In November/December 2022, I was sitting vigil with my dear friend at the end of her life. That journey feels so long ago in many ways; 2023 will forever be known as my year that wasn't.
In January 2023 I was slammed by an underlying condition that had yet to be diagnosed. Much of my 2023 was spent bedridden when not being scanned and probed ad nauseam (literally, lots of nauseam). Month after month I struggled. My career as a clinical mental health professional came in handy for tapping into tools that had long been imprinted in my brain; they are what I leaned on.
My primary tools follow, in case someone may find them helpful or comforting on their journey–theirs or someone dear to them. Forgive any redundancy from my last post. I’m now able to give this topic a bit more energy.
Breath-work. Knowing I was regulating my autonomic nervous system helped center me when all else felt wobbly and unsure. Whether it did or not, I convinced myself that the practice was mitigating symptoms and slowing the trajectory of my condition. The practice allowed me to have a sense of control; we can all use grounding and centering in our lives. Most of us know that slow even breathing can give us a visceral sense of ease. It's been my job to pick up those changes, tiny as they may be. (look up HeartMath if you would like to see some research and techniques)
Mindfulness. If I didn't practice being in the here and now, my mind went to some of the places where grief also can live.
Regret: Ruminating about times in my life that I could have done better or had downright screwed up. No, that didn't help. Those times live in the past. Using my own advice, I'd remind myself to stop looking in the rear view mirror.
Fears for the future: How long can I live like this? This isn't living. It's the closest I've ever felt to being given an end of life prognosis and has turbocharged my empathy towards those who have received one. Wallowing in negativity about what could happen in the future was futile and did not help me or my loved ones' greater good.
If I turned the regret into gratitude for the life and loves I've had along with the miracles experienced, and turned the fear and dread into compassion for those suffering worse than me, it resembled a spiritual practice.
Remembering that this moment is the only one I can be sure of reminded me to open my eyes and heart to beauty. The blue heron couple who, for the first time, became our regular visitors. Nature, however and whenever I was able to experience it. The stars dancing above us. The tender care of my husband–par excellence. Our loving (adult) children and grandchildren and extended family and close friends (whanau).
Nature. There aren't enough words to describe how many times nature came to my rescue. If nothing else, putting my bare feet on the ground and imagining healing coming from the earth. Grounding.
From the NIH library: Grounding or earthing could be the anti-inflammatory antidote for modern man. It is one of the greatest kept secrets when it comes to our health and aliveness and only a small part of the scientific community really understands the concept. Once health professionals and others realize that grounding is especially important in preventing inflammatory illness, an incredible effect on public health will be realized. The breadth of validation from previous published data and real-life testimonials is a testimony of the earth's dramatic impact on healing the human body.
Nature brings us many cues and opportunities to stop and fully put our awareness on what's happening in front of us (alert mindfulness). The wind in the trees. The sway. The howl. The response of the animals. The movement of the clouds. You get it. Any aspect of nature holds so much if we only pause and focus. Let it trigger nice and easy breathing and sense of connection to all that is, was, and ever will be.
Non-judgment. Boy did I want to beat myself up for all of the things I did not have the capacity to do. To not even have the energy to write or read blew me away. A soothing elixir was when my writing friends would express empathy, "Oh yes, I get it. Writing takes a lot of energy."
When my brain pauses mid-sentence and I have to collect myself and work out what I want to say, instead of being terrified, I restructure to, of course with the fatigue and energy zap I will be word-searching at times.
Not having my usual talkativeness and desire for social connection. When there is no energy, previously beloved connection falls low on my list of needs– feeling near impossible. As I’m easing into more connection with others there is concrete evidence of how that buzz of friendship is frequently paid for with a wave of exhaustion. I’ll take it. (unless I can’t)
Once and for all letting go of blaming myself for not doing this or that to keep myself healthier: this is an inherited disorder. I'm just lucky it hadn't reared its ugly head many years ago; my life would have been so very different if it had.
I shamelessly paced myself and reorganized my closet over a week or so, only keeping clothes that would feel comfortable on my expanding girth (part of the condition) because that was the loving thing to do for myself. I refuse to smack-talk myself about my slowness or girth.
Accepting medical treatment. Having been diagnosed with Crohn's disease in 2009, I was thrilled that I didn't have to have medical intervention since my move to New Zealand in 2011. My mind-body practices worked well. Sensing changes, I had a self-care system that worked to turn any symptoms around.
Seeking medical consultation, assuming my Crohn's was in a mean flare, I finally chose it after being primarily bedridden the first three months of the year. I was scanned repeatedly, poked and prodded as this new condition was discovered, and other conditions ruled out.
I've now joined the ranks of being a full-fledged patient and I'm grateful for the compassionate care I've received.
Bumps? Yes. I'm still awaiting results of a chest x-ray that was done months ago. I've had covid since then with a lingering wheezy cough which would likely make the first results null and void.
I'd still take nationalized health care any day, as my friend who died frequently vocalized. Also being a US citizen, she couldn't wrap herself around the fact that New Zealand healthcare would leave her and her survivors with zero medical bills for her extensive medical intervention.
On the flip side, my husband and I fear being in the US and having a health flare or emergency that could bankrupt us, which means we love having our nine children, grandchildren and partners once again being able to come here to visit.
Releasing expectation. No, I can't sign up for a future walk, run or event. A definitive rsvp for anything is a thing of the past. Any travel plans will be the most spontaneously planned of my life, if they are made at all. We will likely splurge more for the flexible tickets than the travel insurance. If either of us crash, it's smarter to high-tail it back to the land of nationalized health care.
My status is unpredictable and can change within a day. If I'm able, we'd love to take an extended trip that we've always fantasized about–just the two of us–since Mr. 19.5 has flown the coop after 36 years of parenting and supporting youngins.
Not only do I release expectation for myself, but for others. A son and his partner were recently here for two months (heaven), along with our youngest son (who has ventured off to the US) for a very short covid-Christmas. Next, a couple more sons will soon stagger their visits. That is a beautiful thing and much appreciated and something the COVID lockdowns had stolen from us. We compassionately do not expect it of others in this life that is such a challenge for everyone to navigate.
We file every visit under: count your blessings.
Understanding death more intimately. A little ironic, eh? Ms. Death Dialogues Project.
I wish I had the energy to write out my feelings of this "big picture" puzzle being assembled along the way, but given that view mainly correlates with the times my functioning and energy is at its worst, that hasn't happened much.
These times seem like the heralding of the stage of life my demographic-peers are headed for or already immersed in. This year we've had multiple friends navigating their own waning health. Deaths. Close calls. Life.
Sometimes I wish my inner spirit felt as old as my health demands, but it consistently feels like I'm held captive in a decaying shell; a common theme other aging and/or ailing folks have shared throughout the years. My mom lived until 95 and would frequently say, "I'm always shocked when I look in the mirror and think who is that old lady?" Each time she'd give a childlike giggle as if it was her first time saying it.
I have friends contemplating the end of life choice act; when and if to start the procedure to be considered. Of course, that brings up a more personal experience of me contemplating what I might choose if I was in their situation. I warned my son during his visit as we talked about about the issue, there could be a day that living miserably may not seem like the kindest choice for myself. While also reiterating that I no longer felt anywhere near that time, just planting the seed that I fully agree with folks having that right when their time comes.
Writing has been a cathartic process throughout my life. It feels good to write this but I'm becoming so bored and tired of looking in the mirror and pontificating on what I'm experiencing when I do have the energy to write. And I imagine it becomes boring for the reader.
I now have a bit of a renewed sense of my mana (a Maori reference for the power of the elemental forces of nature embodied in an object or person). That light was snuffed out for most of 2023. Since recently starting a very low dose of medication typically used for other conditions, that was offered to me earlier in this process and I rejected, I'm finally experiencing a bit of relief from the symptoms that rendered me incapacitated.
Rather than functioning at a 2/10, I'm happy to take a 6/10 and can only hope that holds. In typical parental fashion, I accepted the newer med more on the chance I would function better with family visiting, than taking it for myself. That's okay. I've found it now and hope the results continue.
It would be lovely if I could say that I'm fully on the other side of 2023s brand of "hard," but since it's a hereditary condition, I won't ever be able to swipe my hands, "spit-spot, I'm done."
My hope is that there will be more pieces from me here, because that type of writing has been such a part of my living, I'd like to share when I'm able. I'm keen to feel alive.
Thank you to all of you who have reached out. Your support lifts me.
Until then and with love–
Becky
A warm greeting to all of the new subscribers. Seeing the subscriptions come in is a bright spot in my days. I'm very pleased to see those of you who've come over from John Pavlovitz's Substack. He was a fairly early guest on our podcast. You can hear his episode HERE.
I’m so sorry to hear all of this Becky. My prayers will continue for you, your hubby and your beautiful family. God is a God of miracles… I know because I am one and he is with us always .. holding us up with his loving arms around us. Much Love my dear friend! ❤️🙏🏻🙏🏻❤️
You are always on my mind, precious friend. I love you.