is not to say that there are not moments that we teach kids about grief. Every time a student or teacher or public figure dies tragically, the front line becomes the teacher in the classroom. I did it too many times to think about. But those lessons come at a high a price--both for the students and the teachers--the latter of whom have to put off their grieving so they can help the students survive theirs. Frankly, I spent too much of the last six months of my career trying to work through both my grief and help them to work through theirs to be entirely healthy.

A far bigger help would be if our society as a whole started dealing with death as a part of life. Sometimes I think even the adults believe they are immortal--and their friends are immortal. As a society we just don't understand death very well--or deal with it very well. I have been to funerals that made me very uncomfortable because of the ritual-like screaming of the women. But they seem to recover from those deaths far better and more quickly than I have. Part of me envies that uncontrolled wailing most of us would find discomfiting.

I agree with you that as a society we need to do a better job with helping people learn to grieve--and on he surface it would seem high school is a great place to do so. But we really can't take on another thing that will just become the center of another controversy. Sex education is a mess because as a nation we cannot agree either on what to teach or how to teach it. Peoples' religious beliefs get mixed into the equation and it gets worse. Grief would face many of the same issues. Bring up God and you are in trouble. Don't bring up God and you are in trouble. And the person who gets the blame is the classroom teacher we expect to be all things to all people all the time.

My father gave me a letter when I decided to become a teacher. It was from a course he took back in the late '40s in education. It took the form of a letter from the mother of a perspective teacher to someone who had offered her a teaching job. It chronicled all the problems the girl would face from long hours to lighting the stove in the morning. It concluded: "I can't see the difference between teaching and being a mule, except the mule gets to kick up its heels at the end of the week without anyone complaining. So no sir, my daughter is not interested."

If anything the task has become even worse in the intervening years. In those days all we had to do was teach the children to read, to write, to cypher, to know a bit of history and a bit of science. Today ...don't get me started. Adding one more little thing--and there are no little things--is just asking too much.

Sorry to get on my soap box, but teaching is a lot like grief: Everyone thinks they know what it is and how easy it is until they have to experience it for themselves.

Peace,

Harry

[mfh]

Dear Harry,

Everything you said makes sense to me. And I do understand the plight of the teacher after teaching school for 14+ years, I also do believe in planting seeds. No, we don't expect the kids to get it (heck most adults don't get it) but if we want society to change, to see death as part of life, to treat others who are grieving well, to do their own grief work, I think we need to seriously consider bringing it into our educational system. Our priorities in education (teach to the test, everyone has to have a liberal arts degree, and more) all need to be examined closely. When and where does a kid learn how to handle money, grieve a loss? I remember the sex ed battle...I was in the middle of it believe me (as a teacher) and I do get it----teachers are soooo overwhelmed and kids are different now as are the parents and society...but imho I think the whole system needs to be revamped and include life skills to a greater degree....

Planting seeds is a worthwhile venture.....how many times have we as adults seen something come to fruition in our lives because someone along the way planted a seed. I have seen it in my office (as a therapist) every single day for 40 years. I understand how teachers grab teaching moments as they appear and as they can. The way we handle grief is a cultural deal and education at all levels can change that in our lifetime. Workshops in the community, grief classes at the college level, churches providing education on grief...this is one thing we all share and no where do we see it taught until we are dealing with it and then a very very small part of the population gets involved. I hope it changes. Kubler-Ross started something that many have picked up on including Hospice, Moody, and so many others...now we need to take it to a new level...

Peace,

Mary

[dave s]

Coming from a long line of educators and being a substitute teacher for awhile during my previous career as a ski bum I hear what you are saying...........also think the same for the nursing profession, long unbelievable hrs, short on help, and having the impossible task of being everything to the patients.............discouraging........Dave

[HAP]

Dear Mary,

You may be right. I've come out of that fight so recently it is hard for me to see things clearly. More for me to think about.

Peace,

Harry

[mfh]

I think as a country, our values and priorities are so screwed up...and education does not escape those attitudes. we have a long way to go. Teilliard de Chardin said in a book I read in the 60s when I was 20 something....that mankind is 2 million years from transformation. That puts things in perspective pretty quickly. You are one fried teacher....teaching...taking care of your loved one...and helping kids is a full plate....Peace, Mary

[Dwaynecg]

Dear Mary, and Harry,

I watched that video, and thank you Marty for posting that. I have a different take on life. I am not living in the moments of grief every day, I miss Pauline more than live itself, but on the other hand, because of the length of time we had to deal with MS every day for years, we learned that we could not change the out come, but we could change how we look at life and live life. That is something that a person who deals with loosing their loved on in a short period of time 1-2 years are nothing when you compare it to the real sachem of life, in the number of years we live. Pauline told me time and time again, Grieve yes, but don't life in the finality of the end. Move down the road in my new life. I tell you it is very hard to do, but I told her I would so I am. I will never forget, but I will go on. So I have changed, my out come after Pauline. I tried different roads to get to my goals, until I found the one that works for me. I am still learning my life as I go forwards, but going forwards I am. I find joy in every day, even when my brakes on my car let go on Thursday on my way home. I could have panic and hit a car, but I kept my focus and used the E-Brake, and everything was fine. When I got home I had a check for $435.00 in the mail, something I did not expect. I call it money from heaven. Now I had the money to get my brake fixed. I drove to church and back only using the E-Brake and diving very slow and cautious. I went to my friend garage. Pauline's brother who lives in the area pick me up and I went to their home and what did we do. Spit wood for about 5 hours. We worked as a team, and it went fast. We ate, then he took me back to the garage around 2, because he was going hiking with a friend. I got my car fixed and had a wonderful day, filled with laughter and joy, I could talk with Pauline's brother Wayne and his wife Shirley, without the tears falling. Why because I have learned to look at life differently and understand, that no matter how hard I tried to stop the MS and keep my beautiful wife, my best friend, my soul mate, and lover, her with me in human form, there was nothing that could have been done to change the out come. Because if there was, then she would be here with me today. So I accepted what life has given me, the good and the bad, and there was a lot of bad over the long time with MS. So I move on like Pauline wanted me to do so much, that was very important to her, and I promised her time and time again, to grieve but not let grief control me. I will learn to control it, and I have. Do the waves still wash over me and through me all over the place, YES they do, but after I get up dust myself off, and look towards tomorrow, where the sun will, shine bright and a new day rises. I remember, the first time I was able to laugh again, after Pauline past, and it was wonderful, because I though I would not enjoy laughter again, but now I do.

Grief is such a personal thing in live. We all travel through our time in grief so different, HOW can we teach children about grief, when it is something that they may not have experienced yet on any kind of level. I think we could talk with them about the tools we use while we are in grief, to per pair them that way. To use the tools in life, like we do everyday for other problems we encounter, everyday. But to be able to teach what grief is like, I really think that it is something they will not comprehend, until they are faced with it themselves. So lets give them the tools, to be able to handle grief in a different way than all the generations before them.

You can experience grief on different level, by when one life is change so much by a serious accident, that changes their life forever. These people experience grief also. I have seen this first hand with Greg. He is just now after months of recovery, start to something back that resembles his life before. I have helped him every step of the way, to understand, that his is going through grief also, like I am. This work I have done with him, has in lighten me so much as I relate to grief and how I was dealing with it, That If I want any kind of life again. I had to step back and re-examine, myself, and how I was handling grief, and I tell you it was not pretty, so I had to re-adjust my lens on life and what I wanted out of all my years I will have without Pauline. It will be another life, a new life, a different life, one that I will make my own again, but in a much better way, because of Pauline and the life we had together, and the horrible disease MS, that ate her away little by little over many years. The things I learned to do for her, will make me a great nurse, to be able to help someone else, with their life, in appositive way. That is what, drives me into the future. The great gift Pauline gave me. True love. Something that will never leave me, no matter how long I live without her by my side. She lives in my spirit of life. I will and am making her very proud of her man. Just like I did all my life with her. I only hope and pray that you will all find your own inner peace, like I have found, because when you can, it releases the grief on your life just a little bit. I will always grieve for Pauline, but in my own way, on my own terms.

God Bless

Dwayne