Writing the Story of Your Life

by Carol Brill as told to Chris Brady

In my last post, I shared that my cancer had returned. Turns out that it returned with a vengeance. Anyone who has followed my cancer journey through this blog knows that I have fought with all of my strength and will, but at this point I cannot deny the inevitable.  This cancer is a bitch; she doesn’t care that Carol had plans to go to Florida with Jim in March. She is in charge.

Has that ever happened to you?  You planned, did all the right things, then stuff happened, and suddenly you are on plan B.

Plan B for me is hospice at home. It’s been a transition, physically and emotionally; I have accepted that my future will be measured in days, not months and years. Candidly, it sucks. But the writer in me still sees beauty and meaning in what is transpiring around me.  I’m realizing that things I thought so important have morphed into new versions of what matters.

Choosing Hospice

Early in my career I worked with a physician who was a pioneer in the hospice movement in Philadelphia. I always wondered if I would have the courage to choose hospice. But after a week in the hospital, I realized that hospice would improve my quality of life. And for me that meant:

Being with Jim in the home that we love

Spending time with family and friends with no limitations of hospital hours and protocols

Having independence to get out of bed and walk to the kitchen for a glass of water, and hopefully,

Not having too much pain.

A week into this journey, my definition of quality has narrowed. I struggle to know when I will accept the inevitable and with the help of hospice and my loved ones die with the most dignity possible.

For now, being home brings me joy every day. Waking up to Jim and other family caregivers is a gift. The little jokes they tell me to make me smile and reminiscing about why we love each other sustain me.

So many people in my life from near and far have been coming to see me, and being able to talk to them has made this journey that much more precious and bearable. For now, I’m praying that I can appreciate these little joys and when the pain gets intolerable I’ll know it’s time to let go.

In a previous blog post, I wrote about what not to say to people who have cancer.  In this one, I’d like to share my insights on facing death with a loved one, and perhaps even your own death.

Facing Death with a Loved One

It’s hard to know what a dying person wants you to say or do. You might be inclined to back away thinking you should respect their privacy at such a difficult time. (I know I’ve done that, and now I regret that I might have done more.)

Don’t guess at what your dying friend wants. Ask what you can be for them at this time of their life. Understand that a 10-15 minute visit might be exhausting one day and maybe a 3-hour visit or an hour just holding their hand is what they need on another. Maybe they won’t be able to see you too. Take it from me; this dying thing is exhausting. But always try; ask them to tell you what they want; and listen to what they tell you.

Perhaps you don’t know what to say to a dying loved one.  Here’s what I have enjoyed: People have talked to me about our shared experiences, why they valued our friendship, what they will miss. Be silent if they need that.  Be there for caregivers too.  This is their journey too.

Recalling What Made Life Special

These chats with family and friends have me reflecting on what made my life special. And it’s occurred to me that some people get quantity, others get quality, and the really lucky ones get both. I’m kind of pissed about the quantity part of my life; I’m too young to die. But thank God, I hit the lottery on quality.

I moved to Cape May, a place I love so much at an early age.

I got to be a beach girl, watched thousands of sunsets and walked miles on the beach, the ocean a song for my soul.

I had a terrific career in healthcare.

I wrote and published two novels, Cape Maybe and Peace by Piece.

I retired early and loved living every day completely with Jim.

We lived large. We started going to Florida for winter vacation 15 years ago, extending our break from two weeks to a month and recently to five weeks.

We have wonderful families.

I could go on…

Of course, my greatest joy is that I married the man I love more than anyone in the world, and he loved me back. Through all the years, the ups and downs, we never questioned that we loved each other, and that brought us through the hard times stronger than ever.  My greatest sadness is leaving Jim alone in the world. But as much as it pains me to think about life without each other, I know that he will get through this.

If you take away anything out of this post, take it from me that you are creating the story of your life this very minute. Don’t put off vacations because work is too busy, tell your lover how they complete you, be present in the lives of family and friends, and follow your passions. Go to the beach, or whatever your version of that special place might be.

And feel free to reach out to me in the great beyond if you need a friend.

But not just yet… I am still writing my life story.

Living Through Cancer

 

I’ve been quiet on the blog front for quite a while. First, I felt there was so much noise during the campaign and election and I didn’t want to add to the racket.

For the last month, a different kind of turmoil has kept me silent.

There’s no easy way to say, the cancer I prayed was in my rear view mirror is back. Almost two years after finishing chemo and radiation, I start a second course of chemo early in December.

When I was diagnosed with uterine cancer in June of 2014, I wrote the blog post, After You Hear It’s Cancer, about my feelings and reactions to hearing those terrifying words.  http://4broadminds.blogspot.com/2014/06/after-you-hear-its-cancer.html

I don’t have all the words yet to describe what it’s like to hear it is cancer the second time around.

I wanted to be done writing about cancer, hoping I’d already learned and shared everything from this experience that I was supposed to learn.

But, life doesn't always give us what we want. So today, I write the blog I hoped never to write.

Each day, I’m reminded again I can live through cancer one day at a time. I know from experience that is easier when I am not alone. So, however you send positive vibes into the universe—prayer, chanting, holding in the light—could you send some of that my way?

Small Change

Yesterday, when I went out to take my morning walk, I crossed the street to toss my neighbors’ newspaper onto their porch. Rather than cross back over to my side of the street, I stayed on their side, walking up a street I usually walk down. It surprised me how that tiny change altered my perspective.

I spotted shrubs and flower beds, birdfeeders and planters, backyard decks that are out of sight coming from the opposite direction. There were nuances and shades and shadows I’d never noticed before.

If a small change can give me a new point of view in my morning walk, can small steps of change work for my attitude too?

With all the discord in the world around us, what is possible if instead of holding fast to our own position, we each take one small step towards the opinions we disagree with or look down on and try to see them from another direction?

Even if we still disagree, if each of us is willing to take that first small step, could we better hear and understand each other?

TRY KINDNESS

Remember when parents used to say, “Stop crying or I’ll give you something real to cry about?” A version of that happened in my life last week.

Between missing my dad on his birthday September 4th, the looming end of summer and dwindling beach time with family and friends, and saying goodbye to favorite summer locals, I wallowed the days after Labor Day feeling downright sad. 

And then, at 8:39 a.m. on Friday morning, in the checkout line at the Acme, I got a text that put things in perspective. 

My brother, hundreds of miles from home for his job, was on a stretcher, in an ambulance, on his way to the hospital with symptoms that sounded alarmingly like a heart-attack or stroke.  

Talk about something real to be sad about! My first reaction after getting off the phone with my brother was to burst into tears. The next hours were tense and scary until a battery of tests ruled out the most frightening diagnoses. Thankfully, by later that day we were cautiously optimistic his symptoms were temporary and treatable and the next day he was able to fly home. 

After my initial crying jag Friday morning, a few things kept me from completely melting down. First, the minute I got home from the Acme, Jim glued himself to my side and stayed there through every text and phone call. As we do in our family, my siblings rallied, ready to do whatever was needed.   

And then there was the kindness of strangers. Two women, who didn’t know me and had just met my brother the day before in the class he was teaching, went way above and beyond. One helped me coordinate with his hotel, employer, and car rental company, being my eyes and ears onsite, to ensure his belongings and company’s equipment were secure. The other woman went to the hospital to be with him. She called me as the emergency unfolded and assured me, as long as he needed someone with him, she would not leave his side. It’s hard to describe the comfort it brought knowing that during this medical emergency, he was not alone.

True to her word, she put her day on hold and sat by his side for hours, reassuring and keeping our family updated. Eight hours later she finally went home, and then checked in with him later that night and visited him again in the morning. 

These women were so caring and generous. In a similar situation, could I be that unselfish with my time?

 

At a time when we are bombarded in the media by so much hate and fear our family was so touched by the kindness of strangers. Too often negativity is so loud, it drowns out the positive. My brother’s medical emergency put my sadness in perspective. These women rekindled my hope and gratitude. They turned the volume way up on kindness, reminding me there’s a lot of good and compassion out there and so much to grateful for. 

HAPPY SEPTEMBER

 I have a bittersweet love for September. On the sweet side is the influx of skimmers, relief from humidity, and the sunny robins-egg blue sky—the best of summer’s weather as long as hurricanes behave. 

The bitter is summer’s looming end, begging the question; on which side of the list do quieter beaches belong?

Sure, I love that with fewer tourists parking will be a non-issue until next May or June. And yet, I admit it. I may be the only year-round-local who actually misses the tourist and laments that September means that for the slocals—the down-all-summer-locals— it’s time to pack-up and go home.

To make sure this September the sweet out-balances the bitter, I’m celebrating a few extra holidays from a quirky September holiday list I found on line.

In honor of Read a Book Day  on September 6, and International Literacy Day on September 8, I’m celebrating with a chance to win books giveaway on my Facebook Author Page. Follow this link and look for the Happy September Giveaway to enter; http://www.facebook.com/#!/pages/Carol-Fragale-Brill/112297472164769

A couple of other quirky holidays you may want to celebrate with me:

• September 3 International Bacon Day —A day to celebrate bacon! Who knew?
• September 13 Positive Thinking Day —Because who can’t benefit from a few happy thoughts?
• September 18 Wife Appreciation Day —Just happens to coincide with our 34^th Wedding Anniversary. How cool is that?

The stores may be displaying Halloween, but I resolve to enjoy September one day at a time. How about you? What are the things about September that mean the most to you?

P.S. Don’t forget to enter the giveaway contest at http://www.facebook.com/#!/pages/Carol-Fragale-Brill/112297472164769

Is it Time to Stop and Listen?

I know I am not alone when I say I am distressed by the hate and violence in our country and our world. There is so much angry emotion swirling “out there.” I’ve mostly kept my concerns to myself, rather than provoke angry rants or put others on the defensive. After so many years in Human Resources, I have an over-developed sense of being politically correct and don’t want to risk offending others.

And, yet.

Each new act of violence, name-calling, and finger-pointing strengthens my belief that words can help us fix what’s broken and heal this divide. But only if instead of repeatedly arguing our own side, each of us could stop and listen—REALLY listen.

 

There are certain issues, like gun control and which lives matter, that I feel strongly enough about that I immediately slip into defensive mode when I hear an opinion that is different from my own. I want to learn how to take a deep breath, ask people with differing opinions questions that help me understand why they feel the way they do—to commit to not just hear but really listen.

I don’t want to just add my voice to the fray and rhetoric. If I’m going to speak up, I want my voice to make a quiet difference.

What do you think? Is there a way we can dial down the anger and frustration, have the courage to listen to understand each other and build a middle ground?

 

Remembering Dad - The One That Got Away

I am four or five, riding the subway with my Dad, because he is still a couple of years away from owning his first used car—a 1953 or ’54 Chevy. I bounce on his shoulders, knees pressed against his ears. His hard-work hands circle my ankles as he paces along the platform. At that height, I am nearly eye level with the Chicklet vending machine. He digs two pennies from his pocket and I plunk them into the slot all by myself. The little yellow box with two Chicklets tumbles out and he lets me chew both.

Riding the merry-go-round at Hunting Park, I reach for the brass ring each time we go around. Daddy holds my waist so I stretch as far as I can, knowing he won’t let me fall. My arms are always too short.

 

I lay across his sturdy hands in the ocean, flapping my arms and kicking my legs, learning how to float. Later, he pushes the blue canvas stroller I am at least a year too old for, and trots from one end of the boardwalk to the other.

I climb to the very top of the monkey bars at the playground willing myself to strap my legs over the bar and hang upside down. Daddy watches from below. He never seems disappointed that not once am I brave enough to lock my knees, trust my legs, and let go.

At my Girl Scout meeting, the leader needs volunteer drivers for our next outing. Dad owns the Chevy by then and I know without having to ask him that he will say yes. I proudly raise my hand.

We are in the living room. It is sometime after the brain surgery that made it hard for him to talk. He scrunches his eyes, gestures with him arms. He struggles to squeeze out words that I do not understand. Finally, I figure out he wants to know how I’m getting to Girl Scout camp. I tell him my uncle, his brother, will drive me and a smile spreads across his face. He will never walk, or talk, or drive again, but inside, he is still my Dad.

The Father’s Day right after that would be our last. I was twelve when he died and Father’s Day has always been hard for me. Most years, I just try to ignore it.

There’s a line in my novel, CAPE MAYBE, where the narrator, Katie says, “I don’t remember my father, but I miss him as if I do.” Unlike Katie, I did get to know and remember my Dad. He was burly, consistent, and dependable, a mystifying balance of gregarious and reserved. Because he died when I was so young, all of my memories of him are tinged with childlike awe. I wish my adult self could have known him, even if that means I would have learned he had some flaws.

You hear people say, “A day doesn’t go by that I don’t miss him.” The truth is, I don’t think about or long for my dad every day. But even after 50 years, there are many days when the ache of missing him is so raw, it still feels new.

A friend who also misses having her dad in her life referred to him as the one who got away. That really struck a chord with me. Does it resonate with you too?

 

Scanxiety - Living Large Beyond Stage 4

 

Yesterday I got the happy results of my third set of scans. Almost two years post-surgery and closing in on 18 months after chemo and radiation, the results are negative—meaning no evidence of cancer—so positive for me.

My entire body heaved a gigantic sigh of relief.

Living beyond cancer requires never-ending attitude adjustments for me. Days go by now that I feel “normal” and hardly think about cancer. As if, having had cancer didn’t really happen to me.

And then there are the days between scheduling a scan and getting the results, what another cancer thriver aptly labeled Scanxiety. It’s as if having the scan sets off a little time bomb in my head, tick, tick, ticking with fears of the worst threatening to go off.

When scanxiety sets in, the first thing I try to do is follow a social worker’s suggestion to look at FEAR as False Evidence Appearing Real. Because I’m a writer and can’t help myself, I edit the F to Fiction. When morbid thoughts take over my brain I remind myself it is Fiction, like a chilling novel, pretending to be real.

On my worst days, I need more. Thankfully, one constant during this experience is, on any given day, if I stop to pay attention, I get exactly what I need.

I had my scans last Thursday. By Friday I was in cancer freakin’ meltdown mode when I came upon a feather on the beach. In case you don’t know, my friend, Sister Nancy taught me that feathers are blessings. The one I found on Friday was long and silky, the biggest feather I have ever found. That sudden supersized blessing coaxed me back to solid ground.

Last night, for the first time I saw a six month old message from a woman who worked where I did almost twenty years ago. She wrote because last October, she read my article about moving beyond cancer in the Philadelphia Inquirer. She shared that seven years ago, she had been diagnosed with Stage 4 breast cancer that had spread to her lymph nodes, lungs, bone, and brain. Seven Years Ago. And she is still thriving and loving her family and friends—living proof there is life well beyond stage 4.

If your knowledge of Stage 4 cancer comes mostly from TV dramas and novels—like mine did before my own Stage 4 diagnosis—you may think of Stage 4 as gaunt and gray and bedridden, hovering at death’s door. That’s the way I thought of it “before” and some days that old myth is still really hard to shake.

It’s those hard days when I most need to be open to the lessons around me. If you ask me why I just saw a six month old message, my only answer is this. Some power out there greater than me rigged it so I saw it when I most needed the reminder that life goes on after Stage 4 and I am living large.

Living on Vacation

A few days before Jim and I left for Florida, my brother called to wish us a happy vacation. After a slight pause he added, “Wait, you’re retired and live in Cape May. You LIVE on vacation.”

Hum, is retirement in Cape May the same as living on vacation?

Two years into retirement, I still feel like I’m learning the ropes. When I first retired, I worried there wouldn’t be enough to keep me busy—that I’d be bored. Early on, my biggest challenge was learning to stop multi-tasking and over-extending myself and to get better at saying no.

Now that I’m getting the hang of it, I’m amazed at how much I savor the gift of time.

This memory about my mom helps to explain my point. My mom lived two hours away in Philadelphia, and visiting her took planning. One day I called to arrange a visit and told her I thought I could take a vacation day from work the following Tuesday or Thursday.

She said, “That won’t work, I have senior citizens on Wednesday.” When I repeated that it wasn’t Wednesday but Tuesday or Thursday that I wanted to visit, she said something like, “No, can’t do it. Two days in a row is too much.”

Back when I was working 10-12 hour weekdays and earning an MFA and writing novels on the weekend the resistance to doing something two days in a row struck me as absurd.

Now, two years into retirement I get it. The days with nothing on my calendar give me a perverse guilty pleasure. What a sweet surprise to find how much I relish slowing down and doing one thing at a time.

There’s still real life responsibility in retirement so it’s not exactly living on vacation, more real life without the  grind of a day job.

There’s an indescribable wonderfulness about real life without work. Add to that, getting to live in magical Cape May. It may not be vacation, but it's priceless.

HAPPY LEAP DAY

Leap Day February 29, 2016 is here. How will you spend your bonus day? 

I have a couple of cherished memories about how I’ve put mine to good use in the past. Both stories come out of my mistakenly comingling Sadie Hawkins and Leap Day traditions.  The first story from February 29, 1972 is published today in the Philadelphia Inquirer.  http://www.philly.com/philly/opinion/20160229_The_Big_Apple__Frank__and_Sadie_Hawkins_Day.html
 

The other story is about Leap Day, 1980, a few months after I met Jim. Many of you know, it was love at first sight for me, and, for him, love at not so fast.
 

By February 29, 1980, Jim has been calling often for long phone chats, but hadn’t asked me on a "real" date. Eager to move things along, I decided to have some fun with the Leap Day tradition that a woman can propose marriage and if the guy declines he has to buy you a dress.  

This was back in the day of dot-matrix printers, when computer paper was a continuous role of pale green and white stripes with pin holes on the side. With help from a computer savvy friend, I created a 10+ foot banner. Because I mistakenly thought Sadie Hawkins Day was another name for Leap Day, the banner I mailed off to Jim said, “JB, Beware of Sadie!!!”  

A little forward? Maybe, but it got the point across. Still took him until June to ask me out on that first “real” date, but from that day on, he knew, even if I got the tradition wrong, he was my Mr. Right. 
 

And, he still is. BEST USE OF A BONUS DAY, EVER.  
 

Enjoy and make the most of your bonus leap day.

Here's the link to my story in the Philadelphia Inquirer:

 http://www.philly.com/philly/opinion/20160229_The_Big_Apple__Frank__and_Sadie_Hawkins_Day.html

 

Fake It Till You Make It

In my years in a 12 step program, I often heard the phrase, “Fake it till you make it?” For me, it means even if you don’t feel ready, or confident, or hopeful, you act as if you are by doing what you would do if you were. Faking it by acting as if is great practice until being ready or confident or hopeful becomes real.

I’m just beginning to realize how often fake it till you make it was a lifeline for me over the last 18 months. The day I was diagnosed with uterine cancer, a boulder of fear and projection took up residence in my chest. Many mornings, that weight was the first thing I felt when I opened my eyes. My over-active imagination and sense of worry didn’t help. I’d cajole myself to close my eyes again and instead of imaging the worst, envision what I’d feel like if I felt hopeful—as if cancer had never happened. Then I’d try to act as if. Most days, faking led to lessening the weight and genuinely feeling more hope.

One morning a couple of weeks ago, I realized it had been a few days since I woke up feeling bogged down by that ever present stone.

Feeling almost-serenity instead of anxious is new and fragile—I still don’t totally trust that it’s real. One day at a time, I’m encouraged to keep faking it until I wake up one day to find serenity has taken up residence and evicted worry and fear.

I hope you'll share in comments what thoughts and worries weigh you down, and what it would take to fake it and act as if. 

And, what experience can you share about how fake it till you make it and acting as if has worked for you?