The privilege of memory loss

Meg Smith, PhD, MPH

Woman sleeping
Photography by Elena Levitskaya, RN

When older folks’ memories begin to drift, they say the past is slipping away. In my case, the past has jettisoned away. It is me who is slipping away. I search for words and come up blank. I think I remember but find it’s just out of reach. Faces I can’t place, places I can’t find, so much I cannot comprehend. I sat hand-in-hand one day gazing at my smiling mother-in-law, who has Alzheimer’s disease, and I wondered which of us remembers more of the other. My money was on her. She remembers in a way, she simply can’t express it. In my case, I am blank of anything to express.

My mind was once worthy and agile, and few could have predicted the events that led to its misfortune: first, that I would become consumed by depression and, second, that I would choose to counter the illness with electroconvulsive therapy, resulting in a pervasive and penetrating loss of memory. I doubt I ever knew what it meant to be truly depressed—not sad or down or blue, but depressed. To feel absolutely hopeless. I avoided communication, rejected work, and severed relationships. Personal hygiene was a thing of the past. I stopped eating, stopped drinking. My only attraction was to sleep. I arrived at that junction where staying alive was less desirable and more disturbing than being dead. I literally had to think of a reason to take my next breath. There is no stretch, no color in these statements. This is the stark power of depression.

This downward spiral of depression would not leave my soul, its precipitating factors mystifying, including everything and nothing all at once. Grudgingly, I got help, a move no one called premature. I was quickly falling away, dehydrated and malnourished, showing no desire for life. Drugs were having little effect, and talk therapy was made difficult by my deafness, the lasting result of a long-ago bicycle crash.

My doctor, a kind and thoughtful man, favored the desperate option of electroconvulsive therapy or ECT, commonly known as shock therapy. Portrayed by Hollywood as excessive, barbaric, and cruel, this image makes a better storyline than the everyday truth of its effectiveness. ECT worked; it worked quite well. I was no longer depressed. But I was left with a crushing loss of memory—a not uncommon side effect of the treatment—with no memory of last month, last year, or the last forty-seven. Amnesia? Please. That’s the fabled stuff of soap operas.

One day I found myself staring at the bevy of products lining my bathroom. What does one do with these things? As if a secret society, their names do not belie their purpose—white tea guardian, checks and balances, blow serum. The last one is for distressed hair, in case you’re wondering. I mean, the rest of me was frankly distressed, I thought, why not my hair?

Each day brought another adventure. Hazarding out alone one day, I found on my return that I had no recollection of which floor to exit the elevator. I sat and waited for the answer to come. It did not. Luckily, my husband did. Or on yet another day, our neighbor explained that the trees surrounding our home, and indeed the entire neighborhood, are not diseased. It turns out that trees lose their leaves each autumn in preparation for the winter ahead. Who knew?

My responses to questions, now slow and clumsy, provide ample time to be asked “cat got your tongue?” Knowing nothing of this cat, I just smile and say, “yes, that’s it.” But these graceless encounters, they leave me humiliated, a feeling, ironically, I seem to remember well.

Fortunately an internally beautiful circle of friends and family surrounds me, admirably filling in gaps, carefully relating the encounters and events of our shared lives. Imagine my guilt, then, as I am lovingly escorted through the corridors of memory only to find myself left flat and empty. The best-intentioned interpretations by friends and family could not reconstruct me. Memory is much too personal. Memories are what we make them to be. They are the emotion and meaning we attach to the events of our lives. And no amount of retelling can return me my emotion, my meaning. The retold stories of my life lay neatly stacked like cordwood in a ransacked mind.

Back when I could hear, I was a lover of music. After all these silent years I could still pull up old harmonies in my head, sing the lyrics, hum the tune, especially Felix Mendelssohn’s Italian Symphony, my favorite. In the years prior to my deafness, its moving rhythm edged me toward the finish line of many a bicycle race. And now, the Italian Symphony is gone from memory, stolen it seems. The double loss of this simple, irreplaceable pleasure leaves me heartbroken.

I was not left to stumble about aimlessly searching for memory. Not at all. There is an ordered progression of mending called rehabilitation, kind of like a salvage operation, where one is put back together. No matter the reasons why you might have fallen apart—shock therapy, head injury, brain cancer—we are now one. Our days were permeated by the pallor of dependency and decline. But I could not argue I did not belong—my safety and well-being understandably in question. My wealth of accumulated knowledge had been reduced to mere pocket change.

What I craved more than anything, though, was the bold freedom of driving a car. Driving is the one true path to independence—ask any teenager. Now that I was recovering from the effects of ECT, though, the doctor and the treatment team—newly assigned to patch me back together— stood together in their restriction of all things independent. “You cannot drive a car.” These words, when intoned by the therapists, seemed to have a meditative quality about them, spoken soft, sweet, melodic. Their fine eloquence was just deflection; the meaning underneath was still the same. “You cannot drive a car.”

The rehab center’s driver was just as much a part of the treatment team as the licensed therapists, and it was this gem of a driver, shuttling me to and from rehab everyday, who saw things differently, bless his heart. Having the close-up view of my defeat, this wonderful man took it upon himself to set a different course. He drilled the rules of the road into my head, challenged me with memorizing our routes, and turned the wheel over to me. No excuses, no tears on his time. “Get out” he growled one day a few miles from home. “You’re ready, drive it or walk it, your choice.” Somehow he managed to bark this command while at the same time conveying the tender concern of a father so very protective. Amazing man. “Don’t tell anybody we did this.” Like I would?

I then found myself in the care of an extraordinary therapist, the kind of person who quietly enters your life at the precise moment of need—sent from above, I’m convinced. A glorious example of simple human kindness. The ECT was useful, but finally I had found a fellow human being who believed in my recovery. First there was the day she told me who I was. Calmly, she wrote out my birth date and a number called social security, “Numbers not to be given just anyone,” she counseled cautiously. And then she went on to share the defining stories of my life. From friends and colleagues, she had collected narratives and notes of our shared experiences and how much I meant to them. They lay bound in a memory book. This small understated woman was the embodiment of hope for me. Where I had none, she had hope enough for both of us, unknowingly maybe, but that’s the way these things work.

Yet challenges abounded at every turn. At the health club casual conversation turned toward the events of September 11th. “What happened on September 11th?” I recklessly asked my newfound acquaintances. No explanation came forth, just the disquieting expressions of  “How could you?” The resultant glares could have peeled paint off a battleship. It was left to this same extraordinary therapist to proffer the gentler, more forgiving explanation. There are angels among us, and they come in many forms.

If only there were an angel who could carry my sweet memory in her celestial arms and gently place it back where it belongs.

The holes in my memory are complex. It was a perfect summer day when I lay outside watching the clouds, wondering if ever in my lifetime I had taken a moment to acknowledge their absolute beauty. Before long the word “cumulus” comes to mind in an obscure sort of way. Much later I am jolted with the recollection of nimbus, cirrus, and thunderhead clouds. Thirteen hours to unearth an elementary knowledge of clouds, it took only an additional minute to remember the spring of 1973, sitting on a blue and yellow blanket in Chicago’s Marquette Park, gazing at the clouds with a high school sweetheart. We were talking about our college dreams. I can still see his face. That’s my recovery, sometimes limping along, other times soaring, always unpredictable.

I want only to slumber comfortably in the arms of whole memory once again. And yet I am brought up short every time another miraculous memory returns unexpectedly to the fold. As if  someone had climbed up to the roof and rudely attached the TV antenna, these impatient memories—be they clouds, high school sweethearts, or inferential statistics—they are not neat, they are not linear, and they make my head spin with the complex chemistry of it all. It’s a compound of wonder, joy, and anticipation as every memory, no matter how inconsequential, is welcomed back home.

They say the heart is stretched, enlarged through challenge. Well then, we can expect my husband’s to burst out of his chest any time now. Ours was a shared pain, and it was just that, ours not mine. He does not complain. Luckily he is a long-distance runner, sustaining his balance by logging mile after sanative mile. It must have crossed his mind, you might think, but he never did run away. Instead he gave up his first-ever Boston Marathon to care for me. Ever patient, this husband never tired of answering the same question as many times as it was asked and forgotten. “How did we meet? What attracted me to you, you to me? Tell me about us.” And then he asked me to marry him all over again. I said yes. So much life we must have shared and so much we must have lost. There is an unspoken sadness between us, but it begins to fade as a new history builds.

I think about all the reunions, the rejoining with streams of people who had once filled my life. Sometimes awkward, sometimes distressing, but so many times the attachment was at once. I remembered nothing of our intertwined lives, yet there was an immediate comfort, an undefined bond, a strong and unerring pull well within my heart. I knew we belonged together. I have no explanation, but I do have endless appreciation for this gift of the heart. It was a solace of immeasurable proportion and a treasure few can ever hope to hold.

To be perfectly honest, the tears I have shed throughout this misadventure are just as likely to have come from laughter as despair. I love to laugh, and there’s been no loss of people willing to oblige me in that way. My husband. Maybe it was his faultless impressions of Moe, Larry, and Curly. Maybe it was his roguish schemes to take advantage of my disadvantage. Whatever it was, he brought me an always amusing sense of calm. Trusted girlfriends. They are useful in helping to replant lost memories. That is until they find the more unrestrained fun of planting false memories. Then these girlfriends are not so much useful as vastly entertaining.

My circle of possessions erodes daily as goods and tangibles are left in my forgetful wake. So my things have eroded, what of it? Who among us can say they have witnessed the radiant beauty of autumn for the first time at age forty-seven? Who has touched the wonder of falling in love with your spouse a second time? How many of us have the chance to grab life back and swing it by the tail? It is the lucky few who know the genuinely unending appreciation that comes with reclaiming a piece of yourself you thought forever lost. If not for my fallen memory, could I ever have known?

I am not sorry for agreeing to ECT. The gifts it bestowed and the havoc it so thoughtlessly wreaked are pretty much even in impact. Undeniably I have lost a part of myself. But then I’ve gained a thing or two. The penetrating gap between what I know and what I once knew persists. The gap of greater import though, just might be the one between all I know now but never knew before. If you nod in knowing appreciation when I tell you I fall asleep asking myself how I ever got to be so lucky, then the story speaks for itself, as it should.

 


MEG SMITH, PhD, MPH, a healthcare analyst and professor, wishes to remain anonymous.

About the photographer

ELENA LEVITSKAYA, RN has been a Critical Care/PACU RN for the last 15 years. Photography has been one of her creative outlet for over 10 years. She mainly explores nature as an ever present and alive subject in connection with human perception and emotional responses to natural balance and harmony.