The States of Grace

This article was originally published in the April 2012 edition of care ADvantage, for caregivers of people with Alzheimer's Disease and related illnesses, published by the Alzheimer's Foundation of America. 

My father’s death on December 22, 2011 did not come as a surprise.  He had been living with Alzheimer’s Disease for the last 7 or 8 years and had not even known me for the last two, so I was saddened but relieved when my sister called to let me know he had passed peacefully.  

Grief	Compassion
Presence	Pleasure

In the weeks after his death, I was stunned by the force of grief which overtook me.  I had thought his death would offer me gentle relief mixed, perhaps, with moderate sadness since I’d been grieving for years already each time his illness progressed.

But instead, after his death, the man I knew in my childhood re-asserted himself in my memory - the man who played endlessly with me and my siblings, who sang and danced in plays, who told stories, who made me feel as adorable and loved as a person can feel.  I can’t forget the hell of his disease, but now that horror mixes seamlessly, relentlessly with the pure, the beautiful.  The juxtaposition of love and resentment and anger and horror and pain and pleasure and compassion is cruel and harsh.  The tears fall unabated.  How can one person hold so many conflicting emotions at once?  How to come to terms with it all?

I am thankful for painting which allows me to express my emotions wordlessly.  It allows me to be with my feelings, to weep as I paint when I need to, to hover in and out of the grief then sway into hue and form and line then back into tears and sadness.   Compassion arises, that gentlest of emotions, as I paint my hand stroking my face and offer myself comfort.  I notice my wrinkles and my graying hair and feel love for the years I’ve lived and the wisdom I’ve accumulated.  I remember times with Dad, listening to him sing, and feel Pleasure at the thought of his young vibrant articulate self and me, a young child, adoring him.  Finally, flush with Grief, Compassion, and Pleasure, I feel utterly drained, empty, and simply Present.  Death does not leave only gentle reminders behind.  Painting is my solace for its residue.

The Faces of Grace

I'm not a sports fan - at all - so I felt no compunction to turn the TV on and join the hordes yelling and screaming for a particular team to win - or for Madonna's top to fall off - or whatever.  I figure I'll get my news and the best clips on FB when it's over.

Instead I painted today.  I finished the third of my series "The Faces of Grace" and re-worked the previous two a bit.  I realized that Compassion was a bit too pink for my tastes, so I toned it down a little bit and neutralized some of the colors.  I don't know if it shows in these pictures or not, but it does in real life!

Tomorrow I plan to at least begin the fourth one - hopefully get it mostly finished - since I will be hanging the show in Williamsburg Thursday, and I would like these to be in it!  Pressure, pressure!  It should be doable as long as I don't get too distracted.

Here are the three pictures:

Grief

Compassion

Pleasure

The fourth picture will go to the left of Pleasure.  The four of them will be hung together, two up, two down.  I plan to hang them together near the first self portrait I did a couple of weeks ago.  They'll all be in the show From Hurt to Harmony which opens next Sunday from 2-5 at the Linda Matney Gallery off of
Richmond Rd in Williamsburg, VA.  You're welcome to attend if you're in the area.

Compassion

Today I created a companion piece to go with the painting I did on Tuesday.  It's called Compassion.

I had very different feelings today than when I painted Grief the other day.  I felt like I was stroking my face and offering myself comfort.  I was noticing my wrinkles and my greying hair and feeling love for all the years I've lived through and the wisdom I have accumulated.  I loved painting my hand, paying attention to the short fingernails, kept that way so I can paint more easily, and the skin which looks ever more like parchment.  I appreciate the feeling of peace in my face and am grateful for the emotions which led me to look this way.

It feels like a blessing to experience compassion after working through the grief.

Grief

It was difficult for me to get to work today.  Or yesterday.  I spent a lot of time "getting organized".  And on Facebook.  And writing "important and necessary" emails about business issues.  Admittedly, the emails were important, but I knew them for what they were - diversions from the work I really WANT to be doing.

There are times when it's difficult to paint because I am afraid to be with the feelings that painting brings up.  Painting is like meditation - an opportunity for previously veiled/denied/hidden feelings to arise because nothing else is there to distract me.  Sure, I'm thinking about hue and value and shape and line and form, but there's plenty of room between those thoughts for feelings to arise.

And my feelings lately have been challenging.  My father died about a month ago.  He'd had Alzheimer's disease for a long time - 7 or 8 years perhaps - so he hadn't been "himself" for a very long time - hadn't even known me for a couple of years.  His wife told me he'd go around the house calling me and my sister at times, but he couldn't name who I was for anything.  So I'd been dealing with the loss of him for a long time.  It is surprising to me to have strong feelings about it now that he's actually died.  Perhaps it's because it put a lid on it.  The finality.  The end.  There's no way some miracle drug can bring him back anymore - not that it ever could, but hope springs eternal.

I can hardly imagine a disease worse than Alzheimer's except perhaps for ALS which relentlessly takes the body while the mind is still intact.  Alzheimer's attacks the mind relentlessly, offering a glimpse into the sufferer's mind every so often, but mostly advancing without pause through memories and abilities and words, then it marches directly into the body and shuts it down, finally, thank God, after taking all there is to take of the brain.  I found it horrifying to watch his demise.  Each time I would see him, he had lost more words, more abilities.  Oddly, though, his gestures and tone of voice remained.  So, though he was speaking nonsense words, his tone of voice remained so I could often tell what he was saying anyway.

Exceedingly articulate throughout his life, Dad suffered particularly cruelly with this disease which first took his ability to find just the right word.  For several years he knew it was coming and the anxiety attending its approach was great.  I was grateful for him when he got to the point where he no longer realized what was happening.  He still knew he couldn't say what he wanted to and would get frustrated, but at least he didn't know he was becoming disabled more and more each day.  Instead he'd shrug his shoulders and say, "Oh well, I don't know that word now.  Blah, la-la-la-blah!"

Eventually the disease began taking away his automatic processes like walking and even swallowing.  That was when the end was very near.  He could no longer control his movement and began pounding his hands into his stomach.  His face contorted into a grimace.  Beautifully, though, right before that final step, he saw his wife and knew her one last time.  He was able to get out his last words to her, "I love you."

Who knows where his mind was or his soul?  Yet even with all that he was present enough to let her know he loved her.  What a gift.

My last visit with him I held his hand and sang to him, songs he'd song to me as a child.  His eyes were closed when I got there but eventually he opened them and looked into my eyes intensely, locked into mine completely.  It was clear to me that he knew me.  It was a gift to be able to see him at that point and to say goodbye.  It was painful to see his body so decimated, but oddly, through all that, his soul was still present, and we were able to meet at that level and say what we needed to say.


I miss the man I knew in my childhood, the man who played endlessly with me and my siblings, who sang and danced in plays, who told stories in my classrooms, who made me feel as adorable and loved as a person can feel.  I'm thankful his body is free of its constraints now.  I wish him well on his journey.

I am thankful for painting which allows me to express everything I just did but wordlessly.  It allows me to be with the feelings, to weep as I paint when I need to, to hover in and out of the grief then sway into hue and form and line then back into tears and sadness.