Featured Family: Regis

Regis is a 26 year old man currently fighting ALS. He has been kind enough to share this wonderful poem that he wrote about his experience.



What am I truely feeling?
the lose of the muscles
from my neck down to my toes
my grip weaking day by day
as my dexterity
slowly starts to slip away
the strugglin to breath
when even the smallest odors wanders by
the voice that now fights
just to be heard or understood
my mammoth legs
that once lifted the back end of a car
have now been redused
to barely bein able
to lift my own weight
using a walker or worse the wheelchair
where ever i want to go
hearing day in and day out
that someone should take my car keys
and strip my last form of independence away
the knowing i can no longer be the strong friend
at least in the physical state
but i never truly understood
what being a strong person really means
i have people look at me
and in the truest deepest most meaningful way possible
tell me im the strongest person they know
how can i be?
inside im breaking and falling deeper
deeper into myself
I feel the pain of my pride,
slowly drifting away from me
The life I am now forced to lead,
Seeing my world in a different light,
how do I ever overcome this endless night?
knowing I now have to fight just to live,
a fight in Which I can never stop swinging
hitting as hard as i can to prolong the inevitable
and when im around friends and family
it is a battle i never fear ill lose
but yet when im alone
as i sit and think to myself
before i drift off to dream
i always look down on my life
and it is in this moment
i find i am at my weakest
its when my tears truely start to fall
I can't fully bring myself to believe
that this is the life i have been delt
all the good ive done
and all the people ive help
its truely unreal to sit here and think
that a year ago i was completely untouchable
ready for anything and everything
knowing i had the world in my hands
and now i have to plan my every move
where im going
who im meeting
what im doing
will i be able to even participate in what we do
wheelchair or walker
will i even be able to get into the building
what will i sit on
the stress i go threw worrying
makes me rethink most of my life and what i do
And no one can truely understand the way I feel,
or what im dealing with
and the friends i keep losin,
I really haven't forgottin,
the love i have lost and the love thats still there,
but in all this sadness
and all the pain i am now faced with
i do have many people
that are standing firmly by my side
people that Im so lucky to have,
the people I really do love and trust,
They give me the strenght to carry on,
and bring me back when my mind is gone.
they Pull me up whenever I'm down,
and give me a place when im truely turned around.
The world has shown me where I need to stand,
and the road i must now walk down
but I now know down deep in my heart
that i can't handle everything with just my one hand.
So I thank God for all the love in my life,
And I can only pray
for the people i need,
the many people who love and treasure my friendship,
to always hold me and keep me strong
My thought's and prayers always turn to them,
for they have life just as hard as i do
to stand by and watch me fight
knowing there is little they can do
to ease my pain and my strife
No longer do I feel all alone on my sinking ship.
i feel love loveing hands
the hands that hold my heavy head up
the hands that are there with the light touch
not to help to much
but to give me ability to stare this right in the face
and makeing me see
the happiness that my world still holds
and that my life is not ending
but more starting a new beginning
another whole new chapter
for me to learn and adapt to
and slow down
to take in the beauty of the world
and make the most
of all the time that i have left.

- By Regis Kleiss, 26 years old. Has had ALS for 2 years.