Akua,
I am sorry that you are going through these difficulties.
I had to get my state involved to get a wheelchair curb cut
put in front of my condo complex. The building resents me
because it cost money, even though they were breaking the law.
Kevin
Akua wrote:
My relationships, most "friends" disappeared.
For me, too and the few that "stepped up" flew in from far far away
and couldn't stay.
One saved my life. But so so so sad that she could fly across country
to help and
my family, in the same state, didn't.
Those of you who have had family and friends stick by you, consider
yourself fortunate.
Kevin
I agree. I think I will knock the teeth out of mouth of the next
person who tells me about advocating
for myself. No one else has done it. No one is here to do it.
I blogged about my latest hellish experience. I was invited to perform
this evening and went through so much to prepare: change eating
schedule so my body will be ready, have the aide who i only have
once a week to shop, instead find makeup, tweezers, clothes ( meaning
she couldn't do other things i needed), find someone to bring the
drummer to me because there was no way for me to get to him,
mediate annoyances, rehearse, create a new work, exercise, find
transport--- which was going to cost $75 come from the other city ,
get me, bring me home. And on Tuesday I was told there was no ramp on
the building--- the Community Arts Center-- so I couldn't perform.
The physical l therapist told me she is closing my case out as there
is nothing she can do for me. What she proposed was that i spend a
couple hundred dollars to get my (unused) motorized wheelchair
adjusted so that i might possibly be able to transfer to it without
help. I said i couldn't gamble away money... if had some assurance or
preview or trial then i would do it. What about standing, leg
manipulation, etc? No answer. Case closed.
Akua (furious)
