Excerpt from In Sickness and In Health

The following is from the preface of the book, In Sickness and In Health,  I wrote with my husband, Jim, about his liver transplant experience.

In Sickness and In Health“The moment of despair hit me in the parking garage attached to my office building. I realized I had nowhere else to turn to save my husband’s life. Over a three-year steady deterioration in his health, I had watched Jim go from an athletic, robust, fifty-year-old real estate developer and avid bicyclist to a thin, weak, gray-skinned medical patient in need of a liver transplant. We had run out of other possibilities.

Our ordeal began when Jim’s doctor told him that he needed a liver transplant but that his HMO would not provide or pay for the surgery. We went from shock to denial to naïveté. How could we pay for a $250,000 medical procedure and at the same time maneuver our way through a complex, insurance-driven medical system—without coverage?”

 

To purchase the book at Amazon Click Here

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Booksigning – In Sickness and In Health

In Sickness and In Health

Come to my book signing

Sunday, January 26, 2014

at

Bookworks

4022 Rio Grande Blvd., NW

Albuquerque, NM

1:00 p.m.

This book was written before Jim passed away and includes his writings as well as mine about how to live a full life while dealing with chronic illness.

—-Marilyn

To Purchase the Book at Amazon Click Here

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Getting Back to Your Life

I haven’t written for a while because BOTH Jim and I were in the hospital . . . AT THE SAME TIME! Fortunately we were in the same hospital, though not in the same room. The upshot is that Jim is recovering nicely from pneumonia and I was given a clean bill of health after a number of tests. All good news. This has been quite the flu season.

Because of this experience, I want to write today about how to get your life back when caregiving has defined it for a period of time. Jim had a liver transplant in 1993, which kept him alive and thriving, but also, after a time, resulted in drug-related medical conditions which have become chronic. He and I both have learned how to deal with the ups and down caused by this situation and still go on with our lives. You can find more details about this journey when our book, In Sickness and In Health, comes out this spring.

So this month I was reminded once again of how important it is to be able to keep your own life going even if you have other obligations such as taking care of a spouse, a parent, or child, working, or otherwise giving of your time and energy to others. I realized today as I drove to my appointment with my personal trainer that I was OK and that I had a life in addition to being a caretaker. That was because I was doing something enjoyable on my own for my health and well-being.

I first was aware of how important it is to realize one’s own individuality after my mother died. We were very close during all of my life, and I identified with her in many ways. After her passing at the age of 85, I began to feel older than my years, and began worrying that I would soon die. It was at my first personal training session with Andie, several months after my mom’s passing, that I realized I was not my mother, that she had died but I had not, and that the odds were that I had many years of my own life left to live.

The lesson is that it is important to take care of ourselves not just mentally and emotionally but also physically. We are holistic beings, and we need to tend to all the parts of us that make us whole. It helps to recover from an illness or crisis by getting back into things that we do as individuals and remembering that our value comes not just from what we do for others, but from who we are.

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Set Your Intentention and Achieve Your Goals Worksheet

In my Deccember 30, 2012 workshop, Using Intention to Co-Create the Life you Want for the New Year, participants used the following calendar to set goals and take action steps to achieve their intention for 2012. Some people asked for another copy, so here it is. Have fun with it and see what changes happen in your life.  –Marilyn

THIS IS MY INTENTION:

 

 

I WILL

 

BY (date)

 

TO ACHIEVE THIS GOAL I MUST BE __________________________________________________

 

 

THESE ARE THE ACTION STEPS THAT WILL GET ME TO MY GOAL

 

 

JANUARY

 

_________________________________________________________________________________________

FEBRUARY

 

_________________________________________________________________________________________

MARCH

 

_________________________________________________________________________________________

APRIL

 

__________________________________________________________________________________________

MAY

 

________________________________________________________________________________

JUNE

 

_____________________________________________________________________________________

JULY

 

_____________________________________________________________________________________

AUGUST

 

______________________________________________________________________________________

SEPTEMBER

 

______________________________________________________________________________________

oCTOBER

 

_______________________________________________________________________________________

NOVEMBER

 

________________________________________________________________________________________

DECEMBER

 

ACCOUNTABILITY

I will _____________ ________________ each month to report on my progress and to get support.

(action)              (person)

 

Signed by__________________________________________________________________________________

 

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Cookie-less Christmas?

I love Christmas. I love the lights, the candles, bells, the Messiah performed all over town. I love getting a pinon tree from the people down on Griegos Street who get evergreens from Mora. I love deciding whether to use the little ornaments we’ve collected over time or the bigger red (plastic now) balls and stars. I love cooking traditional treats.

But this year I have a dilemma. How can I do some Christmas cooking and baking without gaining ten pounds like I did last year? So far all I can come up with is to not make any sweets. This would be hard to do when I think about my mom making cookies during December for us to enjoy all during the holidays, and when one way I remember my mom is to make the food she made. I could bake cookies and give them away, but then I think of the years it seemed everyone baked and exchanged dishes of cookies until we couldn’t even look at them anymore. It is not easy to not eat cookies when I realize that, like mine, most of the treats are from old family recipes made once a year with special meaning for the baker. It’s also more difficult to consume platters of treats because we don’t have a lot of young people around who like to eat sweets. And now there are even people who don’t eat sugar!

Maybe baking platters of cookies has gone the way of big families, large, extended-family dinners, and repeated gatherings through the holidays. It feels a little sad, but then I think of what I’ve learned about making new traditions based on my values. Being thoughtful about how I want to celebrate Christmas rather than just doing it by rote is really more fun. So this cookie dilemma is an opportunity to stop and think about what I really want to do.

For me holidays are about family and eating together. Cookies aren’t even a key part of it. I guess I can focus on our gathering instead of the food itself. (That’ll be a change.) Besides, making cookies “for other people” is really a way I try to kid myself, like when I buy ice cream “for Jim.” Maybe I can have the celebration part of Christmas without the cookies and without the extra weight. I can still fix dinners, and I can still think about my mom and how special she made all the Christmas holiday meals for us. She’ll still be at my shoulder when I make frittatas and breaded cauliflower and pasta con sarde.

What is important to you about the holidays? What values do you want to express? How can you have what you want and not what you don’t want? How can you make it your holiday, and let everyone else have their holiday? The last thing I want to do is to cause anyone any stress about the holidays. And especially me! So I’m going to focus on the things that are important to me, and remember my mom and dad through being together, raising a glass of wine, and preparing  something besides cookies, as Mom always said, “with love.”

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From Near Death to New Life with Another Person’s Liver: The Very Personal Story of a Liver Transplant

The “Upcoming Book” notice went out to you without an explanation. For those wondering what it’s about, the following is from the introduction to the book. Jim and I have the first draft of the book done, and we hope to finish it by the end of the year. I would appreciate any comments you have, especially any suggestions for a title.

 

Despair had me in its grip the summer morning I entered the parking garage attached to my office building as I realized I had nowhere else to turn to save my husband’s life. During a gradual three-year deterioration in Jim’s health I watched him go from an athletic, robust fifty-year old real estate developer and avid bicyclist to a thin, weak, grey-skinned and chronically ill patient. We had run out of alternatives to treat his critical loss of liver function – Jim needed a liver transplant to survive.

The most terrifying moment of our ordeal was not when Jim’s doctor told him that he needed a liver transplant, but rather that his HMO insurance coverage would not provide or pay for the surgery. We went from shock to denial to naïveté to determination that we were going to deal with this challenge – but how could we pay for a $250,000 medical procedure and, at the same time, navigate a complex, insurance- driven medical system without “coverage.”

This is the story of how we accomplished that —  with the love and support of friends and family, persistence, and good luck. We learned a great deal about how many people are involved in receiving a life-giving organ – from a donor we’ll never know to our closest family members and lots of people of good will in between. And we learned about how, when life changes dramatically, to hold onto what’s important in moving towards a new life.

Few of us are lucky enough to never need a doctor. Everyone else has had illness or challenges like ours. And every single person fortunate enough to grow old will deal with the transformational changes of aging. How to find new things to do when we can no longer do the familiar things, and how we go from doing to being is what this story is about.

Jim and I decided to write about our journey with the hope that others could benefit from some of the lessons we learned. It’s the lucky exception who doesn’t face a personal health challenge. I believe there are some common experiences from which we can share not just coping strategies, but even attitudes and perspectives from those of us who have already been there.

 

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Lance Armstrong – So What?

As a Lance Armstrong fan and bicycle rider, I was extremely disappointed to hear the undeniable reports about Lance’s transgressions. My husband, Jim, a former bicycle shop owner and cancer survivor, has a picture of Lance with his bald chemo-head hanging in his office. Lance inspired him as Jim went through chemo and hoped to live a normal life again. And I wore my Live Strong yellow bracelet in support of Jim, Lance, and all other cancer survivors. What does Lance’s disgrace mean to us and others who were encouraged to “live strong” ?

I think it means very little. That’s because whatever choices Lance made do not take away from the hope, encouragement, and success we and those like us who were inspired by Lance found. Although the inspiration we took from Lance came from the outside, the courage and hope that Jim and all of those like him found came from within themselves. Lance might have been the catalyst, but he wasn’t the source. The source was found in the spirit of each cancer survivor. The optimism people got from watching Lance really came from themselves. So Lance didn’t bring something to people they didn’t have. They couldn’t have found it if it wasn’t already there. He was simply the motivation for them to look within and find their own strength and power.

There’s a lesson here, a lesson that is being repeated all too often these days. That is that all idols have clay feet, that all humans are imperfect beings, and once again, that if it seems too good to be true, it probably is. But the silver lining is that the optimism, the faith, the bravery we find when we are inspired come from within us. So yes, it’s terribly disappointing that Lance has been stripped of his titles, but we still have our own stories of survival, courage, and faith that keep us going and that we can pass along to others as we ourselves “live strong.”

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Tummy or Belly?

I was admiring the muscular body of the spin class instructor last week (she did not have a round belly) and wondering if it was too late to go for it when she mentioned her two-year old child. Ah, I thought, I barely remember when my children were two. It is too late to even approximate looking like that. Forget about it. 

I noticed then that even the thinnest of the senior female members of my very fit spin class riders had a little round tummy. I began thinking back to when I was in my twenties. I thought I was overweight (I was not) because I did not have the slim hips and nonexistent tummy of young men, Twiggy, or magazine models. I was always sucking in my stomach. It is even more ridiculous to try to look that way at this stage of life. And besides, a frequently remarked-upon benefit of being in what Jane Fonda calls  the third act is self-acceptance. And that’s true. If we ever bought into society’s misogynistic strictures about how women should look, it’s way past time to give it up. (And besides, who’s looking?)

 My first foray into feminism and body self-acceptance was taping up on my college dorm wall reproductions of Renoir’s voluptuous women. Then, a few years later, after my two sons were born, I found there was no way I was ever going to have a flat stomach aside from an eating disorder, which fortunately was not my style, so I took belly dance lessons in an effort to appreciate my womanly curves. It wasn’t quite as exotic as it sounded, since the young woman I chose to take lesson from lived in an apartment where she wasn’t too good about picking up her dog poop. The first class was delayed while she cleaned the living room, and I found it difficult to belly dance while I was holding my breath, so that was my last lesson for a while. But I did like the idea of appreciating my belly.

 It was fun in class to entertain the fantasy of having an athletic trainer’s body for a minute, and it was reassuring to know it was just a fantasy. Yes I can probably build more muscle, and yes, I can probably lose some weight, but as I said, I’m now going for health – mental health as well as physical health. Mental health to me means not criticizing myself.  So I silently complimented myself and my fellow cyclists for our hard work and decided once again I would no longer think about looking like a 30-something. It seems that virtually all of the women I know over 60 have a round belly. It’s part of this stage of life. I accept myself and my body now, and appreciate all that my body has done for me.

 But there is a difference between having a little round tummy and having too much belly fat. There are health reasons why we should worry about belly fat at this age. The Mayo Clinic Diet book tells us that a pear-shaped body is better than an apple-shaped. It says that if you carry most of your fat around your waist or upper body, you carry fat in and around your abdominal organs, which increases your risk of developing disease. Your risk is not as high if you have a pear shape. The book has a Body Mass Index chart to determine whether you are normal, overweight or obese and describes how to measure your waist to determine whether you’re carrying too much weight around your middle.  

 So I’ve decided to lose an inch around my middle. Anyone want to join me? If so, measure your waist now, and let’s measure again in a month to see where we are. And if you want help knowing how, check out the Mayo Clinic Diet. http://www.amazon.com/Mayo-Clinic-Diet-Enjoy-Weight/dp/1561486760/ref=sr_1_1?s=books&ie=UTF8&qid=1343340611&sr=1-1&keywords=mayo+clinic+diet+book

 

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Tribute to Nora Ephron

           

I was saddened to read about Nora Ephron’s death last week. I watch Sleepless in Seattle regularly, and I love her writings. I wrote the following poem in response to an article by Nora in Vogue Magazine. The second poem is along the similar lines.

 

To Nora Ephron

 

Dear Nora,

Thanks for writing about “the D word.”

But really —  in Vogue’s Age Issue?

I wanted to see what, if anything,

Vogue would have to say

to those of us in our sixties.

And there you are, exactly my age,

writing about death – your friend’s death.

 

But we still have to wear something

and do something with our faces maybe

and maybe our skin or our nails or our hands and feet, or . . .

 

We can’t just wait for the big D;

denial’s not working,

fantasy goes only so far.

 

Couragio! I know!

Let’s be Italian in our last years.

Eat, drink wine, sing, make art,

bring joy.

That’s our work –

to bring fun to our serious, hardworking children –

cookies, chocolate, flowers, music –

to remind them that life is short and wonderful.

 

 

Love and Fun  

 

I don’t know anything

especially what I used to especially

about what people should do or

why life is the way it is or what

brings happiness except for

living in the now difficult and

trite as that is. Now is

all we have now is where

to find joy and happiness now

is bliss.

What-if,

if-then,

if-when

nobody knows, least of all me.

I saw it yesterday in a cottonwood tree heard it in a bird song. It’s

in beauty and kindness and of course love.

I’m sorry I have no answers.

The older I am the less I know.

I’m only good for love and fun.

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Just because you’re interested…

One of the most difficult issues for those of us in what Jane Fonda calls Act 3 in her new book Prime Time is that we get seriously busy. Rather than having time to read, work on our favorite pasttime, enjoy life at a relaxed pace, we find ourselves living according to our calendars, volunteering for duties that end up feeling like a job, and finding ourselves at the end of the day wondering why we didn’t … read poetry, write, play music, take a walk … you fill in the blank.

I’ve noticed how many women take on projects out of a sense of obligation just because they can do whatever the job is. For example, I volunteered to be the president of our homeowners’ association because I had experience running organizations. This took a lot of time that I then didn’t have for other things. While my homeowners’ association is important to me, there are other ways to be involved that are more fun and less aggravating.

Which leads to the next reason I’ve noticed that keeps me busy, — doing things because they are interesting. If you’re like me, you’re interested in a lot of things. That’s why I have a pair of waders to use for fly fishing which I have yet to wear. And it’s why I spent last Saturday morning at a meditation workshop (which I have already incorporated into my routine), and why my calendar looks like it did when I was working full time at the law school. The world is an interesting place. I could completely fill my calendar with classes, workshops, adult play-days. So rather than just do what sounds interesting, I have decided that before I say yes, what I choose to do has to relate to my values for this time of my life.

We live a life of fulfillment by making choices consistent with our values. If there’s a conflict in what to choose, then determining our higher-ranked value can resolve the conflict. Values arise from who we are, not what we do. If my values relate to being in nature, being with people one-on-one, experiencing solitude, then I probably wouldn’t choose to spend my money and time on going to NASCAR events. Usually we know intuitively if activities relate to our values; that’s why we want to do them. But sometimes things get complicated if we are asked by a dear friend or an organization we belong to to do something that we really don’t want to do. But because we want to spend time with our friend or stay involved in the organization, we say yes then find ourselves overbooked, often with activities we really don’t enjoy.

What will help us get off this merry-go-round? Take a little time to write down your values and rank them according to their importance to you. One way to do this is to think of a peak moment in time and then extract the values from that experience. Then, when you are leafing through the continuing education catalogue or browsing on the lifelong learning website, you will decline signing up for kickboxing and instead opt for restorative yoga or say no to Re-enactment of the Civil War in Socorro and sign up for A Culinary Tour of Italy. While all of the classes sound somewhat interesting to me, some are more consistent with my values.

To avoid the “how did I ever find time to have a job?” busy-ness syndrome, ask yourself these three questions when you are about to say yes to an opportunity.

1) Does this relate to an important value?

2) Will I really enjoy doing it?

3) Do I want to give it the time this will take?

If you can say yes to these three questions, you probably won’t regret your decision.

 

 

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