[nabs-l] Could someone lend me a hand, please? (Question about juggling multiple items)

[Jewel S.]

Hi all,

The thing that follows you around sounds really cool, like a motorized
pack mule!

As for my reluctance to use a wheelchair...I don't know. It's one of
those things. I had absolutely no problem using a white cane or
learning Braille (not that I had much choice if I wanted to not fall
and wanted to read!), but I am very reluctant to use a wheelchair. I
was reluctant to use a support cane for awhile, because I felt I was
simply too young to need a cane. I'm only 25 years old! But I finally
had to just accept the need because I found that it took me a whole
lot longer to walk somewhere on my bad days if I had a cane, and I was
veering and stumbling all over the place.

I do walk, it's just very difficult at times. My chiropractor told me
that I should stay away from using a wheelchair for as long as
possible, because once I start using a wheelchair part-time, my body
will deteriorate faster and I will have to use a wheelchair more and
more until it is full-time. I want to be able to walk. I don't want to
be a wheelchair-user full-time. I want to walk and jog and dance and
participate in sports like goalball and fencing. It's so hard to think
of myself being unable to do all these thing when I'm "a baby" as
everyone calls me (I look 16 instead of 25).

I guess it really is the stigmatism of the wheelchair, like white
canes or Braille. I feel that using a wheelchair more than at the mall
or for long distances will mean people pity me, think I can't walk,
that I am helpless. I already seem pitiful and helpless to people.
People already look at me strange because I ask them not to touch me
(patting my arm, holding my arm, patting my back or anything like that
is very painful). People already look at me weird and already pity
me...I feel a wheelchair would just make it worse. And when I stand up
from that wheelchair, people will tell me "You can stand, you can
walk. You don't need that chair!" They'll say I'm faking to get free
rides so to speak.

And then there is the practical side...when I'm not suing that
wheelchair, where does it go? When I'm not using my support cane, it
folds up and goes in my bag (it's a folding support cane from the NFB
center). But you can't fold up a motorized wheelchair. You can't stick
it in your backpack when you aren't using it. I'll end up using it
when I don't need it.

Further, there is the worry about mobility and orientation. I get so
confused when I'm walking...I can't imagine how confused I'd get when
in a chair! I'd have to learn O&M all over again, and the instructors
around here don't know how to work with a person in a wheelchair, so
I'd have to go away for it, and that would take me from my friends and
my boyfriend and my kitty cat...

I guess it's just that "scared" factor. I don't want things to change,
and I don't want to be helpless. I know I need to accept that it's
getting worse, that I'm having more tremors and the bad days are
outweighing the good these days, but I don't. want. to. Would you? If
you were 25 years old and had your entire life ahead of you, would you
want to have to accept that you'll never be able to run again (I
haven't been able to run since junior high school)? Would you want to
have to accept that you could never fence again (I used oto do
medieval fencing...about 7 years ago, before it got realy.ly bad)?
Would you want to have to accept that you can't walk without pain,
that you can't do things for yourself, that you need people to guide
you around because otherwise you fall over? It's just...well, it's
just not fair, though I know life's not fair.

And t hat's my rant about my physical condition, which is still of yet
diagnosed. It just keeps getting worse, and I'm constantly on pain
meds, but they still haven't figured it out. They just can't figure it
out, though several have suggested fibromyalgia.

It's...just so dang frustrating. Now, I am going to go take a bath and
mpe about my problems and leave you guys out of it

Hugs all around,
Jewel


On 8/4/10, sarah.jevnikar at utoronto.ca <sarah.jevnikar at utoronto.ca> wrote:
> Jewel,
> Try writing to the blind rollers mailing list; perhaps they have
> life-tested solutions.
> Your reluctance to use a wheelchair has come up before and I
> completely understand why you wouldn't want one, but if it can improve
> life in some ways perhaps it could be a temporary solution?
>
>
> Quoting Robert Jaquiss <rjaquiss at earthlink.net>:
>
>> Hello Jewel:
>>
>>     Some years ago, I heard of an electric golf cart that would follow
>> a golfer around. The golfer wore a small device attached to his/her
>> belt and the cart followed it. I have no clue if this type of device is
>> still on the market. I'll check.
>>
>> Regards,
>>
>> Robert
>>
>> ----- Original Message ----- From: "Jewel S." <herekittykat2 at gmail.com>
>> To: <nabs-l at nfbnet.org>
>> Sent: Wednesday, August 04, 2010 3:47 PM
>> Subject: [nabs-l] Could someone lend me a hand,please? (Question about
>> juggling multiple items)
>>
>>
>>> Hi everyone,
>>>
>>> As the title suggests, I need a bit of help...some advice, really. But
>>> I sure wish someone could literally lend me a hand. I need that third
>>> hand something fierce!
>>>
>>> Here's my dilemma. I will be starting school at the local community
>>> college in two weeks. I have a very nice High Sierra rolling backpack.
>>> It has a retractable handle with a T-grip which makes it easy to pull.
>>> However, I also have a long white cane and a T-grip support cane. One
>>> hand for the white cane, one hand for the support cane (I have tried
>>> carrying things in my right hand while using the support cane and I
>>> simply can't put enough weight on the cane to use it properly if I'm
>>> holding something...if it can hang on my wrist, and is not too heavy,
>>> I can do that, but it must be very light, such as a bag of light
>>> groceries {a bag of papertwoels, a bag with shampoo and conditiner,
>>> some small grocery items, etc.}, and one hand for the rolling
>>> backpack. That just doesn't add up to two!
>>>
>>> My primary doctor and my chiropractor have warned me several times not
>>> to put anything more than a few pounds on my shoulders or back, and
>>> definitely not a backpack full of books, so carrying the bag on my
>>> back when I use my support cane is out of the question. I have several
>>> slipped discs in my neck and severe misalignment in my back and hips,
>>> so I have to be careful not to carry too much. I also have problems
>>> with my arms and wrists; if I carry something heavy on my wrist or
>>> forearm, it will start tingling and sending lightning bolts of pain up
>>> and down my arm. Further, with my bad hips and knees, using a waist
>>> harness of some sort to pull the backpack seems out of the question as
>>> well.
>>>
>>> I brought this concern up to the Disability office at the college and
>>> they and I together could not think of anything to solve my problem. I
>>> suggested a volunteer pulling my bag from class to class, but they
>>> said they do not have the means to find someone or schedule such a
>>> volunteer's time. I am going to ask my VR counselor and my O&M
>>> instructor about it tomorrow, but I wanted to ask here. Surely I'm not
>>> the only one who has had this dilemma? Are there any of you out there
>>> who use both a white cane and a support cane with no hands for rolling
>>> backpack or other items?
>>>
>>> Any advice, suggestions, or ideas would be invaluable to me, as I'm
>>> truly at a loss. I didn't even think of it until yesterday when I was
>>> at the college and tried to do it and couldn't, and was in no
>>> condition to walk without my support cane without stumbling and/or
>>> falling often.
>>>
>>> ~Jewel
>>> Check out my blog about accessibility for the blind!
>>> Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com
>>>
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>>
>>
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-- 
~Jewel
Check out my blog about accessibility for the blind!
Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com