As I open my MacBook, the eulogy I wrote for my dear friend is the last thing I have written and greets me on the screen––writing that was a struggle, emotionally and energetically.
Struggle has continued to be a theme. For the past couple of months I've had the desire to give those that follow The Death Dialogues Project an update but I haven't had the energy. Or the words.
Much of the time over the past many years I would go through periods where I would say, "Wow. I must have another bug" or blame the way I felt on the Crohn's Disease diagnosis that was revealed in 2009, even though it had been with me throughout my life.
After my friend Dawn died I began to feel very unwell; that has progressed throughout 2023. Exhaustion from the journey with my friend, we thought. A bug? The Crohn's?
Finally fed up with months of being incapacitated and truly miserable, in early March I looked at my retired doc husband and said, "I think it's time. I have to go to my GP"––my husband agreed.
Fast forward to now, May 30th, and for the past ten weeks, I've not only been very unwell but trying to wrap my head around the fact I have a new life-limiting diagnosis of a progressive genetic condition that I've carried with me throughout my life.
Most of the past "bugs" and many symptoms and oddities have probably stemmed from my “new” diagnosis rather than the Crohn's. This is surely one of the main reasons that the temperate climate of the Northland of New Zealand, which is far and away from the temp extremes in Illinois, has felt more healthy for me these past 12 years.
But here I am now, in this moment.
This last bout of "oh I have another bug" intensified and rendered me bedridden about 80% of the time. My bloodwork, a previous CAT scan, and new ultrasound pointed to the cause. Now I'm right in the middle of what it's like to get treatment for a serious, life-threatening issue in a country with nationalized health. Speedy is not a word that comes to mind, but I'm happy with my GP and specialists thus far.
I've had an MRI and have another MRI and other procedures by a different specialists that I'm waiting on appointments for. There may well be more tests/interventions. In this relatively short time I've turned from a person that required minimal meds to one who throws back a handful of meds twice a day.
Bone deep fatigue, nausea, pain, poor concentration, ebbs and flows of odd sensations and overall struggle with an ability to function appears to be my new normal. The trajectory is a mystery. A remission of sorts would be great. We can hope.
There is no cure for this condition, simply a guarantee that it will continue and progress. Everyone that has this relatively rare disorder has varying symptoms and trajectories. Many of the deaths are sudden–– from heart disease or brain aneurisms (my father died of one in 1983), even though those aren't the primary systems involved in the origin of the condition.
I'm an outlier, not have disabling symptoms until my 60s. In hindsight, three generations of the people that I likely inherited this from died suddenly right at my age. Yep, it would have been good to know to cram as much as I could into my life before now, like my friend who also had a genetic disease but knew it since her mid 20’s did, but I guess I've done okay.
You all who have followed the project understand my desire for openness and transparency regarding all things end of life, the before and the aftermath. I assumed when my time came, if it wasn't sudden, I would openly share my journey with you all. What I didn't take into consideration was not having the energy to do so; I have not had it. I'm left pondering how all of these people with end stage conditions ramp up their stamina to be writing memoirs during their wind down time. That, my friends, is not me.
My mom used to talk about how cats and other animals will creep away into the woods or abandoned shelter to be alone when they are very unwell and/or dying. All I've got to say about that is: meow. For as outgoing as many feel I am, those close to me have known that, for me, no news isn't necessarily good news–– rather no energy to put into initiating contact.
The Death Dialogues Project podcast will always be there, but I'm unable to continue it.
Life is a big question mark for me and there are no promises about me feeling up to contributing much more here or at the project.
There is so much I could write about, beginning with what it feels like to learn the life span you assumed you might have sans sudden death may be much shorter than you assumed.
With both of my conditions, there's nothing I did to cause them or could have changed.
While Mr.18 (the last of nine in our blended family) took off for the big smoke to earn his credentials and start life, my own new life began. My husband and I saw so many folks throughout our careers who put off doing what mattered or would be entertaining for them ––waiting for retirement––and died before they could enjoy it. When we were younger we’d never have imagined we might join that cohort. (Recall my "superman" had a widow-maker heart attack at the end of 2022.)
The expansive list of things we wanted to do with our families, travels, New Zealand adventures, etc. is on hold. Imagine being in the US or elsewhere and needing intense medical treatment with no insurance. With both of us having pre-existing conditions, our usual travel insurance would not cover those and we can't take the chance of losing our means to live due to an exorbitant medical bill.
Having been an advocate for mindfulness, personally and professionally, for the past three decades, it takes on a whole new meaning when a questionable prognosis creates the absolute knowing that my best practice will be to prescriptively let go of the past, not focus on the future, and just be. Moment by moment. Day by day.
There's no going back and no energy to change. This is who I was and who I am now. As good as it gets with lots of areas for growth–– but no energy to dive into those at the moment.
Through whatever happens, I'm here.
To all my collaborators and story tellers on the project, friends, family, forgive me if I'm quiet and know that the one thing that has carried me through my life is love and connection. Thank you for all of your support in the project and as loved ones. Thanks to all of the generations who are stepping up to increase fluency and loving practice surrounding end of life.
If I haven't shown up well enough, I'm sorry. I did my best.
Maybe this fork in the road will allow me to share some of what I'm going through, but I am officially retired from committing.
This is not about announcing an impending death, but announcing the notice I’ve been given to focus on living everyday. Right this minute I look out over our rolling hills with the funky flowers growing outside our bedroom, the golden hour light ready to hit as the clouds are showing off over the harbor, the magpie couple squabbling at each other, and rolling green hills; I deeply appreciate the beauty. I’m open to the simple majestic moments.
Hopefully I'll have the energy and desire to check in again, but I'm not sure about that. I'm not sure that I won't be around for a long, long time; it's all about what my energetic status will or will not be.
Wishing you all infinite love.
I love you. I’m sorry. Please forgive me. Thank you.
(((Oh, and channeling my friend Dawn, please buy my book.😅 )))
Dearest, dearest Becky - you have written and shared this chapter of your life as only you can. My heart journeyed with your heart through every word and though there is so little I can do or say to ease any of this, I am holding you in love, and in the light of courage, vitality and hope. You are and have always been an inspiration. May you feel deeply guided, supported and held in the ways that are the most life-nurturing to you as you move forward.
Thanks for sharing what must be a difficult and deeply personal time Becky. I know all the work you’ve done in this very space will have equipped you psychospiritually to process it but the physical reality will be day by day. Kia kaha tōku hoa mahi x