Be forewarned: I’m writing from the dark depths, and this isn’t going to be cheery. (You know I don’t do cheery anyway). Beautiful, heartfelt, soulful? Maybe. But not easy. I’m on the brink of death and as Ann Voskamp’s words so often and poignantly describe me, I am in the ferocious thrash for joy. (Still, or again). I wish I could learn to do this with graceful surrender, but it seems to just elude me, to not be in my DNA. Maybe someday, but not today. I feel connected to something vast, expansive, and terrifyingly deep. Actually, I’m coming to a place of accepting that this is part of who I am. I used to conceptualize this depression, this cycle of deep, dark, lonely, gut-wrenching pain and grief as a curse, an undercurrent of bad karma, a chain between my ancestors and I that I needed to somehow break free from. But it’s slowly sinking in that all that past was just a catalyst for this moment- my very purpose of existing here in this life, in this body, in this time, having this experience: to bear witness. I don’t know if I’ll ever find joy in it, at least not when I am in this active dying phase. But I now know I can come to accept the process a little more and can stop trying to pathologize it, or make it into something I have to fix. And maybe I can come to love it- there is a certain tragic beauty to it.
Do you know how the physical Universe works? Well, for one, we know it is constantly expanding. It’s growing. And growing. And stars, miniature versions of the whole, are created through very violent processes, with words like collapsing, and super heated, and fusion being used by astronomers and astrophysicists to describe the birth of stars. And the death of stars? Even more romantic. As stars age they lose the ability to hold themselves together, and they start to slowly expand until their atmospheres dissipate off into space, forming nebulas, like this one.
(A dying star is throwing a cosmic tantrum in this combined image from NASA’s Spitzer Space Telescope and the Galaxy Evolution Explorer (GALEX), which NASA has lent to the California Institute of Technology in Pasadena. In death, the star’s dusty outer layers are unraveling into space, glowing from the intense ultraviolet radiation being pumped out by the hot stellar core. Courtesy of space.com)
They then collapse, or shrink back into their cores: white dwarfs, which are highly concentrated cores of bright light that slowly burn out. At the point they become white dwarfs, they are already dead stars, nothing remaining but their cores. If these are using only helium for fuel, they disappear entirely. But if they are able to fuse the helium into carbon oxygen, they leave behind extremely hot, earth-sized diamonds. No kidding. It does bring another level of understanding to the diamonds left for me.
And then consider our galaxy, just one of millions in the Universe. Our galaxy, a spiral galaxy, is the Milky Way. When you are fortunate enough to look up and see the Milky Way in the night sky you are actually looking through the galaxy at a cross-section, or sideways. The center of the Milky Way, the galactic center, is thought to be a supermassive black hole- Sagittarius A. Black holes are known to consist of such density that their gravitational pull swallows up (and holds in) everything, even light. Nothing escapes.
Gravity is an interesting force of the Universe, isn’t it? Without gravity, we wouldn’t likely exist here on earth. Without it our galaxy wouldn’t likely exist. But yet it weighs us down, sucks us in so much more than we realize, until we have those rare, fleeting, blissful moments of experiencing zero gravity. You know, those ones when you are conscious in timelessness, when you just exist in the moment and really are okay.
I think the implications in the parallels between the dynamics of the Universe and the dynamics of our human experience are crystal clear and further tangling them away from one another would be dishonoring the beauty of it all. We are the Universe experiencing itself in human form, and our connection to the stars, the galaxy, the Universe is our connection to The Creator, The Source of all.
One of several things I learned about myself since writing last is that I was born under a constellation that put me in direct line with the super galactic center– the dark, dense heart of the Milky Way. My natal chart contains prominent influential placements of asteroids Chiron, Hylonome, Hekate, and of course, Pluto, the amazing planet we’re just getting glimpse of, but have felt the pull throughout all time. All of this resonates deeply with me, and helped me to realize that this drama is playing out exactly like it’s supposed to. But it doesn’t make the pain any easier. I’ve never been one to shy away from the pain (believe me, I have done plenty of crying in my lifetime), but sometimes the blackness feels so vast and engulfing, and the pull so strong, I shrink back in fear of being swallowed or suffocated by it. It feels like death. I know from logic’s standpoint that seems ridiculous, but the line between living and dying is perilously thin, and balancing on it for so long is exhausting. What happens if I just let myself fall to the “dark side?” Will the dam break and the flood drown me? I fear psychiatric hospitalization really. And I can’t afford that- too many people count on me. Nor do I have any desire to go back on psychotropic medications. Some people, including my therapist, would say what I am experiencing is not a depression, but part of my evolution process and how I am experiencing it- these tumultuous, spiraling periods of intense emotional processing. They say it’s an exhaustion that I have brought on by not caring for myself, not putting myself first, expending energy in ways that does not refill me, just burning helium, and not fusing it without carbon oxygen. That probably is partly the truth, but they just don’t know what I really think about, how hard it is at times. Have you ever stood on the edge of an enormous black hole, peering into the event horizon, feeling its pull on you as the tidal forces want to rip you apart into a zillion tiny particles? Maybe it’s that Hylonome, just sitting there waiting, or Pluto in my first house, right on top of me, pressing in. Or that damned Hekate with her snake medicine. Can we ever truly be free of who we are while in these bodies? Maybe. I’m trying to find the way, but gentleness and surrender don’t come easy for me, nor do they seem to be the dynamics of the Universe. I know that I am so much more than my experiences, my constellations, my thoughts. But the disconnect with my soul, my Higher Self is painful, and it feels light years away most of the time.
Since last writing I have settled with SunLife. Their attorney reached an agreement with mine for a sum of money (not including my life insurance policy amount, which I will never collect, nor will I ever be able to obtain life insurance), but after the attorney got her 40% and expenses paid, it was a very small sum of money really. This basically sealed the deal- they are no longer obligated to provide me policy benefits and I am no longer entitled to what was legally and rightfully mine. It’s a gross injustice and a classic example of corporate bullying, but there’s nothing more I can do. Although my attorney was proud of herself for getting as much as she did for me, I’m not convinced she understood the reality of my situation to the degree that she fought for me as hard as she should have. She said we could go to court (no jury trial), with considerable costs, and even if we were fortunate enough that the court ruled in my favor (and they tend to not), all that SunLife would have to do is pay me the backpay they owed me (which is what they agreed to do anyway), and reinstate me on claim. They then could turn around and do the same thing again- determine I’m no longer disabled and not entitled. So it would be a lifetime of constant harassment and stalking. Long term disability policies are really not meant to be long term, and they can and will kick you off. Legally, the only thing they need to deny claim is evidence of one doctor (which they pay), stating you’re not disabled anymore. This is a doctor you never meet in person, never even speak to, who is sent medical records (you will never know which ones are NOT included), and who reviews these records and decides whether you are disabled, or not. The doctor does not even have to be a specialist (in my case, an oncologist). This system does not favor the claimant, the disabled person. And so SunLife kicks me off claim, saves their measly $1700 a month, and leaves me financially devastated, with no income. The financial impact for us has been huge, as we continue sliding down with this avalanche.
This marathon race of managing metastatic disease is not for the faint of heart. So many people have implied to me over the years that I should just be grateful to be alive. It is kind of ironic that cancer patients can be feeling suicidal while at the same time they are enduring hard treatments in fighting for their lives. And I think what makes it especially hard for me is that I have no evidence of disease. People don’t understand this. They don’t understand why I have to still be in treatment if there’s (as far as can be detected) no evidence of cancer. They don’t understand why I’m not whistling while I’m chasing butterflies in the park. Because I don’t truly get my life back. I am carrying this cross, this thorn in my side, the rest of my life, however long that turns out to be. My cancer is highly aggressive. In less than nine months I went from having no evidence of cancer to having a baseball sized tumor. And with scans once a year, I am one scan away from being told my cancer is progressing. The treatment is keeping it at sub-detectable levels. It’s possible I am completely healed. It’s also possible the chemotherapy will fail me, as it previously had. I don’t live in fear of it by any means. But I walk with one foot in the palliative care land of the dying and the other foot in the unforgiving land of the living. That’s no easy task. When one is actively dying the focus becomes narrower and narrower as responsibilities fall away and become meaningless in the face of death. A sink full of dishes isn’t even given a thought, shaving the legs becomes unnecessary, and those bills will still be there after I’m gone. The task ahead becomes just to die, and actually offers a much needed relief. But in life I have a lot of responsibilities and expectations put on me. I don’t get the privilege of dying yet. So there’s all that to tend to, plus managing a chronic disease with increasingly debilitating effects of treatments- a disease that at any moment can rapidly progress to my demise. And losing my income has meant no financial resource to cover expenses not covered by my health insurance, like naturopathic doctors and treatments, lymphedema therapy, alternative mental health care, etc.
I would love nothing more than to go back to work. It was hard enough losing that part of my identity, that sense of purpose. But now that we’ve been thrust into worsening financial circumstance, the motivation is even stronger. I miss the financial freedom, the ability to travel, to do things we enjoy doing. I miss not having the security of knowing I have a place to live that is clean and safe and mine. I hate that my husband, who works so hard, and who is going backwards in salary too, has had to give up scuba diving, and other things he loves because we simply can’t afford it. I especially hate that he’s had to take a second weekend job, leaving him no days off, having to endure the physical pains of old injuries just to barely survive. But I’m truly in a tricky spot, and I don’t know what to do. I’ve applied for social work type jobs, and haven’t been invited to interview for any of them. Maybe it’s the gaping hole in my resume? But realistically I’m not cut out for full-time social work anymore. And I’m not even hopeful I could get hired, when I have to disclose I need time off at least every three weeks for chemotherapy and cancer treatment management. I don’ think there’s any job I can manage on a full-time basis because of the fatigue and ongoing effects of the toxic chemotherapy, radiation, and surgeries I’ve had. I need a lot of flexibility and patience with my ‘chemobrain’, which gets especially limiting when I’m under a lot of stress or when I’m exhausted. I’ve been scrambling to try to figure out non-traditional avenues for financial resource. Over and over I’ve heard, “Do what you love and the money will come”, so I’ve followed some of my passions- I got certified as a SoulCollage® facilitator, got certified in level I/II Reiki, explored selling essential oils, and even considered becoming a realtor. I can’t seem to materialize any of these things, mostly because of lack of resource. My husband and I even recently tried an experiment in manifesting, where we intentionally looked for and expected to find pennies. Such a common experience to find a penny on the ground, but days and days went by when we diligently looked and didn’t find a single penny. I don’t know what it is- the Universe seems particularly silent and I feel so unsupported. I have often found what I think I need and want is not consistent with what I get. And that can feel hostile, conspiratory, especially when it’s unrelenting. So higher forces must be at work, because there’s no way all this keeps happening just by chance. But I feel blind, stumbling around in the dark. I can do the in-processing of it, as difficult as that is, but it’s the out-processing I have no idea how to manage.
It isn’t just losing my disability income. It’s one thing after another. I know I’ve written about this before- how I came to the door of cancer already with maybe a couple lifetimes of baggage. We moved to Austin from California for a few reasons. While most people seem to think it was to help out my older son and his wife and child, that’s only partly the motivation. From our side of the decision it was also attractive to have the financial (and physical) assistance provided by having them live with us. Pooling our resources offered us all a better standard of living. We sold our house in May so that we could buy a smaller house (easier to maintain and more energy efficient) with more space efficiency, providing more actual living space for my son and daughter-in-law. We were all so unhappy at that house, for a variety of reasons, but size and space and safety were chief among them. So all six of us have been living in an apartment since May, with plans of building an accommodating suburban track home in a local community. But my daughter-in-law has since decided she no longer wants to live with us, and so we will be missing a large chunk of money we used towards paying for housing. We entered a temporary situation with some amount of stability and a clear idea of where we were headed, and plans have dramatically changed, leaving us scrambling to find a place we can afford on so much less money than when we moved here. We’re trying to figure out how to get rid of a lot of our stuff, which itself is a lot of work I don’t have the energy for. Prices in the Austin area have dramatically increased since we moved here, and we’re priced out of the market. Even rent is very high- more than we can afford or the standard of living is not what we have been accustomed to. While we did make some money selling our house, we were only in it two years, so after paying realtor fees, costs of selling, and paying off credit cards we had used to improve/repair the house, we didn’t come out ahead overall. We couldn’t afford to buy the house we sold. We had put a considerable amount of money into the house we planned on building too, and while they said it was non-refundable, they agreed to give some of it back, but we still lost some of it. We’re bleeding money. I’m watching my SunLife settlement money erode away as we seem to be making one bad choice after another in trying to find someplace to live. The carpet’s been pulled out from under us and we don’t know what to do. Our lease is up in early October, and it’s then we will part ways with my son, DIL, and granddaughter. The rent where we are living now is unaffordable without their financial contribution. So we have to move again, but we have no idea where we’re going to end up. Eventually the settlement money will run out, and never having had any substantial savings before, we’re trying to hold onto it as much as we possibly can. With all of this caving in on us, I am feeling buried under it. I’m so tired. So tired. I’m not even fully recovered from the move from California, and here we just moved again in May, and are facing a definite move to an uncertain place in October. It sounds like an adventure, right? I should be excited. This is not at all what I had in mind for this juncture in my life.
I think what I understand about mid-life is that it is a time when a person evaluates their life, moves away from self and aspirations that lend to self, evaluates their contribution to the larger community, and spends some time letting go of things and finding new areas of expression. Usually by this point a person has achieved career stability, and thus financial stability, supporting the further exploration of one’s passions. Sometimes in resisting letting go of youth the stereotypical response is a man will buy that sporty car he always wanted, but could never have because the needs of raising children prevented that from being practical. Perhaps a stay at home mom will start college, have a career change, volunteer somewhere, no longer bound by the demands of raising a family. A lot of people have conceived our current state in these terms- “empty nest”, or “mid-life.” It’s interesting because I do feel like I am in the midst of an existential crisis, but I’m not sure age has fueled it as much as circumstance. I went into surgically-induced menopause when I was 33 years old, and lost my career at the same time. So I was thrust physically and emotionally into a quasi-midlife situation much younger than I should have been, but minus all the accoutrements. Cancer forces a redefinition of self because it strips away so much, and when you’re a ‘lifer’ (metastatic), it’s almost impossible to not define yourself by that. I think defining an experience by “empty nest” or “mid-life” has negative stereotypical connotations, but it has positive ones too. While facing old age, looking towards death, letting go of those sentimental times you shared as a family can be painful, the benefits are more personal freedom, greater privacy, less responsibility, more time and money to pursue personal and shared interests. I always looked forward to it as a time to regain some parts sacrificed, a time when financial stability would provide the foundation for soul-enriching pursuits, a time to sort of relax, slow down, savor the wine. I’ve been on full throttle since I was 15 years old, so I looked forward to the time.
But now here we are, looking around, wondering what in the hell we did wrong. Really, we did nothing wrong, and all is as it should be. It’s just not at all what we envisioned or worked so hard towards. We will likely never entirely be empty nesters in the usual sense. I have a son who needs considerable support and always will. He is incapable of being independent any time in the foreseeable future. I lost my career and everything I was ever working for materially, including the ability to travel. I see people going on retreats, vacations, to conferences, and I feel the sting of sadness because these are things I don’t get the privilege of, both because I don’t have the money, and because I am tied down with responsibility. So I’m in this weird space of not having any of the joys of my children being young, spending time with them doing family things, but I don’t have the total freedom to pursue my own interests either. I feel stuck, and life feels pointless. One day rolls into the next and the rising sun offers such little promise.
My grandmother turned 93 years old in March. Losing my mother, her only child, has been so hard for her. More and more she is sharing with me how she is depressed and feels like she is just waiting to die. She is very limited in her ability to drive, health problems keep her tied to her husband in ways that don’t allow her much independence, and so they are spending more and more time in their apartment. She says she doesn’t have anything to look forward to- no new cars, no new houses, no vacations, no family events. It’s just day in and day out of sitting around in the apartment, finding less and less joy. I wish I had the resource to live nearer her, or at least visit her more often. I tell her, I know it seems ridiculous, but at 42 years old I feel these things too. I’m emotionally and physically exhausted, stuck in cancer treatment the rest of my life, with less and less financial resources. I’m sure to her I seem like such a young adult still, with limitless possibilities. But I don’t feel that. I can’t see a way out. I can’t see anything to hope for, except to hope to come to peace and accept my circumstance.
And I struggle. I struggle with feeling guilty for having these thoughts or feelings at all. I should be grateful. I have a lot to be grateful for. I shouldn’t even consider my material desires, because my basic needs have always been and will always be met. And that’s enough. It shouldn’t matter if I have to live in a “bad neighborhood” or can only afford a “small house”, or maybe even just an apartment, because at least I have a place to live. It shouldn’t matter if I have to get rid of everything I’ve worked so hard for because at least I’m alive. But then the futility of it all brings floods of pain rushing back in. What did I work so hard for? All that struggle and striving to get through college, working full-time, sacrificing so much, for what- to lose it all, to be stuck, to feel powerless over my circumstances? I just want to enjoy life. I do deserve that, don’t I? I want a space to stretch out and do SoulCollage®, to create a lapidary workshop for my incredibly gifted son, to grow some food, some money to go on much-needed retreats, to visit my daughter, my grandmother. Am I asking too much? I feel like I’m arm wrestling God, and as He’s twisting my arm backwards I’m calling, “mercy” louder and louder, but He is relentless in breaking me down into a million shattered pieces. Over and over. Yes, I am exhausted.
I recently read that studies of mothers of disabled children show that they suffer from high levels of fatigue/exhaustion, have more mental health issues, and in more severe situations, have PTSD symptoms on level with those experienced by war veterans. Right. I can relate. But no two individuals with “special needs” are alike. The autism is just one part of the deal, and is hard enough. Since he was 15 years old my son, now 20, has suffered from very violent clonic-tonic type psychogenic non-epileptic seizures. There is currently no treatment other than cognitive behavioral therapy, which is minimally effective, and probably less so with extremely sensitive autistic individuals. (I’m not even sure I buy into the “autism” title these days, but you know, we have to have some way to succinctly describe the struggle). While it’s easy to have empathy for his struggle, the pain and suffering of his physical manifestation, I don’t think anyone who hasn’t experienced it truly realizes how taxing it is on all of us too. My son is completely unaware of what is happening to him during seizure. But we’re left to try to manage his six foot 200lb body so that he is as safe as possible. This often means getting on the floor with him and containing his thrashing as much as possible to prevent serious injury, particularly of his head. He has fallen many times, including down the stairs, so I’m hypervigilant in looking for cues he is about to have a seizure. The slightest guttural sound coming from any direction and my autonomic nervous system immediately triggers the adrenal response, ready to jump into action, even when my son isn’t in the house or out with me. The smallest bump in the night will have me wide awake, listening intently for signs he is seizing. His seizures have gone on as long as 4 hours. I try not to call for EMT if I can help it because there’s not much they can really do for him, it’s costly, and it results in really long, often sleepless overnight trips to the ER while he sleeps off the Versed they inject into him. And I am the one who is primarily with my son, as my husband works full-time. So there have been many instances when I have had to physically manage his intense seizures by myself for upwards of 45 minutes continuously, or stay in the ER with him overnight, losing precious sleep. He had two seizures during our move in May, one the night before we were scheduled to pick up the moving truck. I was up all night in the ER with him and didn’t get a moment of sleep. We got home and I crawled in bed for two hours of sleep before having to get started on the move. Thank God we had some help, but it was still far more demanding than I could tolerate without falling completely apart. I was the one up all night with him in the ER. Me. You know I’ve had 12 years of cancer treatment, four of those years in very aggressive treatment, and that I’m still in treatment, right? You know I have fibromyalgia, lymphedema, neuropathy, bone degeneration in my neck and lower spine, right? And this is just the physical demands of my son’s condition. What follows is the medical advocacy, the constant appointments and support services, the managing and coordinating all of his care, and of course, the worrying, as he seeks more independence and spends more time away from me. And then there’s an entire paradigm of spiritual experience that I don’t really have time nor energy to share. What I will share is that I am running as fast as I can and I can’t keep up with him. I am desperate for help, but don’t have the financial resource to pay for it.
So add on to my son’s intense needs, which are only exacerbated by moving and instability, and my twelve years of metastatic cancer treatment all the financial stress, major moves, significant losses, and on and on. Speaking of cancer and loss- my 12 year cancer anniversary was in May. It went by with not even a single mention. I am always mindful of it, and I always hope someone in my life would care enough about celebrating me and all the hard work I’ve done to stay alive, that it would at least be mentioned. A card, some flowers, that would be nice too. A dinner, even better. But I have a family of non-celebrators. Over the years even my birthday has turned into an indistinguishable day. I have to be the one to organize and make plans for any kind of celebration that happens, and that is often met with a lot of resistance. I just don’t have the energy to fight the resistance anymore, so I let it go. Does it seem narcissistic to want to be celebrated, to feel appreciated? It isn’t even that- it’s the act of celebration. Whether it’s my birthday or someone else’s, or a holiday, or an event, an accomplishment, there’s joy in celebrating, in looking forward to something. I’m trying to learn to find small ways to celebrate within myself every day, but I’m not very consistent with it. My granddaughter’s daily presence has certainly helped. There’s something magical and God-like about young children, isn’t there? She demands that I be present in the moment, and almost always exudes an incredible joy and freshness about life. I am achingly sad that she won’t be living with me anymore. Actually, my heart is broken. We are going to try to stay in Texas, but there’s a likely possibility it doesn’t work out for us, and it grieves me immeasurably to consider that.
Since I last wrote I have processed a lot. I have come to understand that sometimes the final act of healing is in just letting go of the persona of oneself as the griever, the one in need of healing. In that way I haven’t stopped grieving, I’ve just stopped trying to identify myself as wounded. Even though I still feel so very stuck and hopeless in ways, I’ve spent a lot of time churning this stuff around, and I know lots has died in the past few months and something new is getting born. Some circumstances we can’t change, but the one thing that is constant: we change. For the second time I attended the annual Writer’s League of Texas Agents and Editor’s conference this past June. I’ve finished my first novel and started on my second. Writing has slowed down, and I haven’t touched it since I left for my mom’s ash scattering in April. I really didn’t want to go to the conference at all, but I paid for it last December, and I wasn’t going to waste that money. I had a free agent consult for registering early, and so I met with her as well. But it was tough. The sense of hopelessness wound around my existential crisis had me in an emotional place where I was fighting back tears the entire conference. I just want to give up. And the more I shared this with people, the more they encouraged me to keep going, that giving up would be the worst thing I could do. It’s not that I think I’m a bad writer (actually, my first professional edit is proving that I’m a lot worse at writing fiction that I thought I was), or even that I think I couldn’t accomplish publication. It’s that it requires such an intense commitment of resource (time, money, focus), and a steadfast desire to keep trying even after a hundred rejections, some of them rather harsh. I don’t think I have the fight in me. Did I share how exhausted I am? See, this is one of so many things I’ve learned watching women die of cancer over the past 12 years- don’t tell a dying woman “not to give up”, regardless of how close or far you think she might be to death. If she needs to die, give her permission to die. We’re all going to die eventually, and so often we expect dying people to prolong their suffering to put off our pain, so that we don’t have to look at death in the face and ask the hard questions about what it means for us, so we don’t have to feel the sting. Look, I don’t judge the people who offered me encouragement. I am grateful for them, that they would even care enough about me to offer something. If the shoe was on the other foot, perhaps I might feel obligated to do the same in bolstering a discouraged person. But my experiences don’t lend themselves to the niceties of social convention. Hekate is a powerful goddess of the underworld, of transitions, of crossroads. She unapologetically ushers in death so she can guide the way towards re-birth. And so she teaches me the need to die as strongly as I live. Actually, I feel like I die with much more passion and emotion than I live with. Yet, dying while living is still an experience of living.
Death is a recurring theme in my life. It seems to fuel a passion which becomes the wellspring for all my creative endeavors. I write about death in my stories. And so, I research it a lot, work with it in archetypal form. I recently wrote about making a Memento Mori card for the SoulCollage® deck and quoted from Stephen Jenkinson, a death shaman.
Stephen’s strong message is that we’re not really living fully unless we’re willing to take on the hard truth about dying, about death, and not only that, we must love the end of something as much as the begging and middle of it. I understand this intimately. I don’t think you can face metastatic cancer and not gain some deeper appreciation for life, for the cycle of life, for the impermanence of all in our material world. But my challenge is this: how do I live in this daily reality of the impermanence of all things and not be overwhelmed by grief? While Stephen challenges us to embrace grief, I am asking, what if that’s the only thing some of us can embrace? You would think being awakened to death would make one celebrate life more, not less. And I know what my Christian friends would say about futility, about purpose. But even as a sold-out, on-fire Christian I still had this gnawing ache of longing to go home. I think a lot of these themes and experiences have woven themselves into my stories, tinges scattered throughout my characters. How could they not? But I just don’t know if I have it in me to strive to be a “professional” writer. It’s so much harder than people realize. I’m not saying I want to quit writing. I’m just saying I’m exhausted and don’t know if I have the fight in me to push ahead to do all it takes to become a published writer. Besides, I need money now.
Which is a whole different existential dilemma. At the end it all boils down to the story we tell ourselves. Even a homeless man can find something to be grateful for, and even a girl in a family with twelve siblings can feel alone. The story I have been telling myself is that my husband and I both worked really hard to earn master’s degrees in hopes of having financial security and to afford a certain lifestyle, but because of my cancer we reached the pinnacle far too early in life, and didn’t even know it, and have since lost it, and are on the slide down, more and more sloughing off as we go. As we retreat into ourselves our circle of influence grows smaller, and even our struggles feel in vain as we silently struggle alone. The purpose gets lost in some narcissistic fable of martyrdom and victimization. That’s a painful story to possess.
Maslow’s hierarchy of needs lends itself to this sort of reality, that we get “stuck” in the lower constructs (or realms), struggling to meet needs, before we can progress to the higher constructs to achieve self-actualization.
But I don’t know if this is entirely the truth either, because so much depends on our reality, and our awareness of our own ability to shape our reality. In that sense it isn’t our basic needs that become the problem, but our fear about not having those needs met. I’ve found that when I am stuck in that fear I really can’t progress to self-actualize. The fat man is always hungry, never feeling he’s had enough to eat. And equally the Ethiopian girl hasn’t eaten for days, and her starvation has made her not even hungry anymore. So when is enough, enough? And when is not enough really all we need? These are really hard questions we all have to ask as inherent to our motivations, and the answers often shift depending on how we’re processing and surrendering to the circumstances we have manifested in our lives. I haven’t found that balance yet between accepting personal responsibility and surrendering to powers that be, when to know if I should try just a little bit harder, and when to know when to let go and accept. Either way has its own struggle. But I do know this: My default setting is to try. I keep trying, and keep trying with all my might. But I am running out of try. And all my well meaning teammates just keep telling me to get up and keep trying. Maybe I can do this, or do that, but they just can’t see that I can’t seem to manifest much of anything right now. I am spent.
I’m sure my lamenting seems disconnected from a deeper truth, because it can feel disconnected at times. I project it out as a struggle of material need and want and lack of resource, but it is so much deeper and more profound than material manifestation. It also has to do with my purpose, and how that is intertwined with my worth in a material way. I feel like I’m not living in my purpose, like I’m not enough. Me just being me isn’t paying my bills. At the same time, I can’t seem to manifest anything right now other than just being. That is overwhelming enough. This has gone on for a long time for me now- really since I quit working in 2006. If I could have a single wish it would be to just have money come to me easily. It’s not that I expect it to make me happy. It’s more about freedom than happiness to me. Because while I’m as emotionally passionate as I’ve ever been, my ability to physically strive and work hard towards anything has languished. It’s that exhaustion. I need the freedom to just rest. And I really don’t know what to do. It’s putting me in a state of continuous anxiety because I feel myself leaning forward into the future, just trying to manifest something, some type of tangible change that improves my financial situation. It feels like having emotional restless leg syndrome. I’m struggling with just being present, being in the moment, accepting myself where I am, because when I go to a place of being conscious of timelessness I feel the absolute nothingness of myself. In that event horizon I see the futility, how we’re one gigantic living organism, functioning in total perfect connectedness, and how we each die, the stories of our lives lost through time. We are immediately affected by individuals in our lives, but what about five generations back? Ten, twenty, or thirty? We know nothing, except perhaps rumor, of the individuals who lived their lives even 100 years ago on the very planet our feet touch. What remains but decaying headstones? The ancestral threads are woven to become a thick cord, thickening with each generation. So they run through us like a raging river. But in a hundred years from now it is likely that no one will remember me, they will possess nothing they can confidently attribute to me, to my life, to my struggle and all my hard work here. And so we live for the whole, we die for the whole. But what’s the point? I know the selflessness of Christian theology. And I know the hedonism of New Thought. But what is in between? We are each on such a unique journey of the soul, and so in that uniqueness must be inherent purpose. I don’t know what my purpose is. I’d like to believe for right now it’s just to keep exploring myself, my experiences, to sit with the full range of emotion and to just keep testifying to it, writing, writing, writing. I certainly get some encouragement in that way. But I don’t get a single penny for it, and I need to eat. So I doubt. I doubt myself. I doubt that I am doing what it is that I need to be doing. Is any of this having any kind of affect? Is my presence here, this long, brave life of struggling to overcome, and being so public about it serving anyone in any meaningful way? I don’t know what else to be right now but what I am. And maybe doing without would feel a whole lot better if I knew someone was benefiting from my struggle. Maybe this constant cycle of dying and birthing, dying and birthing would feel like less of a trap if I could connect it outside myself with a service to the whole in a tangible way.
I guess I am finding myself in a position of asking for favor from the Universe. I have spent most of my life striving, working really hard, and I don’t have it in me to continue striving. I’m exhausted. The emotional processing is enough. So it has to come easier. It just has to. Or we, me, my husband, and adult autistic son are going to be stripped down in a way like we’ve never been before, which within itself is not going to be an easy process. I’m crying mercy, God. I’m crying mercy…………
……be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a foreign tongue. Do not seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer. Perhaps you do carry within yourself the possibility of shaping and forming as a particularly happy and pure way of living; train yourself to it- but take whatever comes with great trust, and if only it comes out of your own will, out of some need of your inmost being, take it upon yourself and hate nothing.
~ Rainer Maria Wilke, Letters To A Young Poet