The Last Great Wheelchair Race

I can’t believe today is chemo day again! This ongoing obligation to infuse my body with a chemical that turns off my cancer cells every 3 weeks reduces my life to 3 week increments. Before I know it the time has passed and it’s time for another infusion. It just seems to make time go faster, and boxes me in so that life is lived around that magical number of three. But I’m not complaining. Really.

It’s been a good while since I harnessed the resources to add something to this living chronicle of my journey with cancer. In fact, it’s been nearly 4 years, which seems inconceivable to me. I last wrote on my birthday, and in a few days I will pass another birthday- my 47th year in this body, in this life. I’ve started and not finished several writings in the past 4 years since I last wrote. I’m not sure why I’ve been unable to finish and post these. I wonder if a part of it is the desire nearly all cancer patients have to move on from their diagnosis? Even though I continue to have treatment (chemotherapy) every 3 weeks, it’s so much my usual now that I can’t even call it the ‘new normal.’ I vaguely remember my life prior to cancer treatment. And strangely many of the people who’ve come into my life within the past 5 years don’t even know I am still doing chemotherapy every 3 weeks, and some don’t even know I had/have cancer at all!

In August 2019 it was 13 years since my metastatic recurrence, and the previous May was 16 years since my initial diagnosis. That’s an incredibly long time to be surviving after a terminal diagnosis, and the number of us still in cancer treatment after 16 years is unbelievably small. What that continues to mean for me is that I am forging a path with very little support or encouragement from others who have gone before me, because 99% of them have died. Actually, there aren’t any longer-term metastatic survivors in my life, which makes me very much alone in this journey. I still have not entirely resolved whether I “had” or “have” cancer and whether treatment is truly an option at this point, or if my life is still depending on it. Even my oncologists do not know, as there is no research to inform an opinion and they have no other patients like me from which to even grasp anecdotal evidence for a recommendation. So it’s left up to me. Maybe I have been cured, and maybe I can stop treatment. But maybe not. It’s a roll of the dice, and what should I do?

There’s so much more that goes into a decision like that than most people can imagine. It’s not as simple as, ‘well, I’ve been cancer-free as far as we know since 2007 and this treatment has a lot of side effects, so let’s just quit and see what happens.’ My oncologist stopped ordering scans over 2 years ago because he said they’ve been clear so long now that there isn’t a need to continually expose myself to the radiation. I appreciate that. It’s not just the radiation exposure, but it’s the intense anxiety the scans solicit. I’ve written about this before, but one thing a cancer diagnosis and treatment has done is composited onto a pre-existing PTSD condition from past traumas. The medical trauma, particularly around scans and surgeries, has been pretty profound and has left me with a claustrophobia that I can usually side-step, but in certain circumstances I cannot. Having scans is one of those times I cannot. So I appreciate no longer having to endure those challenges. In the span of treatment I’ve likely had well over 30 CT and PET scans. This isn’t accounting for MRIs, DEXA scans, echocardiograms (which I still do every 3 months), and all the other obscure imaging tests and whatnot I’ve had to go through. But the ones where you have to lay completely still inside the small tubes for long periods of time are definitely the hardest. Not having scans does create another problem- we don’t know for certain if the cancer is present, and won’t know until there are profound symptoms of tumor growth. Even with my metastatic recurrence, with cancer in various locations throughout my body, my tumor markers (measured through blood) weren’t high. In fact, the only diagnostic tool that found my recurrence was a CT scan, and by then I had multiple tumors, one as large as 8cm. I had no symptoms. My cancer is highly aggressive. I know I keep stating this and it might sound like a broken record to some who are consistently reading, but there are a whole lot of people who have come into my life in the past decade who have no idea. This compels me to keep explaining. So this not having scans business is dicey too because of my unique cancer history. But for now I am willing to gamble it. I refuse to live in the shadow of fear of dying. But I have to balance that with prudence and respect for the nature of the dis-ease too.  We’re more fragile than we think we are. 

I imagine one who hasn’t been through such an experience would assume this a joyous and blessed position to be in. To survive the unsurvivable is a miracle. To have a choice whether to continue with treatments or be able to stop is a privilege nearly no one with metastatic cancer gets to experience, especially if it’s a recurrence of disease. They told me when I recurred I would be in treatment the rest of my life, no matter how long that life would be. But I think they had no idea it would be 13 years later and that I would ever be in a position of not having evidence of disease again.

Cancer has been my biggest blessing and given me so many gifts. So profound and life-changing, it’s beyond words. But cancer has also been my biggest challenge and stripped me of everything. Everything. And left charred remains in its’ wake. So profound and life-changing, it’s beyond words.

But I attempt to share what I can, to get it out into some kind of cohesive understanding. And I choose to share the uglier side (depending on your perspective), the struggle, for three profound reasons. One, to cathart and gain clarity, like gazing into a mirror of my own words. Two, to chronicle my journey through snapshots of moments along the path for my children and grandchildren, and maybe even great-grandchildren. It’s a way to make myself more than just a name on the family tree, and hopefully paves the way for a legacy and can offer insight into how to survive the tragedies and losses as we traverse this Valley of the Shadow of Death. I know my writings are long and the culture I am now in doesn’t tolerate such things. So these words may likely be lost to an inpatient generation. But I offer them publicly none-the-less- just in case we start to forget we’re human. I sure would treasure these kinds of offerings left by my ancestors. And finally, because the pink-washing campaign has made breast cancer all about rah-rah rallying and cute slogans, and our culture guilts and shames cancer survivors if they’re not putting on their best face. It seems these days our culture shames anyone who is struggling with anything. Even women from my own cancer clan can at times project envy on me because I have been given a miracle. I just want others who may be going through the struggle to know they’re not alone. This shit is monumentally hard.

When I share that cancer has stripped me of everything and left charred remains in its’ wake I mean that on every level. It’s taken from me physically, mentally, spiritually, psychologically. I know I’ve written fairly extensively about that, and have also restrained a lot too. But there’s a depth to it that can be really hard to articulate and I haven’t usually gone into those depths, especially the more intimate ones with my role as mother, wife, and daughter and how cancer has permeated those relationships.

I haven’t written about the time my mother…… There were so many moments like that. I haven’t written about how I’ve been accused of using cancer as a “trump card”, or how sometimes it feels like I’m in competition over who has the most physical disability, fatigue, or pain. I always draw the short straw on that one. I haven’t written about how I’ve been accused of talking about my cancer to ‘make people feel bad’, or how I feel the pressures of other survivors and their expectation that because I have survived I owe something to the others. I haven’t written about how many people in the larger spiritual community have judged or blamed me, using my cancer against me as evidence that I’m not as spiritually evolved as them. I haven’t written about that time I was sharing with someone I loved and respected that my own childhood abandonment issues were deeply triggered and I was told that my fear of abandoning my children to death showed my lack of faith, and if I was to die it was because that is God’s will for their own salvation, because after all, He loves them. I haven’t written about how my cancer anniversary (which is like a birthday to me) comes and goes and no one but me acknowledges it, or how unimportant it seems to others to really celebrate my life or honor all I have endured to try to keep living. I haven’t written about how it’s been years since I’ve been going to chemotherapy alone more times than not. I haven’t written about how every relationship I have has changed because of cancer, in some ways for the positive, and in some ways not. Most everyone seems to only process my cancer and healing in terms of how it affects them, how it’s impacted their life, or made them feel. And I’ve only half-way written about how tired I am. Exhausted. Bone tired. Heart tired. In moments giving-up tired. Thank God those are fleeting.

Really this past 4 years since I last offered an entry into this journal have been amazing, and much more so than I realized before I took a moment to look back. A lot has happened. At the time I last wrote I was involved as a student with dream shaman Robert Moss and I had taken some workshops through the Foundation for Shamanic Studies. Finding my feet on the ‘technical’ shamanic path was in large part a direct consequence of the healing work that metastatic cancer demanded of me. But, if you knew me pre-cancer, and especially if you knew me in my professional endeavors, then you know how passionate I was about my job as an advocate for developmentally challenged people and their families. I was often specifically requested by families to be their case manager because I brought a fierce commitment, high level of integrity, a warm and healing presence, and I carried them well. I loved my people and treated them with dignity and respect. I valued what they offered. And I made good on my promises. You know when I was a foster care social worker I was equally passionate and adored by the families I served. My reputation was solid and preceded me in the community. You also know I was equally passionate about my volunteer endeavors, and wrote and published a book about domestic violence from a Scriptural perspective, sat on the Domestic Violence Advisory Council, and was Chair of the faith committee. I started a non-profit organization, developed a Bible study for families struggling with abusive behaviors, and facilitated a group for women in abusive relationships. I managed all this while raising three children, and we still found time on the weekends to go camping, enjoyed many day trips to the beach, the mountains, the lakes, the trees. We hiked. We played in the water. My husband proposed to me for the third time at the bridge on the hike up/down to the top of Vernal Falls in Yosemite. That time I finally said ‘yes.’ I remember hiking up there the first time with the kids, my youngest just being 3 years old, and thinking there was no way he would make it to the top, especially getting up the last stretch, which is steep stair steps. He completely shocked me and not only made it all the way up, but all the way back down too. It was rigorous for my much thinner and younger body. But this was normal life before cancer. We were active.

The first thing that went was my non-profit organization and all the volunteer things I was doing in that vein outside of my salaried career. The second thing that went was my overall health as my body began to succumb to the toxicity of the chemotherapy. And then I got the blood clots from my portacath, and nearly died (October 2003). Less than a month later I lost both of my breasts to surgery. Within that same year of hard treatment we also stopped our weekend family outings. It was all I could do to get through the treatments and continue working full-time, and I was also now on blood thinning medication because of the clots, which made me at risk if I had any falls or injuries. The chemotherapy, over time, had significant effect on my cognitive abilities, including my spatial awareness. So hiking was off the table. My confidence in my body was completely eroded, and I become increasingly afraid of death. My faith also started to slowly decay as people from the church we attended at the time (where we were also home group leaders) didn’t step up to help us get through this Job-like destruction. Life got smaller, more condensed. I was no longer the wide-eyed 30 year old looking forward to the unlimited potentiality that life held, but was reduced to living life one step in front of the other, not a hair on my body, holding myself up by the walls as I made the trek down the hall from my office to my mail/inbox, trying not to vomit.

And then, just when I started to see a glimmer of hope that maybe I wasn’t going to die after all, I had metastatic recurrence. In a single day I lost more than I could ever put into words. So much more than breasts and career dreams and future hopes and health. It went vastly deeper, the loss. But the materialization of all that went like this: I had to quit my full-time job to go back into cancer treatment. I knew I was likely going to die and I didn’t want to spend my last days on earth at work. Besides, working all through the first two years of treatment is not something I’d wish on anyone. I barely made it through that, as it took everything I had physically and mentally. I still cry thinking about what an assault that was to my soul. Along with this job loss came loss of insurance and loss of income. Sure, I applied for Social Security Disability and also made a claim with my employer-provided long-term disability insurance. I didn’t think I’d live the two years to even see the Medicare kick in. This was in 2006. That is the year I also lost both ovaries and my uterus, and my hair again for the 4th time. I was 33 years old and had already been in chemotherapy-induced menopause since I was thirty. Eventually the financial transition evened out and we got used to living off the less income, although we did have to file bankruptcy, so we lost our credit too. But the loss of my career, which was such a huge part of my identity and sense of self, was a bitter pill to swallow, especially with each passing day in which it became more evident I might actually survive. It wasn’t the title or status really. Although, the realization I had been knocked off the ladder was painful. It was more about the purpose for me. Don’t get me wrong- people from work were amazing and donated lots of their sick time to me. They also signed up and brought meals to my family for a month after my surgery. My parents gave me the $13k I needed to even make an appointment with MD Anderson. So there were a lot of blessings. But these small acts of kindness were like offering the sponge-dipped sour wine to Christ in his dying hour. They quenched an immediate thirst and relieved suffering just a bit. I am grateful for that. But there’s no way to even measure these blessings against the devastating losses that came my way.

I had spent more than 6 hard years in college and made huge sacrifices along the way. The biggest sacrifice was my children, as my youngest was only a couple months old when I started my educational journey, and I had the next 2 while I was still traversing the mountainside of higher education. I had to make a lot of choices I wish I didn’t have to make, but was always motivated by the desire to have a better life for them. I was 16 years old when I started college and was the first college graduate in my family of origin. I got through those very hard years with a wing and a prayer. I finally peaked that mountain, earning my M.A. in 1997. It was just 6 years after that I was diagnosed with cancer. So this degree I had worked so hard to achieve, this identity I had spent years cultivating and working towards, the tremendous work I put into seating myself in place professionally- all of that gone in one fell swoop. To say I went through Ego death is understating the utter grief of the experience, which was compounded by all the other losses I had already suffered.

So here I was in 2010, having had no evidence of disease for 3 years, coasting along on tri-weekly chemotherapy, regaining my strength more and more each day. A big part of that healing was my own effort. And this is what cancer really did give me- an opportunity to dive deep into my own self, my healing, and experience the fruits first-hand in increasing wellness. Because I’ll tell you, there were days that even grocery shopping was beyond my capacity. Having endured more cycles of chemo cocktails than most people survive, the toxicity took a heavy toll on my body, on my brain. I remember moments when the brain fog was so thick that it felt like I was paralyzed, not even able to grasp a single coherent thought that grounded me to myself or the present moment I was in. I realize some people intentionally partake of opiates or even hallucinogens to experience this, but it’s not a feeling or experience I ever appreciated. In fact, when the fog would clear enough I could grasp anything of my sense of self I would usually just cry in frustration and absolute sadness. I remembering watching Still Alice and balling my eyes out because in so many ways that was what I was experiencing. It was a profoundly felt loss, and to go from being a career rockstar to not even being able to remember my own birthdate in moments was almost unbearable. I literally lost 20 IQ points and simple tasks became excruciatingly painful. But we have little choices in these matters. We have to find a way to keep on keeping on, which is what I did. I am grateful for the opportunity all of that offered me and that I have experienced measurable improvement in a lot of those side effects I had back then. I worked hard for those improvements. But starting to recover, I also started to sift through the ashes to pull out the larger chunks of what was left in hopes of resurrecting something of a life that was bigger than just cancer treatment and surviving cancer. I desperately wanted to move on from that and not cling to an identity of ‘cancer patient’ or ‘the one dying’, as if any of that could be made into any kind of offering without some sort of putting pieces back together. I wanted to find the way to live again. One of those charcoaled and hollowed-out remains is my deep soul purpose of being a healer here in this incarnation. It’s what compelled me into choosing psychology as a major as that young 16 year old mother taking her first college class. It’s what drove me in my pre-cancer career. But I knew I did not have the strength or resources to go back to a full-time salaried career, especially in social work. So I spent the years from 2010 onward floundering, trying to pull out of the paralysis that cancer treatment had inflicted on me. I was trying to learn how to live again after learning how to die. It sounds so poetic and so easy when put like that. But it’s really like trying to make a 180° turn on a massive ship going at full-speed, or maybe like trying to crawl across a finish line with no arms or legs.

I enrolled in community college again, taking all the hard science prerequisites I needed to get into nursing school. I thought maybe this was a fresh start, a new career that would allow me to make the money I felt I was worth with my education and experience, and the soul purpose of being a healer, but which I could do part-time. There’s really no such thing as part-time social work. I struggled, taking one class at a time, as my brain was still unable to handle more than this. So one by one I took anatomy, physiology, chemistry, nutrition, etc. Many nights awake, crying in frustration and grief over the felt loss of my previous ability to handle academic studies with much more ease. And then it came time to apply to nursing school, which required a physical exam and clearing by a physician. Here I was still exhausted, suffering with brain fog, severe neuropathy in my hands and feet, and still getting chemotherapy. Not only did I think I wouldn’t get a pass from a doctor, I realized how ridiculous it was for me to even think I could be a nurse in my current physical state. I sometimes couldn’t even button my own shirts because of the neuropathy. How was I going to find veins and stick needles into them? Or be on my feet nearly all day when they’d swell up so bad from surgically-induced lymphedema that I couldn’t even get my shoes off? Mid-way through these hard science classes I also enrolled at Ancient Art Midwifery Institute. I had long had a desire to be a midwife- another evidence of my deeply felt soul stirrings grounding me into this life. No longer tied to a salaried career, I could do what my soul was calling for. But again, in 2011 I made the decision that this also was not to be my path. It was nearly impossible to find an apprenticeship where I was located, which would have meant a considerable amount of long-distance driving. Not only was this not possible for me, but the realization that midwifery is very physically demanding and also requires long hours with no breaks, left me again in this painful place of wondering what my purpose in life might now be.

La Santa Muerte: La Dama Poderosa
by Nero Karasu

I mean, to even survive metastatic cancer is a heavy burden because I feel like I’ve been given a second-chance and there’s a pressure with that, that I need to really make something of it, along with a realization that time is ticking and I will eventually die. I know that seems such an obvious statement, but most 30 year olds (or even most 46 year olds) aren’t thinking about dying. They’re too busy planning for the future. And it’s easy to make the statement- yes, we’re all going to die. Living that reality is an entirely different matter. But once you’ve met Mother Death (Muerte Madre) face-to-face, there’s no unknowing Her. She joins you at the hip and doesn’t leave. So She keeps me focused on living, on the reality that life is short and every day another one less, while also another one fully lived.

I was dancing with Mother Death, floundering on how to embrace living again, and then in 2013 SunLife decided that I was no longer disabled and they cut me off my long-term disability benefit claim. That was devastating and forced me into a position of arguing for my disability when I had spent years trying to find the ways to overcome it. It was like everything I had sifted through and tried to re-build was blown into the wind, reduced to nothing more than ash again. I knew I was not able to return to work full-time. I knew I couldn’t go back to social work. I knew medical service would be much too demanding for my precarious health state. I knew I was still fragile on every level. I knew any potential employer wouldn’t hire me when I was still so medically involved and needed so much time off work to go to chemotherapy, scans, lymphedema therapy, physical therapy, psychotherapy. So this process of having to take inventory of all the ways I was still fragile and incapable, along with the implication that I was somehow faking all of that, gutted me and disempowered me in a way I had not experienced prior and have not experienced since. Trauma is the word I would use to describe what SunLife put me through, how they bullied me, belittled me, accused me, stalked me, and then pulled the financial rug right out from under me. And that says a lot if you know about some of the other things I’ve been through outside of cancer. Sticking with the theme here, it was like gaining only use of my arms, and using the strength of my arms to push myself up from my wheelchair, almost ready to attempt to walk, only to find that someone had pushed that wheelchair right out from under me and was laughing as they watched me fall. How SunLife had the audacity to claim, even as I was still doing chemotherapy and had so much obvious evidence of the crippling long-term side effects of years of aggressive treatment, that I was not truly disabled and thus not worthy of the benefit owed to me, I will never be able to understand. The miracle was I survived metastatic cancer. But there was a cost. And it’s that cost that I still live with. I still haven’t gained full use of my legs. I am not sure if I ever will- and yes, I still have a sense of humor. 

Obviously I’m using metaphor and I don’t know what it really is like to be paralyzed, to be in a chair, to not be able to be independent in self-care. But I’ve certainly felt very bound by the ways cancer treatment has left me. And I’ve spent the past decade in this frustrating position of grabbing out at what’s in front of me but not being able to quite reach it because my arms aren’t long enough and my legs don’t work. This has become painfully clear to me since I’ve become a student in the Foundation for Shamanic Studies Three Year Program for Advanced Initiations in Shamanism and Shamanic Healing. Every initiation has been a profound teaching lesson and the lessons have come not from the actual moments of the initiatory experiences, but from my orientation towards them. Every week I’ve spent in this program I am met with the reality that my legs just don’t work. And so I spend a good amount of time integrating my own acceptance of this. I’m not talking about unhealed wounds. I’m talking about injuries that perhaps can’t be healed. Scars. And I’m not using this metaphor as a coupled-metaphor for psychological or emotional healing. There’s all of that going on too. I’m talking real physical limitations. Some people in the larger spiritual community around me won’t understand this concept of limitations, of accepting them. Mostly because they haven’t experienced this. I wonder each time I show-up for my initiation week why there’s not people in wheelchairs in these circles, people with canes and crutches, and communication devices, blind or deaf. Our culture doesn’t accommodate or validate ‘disabled’ people well. Yet these people are just as likely, if not more likely to be our shamans (Bran Stark much?). Coming to terms with my limitations is another form of Ego death and this may be the last big piece to burn down. Not only does Mother Death remind me continuously that I have a limited time here in this body, my body itself reminds me that I don’t have the stamina or abilities I had prior to cancer. But hey, I’m still alive, right?

When I come home from my time of shamanic initiation I am not just exhausted physically, spiritually, and emotionally, I am at the same time abundantly filled-up. I’ve grown and been stretched and have learned so much. I have so much to give, so much to offer. Yet again I can’t seem to manifest anything that matches my abundance. But the thing is, this has been a long pattern now- this being a visionary, but never being able to make the visions a reality. Before cancer I had much more capacity. I could multitask, had a sharp memory, learned quick, could adapt on the fly, had so much more energy, could juggle several large things. I’ve been reduced down to a chair with only working arms. This is a very painful way to live. I imagine most Western-minded people can relate to this, if only because we do tend to live either in the past or the future and struggle with presence in the NOW moment. I have enough tools and experience to ground myself to the NOW moment, but it’s impractical to stay there at every moment because life does require some foresight, some pre-planning. And manifestation is absolutely about this as well. Having a vision and passion is not enough to make something come to fruition. It also requires footwork and presence to the vision as each piece of it is materially manifested through planning, structuring, letting go and holding on. This takes energy, skill, unwavering commitment, a sharp focus, and tremendous resource and self-reliance. And here I am in this wheelchair, my arms stretching only so long.

I hear the anguish in my 96 year old grandmother’s words. She knows she is nearing the end. While she doesn’t want to accept that she is 96 years old and dying, her body limits her more and more each day. Her life, somewhat by her own choices, has been reduced to a predictable routine and life lived within a 100 foot walking distance. I am grateful I am not truly in a wheelchair with no function in the majority of my body, but I can relate to my grandmother in profound ways. She’s twice my age. Yet I too feel limited, reduced, small. I too have lost everything. The difference for me is I’ve been given a second chance, a second life. A chance to re-make something from what’s left. I just pray to God I don’t live to 96 years old. I did say how tired I already am, right?

If you’re on a path of enlightenment then you know that you’re always evolving. Your beliefs, your thoughts, they’re always open to change and always changing. Sometimes this is a subtle process, like making cookie dough. A little of this and a little of that mixes in, each thing a valid thing in it’s own right, but makes an entirely different thing when all combined. I freshly returned from a week of initiation less than a couple months ago, so it’s still wafting and I’m still deep in the processing phase. But this last week was like that moment when the sugar mixture is combined with the flour mixture. The prior initiation was like the salt going into the flour mixture, and I returned home looking at my clock thinking I had 6 months to process a whole lot of trauma that came up for me. I went to my local women’s shamanic circle and while the elder women drummed in a healing ceremony I slipped into shamanic consciousness and saw myself running a race, and falling down with a bad injury. (By the way, I broke my right ankle bilaterally on July 3rd, 2017 and then seriously injured that same foot again on April 12, 2019). In my vision while in shamanic consciousness the Spirits were there, cheering me on, telling me to “get up.” I kept saying, “I can’t”, but they just kept saying, “punch through, punch through.” I tried and tried, but just couldn’t get up. I cried and said, “but what if I am broken forever and can never walk again?” And then I heard, “well then, we’ll give you wings to fly.” It was a healing experience for me and reminded me that all is as it should be. So I came back to ordinary reality feeling lighter, and less compelled to have to force healing, or focus so intensely on processing some of the trauma (salt) that re-surfaced. But this pertains to my emotional work, my own healing and spiritual journey. What of my existential compulsion to make something of myself?

There’s a scene from The Departure that comes to mind. (By the way, I reviewed The Departure for The Urban Shaman, which is a project I’ve started since I last wrote 4 years ago. These past 4 years have been really life-changing in a lot of ways. I gained two grandsons and at 45 years old I officially became an orphan, as my ‘dad’ died of metastatic colon cancer in March 2018- almost 4 years after mom died). In a scene in The Departure Ittetsu Nemoto, a Buddhist monk who is spending his life working with suicidal people in Japan, responds to the lament of one of those he is helping by reminding her that her quest for a purpose seems foolish when the mountains and rivers don’t ask their purpose for being. The perspectives of the Eastern mind are very different than those of the Western mind. And while I am sure we can learn from one another, living in the West we find ourselves in a very driven culture that measures our worth by our doing and not simply on our being. So to just be, to just be where I am and who I AM outside of any identity attached to what I am doing, is not natural to what’s been ingrained in me. It’s not that it’s impossible to overcome, but I wonder to what degree soul purpose really burns outward from a deep place and impassions us. At the same time Nemoto is reminding his client about letting go of a sense of purpose to just be, he is himself driving himself to the brink of dis-ease. He is in many ways a bodhisattva, and admits that to some it may look as if he is suicidal himself, not caring for his own life enough to take care of himself, always putting others first. But, he says, he would rather have a meaningful life than a long life. And so he is also in large part caught in a cycle of Ego identification with his role of service to others and defines this as the meaningfulness of his life. But what if Nemoto suddenly became paralyzed and was no longer able to serve people in the way he is? Following his own wisdom he would say a person in a wheelchair has just as much value, and of course this is correct. But the real problem is, does the person in the chair feel that value? This is a deep existential pain and it drives many of us, regardless if we have an Eastern mind or a Western mind. Most of us have a need to make purpose of our suffering. And I have very much

Rembrandt

been caught in the thrashing that occurs between men and angels, or even men and God. It’s an uncomfortable restlessness that makes peace and joy elusive. My limitations are feeling like real limitations, and my vision expands me out far past them. Dreams do come true, just as miracles do happen. But both require something of us. It’s very rare, at least in my life experience, to have either just handed over as gifts. And yet, at the end of it all, that’s exactly what they are, because people can work hard their entire lives and remain in the same position all those years. So what is the magic formula really? Is there one? And how can we ever truly be outside of our innate purpose? Yet, when there’s thrashing about, wrestling, disharmony within our innermost places, it’s natural for the one suffering it to ask, “what is wrong with me?” So it is with miracles. They usually don’t come easy. Last time I asked that question I was given a powerful vision (a miracle unto itself), which inscribed onto my heart. And the answer that I was shown is that there’s nothing “wrong” with me – this is what I AM- a processor. Like a sewer treatment plant, I take in the sewage and process it until it’s drinkable water. I suspect that’s what Nemoto is as well, as Zen Buddhist as he tries to be. But this isn’t a ‘real job.’ It’s not one that pays the bills, gets recognition, or validates one in any kind of way that would quiet the existential thrashing. That has to be channeled in some kind of way. Otherwise we would just be like the pre-cogs in Minority Report, except sitting on couches instead of suspended in tanks, plugged in, but not really plugged in. Disability in America. 

One of the other things I’ve done in the past 4 years since I last wrote is enroll in the School of Modern Soul Science. It’s an esoteric school that combines shamanism, Jungianism, and alchemy (Hermeticism) in this glorious way that is deeply resonant with my own psychospiritual experiences. The rigor of the curriculum really took me inward, which is my natural condition anyway, but it invited self-reflection in ways I would likely not have engaged myself outside of the school. One of our first assignments was to take a linear inventory of major highlights, shifts in our lives, and to contain those moments in no more than twelve hand-drawn soul vessels. Of course cancer had to possess one entire vessel- how could it not? But because it is something I still walk with, like the perpetual thorn in my side, it was also difficult to contain it in a single vessel, as if it was a one-time thing that happened and then I was able to transmute it. It’s continuing to happen, and is so ingrained in my life that I don’t even have any idea who I would be without it. It’s not that I AM cancer. But it’s not that I AM not cancer either. #mypath #myexpereince

When I look out at the past 4 years I see how much change and growth has come. It’s then hard to maintain that I am stagnant, because I know that I AM not. But in circling back around, I know my life is not just for me. I know I have purpose and must find meaningfulness beyond just my own enlightenment. Yet the external manifestations of any service I have envisioned beyond myself are painfully slow, and as I’ve said so many times here already, I am significantly limited by my resources on all the levels I’ve been stripped. I have the passion, but not the stamina. And this is a very hard place to be. I’m not sharing it to complain or sound like I’m victimized by my circumstance. I’m sharing it to bring awareness to the process of healing from cancer, of recovering from the depths of the abyss of dying. I’m betting I’m not the only one that ever has or ever will experience this aspect of recovering- at least not historically. And history is always in the make. Pioneer. Way-finder. There’s a deep existential

SoulCollage by Aimee Shaw, 2017
“Miles To Go: A Moment in Time”

pain here, and a legitimate point when all the healing you’ve worked so hard to earn has brought you to a wall that you just may have to accept that you can’t overcome. I used to be a professional door-kicker. And believe it or not, this method worked. It’s what made me a damn good social worker. I just don’t have the legs for that anymore. And doors don’t seem to be opening. So I’m having to learn to lean into grace, to find increasing measures of self-acceptance, to give myself compassion even when others do not, and to be okay with not having a clear grasp on my purpose as a material manifestation. There’s a lot of pain and letting go here at this point. I often feel the reduction. I am just a cancer patient living life in 3 week increments. I am worth nothing more than a disability check, and maybe not even that much. The energy I have to expend is best spent on the tasks of daily living, on carrying my own weight as an adult. And thank God I can do that. At least I’m not relying on others to wipe my ass. I should be more grateful. Maybe I would be better off focusing my resources on finding a way to enjoy life for my own sake and forget about all y’all. And on the other side of this I am so much more that all that. I AM a shaman, a survivor, a miracle, a healer. My life is not just a story, a road trip, my path not just an illusion of Ego. Yet as the wings of the Phoenix fan the flames from which She is birthed, the more people seem to be trying to push Her back down. Did I mention I am tired? Bone tired? Heart tired?


“I like spring, but it is too young. I like summer, but it is too proud. So I like best of all autumn, because its leaves are a little yellow, its tone mellower, its colours richer, and it is tinged a little with sorrow and a premonition of death. Its golden richness speaks not of the innocence of spring, nor of the power of summer, but of the mellowness and kindly wisdom of approaching age. It knows the limitations of life and is content. From a knowledge of those limitations and its richness of experience emerges a symphony of colours, richer than all, its green speaking of life and strength, its orange speaking of golden content and its purple of resignation and death”
― Lin Yutang

“Blessing, When the World is Ending” – Jan Richardson

Look, the world
is always ending
somewhere.

Somewhere
the sun has come
crashing down.

Somewhere
it has gone
completely dark.

Somewhere
it has ended
with the gun
the knife
the fist.

Somewhere
it has ended
with the slammed door
the shattered hope.

Somewhere
it has ended
with the utter quiet
that follows the news
from the phone
the television
the hospital room.

Somewhere
it has ended
with a tenderness
that will break
your heart.

But, listen,
this blessing means
to be anything
but morose.
It has not come
to cause despair.

It is simply here
because there is nothing
a blessing
is better suited for
than an ending,
nothing that cries out more
for a blessing
than when a world
is falling apart.

This blessing
will not fix you
will not mend you
will not give you
false comfort;
it will not talk to you
about one door opening
when another one closes.

It will simply
sit itself beside you
among the shards
and gently turn your face
toward the direction
from which the light
will come,
gathering itself
about you
as the world begins
again.

Share on Tumblr