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trisha p

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Hi everyone,

today i've felt more Hopeless about my brotHer's condition tHan i Have in a long time because He's past His plateau and is now discovering tHat His legs are at about 30% of wHat tHey used to be. but His spirit is just so incredibly inspirational tHat He still convinces me tHat notHing is impossible in tHis world we live in. i wrote tHis poem in tHe middle of tHe nigHt a wHile ago but was afraid to sHare in case it invoked any sadness but i tHink it Honours my brotHer's feelings - botH good and bad about als but also about tHe power of love and Hope. i want to sHare it witH Him but i'm afraid to - wHat do you guys tHink? note tHat tHis was my first go at tHe poem - i just wrote wHat i envisioned in my mind (i also wanted to use it in some of my advocacy work for raising awareness about als and wHat it means to live witH it)

i am me....
my arms do not move yet i see tHem dancing above me, circling tHe rays of sun tHat break tHrougH tHe curtains of my bedroom window;
tHey gently run across my wife’s back wHen sHe returns Home from work, loving me even tHougH i can no longer embrace Her;
i long to love Her as i did for years before my body betrayed my mind’s commands, ignoring tHe orders as tHougH a disobedient cHild;
sHe tells me a joke and my laugHter is so loud it Hurts my ears and rings tHrougH my Head even tHougH i know no words escape my still lips.
i smile but my expression does not cHange and i Hope my pleasure claims expression in tHe intensity of my gaze.

i run witH my cHild even tHougH my legs do not work, kicking at tHe soccer ball, splasHing tHrougH tHe beacH, cHasing Her witH tHe dogs even tHougH i can only sit by tHe sea and watcH as otHers cHase Her instead.
sHe runs aHead in innocent jest, splasHing and kicking sand across tHe sHore.
sHe returns and wraps Her arms around me. i Hold Her so tigHtly witH my mind tHat i am afraid tHat tHe mere tHougHt of Hugging Her will be too mucH.
i know if i let go, sHe migHt disappear away from tHese cHains, wHicH invisibly wrap around my arms and legs, sentencing me to a life witHout expression, speecH or movement.
it is almost as if sHe breatHes for me – my cHild wHo Has become my caregiver.

a tear falls from my eye as i realize tHe Hardest part of letting go is to say goodbye to Her and my wife witHout being able to say tHe words;
and tHen i see myself running along tHe beacH again, free and strong and full of life yet i cannot toucH tHe world around me.
my spirit soars and my life is perfect even tHougH tHose around me cannot see How perfect it is just because i am loved and can love in return.
i am free because i Hope and i fly because my imagination tells me it is possible.
notHing can take my spirit, not even my body tHat Has robbed me of so mucH.
i can do all tHings. i can feel all tHings. i can love and embrace and dance tHrougH tHe sHadows of time witH notHing more tHan tHe knowledge tHat i am more tHat tHe sum of my parts.
i am me. i am at peace and even tHougH outsiders migHt not believe me, i am well.
 

Timshelper

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Dear trisha,
this is only my opinion since you said his spirits are still high, i think that it should be something you share with him now so he knows just how much you care and understand what hes going through at this time. if you keep it for later and he never reads it he will never know what you have learned through his illness either. i think we try to hide a lot from our loved ones especially when they have a terminal disease. it was beautiful give him the pleasure of reading it just like you did all of us. do not hide your feelings today for tomorrow may never come.
kim
als about loving someome
 

Al

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i agree with kim. your sentiments are very well thought out and lovely. share them now while you have the chance.
 

me

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i think your words give a very good picture in the mind. you might be an undiscovered poet! melissa
 

Carol Deboer

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WONDERFUL WORDS, WONDERFUL WORDS. WE CAN ONLY IMAGINE WHAT LIFE WILL BE LIKE AFTER WE LEAVE THIS EARTH. WE CAN ONLY IMAGINE WHAT LIFE IS LIKE WITH THIS ALS THING. SOME OF US HAVE FIRST HAND EXPERIENCE WHAT IT IS LIKE, BUT SOME OF US HAVE YET TO CROSS THAT ROAD OR BRIDGE YET. WE HAVE TO BELIEVE THAT THIS CRUEL DIESEASE LEAVES US WITH A BETTER LIFE, SINCE THERE IS SO MUCH SUFFERING HERE ON EARTH. I HOPE THAT YOU SHARE YOUR FEELINGS WITH YOUR LOVED ONE NOW. IT MAY INSPIRE AND HELP THEM TO FACE EACH NEW DAY AND EACH NOEW CHALLENGE AS IT PRESENTS ITSELF. MY HUSBAND WAS A FIRM BELIEVER THAT WITH EACH NEW DAY, COMES NEW WISDOM. HE OF COURSE, WAS RIGHT. I HOPE THAT YOU SHARE WITH US OFTEN. WELCOME.

STAY STRONG,

CAROL
 

Jane

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Trish: Your poem was beautiful. Like Carol You have a wonderful way with words. Please share it. I can close my eyes and picture Sis free and whole again from reading it. Thank you so much for posting it.

Love Jane
 

Theresa2004

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they are words to cherish, that was incredible and inspirational.
lots to ponder in this for sure............
 

sisterofl

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I am me

Incredible words. I feel like you. I haven't posted in a while... Acording to the palliative care doctor my brother has 2 to 3 weeks that's it. It seems only yesterday that he was diagnosed...sorry, don't mean to bring everyone down
your poem is awesome, share it with him and thank you for sharing with us.

Gisèle :(
 

me

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Gisele - It's good to hear from you again....of course, wishing it was under better circumstances. I'm sorry to hear about your brother. I hope you are able to spend some good time with him in these next few weeks. Melissa
 

trisha p

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Thanks to you all for your wonderful words of support and encouragement. I will share it with my brother as soon as they get their computer fixed. Gisèle, I am so sorry to hear about your brother. Stay strong and just continue loving him and showing him as much as you can. And please keep us informed so we can keep you in our prayers and keep our prayers relevant to your needs.

You have all been such inspirations to me, I am glad that my words can inspire back. Thank you from the depths of my heart.
 

Carol Deboer

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HI GISELE,

SO SORRY TO HEAR ABOUT YOUR BROTHER. JUST BE THERE FOR HIM AND SURROUND HIM WITH LOVE AND PRAYERS. YOU WILL ALL FIND COMFORT AND PEACE. I PROMISE YOU THAT. IT ALL SEEMS SURREAL NOW, BUT, YOU WILL FIND THAT SPENDING ALL THE TIME YOU CAN WITH HIM NOW WILL HELP ALL OF YOU. AGAIN, I KNOW. PLEASE FEEL FREE TO CALL ON ME AT ANYTIME YOU NEED. I WILL BE HERE FOR YOU AND YOUR FAMILY AT ANYTIME. PLEASE FEEL MY LOVE FOR YOU AND I AM SENDING YOU A GREAT BIG HUG TOO. STAY STRONG DEAR.

LOTS OF LOVE,

CAROL XOXO
 

Al

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So sorry Giselle to hear that your brother has gotten that bad. It does seem like such a short time ago that you were spending some time with him and he sounded to be just on the verge of needing full care. I hope you and he will be able to spend some time together. Being in another city makes it especially difficult. Take care.
 

trisha p

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I took your advice and sent my poem to my brother but he is not ready to read it yet. His wife read it and she was very touched but said Dwain will read it when he is ready.

I've read it during my Family Chair Speech at the Ottawa ALS Walk Kickoff event in August. The ALS Society is having it published in the Ottawa Sun, for the special pull-out section on ALS that they do every year during the walk. It's my first poem I've ever shared with people, so thanks to all of you who were so encouraging that I share it. It inspires me to write more...- a childhood dream I had long forgotten....THANKS!
 

me

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Trish - great to hear you were able to put your poem out in the public. I'm sure it was as good for you as those who heard it. Sounds like you are staying active which is good for your soul. Melissa
 

jbird

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Wow Trish! Wonderful poem...it brought tears to my eyes. Reminds me of my husband who is now trapped with this awful disease. Thanks!

Praying for a cure
Jbird
 
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