Saturday, April 05, 2008

Miracle-Hope

The hardest thing about this whole adventure (for me, at least) are the folks I've started calling Hyper-Hopers.

They're folks who say, "Gerry WILL beat this, the doctor's aren't always right! Don't lose hope!" They desperately NEED for me to jump on the Hope Train with them.

When I run into someone like this, I feel that I MUST hope for the same things they're hoping for, or I'm letting them down.

And it's not just plain, simple hope they want me to espouse (we have that in buckets full) but it's an irrational, hiding-from-the-truth, XTREME, HOPE.

I've come to the conclusion that because they don't entirely believe what they're saying, it's vital to them that I believe what they're saying - almost as if my sanction of their belief is what's most important. It's like asking me to carry their purse, or books, or belief structure for them.

They ask too much of folks who are just trying to get through a very rough patch in life.

They want to use Gerry's illness as some kind of morality play where a truly POSITIVE person will recover, while a less positive person will fade. Trial by cancer.

But I think - at the heart of it - they want us to do what they do every day - ignore mortality.

We used to be able to do this, we can't do it anymore. And it's not a bad thing - this understanding that life will have an end. The folks who tell us that "Gerry WILL beat this!" - how do they know?

Some have told me that "God will work a miracle, Gerry will be cured!" but that's too easy to say, and ignores the responsibility we each bear for our own lives.

There have been miracles. To my mind, the kids are miracles. The fact that Gerry and I found each other is miraculous. And the fact that we can laugh through this truly terrifying experience is also a miracle.

But I don't - not for one minute - believe that we'll go to the doctor tomorrow and he'll say, "You're totally clean, no cancer, all signs are perfect and you'll live to ripe old age..."

And, of course, that's the catch 22 - if I say out loud that I don't believe there will be a "Hallelujah! Cancer is Cured!" bona-fide miracle, it's a Gotcha! moment when some of the more fervent adherents to the 'miracle theory' might say - "See, THAT'S why there hasn't been a miracle! She didn't BELIEVE!"

Oh, goody, more crap for me to carry around!

This is so different from the many kind folks who simply say, "We'll be praying for you." - which is lovely. They don't need anything back from us - they don't need us to say, "Yes, you're right, we WILL beat this!" or anything like that. They don't even need me to say, "Thank you" - although I do - because they're offering this as a gift.

When I want to convey a sense of solidarity with sick friends, I generally say, "We'll be thinking of you..." because sometimes introducing the prayer thing can be a burden to the person who's ill. But if folks want to pray for us, then that's fine.

Just don't expect to pray with us. That's too personal.

So here are the truisms we've learned in this stage of the journey:
  1. Unrealistic Hope is expensive, and we're on a budget.
  2. When someone is in a very bad situation, don't tell them what YOU want them to hope for (ie, recovery), just hope they have a good day. That's enough.
  3. So far most of our doctors have been right - and miracle workers, too.

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44 Comments:

Anonymous Marie said...

Reading your insights so often brings expression to vague ideas I have only sensed but never actually brought to an expression of my own!

April 05, 2008 8:16 AM  
Anonymous Anonymous said...

I just read an essay from rabbi Harold Kushner's When Bad Things Happen to Good People. I absolutely loved what he has to say, and I know you would too...especially right about now.

I can make a copy for you if you haven't already read it.

Sending you love,sunshine and a great big hug,

Cora Greenawald

April 05, 2008 8:45 AM  
Blogger Joanne said...

You're acknowledging something so important. My family raised me to face illness and death as a part of life. A sad part, but important, meaningful, and worth praying about, helping with, and supporting someone through. The miracle is that we got to experience it all--life, in the first place. We can't sit around waiting for the lightning bolt cure, we've got to do the best we can with what we've got. It's an invaluable lesson..hard enough, you're right,so that you shouldn't have to carry around other peoples' miracle cure theology.

You're such a good role model of strength and bravery to your kids and community. I will keep you in my thoughts. I wish your family much healing, strength in coping with this, and peace.

April 05, 2008 8:50 AM  
Anonymous Ruth said...

I just had to delurk to support you in having the courage to speak the truth. As a family physician, one of the saddest situations I ever cared for was a couple (the woman had terminal cancer) who carried the enormous burden of living up to these "hope and immortality" expectations - to the extent that she felt compelled to fabricate supernatural experiences to "prove" that she was a good person (she disclosed this to me at one point). I found it utterly tragic that she was unable to fully live the time she had left because of the pressure to "superachieve" in her illness.

Wishing you peace and joy, and continued courage in your journey.

April 05, 2008 10:34 AM  
Anonymous Rosie said...

You are so right Annie. One must face reality and have strenght as you do. Always in my thoughts.

April 05, 2008 10:35 AM  
Blogger Janice in GA said...

It's a type of magical thinking. I do the same thing on a tiny scale when I imagine that my favorite hockey team will win if I can just finish the section of knitting I'm working on.

We're all prone to it. But expecting other people to buy into OUR magical thinking is a little unrealistic, isn't it?

My 83 yo dad died recently. In HIS case, "a good outcome" was an easy passing surrounded by people he loved, and people who loved him. It would be great if every good outcome involved healing and long life, but that's not always how it works out.

I think about you and Gerry often, and wish for y'all a good outcome, whatever that may be.

April 05, 2008 10:50 AM  
Anonymous mwknitter said...

Seems to me those folks are confusing hope & delusion. Then there is the whole "you can will yourself better" or "you're sick because of something you did" movement. Can't they see that they are just turning illness into a moral failing - that people who are dealing with being sick don't need to be told that, if they had just done something differently, they wouldn't have gotten sick or, if they just willed it enough, they would get well. It's enough to have to deal with the illness & treatment! I think you are doing a great job of balancing hope with reality. I think some people don't know what to say & end up trying to "cheer you up." In that case, it's best to not mention the topic - they should talk about knitting or something else.

April 05, 2008 11:18 AM  
Blogger Mary said...

Oh, Annie, thank you so much for saying this!

This is something I've long believed. I cringe every time I hear somebody equate goodness with the ability to beat cancer.

April 05, 2008 11:23 AM  
Anonymous Anonymous said...

Thank you for teaching those of us who want to know what to say but until now had no idea. Thank you for teaching us about your experiences.

April 05, 2008 12:17 PM  
Anonymous Linda said...

Thank you for putting these words together so beautifully. I never know what to say to people in these hard life situations- usually opt out for "I am thinking of you". To me that is the most honest thing to say....but I never know what it is people need to hear or want to hear. Your blog confirmed what I had only surmised- people do not want to hear unrealistic rah rah. Thank you for being such a great teacher- not only of knitting, but of life. And I am thinking of you!!

April 05, 2008 12:33 PM  
Blogger Frances said...

My thoughts and prayers are with you and your family.

April 05, 2008 12:43 PM  
Blogger Nancy said...

I understand everything you wrote. 21 years ago yesterday (when I was 27) my mother died 8 weeks after being diagnosed with a brain tumor. She originally was given 4 to 6 MONTHS to live.
We didn't moan and wail or hope for miracles. We brought her home, did for her what was needed and adjusted to the situation as her health declined faster than we could imagine.
I believe "what will be, will be" (and occasionally sing it!) and we have to live our lives and enjoy every moment.
I think of you four when I read your posts, or remember your class in Mystic and hope you are all well.

April 05, 2008 12:48 PM  
Blogger Lady Katryna said...

I totally understand what you are saying. My husband had a stroke and was in a study on inflammation and strokes. A year and a half later he had a second stroke and they wanted him in the study again but it had been very small and hadn't showed on the first cat scan but they found it the next day on an mri. They hadn't told us but the lady from the study was back. I should have guessed. After they told us she was able to take the blood for the next round of studies.

We told her that next time if it happens to just take the blood and tell us it is just in case if we haven't been told by then. Many people have been shock that we would say that but we are realists about this and know that since he wasn't suppose to have a second one we have to face the idea that there could be a third one and we want them to have all the data they can to either help us or someone coming up behind us.

Everyday we hope and work for the best while preparing for the worse. You are always in my thoughts.

April 05, 2008 1:37 PM  
Anonymous Eve said...

I think it's their fear people are asking you to carry for them. they want you to believe because they need to believe. In reading your blog I can see that you do believe. You believe in your family and in doing the things you need to for yourself and your family while you live through this hard time. That's the belief you need. I don't know you (although I feel as if I do a little because of your blog) but I think of you often and wish peace and joy for you and your family, wherever you find it. I'm so sorry for the event that must hae prompted this post. Please remember that there are many of us out here thinking of you and totally willing to carry all our own baggage!

April 05, 2008 1:54 PM  
Anonymous Anonymous said...

Annie, when I had cancer, some friends would say to me Mary, "you aren't fighting hard enough. You HAVE to fight" You can only imagine how tired and exhausted and weak I felt going through 7 months of chemo for a very deadly cancer. Research has now shown that those who fight and those that don't die at the same rate. I love the openness in your blog. You have great courage(even if you don't always feel it.) Mary in Cincinnati

April 05, 2008 3:33 PM  
Blogger Cynthia said...

Here, here Annie; so well said! I hope YOU have a fucking fantastic day!

April 05, 2008 3:42 PM  
Blogger Mary Ann said...

Annie, I started reading your blog about the time your family moved to St. Paul. My Dad died from MM a little over a year ago. He was 88. He chose not to have the treatments Gerry is having so he died six months after the diagnosis. The miracle is that we had six months to say good bye and were there when he passed. What I believe is that we often don't know we are experiencing a miracle at the time it occurs because it doesn't feel like a miracle at the time. I think of your family often. I believe that you are all perfect gifts to each other and I think you are all living that out.

April 05, 2008 3:48 PM  
Anonymous Bonney said...

I hope you are writing a book about this journey. You are truly inspirational. I find your attitude incredible.

April 05, 2008 3:54 PM  
Anonymous twinsetellen said...

Annie indeed makes some good points. I too have cringed at the "A miracle will happen" wishes, but I think it is important to separate the wishes from the wishers. Is it possible that these folks, or some of them anyway, just don't know how to say "I love you" in a more productive fashion? Maybe they just aren't as wise, and we could cut them some slack.

I'd like to direct this comment to the other commenters, not to Annie, because I believe the person in the moment shouldn't have to use their energy trying to understand those who even inadvertently cause pain or drain focus away from what is critical.

Annie, keep finding your own miracles in your own time and way. Blessed be.

April 05, 2008 4:10 PM  
Blogger kristy said...

Annie,
I have learnt to take one day at a time , and be happy with that, to do what I can when and if I can. I am a chronic pain suffer and have been known to tell people to "stuff it",
kris

April 05, 2008 6:03 PM  
Blogger Carina said...

I know exactly how that feels. When I learned about my kidney tumor and in the aftermath of the surgery, waiting for a month to find out if it was cancer or not, I had tons of people tell me about friends and family who beat kidney cancer and how they were cured and fine after surgery. That was soooo *not* what I needed to hear right then. I needed a hug and a prayer, not stories of survivors.

When the pathologist in charge of my case told me that the specialist was trying to rule out the only thing my tumor looked like, a super rare and super deadly cancer, I remember my mind going blank. I lived with that diagnosis for a week, and I *hated* people telling me just to have faith and just to pray for a miracle and just to ignore it since it wasn't a solid diagnosis yet. Um, that's all crap, thanks. When you're told you might have less than three years to live and there's nothing you can do about it, you don't need that. You need a hug and some space to grieve the future that's not going to happen.

The specialist ended up deciding it was benign but not like anything he'd ever seen (other than that cancer, which it didn't quite meet the definition of). I still have a hard time believing it, a year and a half later. Positive thinking didn't make that happen. Supersized faith didn't make that happen, either. It was simply the luck of the draw, and I wish everyone got that luck, too.

Oh, and I *hate* it when people say that cancer patients got it because of how they lived or what they ate or how they thought. That's bunk. Many cancers have no real explanation, and making someone feel guilty about eating french fries or having depression is a terrible thing to do.

April 05, 2008 6:05 PM  
Blogger Tora: said...

My husband Sandy has just finished 6 weeks of radiation therapy, twice a day, along with 3 8 hour sessions of chemotherapy for throat cancer. The docs are very pleased with his progress but there are no guarantees - nothing written in stone - and dealing with overly encouraging friends and relatives as well, is very difficult and wears you down. Hug Gerry and the kids and enjoy each and every day with them all.

Tora in Chgrin Falls, Ohio

April 05, 2008 6:51 PM  
Blogger Nita said...

There have been times in my life when hope was something I hated and refused to get sucked into. There were other times when hope was the only thing that got me up in the morning. We do what we can do in the moment and time eventually shows us the next step, whether that's falling apart or getting it together.

Go with the flow and may peace come however it can.

April 05, 2008 8:13 PM  
Blogger suzenew said...

Thank you Annie for your courage and willingness to share this experience with others.

I think people do and say these things because they want to believe that they can have some control, but of course, there is just dumb bad luck and it happens to the nicest people (and some of the not nicest people too). Of course, it would be great to believe that you can wish the cancer away with positive thinking but it wouldn't be true.

You embrace hope in the truest sense - acknowledging reality but looking for the positive in each moment.

I hope that you, Gerry, Max and Hannah have a lovely spring.

April 05, 2008 8:43 PM  
Blogger Harriet said...

The funny thing about life is that nobody gets out of here alive. The victims of illness are not to blame. Our society is a society of fixers, and if it can't be fixed, the thing that is "broken" must be at fault.

That's not my experience. My hope is that you and your family get through this very tough time with all the grace you can muster....and if you can't be very graceful...that's okay too.

April 05, 2008 9:39 PM  
Blogger Alyson said...

My Mom has MM, too. She has survived far longer than any of the statistics say she should. THAT is a miracle, and a source of hope. But, every bone break is a source of anxiety - although the Docs say they're not caused by her MM, but by being old. Still, it sends my heart into my throat every time it happens. I view my job as reflecting any hope my mom has. If she doesn't get down, I won't. Right now, that's easy. Someday that will get hard. I'll take today.

April 05, 2008 9:49 PM  
Anonymous Anonymous said...

I work with Stroke patients and one of the biggest things we have to manage are the unrealistic expectations of family and friends. It's the same sort of miracle speak you're talking about. He/she'll be all right when they get home is often said, even when a patient has been with us for 3 or 4 months. It is not helpful for the patient and frequently leads to depression when they can't meet the expectations of those around them.

In reality we find that small but realistic goals and expectations are a wholly positive experience. It could be something as ordinary as being able to take a few steps to enable them to transfer to and from the toilet independently or being able to visit a restaurant with their family occasionally, or enjoying a sunny morning in the park. But the point is they doesn't require a miracle or a huge leap of faith.

Reading your experiences it is obvious to me that you have truly listened and taken in the information about MM. You have the insight that will enable you make every moment count for your family in the best possible way for the longest possible time. It is a blessing to have such understanding and your family will follow a smoother road because of it.

I'm thinking of you and your family. And in the words of Dave Allen, (an old and funny Irish comedian), may your God(s) go with you.

Anna

April 06, 2008 3:36 AM  
Blogger Angela said...

When my husband was diagnosed with cancer, my college roommate, who had Hodgkin's lymphoma in her early 20s, sent me a book-- I don't remember the title, but one of its main points was that when one overemphasizes the curative power of positive thinking, one really puts an additional burden on someone who has a serious illness. People mean well, but....

April 06, 2008 10:21 AM  
Anonymous Michelle said...

Bless your openness and honesty. I think you are truely doing what will be the best for yourself and your family...

Sometimes reality is hard to face, and most people can't do it.

I think of you and your family often, even though we have never met. This internet connection is amazing....

April 06, 2008 12:00 PM  
Blogger Geek Knitter said...

You and your family are in my heart.

April 06, 2008 1:46 PM  
Anonymous Anonymous said...

Having had my share of trials and tribulations over the years - I have found it better - for me -not to pray for something specifically - only for the strength to make it thru each day.

April 06, 2008 4:50 PM  
Blogger Leslie said...

Those people who demand you agree with them are just looking for stroking. We have to acknowledge our own mortality - and some of us go earlier than others. It's why we treasure each and every day. "Live well, Laugh often, Love much" is my motto and I think it's becoming yours too.

Sending hugs and happy thoughts. Keep the faith, Annie and Gerry. Enjoy each day and look for the sunshine.

April 06, 2008 5:06 PM  
Anonymous peggyoxox said...

Isn't it miraculous that we have the www to share and express and not feel alone in this world? Miraculous that Annie has a talent for putting into words what many cannot? We are all farkin' miracles!

April 06, 2008 9:18 PM  
Blogger Mary Kay said...

Thank you for putting my feelings into words. I am hyper-hoping you find things to laugh at together every day.

April 06, 2008 9:57 PM  
Blogger lookinout said...

I regularly look for your posts. They're always interesting and thought-provoking to me (and I've probably said it before). I send good thoughts and wish you the courage to deal with what comes at you.
Gillian

April 06, 2008 10:30 PM  
Blogger Cindy in Happy Valley said...

Attitude is important. A positive attitude increases survival and over all quality of life. That doesn't mean that one should ever give up their grasp on reality. I think these well meaning folk are confusing that simple positive outlook with the depths of depression. A positive outlook can be striving to climb Mt. Everest, or simply learning to do something you didn't take the time to do before. It can be doing simple things that make your day to day life happy and comforting.

Your family is doing this very well and no matter what the future holds you can rest assured you've made the most of the time you've been given.

April 07, 2008 8:20 AM  
Anonymous Jan said...

When my sister was dying of breast cancer, I never knew what to pray for -- that she would die and go to heaven and therefore be released from her pain and suffering, or that she would have a miracle cure, or that she would have as little pain as possible, or something else.

I learned a lot from that experience, and from reading with you, I'm realizing more about that experience that I can use now and in the future.

Thanks for your insightful thoughts.

I will keep your family in my prayers.

April 07, 2008 8:33 AM  
Anonymous Hester from Atlanta said...

One time I was with a friend of mine who is a partial quad and she was in her electric wheel chair. A woman came up to her and said *if you really believe it, you will just get up and walk out of your wheel chair*. I was absolutelyl floored. I wan't to deck this person. The friend in the chair said *Thank you* and said something else nice and we went on our way.

Now that holistic health and alternative therapies as well as the prayer movement have become common household words, I think our society has put way too much pressure on people - i.e., if you really believed you wouldn't have gotten that illness in the first place and if you really believed, you will become cancer free. Unfortunately, the science of the mind and healing doesn't always work that way. Somepeople are able to harness their mind's power and achieve so called miraculous healings - and some people have used every ounce of mind power they have and they have not been healed.

It goes like it goes. I wish the very best for you, Gerry and the kids - I really enjoy reading about your knitting experiences as well as your family's experiences.

Best - Hester from Atlanta

April 07, 2008 12:33 PM  
Blogger catie said...

Here's the miracle: People like you who live in reality, facing each day with an amazing level of grace and a willingness to share your insights with those random people like me who look into a piece of your life.

Here's the miracle: People like you who are willing to accept that every day you are with someone you love is, in itself, a miracle.

I think of you and your family often, and wish for you the continual miracle of being surrounded by warmth, love and joy in amongst the harship.

April 07, 2008 12:59 PM  
Anonymous Anonymous said...

I had cancer 25 years ago and was given only 2 months to live...

What I LIKED from people were those who didn't say anything, just gave hugs. Those who just brought food without asking first. Those who called to take our kids for an afternoon. Those who sent a "thinking of you" note. Friends who didn't turn and walk the other way when they saw me.

What we didn't appreciate....people who said "I (themselves) could get hit by a truck tomorrow". Those who said "oh yeah, my Uncle died of that type of cancer!" SHEESH OR those who said "call me if you need anything". Heck yes!! we needed things, but I sure didn't have the energy to call and tell them what we needed.

Enjoy EACH and EVERY day. I'm thinking about you all, and YES I'm praying for you all too :)

Carol in St Louis

April 08, 2008 1:20 PM  
Blogger Karin said...

Have you heard about the Last Lecture by Randy Pausch? It is now in book form and you can also see videos on the Internet including You Tube. He was also on Primetime ABC with Diane Sawyer last night. He is very inspiring and it may help you and Gerry and your children.

You can also go to his web page at:

http://download.srv.cs.cmu.edu/~pausch/

Karin

April 10, 2008 6:57 AM  
Blogger Farm Groupie said...

I can completely relate to what you're saying about hope. We went through similar issues when my dad had ALS. The thing that people said that made me the most upset was, 'God never gives you more than you can handle' because he does. It's hard and no one can know how hard it truly is.

I am so happy to hear that your kids are doing well and thank goodness you have them there to help you. Children are wonderfully comforting and beautifully reasurring. Your family is in my thoughts and I hope that you have a wonderful day full of laughter and love.

Christine

April 10, 2008 10:11 AM  
Blogger Sue said...

Hyperhopers can be such a trial, similar to those who suggest therapies that they've heard about that might help/cure. I'd be financially bankrupt many times over if I'd tried all that has been suggested and also run the well dry on hope, which has such incredible emotional costs.
Hugs and orayers to you and yours from me and mine.

April 15, 2008 7:01 AM  
Blogger Elizabeth said...

Miss Annie- you must be one of the wisest people in the world. Your eloquence and truthfulness amaze me at times. How I wish I hadn't been out of town when you taught at Main Street Yarns...I would dearly love to meet you in person. Keep up the great work!
Cheers- Elizabeth

April 22, 2008 9:44 AM  

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