Saturday, December 31, 2016

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.