I last wrote in July, so I’m breaking the pattern of having reduced my writing down to once every year or so by writing just a few months after my last. A lot has happened since July, but most of my friends, family, and scar clan sisters follow me on Facebook, where I wear my heart on my sleeve. So there’s not a lot I can share outside of that that will seem like news. It’s the usual, but my 93 year old grandmother’s husband of 25 years passed a month ago, leaving her a widow for the third time, and having lost my mother (her only child) in April 2014, this has weighed heavy on my heart. I really do not like being so far from her and feeling so helpless to do anything for her. God help me if I should live as long as her.
In early October we moved out of our apartment and into our new house, parting ways with my son, daughter-in-law, and granddaughter. That brought up a lot of my own abandonment issues, which are deep waters to tread. My daughter came for a short visit in late September. I am grateful our relationship has grown and I can be the supportive mom I always wanted to be to her- it hasn’t always been like this. And my youngest son, the one with autism, spent a few days in ICU in August (again), intubated because of uncontrolled seizures and medication mishaps. While the medical system would likely say it isn’t possible that he died, as they had him stable the entire time, and his life was suspended, a machine breathing for him, I knew what was happening in the spiritual realms while he laid deep in the bed. So I was not at all surprised when he shared a couple days after he came home that he had a near-death experience. He’s been flirting with it for a while, but this was the first time it really came down to him making a choice- his work isn’t finished here, even though he’d like it to be. And this, among many others things, is why I am compelled to write so soon- it isn’t to share news, but to share something of my experience. I think this is what has come to be expected from my writing anyway.
Stumbling past Fall, Dia de Muertos having recently passed, and Winter looming, death is as fresh on my mind as it has been for several months. In mid-October my husband and I drove into downtown Austin to listen to Stephen Jenkinson talk and read from his book, Die Wise. I wrote a bit about him and his Griefwalker documentary last writing. To get to see and hear him in person was quite an honor. I spent the entire two and a half hours crying. It solicited a long overdue conversation between my husband and I (not because I was unwilling, but because he just wasn’t ready). I woke up the next morning to read that my friend and inflammatory breast cancer sister, Meichille had passed away. Meichille was 44 years old- eight years with metastatic inflammatory breast cancer. I laid my hands on her more than once, so to read of her passing was heart-wrenching. I very recently lost another sister who I was also close to. Amber was 30 years old- diagnosed when she was 26, and a year with metastatic disease. This isn’t easy. There’s always an odd mixture of emotion when a sister passes. Part of this cancer deal is death. Lots of it. But I don’t want to spend many words on death, as I wrote so much about that in July. I do want to say that Stephen nailed it right in the heart in so many ways, and I believe for the first time ever I experienced true understanding of the dilemma of palliative care I am living from someone other than a fellow metster. But what is palliative care anymore? It used to mean one is dying, and it was used as a transition to offer comfort (pain management) to ease into death as much as possible. Now we are continuing to actively treat patients for disease while they are in palliative care, and so the lines are blurred, and for those of us living along those lines, we’re constantly trying to figure out where we are in the “arc of our lives”, as Stephen calls it. Am I living, or am I dying? I’ve been writing about this for a long time now- the tightrope. So it was incredibly validating to hear it put into such compassionate words from such a wise man- a true death shaman.
It might seem melodramatic to someone who isn’t living it. I imagine I would think, if it wasn’t me going through it, that I just needed to get over it already. After all, I do have no evidence of disease (NED), so why keep milking a dry cow? I mean, we’re all dying, right? Every time I go to the cancer center for treatment, on my way into the treatment room I pass a bell anchored to the wall. It is there for the patients who get to finish treatment, who can have a tangible celebratory ring on their way out, presumably for the last time. It’s like seeing the view from Mt. Everest. (Remember when I wrote about that too?) But for me it’s a continual reminder that I will never ring that bell again. Ever. Cancer has become the thorn in my side. The chronic disease. I turned 43 today and I’ve been in treatment since I was 30 years old. And don’t get me wrong- I’m grateful to be alive. But it comes at a cost. A really high cost. And they don’t tell you about those costs at the beginning of the deal, because we live in a death-denying culture that expects us to keep fighting until our last dying breath, no matter the cost- to “give up” is failure. The last thing I ever wanted to do was fail my kids. It’s those darned abandonment issues of mine. But they served me well. And maybe that’s why I needed them. I have a hell of a lot of fight in me. It’s gotten me to twelve years of cancer treatment, nine since metastatic progression, and eight years NED. It’s quite miraculous really. But I am an outlier, the defiant anomaly. Even among my metastatic sisters I’m not quite where they are. I would think they look to me for hope for themselves, but also questioning if I am really one of them anymore. I’m not sure they realize that I’ve been where they are- nine years ago- and I am still one scan away from being told I’ve had disease progression. But what does this mean for me?
I remember the distinct dilemma I had when I was done with all that hard treatment the first go-round: how do I get from “I have cancer” to “I had cancer?” You would think the moment treatment ends it’s all in the past and deserves the past tense verb. And for some that is their experience. It’s swift and certain. For me I felt the ultimate betrayal of my body. I had a very aggressive type of cancer with a very poor prognosis. So trust was very slow coming. And yet I had become convinced, in full faith, that I had been healed. I had seven cycles of very aggressive chemotherapies before surgery, and at the time of surgery (my Mt. Everest moment) there was no evidence of disease. Even still I came back down that mountain and did 35 radiation treatments, two more cycles of chemotherapy, and then eight months of monoclonal antibody infusions (Herceptin), all while there was no evidence of cancer left in my body. I was so convinced I had been healed I asked my oncologist to allow me to stop at eight months of Herceptin, short of the gold standard of twelve months. And in the nine months in between CT scans I went from being NED to having a baseball-sized tumor and several smaller tumors. So was I ever really healed? The answer to that, I believe, is both yes and no. But what does that mean for me now? Eight years of having no evidence of disease would seem to demonstrate “healing” or “cure” by any logical assumption. But am I? Would I trust enough to stop treatment- because if I am truly healed, I don’t need it anymore, and God knows how cytotoxic that crap is, even the oh-so-cleverly-targeted therapies (like Herceptin). Believe me, I feel every inch of the cytotoxicity, cumulatively, and I wonder what sort of suffering awaits me, as they simply don’t know enough about long-term consequences of these poisons. What would you do? Would you keep having treatment knowing your cancer can be lurking at an undetectable level, just waiting for the green light to explode like a wild fire? Or would you trust that eight years of having no evidence of disease is evidence enough to claim healing, and to stop treatment? I suppose many aspects come into the field of contemplating such a choice. The one thing that one cannot know unless they’ve walked the path of metastatic cancer and extended palliative care is the debilitating effects of the treatment, and the slow decay of the quality of life and overall health. Or how that presses in heavy in such a way that it becomes increasingly difficult to find pleasure or joy- how that in itself can become the battle.
The Bible tells us to find joy in our trials. But it doesn’t tell us how. And so the cliché answer is always just, “Praise God.” But I’m here to tell you that there is a rudimentary difference between saying “Praise God”, feeling grateful for the growth prompted by trials, and coming to fall in love with the pain, the suffering, the hard struggle as an aspect of the beauty of living as a human being. And very few people, very few, understand this- at least in the West. Because we live in a death-denying culture that turns away from pain and suffering, that tells us if we’re feeling these things there is something wrong with us, with our perspective, that tells us for every emotion there is an opposite, and one is desirable, while the other isn’t. So we learn to deny parts of ourselves as we’re encouraged to take on this cloak of fake joy. The real joy is in seeing the absolute, glistening beauty of tragedy as part of the human experience. And it isn’t something you will feel giddy about, or will have you laughing. Real joy will leave you speechless. It will leave you in awe. It will make you feel small, but incredibly brave and beautiful at the same time. I’ve tried the ‘fake it ‘til you make it’ approach, and came back around to it again. I’ve not been any good at it. And I really have to testify that it doesn’t work. Just be real. Please. I understand how one can get stuck and faking it seems like a quick out. But it doesn’t work. The only way out is through, and there’s just no faking that. The real joy of living comes through accepting all of it, not just living half a life. I say that as I continue to struggle to find joy.
Some of what Robert Moss calls “champagne” would be nice too. The champagne of experience is the mystery, the magic, the way we are communicated to from other realms in a very intelligent and personal way. Some call it synchronicity. Some just consider it coincidence. Sometimes it’s serendipitous. Sometimes it’s ominous. But these experiences, when we learn to read them, are a CPR for the soul, and I like that analogy because that’s what it feels like to me. These brief magic moments remind me I am not alone and that I am fully loved and supported in a tangible way. While we can easily say, “God loves us”, love is more than lip service- it requires an action, an observable and felt consequence. Some call this faith and believe that if you just trust, it’s all you need. And they would be quick to point out that faith is exactly that- what we can’t see. So we don’t need signs, we need faith, they would say. But as a child who has been abandoned by just about everybody I ever trusted, it’s not extraordinary that I would need to see the proof. Don’t just say you’re there for me- show me. And thankfully, that proof is increasing. I asked the Universe for a Blue Jay feather, and then I found one. I asked for a red Cardinal feather too. It’s coming. The red Cardinal has become a powerful messenger for me since moving to Texas. It’s appearance and timing has been magical, and I connect it with my mom. Confirmation of this came when my husband and I took my granddaughter to her first theater movie a few days ago- The Good Dinosaur. In the movie there is a red bird (not a Cardinal, but bright red nonetheless), and her name is Debbie (which is also my mom’s name). And dragonflies. There’s something about them too. They remind me of the mystery of death, the spiritual realm, and the bridges between. I made my mom a dragonfly pendant with apatite and silver metal clay and gave it to her for Mother’s Day, two years before she passed. It’s now back in my possession. I also made a dragonfly bracelet for my daughter, and gifted it with a note about the mystery of dragonfly. Although I had not identified dragonfly as a personal totem, I do feel something magical whenever I see a dragonfly, and the connection has only increased since my mom passed. In August I had a large, red dragonfly circle around me for over an hour as I sat outside the patio of our apartment. So when an intuitive friend recently prompted me to write about dragonfly, I knew there was a reason. At first I was unsure about what exactly I was being asked to write about. And then she said, “Dragonfly and damselfly want you to write about why they have two sets of wings.” That’s probably not the one thing about dragonfly medicine I would have chosen to write about. Yet contemplating has not surprisingly led to the direct application of the medicine in my life at this time. There are no coincidences.
Mostly what I want to write about this December 2015 is my relationship with my youngest son and all that entails. Because all of my family members are far more private than I am, out of respect for them I have largely left them out of my writing. That’s been painful for me at times, but necessary. Besides, it wouldn’t be fair to share about them when they have no opportunity to offer their own voices. But it’s time. I have held back long enough and now it’s time to crack it wide open and let it stand as it will. And I’m certain dragonfly has a message for many of us in this. Just stay with me as I weave it all together, hopefully in a beautiful tapestry that makes sense out of all of it.
Before I jump in I want to make a little disclaimer. I will be using terms like “autism” and “developmental delay” and “disability” and “retardation.” These are all terms used within a specific paradigm. I fully understand these are just terms, labels, and they do not even come close to describing the individuals who find themselves attached to the labels. I use the terms for ease of communication and understanding, but truly I am looking and speaking from my soul eyes, and in the spiritual realms the soul does not have any need for such labels. I also want to make it clear that as a mother of an adult son with autism I have come to fully believe that autism is not the disorder we’ve made it out to be, that autistic individuals are incredibly gifted, and we’re missing that by focusing so much on disability. I also identify with the camp that believes autists have incredible purpose, and are coming to help the rest of us neurotypicals make the necessary shift in human evolution while preparing the way for us. We are raising a new race of human beings. Of everything I have written, shared, revealed, this is by far the most profound and important (for me at this moment).
Telepathy is the language of autism, whether a person is verbal or non-verbal. You may not believe it, but I know this because I’ve lived with my autistic son for nearly 21 years, and I just know. If we had the time I could give you a thousand examples. Along with this comes a whole bunch of other ways of communication that don’t involve a verbal language. Empathic connection is one. My son often will assume my physical pain, not even consciously knowing I am in pain. I have on more than one occasion experienced my son coming to me energetically/astrally with “gifts of affliction”, I believe to solicit my empathic understanding of his experience. Some of these experiences have been intrusive and unwelcomed. I will share a more benign example. One day I was sitting in my meditation chair, eating a bowl of fresh cut strawberries. Suddenly I had the unusual experience of tasting and smelling the metal every time I put the fork to my mouth. This was followed by a very intrusive thought about what my son experiences every time he eats. Later, when I saw him, I asked him if he can taste the metal from the silverware when he eats. He grinned at me like a little kid who got caught getting into the cookie jar, and said, “Ya, how did you know? I hate it.” And so it is. I haven’t had an experience of tasting the metal in the silverware since. But it did help me to understand that for him everything is heightened, all his senses are hyper-attuned, and this can be overwhelming at times. So much so that he doesn’t really want to be in his body. It’s why he’s resistant to showering, and changing his clothes- the feeling of the fabric rubbing on his body grates on him.
But there are many more things I can share too. Some I am not sure I am ready to share. But I’m going to be pretty vulnerable here as it is because one thing in particular has absolute relevance to my own healing from cancer.
My son has suffered from severe seizures for over five years now. They began when he was 15 years old. When I say severe I mean like full clonic tonic, violently convulsive, with seeming complete loss of consciousness, or situational awareness (in a medical sense). I say this cautiously, because although he is unable to communicate verbally while in seizure, and does not respond to verbal command, he does seem to respond to certain stimulus at times. Some of his more prolonged seizures have lasted beyond four hours in duration, and twice now he has been hospitalized in the ICU with uncontrolled seizures. We have been to numerous neurologists, he’s had brain CTs, an MRI, and a few EEGs, which monitor brain wave patterns. The last two video EEGs he had resulted in strobe-induced seizure. And neither time did they record any rogue epileptic brain wave during seizure. The conclusion has consistently been that his seizures are “psychosomatic”, meaning the medical establishment believes he is causing them himself. The psychological theory is that extreme emotions have been repressed and are “converted” to a physical manifestation- sort of like a reverse, internalized poltergeist. They used to call this Conversion Disorder, but they have re-termed it Functional Neurological Disorder. The conundrum is that the medical hospitals do not know how to address a “psychological” problem, and the psychiatric hospitals are not equipped to manage the medical emergency that is presented when a seizure occurs. My son has been discharged from both psychiatric and neurological clinical care, both pointing us in the direction of the other to treat his condition. I can’t begin to describe how incredibly frustrating it is to have such a severe and even life threatening “symptom”, and to be told there’s no real physiological cause, when there clearly has to be some sort of physiological process. Over and over neurologists have made a distinction to us about “seizures that occur in the brain, and those that don’t”- even a Baylor neurologist in Houston. I’m no neuroscientist, but I’m pretty confidant that all seizures, no matter the type, have to occur in the brain. But because we can’t see the physiological pathway for it, we make a distinction between seizures we can see and those we can’t, as if the patient experiences the symptoms any differently. To the doctors the seizures are a behavioral symptom. And if we approach this logically, it’s hard to understand how a “psychological seizure” can be a medical emergency. I know my son does not like to share this aspect of his experience, for many obvious reasons. I have respected his privacy as much as I can while still seeking support for both of us. But after sheltering him for years, with only a handful of people having witnessed the seizures, I am now being compelled to share at least a small example of what the seizures are like, because it truly is the only way someone can grasp the fullness of our journey. (Please turn your speakers down).
Now, if you’re brave enough to have watched (I know how difficult it is- I live it), then you’re probably thinking the same thing I’ve thought a hundred times over: it’s physically impossible for someone to psychologically manifest this. And this isn’t even one of his most severe- this is after quite a bit of Versed and Ativan. When these seizures occur every muscle in his body is engaged. There’s just no way someone can consciously coordinate this level of involvement. And even on an subconscious level, it’s hard to fathom. The amount of energy required for his body to produce a seizure is incredible- like a raging tornado. And yet time and again the neurologists have maintained that because they cannot observe an epileptic wave spike in his brain, his seizures are a manifestation of his psychic crisis. Not being completely convinced of the psychosomatic nature of the seizures, I have been walking a line, one foot in the mine field of allopathic and naturopathic/homeopathic medicine, and one foot in the spiritual realm. This is the only true distinction I’ve found in explaining the seizures. You know, the shamans of our ancestors often manifested seizures during their astral travels to the spiritual realms. The Bible gives examples of at least one “demon possessed” child who suffered seizures, seemingly as a manifestation of his possession. So there’s long been a connection between spiritual states and seizure. But the correlation between autism and epilepsy is very high (20-40% as compared to 1% in the general population). And frontal lobe seizures occur very deep in the brain and can be much harder to detect by standard EEG leads. So the jury is still out on the underlying etiology of the seizures. But either way, the seizures are very real physical manifestations and thrust us into medical crisis sometimes with very little notice. (Out eating with his older brother and sister-in-law at the Taco Bell my husband works at on the weekends. His medication and EMT paraphernalia spread across the floor):
Believe me, no stone goes unturned. I was going full steam in barreling through the medical community to try to find an answer for my son’s seizures, until one day a couple years ago I happened to ask him what he experiences during seizure. I asked because I had observed several times that his eyes rapidly flutter, and/or move back and forth as if in REM sleep, and I was particularly curious about this, and his state of consciousness. He said that his experience was often like a dream- a recurring dream. I won’t share the specifics of that, but it’s rather telling, and raises a fear about what his intentions truly are. So I became more curious, and asked a lot of questions. The questions and answers both opened me up to possibilities I had not previously considered, and the more trustworthy I became with how I handled his answers, the more he shared his experiences with me. There are too many to share them all, and some extend far beyond the fringes of what many people are open to. But I do want to share the aspects of this that are relevant to me and my own journey with cancer, with healing, and with my faith and belief. But before we swim deeper into the rabbit hole, let me suggest:
The “narrow gate” is not the same thing as a narrow mind. I have encountered so many people in my life who are so fearful of missing the narrow gate that they close their mind to everything that they don’t believe belongs on the teeny tiny path they think is getting them there. But if the narrow gate is about faith, it would seem to me one would want a broader mind, because faith expresses itself in a myriad of ways, in and through everything around us. Faith is the complete absence of fear (oh ye of such little faith! If only you had the faith as small as a mustard seed you could move a mountain!). Over and over I have witnessed people sweep their fear under a rug by proclaiming, “God is in control”, as if to convince themselves of something. This isn’t necessarily faith. It can be an act of hiding fear under a guise of faith and externalizing the locus of control (as psychologists would say) in a way that actually lacks faith. It’s spiritual dodge ball of sorts. I mean, isn’t God in us? If God is in us, then we are God- or at the least aspects of as manifest instruments of his Love. Which means that when we shut out people (their experiences and beliefs) that don’t fit into the narrow path, we may actually be shutting out God. And that same God who we claim is in control may very well have sent those alternative experiences and ideas to grow our faith wider. It takes a lot more faith to remain open than it does to be closed. And when we say we have faith, sometimes we’re called to demonstrate by diving head first into a rabbit hole.
So it is exactly my son and his seizures, which were accompanied by increasing reports of peculiar neurological and psychic phenomena that was occurring outside of seizure (like persistent autoscopic hallucinations, seeing ‘shadow figures’, all sorts of intriguing creatures, orbs, and strange lights, increased lucidity in dream-like consciousness, out of body experiences, frequent episodes of dissociation, depersonalization, and derealization, even spontaneous ‘past life’ memory, and so much more), that rapidly began to open my mind to alternative explanations. Even though the terminology is biased towards a psychiatric symptomology, his symptoms are not classic psychiatric symptoms, which the psychiatrist consistently agreed with me about. Many of them are more consistent with a neurological etiology, with even the “autoscopic hallucinations” being in the same vein as out-of-body or near-death experiences. Yet neurobiology falls short, explaining only the mechanical aspects of brain function, and not offering any spiritual or emotional paradigm to make sense of the experiences. And to turn towards religion, with it’s heavy lean on demonic possession to explain our experiences, felt naive and unsupportive, especially knowing my son, who has the purist and most innocent heart of any 20 year old I have ever met. He already struggles with profound anxiety as he tries to make sense of all the information that comes at him. My goal was to not add to that in any way. So choosing to not follow along the narrow path paved by fear, I allowed my natural curiosity to guide me, willingly lead by my son, supporting him the best I could from underneath. The more I contemplated and meditated on the body/brain connection in terms of how it shapes our reality and the manifestation of this (even symptoms in the physical body), the more I began to question the very nature of all disease- even cancer. Today I believe that I gave myself cancer. I can’t point to every man, woman, and child who has cancer and claim they caused it themselves because it’s a hard truth and one that must be accepted in its time. It’s not for me to define truth for another. But I know for myself the missing piece in order to truly heal was in accepting that I had done this to myself. As long as I held on to my affliction as the ultimate totem of victimhood, even if it was a victimization perpetrated by a “loving God” to somehow manifest His mysterious purposes, I could not grow past it or heal it. And yet, there’s a purpose in it- it had to happen like this. There’s a reason I have lived twelve years with a very aggressive cancer. There’s a reason, even though I struggle with identifying purpose in the wake. My son has been a big part of awakening my consciousness to the power we all have to hurt ourselves, and to heal ourselves. Perhaps the most interesting thing is that he has not yet accepted that he has created his own seizures. He still fully believes (on the ego level) he has an undiagnosed epileptic condition and he is a victim of it. And he may be right- I have not given up entirely on the idea that he has a deep frontal lobe epilepsy. But at this point it would not change my understanding of the fundamental power of healing we all contain. He is undergoing NAET treatment now and through that we are finding much of his allergy and seizure is in fact caused from emotional imprinting. He has such an incredible amount of anxiety. If I hadn’t been open to mind/body modalities of healing I would think NAET is a quackery of medicine, as there isn’t any direct ingested treatment, and the applied therapy is quite esoteric in both theory and technique. The only “proof” it works is muscle testing (kinesiology) and decrease in symptoms. An interesting side note is that not only did my son have a seizure during Reiki attunement class, the NAET treatment is too strong for him to endure directly (he had a seizure the first treatment), and I am needed to act as a surrogate for him. What this means is that the DOM does the treatment on me while I place two fingers on my son, transferring the healing benefit of the treatment to him energetically, but buffered through me.
I recently had a conversation with my son in which he was lamenting that he doesn’t understand the purpose of his life and is growing tired of suffering (on so many levels). I can deeply relate. I find myself in much the same place. I asked him if he felt that his experiences with his seizures were making him a more understanding person towards people who are going through hard things, particularly physical ailments. He was quick to admit that it has made him more empathic. “So what if this is part of the purpose”, I rhetorically asked? I reminded him that powerful healers often get to be such because they have been deeply wounded. The initiation of the shaman almost always begins with some sort of physical affliction. And then I told him about how I believe he has helped me to heal my cancer through the manifestation of his seizures and the path we have walked together with the Western medical establishment and the lack of treatment or understanding. This seemed to make him feel better for the time. At least his suffering had a perceived purpose. (On a side note: my son wears numinosity like Linus wears his blanket. Just after I wrote this last line he came in from outside, where he was working on another wood walking stick he is creating. I would more call it a shaman’s staff. Anyway, I am certain he was outside pondering cutting into his precious branch he has already put a lot of time into, because when he walked in he announced to me, “It is cut forever.” We had no previous verbal conversation about him going outside to work on the staff, or even what exactly his intentions are with it. I have to work in a different way in communication with him, because there can be a lot of gaps. But after so many years of him teaching me, I can fill the gaps pretty quick. I knew exactly what he meant when he announced it, but coming so immediately after my last sentence about suffering having a purpose, his statement of “it” being “cut forever” was too synchronous to not solicit a giggle on my part. He played as if he had no clue, and asked why I was looking at him and what was funny. “Just you”, I told him, “You’re pretty amazing.” I then asked him if by his statement he was referring to his walking stick, just for confirmation. Yes. This is the language we speak almost exclusively.)
So the conversation my son and I had about his suffering and purpose illustrates an interesting aspect of the autism phenomena. Not only are many individuals who are labeled with autism incredibly open to the spiritual realms (because they exist in these incarnations half-in and half-out), when you look at the dynamic, they often come in teams. What I mean by this is that for every individual labeled autistic there is almost always a single caretaker/advocate who stands above all the rest, who is closer, more empathically attuned to the needs of the autist. This unique relationship lends itself to all sorts of speculation and analysis. And it does beg exploration of concepts like “soul mates”, “twin flames”, “split/twin souls”, and “soul contracts.” But in a less sentimental analysis, a characteristic term I’ve been hearing a lot lately has been “enmeshment.” It’s not a new term or concept. I came out of the Twelve Step groups about 20 years ago, so I know all about co-dependency, enmeshment, enabling, and unhealthy relationship patterns. That’s certainly a paradigm for some. And it’s viewed negatively, as some sign of pathology that needs fixing. But it’s interesting because if you really consider the newborn human, they do not have an ego identity. They spend the first several months of their lives in an enmeshed state of being- not knowing where they begin and the mother ends. Developmental psychologists study this forming of ego using “object permanence”, and theories such as Object Relations add to the understanding. So the ego state is not the state we are born into, even though it is the natural human state. Our ego, or sense of separate self, is something we are conditioned to, both through our basic biological make-up and development, and our familial, social, and cultural influences. But as the child develops and the sense of self becomes stronger, an individuation occurs in the parent-child relationship. When this doesn’t occur the relationship can be unhealthy and can damage all future relationships. And I know there are felt energetic consequences of these types of relationship imbalances- a type of energetic vampirism that can leave us drained. I certainly do feel this at times- exhausted. It’s not really much different than how a mother of an infant feels. I know my son is not an infant- he is a 20 year old adult. And I have identified and shared my knowledge about the path to healing, and the necessity for taking personal responsibility for it. I expect this from my son. But it requires a lot of discernment in making assessments about the duo of the individual with a developmental disability and the primary caregiver. It can be difficult to disentangle the two and understand the relationship as distinct from the usual parent-child relationship. I frequently recall a client I had when I worked at the Regional Center. She was 21 year old, not expected to live beyond her second birthday. She weighed about 25 pounds, with a nearly full-sized adult head, but the body the size of an infant’s. She had very small, deformed arms and legs. She only made infantile sounds, and occasionally responded to external stimuli with a small cry, a coo, or a quasi-giggle. She wore a diaper and was completely incontinent. She could slightly turn her head or wiggle her torso, but she could not crawl or even sit up on her own. She had profound retardation- in essence she was a newborn infant. For 21 years her mother was her primary caregiver, bathing her, diapering her, re-positioning her so she did not get pressure sores. I was in awe of this mother and her commitment. We obviously would not tell this mother she was enmeshed and her relationship with her child is unhealthy. But there is an inherent danger of the mother building her identity around being a caretaker of such a needy child, keeping her child alive for her own sake and not considering the suffering of her child. This is the fundamental narcissistic pathology of Munchausen by Proxy. But as with Terri Schiavo, where is the line drawn? It’s a convoluted issue with no easy answer. The mother to my client had managed to complete a college degree and had a well-paying career, so she was so much more than a caretaker to her severely disabled child. And so each individual must be taken as they are, and each caretaker must assess and re-assess their relationship, personal needs, and ability to continue to provide care. There can be no one-size-fits-all approach to it, and at the end of it all, we all do the best that we can. My son is obviously far from being in a “vegetative state.” He is intelligent and talented, and as independent as he can be, as many with autism are. So this invites deeper examination of the relationship between a parent and their adult child with developmental disabilities.
Because my son is 20 and not as independent as some neurotypicals- an issue complicated by the seizures- and because I am affected significantly, I have contemplated enmeshment a lot the past several months, and have had to reflect deeply while discerning what the dynamic between my son and myself truly is. This has led to me questioning the very notion of enmeshment and how it is and is not different from unconditional love, and why it is that we label this a pathology that mostly affects women in our culture. I very firmly believe that we are all the Hands of God, and that a mother’s unconditional and sacrificial love for her child mirrors who God is. So why do we so readily pathologize a woman who values her service in this role and defines her purpose by this? This is especially relevant to me because I still find myself unable to define my purpose, or what my role is in the greater community, standing in this post-cancer devastation. I’ve lost my career. My education is largely going to waste as I can’t apply it in any meaningful way. I’ve tried to go back to school and was unable to sustain that. I’ve tried various other things to bring purpose and financial resource to my family, and all have fizzled out for one reason or another. And so, what is my purpose? And I’ve heard myself say my purpose is my family, to help them heal, to lead them, to support them. And in that can come judgement, both self-imposed and external, about what that means, and whether that is even sufficient as a statement of who I am. So in a sense, maybe because I am grasping for purpose, my nakedness about all of this becomes the larger purpose- to give voice to not just my own experience, but perhaps the experience of others who can relate, and to guide the rest in opening up to possibilities they may not have even imagined, as it relates to how parents of special needs adults make sense of their roles.
In my earnest desire to have clarity on the nature of my relationship with my son I have come to a few conclusions. First of all, I do lack self love and have been in a lifetime struggle with learning how to take care of myself. This stems from deep and old wounds, and has been fundamental to my development of cancer. I know that putting other’s needs before one’s own is a classic sign of co-dependency, and likely results in enmeshment. But the problem with defining it solely on those terms is that it ignores the lack of ego boundaries that characterizes enmeshment. I believe I have a very clear and strong sense of who I am as distinct from others, and I can easily identify my own problems and when another’s problems are not my own. My feelings are not tied to my son’s in a way that I am unable to distinguish his experience from my own. That’s not to say I am completely unaffected by him- no one lives in isolation and we are all responding and reacting to one another. Every mother with a child with autism will tell you that if their child is having a rough day, the mother will have a rough day too, because rough can mean tantrums, complete emotional meltdowns, violence, and in our situation, seizures. His seizures demand my full attention and the demands are overwhelming at times. But my sense of identity is not tied up exclusively in my son. And I think all mothers come to see their identity as mothers, at least in part. And all mothers of children with special needs (I think “extended needs” is a less stigmatizing term for adults) come to see their identities as caretakers and advocates for their special needs children. But this is just an aspect of who I am- not the totality.
About the time my son started having his seizures it became crystal clear to me that he is unusually reactive. I couldn’t see it as much in his relationships with family, perhaps because of the proximity. But as he was coming into his adolescence and seeking relationships with peers, his sensitivity became overwhelming and his empathic connection so strong that he couldn’t differentiate who he was from who his friends were, or who he was from who they said he was. Any negative perspective of another became internalized and acted out in self-injurious behaviors. Whereas those with strong egos employ defenses that project their ego outwards, he brought everything inward and turned it on himself in a very immediate way. Over and over I would hear myself trying to explain to my son’s psychologist what I was observing/perceiving, but I never felt it was truly understood. My son had become a mirror for all the ego projections of those around him, but was unable to see himself as distinct from the reflection, and was sinking into depression and suicidal wishes. I had to tear him away from all those sources of negativity, and begin to build up his ego, step by step. I’m not sure if he will ever have strong ego boundaries, or if I am supposed to even want that for him anymore, as there is a certain way it serves to make us better people. While he has gotten stronger, more defined, he still struggles with this and it’s painful to realize. When I observe it the clearest is when I am having a bad day. If I am tearful or irritated he immediately senses it, and if I don’t walk a careful path with it, he will inevitably have a seizure. But I am strongly encouraging him in the arts, and he is enjoying painting, wood working (he’s an incredible wood carver), drawing, and song writing.
In truth, only my son gets to define himself, and gets to adopt the labels of “disabled” or “autistic”, if he chooses. But the labels do qualify him for supportive services, which become much harder to access now that he is an adult, and are nearly non-existant in Texas. I’ve been trying for two years now to get him services through the Department of Rehabilitation, as he really wants to work (money is a huge motivator!). But the job coach they paired him with had a lot of negative overtones- telling my son what he was doing wrong, what he needed to change, what his limitations are, etc. And then they made such a big issue out of him having seizures that they were offering little hope of him maintaining employment. It’s not surprising that when I took him to DOR for case planning with his job coach and rehabilitation specialist he ended up having a severe seizure. That moved any doubts they were having into absolute certainty about his unemployability. But they don’t understand what I have come to understand- my son is like a sponge. Whatever others put out energetically he will absorb and manifest. Over the years there have been many traditionally modeled programs and services I have had to back him away from (including the public educational system) because even though they have claimed to offer opportunities to individuals with autism, they were inflexible in understanding and approach. You can’t fit a square peg into a round hole and expect the peg will conform and come out perfectly round. And even among those who claim to offer strengths-based approaches, they still set him up for failure as the end goals were not truly compatible with who he is as a unique individual with a very different way of thinking, communicating, and being. So while I sometimes feel desperately in need of programs and services to provide me relief and support, my experience has been time and again that pursuing these programs and services have set my son back, adding to the growing list of “failures”, which he then internalizes. But the failures truly aren’t his- they are failures of our society to embrace autists, to see the unique and beautiful contribution my son came to offer us. He truly did come to serve us- all of us.
I’ll tell you though- it’s getting old. I’m getting tired. Twelve years of cancer treatment have not helped me. I’m the one on the floor with him, trying to keep his 200lb, 6’ tall body safe. I try to catch him when he goes down, but I can’t always manage it. I’m the one up all night, alone, next to his hospital bed, advocating for him. I’m the one who lives with a constant hyper-vigilance– frequent cues triggering an overwhelming adrenal response in my body as I anticipate yet another seizure. Research shows that mothers of children with autism suffer with more depression, anxiety, and physical ailments. We both wonder what it would be like for him if I die before him. I find myself constantly advocating for him in ways I never had to for my older adult children. And I’m sure some of the service providers have looked at me and judged me to be over-protective, out of touch, and even excusing behaviors that they believed were intentional or that my son could control. I am certain I have been judged to be one of those parents that deflected personal responsibility by asking for accountability from service providers, and that I have come across to them as enmeshed, co-dependent. I recently overheard myself stating that “I’ve worked really hard at helping him develop an identity.” *I* have worked hard. It sounds like enmeshment. But is it? Isn’t this what all parents do- guide and support their children in developing who they are? We recently watched a biographical expose on Lewis Hamilton, the first black and youngest Formula 1 champion. He had such a passion for racing as a child that his father learned everything he could about it so that he could guide his son to be the best at it. And while he was his son’s manager for a time, he bowed out when it was time, and allowed his son the independence he required to grow. I think all parents bend to support their children. But the point is, they support their children in developing who they are as unique individuals. Sometimes this process is slower for parents of children with developmental disabilities. It’s just that parenting a child with a developmental disability requires a lot more support, and guiding, and sometimes even pushing, because they exist in a world that tells them they aren’t good enough, that in order to be valuable they have to make themselves round, that they are different in all the wrong ways.
So if parenting an adult child with a developmental disability requires active parenting longer term and with more “hands on” than parenting children that go the typical route into adulthood, how is it distinguished from enmeshment? In all my pondering one of the things I walked away with is a clear understanding that enmeshment happens when we can’t take anything away- don’t get anything in return. As I alluded to earlier, it’s a type of energetic vampirism. My son is enmeshed. For whatever reason, right or wrong, good or bad, this seems to be the way he leans- a trait of autism. I’m doing all I know how to help him build stronger ego boundaries and a clearer positive sense of himself and his place in the world. But do both people in a relationship have to be enmeshed when one clearly is? Is it a both or none dynamic? One of the things I learned several years ago is that victimhood is a state of mind. One can only be a victim if one chooses to view an experience in that paradigm. Something cannot be stolen from me if I freely give it. And I cannot be “taken advantage of” if I am not allowing another to have advantage over me. And so even in relationships where a vampirism is occurring, the person allowing the other to suck the life out of them is ultimately the one responsible for this. My lack of self-love is my problem, and not my son’s. It’s the part of the equation I am responsible for. But that in itself does not equal enmeshment. I am not drained out and left empty-handed, nor am I martyring myself for the sake of my son (at least I don’t think I am). The “gifts” are there for the taking. Always. But sometimes, as illustrated in Paulo Coelho’s The Alchemist, we have to journey to uncover the treasure, because the journey itself is the biggest part of the story. This is the part I’m ready to share, not just in terms of parenting a child (now adult) with a different way of being, but also in terms of how he helped me to open myself up, and the interesting twist in the road that has resulted. He is dependent on me in many ways. But he’s lead me in some ways too. I am often saying that I can’t keep up with him because in many ways he far exceeds me. What I mean by this is he excels in all the ways we would call “spiritual gifts”, because we have no other category for the esoteric nature if it. Science is catching up, but rather slowly- much too slow for this new race of humans we are raising up.
So although I am a weary traveler, have moments of utter exhaustion, and wonder if I can take one more step, I also know I have gained invaluable wisdom and that this is what both my son and I, as a team, have come here for, at least in part- to share the journey so that others can also open to the possibilities in their own lives and relationships. We are so much more than we know.
And so it is with dragonfly. While dragonfly has two sets of wings, his wings are not the same shape and size. They are different, and operate independently, but for the mutual effect for the single organism. They allow him to be agile, quick, and efficient.
For a long time researchers thought that the double set of wings that dragonflies and damselflies have made them less efficient. Study after study they found that one set of wings produced drag, making the second set less productive. But with persistence they found the sweet spot- when both sets of wings work together in unison, independent, but supporting one another, the dragonfly and damselfly are much more agile and efficient fliers than their single pair winged relatives.
It’s clear how I support my son. And in case it’s not clear how my adult son supports me, let me make it clear:
My son has taught me to heal- not how to be a healer, because that’s already what I am, but how to heal myself through relationship with my body. He’s also taught me the fundamental mechanism of healing is not the healer, but the self. He taught me that in essence all healing is self-healing. And he also taught me that many ailments are ultimately created by the self- from seizures to allergies. He’s taught me to be conscious of what I put out energetically, and how energetic intentions affect people in measurable ways. He taught me to be in the moment, as that’s all we have. I used to get so frustrated with him because everything that is happening is happening now. If I respond to something that happened five minutes ago he will sharply remind me that that was five minutes ago, as if he has already moved on. Now I just respond with a smile, and remind him of how amazing he is. He taught me to have the heart of a child, to have wonder and curiosity, and to fearlessly explore our natural world. He thrives outdoors and uses the outdoor environment to self-heal and ground himself. This is something we all need and we can easily forget in our hectic and increasingly urbanized communities. He’s taught me that social constructs are just illusions and not what matters in this life. He’s taught me to let go of constructs that didn’t serve me and to question the status quo. I already had a rebellious spirit, but as a parent there is a certain amount of conformity you want to have so that your children fit in and are socialized. And I’ve had to let go of all of that and just allow him to lead me in the ways I can be supportive of him, despite what people think- even the so-called “experts” and service providers. He’s taught me to accept all people. Unlike the stereotype of people with autism being withdrawn and antisocial, my son is exceptionally social and seeks social interaction. He is not intimidated by anyone, and will talk to small children as well as elderly people. He doesn’t have a strong sense of social rules, so he has no inhibitions in telling people what he thinks, or asking them personal questions about themselves. So there’s a realness to him that isn’t buried behind a mask of social appropriateness. This has caused him tremendous confusion and pain as his motives have been questioned or people have lashed out, feeling threatened by his intrusion. But it hasn’t changed him. He’s taught me to listen- really listen. To listen with my eyes, my skin, my heart, my gut, with my whole body. He’s taught me to be open to magic, to explore possibility and alternatives, and to let go of fear. So in a very true sense he has expanded my faith by calling me out onto limb after limb. And acting like a mirror, he’s revealed to me my need to center, ground, balance, and work on self-love, to take care of myself.
Dragonfly’s wings are powerful, strong, steady. But this is where dragonfly and damselfly differ: when dragonfly is at rest his wings remain perpendicular to his body. When damselfly is at rest her much smaller same-shaped wings are above her slender body, and folded in. This is the easiest way to tell them apart. Dragonfly is a flier. He does not like to rest much. Damselfly is a percher. She rests often. Both offer contemplation in which medicine is suited to our own situations.
But when we contemplate even further into the nature of both dragonfly and damselfly we can apply the medicine even more specifically. Dragonflies are ancient, having been around since even before the dinosaurs roamed the Earth. And the life cycle of the dragonfly holds wisdom. The mother lays eggs on a leaf in the water, or into the water itself. After the egg hatches the nymph can live under the water for up to four years, where it is an unforgiving hunter. The longest part of the dragonfly life cycle is spent under water. The nymph crawls to land from the watery depths, molts, and then emerges the adult dragonfly. The adult only lives a few months. So we see that dragonfly is comfortable and exists in all areas- water, land, and air. Water is a very important Earth substance and is essential to our bodies. Our own fetal development occurred in a watery environment. Water can represent reflection, motion, emotional depth, life source, intuition, and the spiritual realm. In native traditions the Earth is viewed as a stabilizing force, like a mother- she provides a sense of belonging, a connection, and she accommodates and contains all other elements. And the air- Native Americans think of air as wind, and believe that wind is sacred, carrying the voices of all Spirit. If you’re familiar with Tibetan Buddhist prayer flags, then you know it is the wind which carries the frayed threads (the prayers) off to spread goodwill to all. So wind is seen in many beliefs as the Divine Messenger, only to be interpreted by shamans, healers, and tribal elders. Native American beliefs also hold that dragonfly eats from the wind itself. He is a powerful ally for us in the spiritual realms. But dragonfly is comfortable in all realms- the watery depths of emotional and spiritual alchemy, the Earthen landscape of purpose and connection, and the sacred, ethereal place of communication with the spiritual realms beyond this Earth plane. And he has two sets of wings so that he can be agile, efficient, and powerful in his purpose and self-preservation.
I am profoundly thankful for my friend who put the bug in my ear about dragonfly and even specifically to direct my contemplations on why he has two sets of wings. Contemplating dragonfly, I can relate. His many eyes, reflecting- I thrive on gaining perspective from all angles, on all levels (or realms). His unresting, delicately veined, membranous wings of differing sizes. He reflects so much of me in his character, behaviors, life cycle, and physicality. And I can see how this medicine applies to all of us on some level, but he especially resonates with my own path in this life, particularly as it relates to my son. I can clearly see that dragonfly is a powerful totem for twin/split souls, with the stout and efficient use of two sets of wings. I intend to further contemplate the mechanics of flight and the ways dragonfly teaches me to become more efficient in my purpose, in our purpose- to harness the “tornado energy” so we can find the rhythm and truly take flight. I can also see the mystery unfolding, revealing purpose in much more profound ways when I apply dragonfly medicine. But perhaps for me the most synchronous aspect of contemplating dragonfly medicine at this specific time is his relationship to snake. Snake medicine has been one of the more profound I have been working with over the past several years- even long before I knew to identify it as that. I am still working with snake. Whereas dragonfly is a medicine of relationship and co-creating (at least for me now), snake is a personal medicine, there to assist with how I relate to myself and my process of growth. An old American folklore calls dragonfly “snake doctor”, or “snake pilot.” Lore around this identifies the dragonfly as being a constant companion to the snake, so much so that if the snake is injured, the darning needle (dragonfly) will sew the snake’s mutilated body back together. In relationship to snake, dragonfly is a healing force, a trusted companion, and even a guide. I really can’t even grasp at words to put this into a psychological, emotional, or spiritual paradigm that would have the connection make sense enough to share. From my experience this is what makes the animal medicines so profound- they have to be experienced, not discussed.
And so this is how relevant my son and my journey with him is to my cancer experience, and particularly, healing from cancer. But even though he has taught me so much about healing, about how to be a better self-healer, I still find myself with the basic dilemma of how to get from I “have” to I “had.” All great acts of faith require a leap into the unknown. But the problem is, as I’ve already shared, I’m currently in NED (no evidence of disease) status. In the medical sense this doesn’t mean I’m cured. I’ve been NED before and not long after treatment stopped, the cancer progressed. And cancer is a bit like a bacteria- once exposed to an antibiotic, if the antibiotic does not completely destroy the bacteria, it will grow a resistance to the antibiotic, and reproduce faster and stronger than before it had been exposed. Cancer can grow resistant to the chemotherapy drugs, and especially after prolonged exposure. Is this a chance I want to take? I have met a handful of women online who have been NED for six, eight, even ten years, maintained on Herceptin, who had prolific cancer progression in just weeks, after years of being NED. This is even scarier when you consider that the longer you are NED, the more lax the oncology team becomes in looking for signs of progression. I get CT scans once a year, and always with a fight. PET scans are even harder to get, but will show certain types of metastasis (like stomach, lymph node, etc.) better. My tumor markers have never been elevated, even with stage IV cancer, so those aren’t necessarily a good predictor. Maybe cancer in my bones will equate to elevated blood calcium levels, or cancer in my liver with elevated liver enzymes? Or maybe neurological symptoms will lead to a brain MRI that shows tumor in my brain (which I am at an exceptionally high risk for because I am HER2+, and because I had cancer in the lymph nodes that drain the head). But by then it could be so aggressive and prolific that it will claim my life before I ever get a leg-up on fighting it.
Believe me, in the twelve years of survivorship I have heard just about everything under the sun suggested as a cure for cancer. The most widely accepted and known at the moment is THC or CBD (marijuana/hash) oil. I’ve never been opposed to alternative and more natural treatments. But the thing is, the cancer I have is highly aggressive. It’s not something that affords the luxury of patience in trying out different treatments and allowing time to change tracks, if that’s what appears necessary. I knew early on I had to choose one road or another and not to straddle both. The week I started chemo back in 2003 I stopped all supplementation intended to treat my cancer and focused on using naturopathic treatments to support my treatment and address side effects. That approach has worked for me. And here I am. So how can I claim healing and yet remain in treatment? This is a tough question to ask myself when I’ve told my son that it is because of him I believe I have learned how to self-heal. Do I put my money where my mouth is? I’d not be honest if I didn’t share that it’s terrifying to consider stopping treatment, especially since I did have disease progression after I was so certain before that I had been healed. My doctors aren’t suggesting I stop. Maybe being a cancer patient is just part of my identity now, and I don’t know how to let that go? Or maybe it’s just a thorn in my side that I’m supposed to maintain for remembrance sake? And maybe I will get to that point of saying enough is enough. I am exhausted. But I don’t think some people understand that this isn’t a matter of which treatment, or whether to continue with the Herceptin, or stop it and start on CBD oil. Either way it’s the same dilemma- I am NED and have no way, other than cancer progression, to measure effectiveness. When you’re at the bottom, the only way to go is up. When you’re at the top, the only way to go is down.
And so I carry on, doing the best I can. I believe I am still in a healing process, and yet at the same time I am slowly accepting that healing is done, it is mine. I no longer need to hold on to an identity of healing, or being a healer for that matter. But in the practical grit of 3d material life, we are in a very tough situation. I am not physically well. I am emotionally struggling too. I am feeling alone, isolated, unsupported, abandoned. I am questioning my purpose, and am not finding solid ground. Everything hurts right now, both physically and emotionally. And the exhaustion continues. While I can embrace all the wonder, and beauty, and excitement in discovery and unfolding of all the gifts my son came to share with us, these special humans started showing up in higher numbers around the 90’s, so my son and I are very much on the frontlines with shoring up the path for him amidst this unaccommodating and resistant world. We are pioneering the way for all those who came after, much in the same ways I am pioneering the way for other people with metastatic disease who are straddling the line between palliative care and chronic disease management. In the 3d life we are very much in the trenches, emergency room visit by emergency room visit, and chemotherapy infusion by chemotherapy infusion. It’s lonely, and hard, but important. And I want to say that all of this is part of the purpose, because, how can it not be? If the purpose isn’t inherent, we have to make it ourselves, or everything is futile and meaningless. And I do struggle with this too, because for me so much is tied into how we are able to meet our practical needs. We’re not doing so great at that. With the loss of my SunLife long term disability claim income and so much medical need between my son and I, with my older son and daughter-in-law moving out and no longer contributing financially to the household, we’re sinking. My husband has been working for a year at a second job, leaving him no days off. This also leaves him less available to help me with our son, or to help with things around the house. Sometimes I lose sight of how cancer has affected everyone in my household, especially my husband and our relationship. He has been amazingly supportive, and is working so hard, but his absence puts a lot more responsibility on me, which takes away from my ability to take care of myself. We’re balancing everything as well as we can, but it’s not easy. And my husband can’t work any more hours than he is, so I’ve had to consider going back to work, and have even applied for a few social work jobs. I don’t think I can manage such a demanding job, which adds to my negative feelings about myself. What can I do, and can I even manage a job at all with so much responsibility already on me, and my growing health problems? My basic needs are being met, but there’s been a lot of loss and grief in letting go of expectations I held when I was a motivated career professional, and we were a two income household. The financial devastation has been real. We have let go of so much.
So someone took notice of our plight, and she nominated us for this year’s Austin American Statesmen Season of Caring. Each year the local newspaper highlights twelve families and their sponsoring non-profit agencies, and asks the community for support in meeting the families’ needs. We were nominated by The Breast Cancer Resource Center, and selected by the newspaper to be one of the families. I am very excited to share the news, but at the same time I am ambivalent about how to feel about it. It comes on the heels of my intentional focus with manifesting and exploring my relationship with material need and resource. So a part of me feels confidant and thankful beyond words for the opportunity (and synchronous timing). Another part of me feels undeserving and sees people with such greater need than ours. Not just material need, but even my sister metastatic survivors- so many are so much sicker and are enduring grueling treatments as I coast along on Herceptin. This stirs up deep, old wounds that expose how I feel about myself and my worthiness. We have had to open our home and our hearts in a way that leaves us very vulnerable, and sharing our story in a broader public eye can invite criticism and attack. But I’m grateful for the opportunity to work through this emotionally too. Even if we don’t see any financial benefit at all, the two priceless things to come out of it are the opportunity to work through all the things this brings up for us emotionally (because I know it will solicit growth and we will come out better for it), and to share our story so that people can get a closer view of what it’s like to live being a young mother in long-term treatment for metastatic cancer, and to care for an adult child who has intense needs, while also trying to support my other adult children who also have extended needs. I know we’re not the only family to deal with these issues. And what has happened to us can happen to any American family. So I hope our story can solicit empathy for all people who are struggling, and that people realize cancer can happen to educated, young, middle class mothers too. But believe it or not, as open and vulnerable as I often am in my widening circle, it’s taken a lot of courage for me to open up to an entire city the size of Austin. I just hope people can see. Really see. Dozens of hours of video gets condensed to a few minutes, highlighting the things that seem most important about a story, but those few minutes can never tell the whole story. And so I’m going to keep sharing my voice through writing. I just hope this is part of the purpose. Well, I know it is. It has to be. I hope that I get to see some of the fruits of it while I’m still here.
*By the way, if you didn’t already know, I am stuck on editing All Paths Lead Home, but did start on writing my second manuscript, A Numinous Way of Being, which is a fictional story based on my own path with loving someone with autism. If this has moved you in any way, I appreciate your encouragement and support as I work to write a story worthy of publication, with the intention of awakening readers to the gifts of autism.