attitudes

[Guest guest]

i feel the need to respond to the comments on attitudes

that people are talking about. i think it is great to be up and say live

for the moment. maybe i have been disabled for too long and had it happen

at too young of an age. i was 15 when my disability started. children can

be so cruel, but adults can be even more cruel. once i finished high school

i left home because i didn't like the options i was given - stay at home

and rot or go into an institution. yes, i was threatened with that. i was

sure i could do better on my own so i left home. i worked my you know what

off to try and prove that i was just as capable as anyone else. i was told

i had a great sense of humor, a hard worker) and did a great job at what

ever job i had. unfortunately that wasn't enough. i was always the first

fired, received less pay than other women for doing the same work and was

passed over time and again for promotions even though i always received

excellent reviews from supervisors. there were many times i had to work

two jobs to make ends meet. i never had a supportive mate to help and my

parents were angry with me because i didn't act like disabled people should

act. i still haven't figured out what that means. during this time i lived

in california and fought hard with different groups for equal rights for

the disabled. there was a time when i lived just for the day and thought

the only way to leave the house in the morning was with a smile and a positive

attitude. well, it never got me anywhere job wise. i'm not feeling sorry

for myself, just telling it like it is. i have two degrees - one in computer

programming and one in humanistic studies. i am also half way through a

masters program. physically, fatigue and loss of strength, and intense

pain make it difficult for me to always wear a smile. i have to constantly

fight with medicare and medicaid for my medical need. even if i could work

physically the only thing i have been offered is working in a sheltered

workshop putting together cardboard boxes for $1.00 an hour. i had to put

an end to my work on my masters in 1997 when pain, fatigue and lots of

other things (death of a brother, father, favorite aunt, four legged companion

of 19 years and having to give up my car all within four years). during

that four years i was finally giving a diagnosis of pls and in october

of 1999 was diagnosed with rheumatoid arthritis. i deal with this every

day on my own. i have no mate or children or family left. i would love

to just take off and go to disneyworld but lack of funds and intense pain

won't allow for it. there are those who like me are 'alone', those who

have a mate but are struggling to make it work and those who have worked

out something with their mates. i'm sure i left out someone - sorry. no

matter how positive my attitude the pain or fatigue wears me down after

a while. i believe that we are not dead for a long time. i believe that

there is a life after this one where there is no pain. does that mean i

am in a hurry to leave this one? not necessarily. i know that i have rambled

on but i felt the need to say what i have said. i still have a great sense

of humor, am fun to be with, have dreams and hopes for the future and would

love to travel and do some of the things i planned on doing and have yet

to do. so, just because i don't promote a positive attitude as a cure all

it doesn't mean i don't have one.

kathy