FTLD

Experiencing frontal lobe dementia

I wrote this after a friend had me watch the recent television special regarding Bruce Willis.  As I have aged and lost some degree of cognitive function, particularly as a writer sensitive to any struggles with vocabulary, over the years I have sometimes imagined myself suffering from frontal lobe dementia.  But please know I wrote this out of compassion for others, I myself have not been diagnosed with this devastating disorder.

FTLD

They go in great gusts

Words lost 

Like autumn leaves

to the first winds of winter

So many

Impossible to count

I had to be given the word

Count which I could not remember 

I had to be given the words

Frontotemporal Lobar Degeneration 

I will lose myself 

In little pieces

Some quick, some slow

This they tell me

When I

Lose the word smile

Still will I smile?

Lose the word laugh

Still will I laugh?

Lose the word love

Still will I love?

Lose the word weep

Still will I weep?

Lose the word grieve

Still will I grieve?

Lose the word beauty

Still  will I see beauty?

Lose the word death

Still will I know my fate?

Reviews

[Neha agrawal]

It captures the fragility of memory and identity, yet even in loss. Wonderfully written 😊

[Michael Sun Bear]

Thank you Neha.

[Andrew Golding]

Well written and heartfelt. A powerful poem about loss, but also about the inquisitiveness of life.

A baby enters the world with no vocabulary. Everything is "DA!" Words are introduced that separate experiences, people and things into distinct categories for reference purposes: Mom, chair, hungry, potty. Useful in navigating this material world. But what is the experience before the words? Could it be similar to the one later on, when they are stripped away?

My view (feel free to disagree) is that babies see things closer to how they really are, and that is why they call everything "DA!" with the same level of excitement. They are seeing God in everything, a game of peek-a-boo, where God is right there to be pointed at with glee. Perhaps there's a grace in giving back all those hard learned definitions as little by little, we whittle down to the core of what we all are.

For the record, I am only saying this as a philosophical musing. Contemplating the lived experience of FTLD would be terrifying, and I feel compassion for anyone facing this prognosis. Safe journeys!

[Michael Sun Bear]

Hello Andrew, I quite appreciate your thoughtful response, and we have similar beliefs. As a student of Sufism much of my life, I now strongly believe in the unity of all creation, there is only the One, call it God, the consciousness of the universes, the Creator, whatever. We are temporarily in a state of forgetting, suffering illusion. We came from that one ocean of All and will reawaken there. Your observation about babies rings very true for me. Thanks again.

[John the Baptist]

This is a ghastly disorder, and I think you have captured well the thoughts that must go through the minds of those so diagnosed. Hopefully it will not go this way with you.

[Michael Sun Bear]

Thanks for reading, and for your kind comments.

[Kelly Scheppers]

Even the name of the disorder makes me shiver. I recall my grandmother being diagnosed with Alzheimer's, and dealing with the implications of that, were devastating. But FTLD is nowhere near the same, as I have been reading to learn more about Bruce's condition, myself. I am quite taken by the enormity of the words you have written here, Michael. To say it brought tears to my eyes would be a huge understatement. There's so very much we have to learn about this disorder and other's like it. I hope the day that we do, will soon be dawning. We can only pray!

[Michael Sun Bear]

Kelly, please see the response I just added under Gray’s comments.

[Gray C. Sweet]

This is a beautiful (intended, you'll see) poem with an interesting question: How much of our behaviour is determined by our definitions? Luckily, I think it is a purely natural thing for us to laugh and love, and die of course; but I do wonder about beauty. Beauty is one of those things that no one can really agree on what it means, and it makes me question, if we all lost the word 'beauty', how would we replace it?
That's a bit beside the point, I guess. Getting back to the grit of the poem, I have similar fears. Alzheimer's, dementia, and schizophrenia run in my family, so I've given a lot of thought to what life may be like while I'm forgetting it. I've heard it can be terrifying to live, and I've witnessed how you can lose so many wonderful details of a person. In my experience, however, though they may not remember why, people mostly continue to be themselves, in maybe a more instinctive, confused way.

[Michael Sun Bear]

Wow, I am a bit overwhelmed, but very grateful for all the responses to my poem. I chose to write specifically about frontal lobe dementia as it is very different from Alzheimer’s. One of the first aspects is the person begins fairly rapidly to lose language, before other symptoms typically become apparent. Partners may report the sufferer begins losing interest in personal interests, may stop being affectionate, but ironically the disease also typically causes loss of inhibition which can lead to bizarre new behaviors. As a writer the early overwhelming loss of language fascinates me. Just as smells evoke memories, I would presume cross wiring in the brain creates millions of associations between language, mood, memory, behavior. I do know, because I have seen filmed interviews, some sufferers who are highly reliant on language, for example a minister, a writer, recognize their own disappearing language while still quite cognitive enough to be horrified at their future.

[Gray C. Sweet]

Ah, I was not aware of those differences between the diseases. That breaks my heart and terrifies me, but also gives me a bit more insight into your piece. Thank you.

[jacob erin-cilberto]

I surely would hope if this happened to me, I could still laugh. It has gotten me through so many trials and tribulations in life.
EVen if we don't have these words, we will still have their effect.
j.

[DIVYA]

Hi Michael,
This is a very timely poem, considering that so many people are being diagnosed with dementia. I think it has something to do with the pollutants flooding our environment. Especially plastic. Yet whatever the cause, the thought of losing the mind is scary - usually beginning with forgetfulness then progressing to lose one's way home and then one day forgeting own name. Worse is the realization of one's disease as their being dissolves and dissappears into nothingness.
I really loved your concluding questions. It hit me hard. Especially the last one. If one loses certain basic concepts like death, they become like animals - though some innate instincts like pain, joy, smiling could occur automatically. When they forget breathing - they die. I think, this is one of the saddest ways to die.
Thank you for this poem. It provokes such profound thought and feeling.

[Michael Sun Bear]

Good morning, I really appreciate your really thoughtful response. I am pleased that the poem seems to be eliciting thoughts and feelings as I had hoped.

[DIVYA]

It gives a beautiful glimpse into the dimming world of those with dementia. A subject that evokes much emotion.
You're most welcome.

[Davidgeo]

This is beautiful. I think you should rate this for everyone so it gets more exposure. Everyone should read this. I think a lot of people will identify with this in one way or another. You are not alone my friend.

[Michael Sun Bear]

Thank you for reading and for your kind words. You know, I really debated on the rating. I think you’re right, I will change it.

[Davidgeo]

It was my pleasure. And I'm glad you decided to change the rating. This is one of those topics that doesn't get talked about enough. For obvious reasons. It's quite uncomfortable.

[Vol]

Michael,
The sad part is the mind is dependent on the brain... the good part is, the soul is not....
Vol

[Michael Sun Bear]

Good evening Vol, when I was formally involved with spiritual studies and practices, many years ago, we would remind ourselves and others that we do not have souls, we are souls, only temporarily trapped in these bodies. Sometimes I wonder, when suffering horribly from a terminal disease, if a soul doesn’t sometimes sneak out a little early, before the actual death of the body.

[Thomas W Case]

Tremendous work. Powerful writing.

[Michael Sun Bear]

Thanks Thomas.