16 June 2024

working on exhale


harvest time mostly daily

It seems that I’ve developed a habit of holding my breath. I must remind myself to exhale. I forget what my default setting used to be. It's the strangest thing, chronic illness and its long tail of sidelines and risks. The way it doesn't stay the same despite the same old same old stuff day in and day out, the tediousness of the restrictions and vigilance that the medications dictate. Until there's the day when it's become more shit than before, in comparison. When I realise this has been going on for some time, while I distracted myself with pretending to be healthy and jolly.


trying to stay on top of it

Well, if there's one thing I should have figured out in the last decade, it's that it's rare to get through life in general without any difficult phases. In one form or another, at some point, shit happens along the way and we have to hold our nerve, get our cool, stop ourselves from falling apart. And I am at that point, I think. In all these years of being ill, as long and hard and also as wild and happy as they have been so far, there has never been a day when I am not reminded of being ill. As much as have tried, initially, there's no way to switch it off. It's always something and right now it's a bit more. It is that time again when I need to sit with all the trouble until I come to reach some balance within. Regardless or probably especially because of the surgery looming on the horizon.

very happy with the apricots

The week has been hard, more than I want to admit it, I have battled daily through long hours of cramps and colic determined to not let this rule my day and stop me from doing stuff. But Thursday was the day, I packed it in and have since stayed home, no walk, no cycle, no gardening. Instead, I sleep in the afternoons and otherwise sit on the patio doing nothing at all. When it comes to food, I pick something from the slim list of tolerables with grim determination just to get some energy, protein, fibre. The nutritionist declared to be at the end of wisdom, handed me lists of recipes for bland soups and variations of watery porridge. Her wisdom was good nevertheless and I am grateful. On Wednesday, I handed over all my medical reports and stuff to the next set of surgeons who will now deliberate options prior to next week's scheduled appointment. Sounds great but I fear it will turn out that on Tuesday, some exhausted junior doctor will quickly glance through the file and ask the same questions again and I will reply with the same old list of concerns and then there will be that moment of irritation when I cite the medical research papers on the risks of surgery option 1, 2 and 3 in patients on immune suppression. I usually smile apologetically when they realise that I am a patient with a rare autoimmune disease, one they have heard about maybe once during training and then I usually and briefly explain that due to my long work experience I have access to and experience in checking and even interpreting relevant data. But still, there will be that sigh and oh shit etc.

the front, there have been complaints about it being too much of a jungle

And yet, and yet and yet. The garden is bliss, I walk around and pick s small handful of berries. Wonderful people come and sit with me, bringing fresh cherries, flowers, laughter and talk. I nibbled some cherries, too many, and pay the price but it was worth it.

I swear when this is over and sorted, I'll design the ultimate luxury food book, one that celebrate all the delicious, spicy, sweet, fatty, rich dishes I can only dream of ever eating again.


Hold hard this infirmity.
It defines you. You are old.
Now fix yourself in summer,
In thickets of ripe berries,
And venture toward the ridge
Where you were born. Await there
The setting sun. Be alive
To that old conflagration
One more time. Mortality
Is your shadow and your shade.
Translate yourself to spirit;
Be present on your journey.
Keep to the trees and waters.
Be the singing of the soil.

N. Scott Momaday


Pixie said...

Each age brings some new thing to survive, puberty, childbirth and child rearing, menopause, chronic illness, aging, none of it easy.

You must drive doctors crazy, they seem to often prefer ignorance over knowledge. I hope that they can help you. Sending hugs.

am said...

Although your body is chronically ill, I don't sense that at all in your rigorously honest voice, your spirit. Until I finished reading your post, I didn't realize I was holding my breath as I listened intently to all you had to say today in terms of your medical situation. Only after reading M. Scott Momaday's poem did I exhale. A lifetime of learning how to breathe. Thank you for the lovely garden photos. Sending love always to you and R.

Here's something for you, inspired in part by your spirit of encouragement:


Looking forward to the ultimate luxury food book. May you eat well again, Sabine.

ellen abbott said...

I'm trying to emulate you. being here now, being present now, enjoying nature and this beautiful planet one day at a time, though it is too hot now to sit out in the day. tomorrow I finally meet with the neurosurgeon and get the angiogram scheduled and find out if this thing is going to kill me and when it might happen or not, if it can be repaired or not. long list of questions hopefully answered tomorrow but no conclusion until the procedure is done. I've stopped searching online for answers, too scary.

you are so brave. and that is what my brother-in-law said to me Saturday on the phone, he admires how I am facing this. I don't feel especially brave but what else can I do? dissolving into a puddle of woe won't help me.

I hope this next round of appointments and whatever surgery option is chosen give you relief. I think doctors are surprised when they have a patient that is intelligent and knowledgeable about their condition.

Colette said...

It's all so much. As always, I hope for the best for you. I am humbled by your ability to think and feel and appreciate and describe. As for the front, I kind of like a jungle. However, that espaliered apricot knocks me out.

Steve Reed said...

What a beautiful poem. I think your front garden looks perfect and not at all too jungly. (But you know what my garden looks like!) At the end of the day, enjoying life's small pleasures is what sustains most of us.

37paddington said...

Breathe, my friend. We keep on keeping on. You inspire me.

Barbara Rogers said...

Thanks for the reminder that breath has two parts. In-spire, inhale, inspiration. Exhale, release toxins, relaxation.
So glad that you have knowledge of your conditions, and can ably mention them when new kid on the ward just glances through the history. I actually was treated the last time I was in ER (and not admitted) without anyone acknowledging I had Bronchietisis. It wasn't on the discharge summary at all.
May all your encounters with medical personnel be intelligent (I mean it) and with your needs as priority.

Ms. Moon said...

A jungle can be a fine and noble things.
Suffering is NOT fine and noble and I wish with all of my heart that it was not a part of your life so deeply and so regularly. If our care and concern out here in your blog community could cure, you would be well. I am sorry it does not work that way. So we send love.