Where words fail

notes from a quiet journal

Aphasia is an impairment in a person's ability to comprehend or formulate language because of dysfunction in specific brain regions.

I share with you from a place of vulnerability and honesty today, as always. Please don’t be sorry for me, nor sad for me, be with me, and allow me to share from the heart of lived experience, that it may be of service to you.

We can learn so much from any experience, even those that are the fiercest are accompanied by a fierce Grace.

Those of you who are following my unfolding journey through cognitive impairment and declining cognitive function, thank you for continuing to walk with me here, and in one to one sessions.

It is a blessing to connect with you in these ways. There is still time to do the work — and I am willing if you are.

Whilst it is a time of increasingly failing words, it is also the empty field from which the words arise that must be the resting place of attention.

During this time, I have turned again and again with great gratitude to the late teachings of Ram Das. To be reminded by him how even after a mighty stroke, that left him in a wheelchair, and with aphasia, that those who come seeking answers will find them.

In my own case, having started out with typical language capabilities, but the memory and meaning of each word fading, fading, fading as the hours and days pass.

Spoken, written, and even understanding words and language is becoming more and more challenging. You would not know from reading this, because you can’t see how long I sit to write, correct, autocorrect, and search and search again for each and every letter and word.

Whether writing by keyboard, or by pen, fingers no longer so firmly know their previously unacknowledged yet miraculous ability to find the right letters, the right words, the right spaces, and punctuation. All that had seemed so deeply mapped throughout a lifetime now is left wandering around in the dark, hoping a crack of daylight will appear to light the way.

Thoughts too, before I even get to the words they are made from, are so easily lost in the forest of mind now. You may find me rising from my seat on the sofa, going to my room for something, and before I even enter the doorway, the reason for entering is gone, not even present in my brain long enough to remember, or to forget.

I have been trying various props, methods, and approaches, to be able to catch thoughts that pop up so briefly, yet are important and need retention, if only for a little while. So far, I have tried and failed to use iPhone apps of various kinds, along with a diary, a daily planner, a stack of blank white postcards and business cards, with a pen and a highlighter with them, within arm’s reach.

Yet before my hand reaches the paper, the reason for its journey is already gone.

I can’t begin to tell you how many hours this post has taken to write, between the delays of lost thoughts, lost words, wrong and misspelled words, and poorly mapped keyboard skills for one who could touch type eyes closed for so many years. Almost everything takes a long time now.

Some things return, if I am prepared to sit and wait for them to come around again. It can be minutes, it can be hours, before I remember the word, or it can be not at all.

My latest attempt is a programmed button on my phone, that I simply press and hold to automatically begin a voice note. But even this, due to being a new action, is far from wired in, and needs practice in order to create and record a groove of the process in memory. But only two or three days in, I am yet to remember to use it without a prompt. If it will catch as a new habit, I will be able to share voice notes with you here, and also transcripts of them here and elsewhere.

I gather I might be able to use Siri (on Apple) for this purpose too, but it seems to serve me best to have a physical button I can (hopefully) train my hand to reach for, rather than to remember Siri exists, and how to call Siri up to capture a voice note. There is too long a chain in that for it to work, as I have never used Siri, and it is likely too late to begin.

Time will tell, and I must not just fight this situation, but live it. It is lived experience already. The idea of a fight or resistance to it is to immediately enter a contest between two sides.

It is a lost cause to pursue, better to rest in the ever-unknowing unravelling of it all. This is the most sacred gift, the diamond in the rough, if we are able to glimpse the real through all the nonsense.

Better to be present, allowing, being with, simply being.

Open and present is the way.

The inspiration I have found in Ram Das was how he continued to speak, share, answer questions, and to teach. All with less words, wrapped in pregnant pauses. There was a powerful presence to those words spoken, and to the silence before them and all around them.

This is how I am meeting the unravelling of my brain function, whilst it is still under diagnosis. Yes, there are moments, when I can find no word, or words, or can only find poor facsimiles for the words spoken in my heart.

Life here of late has been quite a ride.

My latest report from the memory clinic has made for hard reading, as they appear to be homing in on what the issues are with my neurological function. Further brain MRIs, tests and assessments are to focus on the frontal lobal region of my brain.

For a writer and one to one speaker, it could easily be seen as a disaster. I won’t deny it is at times intensely challenging.

These past few days I have been meeting the frustration as words fail to reach my lips, many times, today and for the past couple of days, over and over, following a flareup of visceral neuropathy. The meds for that, and the pain itself if I don’t take them, leaves me scratching around for words, like a hungry chicken in the dust.

It’s tiresome, and tiring — already wearing out its welcome at times. I wish to be honest, and as transparent as I can about this experience, that it may serve others in some way. My life has long since been given over to that, it doesn’t change now.

My email footer will need to be rewritten, or deleted. It already is, in so many ways. As for the books that could have been written, poetry collections, guided retreats and more — they appear to be but distant leaves downstream now. But never say never.

Even the trickiest parts are but eddies in the river, when there may yet be rapids.

Life’s mystery always unravelling before, beneath, and within us.

When we speak from vulnerability, we open to possibility.

Where words fail, life begins again.

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If you wish to learn more about it, visit the wikipedia page on aphasia.
Image by Kristina Flour.
Words by Andō.

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