It's Valentine's Day in CancerLand

So, you are in CancerLand on Valentine’s Day?

Yep, that sucks. It’s awful. I know; I’ve been there. 

But you do not have to surrender to 5FU and all her crazy chemo cousins.

You can have Valentine’s Day and romance and cancer. Here’s how: 

Remember how Valentine’s Day worked before cancer.

Shed one tear remembering that, and then laugh. Find something to laugh about. Call up your true love and reminisce together. 

Make a Valentine. If you can get out, buy a pretty one. If you can’t get out (friggin’ 5FU) then make one: paper doilies, red Sharpie, tear a story form the newspaper, write on a playing card (yes you can ruin a deck of cards by taking out the King or Queen of hearts).

 Drop your expectations. Like a hot potato—drop them. This is Valentine’s Day in a new country: CancerLand.

Think about love, and email love and text that love. There is so much love in CancerLand and with your partner, state it clearly. You have seen and felt love so grand and so different than people who have never visited CancerLand. Claim and celebrate that love. Explicitly.

People around you may be afraid to ask, “What are you guys doing for Valentine’s Day?” like they are asking other couples. Shame on them—announce what you are doing. Stare down their fear. 

Things to keep: affection, conversation, chocolate, cards, flowers, bad poetry, good poetry, and romantic comedies (TV listing are crammed with romantic movies tonight.)

Things to lose: expectations and projections

Things to negotiate: a good meal, gifts and sex. (be creative and open-minded with that last word.)

Refuse to surrender: your relationship, your coupledom, your happiness. 

Holiday Gift Ideas to Brighten the Season for Caregivers

This week we welcome Beverly Nelson from StandUpforCaregivers.org with suggestions to make nicer holidays for family caregivers:  

Caregivers are the unsung heroes of families and the healthcare industry.  They carry a heavy burden when it comes to the care and tending of others. If you have someone on your shopping list who is a caregiver, consider giving an especially meaningful gift this holiday season.  

 Who are the caregivers?  Most of us will be caregivers at some point in our lives.  In 2012, over a third of the American population gave unpaid care to someone with a chronic health condition.  According to the U.S. Department of Health and Human Services, that percentage will steadily increase as the population ages.  Most of those people providing care also hold down other jobs.  

 Caregiver stress.  Caregiving is physically and mentally demanding.  As time goes on, those performing the role of caregiver often experience negative effects from the burden of their duties, developing what is termed “caregiver stress.”  Symptoms include depression, anxiety, a weakened immune system, increased risk for chronic disease, obesity, and an inability to concentrate.  

 Gifts for caregivers.  Because being a caregiver is such a stressful role, consider a gift of self-care.  Encourage any caregivers you know to do something indulgent and good for their mental health.  Experts at The SeniorList recommend gifts “that help the caregivers in your life feel recognized, appreciated and pampered.”  Here are some great suggestions:

Give them a break.  According to some experts, the best gift you could give is an experience or service.  Do their shopping or housecleaning, prepare a meal and deliver it to them, or give them a respite for a day or overnight.

Create gift certificates.  Think through what this caregiver might really need and make gift certificates “redeemable upon demand.”  The Washington Post suggests you could make six certificates for 29 venting sessions.  You can make gift certificates for delivering meals, housekeeping, or that overnight respite, too.

Create a personal treasure.  The Caregiver Space suggests creating a keepsake such as a scrapbook or memory album.  Make it especially sentimental and if the person in care is still able, interview him or her and include the information.  

Photo collage.  Put memories on the wall in a photo collage.  You can always include some handwritten notes in the collage along with the photos.

Food delivery.  Your caregiver might really appreciate a monthly or weekly food delivery service.  Join a food club and make the caregiver the recipient.  The Adventurous Writer recommends clubs that offer baked goods, fruit and cheese, coffee or chocolate.

Spa day.  Consider an outing at a local spa, complete with massage, pedicure and facial.

Two tickets and a certificate.  Give two tickets to an event your caregiver will enjoy, along with a certificate for you to give respite while the caregiver goes out with a friend or significant other.

Aromatherapy.  Put together some candles, room sprays, oils and lotions in a relaxing scent like lavender.  

Gourmet gift basket.  Assemble favorite coffees or teas along with chocolates, shortbread, spreads, and dried fruits and nuts.  

Organizer or calendar.  Select an organizer with a luxurious cover or a calendar with inspiring, hopeful quotes.  Make sure there is plenty of room for writing notes.

Periodical subscription.  Periodicals can be set down and returned to as the caregiver’s time permits.  Consider a magazine relating to a favorite hobby, such as birdwatching or cars.

DVR subscription.  Give the opportunity to record the shows your caregiver is missing.  He or she will enjoy catching up when things settle down.

Journal.  Many caregivers find journaling helpful for reducing stress.  Find a special journal and include a luxurious pen.  

 Celebrate caregivers!  

 Caregivers carry a heavy load and can easily become run down physically and mentally.  Show the caregivers in your life they are appreciated during this holiday season.  Give them gifts that pamper them and are meaningful.

by: Beverly Nelson of StandUpForCaregivers.org

The Easter Brothers

 I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny.  In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the

handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”.  As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first. 

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”. 

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope.  It was not a hope of miraculous recovery for  either brother,  or necessarily for a reunion in the “Great Beyond”, but  hope for  my  own  “arose” from the heartache of losing my  brothers,  my playmates,  co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries.  Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed. 

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk. 

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through our layers of loss and gain.

We Are Easter People

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd. 

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…”  That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian.  Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures.  As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

The Emotional Preparation for Thanksgiving

This weekend we’ll be preparing for Thanksgiving. There is a lot of shopping and cooking to do --but there are also emotional preparations to be undertaken this week. Like many, you may be torn between the happy anticipation of a good meal and seeing family, but also the dread of family feuds that leave you wishing to hide in a corner of the living room.

Along with the usual  “issues” that each family faces around the turkey table—the in-laws, sibling rivalries, and adolescents with attitude—we can stir in some raw feelings about national politics and a debate on the economy. It’s Thanksgiving in the REAL America and nobody’s very happy.

So many of us so want it to be the other Thanksgiving, the one we imagine that other families have, but which really only happens in made-for-TV movies.  We think that Thanksgiving’s just not what it used to be-- But then again, it never was.

It seems that we can’t shake our romantic idea about that first one with the grateful Pilgrims and the wise Indians, but it’s safe to say that most of us wouldn’t have been comfortable at that dinner either. The truth is that the Pilgrims, with their cute buckled shoes, weren’t innocent refugees from persecution. Rather they were religious zealots and not exactly tolerant.

Here’s the history: After the Protestant Reformation and the split from Catholicism—creating the  Church of England--there were many who felt the church still needed to be “purified” of Rome’s influence. Those were the Puritans. Among the Puritans were some folks who were even more extreme and who wanted complete separation. These were the Separatists--we know them as the Pilgrims. These were not folks who believed in freedom of religion. What the Pilgrims believed was that the Church of England was corrupt; that Catholics were the Devil’s spawn and that they were superior in knowing God’s truth.

We still have some emotional resonance of those ancestors and their vibe is with us at Thanksgiving. So be prepared.

Part of the problem is that religion permeates this day directly or indirectly; someone or something is being thanked for the good in our lives, but there are political tripwires from the stuffing all the way through to dessert. Most of us will be sharing a meal with folks who not only mix their potatoes with their peas but who mix politics with their religion:  Every current event, everything in the headlines--war, terrorism, same-sex marriage, the war and the Middle East—touches religion in some way. And that intersection of religion and current affairs will cut right through the dining room table on Thursday.       

Even saying grace is tricky. When the blessing includes a prayer for peace someone at the table will be listening for what kind of peace? Do you mean Get-out-of-that country peace or the bomb them into submission kind?

Next Thursday we may be humming, “We gather together…” but in our heart of hearts we want to insist that OUR team should win, that OUR recipe for stuffing is the best, and that OUR candidate was right.

So if you find yourself dreading the doorbell, or if Uncle Harvey mentions the President when he says grace, you may want to retreat to the kid’s table or sit in the den to watch the game. But instead, give thanks that this holiday comes only once a year, and remember--- it’s all in the spirit of the day. 

Oh Christmas Tree

I am grateful for another Christmas. I am grateful for Christmas without chemo. I am grateful for Christmas with most of the family speaking to each other and even for those not speaking there is a kind of benign detachment. I am grateful that we are both well and that we can put off all medical appointments until the New Year.

Gifts are purchased. Cards written. Invitations out for our annual New Years Day party. Tomorrow I’ll work a long day of Adopt-A-Family—getting gifts to others—and with much less resentment this year—and much less drama. Incredible gratitude for that.

Friday grocery shopping for the Christmas dinner with our nearby family. Saturday church and singing carols. But tonight—oh tonight—

The Christmas tree!

Looking for Signs

I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid but part of me wants instructions that spell out very clearly what I should do with my life.

I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.

Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.

But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We have Solstice and now Hanukkah and then Christmas, all great stories about finding light.

The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.

In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”

Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?

So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.

This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.

Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.

Helping Hands for the Holidays

If you are a family caregiver you know --or are learning --that you can ask for help with many basics. Most family and friends think first to offer a meal and the casseroles will  arrive but you can ask for --and they can help with--so much more. (Besides lasanga is only good the first 20 times). You also know that you can ask for rides, laundry, pick ups at the pharmacy, grocery store and my favorite, the dry cleaner--if you are a working caregiver please let a friend be in charge of your dry cleaning. Some folks will help with light housekeeping or baby sitting, maybe doing homework or fun activities with children.

But the holidays are here: Hanukah and Christmas are right around the corner. No one expects you to entertain or be super celebratory--but you don't want to miss the holidays entirely. Hence the big stress add-on.  Chemo at Christmas will blow every caregiver higher than the first star in the East with stress.

So think about this: You can ask family and friends to help with Christmas tasks too: shopping (hand over the list of basic gifts-- the ones you can name by make or brand), cookie making, gift wrapping, set up the tree, decorate, and going to the post office. I know that everyone is busy but all of your helpers are going to the mall, the card store, the hardware store and the post office anyway. Let them do some of it.

You'll want to keep some holiday tasks for yourself--you'll feel better that way--but you can shop for the closest loved ones (shop online) and you can put the star on the tree or light the candles each night. But you don't have to do it all--or feel bad if you don't. The helpers will really, really feel so much better about themselves if they help you at this time of year--so give them the gift of helping you.

Memorial Day 2011

Simple rituals. Simple facts. Yesterday I gave a talk on military mental illness and the economics of veteran’s mental health. I was blessed to have the podium at a wonderful social justice church in Troy, New York. I spoke about the China Marines and the survivors of the Palawan massacre in World War II.

Today John and I went to the local Memorial Day parade. We walked for an hour—he looking for students and me waving to vets—the older the better. And the “Vets for Peace” and “Grannies for Peace” too.

The man who married us was walking in the parade and he came over to say hello and gave me a flag on a stick. “You need a flag to wave” he said. And indeed I do.

Day of the Dead

Today I celebrate Dia de los Muertos, or Day of the Dead. It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.

I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance. But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end. This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”

I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brother Larry I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.

Though he died several years ago my feeling about my brother is that I have misplaced him; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?

Walking in a Winter Wonderland

I’m making a list and checking it twice, and thrice and even nine times: his kids, my kids, his ex and mine. I wonder about all of this, and things like holiday traditions? What are his? mine? ours? Memories: his, mine, ours? The holidays add tension. I feel sad about relationships lost and fear about the complexities in this one as we add kids and expand our circle. Will we make it to a summer wedding, or cave in to their demands and criticism? I keep wondering.

Now, like the sign at the mall, my heart says, “You are here”.

Lost in the upbeat melody of what seems like an innocuous holiday song are these incredibly poignant words: “To face, unafraid, the plans that we made.”

Walking in a winter wonderland.