Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (01/18/91)
Index Number: 13069
i find myself in overload mode yet again. i'm not sure where to start.
i'm having some trouble with my right leg and fatigue (ms) and i've
decided it is time to quit driving. i've been struggling with this
decision for a while now. it's been a hard one. but finally i've made
it and i know it is the right thing to do. now i get to live with the
consequences.
i have been watching my independence disappear and my dependence grow
for a while now. it hurts a lot. what did i use the car for? with my
fatigue i can't do much of anything anyhow. there was lots of juggling
to do anything. if i drove to the mall it had to be on a day when i
had the energy and nothing else planned and then i could of the spend
an hour or 2 and had to be sure to quit with enough energy to load my
scooter and drive home. too much work but the freedom to do at all is
gone and it hurts.
where did i drive? to work, to the doctor and other medical
appointments, to the post office (rarely), to the drug store (t oo
often) , to shop, to the beauty shop (i desparately need a hair cut
NOW) , to the bank for things i can't do by phone, to meet a friend for
lunch (once or twice a year) . what else? i am racking my brains.
thrilling life, no? i can't think of anything else. well, well a
finite number of things to deal with. oh, i need to get to a shoe
store with orthopedic shoes to get something i can wear with my new leg
brace. oh, did i call this thing overload? i've spent the last 3
months trying to break in a new brace which of course means breaking in
my leg, not the brace and it's not going great.
so driving is the issue here. i have request an application to get
into the local paratransit deal. then i can schedule my transportation
2 to 10 business days in advance! my my my, the line that keeps going
through my mind is beggars can't be choosers.
i am finally free of that fear that would hit me when i'd wake up in
the middle of the night and remember that i'd have to drive to work in
the morning. but i feel like i've lost so much. i feel like i am such
a burden to my husband. i felt so bad today reminding him to pick up
my prescription today because it is just the first of so many trips to
the drug store not to mention all the other stuff that i used to do
that he now has to do from the grocery shopping to the cooking to
bringing in the mail. my dental hygienist suggested i ask him to floss
my teeth for me! you know, it's just one little thing right? right one
more little thing on top of one million others. right.
how does anybody deal with the dependency? how do you keep a sense of
self worth? i can see my accomplishments. i can see how hard i am
trying. i can give myself credit for my accomplishments. but i can't
seem to handle how dependent i've become.
overload. my urologist removed some polyps yesterday so i made the
driving decision in the middle of my terror facing that procedure.
it's not hard enough without being in overload. it was painful but today
i feel mostly ok. it is not over of course. in 10 days the scabs fall
off and it gets painful again and there is the possibility of infection
and the big question is will it make me any better? i won't know for a
while. who ever would have guessed my life would revolve around going
to the bathroom?
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgJack.Colley@p14.f9.n249.z1.fidonet.org (Jack Colley) (01/18/91)
Index Number: 13074
Hi Adrienne,
Allow me to quote the letter you mailed on 04-Jan-91
AB> into the local paratransit deal. then i can schedule my transportation
AB> 2 to 10 business days in advance! my my my, the line that keeps going
AB> through my mind is beggars can't be choosers.
AB>
In Ontario the Ministry of Transportation funds great scads of money
so the disabled person should be able to get reasonable transportation
at fair prices. I had worked with the M.T.C. for many years and these
fellows go out of their way, with much encouragement, and many incentives
The problems, as I see them are with the local politicians, and the
bureaucracies they set up so that the complaints of the disabled get
lost. Transportation is everyone's right, and I would suggest your
provincial or state representative, if you are not getting a good deal in
transportation.
Kingston,Ontario
Jack Colley
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!249!9.14!Jack.Colley
Internet: Jack.Colley@p14.f9.n249.z1.fidonet.orgPandora.Nigh@f3.n157.z1.fidonet.org (Pandora Nigh) (01/18/91)
Index Number: 13075
Hi Adrienne, I'm really sorry your having a bad time right now. Take
a deep breath and relax a bit, I know it's hard to do, but just take a
few deep breaths. Now, instead of getting bogged down with the concept
that I'm becoming more independent, think about ways to reduce the
situation. I can suggest a few. First about not being able to drive, if
the problem is the ability to use the foot controls then check into hand
controls. I'm sure your having to load your own tricart is another big
problem adding to your fatigue. Have you checked into the lifts and
loaders that they have for tricarts. Yes these modifications cost Money.
But maybe BVR or the MS society where you live can help with that
expense. If not you and your husband can save for it. It will give you a
goal to strive for as well as lifting the burden of feeling like you
will always be dependent on others. If you need the names of
manufacturers that make handcontrols or tricart lifts let me know.
How do we cope when it happens to us, well for me it was a bit of
depression than a quick jump to anger and the decision that their had to
be methods somewhere that would allow me to keep up with most things
that I used to do or wanted to do. I also learned to be realistic. There
are things that I can't do but so what. Get together with your husband
and brainstorm, figure out ways to redo or modify things. Can he make
you a portable ramp that you could use to get the tricart into the car.
Budget your time as if you were doing a financial budget so that you can
trade off activities on and off. Good luck, you will find a way and feel
better soon.
Pandora
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh
Internet: Pandora.Nigh@f3.n157.z1.fidonet.orgJean-pierre.Beland@f223.n163.z1.fidonet.org (Jean-pierre Beland) (01/18/91)
Index Number: 13076
Hi!
I understand how you feel...
maybe taking the para-transit might help you conserve some energy.
cheers, J.P.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Jean-pierre.Beland
Internet: Jean-pierre.Beland@f223.n163.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (01/18/91)
Index Number: 13080
On Sat, Jan 05 Pandora Nigh (1:157/3) wrote the following to Adrienne Barhydt:
PN> Hi Adrienne, I'm really sorry your having a bad time right
PN>now. Take a deep breath and relax a bit, I know it's hard to do,
PN>but just take a few deep breaths.
thanks, that helps.
Now, instead of getting bogged
PN>down with the concept that I'm becoming more independent, think
PN>about ways to reduce the situation. I can suggest a few. First
PN>about not being able to drive, if the problem is the ability to
PN>use the foot controls then check into hand controls.
hand controls remain a remote possibility. i need to get my
reaction time, etc. evaluated. i will investigate further but i
think it is unlikely to work out. i find that the least bit of
stress ties my muscles in knots and there is simply no way to avoid
all stress behind the wheel. I'm sure
PN>your having to load your own tricart is another big problem
PN>adding to your fatigue. Have you checked into the lifts and
PN>loaders that they have for tricarts.
i have a lift already. i could never have loaded the scooter
without it. but the few steps between the trunk of the car and the
driver's seat is tiring.
PN> How do we cope when it happens to us, well for me it was a bit
PN>of depression than a quick jump to anger and the decision that
PN>their had to be methods somewhere that would allow me to keep up
PN>with most things that I used to do or wanted to do.
i am flipping around rapidly between all three. i know there is no
point in trying to skip over the sadness at the losses. it's just
no fun to go through. I also
PN>learned to be realistic.
i get that lesson too often for my liking.
There are things that I can't do but so
PN>what.
maybe i had hold of that attitude before. i sure don't have it right now.
Get together with your husband and brainstorm, figure out
PN>ways to redo or modify things.
back into the endless brainstorm.
pandora, thanks. everything you have said makes good sense and i
know it's the direction to go. i think i need to weather the
emotional storm a bit longer before i can get together the energy i
need for the brain storm.
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgBetty.Draughon@p10.f1.n360.z1.fidonet.org (Betty Draughon) (01/18/91)
Index Number: 13082
Well, beloved friend, I'm not going to quote your message. I feel
for you tonight, and last night when I read your message first. My
heart goes out to you, and I want to hug you. Hang on, Sweet Pea.
Let's look for some alternatives. You've accepted the fact that
you are not safe to drive anymore. One of the things you listed
was your frequent trips to the drug store. I don't know where you
live, but even in large cities there is usually a small drug store
around that will deliver. You may have to pay a bit more for your
medicines, but it will be worth it to you not to "bother" your
husband with bringing them home to you. There are also
prescription services by mail. You have to plan in advance, but
they are available, and will usually get you your needed meds
before you run out. That's just a couple of alternatives that come
to mind.
I know it's not easy to watch your independence disappear, and
accept that you become more dependent. It never is, Angel.
Never. If you weren't a fighter, you'd be a vegetable by now.
Overload will pass. Maybe not quickly, but it will pass.
Don't look on asking others to give you a hand as being useless.
You can still take occasional trips to the malls. There are Boy
Scouts and Girl Scouts that are always looking for services they
can perform. They can help you with your scooter, and they
probably will have a kid old enough with them to drive you.
Scouting is a service oriented activity. Give them an
opportunity. It will be good for both of you.
By not being able to drive to work anymore mean that you're now at
home all day? You say you need a hair cut. Are you aware that
people will come to your house to do your hair? There are
beauticians who do that, Angel. Call the Council on Aging and ask
who they have on their reference list that will come to your house
to cut your hair. They even try to please.
As for your shoe and leg brace, I don't think there is another
alternative to that, just yet. Your dearly beloved, or some close
friend will have to take you there.
As for the banking - there are more and more banking facilities
available by telephone. Direct deposits and debits, transfer of
funds, etc. My oldest says he never goes to the bank anymore. He
pays all his bills by phone, or automatic debits. He lives in
Chicago.
I can't help you with breaking in the brace. I haven't had any
experience with that in over 40 years and I'm sure they've improved
things since then. Maybe someone else here has some help along
those lines.
You made reference to "beggars not being choosers!" Now cut that
out! You are not a beggar. Not by a long shot. You are
inconvenienced, you had poor transportation facilities available to
you by the public service people, but, you are NOT a beggar.
You've helped other people before you got sick yourself, right?
What types of organizations did that? Call them. Call in some
favors, Angel. Locally, I'd call in church groups. There ARE
people out there who will help, who are compassionate, who will not
look down at you and "pity" you. If necessary, offer to PAY
someone to help you.
Of course, you feel that your world is caving in on you. A ton of
feathers is still a ton. Add enough of them, and they'll break
your back, if you can't find a way to get rid of some of the load.
Venting here is a big help.
It may take a while, but you'll find a way to make up to your
husband the extra things he has to do for you. For one thing,
you're there. You give him a reason to come home. Who would pet
your cats all day, if you weren't there? Life would not be easier
for them if you were gone, Angel. Not by a long shot. Your
husband's love for you is invested. He loves you - anyway. He
didn't stop loving you when you could no longer totally provide for
yourself and for him.
You mentioned flossing your teeth. I think you can still do that
effectively. There is an appliance available at the drug store
where the floss is on a handle, and it doesn't take two hands to
floss. If you can still type, you can still floss.
AB> how does anybody deal with the dependency? how do you keep a sense of
AB> self worth? i can see my accomplishments. i can see how hard i am
AB> trying. i can give myself credit for my accomplishments. but i can't
AB> seem to handle how dependent i've become.
You can keep your sense of self-worth by knowing that you are YOU.
You are valuable to everybody who loves you, and that includes us.
We all have limitations, Angel. Every one of us. Those things
which we can do, we do to the best of our ability. With time, we
learn to accept the things we cannot do. Let's work to try to
relieve some of your perceived dependency. I would bet that
together (all of us) that we can make your life a bit easier. You
are not alone.
AB> who ever would have guessed my life would revolve around going
AB> to the bathroom?
I hope the scabs coming off are not too painful, I hope you don't
get an infection, I hope the procedure makes things better. As for
the quoted question, you'd be surprised at how many people have
their lives revolve around going to the bathroom. It's simple only
when everything is working right. But, we always take things for
granted when they're working right. We abuse healthy bodies, we
should never take them for granted. But, we do.
Hang on, Angel. I'm working on it.
Betty
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.10!Betty.Draughon
Internet: Betty.Draughon@p10.f1.n360.z1.fidonet.orgJim.Smith@p0.f7.n388.z1.fidonet.org (Jim Smith) (01/18/91)
Index Number: 13085
* Subj : Overload
Adrienne, we're all dependent on others for some things. Nobody can
do everything for themselves. You've just got to remember that.
And, if you think about it, you'll realize that there are things that
others depend on you for, too. Depending on others is a part of
life, and you shouldn't ever think of yourself as a burden. I'm sure
your husband likes to do things for you.
-$- Smitty -$-
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!388!7.0!Jim.Smith
Internet: Jim.Smith@p0.f7.n388.z1.fidonet.orgRobert.Ezergailis@f106.n244.z1.fidonet.org (Robert Ezergailis) (01/18/91)
Index Number: 13086
Interesting about being tense at the wheel. Many people are.
I wonder if some video games that simulate hand controls in some
ways and also help with reaction to the unexpected (eye hand
coordination) might prove both fun, relaxing, and beneficial ?
I have seen some home versions of arcade type games that
are quite interesting.
They say that young people who play such games regularly do
benefit in improved reactions and improved eye hand coordination
and even fighter pilots are trained in a similar way. Also the
difficulty level can usually be controlled.
Even joystick type games might prove helpful.
So have some fun and perhaps enjoy something that really might
help with the problem !
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!244!106!Robert.Ezergailis
Internet: Robert.Ezergailis@f106.n244.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (01/23/91)
Index Number: 13109
hi betty,
thanks for all your suggestions. the number one thing for me now
is to remember not to try to deal with everything at once. my
number one priority is to get into the paratransit system. i
completed the application and mailed it to my doctor yesterday to
get her signature. i think when i have a way to get to and from
work and doctors' appointments i will be a lot more at ease. right
now the calendar just sits there and glares at me.
the practical and the emotional are existing on two different
planes for me now. if i attend to the practical the emotional gets
lost in the dust. if i go with the emotional the practical becomes
scarier and scarier. there doesn't seem to be a point of balance
between the two.
i am working from home, dialing up the mainframe from the pc. i
had hoped to have a new set of wheels under my wheels by next week
so i could get in to work but the bureaucracy is making me doubtful
now.
on the flossing situation. i have become more expert than my ot on
what is available and what works. there is no way to load the
holders that come unthreaded. the preloaded ones that i have tried
tend to be poor quality floss that shreds as soon as you try to use
it. some are so small that you can't get the floss down to the gum
line. the best that i have found hold the floss quite rigid so you
can't maneuver it well enough for it to be effective. i am using
an electric tooth brush plaque remover gadget but i don't yet have
the OFFICIAL word from the hygienist on how well my gums are
doing. the flossing is a real sore spot for me because it is about
the only health thing i've been able to do and really make a
difference.
my beggars can't be choosers comment was primarily an emotional
expression in reaction to changes in my life due to becoming
dependent, changes that i would like to generate more discussion
among anyone that's interested. the thing is when you are
dependent on others, your expectations just have to change. things
are just never going to be the way they'd be if you were going to
do them for yourself. like, it's just not reasonable to expect
anybody to just drop everything and do what you want right when you
want it. that is clear, very clear and very reasonable. but to
face that again and again and again for trivial things as well as
important things is going to take an attitude adjustment that seems
pretty impossible right now.
well, i must be making some progress towards getting back to my
normal self. i look at my life revolving around the bathroom
comments and i can laugh at the situation. (hey, anybody out there
got any good bathroom jokes?)
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (01/23/91)
Index Number: 13110
On Mon, Jan 07 Robert Ezergailis (1:244/106) wrote the following to
Adrienne Barhydt:
RE>I wonder if some video games that simulate hand controls in some
RE>ways and also help with reaction to the unexpected (eye hand
RE>coordination) might prove both fun, relaxing, and beneficial ?
i used to play a game that involved shooting down asteroids by hitting a single
key repeatedly, as fast as possible with my index finger. my neurologist used
to measure some sort of functioning with a typewriter-like key that you had to
pound on repeatedly with your index finger as fast as possible. with my right
index finger i could score way more than healthy people. unfortunately, it
didn't translate into anything useful day-to-day.
RE>They say that young people who play such games regularly do
RE>benefit in improved reactions and improved eye hand coordination
RE>and even fighter pilots are trained in a similar way. Also the
RE>difficulty level can usually be controlled.
i play tetris and it's clones frequently. they are quite good at
distracting me from my leg spasms. i suspect they may keep me
performing at my peak in a sense, but it's the wiring that's shot
and that's the limiting factor in what i am able to do.
RE>So have some fun and perhaps enjoy something that really might
RE>help with the problem !
RE>
it is fun and i have no intention to quit. just the fun is motivation enough
for me.
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (01/23/91)
Index Number: 13111
On Mon, Jan 07 Jim Smith (1:388/7) wrote the following to Adrienne Barhydt:
JS>* Subj : Overload
JS>
JS>Adrienne, we're all dependent on others for some things. Nobody
JS>can do everything for themselves. You've just got to remember
JS>that. And, if you think about it, you'll realize that there are
JS>things that others depend on you for, too. Depending on others
JS>is a part of life, and you shouldn't ever think of yourself as a
JS>burden. I'm sure your husband likes to do things for you.
JS>
JS>-$- Smitty -$-
hmmm...there is something here that i need to ponder further. i
think that every word you said is true, EXCEPT that i shouldn't
ever think of myself as a burder. i think that i am. it doesn't
mean people won't willingly help me, it doesn't mean i have nothing
to contribute. it doesn't completely define me, but it is part of
my definition.
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgPandora.Nigh@f3.n157.z1.fidonet.org (Pandora Nigh) (01/23/91)
Index Number: 13115
Hi Harry, thanks for the compliment. I think most of us on the echo
feel pretty much and think about things sort of the same. Practice helps
keep the feelings and striving going. I think the other thing that has
helped me cope and I forgot to mention it to Adrienne is that just to
remember your still you no matter what is happening. Your still the same
loveable, sweet, worthwhile person you always were no matter what your
body decides to do this week. Were survivors and that's what counts. I
have a pet theory that if a plague or we are nuked that the majority of
survivors will be the disabled. We have learned and keep learning skill
ofdaptation to change in enviornment and that's what makes something
survive. Yep, I think we'll do better than the nondisabled.
Pandora
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh
Internet: Pandora.Nigh@f3.n157.z1.fidonet.orgEarl.Appleby@hnews.fidonet.org (Earl Appleby) (01/23/91)
Index Number: 13117
In a recent message to Harry London, Pandora Nigh writes:
PN> ...just...remember your still you no matter what
PN> is happening. Your still the same loveable, sweet, worthwhile
PN> person you always were no matter what your body decides to do
PN> this week.
So true, my friend, even if there are fools that don't recognize it.
The following conversation took place by my father's bedside just days
after he entered coma:
Dr: The time has come to make some decisions.
Me: If you mean the decision to pull the plug, to kill my
Dad, that's one decision we'll never make!
Dr: You are creating a monster here, a Frankenstein.
Me: (pushing him to the nurse's station [It still infuriate me that he
would subject my Dad or anyone to such garbage!!!]
I beg your pardon, Doctor, we're talking about saving a life.
Dr: Yes, but what kind of life? [The death-pushers are relentless,
which is one of the reasons we must be "soldiers," Robert, if
you're "listening."]
Me: Let me get this through your head for once and for all. For the
Appleby's there is no kind of life, only life, a gift from God. As
my brother Dwight [now in Desert Shield...candles, please] says,
"He's the same Dad. He has the same soul."
PN> Were survivors and that's what counts.
Ain't that the gospel truth!
PN> I have a pet
PN> theory that if a plague or we are nuked that the majority of
PN> survivors will be the disabled. ...
PN> Yep, I think we'll do better than the
PN> nondisabled. Pandora
A creative and sensible theory that I'll try to credit when I
expropriate it <grin>. And not just because of the survival skills
but because of that "will" that Gary so rightly distinguished from
"wishes," especially the will to live.
Pandora, you're a peach [if Betty will let me borrow that Georgia
delectable]! (((PN)))
Warm wishes,
Earl
... Where there's life, there's hope. (CURE: 304-258-LIFE)
--- Via Silver Xpress V2.27
* Origin: The Handicap News, Shelton CT (1-203-337-1607) (141/420)
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Earl.Appleby
Internet: Earl.Appleby@hnews.fidonet.orgEarl.Appleby@hnews.fidonet.org (Earl Appleby) (02/01/91)
Index Number: 13295
In a recent message to Harry London, Pandora Nigh writes:
PN> ...just...remember your still you no matter what
PN> is happening. Your still the same loveable, sweet, worthwhile
PN> person you always were no matter what your body decides to do
PN> this week.
So true, my friend, even if there are fools that don't recognize it.
The following conversation took place by my father's bedside just days
after he entered coma:
Dr: The time has come to make some decisions.
Me: If you mean the decision to pull the plug, to kill my
Dad, that's one decision we'll never make!
Dr: You are creating a monster here, a Frankenstein.
Me: (pushing him to the nurse's station [It still infuriate me that he
would subject my Dad or anyone to such garbage!!!]
I beg your pardon, Doctor, we're talking about saving a life.
Dr: Yes, but what kind of life? [The death-pushers are relentless,
which is one of the reasons we must be "soldiers," Robert, if
you're "listening."]
Me: Let me get this through your head for once and for all. For the
Appleby's there is no kind of life, only life, a gift from God. As
my brother Dwight [now in Desert Shield...candles, please] says,
"He's the same Dad. He has the same soul."
PN> Were survivors and that's what counts.
Ain't that the gospel truth!
PN> I have a pet
PN> theory that if a plague or we are nuked that the majority of
PN> survivors will be the disabled. ...
PN> Yep, I think we'll do better than the
PN> nondisabled. Pandora
A creative and sensible theory that I'll try to credit when I
expropriate it <grin>. And not just because of the survival skills
but because of that "will" that Gary so rightly distinguished from
"wishes," especially the will to live.
Pandora, you're a peach [if Betty will let me borrow that Georgia
delectable]! (((PN)))
Warm wishes,
Earl
... Where there's life, there's hope. (CURE: 304-258-LIFE)
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Earl.Appleby
Internet: Earl.Appleby@hnews.fidonet.orgJim.Smith@p0.f7.n388.z1.fidonet.org (Jim Smith) (02/01/91)
Index Number: 13298
* Subj : Overload
AB> hmmm...there is something here that i need to ponder further.
AB> i think that every word you said is true, EXCEPT that i
AB> shouldn't ever think of myself as a burder. i think that i am.
AB> it doesn't mean people won't willingly help me, it doesn't mean
AB> i have nothing to contribute. it doesn't completely define me,
AB> but it is part of my definition.
If you're a burden, so is everyone else that was ever or will ever be
born. Every depends on others for some things. Don't think I don't
know how you feel. I've been confined to a wheelchair since birth.
I've been without batteries in my chair for the past week, so I've
been completely dependant. But, if I thought of myself as a burden,
I probably wouldn't be around much longer.
-$- Smitty -$-
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!388!7.0!Jim.Smith
Internet: Jim.Smith@p0.f7.n388.z1.fidonet.orgHarry.London@f1000.n261.z1.fidonet.org (Harry London) (02/01/91)
Index Number: 13299
PN> survivors and that's what counts. I have a pet theory that if a
PN> plague or we are nuked that the majority of survivors will be the
PN> disabled. We have learned and keep learning skill ofdaptation to
PN> change in enviornment and that's what makes something survive. Yep, I
PN> think we'll do better than the nondisabled.
Hello, Pandora-- I suppose that's because in a sense we have already
been nuked and plagued and survived through a complicated process of mind
and will. On a related thought: I've been in a wheel chair (paraplegic T-
10 for just about two years) for just about two years, but in my mind I
still walk...so every time I just happen to see myself in the mirror it
comes as a surprise to me that I am in a wheelchair. Not a technique,
simply something I stumbled on. Keep the sage advice coming.
Best,
Harry
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Harry.London
Internet: Harry.London@f1000.n261.z1.fidonet.orgHot.Wheels@f700.n12.z1.fidonet.org (Hot Wheels) (02/01/91)
Index Number: 13306
HL> I've been in a wheel chair (paraplegic T- 10 for just about two
HL> years) for just about two years, but in my mind I still
HL> walk...so every time I just happen to see myself in the mirror
HL> it comes as a surprise to me that I am in a wheelchair. Not a
It's good to know I'm not the only one. I have Cerebral Palsy. I
know I'm in a wheelchair, but I hate mirrors and pictures of mysef or
hearing my poor speech on tape. It's not me1
Am I in denial?
Scott
... Recovering from BBS Burn Out
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!12!700!Hot.Wheels
Internet: Hot.Wheels@f700.n12.z1.fidonet.orgBill.Koppelmann@f810.n104.z1.fidonet.org (Bill Koppelmann) (02/01/91)
Index Number: 13309
Frank, when it comes to death and "being hooked up to those infernal
machines," I couldn't agree with you more. Who's to say what is the
real reality about these things, but for me, I can't see that
vegetating is "life" at all. You have my vote and I would hope that I
will be able to have the will to do what I think about when it comes
that time.
Bill
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!810!Bill.Koppelmann
Internet: Bill.Koppelmann@f810.n104.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (02/01/91)
Index Number: 13319
On Tue, Jan 08 Pandora Nigh (1:157/3) wrote the following to Adrienne Barhydt:
PN>things of our disabilities. What will keep you going a bit more
PN>level is to remind yourself you've coped before and you will do
PN>it again. It gets realy frustrating having a varing condition or
PN>progressive one, but you do learn to bounce back emotionally with
PN>those also. In fact I've found that as I keep getting
PN>progresively worse it is taking less time for me to adapt and
PN>adjust, think it gets to be practice.
if practice makes perfect, i should be perfect or better by now. <wink>
emotionally i seem to be operating on a more even keel. i still don't have my
paratransit id so i feel like all the practical stuff is on hold which is kind
of frustrating.
The other thing that helps
PN>abit is that I start planning way in advance of things and know
PN>and start getting ready for modifications and such before the
PN>need becomes critical. Hang in there, you'll feel better soon.
i have kind of a balancing act to do with the future. it is pretty devastating
to look at where i will be in the future if things continue the same way, so i'm
getting better and better at living in the present. on the other hand, there
are things for the future that would be better to set up before they are
necessary. i don't know though, living my life day to day takes all the energy
i can dredge up. i think i'll just live in the present.
PN>One of the things that you may find more of a help is to trade in
PN>the tricart for a regular power chair. The reason I say this is
PN>because a lot of the paratransit systems can't handle tricarts
PN>and this will open up more means of transit for you.
our paratransit does allow tricarts. if i find out that they have more vehicles
that handle a regular chair, then that will be something to consider.
And do get
PN>that evaluation done for hand controls, worring about driving and
PN>the loss of the ability adds to the stress of driving. If the PT
PN>thinks that you can handle handcontrols that should relieve some
PN>of the worry for you and the stress.
that's on hold for now. i'm not sure if i have the energy to pursue it.
Breath deep and lot and I'll
PN>pray and cross my fingers for you.
PN> Pandora
thanks!
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgEarl.Appleby@hnews.fidonet.org (Earl Appleby) (02/01/91)
Index Number: 13322
PN> Hi Earl, thanks for the nice complement.
My pleasure, your due.
PN> My main philosphy has always been that a person has value by just
PN> the fact that they are a person.
For a new friend, you summed up my philosophy in two great lines.
PN> ...It seems that they want to judge worth on only working capacity.
PN> If you can't work you are not worth anything...
I first learned this lesson as a teenager [many moons ago <grin>] while
working at a state hospital run by those who judge a man's worth by his
contribution to an economy in which they are the privileged.
When they finally spent some money, guess who were the beneficiaries?
If you guessed it was spent on anything that would have remotely
improved the lives of the patients, you're not as smart as I know you
are. It was spent on building a wall so the yuppies' barbecues wouldn't
be disturbed by the sight of half-naked men driven like cattle by
sadistic guards (aka attendants) onto their caged porches...
PN> ...This attitude has severly hurt alot of the elderly disabled and
PN> the severly disabled. This is the system that perpetuates the bed bound
PN> prisoner and the incarcerated in nursing homes.
And kicks folks trying to care for their loved ones at home in the
teeth!!!
PN> At it's worst it has caused people to go to court to pettion for death
PN> so they don't have to live in a lonely bedroom prison being bored to
PN> death and depressed.
Have you ever noticed if some moody teenagers gas themselves to death in
a car in NJ it's a national tragedy, but if a quadraplegic in GA is
driven by his jailors to the despair you so poignantly describe suddenly
it's "rational suicide." That's because the P&P elite ("perfect" and
privileged) look at persons [hell, everything] as merchandise...wrong
color, wrong size, worst of all, "damaged" goods toss it [i.e., him/her]
into the garbage disposal.
These are REAL people, real victims, not armchair hypotheses! My
philosophy of life, as I suspect yours, come from the school of life.
It's a hard school but it's lessons are worth learning. It's taught me,
my family, and my extended family [viz., CURE] that life is worth
fighting for.
PN> And what a waste it is when mostly this does
PN> not have to occur if the agencies and government would provide
PN> the neccessary equiptment and funding for attendants. Pandora
The waste of human lives is the most despicable crime I can imagine and
in America is genocidal in its proportions. I'd like to learn more
about PCAs and specifically how we can help fight for them. [I'd also
like to write you so I can extend beyond the 70 line limit <grin> and
not have to rewrite it like I did this one because my SX or me goofed
<X@!@>]
Life is a battle and my friends and I are in it for the duration. No
pacifists here! Too many of our friends (Karen, Paul, Baby Doe, Nancy,
so many more known but to God and their murderers) have added to the
body count. We shall die as all men. We may even be killed, but we
shall never be defeated because we will never buy their live that a man
or woman should be treated like a dog because he or she is handicapped
or sick...NEVER!!!
Off my soap box [sorry 'bout that] to give you [with Ray's permission,
of course <smile?] a big hug...(((((Pandora)))))
... Where there's life, there's hope. (CURE: 304-258-LIFE)
--- Via Silver Xpress V2.28
* Origin: The Handicap News, Shelton CT (1-203-337-1607) (141/420)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Earl.Appleby
Internet: Earl.Appleby@hnews.fidonet.orgPandora.Nigh@f3.n157.z1.fidonet.org (Pandora Nigh) (02/01/91)
Index Number: 13329
Hi Adrienne, the other day Ray and I started talking about how much
more recently he has had to take care of and how much more he has to
handle emotionaly. When you voiced your concerns over the burden you
felt that you were placing on your husband, family and friends it
started me thinking. When Ray and I first met and started dating I was
very up front with him about my condition and the fact that I will keep
deteriorating as time went on and tried to explain some what in detail
what this meant. He said that he could deal with this. I realise that
what people think sometimes is different then what they can do when the
situation arises. Since recently I have had a major drop in my condition
and he has been responding so well, this has really allayed some of the
fears I held in the back of my mind for awhile, I wanted to know how he
felt about the added work and stress for him and what made him able to
cope. His answer was very simple, he felt that as long as I was not
giving up and would continue to do what ever I could and was capable of
he would stick it out also. He said that the one thing he couldn't and
wouldn't tolerate was that if I just quit and did nothing and didn't
even try to do anything. I brought up the point of what happens when I'm
or if I'm not able to do anything other than move around in my chair. If
he had to handle all the cooking, cleaning, feeding me, totaly dressing
me (he has to help me with some things right now). He said that he loved
me, that if I were to keep my mind active and put in even verbal
instruction on how-tos and support that that would be fine. Just as long
as I don't become a self induced vegatable. I think that most people and
love ones can adjust and learn to go on as long as we are willing to put
some effort forth. I know that while you are in this period of
readjustment and new adaption it will take awhile for you and your
family to work out and settle into what is reasonable expectations for
you and what will be soon. But I really think as long as you keep that
lets go for it attitude they will hang in there with you.
Pandora
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh
Internet: Pandora.Nigh@f3.n157.z1.fidonet.orgPandora.Nigh@f3.n157.z1.fidonet.org (Pandora Nigh) (02/01/91)
Index Number: 13339
Hi Earl, I really loved your comparison between teen suicides and
the disAbled or Elderly, it is on the mark as how the media and society
manage to perpetuate the devaulation of the disAbled. The problem of
Personal Care Attendants is really a difficult one and because we allow
different standards to standard, the Feds limiting the amount they can
be payed and the amount of help toward the cost of paying them varing
from state to state really makes it a big issue. I have the phone number
for cure off your tagline and can call you there or leave a message with
my address. Ray's a very good sport not one of those possesive jealous
types. Basically if he was I'd of dropped him along time ago. That one
of the things that anger me also the concept of being someones property
instead of a real person.
Pandora
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh
Internet: Pandora.Nigh@f3.n157.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (02/01/91)
Index Number: 13342
hi pandora,
yes, i think you are right about the attitude making the difference. i guess
you said it all - i find i have nothing to add or question.
adrienne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgPhilip.Kirschner@f608.n107.z1.fidonet.org (Philip Kirschner) (02/09/91)
Index Number: 13629
Never mind the war.Its defenitly going to generate a whole new group of
people with disabilities caused by tramtic injury!
More people are going to need to volunteer and or become disability peer
counslors to assist the veterns of this war!!
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!107!608!Philip.Kirschner
Internet: Philip.Kirschner@f608.n107.z1.fidonet.org