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?


Lowen Puckey said...

Hope is SO important - the most important thing of all. I love the way you say 'downs and ups' and going into 'stealth mode'. We call it 'safe mode' and 'the bubble' in our household - people who understand are inside the bubble and everyone else is outside. And sometimes it's too painful to step outside the bubble but then on the ups you can gather a bit of strength and venture out. Lowen @

Barbara Kivowitz said...

Thanks Lowen. Really well said.