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.
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.
