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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Jack.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!249!9.14!Jack.Colley Internet: Jack.Colley@p14.f9.n249.z1.fidonet.org
Pandora.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh Internet: Pandora.Nigh@f3.n157.z1.fidonet.org
Jean-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.org
Adrienne.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Betty.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.10!Betty.Draughon Internet: Betty.Draughon@p10.f1.n360.z1.fidonet.org
Jim.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.org
Robert.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.org
Adrienne.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.org
Adrienne.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Adrienne.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Pandora.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh Internet: Pandora.Nigh@f3.n157.z1.fidonet.org
Earl.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.org
Earl.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.org
Jim.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.org
Harry.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Harry.London Internet: Harry.London@f1000.n261.z1.fidonet.org
Hot.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.org
Bill.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!810!Bill.Koppelmann Internet: Bill.Koppelmann@f810.n104.z1.fidonet.org
Adrienne.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Earl.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) -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Earl.Appleby Internet: Earl.Appleby@hnews.fidonet.org
Pandora.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh Internet: Pandora.Nigh@f3.n157.z1.fidonet.org
Pandora.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Pandora.Nigh Internet: Pandora.Nigh@f3.n157.z1.fidonet.org
Adrienne.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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Philip.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!! -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!107!608!Philip.Kirschner Internet: Philip.Kirschner@f608.n107.z1.fidonet.org