sometimes life has to remind us …
Sunday March 30, 2025
Greetings readers,
There’s a feeling that I’m missing a deadline as March has a foot out the door. Every morning, before opening my eyes, I think today is the day I'll write my next piece. The challenge, if I’m writing about the personal, is that there have been many transitions around us. Writing month to month seems to increase my awareness of just how many big things are in constant motion or stuck—personally and beyond.
Is it the age we are, or are all the rest of you surrounded by many deep stories in addition to your own?
You know how there are quotes floating around about how our species wasn’t created to have the rushed and complicated lives that are now the norm to support our living? We were made more in the likeness of homesteaders. Slow, steady, personal work to sustain you with intermittent crisis or “shocks.”
Having a lifestyle now that is more in the homesteader column, setting my own pace based on where my mind/body lands throughout my days, I feel like I can look at that paradigm a bit more realistically. My hypotheses would be the main reason people aren’t always open with others about the trauma, crisis, illness, and all, in others’ lives or their own, is that many simply don’t have the emotional bandwidth to open up that level of energy. It’s all they can do to stay on the treadmill of their lives so they don’t feel they have the capacity for more.
Stephen, my retired cardiologist husband, has served as a medical advocate for friends and loved one’s going through medical treatment and helps folks fill out their advanced care plans.
We get it and I’m sharing to illustrate my deep understanding of how surviving in mainstream society leaves little room for opening to others’ ongoing struggles. It does take multi-faceted energy and time to go on such a journey with someone— especially when you are holding down so many other roles in your life. We must always be checking into our own capacity and capabilities. This is when a community of caring folks is really the answer.
Stephen’s best friend has recently had a catastrophic brain bleed. There’s so much to say, but I don’t feel it’s a story I can share in its entirety.
I can say that this has been unfolding since the beginning of the month.
I can say that this is a person who lived a life outdoors and wanted no part of medical institutions, but, this time, had no choice.
I can say that besides sharing with my husband verbally what he wanted should something like this occur, he refused many encouraging offers, and did not have an advanced care plan.
I can say my husband is being his person, and it is all heart wrenching.
Please, for your families and loved ones, create an advanced care plan, file it with your hospital and primary physician’s data base.
Do this no matter your age.
Keep it where it can be seen in your dwelling.
Talk about it.
Carry it with you when you travel.
Our friend assumed if something catastrophic happened he would die instantly. We have to remind ourselves there are myriad death scenarios, we can never pin point the exact manner we will die.
Have a life threatening condition? You might die in an accident tomorrow. Sorry. It’s true.
New Zealand has created an excellent online document you can complete and turn into your medical team. (linked in this sentence)
Research “advanced care plan” in your country/area to find resources.
We have a living will filed with our will which holds those desires and legalities, but most times loved ones don’t always take or have time to research if there is one when life and death decisions are being made. This is why it is important to have the plan filed within your medical system.
We landed in an area of New Zealand where there is a fair amount of distrust in medical treatment—a vast amount of people attempt to rely on alternative modalities. No harm. No foul. However, there may be a day in your life when you are found injured, or have medical event and you will be taken into the medical system. Please don’t be so grandiose or in such denial to think it will never happen to me.
When I sat down this Sunday morning did I think this was how I’d begin my big hello? No, but there it is. Trust me it’s the compassionate and smart thing to do for yourself and loved ones.
I can’t trust that my own husband will be alive or able to serve in that capacity if/when I need it— though that to me would be the best case scenario. We can’t make these decisions based on best cases, think worst case scenario. Sit with it, deeply process, write it out, share. Encourage those close to you to do the same.
Resources:
Finding your personal advanced care plan resource, complete it, and have it filed with your medical team, attorney, telling your people about it and where to find it. Also add a living will to your standard will.
Book: My Stroke of Insight: a brain scientist’s personal journey, by Jill Bolte Taylor, PhD
Her experience has brought great awareness for best practices for people with strokes. brain hemorrhages, and brain injury to their doctors, caregivers and loved ones.
I was especially struck when she spoke of her mother breaking her from the rehab facility where they were routinely getting her up extremely early every morning, sitting her in a wheelchair or geri chair in the hall or an open chaotic space, TVs, activities, etc. Her mother was appalled, knowing in her heart what her daughter needed for her brain to heal was regenerative rest. Jill believes rest was at the heart of the success of her eight year recovery period from her stroke.
In her book she gives a list of suggestions for medical teams, loved ones re. the approach to take when recovering. Highly recommend finding her work. She’s on youtube in interviews, TedTalks and there are many online links.
“Among the lessons Bolte Taylor has for medical professionals and caregivers: Don't accept timetables for recovery, have hope in the brain's plasticity and ability to be repaired, and appreciate the value of sleep in the healing process.” — Brain and Life
I’m still engrossed in The Telepathy Tapes and their ongoing mission. I’m recently very moved by the stories on how nonverbal adults, following strokes or with other issues, also communicate telepathically. This is relevant to our friend’s condition and helps me think bigger in terms of connection with him.
On a more personal note, let’s begin with a lovely expression for us all—
There have been recurring inner rumblings within us of “LIVE NOW” well before this last medical trauma of our friend. There are always reminders, aren’t there?
As most of you know, if you’ve followed my story throughout the project, we had personally amassed (and continue to) many untimely illnesses and deaths of dear family and friends so we had a hearty rationale of making choices honoring the concept of doing our dreams when the nest emptied. Do it while we can …
Not exempt, we’ve had our own big medical issues. My husband has rehabbed well from his widow-maker heart attack, stayed compliant with his medical treatment and is well rehabilitated.
My own challenge for the past two years required a great deal of medical investigation to explore (hello there national health system, you’re okay), trying to rule out more than the first obvious diagnosis they came upon involving my kidneys. Sparing you my intricate history, my fatigue, nausea, pain, bloat, etc is because of a stage 3 kidney disease I would have never in my wildest dreams imagined having.
Unfortunately the medical mantra is “incurable.” And I get that. Most people with this condition need a kidney transplant and/or dialysis at some point—usually before the age I am now. Of course some opt not to have either and move towards end of life with less legalities than the end of life options presently put a person through.
This condition has absolutely changed my life. My go-to 1 to 10 scale to assess any sort of wellness, 10 being the best you’ve ever felt, has been converted to a 1-5 scale, five being as good as it gets. It’s not an “exercise more”, “do this, do that,” and it will help the condition.
Saying all of that, being limited and not having tangible actions to do for positive change has been more than frustrating. And exhausting. And painful. After all, by changing my nutrition converting to SCD (specific carbohydrate diet) and doing my mind/body autonomic nervous system balancing, I was eventually able to taper off the Crohn’s heavy duty meds in 2011, including a monthly IV treatment. The kind of meds you have to sign off on all the life threatening side effects. I found a way, for me, to improve and thankfully sustain.
Recently I was given a sliver-of- hope-recommendation of trying an approach that may ease the progression and improve quality of life. That dusting of hope has actually had a positive effect on me, feeling more empowered—valid or not—it’s a new, cleaner space to rest in.
Empowerment is medicine for me it seems.
This approach is a six month long trial I’m doing per a recommended strategy. I will report in at the end of the six months. It will be miraculous to me if there are positive results. I’ll be very pissed if there aren’t.
It’s okay. I’m allowed to be angry at times about my life being so altered by this frustrating condition. Stuffing the real emotions does nothing for my health; the frustrations ebb and flow. Good news is, I have the energy today to acknowledge the anger.
One thing that tells me there is some improvement in my status is that I have any energy at all to write. Or have meaningful conversations. May it continue. There was a long period of time that wasn’t possible.
We have many personal transitions happening in our family. One child moving and getting married overseas. One g-babe we haven’t yet met. Our youngest branching out in surprising ways with work and travel. The same one who left on a trip from NZ to visit his US sibs, saying “I’ll never live in the US,” and has been living there on his own for the past two years. Currently traveling after an intense gig commercial fishing on the Bering Sea.
With nine children in our blended family, there are always major transitions afloat. Even with distance between us, we feel very close to every one of them and carry their joys and concerns with them. Thank goodness for video chatting ability. One of the kids talked about how communicating like that gives time for a concerted 1:1 effort, while family functions didn’t usually lend itself to much time to catch up. So very true, And there’s the beauty when we have them with us for extended visits or see them in their own domain.
I’ll wrap with some reflections from the book I recommended above.
Like our friend, the author’s left brain took the brunt of the damage from her stroke, and was paralyzed on her right side. She eloquently speaks of the beautiful perspectives, experiences, and insights within her active right brain while her left brain slept. Her description is that the right brain is the part that is locked into our greater consciousness, while the left is the side that holds the lists, must-dos, worries, and such.
Being a neuroanatomist she had a fascinating perspective of what was going on in her brain and encourages us all to live in our right brain as much as possible by practicing what brings us joy, music, art, writing, and whatever resonates creative pleasure to you and practice a baseline of meditation.
One thing I think I’ll hope to do more of is post more of the nature and life lessons on my Death Dialogues Project instagram account and Substack posts as well. I noticed that they give me a wee creative buzz. That is a simple way to help remind myself of the contentment around us and use a smidge of my right brain. We have some upcoming major, interesting travels and maybe I can share some of the insights from the column of LIVE NOW.
Trust that I have many other thoughts, beliefs, spaces, and practices that have been my personal medicine and connect me to love and a greater good far beyond myself. As many say, the earth-school dimension is challenging by design. That it is.
Much love,
Becky
I highly recommend this podcast episode with Lauren Daley, MD, a palliative care doctor who gives hope and empowering knowledge about end of life and the care surrounding it:
106. Talk Dying to Me: Lauren Daley, MD
Lauren is a palliative care doctor, motherless daughter, longtime griever and believer that having a healthy relationship with our mortality is the secret to living a better life. Her podcast, "Talk Dying to Me" shares stories from the crossroads of life and death, and all of the messy bits in between. She hopes her work creates space for fellow mortals…
Rather than having paid subscriptions, I’d like you to consider buying our book to support this work—click here for an alternative to Amazon
Yes, in the US we have Advanced Directives. You can write what you think you will want and share with family member and have a copy at your local hospital. And appoint someone as a medical proxy. Very good plan. Which also goes along with having a will or a trust about what you might like to have happen with your belongings, including pets. It is good to be prepared because you never know what the future holds. I had a person recently I know who was doing well, my age, and was getting ready for a joint replacement, active....and they unexpectedly died of a heart event. It happened so fast. But I also know when I try to talk to my family about the future and death, they are not very open to it. It's a part of life.....I wish we could all be more accepting about the planning for it.
This dimension sure is challenging, isn’t it. I empathize with Stephen as my own Bestie manages with stage 4 prostate cancer, and I do my best to be a companion on that journey. Of course we are all approaching. Our own finish line, but only some of us see it before we get there. Is that a gift, perhaps?
I had a vivid dream of Grant last night where he gave me a huge bear hug, lifting me up off the ground. I got up early to look at my email and found writings from both you and Keegan waiting for me. I feel blessed to be connected with y’all. Sending you our love from afar.