the pits

the pits
how it feels to be in a wheelchair
by charlene

being in a wheelchair is the pits i tell you all
even if your wonderful it will make you feel quite small
the normal lil things you would simply like to do
never come as easy for me as for you~

you must always find a different way
whether its for work or whether its for play
its a struggle to know just how to adapt
when like me to a wheelchair your strapped

yet even so, when your finished its good
you didnt give up, you did what you should
at least you could move, at least you could give
i suppose there are worse ways to live

i remember the days when i could move about free
it was like WOW'!  as big as the sea
i didnt feel lowly or less than or small
i didnt have to worry about what if i should fall.

i'm the same as you i know this inside
yet never i feel it no matter how hard i've tried
i'm happy dont misread me, i laugh often, i'm smart
but i feel small if you peek inside of my heart

being in a wheelchair is the pits i tell you all
even if your wonderful it will make you feel quite small
being in a wheelchair is hard, yes this is true
its hard for me, it would be hard for you too~

Posted by group mascot on April 1, 2005 at 06:38 AM in other's writings | Permalink | Comments (3) | TrackBack

being strong can take a lot of strength

anonymous wilde

being strong can take a lot of strength sometimes.  i'm a bit weary from being strong so long.  at least i know things will be changeing soon.  i will try my very best to hang in there and believe things will get better.

i feel so mistreated.  i live in a group home where the staff has recently turned over.  we have new staff who dont do nearly as good nor as caring a job with me.  i am in a stationary manual chair.  that means i cant move about unless someone moves me.  i'm also non verbal for the most part, but i can say a few words like yes no and ty pretty clearly.   i'm so sad over whats going on, its rather hard to write about.  but i have to.   i have to tell people!

today i shared with the rest of the wildes whats been going on at home.  it was hard to share.  i havent been treated very kindly and am being yelled at nearly everyday.  i'm not even sure what the reason is i'm being yelled at.  i always try hard to do what i'm asked to do.  my food is being fed to me in unsafe ways and is too hot for me to eat.  it burns my mouth.  and i'm scared i might choke from the way i'm being fed.  i'm being showered in too hot of a water temperature and when i ask them to cool it down they just dont understand.  they think the water splash is bothering me, but its too hot!!  i'm regularly being put to bed much later than i like/need.  i'm having to wear unclean clothes and even other roommates clothes.  i want to wear my own clean clothes!!   i feel like i'm left alone for long periods of time, and no one asks my opinions anymore.  when i am clothed or moved from my chair to my bed i am handled too roughly.  it hurts!!   it just feels so horrid!

this past week i was cut during shaving by someone.  they arent supposed to use regular blades on my face because its hard for me to keep still always.  i cant help it. so i have an electric razor.  but they arent using it.   this past week someone took a chunk off my nose that bled for over an hour.  it was still bleeding 20 min after i got to the program even with pressure and ice on it. 

finally someone asked me the right questions to find out just how bad things have been getting.  i was a little afraid because sometimes when you get someone in trouble your not always treated better.  it was scary.   my family knows.  my dmr service coordinator knows.  reports have been filed with dppc.  they are gonna move me out.  i want to move out.  i just cant take anymore.  i try so hard to be good and understanding and patient with people.  i'm relieved its out in the open now.  i'm so glad my peers know because they could support me having been through simular things.  moving out wont happen overnight.  i love my roommates very much and it will be hard to leave them.  it will take a lot of strength to be so strong.   

someone from the program will visit me this weekend just to make sure the staff are being good to me.  they are gonna pretend to come over on sunday too, though we are just tricking my house staff so they will  be ready.  they dont really plan on coming back on sunday.

i want people to know these things happen.  i want people to know so those it happens to wont feel so alone.  i want this to change about the world.  i need it to change for me.  being strong can take a lot of strength.  but we just cant give up!

Posted by group mascot on March 25, 2005 at 07:18 PM in other's writings | Permalink | Comments (6) | TrackBack

johanna's perfect day

johanna wants to fly out to florida in a private jet with ruby her dear friend, and her boyfriend danny to visit her brother she doesnt get to see often.   the four of them would go to disney world, then universal studios and she'd really show them all a good time!   after the fun and games, she's like to take danny to a fancy french resturant.  they would drive in a purple limousene, and the chauffeur would have a purple hat to match.   she would have on a sparkly shimery dark blue dress with pearls and danny would be in a tux.   now whiles shes been living on her own some time now, her mother has never allowed her to drink wine.  so on this date with danny--- by the way, their very first date alone in 50 years of being together, she wants to have wine with the dinner.   (=    musicians would come and play sweet music for them, and the waitor with a fun accent would flirt with her and she'd blush.   they would eat till their hearts content without worry and without care, and then go hop in their limo and be taken to a newly released movie with whoopi goldsberg.   they'd laugh and laugh and eat popcorn, which they also can not usually enjoy.  after that they'd go back and share their wonderful evening with ruby and her brother, and fly back in their private jet.

Posted by group mascot on February 2, 2005 at 05:58 PM in other's writings | Permalink | Comments (3) | TrackBack

danny on 'his perfect day'

in responce to elizabeths inquiry~

danny would love to go back to washington dc.  he said he wanted me to come on this adventure  (=   he like to start with another tour of the white house.  then move from that to the oval office where the he and i would have a talk with the george bush.  he wants to share his political views with the pres, and since its his perfect day, he'd like the president to agree to change some of his policies~    after several hours with the pres  he says he'd like to hold a press conference and have all the media there required to make it a global event.  he'd want to speak at length on human rights and speak until every ear truely heard him.   then we'd laugh a lot and go hunt down a denny's.  thats his fav place to eat.  and he'd like a cheese omelet, nice and moist, seasoned perfectly.  and right there in denny's he'd want to drink some dunkin donuts coffee!!   as much as he wanted!!   

that's all he wanted to make his perfect day~

stay tuned for more~

Posted by group mascot on January 31, 2005 at 07:44 PM in other's writings | Permalink | Comments (2) | TrackBack

arm wrestling

'no more'  dan says to me  regarding drinking some coffee.
'then i guess we have to fight dan'  i say
he laughs 

its very difficult for dan to drink.  he can't keep the straw, even tho its an adaptive straw best suited for him, in his mouth.  he's now tired of attempting to get the liquid in his mouth.  he's succeeded in getting about 6 ounces down, less than a cup. 

he agrees to try some more as he knows getting fluids down is imperative to his health and well being.  several attempts later we are close to the one cup mark.   he's having a difficult time remaining patient with the process and i can see it in his eyes.  one more try... regardless of the success.  and he does it, dan broke the one cup mark and we cheer.  i pick up his hand and kiss it, 'good work dan'.  guess that means we dont fight today~   

dan laughs

Posted by group mascot on January 22, 2005 at 08:52 AM in other's writings | Permalink | Comments (1) | TrackBack

danny, as we know him

danny has always wanted to write a book about his life
(while this is a feeble attempt to capture pieces of him)
the hopes of his dream being realized, and just telling his story,
has brought daniel to tears... 

and so we begin

danny just turned 70 this year.  he's a proud intelligent deeply caring gracious understanding and wildly funny man!   he has a passion for his fav sports teams and lies awake in bed listening to his radio just to catch all the games!!

danny would want you to know he's been to washington dc, in the capitol, protested there for the rights of those in nursing homes.... he's written letters to the govenor dicatating to anothers hands.... invited the mayor, whose come, to see him and his friends.

he'd want you to know hes held a job, used to do many things hisself, and has loved the same babe for 50 good years.   we'll save more of that for him / them to add themselves.

danny looooooooves his family.  hes come from very good rich stock.  hes been very very lucky like that.  big italian family  who love him dearly!   

danny would tell ya generally long before now that he has cp.   he'd say he lives in his body, and his mind is all there.   thats his intro to folks who first meet him.  he's not embarrassed by his disability.  he knows he is NOT his disability~   

dan's shell is much more frail than average.  not much of his body will listen to or follow his bidding.   he can kinda still use his hands, tho they have no grip.    he puts forth effort to shame the valient in doing so.   a very noble man.

its also very difficult for him to be understood.  while his thoughts are clear his speech is greatly impared.  even those who've know him his whole life strain for clues to understand what he's straining to get out.

daniel is a well thought man of deep convictions, whose seen far more than most in life, having been to so many extreams, seeing so many extreams around him...   

and can he laugh!!   he loves to laugh!!  and sing ' i'm dreaming of a white christmas...'  once we were on a plane together, w hich was quite the ordeal for him to board having been harassed and then carried and stuck etc etc....once when we were boarding this plane he began singing this song and the whole crew and passangers stopped... stunned to hear him sing, so passionately from the heart.

you see danny has a hard time talking too.   its like listening to broken language through an accent too difficult to comprehend.  you know it makes sense, you strain,  but even knowing him closely, it can take 25 times to be understood.   not always... but nearly every day a few times..  some things can be picked out without much effort.   

but he looooves to sing
and we all understand
and the whole crew on the plane stopped till he finished
in their tracks
such a darlin man

life as danny hasnt always been easy.   he wants people to know some of these things.   remember you can stop reading anytime you want.    hehe  life isnt always for the quiesy of heart! 

danny lives in his own apartment, alone, with care givers who pop in and out to feed, clean or put him to bed.   they dont speak much english-- heh--- and some might say neither does he   (=   but they try very hard to communicate!!  he's frustrated that he can't better food, and that training someone to help when they cant understand is often impossible.   

daniel would want you to know he needs someone else to shop for him, cook for him, and even to feed him.   he cant control any of his body parts enough to do those things.   it can be hard to be dependent.   

he comes to our caring program with much eagerness day by day till 3pm when he begins the long treck home again.  except on the days his elevator breaks leaving him trapped in his home alone for days on end with lil fleeting breaks of busy caregivers who flitter in then out again.    sometimes its been broken for weeks.  during those times all he can think about is a fire breaking out and his inablity to get out, and how much he misses his friends.  or if his wheelchair breaks and he cant get out, once again totally out of his control...   those are hard times, and long days, and all are so glad when he is back again!  none more so than he... tho his babe might be a close second!

all who know him love him.  danny is well loved by many and has touched the souls of more than i would ever dare count.

danny tells the funniest stories!   he knows how to get us all laughing...

a valient warrior of many seasoned years...   getting a lil tired for the fights at times
but always finding something else to smile about...   

dan wants to write more, share more,  and will as time and life allow.  keep checking back!

Posted by group mascot on January 13, 2005 at 06:50 AM in other's writings | Permalink | Comments (3) | TrackBack