[Video] Poetry as Medicine Cafe – July 2022

Open book and cup herbal tea on background of foggy mountain forest on wooden rustic bench. Wellness holiday, vacation, healthy rest time in nature Rhodope mountains, Bulgaria

Two years ago, a group of Davis Phinney Foundation Ambassadors came together for a Poetry as Medicine workshop with Wayne Gilbert. That one-hour session turned into a monthly poetry jam that has resulted in far more than words on a page.

At our second annual Poetry as Medicine Cafe, these poets shared the work they’ve developed over the past few years. We hope you’ll be inspired by what they’ve learned, what they’ve written, and how poetry has become medicine to help them live well with Parkinson’s.

You can read the transcript below or download it here.

 Wayne Gilbert (Poet/Teacher for Metaphor Medicine): 

Hello everyone. My name is Wayne Gilbert. I am a poet and the facilitator/leader of this wonderful group of poets, mostly ambassadors from the Davis Phinney Foundation and probably a couple of other faces you might recognize from the Davis Phinney Foundation, as well. We’ve been meeting together for two full years now with only a few changes in the members of the group, very few. There are couple of people who couldn’t be here tonight. Oh, there’s Tom, good, Tom made it. The plan for this evening is for, that we’ll, we’re going to do two rounds. Each poet will read one or two poems in each round. We’ll have a little tiny turnaround in the middle. But let me tell you a little bit about why poetry, especially regarding Parkinson’s. A lot of people sometimes ask me, “what does poetry have to do with Parkinson’s?” And for me personally, and I think for increasingly a few others, it has everything to do with it. I call it metaphor and medicine. However, be forewarned, poetry is not for everyone. The cowardly, devious deniers and liars cannot benefit from it. Poetry only works for those brave, compassionate, and impertinent enough to acknowledge name and accept the hardest truths, especially about themselves. 

I have another very short poem, called “<parkie poet>”. 

If a voice drops breaks falls silent 

And no one is there to hear, 

Did the voice ever make a sound? 

To whom does its absence belong? 

Davis Phinney (Founder, Davis Phinney Foundation): 

I love that. 

Wayne Gilbert: 

So, poetry is, in part, about voice, about having your own voice and using your own voice. That’s kind of where a lot of the medicine comes from. In Parkinson’s, as you all probably know, are all too aware of, one of the things that often goes or diminishes is literally the human voice. But in poetry, there is no mute. There is no diminishment. There is no loss of voice. It’s the opportunity to express what is deepest within you and share with others. So, let’s get right down to it. Our rule, when we meet, is always, to put it crudely, shut up and read. By that, we mean there are no big, long explanations. There’s no introduction to the poems. We read the poems, we look up and then we applaud. This is the way we applaud because zoom doesn’t like all this noise. This is applause in American Sign Language. Our first poet this evening is from Ontario, our Canadian and good friend who is very active in the Canadian Parkinson’s community, as well as our own, Joe van Koeverden, Joe. 

Joe van Koeverden (Ambassador, Davis Phinney Foundation and Parkinson Canada): 

Yeah. I’m going to start with “Make a Mark with Your Spark”. 

Living in a material domain 

We judge each day, by what we do. 

Marking the passing of time too. 

Thoughts of who we are, our refrain 

Are we spirit or are we beast? 

Will we war or together feast? 

Can we share our earth today? 

Can we hold our enemies at bay? 

In our bodies we feel autonomous. 

But when we breath, we breath the same air. 

Its only in space we need to possess, 

on earth the O2 we need to share. 

Are we alone, do others exist? 

Have they watched us, or even more? 

Do they see how the “gods” we adore? 

Will they come in peace, or on war insist? 

As we pass from the material sphere, 

We let go of everything, matter is gone. 

No need for time as everything is one. 

Past, present and future all seem so near. 

Will questions be answered, even our mold? 

As was that what we were told? 

What will it be like, being altogether? 

As spirits merging for the better? 

Don’t hold life too dear my friend, 

As your future may be around the next bend. 

But don’t waste your spark, leave a mark 

Then we can say we lived not in the dark. 

So, I go right on the next one? 

Wayne Gilbert: 

Yes, Joe, please. Go right ahead. 

Joe van Koeverden: 

Okay. “Pay it Forward.” 

It all seemed normal, 

Slowing down with age. 

Gravity pulling at my body 

to make the ground a closer friend 

ready to meet in a moment’s notice! 

But I push back again. 

Refuse to meet at his level 

Walking straight, poles in hands 

Taking the trail till the cedars end 

working through the stiffness and the pain. 

I will push back 

today, as I can for now 

Not knowing what tomorrow 

will hold, or how I will respond. 

I do my best, forget the rest till morn 

And as the morn revives 

Rise to meet my daily challenges 

To make do with what there is today 

Being helpful and supportive in any way. 

It may not be my best, but it is all I have left. 

Pay it forward 

In selfless acts of kindness. 

For you too may find that one day 

You can no longer walk alone on your trail 

Needing the same support, you freely gave away. 

Thank you. 

Wayne Gilbert: 

Joe. Thank you so much. Wonderful, wonderful. Joe has quite a website. You should free feel free to check out sometime. He has some poems there among other things. You can see his name, I think, below, his name and find his website that way. Thanks Joe. 

Joe van Koeverden: 

Thanks Wayne. 

Wayne Gilbert: 

I’m going to introduce the next person. Some of you might already know him. And he joined our group about a year ago now, I think, and has been bringing poems every month. Davis Phinney. 

Davis Phinney: 

Thank you, Wayne. This is called “The Weight of Yourself” and it was written in June 2021 and it’s my first entry as a poet. 

A dream remembered in fragments, an old film run through a family projector, scratchy, uncertain, but it is me, sliding on snow, going with gravity for once. Flowing, floating and in control of my body. I am in control of my body, a rare and beautiful sensation, a luxury anymore. The province solely of dreams, dopamine deficiency, stripping away my abilities, like a tree removed of bark leaving me vulnerable, weak, exposed. And yet in this dream, I luxuriate in the waiting and unweighting the absolute joy of attaining a certain lightness of being, if only for an elusive few moments. But in those moments, I am free like a hawk flinging itself up, up onto a soaring thermal, untethered, unrestricted filled with purpose and grace, unbound. The film runs its course, preview over, real looping round and round as the grainy picture grows big, still savoring the sensation, eyes open and testing to feel the weight of myself. Not too heavy. Yeah. 

Wayne Gilbert: 

Yeah, yeah. I hope members of our audience are noticing already that one of the ways poetry really makes a difference in our lives, especially our inner lives, I think, is this way of facing some difficulty, some honest appraisal of what’s happening to me. And as we reach down and grab that, something comes with it in the poem, usually by the end or somewhere near the end, that gives something back, something for us to take away from that acknowledgement, which might be painful. Well, our next poet isn’t here yet. I hope. Oh, there she is. 

Jan Grimes (Ambassador, Davis Phinney Foundation): 

Y’all, we have had some- 

Wayne Gilbert: 

Okay. That’s alright. Jan, take your time. We’ll go on ahead. Okay? 

Jan Grimes: 

Please. Yes. Thank you. I’ll be right there. 

Wayne Gilbert: 

Here. Okay. So, I’m going to invite Connie to read if she would. Connie Carpenter Phinney. Connie’s been for, with the group from the very beginning. And yeah, go ahead, Connie. 

Connie Carpenter Phinney (Co-Founder, Davis Phinney Foundation): 

I am the token caregiver in the group and an avid poet, I would say my whole life, so this has been a wonderful experience for me. Thank you all of you guys for letting me fill that role for you. This is called “Nothing Left” and I think it was a prompt based on forgiveness. 

Nothing Left 

Nothing Left. In the luminous west, time flies, pulling contrails into the night, like dreams into liminal spaces, gravity anchors, feet to cold earth, bodily remains, Sol in the sky, dwindling, light lasting eternal. Awe, nothing to forgive, nothing left to forget. 

Wayne Gilbert: 

Thank you, Connie. 

Connie Carpenter Phinney: 

Thank you. 

Wayne Gilbert: 

You could see also poetry is not, does not require one length or another. Some poems are very short. Some poems are longer. Some poems are really long. It all depends on what it is you’re trying to say and to whom. Well, let’s hear from our next poet. Tom Constantino joined us just a few months ago and we’re really happy to have Tom with us and Tom’s going to read, which one are you going to read first, Tom? 

Tom Cosentino (Ambassador, Davis Phinney Foundation): 

I’d like to read “Stranger,” if I may. 

Wayne Gilbert: 

Great. 

Tom Cosentino: 

Okay. Let me pull that up. 

A stranger is. a friend you have not made yet. 

6 1/2 years ago Parkinson’s was a stranger to me. 

He Introduced himself rather subtly at first 

it was just a slight tremor in my left arm. 

As the days turn into weeks and weeks turned into years 

he came less of a stranger. 

He became my friend. As such with any friendship 

I welcome him with open arms. 

Today I take him with me wherever I go. 

I find in life it is easy to travel with a friend than a stranger. 

Wayne Gilbert: 

Have you got another one right now? 

Tom Cosentino: 

Yeah, its “Basic Training”. That was one of the last ones I wrote. I kind of like it. So “Basic Training.” 

Here We Go Again 

Same old stuff again 

Marching down the avenue … 

Stand in this line 

get a haircut 

stand in this line 

get a pair of boots 

stand in this line 

get your fatigues 

forget who you were 

forget where you came from 

We are Alpha 

Mighty Mighty Alpha 

We are not many 

we are one. 

weekend pass 

Sunday morning 

sun is slowly rising 

watching the dew 

turn on radio 

hear Casey Kasem’s voice 

The Commodores playing 

Easy, easy like Sunday morning. 

I smiled to myself 

at this moment I am not Alpha 

I am just me. 

Wayne Gilbert: 

I’m just me. Poetry is music. Poetry comes with music. Poetry comes like music. It’s a wonderfully musical medium. And it finds the music in language and in our emotions and even 

in ideas for that matter. And I think you could hear some in Tom’s piece there. Amy, you ready down there? Amy Carlson’s in. 

Amy Carlson (Ambassador, Davis Phinney Foundation): 

Hi! 

Wayne Gilbert: 

Amy Carlson’s in California. She has just put the top up on her convertible Volkswagen where she is, Volkswagen bug. And I think she’s sitting at this beautiful place above LA. And she’s going to read to us from there, Amy? 

Amy Carlson: 

I do, I have a beautiful view, but I had to put the top up because my phone was overheating. So yeah. All right. So here we go. This poem is called, “Isn’t it perfect?” No, it’s not called that. It’s called, “It isn’t perfect.” Okay. 

A hole, a joke, a crossroads 

The door doesn’t fit the frame 

The path wobbles 

The air is wicked 

The light is so bright 

my hands are so cold and the ice is hot 

Her breath pops 

One corner sinks, one door is missing, there are leaves in the bed 

And l am left out in the rain 

The xes are orange 

The trees will go 

The water is steel 

We keep the keys on the seat 

There is a pile of bark and I should leave 

How do you reach the end? 

Wayne Gilbert: 

Whoa. Wow. How indeed. Nice, nice question at the end. Thank you, Amy. Do you have another one for this round or one, going to save it for the next? 

Amy Carlson: 

I should say it for the next because I’ve got one for each round, so. 

Wayne Gilbert: 

Perfect. Thank you. Jan, are you ready to go? 

Jan Grimes: 

Well, we have had some interesting things happen and it’s all my fault. I fear. And this first selection may not be at the level, technically it needs to be, I mean, sound wise, but we’re going to try give it a try and I will hopefully be better when my second time comes around. 

Wayne Gilbert: 

Is this the desert sky poem? 

Jan Grimes: 

It is indeed. 

Wayne Gilbert: 

Okay. So, there we go. Now, everyone, this is the, may I say a quick word, Jan, before you start? 

Jan Grimes: 

Please, these are your poems. 

Wayne Gilbert: 

I wrote this poem and submitted it to the group. And as I recall, Jan was one of the first people to say, “what is that?” Or something to that effect. She said, “I don’t even know how to read that.” And I said, yeah, “that’s the idea,” or something equally wise and insightful. And we began to talk about it and kind of play with it. And she took it as a challenge. And so, we spent some time on the side working with it and she created a piece where she basically reads my poem the way she reads my poem with music that she matched to the poem. So, Jan, take it away. 

Jan Grimes: 

Oh, I’m just going to tell you that this first part of the poem, Desert Sky the music was composed by my husband with my help and input. And the second half is actually a nocturne by the composer Francis Poulenc. And it’s called Bal fantome, which means ghost ball. I think it’s the music fits the rest of Wayne’s poem really beautifully. Okay. Can you hear me so far? 

Wayne Gilbert: 

So far? You’re good. 

Jan Grimes: 

Okay. Here we go. This is “Desert Sky”. 

my body cannot i am 

will-less 

rise 

my 

only this 

heavy 

stone-head 

on the hard-dark 

base- 

line 

ache 

re- 

ceding 

ex- nihilo a 

light 

plays 

a little night- 

blues off 

the graphite 

spills 

whitegreys 

splat-ter-dabs 

my body 

releases/my 

tension un- 

tombs 

long ing 

reach es 

lean/s 

toward 

relief 

Did any of that come through? 

Wayne Gilbert: 

Yes, it did. Yes, it did not as clearly as, as when we rehearsed or when you rehearse, but it, you know, I, sometimes I think, I think technology is a lot like Parkinson’s, some days things are working pretty well, never a hundred percent perfect by any means. And some days they’re working, eh, kind of well, and some days they just downright, well, don’t work at all. So, this was not the, the latter. It just, it wasn’t, it wasn’t as clear as it might have been Jan, but it was still lovely. And we- 

Jan Grimes: 

Could you hear the words? 

Wayne Gilbert: 

I’m glad we put the poem up. 

Jan Grimes: 

Oh, good. 

Wayne Gilbert: 

Yes. Thank you so much. 

Jan Grimes: 

You’re welcome. 

Wayne Gilbert: 

This technology, I’ve had occasion to reflect on it a lot. As a recluse, especially a sort of hermit monk in my little cave above the city of Denver and zoom. This is a way to keep in touch, to keep engaged. It’s not the same as if we were sitting beside the piano, listening to Jan play, and listening to her be on the mic. It’s not the same as if we were literally sitting in the same venue together where we could hug or at least fist bump or whatever. But on the other hand, this group is amazing. I didn’t mention, Jan is in Louisiana where she was on the faculty of LSU. And Tom is in Maryland and- 

Jan Grimes: 

We are a diverse group if nothing else, right? 

Wayne Gilbert: 

We are from all around the country and yes, I love that fact. We would not be together but for that, and that’s right. In two years, we have become truly a community and, and the best deepest sense of that word we have. And that’s a miracle. So, I celebrate that. So, next poet Joe O. Joe O’Connor lives in Massachusetts, but he happens to be in Maine where apparently the internet connections are, shall we say, problematic? So, he’s with us on his phone and he’s going to read on his phone, and you could look at his mug there while he reads. Joe? 

Joe O’Connor (Ambassador, Davis Phinney Foundation): 

Parkinson’s is like an elevator ride. Well, the bumps and jumps and floors and landings. 

Picture an elevator 

since there arent any floor numbers in any area 

you dont know what floor you got on at 

the bottom of the section of floor is called 

early onset 

the middle? area of floors is called 

normal time 

but what about this elevator is “normal” 

glancing at the top getting on area 

you see the words “late onset” 

I got on at “normal time” 

I ask the operator on what floor I am getting off 

some of those floors look pretty far away 

no response is returned – seems ominous 

the elevator jerks upward 

take note this is no easy ride – there will be a lot of bumps 

the doors open “at pity party” 

there seems to be a lot of crying around a Christmas tree 

then i realize this is my diagnosis date – right around Christmas 

like a modern Scrooge – i wish to see no more 

the silent operator yanks me back in 

the elevator jerks upward again 

the doors open at first fall 

i find myself running with your running buddy when suddenly 

my legs tangle and down i go 

after a few stiches the operator pulls me back in 

many stops go by 

second fall 

third fall 

early retirement 

support group 

and so many clinical trial stops 47 as of right now 

up the elevator continues its journey 

the doors open at “DPF Ambassador” 

this is such a fun place 

some of the sub floors you see are: 

Leadership conference 

Poetry group 

pen pals 

storming the capital 

and sooo many new friends names to count them all would be impossible 

but all of us reach out to each other and share with each other 

it is a warm feeling place 

I love to linger there 

the next floor visited is called praise 

here we find that people really find value in what I do 

strangely I find myself reluctant to step out 

but with a rare smile the operator pushes me out 

and I hear so many thanks and accolades 

that my ears really echo with compliments 

still in the elevator the operator smiles as he looks on 

and then he beckons me to return 

upward the elevator rises 

the next floor is named chorus 

on this floor 

you are invited join even if “you cant carry a tune in a bag” 

a fun floor 

one I hope to continue to visit 

I notice several sub -floors arranged by visit dates 

good – it looks like many visits 

but once the operator beckons for you to leave 

Wayne Gilbert: 

Thank you, Joe. Thank you. See, that’s the other thing that’s amazing about this place, that we’re this screen we’re on, is you can be here without actually being here. Yeah, strange here we are. Well, our next poet is in Washington state. Wendy Miller, Wendy, take it away. 

Wendy Miller (Ambassador, Davis Phinney Foundation): 

Thank you. This is called “Blurt, Memory”. 

“Pick a memory, any memory.” 

“But I don’t have a good memory.” 

I didn’t say it had to be a GOOD memory.” 

“No, that’s not what I mean.” 

“I know what you mean.” 

“Just remember something at random…” 

Okay, tiger swallowtail 

Again 

Lobster Cantonese 

Another 

My mother conquering her agoraphobia to try to pick me up from elementary school in her bathrobe. 

See what I mean? 

As I recounted the prompt to him, he made a Nabokov joke: “Speak, Memory.” 

Then “Squeal, Memory.” 

Then “Blurt, Memory.” 

See what I mean? 

You have no idea what you mean… 

The memory of visiting the birthplace of Hieronymus Bosch showed up 

As a dream 

But when I woke 

I wasn’t convinced it was a REAL memory 

Because what in the world were a music festival and a bunch of Bohos on an intercity train 

Doing in the artist’s memory? 

But he confirmed it. 

Blurt, Memory. 

Wayne Gilbert: 

Thank you, Wendy. Thank you. I hope you can also begin to see, dear audience, listeners, viewers, that the range of subject matter here is wide. And I do send a prompt out each and every month, but that doesn’t mean that everyone uses it because often a poet has a prompt of his or her own and goes with that, which is as it should be. Everyone’s a poet by nature. I know there are many of you thinking right now that can’t be certainly not me. Yes. it’s as much a part of you as the child in you and whatever your capacity to play might be as an adult is equal to the capacity to be a poet because those two are strongly linked, play and poetry. Most of the people in this group didn’t write poetry before they came, we came together and every single poet here I can tell you is writing work now that they would not have dared think they were capable in many cases two years ago. It’s true. 

And it’s awesome to see. I don’t believe for a minute that everyone, that not everyone could be a poet. Everyone is already, it isn’t about becoming one. You just have to kind of find that voice within you. I’ll share a little piece here. It’s a kind of it, it’s a Parkie blues. I’m, it’s called “Some mornings.” 

some mornings i wake up 

some morning i never do 

some days i get in gear 

some days i never do 

some days i feel like dancing 

some days i can’t remember how 

today i waited and waited 

lingering deep under covers 

i wanted to know before i moved 

which way i was gonna go 

i scanned my body’s surface 

took a deep deep dive below 

just to take a reading 

how it’s gonna go 

i heard the blues come back to me 

the blues are always playing 

i heard guitar organ chords 

the drums kick up a beat the bass 

finally the voice lowdown said 

tonight, today, tonight might be the day, 

tonight might be the night 

you find your way back home, back home 

today you just might find the way 

back home 

So get up and go get up and go. Get up and go. Okay, take your meds first. 

Jan Grimes 

I loved it. Who needs accompaniment when you can do that? 

Wayne Gilbert: 

I have a whole band in here. 

Speaker 12: 

Yes, you do. Yes, you do. 

Wayne Gilbert: 

And they all just want to play. Great. Well, that’s the end of our first round and we’re going to circle around now back and give everyone one more chance to read from their poems again. Yeah, I think let’s take one second here and just sort of give us all, give everybody who’s already read a hand. I know we, yeah, that’s good. All right. Thank you. And here we go with round two, thank you all for listening and checking in here. We really appreciate it. Writing a poem is very meaningful to the poet and can be a real release, a real kind of very real medicine. On the other hand, it’s so nice for it to be heard. Wendy Miller is going to open our second round will Wendy. 

Wendy Miller: 

This poem is called “Trope.” 

Trope. 

Nope. 

To false hope. 

Is there real hope? 

Maybe nope. 

It’s not dope. 

This inability sometimes to cope. 

I struggle to grope 

for hope. 

Formally through dope, 

A slippery and enjoyable slope, 

until they convert it into a noose my rope 

Of hope through dope 

To one big nope. 

I’d like to elope 

With hope 

And take a big bath in its sexy soap. 

Bubbles of hope. 

Lather of hope. 

Soap on a rope. 

Bring me a rope 

To tie up hope 

To help me cope 

To minimize the scope 

Of my lifetime of cynical rejection. 

Wayne Gilbert: 

Yeah. Thank you. I think most of us have a complicated relationship with hope. And you put it beautifully. Thank you, Wendy. Joe O., would you go, would you look next please? In the second round? 

Joe O’Connor: 

Okay. This is a very different poem. It’s about a church. 

Once upon a time 

there was a small village 

a small village called oakdale 

it stretched out as farmlands and a modest town center in the nashua river valley 

the mighty nashua river runs through the center of town 

with fields of apples and corn stretching off into the distance 

the protestant and catholic churches stand on the high ground 

an idyllic sleepy town 

40 miles to the east 

and the old wooden stave pipes leaked 

and narrowed by calcification as water coursed through 

but Boston needs water 

this small village will have to go 

Boston needs water 

the sprawl of the city of Boston continues to grow 

Damming rivers will create a large reservoir 

Many rivers to dam 

Wayne Gilbert: 

Thank you, Joe. Many waters, many waters to dance. 

Joe O’Connor: 

Ah, man, I was losing it, sorry, folks. 

Wayne Gilbert: 

What happened? 

Joe O’Connor: 

I lost it in the middle of it. 

Wayne Gilbert: 

I thought so. 

Joe O’Connor: 

Lost the connection. 

Wayne Gilbert: 

Well start. 

Joe O’Connor: 

What was the last thing, when you last, where’d you last hear? 

Wayne Gilbert: 

Last thing I heard was about being in the middle of the water 

Joe O’Connor: 

Oh, good grief. Wow. 

Wayne Gilbert: 

Why don’t you start again now? 

Joe O’Connor: 

fields of apples and corn stretching off into the distance 

the protestant and catholic churches stand on the high ground 

an idyllic sleepy town 

40 miles to the east 

and the old wooden stave pipes leaked 

and narrowed by calcification as water coursed through 

but Boston needs water 

this small village will have to go 

Boston needs water 

the sprawl of the city of Boston continues to grow 

Damming rivers will create a large reservoir 

Many rivers to dam 

Dam the Merrimack? 

no the prosperous mill town of Lowell must be protected 

Dam the Charles? 

what and drown Harvard? 

no 

Whatever 

Remember needs 

Boston water 

eyes turned out toward to Wachusett region 

the Nashua winds through the valleys 

the sleepy towns Sterling, West Boylston, Boylston and Oakdale 

or the burgeoning town of Clinton – to the mills water equals power 

the dam would provide more jobs, more settlements 

the most impacted town would be Oakdale 

Dam Oakdale – a little town with nothing special 

or is it 

Damn Oakdale – a sore spot in urban planning 

back in Oakdale 

what is urban planning? 

we are just a small village 

we will be okay here 

Meanwhile 

Boston needs water 

where to build the dam 

big mills in Clinton 

more power from faster water and don’t forget 

Boston needs water 

build the dam and take some land 

25% of land from sterling 

33% from Boylston and west 

and Oakdale? 

just take it – ALL of it! 

Remember needs 

Boston water 

that was more than 100 years ago 

Oakdale is gone save the old stone church 

the streets and houses are gone 

the fields where farming once was king 

now flooded and gone deep underwater 

a whole town gone but remember needs 

Boston water 

Wayne Gilbert: 

Whoa. Yeah. Boston needs water. So does Denver. I guess most of us do. And that’s really a poem about the lengths we will go, I guess, to get it. Thank you, Joe, very much. Tom, would you go next? All right. 

Tom Cosentino: 

Okay. Now we’re un-muted. This one is called “Tribute to Larry.” This was, this I wrote just a couple weeks ago. Let me pull it. I’m sorry, a moment. 

I lost a friend on Sunday 

My boxing buddy 

First came Parkinson’s 

Then Dementia 

Finally, COVID 

His wife said to me 

Knowing that he is no longer suffering 

brings us all comfort. 

This is Parkinson’s 

It slowly takes your body. 

It has no compassion 

It shows no mercy 

It takes what it wants 

First my biceps 

Then muscle rigidity 

Then Stiffness 

Now my memory’s 

But we fight 

Get up – find your balance 

Do yoga 

Ride your bike 

Hitting the heavy bag 

War of attrition 

Every day a battle 

PD may win the battle 

But I will win the war. 

All I ask is my body be 21 again 

Simple words 

You have Parkinson’s 

Knowing that he is no longer suffering brings us all comfort. 

This is my body for better or worse. 

That was my tribute to Larry. 

Jan Grimes: 

Beautiful. 

Wayne Gilbert: 

Thank you, Tom. Thank you very much. That’s the other thing obviously about poetry, I think, is that it’s actually one of the traditional ways human beings have expressed grief, have shared 

grief particularly. And it’s a way most of us can be vulnerable in an appropriate, meaningful way. Thanks Tom, I appreciate it very much. 

Tom Cosentino: 

You’re very welcome. 

Wayne Gilbert: 

Connie, would you read next please? 

Connie Carpenter Phinney: 

Sure, of course. This is a little bit of an origin story for me. It’s called “First Act” by Connie Carpenter Phinney. 

Once upon a time in a frozen far away land lived a ruby-haired, freckle-faced girl, dressed like a boy in a big brick house with her three boisterous brothers who kicked the can, captured the flag, and played tag deep into the fairy land nights. In winter, the slippery ice field, transformed by a spotlight, shined on children in motion noses, running legs, pumping arms flailing, pucks flying, all skating. In hot humid summers, lightning bugs flickered, mosquitos bit and buzzed, bony knees scraped hard against concrete and crab grass from those fertile fields, I sprang, eager to outrun outplay and conquer my world. Who wouldn’t? 

Connie Carpenter Phinney: 

Yeah. Yeah. Thank you. 

Wayne Gilbert: 

Yeah. 

Connie Carpenter Phinney: 

Thank you. 

Wayne Gilbert: 

Another time and place and wonderful way of being there. Thank you, Connie so much. 

Connie Carpenter Phinney: 

Thanks for being there with me. 

Wayne Gilbert: 

Yeah. Yes, Amy, would you give us another poem from the bug? 

Amy Carlson: 

I will poem. Another poem from the bug, this one’s called “Insomnia”. 

Pain 

Fighting for sleep 

Awake 

Sweating 

Swearing 

Pain like an ache 

Aching 

Eating 

Toast with cranberries and walnuts 

Adjust the bed 

Adjust the pillows 

Covers off, covers on 

Why won’t my muscles relax? 

Pain 

Aching 

Sweating 

Swearing 

Roll 

Hear something 

It’s the dog 

It’s a voice 

No, it’s the dog. 

Why won’t my muscles relax? 

It’s a voice. 

No, it’s the dog. 

Pain 

Aching 

Roll 

Thirsty 

Drink 

I have to pee 

No, I don’t 

Maybe I should 

Go pee 

Ugh 

More toast? 

No 

It’s a voice. 

No, it’s the dog. 

Roll 

Put the phone down 

Distract 

Breathe 

Relax 

Why won’t sleep 

Sleep 

More melatonin? 

No 

Need to be awake tomorrow. 

Sleep 

Legs heavy 

Ears ring 

Eyes sing with need 

Closed eyes blossom color 

Why. Sleep. 

Please 

Pain 

Heaviness 

Ping 

Awake 

Wayne Gilbert: 

I think you can see you being the audience. I think you can see from when I said poetry isn’t for everyone in the sense that you, you have to be willing to, to look sometimes at and, and deal sometimes with certain truths that aren’t necessarily easy. Thank you, Amy, for sharing the sound of the dog in the middle of the night. Oh, that hound. Jan, are you ready to oh, unmute. 

Jan Grimes: 

Yep. Actually, I’m going to have “Brooms” wait because the problem initially was, I could not get my microphone turned on at the very beginning, which was the whole problem. So, I am going to put that one aside and instead give you “Just for Me.” Okay? 

Wayne Gilbert: 

Perfect. 

Jan Grimes: 

This is called “Just for Me.” 

It’s vacation time in Georgia 

with my in-laws to be. 

I’m on my best behavior 

‘Cause I’m a Yankee, you see. 

It’s night and the A frame stands alone in the dark. 

No sounds but, oh, the aromas! 

Dried leaves and overripened fruit 

Yummy potpourri for my well-being. 

My suitor’s family in proper manner 

Assigned the nights quarters; I got the couch. 

Not disappointed as fatigue was in charge, 

I dutifully bunked down, without as much as a smooch. 

Dark was the air around me, quiet and still 

And relegated to the couch against my will. 

But I was not alone, oh no, not alone 

For in the pitch black was the incessant buzzing of a horse fly. 

Now lonely-hearted AND annoyed 

My night was certain to be deployed 

to the whims and noisy soaring 

enjoyed by this very busy fly. 

Just when thought I would go mad, 

I cannot take one more moment of this NOISE, 

I heard the most satisfying sound ever in my young life. 

Twas a clear and perfect “PLINK”!! 

The fly had flown headlong and full speed 

into the glass and knocked himself out! 

What a .beautiful and perfect sound. 

I laughed aloud. And wanted to shout! 

Nothing did I hear after that, except the sound of my brain 

Shifting down to Neutral and then coasting into slumberland. 

I so wanted to share that moment. 

But, alas, it was just for me. 

Wayne Gilbert: 

I laugh. Yes. It was 

Jan Grimes: 

Laugh. 

Wayne Gilbert: 

I love it. Thank you. 

Jan Grimes: 

Sorry. By the way. based on 

Wayne Gilbert: 

Well, there’s no, you know the thing about being a poet is there’s no obligation to tell the facts. You just have to tell the truth. 

Jan Grimes: 

Yeah. 

Wayne Gilbert: 

They two, those are not always equivalent and I’m not talking politics here. I’m talking philosophically speaking. 

Jan Grimes: 

Indeed. Indeed. 

Wayne Gilbert: 

Thank you so much, Jan. This is strange for us in a way, because usually when one of us reads a poem, we take a few minutes to talk about it before we go to the next poem. So, to go from poem to poem feels a little bit strange to us, I should say, but I hope I hope the audience is enjoying it. 

Jan Grimes: 

Oh, I hope so, too. 

Wayne Gilbert: 

Next Davis, will you share your next poem with us please? 

Davis Phinney: 

This is called “She is Gone” and it’s for our friend, Diane. 

The wind cloth Crow circle. Sweet, sad word, spiral heaven, grief pools, uncomfortably comfortably under unsteady feet, heart fracture, filtering collective resonance, heart fracture, filtering collective re bitter tears, streak wounded faces. Look up, look up Hawk, swirling away until she is gone. 

Wayne Gilbert: 

Thank you, Davis. Thank you so much. You’ll notice, I hope, too, that poems don’t have a single form. There are many, many forms for poems, some rhyme, some don’t some rhyme a time or two, but no more. Some are all over the page. Some are all over the place. Some are very tightly focused. Some are quite wild. Joe, will you bring us home from the end of round two here and share your final poem or poems with us please? 

Joe van Koeverden: 

Yeah, okay. I think I’m ready. This one is a response to Martin Pickard, a friend from UK who put out a request for poems that are on the theme of out of the blue. So, this is “Out of the Blue” by Joe Vancouver. 

It all seemed surreal 

I had just stopped for a meal 

Was on my way back to the highway 

When two cars going my way 

Out of the blue, collided in the lane 

beside me! It all seemed insane, 

I put my car in park, 

And rushed over before a spark 

Would light the car on fire 

And make situation look dire 

Especially for the guy, in back, stuck 

trying to get out, with no luck. 

Out of the blue came a man 

With a fire extinguisher he ran. 

He doused the car like a pro 

Yelling at me to give it a go. 

I reached into the car grabbing the guy 

had no alternative, or he could die. 

We locked our hands in a final grasp. 

I tried to pull him out of the car fast. 

The smoke and flames were hard to beat 

I felt from behind men pulling me by my feet. 

They pulled us both clear from the car 

As it burst into flames, from us, not that far. 

The fire truck arrived drenching what was hot 

They checked us all over, hurt we were not 

Six months later we came together once more 

As the Governor General came to adore 

The men and women that saved the young crew 

From an accident that came out of the blue. 

Wayne Gilbert: 

Yeah. Thank you, Joe. Joe mentioned a group in the UK, parkinsons.art. They have a wonderful website loaded with poems and paintings all by people with Parkinson’s. They hold an open mic every month, and Jan and I were there yesterday for their open mic. It was evening there. It was middle of the day here. And they are hosting a major gallery show of art and poetry from their website in London. And it will travel to a couple of other cities. And it’ll be open online soon. So, you can check that out at Parkinsons.art, and also there’s a wonderful website based in Austin, Texas, if that matters these days, when we’re talking about websites, called thequiver.org, also posts visual art and creative writing, especially poetry by people with Parkinson’s and there’s a ton of wonderful stuff. On both of those places, Joe has some pieces on the Parkinsons.art. I know Jan, I think you have a piece or two on the quiver.org. I do too. So, check that out. I think you’ll enjoy it. 

Those resources are wonderful and can be very inspiring. So, I’m going to close our cafe this evening first by saying thanks to the poets for being here and sharing and being vulnerable and putting your work out there. And then of course, to the audience who have come to hear us and hear our poems and sort of complete the work by letting it into your mind and spirit, this is a poem called to all the parts of the world. I call it “A Manifesto” as opposed to a manifesto. You’ll see. Okay. 

parkies of the world 

be your own lovely self! 

if you must start a fire 

hold it gently safely in a circle of stones 

where others can gather tell all our stories 

share tea other medicinal herbs plants & secrets 

how we live with this condition 

its multitudinous symptoms 

manifold manifestations 

bedeviling circumstances 

explain how each of us makes our own meanings 

negotiates a world designed for normals 

who will not understand because 

they are afraid 

“it” could happen to them too 

if you must burn 

stay close to the river 

so you can jump in when heat overtakes you 

if you are confused 

stay close to the river 

where trees can provide shade for long meditation retreats 

break open every metaphor 

examine all its implications before you plant it in your heart & soul 

every metaphor speaks many languages 

you must understand them all before you say “amen” 

insist you receive 

compassionate care respectful attention 

resist the language of war & violence & destruction 

if someone wants you to fight fight fight 

turn your back 

shuffle away as fast as you’re able 

sing what you know of lennon’s “imagine” 

abandon symbols logos insignias 

these are by nature exclusive & 

demand you give up some part of yourself 

to belong to get along 

to receive the benefits entitled to believers 

choose love forgiveness acceptance mercy 

especially with regard to yourself & to 

all those for whom parkinson’s is almost 

too difficult to bear 

finally i recommend advocacy 

more than evangelism 

which means you have to know 

what you need what you want 

find the courage to say so 

keep trying to connect even when it hurts 

use your voice 

even if you’ve lost it 

you haven’t 

Thanks to the Davis Phinney Foundation for hosting this event. Thanks to all, good night. 

To download the audio, click here.

Want more poetry? The poems featured in the Poetry Cafe can be found below.

Want to hear more from our ambassadors?

Join us for our upcoming The Victory Summit® Virtual Event: How to Live Well With Parkinson’s For People with Parkinson’s by People with Parkinson’s on April 2, 2021.

Come learn and be inspired by speakers and small group leaders who have been living with Parkinson’s anywhere from two years to 20+ years. They will share their best tips, most moving stories, and the actions they’ve taken to overcome their biggest challenges and most troublesome symptoms. By the end of this event, you will have made a host of new friends and gathered a wide variety of ideas to help you live well with Parkinson’s for many years to come.

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