Sunday, October 29, 2017

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?

Monday, April 10, 2017

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?

Sunday, March 5, 2017

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.

Thursday, February 23, 2017

What Do You Do When Illness Interferes with Sex?

A reader wrote in describing a not uncommon situation when you're living with illness.  He, the well partner, wants to be sexual, and the ill partner doesn't or can't.  He is asking for advice.  I posted mine below.  What advice do you have for him?
(btw - here's a link to a previous post and series of comments on this topic:

He wrote:

"My wife has severe anxiety and depression. She refuses to take medication and as a result, finds it hard to even make it through the day. Sex is the last thing on her mind. We haven't had it in 11 months. I'm only 25! She doesn't even masturbate or anything often. Maybe twice in the last year. We have an open relationship so I have sex all the time, just not with her. I miss her so much in that way. She feels bad and acknowledges it but it sucks. Because it's not an illness I can physically see, sometimes I feel like she's being dramatic. Any advice is appreciated."
My advice to him was this:
"I can understand how unhappy it makes you to not be able to have sex with the woman you love. I can't help but wonder why she refuses to take medication. Is she in therapy? It's very real and very awful to live with your experience of life tainted by anxiety and depression. And sometimes having an invisible illness makes it even harder.

An important action is to stay in communication with her about this. She may not be interested in sex, but she is still your partner and talking about what is going on for you, and for her, is an important way to stay connected. Holding a problem together is better than having the problem keep you apart and in silence. A therapist may be helpful with this. And if she isn't open to therapy, you could still consider a therapist or yourself - you are hurting and deserve support and understanding.

Also - I wonder if there is any kind of touching she would consider, maybe enjoy. Non sexual massage? Back rubs? Foot massage? Starting in a non-sexual place may help defuse some of the tension around sex, and may lead to an ability to experience touch as enjoyable. I also wonder if she might be able to offer you some form of touch, non-sexual or sexual, even if she does not enjoy it herself.

Lead with love. No shame or blame. You are both hurting and are deserving of compassion."

Saturday, October 29, 2016

To Talk or Not to Talk?

Illness is such a thief.  It can take away so much of what we consider vital.  It can take away the peace that comes from taking the ordinary for granted.  It can steal intimacy.

Illness depletes, but it also deposits.  It inserts all kinds of emotions, at levels of intensity that can be blinding.  Illness awakens fear of tragic loss,  rage at incremental loss, loneliness, out of controlness, and perhaps worst of all, hopelessness.

For some, perhaps many partners, illness can also act like a laser slicing through the noise and the irrelevances of daily life and can illuminate the essential.  There is nothing quite like illness to help you to sort through the chaff and the wheat and to decide what really matters.  Hopefully that's love and compassion.

Talking to each other, and to others, is the lifeline.  It helps us thread the morass and stay tied to something real that can be a source of connection, even comfort.  Saying aloud to your partner, to your friend, what you hate, what you still love, what you want, what is still possible, where you keep your hope, how you struggle with you hopelessness -- can be sustenance.

We fear that if we speak our inner truths aloud to our partner (be they well or ill) that it would only add to the already intolerable burden.  That it would cause harm.  This fear comes from the connection that still exists, from the desire to serve and to help.  The irony is that in not talking about what is growing larger inside, you become more distant and wind up focusing on superficialities at a time when you need each other the most.

This is not a call to blurt it all out, with all the cutting edges sharpened.

Find your compassion for your partner and for yourself.  Find a moment when there is time and quiet.  Listen and ask as much as you speak.  Let your love seep in wherever possible.

One of Richard's and my mantras is that what doesn't get spoken doesn't go away.  It just goes underground and gets acted out instead of understood.

Have you and your partner found ways to have the difficult, reconnecting conversations?  What have you tried?  What's been the impact?

Saturday, September 10, 2016

Love Through Cancer

I've read articles about couples who commit or marry, and soon afterwards one partner receives a cancer diagnosis.  And other couples who commit or marry knowing that one has cancer.  Some of them tell stories of reaching levels of accelerated intimacy and authenticity that they believe wouldn't have been possible had it not been for the illness.  Others get lost in the maelstrom of hospitals and intervention, and they live their life at the crossroads of chemo and uncertainty.

I now know two people who are at the beginning of their love and cancer story.  They were both married before, and both lost their spouses to illness.  They know the caregiver role well.  Now he knows the patient role.

They met about a year ago, and their rhythms were a great match.  They are both smart, funny, and welcoming.  She's animated and active; he's more pensive and accommodating.  He wraps her in his larger bear of a body, and she curls, catlike, in his arms.  They suit each other.  And they have come to love each other.

Several months ago he was diagnosed with cancer.  In fact with two different cancers.  Sounds bad, but the doctors are hopeful surgery can eliminate both -- once the tumors are shrunk though chemo and radiation to a surgical size.

They recently decided to get married.  I haven't asked them why.  I imagine it has to do with love, and giving, and caregiving, and a vision of hope.  I applaud them for doing the normal thing in a situation of such............

Readers of this blog have deep experience with illness and its demands, and the hard, and often special paths it takes us down.  What thoughts or guidance would you offer this couple?

Friday, August 5, 2016

When Illness Changes Intimacy

I wrote a post about this topic a while ago, and readers are still offering comments.  I think this is the case because illness and sex is a common but often closeted aspect of living with a serious health condition.  When illness becomes the third partner in the relationship, it infiltrates into the living room, the check book, the social calendar, and the bedroom.  If the couple is older, or younger, the intimacy-illness equation gets even more complicated.

I am linking to the original post.  But more important than the post itself are the comments.  I thank all those who shared their situations and heartaches, and solutions.  I hope other readers find community and some comfort in knowing that we are not alone.  Here goes:

"What do you do when your partner is no longer interested in or capable of sexual intimacy with you?

Illness takes many tolls, on both partners.  One of them is too often sexual intimacy.  Medications, pain, and exhaustion can not only turn a libido off, but can make intercourse painful for the ill partner.  The well partner may be just too drained after a long day of caregiving, working, caring for kids, and running the household to want anything more intimate than falling asleep side-by-side.  And the shift illness produces in some partner relationships -- turning a bond of equals into one of caregiver and patient -- can make sex feel like a taboo."