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Sweet Nicole

jonico

Active member
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Feb 21, 2017
Messages
62
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Lost a loved one
Diagnosis
12/2014
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NY
City
Central
It's been a month to the day since my wonderful wife of 34+ years passed away peacefully, with me and our son and daughter at her side. At the local Hospice Inn, she had a nice room where we set up her Tobii Eye-Gaze so she could chat with us in the closing moments of her life. We cried our eyes out and laughed our asses off, and just plain cherished our final time together as Four.

Given all the challenges we faced during Nicole's 6+ year ALS adventure, we considered ourselves fortunate that she, like Darcey, was able to choose to go on her terms...when the time was right. She was both quite ready and not at all ready, but she knew it was time for a variety of reasons. Her journey was wildly challenging and yet full of life and beauty! I'd like to let her obituary speak to much of that for me, rather than try to articulate it here. Note the photo montage that cycles through top left of her page too.

Although I didn't post here often, I want you all to know I gleaned a lot of valuable insight from all of you, and truly appreciated the opportunity to be a part of such a special group of unique friends. I will do my best to pop in more often now to offer my own insight and encouragement, and undoubtedly continue to receive similar in return.

Nicole became a rather prolific and talented poet these past several years. I'd like to share one poem she crafted using only her ever sharp brain and her beautiful, smiling eyes.

Exactly as she eye-typed it:

Blind meditation

The blinds squint at me

The ebbing sun barely discernable

Peering through the blinds; a bland activity

but it is not the glamorous or sumptuous that often gives us pause

remember when the only love I had were for those that were dust-free?

remember when my childish hands grappled at strings struggling to maneuver?

what an evolution!

I now exist in a realm with plenty of time to notice

Learning how to discern the beauty in the banal

My blinds transmit light in fascinating patterns; shadows growing absurdly sharp angles

Generous to my starving eyes; slits of yard and house and sky

It is so unexpected but wonderful; how much more seeing can I learn
 
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KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
178
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Thank you so much for sharing Nicole’s amazing poetry and story. It is so poignant and beautiful. I’m breaking down into tears as I write this. Kevin
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,696
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so very sorry for your loss. Your description of her as a person, her ending with dignity and her beautiful poem tell us so much about you both. Peace to you as you grieve.
 

JimInVA

Senior member
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Joined
May 29, 2014
Messages
852
Reason
Lost a loved one
Diagnosis
04/2014
Country
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State
VA
City
Poquoson
I, too, am deeply sorry for your loss. Thank you for allowing us a glimpse of her person through the beauty of her prose. I'm glad she was able to choose the particulars of her passing and was surrounded by those who loved her most. My very best to you during the days that stretch ahead.

Respectfully...

Jim
 

lgelb

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Nov 5, 2009
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00/0000
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WA
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Seattle
My condolences on the loss of Nicole, who clearly had many gifts -- not the least of which was her loving family. I hyperlinked the obituary in your post. Thank you also for her poetry.

Best,
Laurie
 

jonico

Active member
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Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Thanks Jim! Darcey's tribute to the two of you was beautiful and offered such a vivid portrayal of her zest for life and her love for you. Appreciate you sharing.

Thinking of you and hoping you are faring well at this time...Jon
 

jonico

Active member
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Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
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US
State
NY
City
Central
Thanks for the kind words and the hyperlink Laurie!
 

vltsra

Distinguished member
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Joined
Nov 12, 2015
Messages
462
Reason
CALS
Diagnosis
11/2015
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US
State
CA
City
San Diego
Jon, so sorry to hear of Nicole's passing. Thank you for sharing her beautiful poem here on the forum. I can't think of a more moving tribute to her. May you find peace and comfort.

V
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Jon, so sorry for the loss of your beloved. Thank you for sharing the tribute to her life, the pictures, and her remarkable poem. It is absolutely beautiful and such an honest perspective into the feelings a person with ALS struggles with and learns to appreciate over time.
 

jonico

Active member
Forum Supporter
Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Hi Cathy,

First, I love your John Lewis quote. Thanks for that!

Second, and more importantly, thank you for your kind words tonight. I won't go into details, but your post was very timely and very much needed and very much appreciated at this particular point in time.

Thanks so much, and all the best to you on your own challenging journey. I will keep an eye open for you in the ALS Forum-world going forward...Jon
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,245
Reason
DX MND
Diagnosis
07/2014
Country
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CO
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Vail
I thought I had responded to this thread earlier, but must not have pushed the right buttons.

What beautiful words. My deepest condolences for your loss.

It is difficult to participate in a forum where we know that everyone is going to pass. Yet, the intimacy that I see people experience is simply beyond words. Thank you so much for sharing!

Steve
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
553
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Jon, I am so sorry for your loss of Nicole. Thank you for sharing her poem and obituary with us. She was an amazing woman. You and your family are in my thoughts and prayers.

Sharon
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
253
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
My condolences on your loss. As others have said she was an impressive woman. You and your family are in my thoughts.

Ed
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
636
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
So sorry for your loss. May she fly free! Wishing you peace.
 
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