I swear, I don’t know which is worse: to lose vital functioning body parts or to lose one’s memory and therefore mind. I’d say they both pretty much suck! And if that sounds indelicate, too bad. You’ll just have to get over your proper, persnickety selves. Yes, I’m in a kind of a funk today, and all too often, too many days. I can be an Eeyore like the best of them. Just keeping it real.
Sometimes it’s hard to keep a sense of humor or to have a whole lotta Grace in the face of either intermittent, ongoing pain, or the inability to do simple functions I used to be able to do like go for a walk without the aid of hiking poles or a walker. I have come a long way and can even walk short distances on my own, but I cannot sustain it throughout the day without pain.
And I must say, it really frustrates me to hear someone complain about what seems to be, in relative terms, a little ache, a little pain, the equivalent of a hangnail or a papercut. Now, I know that when I am in this kind of a mood I not only do not want to stay in it long, even though I indulge myself. Just as importantly, I can guarantee I will end up laughing at myself. It never lasts (although I sure seem to circle back to it.)
But sometimes I get stuck. It is hard to have the body continually deteriorate bit by bit, body part by body part—this otherwise exquisite, yet prone to break down communication device. Quite frankly, I’m too friggin young for this! Besides the tumor that was removed a year ago, along with 2 1/2 GI portions, I also have had a series of vertebrae’s fracture and collapse. (Yes, yes, I know I’ve complained about this before.)
I really have made tremendous progress since, but it seems the deterioration and decay is not done.
Eye to Eye
Recently I was diagnosed with Macular Degeneration, the leading cause of blindness in old people. But I’m not old! Am I? This really should be someone else’s problem, a much older person, not a 67-year-old’s. This latest diagnosis has been particularly sobering. How will I write?? Of course there’s a way. Braille. How will I drive? The flat out fact of that is, I won’t. While I haven’t been driving since my surgeries a year ago, I was viewing that as only a temporary condition. That could change.
And then of course—horror of horrors—how will I change my colostomy bag? Do they have bags in braille? Can I have little dots put on my belly right around the stoma so I can guide the bag opening exactly where it needs to be? This is important stuff for me. It’s certainly more important than teeth although they are going too. (Resorption!)
Eruption and Turning
I started this little series of paragraphs really pissed – – at people who are healthy (how dare they!), at young people, people who encourage me to keep on keeping on (oh sure, you try it,) at well-meaning folks who tell me this is a “growth opportunity”… a blessing in disguise for serious spiritual advancement!
And then of course, as night follows day, as I am writing this, I cry, feeling sorry for myself, pitifully, pitifully sorry for myself, and always, always, dammit, end up laughing at the absurdity of it all. For I know deep down where the One True Thing of me really lives, I survive. I am completely intact! The cursed package, the previously robust, svelte, athletic even, container is a facade. The cute clothes adorning curvy hips, the bobbles dangling from ears once nibbled on by seductive men, the ferocious energy I once displayed in jobs and select social occasions as a younger version of myself has all been part of a long one-act play.
My Body Not My Self—The Gameboard
Play, that’s it! A fraud perpetrated on myself, a kind of make believe colluding along with everyone else in our society. The lies we tell ourselves about who we are are just that: lies. A deception so sophisticated we drink it up like Adam and Eve, until of course the body starts breaking down and we are naked. But the beauty about being naked, which is to say, exposed for not the Who but the What of us—of me—the essence that lays beneath the facade, is not just the truth insisting on being released. It is that kernel, the seed that carries the One True Thing of “me” effortlessly given by life’s originator itself, a Grace not of ourselves. I can pretend I make myself but at the end of the day I know I cannot. I can only grow, morph, transform even as I chafe against the constraints of Earth School.
And of course I understand, clearly, “ah yes, this is how it was always meant to be.” The thing we thought we were will always unfold, or emerge, or transform— whatever language you want to ascribe to it—into the state of being, of awareness, evolution one could say, it is meant to be. The beauty of each state has been intoxicating until of course, it wanes, followed by disappointment, anger, regret, sorrow, a husk of its former self waiting for the new perspective to gradually come into focus, with or without benefit of a literal, physical vision loss that forces not a narrowing of sight and understanding, but an expansion of it.
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.
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”…
… 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.
You learn a lot about yourself and others when you are in a physically compromised situation like I have been for the last six months. Between a couple surgeries and multiple fractures in my back, I’ve been laid low. Having a history of being fiercely independent previously, I have had the opportunity to learn the fine art of being dependent on others, at times feeling like a burden, a very uncomfortable position to say the least!
The Spiritual Squeeze
I have been forced to learn about patience, humility, and grace, none of which comes naturally to me. Quite the contrary. Being a single person for most of my adult life, I have taken undo pride and no small amount of egotism, feeling quite self-satisfied with my own fortitude and sufficiency.
Asking others for help now, sometimes from the smallest gestures to larger ones that might inconvenience them, has been challenging and sometimes downright painful for me in my current situation. It has come easier though is still uncomfortable and sometimes laced with fear and guilt.
I have found some people are generous and offer willingly while others get downright nervous or withdraw, pulling back with the subtlest of mortification, their pupils contracting inward scanning their own lives and responsibilities. Then there are those who offer but don’t really mean it, mostly unavailable when you get right down to the specific request later on.
It is very easy to be judgemental about this latter group, having operated from this very behavior myself in the past. I want to judge them when they turn me down, usually feeling a bit sorry for myself in the process. It is a lonely road. But the catch is, while I want to condemn them for being selfish, absorbed, uncaring or unsympathetic, the finger has quickly curved in on myself with the whiff of past recognition.
One of the greatest gifts of my life, and I say this with all humility, is the occasional ability to move quickly from judgmentalism to forgiveness to acceptance. This was aided not long ago by flashbacks of moments when I’ve declined to help others during my far more vigorous, busy and able-bodied history. I remember drawing away, pulling back, thinking I’ve got too much on my plate, sometimes offering help but knowing I don’t really mean it myself.
Recently I asked a woman in my apartment building if she could put a pain patch on my back and be available if I needed help for a few days, trying to explain that my regular backup people were away. Recognizing her reluctance from the get go, I tried to make clear it was short term. Her response was vigorous and persistent, telling me she was very busy, she wasn’t the best person to ask, she’d do what she could but couldn’t make a commitment.
Invariably she kept steering me away from her, stating she worked 55 hours a week, could I get a nurse, call the ER, whatever. I like to think my decline of help to others was gentler, more subtle, but guessing I’ve been as transparent at times as she was with me, I doubt it. Becoming more angry than fearful I wouldn’t have help, I pressed her and she ultimately relented.
Remarkably, while I was very upset initially, I moved quickly to taking stock of my own past behaviors in this regard, knowing, knowing not only did I have to forgive her but also forgive myself. This struck swiftly and thoroughly and I felt relief, free of having to project my judgement onto her. This forgiveness and relief lasted about 12 hours!
It is a hard thing at times having to take a steely-eyed look at ourselves, yet without examining our own behavior, what good are any lessons that are presented to us. After all, isn’t that what we’re here for? To learn, to grow, to evolve, to transcend? If I cannot forgive her how can I forgive me, and vice versa? We are all on a path at times intersecting with others, teachers of a sort, and presented with these golden opportunities. While this might seem like such a simple example, for me it is no less important than the earth shattering larger spiritual or ethical challenges in life.
At the end of the day, we are all at our own place of consciousness and development. When I forget that, that someone else no matter how obnoxious or irritating they might seem to me, or self absorbed and self centered, I am the one who suffers on the inside both emotionally and spiritually. I suffer in the judgment of that other person, But mostly I suffer in the condemnation and judgment of myself. To love oneself is just as important as to love another, to have compassion for the impairment that may be developmental, less visible than broken bones or surgeries in another, that is no less real but far less obvious.
The seemingly complicated state of fleeting forgiveness towards my reluctant neighbor squeezes me spiritually to step back, to really assess why I’m hurt, frustrated or scared and to at least try to identify with her. And even if I can’t stay in that space, I know I’m able to return to it at some point. Oh, the lessons of an illness, what consciousness-raising grist it provides for growth, acknowledging she too has her own struggle of guarded isolation and remoteness, filled with fear and self protection that felt as threatening to her as mine was for me in that moment.
And So It Goes
At the end of the day it does no good to compare me to her, her to me or even her to the two steadfast friends who have provided support and compassion but just happened to be gone at that time of seeking another’s help only to be thwarted by my neighbors reticence, no good at all. Identification is one thing, comparison quite another for comparison is filled with judgment. Whether I get irritated or not is irrelevant at the end of the day if she’s doing the best she can as I was in earlier situations—and even now—but lose the thread of ongoing understanding and forgiveness as a constant I can return to. Because I will invariably have to repeat the lesson, God willing, and by my own intention, be squeezed into that place of love and forgiveness of self and another we all seek until it all sticks.
Suicide! With Kate Spade and Anthony Bourdain’s recent suicides, a national conversation has occurred. It happened after Robin Williams’ death as well only to fade away like so many other shocking events in contemporary life these days. People are genuinely sympathetic and empathetic for a time only to fall back into daily living. It’s natural enough, of course. Read more →
How long it takes to get to spirit. Whether you believe in God, have a knowingness about Him or are an atheist, there is a spirit in mankind that is undeniable. I recently finished When Breath Becomes Air by Paul Kalanithi about his life and death on the planet. In the living parts he clearly describes the tension between the two states: of the linear, scientific world and that of a kind of awareness, consciousness or spirit. Oh, he doesn’t use that term exactly. Rather, he talks of meaning, morality, ethics, connections between people in such a way as to define the untamed heart. Channel it as he might, he seems to bypass the heart to the brain, the mind, as the knower of things, the mechanism for meaning, or so it seems. He thinks of it as his identity, the mind, and yet he learns a more complete lesson in the end from metastasized lung cancer.
Being Loved Into Death
For it is not until nearly the end as he approaches the culmination of a career “cut short” as a promising neurosurgeon and scientist that he is required to leave the brain behind. Ostensibly, he is drawn to the wordless yet highly communicative heart as he defies his scientific linear training as a physician and connects only with spirit–his wife’s, his infant daughter, his parents, siblings and close friends through love, the unmeasurable ‘mechanism’ that is all of us. Always present but taking a backseat in the physical world, the Spirit lies in wait, our true nature revealing itself, silently, breathlessly, subtly, until we are ready to live on the buoyancy of only that. Kalanithi seems to convey that Love or Spirit carries us from one world to the next. And so it was, as brilliantly, as giving, as kindhearted and hard-working as Kalanithi had been as a neurosurgoen, always striving towards accomplishment, no matter how noble, that ‘his’ Spirit finally, patiently requires his attention through a different kind of giving of himself. With a foot in one world, he straddles the next describing his ‘death’ experience.
I loved this book, the Breath–Air book by Kalanithi. But oddly, like all of us ensnared in the body, I was waiting for his final insights sooner, restless for spirit to reveal itself through the written word. Finally it came although from my perspective, it oddly was the deathbed scene with his words to his daughter, and wife’s conveyance post-passing afterwards, that the true nature of the spiritual man known as Kalanithi is revealed. By that I mean that even though using words to communicate, it is only in the incalculable energy and action of a lifetime of intention that it becomes evident, that and the gift of his shared death. Implied in this is knowingness. We know it when we see it as did he. Ironically, so often Spirit reveals itself as an aggregate looking backward even if through the distillation of a high voltage moment.
What Kalanithi took a short lifetime to discover is that his life’s meaning through work, giving and connecting is part of his identity as neurosurgeon/scientist, it is not the whole of it. While his words throughout the book, the description of his struggle as a physician, son, husband, and ultimately father is carried through linear, descriptive fashion, it is his effort to give of himself through sharing the ‘death’ process that reveals his spirit. His initial intention to help relieve the suffering of mankind through his profession sets the stage. The final eight or nine months he writes the manuscript however renders the true language of Love, his ‘spiritual identity,’ if you will. Ultimately, the body with it’s ever-fascinating brain is merely the delivery system of the less visible but more potent heart, the seat of Love that operates both here and in the hereafter.
I often wonder, what would I do, how would I behave, could I give anything to anyone, let alone a wider ‘audience’ as Kalanithi has done, if I knew the impending demise of my earthly body was ticking against a more specific clock. Sure I know the idea of that. But of course the idea is not the knowing. ‘Knowing about’ is never the same is knowing. The soul lives on. The spirit that reveals itself to me in flashes continues once the body ‘gives up the ghost’, of that I have no doubt. And yet, trapped in time even when it seems there’s little of it left, what would I choose to do, how could I extend myself to others, how would I spend my precious final days, weeks, maybe months offering meaning to anyone?
Jocelyn P. Newark, R.N. talks with Paul Kalanithi, M.D. Resident in Neurological Surgery, at the Stanford Hospital and Clinics on Wednesday, February 5, 2014. Stanford University ( Norbert von der Groeben/Stanford Hospital and Clinics )
None of us can know until we ‘get there’ if in fact we have any forewarning at all, that our time is truly running out. And yet, Kalanithi’s thought-provoking book prods everyone to examine themselves, for me to examine myself. How can I commit to extending whatever gifts I may offer to others even if I have no information about life’s deadline. And even if I don’t have an exact answer now, there is an answer. It is my charge to find it, stumbling through to the end until it– Spirit–presents itself as to purpose and expression. After all, at the end of the day, Kalanithi’s book is not just about his death, it is about his life. What’s more, it is also about our own, about what it means, about the aggregate of a lifetime of intentions and our expression through one final gasp.