COMFORT

At two and a half, without completely understanding it, I was already heavily identified with the body. Of course I didn’t really know what that might mean. I, Rosalie, was a little person. There were other bodies in my family: my mother, my father, an older sister and a baby sister a bit younger.

I really only have two significant memories or memory shards below the age of five. One was of myself playing in a little sand pile outside our backyard, with toy cars and trucks on an imaginary town or ranch I created. I loved to invent the storyline of me driving around on roads in a truck. Oh, the freedom of it. I’m not even sure where I got the idea of a ranch, maybe from a little story book? or maybe having an imprint from going with mother past farms? Regardless of where it came from, it existed and for some inexplicable reason, it brought structure, organization and inventiveness to my world.

And the sun. I was always aware of light—bright, bold, effervescent light!

Why this memory sticks in my mind at all is mysterious, other than to say the 𝐌𝐞𝐦𝐨𝐫𝐲 also included a sense of something else that existed: nameless, peaceful, reassuring, warm. It was more reassuring and peaceful even than my mother although I had a strong impression she contained a solid measure of those qualities. 

But this is from the rearview mirror. Regardless, naming it at the time was not relevant. All I knew was that I felt the scene’s quiet power. It was carried by the sun’s light and heat, existing in the space both within my being and outside of it, separated only by a thin but potent membrane. I was aware of this otherness through not only light and sunshine but also nature, other physical elements of the world. 

Light seemed to be a primary delivery, however, communicating in a wordless language. And as much as I knew anything, it was my first crude memory of a sense of being cared for, by protection that was massive even beyond my mother but included her too. I’d be tempted to call it love with a capital L, maybe Divine, but I knew of no such construct then.

CONFUSION

The other significant memory occurred at around two and a half. I had a lump on the side of my right eye, near the temple. I think my mother had been fretting about it for quite some time. As it happens, she took me to an eye doctor and it was confirmed to be a cyst, a reasonably benign protrusion, harmless in and of itself. While I didn’t understand that at the time, I had a sense of no real danger. If anything, I had an awareness it was of more concern to my mother, which stands in stark contrast to her otherwise unflappable demeanor. 

I was told this particular cyst was problematic because of its location. Internally, it was pressing on my optic nerve and had the potential to compromise vision in that eye. Okay. But events overtook any crude understanding I had of the situation. One morning my mother led me by the hand, purposefully, walking across a large lobby. Bizarrely, I remember her walking quickly. This is bizarre in that it was out of character for my mother to do anything quickly. It simply was not her style—for walking, working, or anything else. Normally her gait was slow, methodical, determined, anything but quick. I’m assuming she had some sense of urgency about this little trip to the doctor’s office. This perception was new information for me.

The next part of the memory is hazy. I remember being in a little room, my mother speaking with the doctor, and him talking to her, then me. But I didn’t understand what either of them were telling me, not really. The best I can cobble together is of her saying I was to have a little procedure. She may have used the word procedure, surgery, etc. I cannot say. What I best remember was that I had to come back to have the cyst taken out.

IT’S NOT NICE TO TRAUMATIZE SMALL CHILDREN

Whether the procedure was the next day or a week later I do not know. Regardless, at some point I found myself again being led by the hand across a lobby and into a small room. Mother tried to explain that I had to stay overnight in the hospital, though I don’t really recall. What I do recall is a gauzy image of her trying to comfort me, that “everything will be fine” once the cyst was gone. She also swears she had explained more about what was to happen, that my eyes would be patched after the surgery but it would be temporary. Did I know what Temporary was?

All description about this cyst and the resultant eye surgery has likely been reinforced over the years while my mother was alive and throughout my childhood when I would bring it up. Even in my young adult years, I would question her about the event, all in an effort to understand why this was so upsetting to me even years later. 

The only reason I questioned her was because I had a lingering fright and even greater confusion as to the event’s meaning, along with the actual events themselves. Memory is a funny thing, the perception of a very small child in particular. It gets filtered through limited language and even less comprehension, as to its meaning. Perception by definition is distorted and memory further distorts what was initially perceived.

THE TURNING

There are two aspects, scenes really, mother could never explain, memories that she was not physically present for. After leaving me in the hands of a nurse the day of the procedure, the nurse put a little nightgown on me. Then she took me to a large room that was very, very cold. There was a lot of light in that room but I swear, even the light was cold. This was NOT like the light experienced in the sand pile. It was its opposite! The nurse helped me onto a very cold table while trying to explain what was to happen.

I recall a man—the doctor?—coming over to the table and saying a word or two. None of what he said do I recall. Rather, the scene is fixed like a cartoon character’s “wha-wha” description from Charles Schultz’s Snoopy before he leaves, goes over to the other side of the room to what I think must have been a sink. The nurse at my side whispers something to me and all goes black.

BLINDSIDED

The next thing I remember is waking up in a bed and screaming. Desperately. Both of my eyes were covered, thick patches obliterating sight, even light! I continued screaming even after a nurse came in and tried to shush me. I thought the doctor had removed my eyes! How would I navigate the world? I was terrified and would not be consoled. 

Evidently, the nurse tried to explain my eyes were there, they were just covered to protect them after the operation. Regardless, I had no faith in what she said because all I knew was that I could not see, believing instead there were no eyes to see from. Distorted as it may have been, my fast conclusion was to rely on myself and not anything she was telling me.

The hospital must have called my mother because I was told later that I kept screaming until she came, that no one else could calm me. How mother convinced me my eyes were still there I couldn’t tell you. I don’t remember her words but I do remember her energy. My mother was never a very affectionate woman but she was calm, reliable, steadfast, to be counted on. I knew that even then as sure as I knew there was a sun and a moon. But there was a change, palpable and real, in how I perceived her and more importantly, myself. A kind of doubt crept in. It was about the world and me in it. 

WHAT YOU THINK YOU SEE IS NOT WHAT’S THERE

At some point I go home. The patches have been removed. I can see again but there is a difference in what it is I think I see. While everything looks the same, my perception has changed, my understanding of what I can count on is off kilter. I am told I have to go back in a week or two to have stitches removed which seems like such a small thing at this point. 

I suppose one could draw all kinds of conclusions from this traumatic event for a very small child. Without entirely realizing it, however, perceptions occurred in my little brain as a consequence of all that had come before. The first was that my mother was cemented in my mind, and I suppose my heart, in her reliability, her constancy. After the surgery, however, the gravitational pull of her felt weakened and, in a turn, the gravity of her love and protection changed, modified somehow. My impression now included some inexplicable need to look to my small self for verification of the world and all things in it.

The second was that I firmly believed—without knowing I believed —the brightness of the sun had dimmed, was remote in a way that turned me into a separate “me” and less connected to that brightness as if I had been cast off from it. A sense of separateness and on my own had replaced the previous feeling of connectedness. No notion of a greater Other existed as comprehensively as the impression I previously held from the sand pile days, and of mother! It was a kind of grief I didn’t understand. Though not completely gone, it would be some years before I felt that powerful presence, and 50-plus years before I recontextualized my life.

You have pulled me back to you for some yet unknown reason and on this last day by your bedside, I’m getting ready to cycle back on my own elliptical trip to motherhood away from you. I cannot say, dear mommy, that I feel more sadness—at least not at this moment. In fact, in many ways, I feel far less. I don’t know exactly why. It may be because I keep my feelings at bay—a necessary adaptation to being in your presence. It may be because I have felt so many emotions, often in extreme or potent fashion, that there’s just less sad left to feel.

Or it may be because I accept the whole process of your dying—your timeline, your needs—surrendering in a far better way to the inevitable lack of control that I have rebelled against for so many months. I suppose, too, somehow my crying, my wailing and wallowing in my own muck and mire just seems less appropriate and out of place in the face of your ongoing dignity with which you approach your own death.

Death’s Dignity

Remarkably, it seems mystifying to me that you could be expressing dignity in the face of cancer and Alzheimer’s, with dirty wet diapers and bibs, your straight, white hair flying wildly behind you on the pillow as you continue to hold on fiercely to two teddy bears from your youngest and eldest daughters.

Yet somehow you preserve yourself with just that: a serene quality that comes from somewhere else—a not of this earth kind of thing. You release love and life entirely, attaching only temporary meaning to the props and decorations that identify you now as my mother. Actually, it almost seems as if you are trying to say to me through these scenes, “do not weep so…this ultimately is a much smaller thing than you think, dear daughter, the seemingly unattractive way I die.”

It’s as if you radiate questions like “what sort of compassion would you have exercised for someone not so personally attached to you had you not seen me drool, heard me jabber nonsense, seen me lie in my own waste.”

Loved Into Death

From where I sit it feels as if you offer yourself up yet one more time, sharing infinite lessons of love and light to all around you. At least that’s what I see when I get outside of just the ‘you’ I know was my mother. For I watch the delicate yet sturdy expressions of love and compassion as your nurses tenderly touch your face while giving you your medicine, stroking the sides of your throat, urging you to swallow your morphine to reduce your physical pain.

I watch your caretakers feed you cereal, adjust your head on the pillow, turn your body to prevent bedsores, all the while talking words of affection, encouragement, and humor. You are not their mother, yet you are comforted just the same through kindnesses springing from an impersonal source, being loved into death like I imagine you were once loved into life.

The Still, Small Voice

And ultimately I am struck not by the sadness of watching your earth life leak out of your very specific body I identify as my mother. Rather, I am struck by all the expressions of a still, small voice behind each act of caring extended, as each person responds to the soul dignity you miraculously emit like radar, invisible in its source yet manifested so visibly in each literal caress.

I am honored by the energy of it all driving each act I only later come to name as love. Ironically, I care less and less about the specific vehicle of what seems like a terminal condition—the Alzheimer’s and cancer eating away at your thin, frail body, with my previous interpretations of despair and tragedy all but gone, at least for the moment.

For in the end I gradually catch the faint but increasing whiff of your gift—that you keep your human heart beating for not just me, but for all your daughters as well, trying to communicate for as long as you can make it so, how much you really loved us. And while the details of our lives together continue to silently fall away, what remains of your final yet everlasting act of love—to crawl up onto your own personal cross, arms outstretched towards infinity as if to say “I love you this much”…

Redemption

… And months later, with tears streaming down my cheeks you have moved on, resurrected to another place of grace, with the Giver of the gift who moves us all to acts beyond our human capacity. And I am breathless and stalled momentarily in my human loss of your steady face, eyes that once beamed, missing your example and your effort.

Yet I continue on even though I’m at a different stage of pain, one which sometimes sends me reeling. I somehow manage because of what was given to me—that final act of love that you so graciously expressed. I manage because I know that you have been redeemed in parallel fashion much is you redeemed me. Without any doubt your effort to send one final message through the dignity and effort of your dying process thunders a love so loud it is unmistakable—a love given through great suffering only to sore and transform.

And I am grateful beyond words.

 

Never in a million years did I think it would be this difficult just to get a colostomy after struggling with 14 year tumor excision history. For some crazy reason I was under the delusion that I’d be up and around moving relatively easily a couple of months after the initial surgery. Ha! I couldn’t have been more wrong. No one knows if they will have surgical complications. I was in that category of 100% believing it would be a trajectory of healing that had nowhere to go but up, forward, continually gaining strength, and improving. I suppose I was naïveté on steroids, confessing to being an optimist besides.

Years ago a former therapist told me only optimists get hurt. At the time I thought that sounded sort of odd. Asking her to explain, she laid out the following: pessimists expect the worst and are therefore rarely disappointed when something goes awry; Realists accommodate to whatever outcomes occur, using the intellect to manage any disappointments that come their way. But optimists, rarely fearing negatives, possess an expectation all will be well. The ship leaves port to arrive at the desired destination assuming all will be well. The hitch? The slide into disappointment when things do go wrong can be disorienting, sometimes debilitating, throwing the ship way off course, adding insult to the original injury, becoming unmoored.

Success Not Success

I could tell you the first surgery to remove the tumor and subsequent body parts that hosted it was highly successful. It is the truth. My insult occurred when three weeks later I had to have a second surgery to remove an unanticipated kink in my colon. Shocked, pissed, depressed and, well, pissed some more by the entire set back—which was substantial—my recovery has been slowed, sometimes feeling glacial. This event was peppered with other lesser setbacks such as UTI’s, lumbar compression fractures exasperated by required bed rest, wound healing that has been slow, etc, etc, etc!

In hindsight some of these setbacks feel more like nuisances at this point though not always. Rather, it is the aggregate of complications and slowdowns, the cumulative totality that has been the most difficult to adjust to, adding fuel to the disappointment fire. My intellect informs me, and rightfully so, this could be worse. It also reminds me of people who truly DO have medical situations far more dire and problematic than mine. After all, I am tumor free for they have removed the body parts that were its host. There is no “there” there! To say I remain incredibly grateful is the understatement of the century.

Unmoored

Yet still I grieve. Still I am pissed, at least at times although it does seem to be waning a bit. Feelings of loss are not just for missing body parts. Rather, they reflect an energy system that shrinks away from a physical life I once took for granted. They are for a psychological and emotional operating system of navigating the world and my place in it, as if a supernova is in the process of burning itself out in my small personal firmament.Turning that two ton ship around from optimism to realism necessarily has to be done by degrees much like a ship’s navigation.

This way of looking at my world involves patience, honest and authentic acceptance, and faith! The faith in not only things will be well, but that they already ARE! That the process of degree by degree learning to think and feel differently is beneficial and may even lead to a kind of salvation regardless of the slow-motion, occasionally agonizing discomfort that I feel going through it. The trilogy of qualities listed above have always been challenging for me, especially patience. I’d like it all healed NOW, body, mind and spirit!

Turning in Slow Motion

Having no other real choice, I trudge on in fits and starts with a new emotional, psychological, intellectual and spiritual mechanism that requires patience, forgiveness, compassion and understanding. Ain’t no other way. I guess that demonstrates at least a modicum of acceptance. I definitely feel the benefits of these qualities as they slowly come into focus, albeit it ever so slowly—degree by degree. Oh how I wish I could be on the other side of it. Of course that is not how evolution of any kind operates, at least not until a momentum has built to a critical mass creating a new order.

I know I am blessed. I even imagine, truly, in the end I will view this entire surgery, setbacks and all, as an unexpected gift, besides the obvious life saving measure that it is. In an odd way I’m beginning to see it has merely been a delivery system for a change that has been required of me all along: a blessing in disguise as a medical event. To know thyself one often needs to be tested, a catalyst of sorts, to hit bottom as it were. I may have unknowingly generated such a catalyst.

A New Radar

Some years ago after Michael J Fox had his Parkinson’s diagnosis, I was struck by what for me was a profound statement he had made. It went something like this: I could never sit still until I could not sit still. The habit deeply ingrained in an interior way of how we think and feel, how we approach our world, often requires something cataclysmic to get our attention. I see the value in having such an event, even as I have resisted and cursed it at times. “Lucky is the man who has lost his leg to find out what he is truly made of—not grizzle and bone. Rather, of a sturdy faith in the unseen ineffable Self.”

I am such a (wo)man!

It’s come down to this. There is a body part that needs removing due to a large, hideously unattractive tumor that has just, well, gotta go! Years ago (more than a decade, less than a century) it made its presence known similar to now. With a couple surgeries and double-digit colonoscopies to remove said growth and/or tiny polyps over the years, it has come back, the little bugger!! Excuse me: the big bugger!! Read more