Presence and Absence

I always come away with new information after Art a Whirl, our big open studio event. People frequently recommend books on topics related to art or on the topics I am exploring in my artwork. At our recent AAW I had a long conversation with some visitors about ambiguous loss, a term that was coined in the 1980s by author Pauline Boss. Ambiguous loss is exactly what it sounds like, a loss lacking clarity, hence a loss that doesn't conform to the structures we have to help support those experiencing loss. Responses don't fit the expected grieving pattern because the loss lacks clarity and finality.

The collapse of the World Trade Towers is a perfect example of ambiguous loss, We have had other recent examples with planes disappearing into the ocean. In these cases we have a physical loss, but without confirmation. Gone, but not gone.

I was interested in this concept because I often experience the reverse. Here, but not here. As my mother lives with Alzheimer's she is here physically, but not always fully here in other ways, at least not in the way to which I had grown accustom.

Unlike a loss with clarity, ambiguous losses may drag on for an extended period and lack a means to acknowledge grief. I recently picked up Boss's book Loving Someone Who Has Dementia and was intrigued by a quote she shared by F. Scott Fitzgerald.

The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time and still retain the ability to function. The Crackup 1945 p69

It is the ability to deal with ambiguity. Those of us who are Js on the Myers Briggs probably don't fare too well in this department. We like our clarity, but fortunately this is an ability that seems to grow with age. Those of us who have difficulty with ambiguity often seek control of our surroundings, but if we live long enough we learn that any control is largely illusionary. The world is filled with grey and the absolutism of youth takes on tonalities.

The only certainty with Alzheimers is that it is a progressive disease. It will unfold as a series of gradual losses. Boss writes of how those who cannot deal with ambiguity either deny the illness or write the person off. The former may say,"oh it's just normal loss of memory from aging". The latter may say "it's not worth me visiting as she won't know the difference". In either case it is a forced clarity even if it is an incorrect one.

My sister and I talk about this a lot relative to our mom and I think we are reasonably grounded in our approach. We love our mother in whatever form we have her and are both reality based, "It is what it is"- our mantra. Between those two premises we find our path by supporting my mother as she goes through this process and supporting each other. I often think how much more difficult this would be if I wasn't sharing it with my sister. We have a sense of my mother's essence that we continue to appreciate. I try not to think of what is gone lest I fail to appreciate what is still in front of me.

Boss writes of an accountant who had a low tolerance for ambiguity and struggled with his father's Alzheimer's. What served him well professionally was very counter-productive in dealing with his father, no doubt true of me to some extent. A career with numbers often attracts those drawn to control. I have often struggled to let go of that side of myself in creating artwork. Creativity is born out of the unknown, it is about feeling our way, uncertainty, ambiguity and exploration. And perhaps my creative work has ultimately helped me deal with the duality of my mother's experience, this thing I have absolutely no control over. Here, but not here.

The brain doesn't like ambiguity. It works hard to resolve it. When frustrated by the duality of absence and presence it frantically seeks resolution. As a culture we value mastery and control. We seek closure. We are also a culture that denies death and that causes dementia to be frightening. There is much ambiguous loss in the roots of American culture. Boss proposes that as a nation we are founded on unresolved grief. Immigrants left their family behind, often to never see them again. Slavery was also an engine for ambiguous loss. It occurs to me that the Jewish community that I explore through family history research is seeped in unresolved grief, whole communities wiped off the map during the Holocaust.

So how do we move forward when caught within this duality, presence yet absence? Boss advocates curiosity and it occurs to me that painting this experience is my way to explore it, to bring my curiosity to bear. I hear my mother's words and emotions and consider what imagery they conjure. To paint someone's experience you have to imagine it, to ponder what it feels like. Sometimes that takes me too close to the flame. It can be a frightening place. In every parent's experience is the often unspoken fear within their child that we too will share it some day.

I often find reading about Alzheimer's challenging. It is too close to home as I participate in my mother's journey. But this approach to the subject is intriguing to me, considering the roots of ambiguous loss in our culture, our brain's resistance to ambiguity. And of course I find myself considering how I would paint ambiguous loss.

Sometimes Yes, Sometimes No

Just when I think I have this reinvention thing figured out, I discover I have to learn a new trick.

When I first left my job and decided to dramatically refocus my energies, I soon discovered that saying yes to things I might have previously avoided opened many new doors.

My first yes was to delivering a talk. I didn't like the idea of public speaking any more than most people. I'm a shy person although people often don't believe me now when I say that. Apparently I've learned how to masquerade as an extrovert. Put me in a room filled with people milling about and you will soon see my introvert assert herself, but give me a microphone and center stage and I step into my inner performer. I didn't know that about myself and it has been one of my delightful discoveries along the way.

That was eight years ago and half way through the year I'm on schedule to do ten talks so far. I've learned that once you step through that door you have to keep practicing that skill. That is especially true of public speaking so I keep myself out there and speak about a variety of topics.

Reinvention is a mix of creating opportunities by actively seeking them out as well as responding to those that knock on your door. And some of those that knock don't always present themselves as the major door opener that they prove to be. For a long time I said yes to those knocks on the door just to see where they might take me. It all seemed like a grand adventure. 

Lately though I've been noticing a change. I've started to say no. I've begun to create CRITERIA! If you say yes often enough you create a lot of activity. Some of it is meaningful, some of it less so. I have a better sense of those things that can be time drains and I have personal goals on which I want to focus. Sometimes I feel like that proverbial crow drawn to a shiny object that can distract me far too easily and yet...I've learned that sometimes that distraction is important and opens a new door. How do I discern a distraction from a door? I'm not sure and the fact is a distraction can be a door also. It may well be an opportunity that I'm saying no to and I hesitate each time that I do that, but I need to preserve room for the opportunities on my plate.

So what about these criteria? I've realized that public speaking takes time, even on familiar subjects, but especially when developing new material. Like many shy people who present publicly, I prepare. Actually I over prepare. I rehearse until I can speak spontaneously. I design my visuals and handouts. I work hard at my talks and that takes time. In addition to actual time, public speaking takes psychic time and energy. It will never be an effortless expenditure of energy for me so I need to be careful about my mix of activities and realize that time takes many forms. There is time to prepare, time to present and time to embrace your public persona. I suspect extroverts need less of the latter, introverts need a lot.

Recently I've turned down some speaking engagements, some that were at times when I needed to leave time for creative energy for artwork or writing and others which weren't in my sweet spot. I mention creative time because I've learned that it isn't the same as calendar time. It starts with calendar time being available, but it doesn't work on anyone's schedule, including mine. If I have a creative project I need to leave time for things to bubble up when they're ready. So I need a buffer of psychic time for speaking and bubble-up time for creative work. Then there are all of those things that just take good old fashioned time, often more than we anticipate.

One of my projects involved doing 17 oral histories out of which I developed artwork. Now "doing" means creating questions, drawing out my subjects in an interview, video recording, transcribing, editing the video and creating documentation. While I had grants to do them, I put in many additional hours and it proved to be a much bigger project than I had imagined, albeit very meaningful. Now I often have people tell me they have someone interesting for me to interview and I have no doubt that they are, but I'm done with that. It is a huge commitment of time and not inexpensive if I were to get paid for that time. And then I remind myself that even if they paid for my time, I'm not in search of money making projects. I am in search of projects that take me in certain directions related to my artwork and writing and there is a choice about how I spend my time. So one of my criteria is purpose. Not just is it worthwhile or meaningful, but does it advance my purpose. And so I've turned down interview projects with some regret. I always hate to walk away from a good story.

And about those money making projects...even while working on my many creative projects, I've often done consulting projects in my old field of finance. Each time I do one, it takes awhile to get myself back into that space. I still enjoy the problem solving aspects of the work, but it is not where I find my larger meaning in life. When you are immersed in that world you don't spend much time thinking about larger meaning. Your focus is on making a living and you are absorbed in that world. It took me some time to unhook from that and it has become harder to re-enter that space. Part of the difficulty is in giving up control of my time. Time and flexibility have become more important to me because I have other things I want to do and money is no longer the yardstick.

When I got a call on a job the other day, I had a different reason for saying no; the often stated "I want to spend more time with my family". In this case family meant my mother who is in her late 80s, 500 miles away and experiencing changes in living arrangements and health. I am well aware that this is time for which I don't get a do-over so want to be there for her. She needs me more now and I am fortunate to have control over my time to make myself available.

So I've become more discriminating in what I say yes to, weighing time, priority and purpose. And yes, I realize it is a luxury to even be able to think about purpose and I am very grateful to have those choices.

Untethered

I've had a routine with my mother for a number of years. I call her in the morning to check in. Gradually our calls have devolved into a few minutes in which I tell her which aide is coming when. Actually I call to make sure she answers. Sometimes she doesn’t. Usually that means she doesn’t hear it over the TV which is turned up because her hearing is poor. I always panic when that happens, fearing she has fallen or worse.

Part of me is always awaiting the "worse". That phone call from my sister, the nearest and hence the early responder.
"Come now. Something is wrong." 

We got that call for my father a few years ago. Jumped into our car and drove through the night. Even though I knew his kidneys were failing on my last visit, knew death was imminent, I still responded, "Oh my God, oh my God!" It's never real until it's real.

A few days ago it became real once again. My sister called and said,"I think Mom is having a stroke". She described the symptoms, but I heard nothing after "stroke". Fortunately she was with my mom and knew to respond. I spent the day making flight arrangements and feeling like I was moving through molasses. I didn't know what to do with myself, unable to calibrate my response to this potentially serious yet still unknown situation.

I thought back to my recent calls with my mom. There had been a change as of late and my sister and I had begun to talk of how we could better support her. My mom had startled me recently when she said. "I'm confused, something isn't right".

"What isn't right?" I asked.

"I was napping" she said. "I'm in my own home," she noted, like a person who has fallen and is taking inventory. No broken bones. All intact. But she adds, "It doesn't feel like I belong here."

Then I got evening call duty, filling in for my sister who calls her in the evening. Evenings with Alzheimer's are worse as the brain gets more muddled. My mother was having a hard time remembering relationships or even when she last saw my sister (the prior day). She knows she's confused which I think is the most difficult stage of this disease. She still remembers that this is not the norm. 

"Hold on to me" she said. My heart aches for her. We talked about how things have gotten harder for her. Just acknowledging that seemed to calm her. "I'll always hold on to you," I said.

I mulled over our conversation. Her home of almost sixty years had a feeling of unfamiliarity. No longer anchoring her by its pull of memories. She's come untethered. And then I thought, "What would that look like?" I pictured her floating above her armchair. The ties that anchored her tightly releasing her like a flower blooming or a hand opening up to release her. She is looking down, her mouth an o of surprise, her limbs floating out around her. Her cat looks up at her wondering what is going on.

I have a sketch program on my iPad and I do a quick sketch of this image with my finger on the screen. A few quick lines on a black background to hold that thought. It is a dark void that she is floating in. Then I set it aside, the idea captured until I can consider next steps. So much easier to consider next steps for a painting than for my mother. "Hold on to me" echoes in my mind.

Next steps are often forced by events out of our control. My sister and I have spent the last few days in a hospital room with my mom. She did in fact have several small strokes, but recovered quickly due in part to my sister's fast thinking. And I do mean FAST. My sister recalled an acronym that is used to identify a stroke. Well she kind of remembered it. She remembered F and A and then debated if the acronym was FACE or FAST. So this is my public service announcement. It is FAST which stands for Face-look for an uneven smile, Arm- check if one arm is weak. Speech-listen for slurred speech and Time-call 911 right away. My sister got as far as A and noticed my mom's arm wouldn't move and jumped directly to T and called 911. 

We've spoken with many health care professionals in the last few days. We especially appreciate those who are good communicators and find the nurses often excel at this. We also appreciate those who can use humor and warmth to engage my mother. We will have more decisions to make in the coming weeks, but are relieved that my mom now seems to be OK, but tired, hit by a truck tired. We joke that it was only a car in this case as she withstood it fairly well. We want to prevent a more serious stroke so my sister and I are working as a team in sifting through medical information. We are both information junkies so after we speak with a doctor we go to our respective computers and read up on treatments and medications, then convene a decision making session. It is good to have a team.

My mother feels more untethered than ever, confirming periodically where she is and what happened to her. Forgetting and then confirming it once again. Medical situations are challenging even when your memory is intact. Having to gain that understanding over and over is especially taxing. The coming weeks will be full of changes for her. We will be there for her with our love and our presence.