Awakenings

For myself, there is nothing quite like a beautiful late fall/early winter day; the kind of day, while certainly cold, that somehow manages to also feel warm. On such a day in New York City, I enjoy spending time in Central Park “people watching” at the boat pond near the statue of Bethesda – the winged angel which stands as a memorial to the naval dead of the Civil War.

Unfortunately for me and a hundred or so medical students and residents, I was scheduled to lecture at the NYU School of Medicine effectively ruining one such December afternoon covering the lively subject of hypothermic circulatory arrest. We somehow managed to muddle our way through the hour of collective boredom, everyone thankful for the applause which came as I concluded my remarks; I knew this wasn’t commendation for a great lecture but, rather, acknowledgement of the freedom to go make the most of what was left of a beautiful Saturday afternoon.

As I headed for my own quick exit, I was stopped by a faculty member who asked if I might be interested in attending a private presentation by Dr. Oliver Sacks; he was going to discuss and also show his documentary, “Awakenings,” filmed in 1973 and inspired by his book of the same title. Gladly accepting the invitation, I was then informed the film has curiously never been aired on American television. (It still hasn’t.)

The documentary centered on the years after WWI when a “sleeping sickness,” known as encephalitis lethargica, made its ways across several continents. The predominant symptom was a comatose state that had the potential to last for months or even years. Of the millions who contracted the sickness, most died in the early stages; the others often went on to suffer some of the same disabling conditions of Parkinson’s patients: greatly impaired mobility, rigid twisted limbs, and drastically altered relationships with time.

Of the many thousands who did not die, most had contracted encephalitis early in their lives. Of these, the majority went on to be warehoused in chronic care facilities for decades.

They were considered the “living dead.”

The nurses who attended to their every need in these facilities, however, eventually began to insist there were vital, rich, intelligent personalities trapped within these “frozen statues.”

Enter, Dr Sacks. He came to the United States from Britain to pursue neurological research but was ultimately discharged from his lab due to a general “lack of discipline;” he was then advised to, “Go work with patients; they’re less important!”

After arriving in the late 60’s at a hospital in the Bronx, he became acquainted with and was also struck by the post-encephalopathy patients. He, likewise, later came to appreciate the concerns raised by the nurses, after personally sensing vital “forces at work” within these patients. With no small amount of effort, ridicule, and red-tape, he eventually managed to gather these patients into a single community within the hospital and then administered, L-Dopa, the “wonder drug” that had proved effective in the treatment of Parkinson’s. His subsequent successes and failures inspired his book, documentary, and eventually a Hollywood movie.

After his presentation, I recall wandering somewhat aimlessly around Washington Square near the campus trying to grasp everything I had seen and heard. I remember distinct feelings of wonder and awe intermingled with confusion and bewilderment. Clearly, his work with these patients had no direct bearing on me or my own work but the presentation had certainly left an impression. When I thought of the images of these patients and their personal struggles, my mind moved as if by a compass toward a personal magnetic North,

Mother.

I have recently been reflecting on that fortuitous day in December a couple years ago. How was it I managed to happen into an invitation to hear this gentle man speak? How fortunate was I to be accorded an opportunity to view this seldom seen documentary -- to be witness, after the fact, to the actual faces of those patients who comprised the miracle of the “awakening” which emanated from his vision and administration of the drug?

On a most superficial of levels, there are certainly days I wish we enjoyed the luxury of some potion, elixir or even a scriptable drug that could simply make Mother’s days better. Each of us wishes there was a sure-fire way to consistently allow us to resurrect her fully into her own life, and her into ours.

Despite there being no such tonic, we do sometimes enjoy a brief respite from the depressing silence and deepening sleep which encompass most of her days.

It was on another Saturday morning not so long ago. I was walking down one of the many hallways that lead to her room when I was stopped by a family member who assured me, “it was a day for sleep.” The news didn’t necessarily affect me one way or the other as this now seemed "normal."

As I walked into her room a moment later, however, I was immediately taken aback by what I saw.

Mother was in bed but certainly not asleep. After turning her head at the sound of the door opening, her eyes shined bright ~ lit with the spark of certain recognition. She then proceeded to smile beatifically, saying,

“Hi, Bobby! How are you, sweetie?”

Words fail me when asked to articulate my feelings as she uttered those words. There is no good way to describe a moment such as this.

She was beautiful that morning; everything from her hair, makeup, clothing, and skin color was perfection. And what of her voice? Speaking with the same strong, familiar voice I remembered from my childhood, and with a clarity I had not heard in many a year, she went on to answer,

“Yes, I would love an omelet – but only if it is as good as it was yesterday!”

My immediate instict was to start making phone calls; I wanted everyone to have the opportunity to share time with “Mom” as well.

After what seemed like a reasoned conversation between Mother and my oldest brother, she went on to end the call with an invitation to, “come visit whenever you can,” and with reassurances of her constant love.

Mother handed the phone to me when she was through; I then walked out into the hall and heard my brother exclaim,

“What in the hell has happened?!!”

Speaking to him later of this conversation, he went on to thank us profusely for calling him so that he could share in her own “awakening,” of sorts; he hadn’t had such a conversation with Mother in years. He further confided that the short-lived moments with “Mom” eventually reduced him to tears.

It has been said the story of Dr. Sack’s, the administration of L-Dopa, and the awakening of his patients is fantastical; a tale of the magical elixir that bestowed new life and, just as suddenly, took it away. Long before Dr. Sack’s, however, stories such as this had been the basis for countless legends of mythology, fairy tales, and science fiction.

To me, his story is simply profound.

I don’t believe we are destined to know what it is that allows us to occasionally experience a genuine visit with the Mother we have always known and loved. Through these brief interludes with Mother, I believe I come close to better understanding the wonder, joy and awe which surrounded the return of Dr. Sack’s patients from the “dead.”

Our story with Mother is no less a cautionary tale. Time has a way of taunting us with glimpses into that which was, all the while forcing us to again retreat ~ to accept that which is, as well as inculcating fear about that which has yet to come.

I refuse to buy into the fear, however. While Mom’s disease remains incredibly difficult on so many levels, we have learned there are truly extraordinary “gifts” that have come to us as a family along the way.

A Saturday morning spent visiting with Mother is one such gift.

For the rest of the time, we are left to surround ourselves with pictures and memories of Mother as we would all like to remember her.

And, while each of us may have to eventually remind Mother every time we see her that we are her children, we will, in the meantime, try very hard to concentrate on the fact that we do still have Mom.

She Sleeps

I recently watched the older, better version of the film, "Yours Mine and Ours," starring Lucille Ball and Henry Fonda as widow(er)s who met, fell in love ~ only later discovering they shared 18 children between them.

In this movie, as often occurs in real life, love trumped reason with the two eventually marrying, thus creating a setup for untold mayhem as they melded their menageries.

After settling their 18 tax-deductions into bed, the two naively prepared to enjoy the first night together as husband and wife. The anticipation was short-lived, however, when three or four of the youngest burst through the bedroom door announcing their intention to sleep with the newlyweds out of fear of new surroundings as well as a raging storm. Life would never be the same.

The next morning I awoke at 3:50 AM. I hadn't received a page ~ I wasn't even on call. Wide-eyed, I lay in bed staring at the ceiling thinking about the crazy movie as well as lamenting another lost opportunity to "catch up" on my sleep. Suddenly an odd, random thought crossed my mind:

Until the past year or so, I had never seen Mother sleep.

Why the thought captured my imagination I will never know but it struck me in such a way that any return to sleep lost out to a chair and computer keyboard.

I would assume many would argue my family was a bit provincial. While we were certainly allowed in their bedroom during the day, I can think of no circumstance which would have warranted an intrusion into the sanctity of the room at night. I can add with absolute certainty ~ storm or no storm ~ none of us ever sought sanctuary in the safety of their bed; it simply never happened.

For myself, I find this business of jumping onto the beds of family and friends to be perfectly natural; I always feel a bit closer to others after these early morning, rumpled hair, blurry-eyed conversations ~ as if I have taken yet another step toward premium membership to a club. But for all the enjoyment of discussing politics or planning the day, I will admit to a sub-rosa "pull" that would have me get up and leave the room. Somewhere in the dark recesses of my dusty brain, the distant admonishment not to disturb the sanctity of a bedroom survives.

Following what I had always presumed was the natural order in everyone's life, Mother was up and dressed well before any of her children. Once we were all eventually enrolled in school, there was the daily process of making sure each was appropriately attired (siblings claim I once somehow managed to wear pajamas to school) followed by a hearty breakfast ~ that "most important meal of the day." After finishing, each of us was bustled out the door, packed lunch in hand, to then make our way to school ~ times being different, everyone walked.

If Mother then took a much needed nap, I never knew it.

Mother operated in high gear; when her health allowed, she was never deterred by any person or for any reason. She was the living embodiment of the proverbial Energizer Bunny.

When she wasn't shopping for groceries, making dinner, baking desserts, or cleaning she somehow managed to find time to garden, sew, knit, take the occasional art class, play bridge, or raise a never-ending lineage of stray dogs, cats ~ even fowl.

It was only after our stepfather retired from corporate life that we began to see the two of them slow down a bit; the first small step was in the form of short naps taken in the afternoons. I can personally sleep anywhere and at any time ~ medical school and residency has a way of conferring this ability. For the life of me, however, I never saw Mom take a nap on a chair or her favorite couch; she reserved sleep for the privacy of her bedroom.

Specialists have long assumed people need more sleep as they age; this is what I assume my grandfather referred to when lamenting that "youth is wasted on the young." The notion that sleep starts to deteriorate in middle age and steadily erodes with advancing age seemed so obvious that few challenged the prevailing wisdom.

Researchers now feel, however, that sleep patterns do NOT change much from the age of 60 or so; the studies seem to indicate poor sleep is not due to aging but, rather, results from illnesses and the medications used to treat them.

There also seems to be a recognized process whereby poor sleep feeds back to cause a further reduction of health. At least as regards pain, a common factor in disrupted sleep, a restless night can potentiate pain the next day which can further make sleep more problematic.

In Mother's case, she experiences what can only be labeled "fragmented sleep." Her interrupted pattern of sleep has led to impairment of her pain pathways. She feels pain more easily, is less able to inhibit pain, and develops more frequent neck and backaches. The vicious cycle ensues.

Fifteen months ago, while clearly suffering the ravages of Parkinson's disease, Mom walked through the front doors at GVM on her own two feet. Over the next couple of months, she did everything ~ including breaking through a security door ~ to "get the hell out of that place" ~ to go home. The nursing home could not initially deter our Energizer Bunny.

Effectively bedridden since the beginning of this year, however, she is no longer capable of pursuing an exit strategy or anything else that once mattered; instead, she spends more and more time sleeping her days away.

It has admittedly been unsettling seeing Mother spend so much of her time in sleep. Strangely, it has never seemed as if I have intruded on her privacy as I watch her sleep ~ so much about life in a nursing home requires everyone to forfeit most of what exemplifies a "normal" existence. Over time I have even come to somehow enjoy listening to the quiet cadence of her breathing ~ there is some small comfort in this.

But there is also the natural inclination to spend time lamenting the woman that was; the energetic Mother who could make everyone around her seem slothful as she moved through her days. This is clearly not the life she envisioned for herself ~ a fact which saddens all of us. I have a sense that if Mother were fully aware of her circumstances she would have a lot to say about how she is spending these days. As for the rest of us, we have learned to accept the simple benefit of sharing time together; asleep or not, being with Mother is a gift.

When asking my oldest brother to confirm or dispel my notions about Mom and sleep, he went even further adding he "wasn't altogether certain she ever slept."

He then relayed a forgotten memory from a distant Christmas Eve years ago when Mom "slept" on the floor of our room ~ apparently out of fear we boys would ruin our morning surprise. All night, as we tossed and turned from excitement, Mom was repeatedly heard murmuring the admonishment to, "lie still."

Whether she actually slept that night we will never know.

Rest assured, she was there when we awoke.