I was interviewed for a story on home funerals in Upworthy by Evan Porter, and he wrote a beautiful piece. Very grateful to be sharing it here:
Here’s the background: for the past three years I’ve had a bony bump on my forehead. It didn’t hurt or grow much, changed little, and mostly I ignored it. It started to bother me when I saw it in photographs, and to assuage my vanity, I looked into having it removed. I was pretty sure it was a cyst or other benign growth. A plastic surgeon was about to do it, but decided I really needed a CT scan first, to be sure what was under there…
Now we jump ahead to my move to Maui in March of this year. I finally had health insurance and on my first visit to meet my doctor, I mentioned the bump. So I had an xray of my head that day, and she called me later, sounding worried. She said they needed to do a CT scan and that it was a “lytic lesion”, which could have many causes, but it means something is “eating away” at the bone. So, I have a CT of my head, and now she mentions she’s consulted an oncologist.
For someone whose daughter died from cancer less than two years ago, that is about the last thing I wanted to hear.
He or she (the unseen oncologist) recommends a CT of my chest, abdomen and pelvis, and what I understand, while I’m completely freaking out, is they think I’ve had cancer somewhere in my body (for over 3 years) that has spread to the bone in my skull. The doctor was obviously scared on the phone, and this is what worried me the most. She wasn’t reassuring. She didn’t say this is just a rare possibility. When I asked “but wouldn’t I have some symptoms if I’d had cancer for over 3 years that had spread to my skull??”, she said “Not necessarily.” I told her my doctor friend had said there are many benign possibilities, and her response was “well, did you tell her it’s a lytic lesion?”
The BIG CAT Scan
I went for the big CT scan. It took 2 intense days of waiting, with little sleep, terrifying unbidden images filling my head, of what my life would be like if I was told I had cancer somewhere that had spread to my bone. Imagining what treatments I might have to go through, what would be the chances I’d be cured, what quality of life I would have, on and on. I do have a good imagination, though I was focusing on imagining my body whole, healthy, vibrant and living to be an old woman…
Finally the doctor called and told me there was nothing of concern in these full-body scans. But now they needed to do an MRI of my head, to get a more detailed image. I had an MRI done of my head, again waiting on pins and needles for a call with the results, and she tells me they still can’t tell what it is, but the possible diagnoses on the radiologist report include cancer, and also benign possibilities. Each test they think will give more information and rule out cancer, but each test shows a mystery. All this time, I can hear the fear in my doctor’s voice, talking about what next test the oncologist recommends.
Gratitude for my inner and outer resources
I am incredibly grateful for all the tools that I have: over 15 years of practicing Reiki and giving myself Reiki constantly during this time; years of practice remaining in the heart-center in the midst of chaos and fear; the aromatherapy, herbal, nutritional and homeopathic remedies I knew to use for calming my nervous system and clearing the radioactive dyes they injected into my veins; doing prayer and ho’oponopono constantly. I am grateful for knowing to get help and support from others too – receiving acupuncture and craniosacral work, hypnotherapy and energy healing from my gifted and wise friend Kathleen, talking with family and a few close friends. I’m incredibly grateful for my partner, Zelie, who was with me every step of the way, offering to be with me for each appointment, listening to all my stories and holding me while I cried.
Fear of Not Living
I am grateful, because even with all these tools, I cried. A lot. Even with my own and others’ intuitive read that I did not have cancer and wasn’t dying, I was terrified. I was more frightened than I’ve ever been in my life. More off-center and filled with anxiety than I’d been during the ten and a half months that Elizabeth had cancer, or even when she died. I kept working with this fear, asking what was it I was so frightened of? It wasn’t fear of death. I know deeply that when it’s time to die, death itself is welcome. It was fear of not living. What terrified me most was the idea that I have so much left to do, that I haven’t yet fulfilled my purpose here, and I need many years still to do that. I feel I’ve been preparing my whole fifty years of life (maybe even lifetimes) for what lies ahead, and I was afraid I wasn’t going to have that chance.
Of course, I did not want to have cancer either. Watching my grandfather, then my daughter, and now one of my closest friends go through treatment for cancer, I knew I could do it if I had to, but really. I was asking the Divine “Really? Can I please have a break?” I lost my daughter less than two years ago, I was still exhausted from my move to Hawaii, and I am entering what feels like the best, prime years of my life for my work serving others: writing, teaching, facilitating, doing healing work and bringing through the gifts that Elizabeth shares through me. I could not believe that the Divine plan was for me to go so soon, and yet, I didn’t believe that was the plan for Elizabeth, and she was just 22 when she died of cancer. I knew that it was not up to me and my preferences. I kept doing The Work, inquiring within my heart about the truth of what I was believing, and on some deep level, I had to surrender to the mystery and the suchness (as my teacher Brugh Joy used to say).
I felt Elizabeth especially close throughout these many months, from April til early August. The synchronicity of this was not lost. She had lymphoma, initially in her chest, which recurred in her brain. This recurrence was essentially untreatable, and my mystery bump was on my head, in a very similar place to where her tumor was, on the opposite side. (Interestingly, my bump had appeared some time in the months before Elizabeth was diagnosed with cancer.) I sat with her as she had brain MRIs done, CT scans of her body, countless blood draws, meetings with worried doctors, and I could only experience that through my own eyes and heart, as her mother. This time, it was my body we were talking about, my life, and it was a completely different experience. I feel that a large part of why I was going through all these tests and the emotions that accompanied them, was so that I could have a better understanding of what Elizabeth (and others facing a terminal illness) may have gone through. Another part is to take me deeper on my own healing path, feeling and expressing layers of emotions and writing about some difficult aspects of my relationship with Elizabeth.
Direct Evidence of The Mind/Body Connection
I’ve long had an immense respect for, and direct experience of the mind-body connection. What happened during this time of such stress served to more deeply embed this in my being. I hadn’t had any pain from this bump, other than an occasional tenderness over the years. However, after I heard the possibility that it could be cancer, and I was so overwhelmed with fear, with my stress levels high, I started having pain in the area of the bump! I could feel the pain increase after I had a conversation with my doctor, and I could feel the pain decrease when I placed a tachyon directly over it. The tachyon is a small disk that helps to direct healing energy to what it’s placed on. It also had an immediate effect of visibly shrinking the bump! I could feel my body relax as soon as I placed the tachyon, and seeing the bump shrink by the week also helped me to relax, so it worked in several ways.
Lab Tests to Rule Out Myeloma
Finally I had a new doctor who agreed that blood tests might give some information towards a diagnosis. Kaiser sent me an email with each test result, and with each one my heart would be racing as I clicked on the link to see the results. Almost all came back quickly and normal, (and I’ve never been so happy to be normal in my life!), until we were down to the one test for myeloma (bone cancer), which seemed to be the doctor’s biggest concern. This one, of course, took many days, and the first of two parts came back normal, which had me sobbing in relief. However it was on a Friday afternoon that the last of the tests came in. I was so nervous – it felt like I was going to open an envelope that would determine the course of the rest of my life. The result showed something that I did not understand and didn’t know how to interpret! I could not believe it. I had to wait til Monday to receive an email response from my doctor that it was normal! Finally, something in me shifted and I trusted what I’d been feeling, that I do not have cancer and my body is healthy.
There was one piece to complete however, which involved surgery (albeit minor), to my head. You may know that Elizabeth had brain surgery in July of 2012, to try to remove the tumor which wasn’t responding to chemo, and the surgery did not go as planned. Her brain swelled, necessitating a second surgery to remove part of her skull, and she then had a stroke. After a week in ICU following the surgeries, she came home to hospice. So having a bone biopsy of my skull was rather unnerving, but this was the way to get clarity about what is causing this bony growth. (I’d been asking for this since the beginning of the tests and mystery, but that is another story.)
A Bone Biopsy and Flashbacks
The biopsy itself was fairly uneventful, with Zelie flying with me from Maui over to Oahu as that’s where they can do a CT-guided biopsy. They told me I wouldn’t have much pain afterward, even though the radiologist had to essentially drill a small hole into my forehead bone. The next day at home, as the local and sedative medications wore off, I started to have intense pain. Fear combined with pain makes it much worse, and because I’d been told not to expect pain, I was worried that something was wrong. We were also preparing for a hurricane that night, which only added to the stress…
Sitting with a frozen pack on my head and crying in pain brought me right back to when Elizabeth was having horrible pain in her head, when the cancer had come back in her brain, but before we knew that’s what was going on. I finally took something stronger than a tylenol, along with many remedies to help reduce swelling and bruising, and to facilitate healing, including arnica, dandelion root tea, and turmeric, and was able to get some restless sleep that night.
I received an email the next day, saying there was no cancer found! All they could say was that it was “reactive bone”, usually caused by trauma. So on one hand I’m back to where I started, with a bump on my forehead, no real idea what it is, and knowing that it is nothing to worry about, which had been true these past three years. On the other hand, I’m in a very different place than where I started: I have a new perspective on mortality and what it can feel like when you, or your doctors, believe you may have a terminal illness. I have a different appreciation for the amount of time we have here, and how precious each day is. I wish I could say that every day is beautiful and the whole world looks fabulous all the time, but that’s not quite it. I’ve always been grateful to be alive. I lost my father at age 3, and had a usually fatal illness myself when I was 4, so I’ve been blessed with a profound appreciation for the gift of life as long as I can remember. What has changed is subtle. It is slowing down, eating more croissants (cause we never know…), loving more, with greater compassion, and I hope, greater presence.
Almost two weeks later, I still have a bruise/abrasion (mysterious how it got there – it covers the bump, but it’s not where they placed the needle) in the shape of a heart on my forehead. It may go away eventually, but I feel like I now have a heart tattooed on my third eye, a daily reminder to see everything through the heart. And another reminder that my heart will continue to heal.
is not a weakness, a passing indisposition, or something we can arrange to do without, vulnerability is not a choice , vulnerability is the underlying, ever present and abiding under-current of our natural state. To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to be something we are not and most especially, to close off our understanding of the grief of others. More seriously, refusing our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.
To have a temporary, isolated sense of power over all events and circumstances, is one of the privileges and the prime conceits of being human and especially of being youthfully human, but a privilege that must be surrendered with that same youth, with ill health, with accident, with the loss of loved ones who do not share our untouchable powers; powers eventually and most emphatically given up, as we approach our last breath. The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance, our choice is to inhabit vulnerability as generous citizens of loss, robustly and fully, or conversely, as misers and complainers, reluctant, and fearful, always at the gates of existence, but never bravely and completely attempting to enter, never wanting to risk ourselves, never walking fully through the door.
© May 2014 David Whyte
Excerpted from ‘VULNERABILITY’ From the upcoming book of essays CONSOLATIONS: The Solace, Nourishment and Underlying Meaning of Everyday Words.
I just saw this on Facebook and have to share. He writes so beautifully of vulnerability – that exquisite loss of power, of control, that place that we wish to hide from, but it always catches up with us…and when it does, we can allow ourselves to be fully in it, and it’s delicious in its realness, its absolute presence of being, when we are truly vulnerable, and surrender.
I promised the link to my interview on NPR, and here it is: Voices for the Cure on Arizona Public Media. Mark McLemore was a wonderful, thoughtful and sensitive interviewer, and I’m so honored to have the opportunity to share more of Elizabeth’s and my journey with more people.
it’s your 24th birthday, and you’re not here, and you’re very much here. I didn’t know exactly how I wanted to spend the day, but I knew I wanted to do some ritual to honor you, and also something to nurture myself, some way of tending to my body – my “flesh and blood holder of humanity” as you wrote so eloquently.
Then a couple of days ago I saw someone announce on Facebook that she had an opening for an ayurvedic massage today, and that seemed perfect – it showed up and presented itself, so I said yes. Next I realized this was the day to take some of your ashes up to Mount Lemmon. I know you loved it there and it was the other place I knew I needed to leave some of your ashes before leaving Tucson.
First thing though, I shared one of my favorite poems of yours on FB, A Lifetime. It feels to me that it says so beautifully what you wanted to do, and what you did in this lifetime. It makes me happy to know you even thought about all of those things, and then that you got to experience it all…it’s quite extraordinary.
After my relaxing massage, I was ready to drive up the mountain. I packed up your bundle of hair, carefully wrapped in one of your scarves, and a shovel. I still had the hair you’d saved from when going through chemo the first time, and I know you’d intended to do some kind of burial ritual, so I wanted to complete that for you as well. I took some flowers, and then filled a small glass bottle with some of your ashes to offer to Mt Lemmon.
I drove up with Tilly beside me, wondering all the way where the hell we were going, and both of us were relieved when I found the right spot to bury your hair. Tilly was happy to walk around under the pine and oak trees, and I easily dug a spot for your hair in the soft ground, covered it with dirt and pine needles and put the flowers on top. It felt like there were bears nearby, maybe watching me, and I am certain they’ll come and sniff around at some point. I could feel their presence in the trees…
I got back in my car and drove further up, looking for a place with the really incredible stacks of rocks. I asked you (and I’d been feeling your presence all day of course), where you wanted me to place the rest of the ashes – did you also love those rocks, or was I just imagining that, since I love them…? I heard you say that you do love them, and, to remember that where the ashes go is about what I want, that it no longer matters to you, you’re not in those ashes. You said that you love that I’m taking the time to do this ritual, but it’s for me, not for who you are now…I could also feel the ways that we were, and are, so merged. That there are times that I can’t tell whether it is I who likes or experiences something, or you.
I trusted that I’d just know, and sure enough, I saw those rocks, with a parking area, and with Tilly leading the way on her leash, I realized there’s a beautiful area to walk down and among the rocks. I’d been there before but somehow never saw that, even though there were many others walking down that way! I meandered down a path, down to where there was just the view of Tucson desert I’d been envisioning, and placed your ashes in the corner of some huge rocks. It was out of the wind, though I know not for long. And slightly off the main path, but there will be plenty of people coming through. Along with the immense natural beauty, there was also graffiti and cigarette butts, and it seemed the right place for some of your ashes to rest.
You were such a combination of the ethereal and very much of this world. When you were little, making up words and dances (like the “hatdeck” when you were 3, and fufia and kufia – were they unseen friends?), seeing spirits, writing poetry and loving the Spice Girls and Destiny’s Child. Now you seem to be truly at peace, in the angelic world of the ancestors, and yet, you come down and play Angel from Montgomery today on your birthday, which I haven’t heard in months! “To believe in this living, is just a hard way to go…” yes, sometimes it is.
So, my sweet girl, though I miss you deeply, and can still hardly believe you’re gone, I am mostly feeling at peace these days. I hear that you want me to be happy, and mostly I am, though I know it’s fine to be sad too, and that crying actually makes me happy at times. I was afraid that this second year, and now your second birthday after you died, would be harder, as some experience that. I’ve found thankfully, that it’s easier with time. I can feel your presence ever closer – almost merging, and yet further away, as you’re more diffuse, more spread out, though still very available when I need to connect.
I know that you know all of this, but I wanted to put it into words, to help me remember this day, and share it with others. You make my life so beautiful, along with your sister, and I’m so grateful!
Notice the orbs and the lights (including purple ones) that showed up in these photos.
(One of Elizabeth’s essays when she was almost done with her first (and we thought only) round of chemo, followed by her musings on titles and structure for the book she planned to write about this experience. God I love her mind and and am so grateful to have these writings…)
Beginning to Leave the Hospital
March 5, 2012
I feel like I’m only now beginning to walk out of that hospital.
UMC, the day after they diagnosed me. The day after they told me it was cancer.
I was lying in the hospital bed drugged up on morphine right after surgery (my first surgery) and my biopsy. I looked at my mom all swollen with makeup running down my face and said to her (smiling) “If it is cancer its going to be ok.” And she said “Yes.” And then a few hours later they/the surgeon came to tell me it was indeed cancer.
I feel like only now, approaching treatment six, (the last one please god). Chemo round one, round two, round three, round four and round five are done. Whew. I still feel like I’m in the hospital.
The shock: the utter senselessness and cruelty of being beautiful and twenty-two and having cancer is just starting to wear off and the feeling has begun. The feeling of having had cancer. I feel like the shock and senseless and sudden, unprovoked tragedy of it all kept me mentally in the same room it all happened in until now. Now, six months later, my mind is beginning to catch up with the body that gathered her things from that room, left the hospital, went to school and told her family and teachers she had cancer. And got on with it. Took the treatment like a grinding kick in the face and a wet cold punch in the stomach, week after week and sat there quietly and didn’t say anything. And didn’t yell at god or the world or the doctors for A: letting this shit happen and B: letting the treatment, the cure be so goddamned miserable that it destroyed her feeling and her heart and her youth and made her lose her hair and the oh dear god, fucking pic line.
They called the thing they put in me a Pick Line. THEY CALLED IT A PICK LINE, WHAT DOES THAT MEAN TO YOU? They put this tube into my veins and all the way down into my heart and I didn’t want it and I didn’t understand what they were going to do until they already were doing it. They exposed me to way too much radioactivity in the process and sewed it up into my skin like it was no big deal and it hurt, it fucking hurt.
Then there was this big gaping wound and a tube sewn into my body permanently and they forced a long tube into my heart and I didn’t want it and it wasn’t necessary and that was the worst rape I’ve ever experienced. And I never cried. I sat there and was good and quiet and cooperative because I trusted that they knew what they were doing and that they could save my life.
And they did.
But me, the real me who talks and has feelings and still can’t comprehend the fact, that cancer was inside of me, that it even could be. The me that still can’t wrap my head around something so unfair and unpleasant could happen to the blessed child who led a charmed life. She (that me) is still in the hospital. Because the shock, the pure and blessed numbing shock of the news that cancer was in me froze her in time. It froze her so the me who is numb and unfeeling and quiet and detached and removed could take over. Take the chemo, take the treatment, take the tragedy. And hold space for the sadness of others. The me who I generally associate with is just beginning to de-thaw in that hospital room, shake her head and wonder how the fuck did I get here and where do I go now? I’m hoping, I mean I think, she can come join me now.
(Musings on her future writing…)
The Stories We Will Tell Our Children
The journey of a 22 year old cancer survivor
Why this title is important:
Dr. Miller told me on our last meeting that all this would just be a story I would tell someday (an unpleasant one)
The realization that I want children came with having chemo and being told I couldn’t.
My children will exist because I had cancer not the opposite (strange)
This is my history
Buildings, ie hospitals and doctor offices are going to be the transitional and pivotal star points for this experience. THIS IS THE STRUCTURE FOR YOUR STORY ELIZABETH. IT HAS ALREADY BEEN GIVEN. THIS IS LUCKY. BUILD THE STRUCTURE/SECTIONS/CHAPTERS OF THE BOOK AROUND CHEMO ROUNDS AND HOSPITAL VISIT AND DR. VISITS.
Interview Mom, perhaps others as an example of how narratives vary
talk about trauma theory and troubles with perception
there is a lot here.
Now, should it be a biography or just this story?
Other ideas include:
“High Tales and Desert Winds”
“For My Mother”
Mama: How having cancer brought me back to my mother (The journey of a twenty two year old cancer survivor.)
©Elizabeth Blue, 2012