"Sherman made the terrible discovery that men make about their fathers sooner or later. . . that the man before him was not an aging father but a boy, a boy much like himself, a boy who grew up and had a child of his own and, as best he could, out of a sense of duty and, perhaps, love, adopted a role called Being a Father so that his child could have something mythical and infinitely important: a Protector, who would keep a lid on all the chaotic and catastrophic possibilities of life." 

- Tom Wolfe

[photo: Steve (my dad and protector), b. January 1935 waitin' for breakast with his great-grandson, Riley, b. June 2005]

It’s not often that I hear something new. It must be my age. But a presentation I attended earlier this week, part of the "Friends Across the Ages" speaker series, had such a different spin on it that it really opened my mind. It was on dementia, which is not a favorite subject of mine. It hits too close to home; my father has it as did both of my grandmothers, and I am, honestly, terrified of it. I dragged myself to this meeting because the title held a little promise: “Strengthening Relationships with Those in Your Life Who are Dealing with Memory Loss.” I went out of daughterly duty to my dad, hoping for something to help my family. I came out with a new perspective, and a good deal of hope.

Carolyn Lukert, from the Center for Dementia Education, opened by asking what our reaction might be if a friend or family-member called to tell us they had just been diagnosed with dementia. The responses were variations on a theme: sadness, grief, fear, confusion… She went on to say that many people feel the way I do – that they would rather die than get the diagnosis.  My father said the same thing once. A diagnosis of dementia, for many of us, is not only a death sentence, but a tragedy – a dehumanizing tragedy where the victim will live the rest of his or her life embarrassing others and humiliating him/herself. How else to respond but with sorrow?

Well. Lukert framed it as a diagnosis similar to what cancer was fifty years ago. You got the diagnosis and disappeared, prepared to suffer. It seems unbelievable now, but my own grandmother and grandfather were so embarrassed by her breast cancer symptoms that they wouldn’t speak of it. Now we have pink ribbons and speeches and marathons and all kinds of support. We walk with people with cancer and laud them as “survivors,” however long that survival lasts. We have learned to accompany people with cancer, to appreciate their struggle and to help them continue to live their lives with human dignity and grace.

Is it possible that a change in attitude could transform a dementia diagnosis as well?  It is according to Lukert.  Yes, people with dementia may say and do embarrassing things, and god forbid we should feel awkward, but what if we granted them the same abundant patience and humor we do with young family members? What if we concentrated on spending meaningful time with our loved ones with dementia instead of shunning them because “they don’t know whether we’re there or not.” What if we learned to help them enjoy their lives, making accommodations when they become confused or agitated? How can we educate them, as well as ourselves, to better handle their loss of mental capacity – much like we educate people with cancer to handle their losses? Lukert gives a number of practical suggestions from how to touch them and talk with them to how to accompany them in doing the things that have always given them pleasure – from shopping to going to baseball games. She suggests that by offering to help a dementia patient count change at the grocery store, order at a restaurant, or re-meet an old friend we are doing something similar to what we do to help folks in wheelchairs enjoy life to the fullest. We build ramps.

These are ramps of understanding and good humor and love for people regardless of their mental capacity. She brought up some examples from her own experience of visiting residents in a nursing home where the right kind of touch, tone of voice, and attention could reach a person in the most advanced stages of dementia. It’s our responsibility to learn how to accompany people through this disease, to endure the awkwardness, to help them to enjoy their life as much as possible for as long as possible – out of love and out of respect for their continued humanity.  We all need ramps at times, and often it is these very people who made them for us when we were young or lost or needing help and guidance in our own changing lives. There is so much real life to be lived and shared during difficult times of change; it's a shame to miss out on the good in it out of fear of the awkward. 

At the end of the presentation, Lukert asked us if our minds had changed at all or if we might have a different reaction when that phone rings someday. She suggests this:  “I will be with you, whatever comes. We are in this together.” 

                                       {photo: my sweet father shortly after his diagnosis}

Science says time is not
the line we humans sense
but it bends and folds and perhaps
happens all at once or again
someplace.

Which explains my grandparents
still in their kitchen
on an autumn morn arguing
about oatmeal as a fire
sizzles still in that woodstove 
somewhere.

And my folks waiting for my
return to Colorado
in the big house they bought
for this while they
bump down a dirt road in a sweet jeep
somehow.

And my eldest daughter stirring
in soft fleece, a warm lump
in a crib with yellow sheets,
waking with the sun,
while my first love walks
toward me in a glow of streetlamps,
still.

{photo: great-grandparents, grandmother, and granddaughters on a warm fall day once}

The End of Summer has become a holy season for me. It's not just the waning of summer heat - although I am apt to fall on my knees in gratitude the first night the temperature dips into the sixties. These weeks have become a time-out-of-time to ponder, reassess, and move forward. It starts around my birthday in late August, which I've often thought of it as a last gasp opportunity (after the New Year and Lent) for "resolutions" and the possibility of actually following through with a few of them. It continues through the early weeks of September. In recent years, the anniversary of my son's cancer diagnosis has added to the pondering, and to its complexity.

A bit of wisdom I feel I've gleaned from this is how perspective shifts over time. This year, Ben called me the day before what is known among a lot of cancer survivors as "D-Day" to confirm that it was indeed that next day - a very good sign that the memory is receding a bit. He was planning on celebrating the six year anniversary with a heroic bike ride up a very steep, 2-mile mountain road near his college - six times (he did it!). He said what I have often thought in recent years: "If I had only known during those years how things were going to turn out, it would have been so much easier."

Yes, indeed. That is what perspective is all about. Six years out, things look different than we saw and lived them at the time. From my own perspective as a mother, I was almost entirely focused at that time on protecting my child,  whatever it took. But the fact that I was also responsible to Ben's three siblings - all young adults at the time: a brother beginning his sophomore year in college, a recently graduated sister starting her first week at work, and another sister who had just become a mother - called me out of that laser beam focus occasionally. My own head and heart would be crumbling with despair at his latest complication and his overall prognosis, but I would gather myself together to explain things to my children in the best light possible, with hope and the details that supported that hope. Ben was strong and young, he was getting the best care possible, we were with him day and night. Telling the story to them helped me reframe it for myself. And it was all true, as true as my fear.

Even in regular day-to-day life, I've found this to be a helpful technique in gaining perspective. During stressful times, telling your story from a different angle - in the third person or from a different time frame can truly help one get a grip on the complex reality of it.  "It was a strange year, full of change and confusion ..." or "She sometimes wonders if she can make it to Friday, much less to old age." A bit dramatic, yes, but somehow seeing myself as a character in an un-folding story, or an actor in the middle of a movie, helps me see that more is coming that I don't know yet, and that I have a hand in shaping at least a part of the tale. 

This is the key, I think. To somehow get yourself to wondering what will happen next, instead of dreading what you most fear. Curiosity instead of cringing. One interesting thing about life is that we never know the ending. And as comforting as it might be to have someone whisper to us what happens next, what kind of life would that be? We need possibility in all its limitlessness - we need the capacity to realize hope, even in the darkest times.

Pema Chodron was one of my guides during that hard time and still. "The gloriousness of life and the wretchedness of life need each other. . . We can become quite arrogant whenever everything is going our way." Wretchedness, and even the depression that sometimes follow, is the muck we work with to create something interesting at least, if not always beautiful. We have to find a way to open up to "the whole thing," she says.

I think we must have an innate capacity to do this. The anniversary of the terrorist attacks of September 11 falls during these holy weeks too. This tenth anniversary seemed to me to focus less on politics and more on individual and communal loss, and love for one another. Watching footage from that time and listening to the immediate commentaries, what you heard from the "(wo)man on the street" is not the rhetoric we heard from our leaders justifying retaliation. What we heard was heartbroken grief at the immensity of the loss of human life and wondrous gratitude and love toward the people who reached out to one another that day. You hear deep pride in our resiliency, and in our ability to suffer great loss and open up instead of shut down. A glass of water to a stranger, a held hand, and "are you okay" echoing all over the blasted cities and rippling outward.

Because it is possible to let sorrow and grief and shocking twists of fate soften us, I want to believe in it as a way forward. It is hard to stay there, as we saw post-9/11 and as we witness in other tragedies. There is choice in there someplace - to cringe and harden or to reach out and wonder. From my current vantage point in middle-age, I can tell you that on a personal level it is an ongoing struggle that does not get easier. But it does get interesting, more so with each year. And that is why all anniversaries are worth celebrating, or at least observing - the ones obviously life-giving like a birthday, and the ones that continue to shape a life, which are often hugely difficult at the time. It is so big, so complex, so difficult, and so beautiful. C'est la vie. In late summer, I am reminded to keep my eyes open wide, seeking wonder, giving gratitude.  

I like the idea of calling them “sparkles,” but they are - honestly - a pretty dull gray.  I began to notice the transformation underway on my head a few years ago, when I was in enough personal tumult I couldn’t bear to add one more thing to my list of life-changes. I dyed my fading hair several different colors, badly, before getting some professional help from my sweet, nearly lifelong hairdresser who began blonding-up the new hairs every few months. But it's costly, and after a few years of it I began to wonder what it would be like if I just let it be.    

I remember imagining, as a child, what I might look like when I grew up. Then, there was no sense of dread or loss, just curiosity. I simply "wondered"  - in a que sera, sera kind of way - what would be. If we lived in a culture that appreciated aging, if we acknowledged the growth and the wisdom obtained over the course of a human life, might we be a little more open to this change, or even see some beauty in it? As it is, I have an oppressive feeling that going gray is failing somehow. But at what? Beating back time? Keeping myself up (as opposed to letting myself go)? Who says?  

A lot of us, unfortunately. The hair-dying is just the tip of the iceberg. I have a friend who, at forty, went to a well-respected dermatologist to have a mole looked at and also got a free lecture on all the ways he could improve her face - removing laugh and frown lines, plumping up her lips, "a little here, a little there."   I have a younger friend whose husband gave her a breast-lift and tummy tuck for her birthday following the birth of their second child. God forbid we appear to have actually lived during our lives. This does not happen in the same way to men whose graying temples are considered distinguished and whose wrinkles add a certain amount of panache in the middle years. This worries me too. Is it simply biology? Instinct makes us perceive signs of aging as indicators of security and experience in men, but only of lost reproductive potential in women? This is kind of dreadful.

But I have been gradually going gray in other areas of my life too, and this has been - honestly - wondrous. Things are simply less black-and-white than they were in the brighter days of my youth when I thought I knew so much. The world I inhabit these days is much more nuanced. I have seen, heard, and done a lot I would not have imagined when I was a young woman. As I look at those thirty years of choices - my own and those of others - with some distance, I tend to see the whole thing as a lot more mysterious that I would have thought possible back in the day. I couldn't see then the wonderful outcomes of my worst decisions or some of the difficult times that followed the ones I made most carefully. Real life is even more colorful than I had imagined. Categorizing, labeling, and judging is complex to the point of being futile. 

Looking back from this place in the road, I see a winding path indeed, partly of my own making, partly coincidental, with plenty of unexpected twists and potholes that put an end to some of my careful plans and assumed ideas. Following some of those bumps off the path, I found myself looking for tracks in the mud from those who had gone on ahead of me, for some worthy guides in the fresh territory.

I still seek those tracks. When I look at the women I most admire, they have had the interesting, unexpected lives that those who resist falling into role-playing, or truth-hiding, can have. They had false starts, and backtracks, and a certain amount of floundering. They aren't necessarily "pretty" and neither are their lives. They are "beautiful" instead, with their skinned knees and messy play-clothes, their deep wrinkles, bright, curious eyes - and gray hair.  

What does the world need now? More women desperately trying to quash the consequences of the adventure of living? Or those wearing their real age proudly? I think we need more graying women out there, dancing. More hard-laughing, recklessly ageing grown-ups delighting in the mystery and wonder of it all - as it is. We need women who just don't have the time to keep checking themselves in the mirror or against the latest magazine ads. Srong and resilient, gracious and flexible women, appropriately worn a bit around the edges; women who are gray, silver, and whitening, lightening up. And while I entertain the real possibility of a bright-headed future version of myself down the line, it will not be because she is hiding something, but because she is expressing on her head a true inner brilliance, vibrancy, and  joie de vivre. We deserve some joy after all this living, not shame-filled slinking around. For me, for now, that means going a bit grayer. 

Someday...

[photo: Advanced Style - I love this blog!]

People use drugs, legal and illegal, because their lives are intolerably painful or dull. They hate their work and find no rest in their leisure. They are estranged from their families and their neighbors. It should tell us something that in healthy societies drug use is celebrative, convivial, and occasional, whereas among us it is lonely, shameful, and addictive. We need drugs, apparently, because we have lost each other.  - Wendell Berry, from “Racism and Economy” in The Art of the Commonplace

I watched him through the sheer curtains in the well-lit living room, pacing back and forth, then exploding out the side door of the house into the screened porch where he frantically rifled through seat cushions and overturned storage boxes looking for the car keys his mother had hidden. She had called me and we had called the police. He was jacked up on something and afraid "they," the thug dealers, were out to get him. His bloodied lip and bruised chest indicated that there was something wrong, if not exactly what he was describing. Outside on the driveway, I found myself "praying" for help, something I often find difficult to do: "Please help him. He is so young and afraid. Make him safe. Help him, help him. Please.” I can still see the fat baby and the skinny little boy in him, and  know my friend is seeing the same thing. But when the police come, they encounter the fearful, raging, tattooed and muscular young man and ask the questions they ask all the parents: "Did he threaten you?" "Is he a danger to himself or others?"

All addicts are a danger to themselves and others. They are circling a drain - or maybe the existential abyss - and they are likely to pull the ones who love them down with them. Everyone revolving around the addict is forced to ask the big and immediate question that "danger" drives one to: "What on earth am I doing?" We hope the addict will find his/her way to ask themselves the same question, and soon.

The addict's life is very immediate and "real," lived in the present moment of desperate need and momentary satisfaction. What may have begun as a buzzy distraction from boredom or brief respite from pain, turns into an escape, and then the thing that must be escaped. Each addict, and those who love him or her, has a different story, which is somehow the same at its core - and at its very deepest, the same story we all have: Longing, loneliness, fear, pain, fatigue - the "quiet life of desperation" relieved for a minute by the happy buzz or a numbing out, a break from the relentless burden of being human. 

It takes "tough love" they say; it takes hitting rock bottom, or watching the one you love hit it. There is no easy way out or back up. If the life of an addict is particularly "real," the path out is even more so - looking squarely at what you are doing, what you have done,  where you are heading, and doing something else instead. Every time.

The illegality of street drugs and the edges of illegality of alcohol use (under-age use, drunk driving, alcohol-fueled violence or neglect) adds another level of complication to the whole thing. It is a morass, and no surprise that support groups for people who are trying to help addicts say the same thing: save yourself, put the oxygen mask on yourself first, watch closely how you are "enabling," prepare yourself to let go of any vestige of control you thought you had. 

Oh Lordy, aren't we all addicts and enablers? Again I sidle up to prayer. No one needs a "higher power" more than ... well, all of us. Alcoholics Anonyous (AA) - the best and most real "church" I know - makes it clear that it doesn't matter how you actually conceive the higher power, only that you acknowledge that there's something more than simply you. If nothing else, "we" is a higher power than "I." Me to the second, or the third or to the entire roomful of people feeling the need, making the choice, watching with love, asking what on earth we are doing, or will do today.   

{photo: image from Clean and Sober, Not Dead}

Have a nice day. Have a memorable day.
Have (however unlikely) a life-changing day.
Have a day of soaking rain and lightning.
Have a confused day thinking about fate.

Have a day of wholes.
Have a day of poorly marked,
unrecognizable wholes you
cannot fathom.
Have a ferocious day, a bleak 
unbearable day. Have a 
riotously unproductive day;
a grim jaw-clenched, Clint Eastwood vengeful
law enforcement day.
Have a day of raging, hair-yanking
jealousy and meanness. Have a day
of almost grasping 
how whole you are; a finely tuned,
empty day.

Have a nice day of walking and circling;
a day of stalking and hunting,
of planting strange seeds and wandering in the woods.
Have a day of endearing nonsense,
of hopelessly combing your hair,
a day of yielding, of swallowing
hard, breathing more deeply,
a day of fondness for beetles
and macabre spectacles, or irreverence
about anything you want, of just
sitting and wondering.
Have a day of wondering if it's 
going to help, or if it just doesn't matter;
a day of dark winds
and torrents flowing though the valley,
of diving into cool water
and gasping for breath,
a day of sudden hunger for communion.

Have a day where the crusts you each
were given are lost and you stumble 
with your fellows
searching endlessly together.

- Louis Lipsitz, If This World Falls Apart

The obligation is very great and moves two ways. The old have an obligation to be exemplary, if they can–and since nobody can be completely exemplary, they also have an obligation to be intelligent about their failings. They’re going to be remembered in one way or another, so they have an obligation to see that they’re remembered not as a liability or a great burden, but as a help. And of course the young, the inheritors, have an obligation to remember these people and live up to them–be worthy of them. So it’s an obligation that goes both ways, and it’s inescapable. Once you become involved in this sequence of lives, there is no way to escape the responsibility. You inherit, and in turn you bequeath an inheritance of some kind. 

- Wendell Berry

As you awaken, before you leave your bed,
talk with yourself, say
All you must do this day
is face what comes
squarely
calmly, curiously
with wonder.

    The squabbling children
    A sudden illness
    The lost dog
    Unemployment
    Misplaced keys
    Infidelity
    The dripping faucet
    The possibility of death

Widen your eyes
brush off sleep
scan, focus, notice
nod assent.

    The fledgling mockingbird flapping at the edge of the garden
    Its mother on the post
    The cheerful wandering of portulaca seeking sun
    An anonymous thumbs-up
    Crepe myrtle petals drifted along a sidewalk crack
    A car radio blasting a line of your song
    Your short shadow at noon
    The slanting sun through the blinds at five, dust changing to glitter

Ask then what will sustain you
body
mind
heart
What to swallow
how to move
what to seek
with whom to stand 
to face this day.

Ask your god
the universe,
a neighbor  
or your children
for mercy.

Now arise
awake.

I am heading to Colorado this week, helping move my parents to Texas – a place they lived for many years before they retired. My mother will live in an apartment down the road from the nursing home where my father, suffering from "profound dementia," will spend the rest of his life. This situation is a far cry from the happily retired life they were living only a few years ago – skiing in the winter, hiking in the summer, entertaining friends, visiting grandchildren.  My father seems lost, my mother beside herself.   

His decline has been like the proverbial downhill snowball – starting with tiny, confusing changes in his behavior, gaining speed as he struggled with delusions, and then quickly burying his ability to function independently as he forgot how to pay the bills, to read a book, to tie his shoes. The last Sunday crossword puzzle he attempted rested, partially finished, on the table next to his chair for months after he quit trying.

When he became incontinent and started wandering confused in the hills around their home, my mother felt it was time for him to get round-the-clock care, although we all had mixed feelings about it to the end. It was remembering something my dad had asked of us years ago that finally tipped us over the edge - that we promise to place him in a nursing home if he ever became as lost and dependent as his own mother was at the time. I know my "old dad" would want this.  I want to honor this clear wish of his, even more than I want to indulge my own desire to find a way to keep him home.

Never an "easy-going" man, he was – anyone would say it – a good man, an honest man, a hard-working man. He grew up during insecure times - the Great Depression followed by World War II. His father was overseas during the war years and was a troubled man at home, taking out his own insecurities on his only son. Older relatives marveled at what a responsible and conscientious boy my father had been, traits that stayed with him throughout his life.  As a father, he seemed to see himself primarily as a "provider" and spent long hours at work. It took me way too many years to realize that this was his way of loving us – to work hard to make our lives easier than his had been.

He is still loving us, I believe. As confused as he is, as slow and as helpless, he is kind, compliant, usually quiet – clearly not all there, but seemingly at peace with it now.  He's made this much easier for us than it might have been. While he was dumbfounded when he was told he could no longer drive, he transitioned to the passenger side with a fair amount of grace.  He was patient with us when our reality suddenly diverged so distinctly from his, allowing us to bring in firewood from the shed, but keeping a sharp lookout for the mountain lion he had "seen" raising her cubs in there. Only once did he really break down within earshot, heartbreakingly, to a friend: "Please help me, Larry; I am so lost!"  Mercifully, that realization seems to have passed.

I cannot begin to imagine what it's like to no longer be able to trust your brain to interpret the world accurately for you – to see mountain lions that aren't there, to believe that John Wayne is your new roommate, or that Oliver North is arranging one last B-52 flight over Russia for you and your crew (oh, why could he not have delusions of Gandhi?). How else do we know the world except through what our brain interprets for us?

Yes, he is lost.  But some of his most essential qualities remain - the courage, the stiff upper lip, the love in his voice when he calls me "honey," the protective impulses of the good father. These sweet remnants will go too, we are told, as our father continues to wander away, body and soul. But take everything else, this disease cannot take our love for him. We have known and loved him through most of his "manifestations": young father (he was 23 when I was born!), sometimes absent provider, adventurous retiree. We can only keep loving that good man now, and backward through time to the child that we didn't know but whom he may most resemble at this point. He will not be lost to us.   

[photo: my parents on the road to Silverton, summer 2008]