THIS BLOG HAS MOVED TO A NEW WEBSITE

Hello everyone.  I am retiring this blog for good reasons.  My book has gone into a second printing with a new title --

 LOVE IN THE TIME OF CHRONIC ILLNESS: HOW TO FIGHT THE SICKNESS, NOT EACH OTHER

And this blog is moving to live on the website for the new book.

To visit the new website:

https://loveinthetimeofchronicillness.com/

To go directly to the blog:

https://loveinthetimeofchronicillness.com/blog-page/

I hope to see you there!

Special Photos of a Couple Living with Cancer

Wonderful photographs done by Nancy Borowick of her two parents both diagnosed with cancer, as they go through treatments and daily life, side-by-side.

http://www.abc.net.au/news/health/2018-05-12/nancy-borowick-photo-exhibition-captures-parents-cancer-stories/9747420

These touching photos document the sadness, the closeness, the grief, and the humor that become all the more powerful when end of life is a near term reality.

Love in the Time of Chronic Illness

I wanted to let you know about the reissue of my book under the new title: Love in the Time of Chronic Illness: How to Fight the Sickness Not Each Other. 

The book is a deep and practical guide that helps couples, and any patient/caregiver partners, stay connected and grow even stronger as they cope with the powerful effects of illness or trauma.

If this experience touches you or someone you know, I encourage you to pre-order this book on Amazon, in either Kindle or print versions.  While the book will officially be available on June 12, pre-ordering now will help boost the book's visibility.

Love in the Time of Chronic Illness has many stories from couples who share the lessons they learned about living with illness or trauma:

• Frank and Linda, whose stroke caused them to rebalance their relationship in new ways
• Abe who, after being Betty's primary caregiver for 30 years as multiple sclerosis stole more and more of her abilities, decided that he had to bring joy back into his life
• Francis and Ted, who discovered levels of intimacy and authentic communication they believe would not have been possible without the intrusion of her chronic pain condition
• Robin and Chuck, who used "active coping" to stay as close to "normal" as possible during his battle with cancer 

You'll also read the advice of a range of experts who offer many strategies for coping - emotionally and practically.  This new edition has an additional chapter for health care providers and health care organizations. Finally, strangely, for a book about such a serious subject, it's a good read.

So, if you know anyone going through this experience, or if you just want to help launch this important book, please pre-order the book on Amazon. If you like the book, I would greatly appreciate your writing a positive Amazon review. Here are some reviews that were written about the earlier version of this book.

Thank you for for anything you can do to help get the word out about Love in the Time of Chronic Illness.  The experience touches so many of us, and this book can really help.  If you can, please forward this email, and post on Facebook and Twitter. 

Asking for Help

Long ago I made a deal with my body that only one thing could go wrong at a time.  In exchange, I would do my best to take care of my body by eating well, exercising regularly, and taking a handful of nutritional supplements every day.  I was suckered.  Over the years, my body reneged and multiple things started going wrong at the same time. There was nothing I could do about it.

Now, I am dealing with periodic flares of my chronic pain condition and am on the threshold of having hip replacement surgery.  I think the hip and the pain condition made a secret deal to aggravate each other to ensure that I would take neither one for granted.

I'm anticipating that the hip surgery will relieve the hip pain, but may incite a flare up of my "normal" pain condition.  Richard, my sweetie, reprimands me when I think this way and, momentarily, persuades me that this outcome is unlikely; and it is just as likely that I will be free of both pains.

But I know better.  Or at least if I hold onto the likelihood of having a pain flare post surgery, I won't be surprised when it happens.

I am also anticipating that I'll be miserable and physically impaired for a while.  I'll need help.

Richard is unwavering in his desire to be by my side and help in any way he can.  It's usually me who plays the stoic card and thwarts his attempts.

But surgery is a big deal.  I'm admitting I'll need his help.

The hitch is that a few weeks after my surgery he has plans to attend our soon to be nephew-in-law's bachelor party in Las Vegas.  Richard and our nephew-in-law to be have a tight relationship.  They can geek together and spout Monty Python lines at each other.

I fear that I still won't be able to manage without Richard when this weekend arrives.  Can I ask him to forgo the celebration to stay home and help me navigate around the house and pick up my crutches when they fall?  Can he go on the trip and enjoy himself knowing I'm at home, hurting, and struggling?

Asking for help gets so complicated.  I want him to stay home with me, but don't want him to miss the party.  He wants to go to the party, and be by my side.  A bunch of impossibilities.  If I ask him to stay, he will - no grudges attached.  But I'll feel like a villain for depriving him of a good time.  Even if he chooses to stay without my asking, I'll still feel like the great depriver.

A real conundrum.  I think the only way through this is for each of us to honestly say what we want and be as understanding and as accommodating and loving as possible - whatever the outcome is.  (Easy to say, right?)

What would you do?  How do you deal with asking for help?

The Downs and the Ups

It's been a long time since I've posted.  Usually when I go into  silent running mode it means I am having a massive pain relapse and all my attention is dedicated to trying to stay one nano-step ahead of the pain.  It also usually means that I no longer feel a part of humanity.  Nor can I bear being exposed to the normalcy of others' lives.  Their ability to take things like walking, watching the World Series, opening a can of tuna fish, even breathing for granted feels like a mortal blow.  So I sink into deep stealth mode.

But that's not what's been happening.  Well, not entirely.  I am climbing out of a pain relapse.  But even at the outset, I knew that I would.  And I am learning to befriend the panic that usually accompanies a relapse and offer it enough reassurance so that it calms down.  I am not sure where my confidence came from.  Maybe after seventeen years of downs and ups I have come to rely on the ups as much as I've always been certain of, even counting on, the downs.

What has remained constant, and needed, is someone outside of my twisted relationship with pain to hold the hope.  Richard, my sweetie, has always been able to do that, with genuine, scientifically grounded belief.  As a scientist and engineer, he always believed that there had to be something in this universe that would alleviate my pain.  In the earlier days, I could only believe that the torture would be endless.  I needed him to hold the hope because I didn't have any.  In fact I didn't want to have any hope.  Hope was just a tease, a false trail leading only to more pain.  And if I climbed up to hope, the drop back down to more pain would be even sharper.

Now, it seems, we have entered a new phase.  We seem to be holding the hope together.  Richard is still an unwavering hope holder, his certainty made bolder by the many mini-recoveries I've had.  I'm not even on the same planet as certainty; but I've got a few strands of hope wrapped around my heart.

Do you have a hope holder?  Can you find a spot of hope inside yourself?  How important do you think hope is?

Your Partner's Face

As I climb back out of my recent pain relapse, my husband's face has become even more important to me.  It's more than the face of a morning greeting or an offer to pick up Chinese take out on his way home.

His face has become my anchor and my mirror.   His face is a reminder that there is a world with love in it beyond my pain.  His face is like a siren's song calling me to emerge from my pain cocoon and join him in a moment of connection.  When I see his face I can climb out of the nest I've constructed with pillows and blankets on our couch and know I have another direction I can head in.

His face is also my mirror.  When I'm in pain, I can't look at myself in the bathroom mirror.  All I see is pain and the fear of more pain.  When I look at my husband's face I see more than his pain at my pain.  I see flickers of hope.  His hope becomes my lifeline to the possibility of less pain, even no pain.  His hope tells me the story I want to hear but don't have the courage to write for myself.

Now that I am doing better and have once again tamed my pain with my reliable arsenal of meds and physical therapy, watching his face becomes less urgent, less like a lifeline and more like a place I like to live.

What do you see in your partner's face, whether you are the one with the illness or the one who is the caregiver?  What do you look for when you look at your partners face?  What is there, and what is missing?

F'''ing Relapse

Aw come on, universe.  I was doing so well.  No pain and off meds for over a year.  I had reached the point where I really thought pain was a past participle, no longer an active tense.

Then, for no reason at all, wham.  F'''ing relapse.  Full blown, Titanic crashing into an iceberg.  Why?  Why?  Why?  Why not?????

Maybe it was this nauseating political climate.  Maybe it was thinking about my deceased parents and what they gave me and what they never gave me.  Maybe a butterfly farted in India.

Back on meds.  Most, but not all, of the meds I'd spent over a year tapering off of.  I say not all the meds as if not having to use benzos now is a victory.  Hah!  A victory would be waking up and having it all be gone.  Anything less is just more defeat.

And poor, poor Richard.  He is bent over with helplessness watching me twist in pain.  We play a lovely duet.  I moan, and he stands still as a post waiting for my next move.  Will I lean towards some comfort or slip deeper into pain spasms?  If it's comfort, he breathes; if it's pain he grows more still until numbness or departing give him a break I cannot offer him.

We know this dance too well.  We are blue ribbon winners in this pas de deux, or rather pas de douleur.

My heart breaks for him.  His heart breaks for me.  That's the kind of love that offers us a few rays of light and hope when pain's shadow once again spreads from horizon to horizon.