3WW - Locked In
Delayed - Edge - Focus
Locked In
I heard him utter beneath his breath
I'd never want to live like that.
How would you know? I asked
with anger rising defensively.
That could be me one day living on
the edge locked deep inside.
I saw the man looking at the world before him
hearing its symphony of sounds.
Loved by family and friends, he had value
still a contributor to this world.
He has choices to give him focus
with technology as an ally.
He may not speak or move his body but
he can feel the wind brush his face.
His life might get delayed in its pace
but he has so much yet to do.
How do we know what we would do
until we are really there?
I was inspired to write this after watching the "Diving Bell and the Butterfly." I related to the character that was totally locked in his body. There is a big debate going on at the ALS site on whether or not ALS is fatal. Many patients on ventilators feel they are very much alive and living well. Others feel that is not really living, its a burden on family and a financial drain. I hope no one told Steven Hawking that because he just might find a way to deck them. It's a personal choice that we should get positive support in making. Many patients don't have supportive families and are given no hope to keep fighting for a cure from the majority of doctors. ALS patients are sent home with a time frame and hospice while similar illnesses are sent home with rehab and resources. It saddens me greatly! This is not so much of a poem as it is a commentary because that's just what came out.
22 comments:
tammy, wonderfully done poem. I do not think of it as a commentary atall. You with your poetry make us all so aware about ALS.
You exude so much positive vibes.
hugs!
Very interesting and informative. And there's no law that says a poem can't be that way ;)
Well it came out perfectly!
I've never seen the movie, but I will look for it.
xoxo
That movie is on my list to see...and now I want to see it even more. I can see why that whole thing is a debate, but I can see even moreso, why it saddens you as it does. Just make sure you make YOUR needs and desires known. Have them written and signed. Continue to live your life as Tammy wants it to be lived...whatever that may be.
I love you,
Nancy
deeply moving. i hope i get to watch the movie.
I just bought it, and watched it for the first time a few days ago. I had read the book a while ago and wondered how they would manage the film. They did a wonderful job, and it really is a beautiful, profound movie. To all of you who haven't seen it, or read the book this man wrote one letter at a time with his left eyelid and the help of his nurse, I can only say: DO!
Good post, Robin! Fine poem!
I can't decide imagine what it's like to be like that but people with these conditions deserve a chance to live
I might get my hands on the book and watch the movie when I get a chance
as you said,, it is a matter of personal choice.. i am contented with the life i have lived at this point.. were i to have the option,, i would just as soon go sooner than later.. that is not pessimism,, that is just how i feel.. were i to be diagnosed,, with anything that even resembled a fight,, i resign.. but that in no way means i think you should.. heavens no... you are living a fuller life than i am,, and i am not complaining,, i am thrilled to have had the life i have had... but i am not willing to argue with fate about holding onto what ever i may have left...
you are an inspiration to a person like myself.. and i love it when you allow me a glimpse into your world and way of thinking,, as it is often so different than my own,, but equally as intelligent and well thought out...
I agree with you Tammy - all of your sentiments. I always enjoy coming over and seeing what you have to say. :)
I haven't read the book or seen the film, but you write so movingly. I should.
tammy, you know i've worked in rehab. so i understand and i applaud your clarity. who's to ever say? it's all relative. my friend willa, fighting cancer, said "as long as i can give and get love, i want to be here".
i hope you are well. i like your pictures.
:)
thank-you for, in your gentle way, shedding light on this issue, the questions being considered and debated surrounding ALS.
Right now, this is saddening me as well.
And this line - How do we know what we would do/until we are really there?
This says it perfectly.
I've thought this so often. we don't know. And who we would be, if in that given situation, would be rather different than who we are right now, because life changes us. We don't know. We can't know.
So let us go gently with other and ourselves, offering kindness, respect, honor to these choices.
loved the photo!!... you have spoken so eloquently on a topic that is so dear... it is a mystery this life... i agree we will never know our true feelings until even the slightest possibility of our life changes... we are never aware of how much we want to live until it is somehow taken away... our bodies work so well... we wanna move, our body moves, we breathe w/o thinking... someone very near and dear experienced something such as you speak.. and i never saw someone hanging on to life with every breath every moment and she made the most of ever second... regardless of what was handed her... yr courage makes me wanna hide under a blanket only b/c i am so lacking... it is always a pleasure to come here and view an open window into your wonderful life filled w/love and devotion..
We all live in some sort of prison. Some are just more visible that others. Life is and beyond that I don't know much.
Powerful powerful post! Packed with wisdom applicable to all avenues of life! Until we walk in someones shoes, we just don't know! My challenges have taken me down a path I could never have imagined. Thankfully I have love and joy in my life even though it may not be visible to the naked eye!
Hugs and thanks for Sharing such honesty!
Sherrie
WOW, Tammy that was so powerful and beautiful at the same time. You are such an amazing woman, with so much to say, so much to teach. I learn from you every time I stop by to visit.
I haven't seen the movie, but plan on it.
Please keeping writing, my friend, you have such a gift.
Sending love,
Eileen
Mighty powerful words from a powerful person, Tammy. Not only did you get out a great message, you did it with tact but still directly. Great job!
oh, yes, it is poetry, indeed, tammy; beautiful words spilling onto the page leaving us all filled with thought and feelings. you are pretty amazing and so very talented. i am glad we have this shared space where we touch lives.
Husband and I were discussing this and he brought up when Stephen Hawking built himself a robotic body on "Futurama" and, in Husband's words, "went around and kicked peoples' asses."
I hope that all is going as well as it possibly can for you. I am always impressed by your strength and determination.
I would not give up if I had a disease like ALS....or I would like to think this. I let various depressing memories/situations get to me greatly at times. Any kind of sadness is amplified by my thyroid problems (inflamed) as it is.
I am proud of you and glad that you wrote this post.
I don't know how you see the truth and pureness in so many situations, but you do. Hope and acceptance are two balances that we need to make it through the day.
This is a debate that is very much on my mind.
I watched the Diving Bell and the Butterfly this weekend. It was an amazing film and I plan on reading the book. Your poem was a very nice reflection on the movie. The issue of quality of life impacts so many of us.
Thanks for the kind comment for my poem.
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