It's OK I'm not OK

"Death in the Sickroom" Edvard Munch (National Gallery, Oslo)

One of the members of the Facebook group focused on Caring for a Spouse with Dementia recommended Megan Devine's book, It's OK That You're Not OK and I posted a link to this blog (I've been given special permission to post a link) because I'd already started writing about it.  Today I have a bunch of quotes from the book, beginning with a sad thought about friendship:  "And -- it's one of the cruelest aspects of intense loss:  at a time when you most need love and support, some friends either behave horribly or they disappear altogether . . . People say the weirdest, most dismissive and bizarre things" (p. 81)
Many of the folks in the Facebook group complain about this: the absence or pseudo-helpfulness of friends.  A carer might comment that a friend has walked up to the person with dementia and said, "Do you remember me?"  and then watched as the person with dementia struggled to remember.  Some carers use this sort of event as an opportunity to educate the friend.  Other carers will say that this person should no longer be considered a friend.  Then an argument might ensue about whose responsibility it is to educate people who are not walking our walk -- is it the carers or the outsiders?
The issues around friendship and grief are compounded by social media envy.  Sometimes the fun that our friends are having gets under our skin.  Members of the Facebook group have commented about how painful it is to see friends traveling or having parties when the life of a carer is so constrained.
I myself have an old friend who tells me about all the trips he takes to Europe and New York, the plays he sees, etc., yet refuses to share enough details so that I can join in with him vicariously.  I once asked him to describe the wonderful meal he once had in Catalonia and he told me, "I'm not a food blogger."  I wanted to tell him, "What if you thought about this not as food blogging but as responding to a request from an old friend who is currently trapped?"  But I didn't.  What I've wanted to hear him write is, "I'm so sorry you're going through this.  It must be really, really, hard."  On the positive side, he's done what he could with birthday/Christmas presents to give me support with gift certificates to food prep services.  It's hard for folks outside of intense grief to know what life inside it is all about.

Here are a few more good quotes from Megan.

"It's easier to create sets of rules that let us have the illusion of control than it is to accept that, even when we do everything 'right,' horrible things can happen."  (p. 45)
"The most efficient and effective way to be 'safe' in this world is to stop denying that hard and impossible things happen.  Telling the truth allows us to connect, to fully enter the experience of another and feel with them.  Real safety is in entering each other's pain, recognizing ourselves inside of it." (p. 55)
"We can never change the reality of pain.  But we can reduce so much suffering when we allow each other to speak what is true, without putting a gag order on our hearts. . . .We can stop hiding what it is to be human.  We can craft a world where you can say, 'This hurts,' and have those words simply received, without judgment or defense." (p. 61)
"We have to find ways to show our grief to others, in ways that honor the truth of our own experience.  We have to be willing to stop diminishing our own pain so that others can be comfortable around us." (p. 62)