Usually I try to post something brutally honest or ridiculously irreverent or boring or unsubtle. Anything you want to add? Feel free.
Today I'm within my rights to inject what ever I want.
I'm convinced that my journey would have ended long ago if I'd known near the beginning exactly where I would be now. The fear of unknown is far less convincing than any actual manifestation of such. The imagination is but a trifle, feebly knocking at the door of reality.
The blistering attack that now approaches four years in its barrage has forever changed me in ways I'm still unable to fathom. I've an unequal led time to ponder, yet find myself trolling Facebook and stirring the pot full of easy pickings, drawing out conversations that would never exist in the real world with the principals drawn together in the social medium. Though I loathe my actions I relish the consequences.
What about me? How do I feel? What hurts?
I find it unattractive to share what is so unattractive to me. Put that on your hoop and roll it.
If I expound upon my condition it will put me in a mind to think about it and that makes me sick. Sicker. Shit. Now I'm screwed.
Reset. I've said this before. It will always bear repeating.
The single most devastating factor in the ALS experience is in the design of the diagnosis. It transforms the human condition from concerned to destroyed in a matter of seconds. Most will never recover from that. I'm living proof that, despite my tenacious demeanor, the words and actions have torn a part of my confidence to shreds. I'm certain I will never fully recover from the initial statement and ensuing protocols.
Stress is bad. You have 2 to 5 years to live. Quit your job and smoke on that, you poor, unlucky guy. What insurance do you have? Eat shit, any shit, get fat and you'll live longer. You live longer, we look better. Prepare for your coming doom by meeting the wheelchair guy, the nutritionist who has a general plan for all ALSers: don't detox because you will lose weight, don't worry about what you eat because you will stress and that is bad for you. Oh, by the way, don't forget to speak to the social worker (exactly what does that mean?) about your living will and DNR options and your wheelchair choice as being the proper design for your eventual core failure and extreme immobility since Medicare only allows you one. Get your affairs in order so you can enjoy what little time you have left. Let me introduce you to the feeding tube guy (you will live longer with one) and the vent guy (with a vent, you will boost our numbers by living longer). Hey, here's the number of a guy who sells wheelchair vans (on your own dime, of course). You want grief counseling? None. You want mental health counseling? Got nothing. You want your wife to be paid to care for you? No, but we can recommend an agency.
On and on.
This crap all happened in the first three weeks. It's taken a load of bandaids to suppress the damage and the wounds leak even now. Especially the one between my ears.
If only. Whatever.
Today I'm within my rights to inject what ever I want.
I'm convinced that my journey would have ended long ago if I'd known near the beginning exactly where I would be now. The fear of unknown is far less convincing than any actual manifestation of such. The imagination is but a trifle, feebly knocking at the door of reality.
The blistering attack that now approaches four years in its barrage has forever changed me in ways I'm still unable to fathom. I've an unequal led time to ponder, yet find myself trolling Facebook and stirring the pot full of easy pickings, drawing out conversations that would never exist in the real world with the principals drawn together in the social medium. Though I loathe my actions I relish the consequences.
What about me? How do I feel? What hurts?
I find it unattractive to share what is so unattractive to me. Put that on your hoop and roll it.
If I expound upon my condition it will put me in a mind to think about it and that makes me sick. Sicker. Shit. Now I'm screwed.
Reset. I've said this before. It will always bear repeating.
The single most devastating factor in the ALS experience is in the design of the diagnosis. It transforms the human condition from concerned to destroyed in a matter of seconds. Most will never recover from that. I'm living proof that, despite my tenacious demeanor, the words and actions have torn a part of my confidence to shreds. I'm certain I will never fully recover from the initial statement and ensuing protocols.
Stress is bad. You have 2 to 5 years to live. Quit your job and smoke on that, you poor, unlucky guy. What insurance do you have? Eat shit, any shit, get fat and you'll live longer. You live longer, we look better. Prepare for your coming doom by meeting the wheelchair guy, the nutritionist who has a general plan for all ALSers: don't detox because you will lose weight, don't worry about what you eat because you will stress and that is bad for you. Oh, by the way, don't forget to speak to the social worker (exactly what does that mean?) about your living will and DNR options and your wheelchair choice as being the proper design for your eventual core failure and extreme immobility since Medicare only allows you one. Get your affairs in order so you can enjoy what little time you have left. Let me introduce you to the feeding tube guy (you will live longer with one) and the vent guy (with a vent, you will boost our numbers by living longer). Hey, here's the number of a guy who sells wheelchair vans (on your own dime, of course). You want grief counseling? None. You want mental health counseling? Got nothing. You want your wife to be paid to care for you? No, but we can recommend an agency.
On and on.
This crap all happened in the first three weeks. It's taken a load of bandaids to suppress the damage and the wounds leak even now. Especially the one between my ears.
If only. Whatever.
For once I have to say I believe you have understated the reality of those first weeks. World be warned!! I WILL change how this is handled. Unbelievably cruel and insanely harmful on every level. When I objected to their helpful ALS support paper filled with those sad brainwashed not as newly diagnosed into playing nice listing how they have "given up" all the things they love but now they "get" to spend more time with their family and have become good listeners, their reply was " I'm sorry you aren't ready to hear that truth yet".
ReplyDeleteYour body and mind are meant to heal naturally- unless we are doing things to stop that from happening. This could be due to ignorance or lack of information or avoidance. Let's stop the seeping and leaking wounds and address them so they can heal. Sometimes it hurts to pull the bandaid off to clean out the wounds but in the long run it's worth it. Otherwise it will just continue to fester.
That advice to eat whatever I wanted because to lose weight is a bad thing? The worst advice I ever received. I followed that advice and ate everything I ever loved -- all the salt and chocolate I ever desired. I got obese and I developed hypertension, thyroid problems and high cholesterol and tri-glycerides. Then I was told to tube-feed -- and the stuff I had to put in the tube had a mixture of different types of sugars and chemicals. Another mistake !! I am still told at clinic by the "nuritionist" to tube-feed because I am spending too much energy eating by mouth. Guess what!! I read everything I could about nutrition and dropped weight and was told not to drop any more weight. I dropped more weight and ignored what they said about tube feeding. I'm sorry but I didn't like being obese and having to wear clothing three or four sizes bigger. I still like to look good and don't want to have a stroke and diabetes. When I told the nutritionist that the tube feed was full of sugar, she said "why is that a problem?" and when I told her I didn't want diabetes, she said "If you get diabetes, we will deal with that. There are tube-feed formulas for diabetics." Totally ridiculous!!!
ReplyDeleteI am soooo glad you wrote this Fern. The more NONE ALS people see what is really going on here the sooner we can change things. We are so busy just trying to make it through each day we don't have time to go knocking on all the political doors to get them to stop killing us off with terrible advice. Power in numbers. I find it amazing that ALL ALSers get the SAME terrible advice. Like they are told read this out of the BAD ADVICE ALS HANDBOOK!!! How can people ALL OVER the US get the SAME terrible information? Anyone else who knows someone with ALS who can relate to this please chime in. What Fern wrote is exactly EXACTLY the same thing we were told down to the it's okay if we GIVE you diabetes cause we have a pill to fix that problem.
DeleteFern, I hope it's okay to post your reply on My Blog too.
DeleteLive your life as normal as possible. With Amy, I believe she will keep you on the straight and narrows. Doctors are PRACTICING PHYSISIANS and we are the GINNY PIGS. They will try previously practiced stuff or they will crap shoot the dice ad pick a remedy. LOL Salim
ReplyDelete