THE TRIALS OF ST TIMMY'S 36 ================================================================= THE TRIALS AT ST TIMMY'S -- The Continued Saga of Paul Ess's Rehabilitation ================================================================= In today's news of obnoxious old farts, they took Mr Salazar off the $30,000 glass bead bed. He's still in a back room with no one else. Who else could stand him with all that roaring he does? If there were cosmic justice, they would put Buzzard in with him and let them holler each other to death. Linda was feeding Buzzard the other evening and he was hollering HELP! HELP! HELP! YOU SONOFABITCHES! all through the meal. He's gone in the cranium and has the sense of a broken Edison cylinder which he probably predates. I found this in another usenet group. By the way, this is episode 36. Sat, 17 Aug 1996 15:54:04 misc.handicap Subj: Support Groups and/or Resources for Recently No responses We're looking for all kinds of general support and resources for the *RECENTLY* disabled. Close to a year ago, my wife was told (basically), "Gee, you're disabled. You'll never walk or work again. You are not a candidate for knee or limb replacement. See ya 'round." We have looked all over the area for a support group, or something that can tell you: (or at least point you in the right direction) 1) How to deal with this! (psychologically). [The staff shrink at the big city hospital about poisoned me with Prozac. Some how-to-deal-with-it-therapy!] 2) How the husband deals with it! Much greater demands on time. Tremendous cost with tremendous loss of income. It seems like it should almost be a "grief" support group --- something that deals with "loss." [When you haven't got a spouse and you call in your best friend because you don't know who else to call when they tell you you are a lot sicker than you think you are, there ought to be some support for that friend. It has bothered me long and often that I haven't been able to do anything to help Mr Cheez and Kooky deal with this. I can't think it's any joy having a bitchy queen friend made suddenly into a gimpy bitchy queen friend. Mr Cheez won't admit a thing, but I've seen the hurt look in his eyes a couple of times when things didn't go the way he expected them to go.] 3) What kind of assistive aids are available? What's needed? How do you "shop" --- when you do find one, or two within a 100 miles. They all have their own vested interests and profits to serve. [Everybody connected with my gimp journey has had an agenda and vested interest and their own profit to serve.] 4) Why doesn't the hospital provide a 1-2-3 check list: [Why not, indeed?] a) Occupational therapy b) Pscych counselling, encouraging, support [They farmed me out to The ERR for (a) and (b). Both were less than helpful or pleasant. Both benefitted the caregivers's pockets far more than any intrinsic benefit to me.] c) Get you involved in a group with similar patients. [At no time have I had meaningful contact with fellow gimps except a limited amount through email. I've been told that the only way to really learn how to live as a less-than-normal is to learn the trucks from one who already knows them -- that an occupational therapist doesn't know much because he or she doesn't live the gimp life. And I recently saw a program for gimps on teevee which conclusively proved it is gimps themselves who invent and implement adaptive equipment!] d) Set you up with a visit from your nearest Super HealthStore, or whatever. [I was never given the opportunity to choose from a variety of adaptive equipment and living aids. In many cases, I was presented with a device and told Here: Use it. If it wasn't adequate for my needs or style, I was made to feel I was the inadequate one.] e) A physical therapy engineer visit the home and make suggestions (and again resources to build a wheel chair ramp, changes in the kitchen, etc. Stair lifts? [This is moot unless and until I latch onto an ADA-compliant place to live. As it is, I had no cooperation from my landlord in adapting his building to my needs. He talked a great line but it all turn out to be smoke up my ass. I wasted a lot of money holding on to that apartment during my early convalescence. I had the intent to return where I lived and resume my lifestyle with only necessary changes.] f) A PT evaluation of your physical needs. Were you an active person? Do you have partners, friends to get you out? or do you need to have more independent mobility aids. Someone to give you the proper 'mind set' to avoid sticker shock when you start shopping for power chairs, vans, etc. [I know what the sticker shock it. The prices for this equipment are outrageous and calculated to gore insurance companies. If your insurance company won't pay for it and you are not well- heeled, you are fucked.] g) Are there any tax breaks for disabled? [Good question. I have the feeling many gimps earn a subrosa living they don't report because equipment maintenance can be expensive and out-of-pocket. It may be necessary to break the law in order to survive.] h) What about the Social Security Disability nightmare? Do you have a local advocate? or do you have to have a lawyer after the first and second rejection? [I get to find out in my own case come next February.] I know most of you have 'been there' - but it seems so overwhelming and there doesn't seem to be *any* place to turn locally. Certainly this newsgroup goes a long way - but there really needs to be something on the local level, too. Someone you can pick up the phone and get an answer --- someone you can talk to when you're bursting in tears after visiting the Rehabilitation Therapy people to find out what's available, what do I need, what's the price ---and they tell you, "O well you need to make some of those decisions? What are you looking for?" Or after you spend 3-4 weeks to order ("Sorry, we don't keep that one in stock; It's our most popular model.") just the right model walker. The one they tell you on the phone has pressure brakes ... so now it's in ... you finally arrange a ride to get to the next state to pick it up .. and find it only has caliper brakes on the handle and you're arthritis won't allow you to use them. Forgive me if this sounds like I'm venting, or angry, or bitter. I am, of course, but don't mean to sound like it. Just seriously looking for some type of support. * * * * * Mr Nehru down the hall was blasting his television, so I went over there to tell him to turn that shit off til I saw what it was. He was running a videotape of The Sound of Music. It was at the part where the cute telegram delivery boy sings and I was stricken with a good case of the hots. So I was nice and didn't yell at the dothead. But I heard something else which needed my expert investigation. Mr Salazar, who was taken out of the compressed-air bed a couple of days ago, appeared to be about ready to fall out of this conventional one. He had one super long leg up in the air, an arm hanging out, and his head way off the pillow and turned toward me. His eyes were closed and his mouth wide open in the inimitable old-tard-catching-flies pose. His breathing was quite loud and congested. I noted they had a suction machine in there. I thought to myself, He won't be with us much longer. Later in the evening I saw nurses skulking up and down the hall with plastic bags. I hadn't heard the old boy groaning and singing for quite some time. The charge nurse came back up the hall pushing one of those tube feeding pumps on an IV stand. They don't routinely remove those from a room because you don't get off of a GI tube until-- Then it clicked: He's croaked. A look in his room this morning confirmed my suspicions. Nobody home anymore. I wonder if they called the same fat queen undertaker with the monster tits we had so grimly reap at The ERR... Mr Cheez came by today with all my mail, two letters. Oh, well, it was nice to hear from a non-net dude who hasn't written in weeks and weeks. Another fellow I'd like to hear from used to seem quite interested in my predicament. When he found out I was still not living independently, I think he gave up on me. Kewl. What if _I_ gave up on me? After my whipping his ass at dominoes, Mr Cheez went to KFC to get lunch. Ah! Real foooood. I had crispy dead bird strips with mustard sauce, and cole slaw to keep it from congealing. KFC macaroni and cheese is certainly not homemade, but it beats the pasty, starchy-tasting blob served up here as such. Meanwhile, nursey brought my noon meal tray. The Polish kielbasa wasn't bad but the saurkraut (canned) with it had been thickened by the cook again. He wanked into this the way he does the beets and the apricots. Mr Cheez took a bite of the kraut and immediately spit it out. I get the feeling he doesn't appreciate the cooking here, and I wonder why... It left such a bad taste in his mouth he had to get out his little pipe and do a bowl. About this time, George came out to smoke. George says, The pipe, the pipe. Mr Cheez chuckled. I grinned like an idiot. George says, The mary wana, the mary wana. Yeah, says Mr Cheez, You want some, George? George toked. George held it in real good. George was happy the rest of the afternoon. Mr Cheez must've got pretty fucked up. Maybe this is howcome after lunch and more dominoes, he creamed my ass but good! (Let's clarify that: He creamed my ass at dominoes.) Jenny is a nice old lady of 87 down the hall. She has a kewl roommate who seems young for 91. Olivia has horn rim glasses which are way big for her face. She peers at you like a wise owl. Jenny never complains about anything. She's probably the most untasteless person in the place. Her daughter and son-in- law visit about twice a week. They bring her other child, a son, with them. The son, I swear, is whose picture you see when you look in the dictionary under 'retard'. Can you imagine a 70-plus old man with that tard look in his eyes and absolutely _no_ chin? He shuffles along behind the rest like a zombie. He doesn't make any sense at all when he tries to talk. What a crutch to bear for Jenny. On Good Morning America they had this family from Florida whose autistic spawn fell in a bog and was in danger for four days of becoming alligator lunch. He had that same vacant look. I guess the reason the alligators didn't eat him is they want people of good taste and not just people who might taste good. There's a new man in where The Chink used to be. This one is a garden-variety European whitebread but he had the teevee on an independent ethnic channel with the Indian/Paki music videos going. I held my hand mirror around the corner so the squally, wobbly cutting voice of some Hindu screen goddess could etch a pattern for me. Queen Bee is still reigning supreme. She finally brought her son in to see me. He has the kewlest Canon laptop computer to carry around with him on his consulting job. He has custom software in it commissioned by his company. The software is a tailored database for keeping customers's machinery data at hand. The problem with it is the person who used this computer before he did. The guy didn't know jack about computers and got Windows all fucked up. So I amazed him by arranging all his icons and sizing all his windows for minimum dicking around with the track ball. He was duly and truly impressed, and Queen Bee perched on my bed just beaming at "her boys" like she had good sense (which she does most of the time). This model Canon has a built-in flatbed inkjet printer. The whole package works as slick as snot on a doorknob and I want one! =================================================================