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Totally awesome, Peter! I am SO excited about your snip. I’m much looking forward to following in your footsteps as soon as I can afford it. In the meantime please tell us all you can about what you experience emotionally and physically throughout the whole transition.

All best wishes.

~ Chloe

This is great to hear, Peter!
Much support to you as you move towards authenticity!
~Alicia (Danielle Sainte-Marie)

Hi Peter,
would you give me some clarifications? What kind of surgery are you talking about and what assistive devices would you be using afterwards?

Personally one year of full pretending isn’t that much. Three months is a fairly short period. My experience is that at about three months I was getting into a more comfortable place with the way people were treating me as a PWD. Three months is still the moneymoon period in my opinion when it comes to your own disability and a rather hard time when it comes to others.

Good luck with everything. :-)

Yes, Chloe, I’ll try to report back at every stage.

What kind, Elizabeth? Well I thought ‘snip’ would have given it away. The others are more like ‘sawing’. Anyway to answer your question correctly, it’s called neuro-surgery.

As for assistive devices, so far it’s what I’ve always been using. One problem area here are my Wranglers; I can’t get into the jeans version with a brace and I can’t get into the Jeep version without one!

The trial period could be flexible. If I were to advise a youngster I would definately say 12 months. In my case we’ll see. The only problem I have is that I cannot manage money so when I have some I tend to loose it very quickly without knowing where it’s gone instead of spending it on something sensible like ‘snipping and sawing’.

@Peter: Sorry, I am a very visual person so for me very concrete explanations work the best. Snip is a blur word for me. Neuro-surgery is still quite a blur. Severed spinal cord at T12 or LBE amputation are clear. I guess that’s what I am asking.

Elizabeth, That’s OK, I’m not a technical person either and I really don’t know what T12 is! The main thing is that I know I can get what I need.

@Peter: well, good, whatever it is :-)

Gordo. I don’t think pretending just at school is really a test for proving one wants to be paralysed. It’s just the fun bit. It doesn’t include getting in and out of bed or the bath, getting dressed etc.

Were you 24h per day for that additional month?

Elizabeth, next to my blog on the right.

Peter I hate to ask such a blunt question especially considering I don’t know the full story but if you don’t know what T12 is should you really be thinking about surgery right now?

Sophie, That was a joke. I do feel that a lot of people know exactly what they want and where, but do not necessarily know about exactly how the surgeon will go about it. Like when I buy a car I know what I want it to do but I don’t know how it does it.

Gordo. So were you decided at the end of that month or do you still have doubts?

That’s what I thought Gordo. Others in the groups have confirmed that 1 month should do too. I had previously planned 3 months and I’ll probably stick to that, not least because I need the GBP or the Euro to stop being so impaired. Otherwise surgery is going to be effectively 20% more.

If you pretend full time for longer than a month, your adjustment after surgery might be easier. You will need to adjust to the physical reality only. Adjusting to people’s idiocy takes more than a month or three, in most cases.
I am with Gordo – wheeling isn’t always fun. We are treated like a crap often. I don’t wheel for fun (though it can be fun), I wheel to be myself.

I wonder – those of you being full time public wheelers or PWD, how long did it take you to come to a relative peace with people’s stupidity? For me it was about four months.

Thank you Elizabeth. I’ll put it to the vote I think, as I’m getting wildly different answers and take an average. I’m not sure about Gordo as he said he agreed with you and then said 1 month was enough. I wonder what Sophie’s and Chloe’s ideas are on this.

Would you mind starting another topic for ‘people’s stupidity’ Elizabeth – Thanks.

Dear Peter,

My impression is that you have already thought everything through at great length, and that you trust your own intuitions. You are stable, calm, and not acting out of panic. I think you know that you don’t need our votes and you don’t need our permission.

You mentioned age earlier, and I agree that this factor can make a difference. You and I are of very similar age. There are several different factors here. With age comes increasing self knowledge. There is consequently less guesswork when it comes to making decisions about what one is going to do. Another age related factor, at least for myself, is that I have simply already done everything I might wish to do with my legs. I have run, danced, skied, jumped out of airplanes, climbed mountains. If I lose all use of my legs today, I’m not going to be thinking “Gosh, I wish I had done blah de blah”. A third age related factor is that time does indeed run out. You and I can see the end of middle age on the horizon, even if neither of us thinks, acts or dresses like it.

My recollection is that you have have been wearing leg braces a significant amount of time for decades. You are right, 24 hours throws in some extra things that one is otherwise tempted to get lazy about. This is one of the reasons I get a lot out of my boyfriend staying the night. It leaves me with no choice. Nevertheless, in my opinion all that part time experience does not count for nothing.

Reading between the lines, you are planning at this point to get one leg paralysed, but not have your left hand chopped off. Thus you are not going as far as you might all at once. I have a similarly conservative plan. I intend to get just my left leg paralysed initially. Decisions to go further than that will be made after significant time has elapsed post surgery. If you were going for complete paraplegia I might urge more caution.

As you said yourself, ultimately you will simply KNOW when you are comfortable with, and ready for, surgery. I’m not convinced that a one size fits all time line for full-time real life experience is necessarily appropriate. I’m biased of course, because it’s already a no-brainer for myself. If the surgery for getting my left leg paralysed came up tomorrow, it would require no more thought, no further experience, and no emotional preparation. I would be nervous; but then I have somebody to hold my hand and tell me it’s okay, as do you.

~ Chloe

Chloe. I really must revise on the profiles. I was convinced you were 28-30. You are definately young thinking like me!

You are absolutely right of course but being ever surrounded by do-gooders I tend to listen because one is never 100% sure. And I still have time money/exchange rate wise. At the moment I’m paying the Greeks’ taxes.

Yes it will be the leg. This is weird because every time I do a personal poll of about 30 points for and against leg and arm, the arm wins, hands down. But, and it’s a big ‘but’ the arm only happened in my 40s. So final decision will be after the tests tomorrow at San Diego.

Currently I’m only prentending 3 days out of 4 but it is 24h although I expect I move the leg in my sleep. From the second week of June it will be 24/7.

The wheelchair will be needed for long shopping trips and the crutches will be needed at home which is non-accessible as is the Jeep. Totally crazy idea that, but I’ll get over the Jeep – not the BIID.

Huge quantities of thanks and hugs and stuff.

Peter

Peter. Toss the jeans and invest in skirts. It works for me. That way you’ll still be able to use the Jeep.

28-30; ha ha ha! What are old people supposed to be thinking about anyway?

It’s okay to move your leg in your sleep. It’s just muscle spasms.

Be sure to tell us all about your adventures in San Diego. I’d give an arm and a leg to go get those tests done.

~ Chloe

A little update on full-time…

It’s not entirely full time yet, about 3 days on, 1 day off on average. It’ll be all the time when I move in the next couple of weeks. but I’m doing it quite a lot on territory where I’m know as people are used to seeing me limp with dystonia. Although this condition does not require a brace on the leg, no-one knows that.

The only downside is the brace itself. It’s a Bob special and while it’s really well made, I did the mesuring myself and so it tends to fit where it touches. I do get quite a lot of chafing as a result. But it’ll do for the moment. If I have a long distance to do, there’s always the supercharger Barracuda at hand – permanently in the car. And if I need some relief at home, there are always the fore-arm crutches.

Chloe: Me in skirts??

I don’t want to write about the trip to San Diego but I will say that it went well inspite of being quite gruelling at times (3 whole days). The team there were absolutely wonderful and very appreciative of my participation.

@Peter: Okay, I admit it. Today I’m wearing mens’ jeans and a mens’ denim shirt. Sometimes I have the urge to get really dikey.

Chloe, Dikey sounds good. You can come and help me carry lumber at the new house!

Bad news this morning… I thought I’d sneak downstairs and take a shower in AB mode, having ripped the stair hand rail off the wall yesterday. Hubby caught me cheating. He said “That’s it! No operation for you”. He was only joking BTW. He’s now fully accepted what is going to happen.

Full-time update.

I’ve now completed 18 days out of 25 full-time. The past 7 days were consecutive. i only cheated once but now I’ve learned that you always leave the crutches at the place where you remove the brace and if you forget, just crawl.

What has happened? Well, it’s already become second nature. once I unblocked the knee and I collapsed. So much has my brain just forgotten about the leg muscles. So I will continue. I will at some stage disappoint hubby when I tell him that full time pretending has done nothing for my BIID. My brain still tells me I’m a fraud and when I see dozen of free blue parking spaces and don’t use them I feel awful.

Taking the BIID level on a scale of 1-5, when I started pretending it dropped to 1 or 2 but after 4 days it hit 5. Now it’s settled at 4. it’s still very much there but at least I’m confirming that having the present handicap is no big deal and I can go for the needed disability in all confindence.

I’ll report back after I’ve completed 3 weeks or 1 month.

Am I like the youngest one here?

Hmm …

As far as it goes – when I do start wheeling, I’m more afraid of being caught due to what happens to my legs.

I shake them. Uncontrollably … Like – they just HAVE to do it. Its due to schizophrenia, i think? I’m not 100% on that.

Anyways ..

I’m also worried when I do start wheeling things like going to resteraunts. I’d have to choose one with a pull out chair or practice a lot as far as transfers goes.

Did it take ya’ll a long time to get used to everything? O_O;;

Anyways. Good to hear Peter :) I hope your able to achieve what you desire <33

Rhayven, The transition has been easy for me as 1) I’m changing locations and 2) I have a neuro problem that means that I walk with a limp and have an arm that is quite spastic and uncontrollable at times. So people are used to seeing me struggling most times.

I am indeed able to acheive my desires but it’s not a desire – just a necessity.

Yeahh – my wording is sometimes not accurate >_<

But anyways.

It just annoys me y’know? I mean – paras aren’t supposed to be able to move their legs unless theyre having muscle spasms.

One day I’ll be able to achieve what is necessary for me. Until then – Well, I guess I’m a bit different of what most people would consider Para :)

*nods* Thanks ^^

@Rhayven: I think Tora is younger than you, but she’s been a bit quiet recently.

I’ve never had to transfer at a restaurant. You can either take the place of a pull out chair, or wheel up to the end of a booth if there’s room.

I dont know that I’ve spoken with Tora. Hmm.

But if she is that makes me feel a bit better :)

I know some restaurants – Like chilis, and shit like that don’t always allow that. I’m sure they’d probably accommodate but O:

I Know one of my BIID friends got really pissed because she went into a Chilis and had to transfer and all. And when she was done with her meal, She couldn’t get out of the restaurant because they hadn’t brought back her WC O:

Accessible seating is another joke. In USA, there has to be 20% of seating accessible, even where you have fixed seating, with enough clearance for the chair. Enough clearance is almost always problematic. They can’t demand a person to transfer, they need to find some better and lawful solution. Not sure what are the laws in other countries.

She transfered because the seating was fixed. Like .. The chairs and everything :/ It sucks O_O;;

I’ve always wondered if ya’ll use the blue spaces.

I know a lot have “towing enforced” signs and will tow if there is not a handicapped license plate or sign plate thing in the window.

I don’t have the parking placard so I don’t use the accessible parking. But am tempted to get one for those moments when I don’t have my wagon (wc in the trunk) but a smaller car where I have to put the chair on the passenger seat and then hope that nobody will park too close to me. Also at night it would be very useful.

There is a website caughtya.org where people can submit photos of illegally parked cars.

I see.

How hard would it be for someone wheeling full time to get one? I’ve never really looked into it. I mean, hell I dont drive so …

I wrote about the placard issue in “Parking Permit” (4/22/09). There are a few things I would put a little differently now. For example, I said “I don’t have a physical need to wheel”. A few months later my GP convinced me otherwise, with regard to my back pain. Indeed, the indications she wrote in her prescription for my wheelchair were “Leg Weakness, Fibromyalgia and Back Pain”. I suspect she had the same real physical conditions in mind when she showed no hesitation in giving me the documentation for a parking permit. I’m sure it also helps that she sees BIID as a genuine serious condition, even though she can’t put it in the documentation.

It seems like a good many of us have actual physical conditions that cause some degree of disability. Make use of this. Give your physician something to hang their hat on when they write that you need a parking permit.

*Nods* Well, I dont know that I can drive anyways …

I dont know … I mean, would they look at my mental disabilities and deny me for a license?

I do know I’m scared to death by cars and really any vehicle :/ Its why I havent gotten my license yet.

Badges are not usually for cars and drivers. They are for you. If someone drives you can use your badge for them to park.

True that.

When I do start wheeling and all, I might try and get one. But until then …