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Let's Put the Emphasis
on Living
By Linda Lang
Looking at my calendar the other day,
the only markings I could see were for doctor's visits. What
was going on? Where were those dinner parties, movie dates,
concert tickets and just plain evenings out with friends?
I sat down to think. I saw hidden in one corner of my room
a cane, in another, a pair of crutches. Right in front of
me was a walker, and on my desk was a brochure for a wheelchair.
Next to that was a pad that listed all my medications (too
many to remember) and at what times I needed to take them.
It didn't take much of a detective to see that my life had
undergone a whole lot of changes.
I remember the cane! It was a good
friend and helped me to meet my "live" friends at all the
different places around the city. The crutches- well they
made things a little more difficult. I couldn't carry anything
and buses were more difficult but I still got around.
The walker- now that was great for
a while. I could use the basket to hold goodies, even go two
or three blocks for those special flowers I liked. Now it
barely gets me to the bathroom.
Without realizing it, I had allowed
every change in my mobility to make my life smaller and smaller.
I remembered the phone calls asking me to make plans with
my friends.
And I remembered all the excuses I
gave that essentially said “no.” And I wondered why I was
feeling isolated and alone. I could, of course, blame it all
on my new physical helplessness. But that is apparently what
I have been doing and it is making me miserable.
My circumstances may be different
from yours. I live alone in New York City. But in different
ways, many of us do the same thing. We are afraid to make
plans (after all, we may be in too much pain when the appointed
time arrives, or the very thought of the effort makes our
pain level rise). So the friends may stop asking, and family
members may give up.
This is how we begin isolating ourselves
emotionally from family and friends, too. This RSD makes us
feel different from everyone else. We know what separates
us from others, and how we allow those “differences” to cut
us off from others. I see a problem here, and I still believe
there are usually solutions to every problem.
Changing the way I feel about myself
on the inside can take a long time. I want a quicker “fix”,
something that will jump-start the internal journey. My legs
helped me to get from point A to point B, and I just took
that for granted. I never had to think about how I was going
to get somewhere, or whether I could get there at all. The
first “steps” were going to be mental and emotional. Was I
happy sitting in my chair going nowhere? Did I like spending
so much time alone? Was I wasting precious energy wishing
for the past and feeling sorry for myself in the present?
Was I actively cutting myself off from others?
None of these questions are easily
answered if you are being honest with yourself. But I know
that to find a solution to a problem, you have to clearly
define the problem first. And then you need to have the commitment
to follow through with a workable solution. So I have a pair
of legs that don't work too well. The aids I've used in the
past do not work right now. The wheelchair would take the
burden off my legs. It seems like a “no brainer.” But sitting
in a wheelchair psychologically feels very different from
pushing a walker. And it requires asking others for help.
The “asking others” for help thing is what gets to me. I have
prided myself on maintaining my independence through all of
this. But clearly, sitting on a chair in my apartment is not
being independent. I can't buy groceries, cook for myself,
or do any of the day-to-day kinds of chores that need to be
done. Further, I can't go to a movie or out to dinner. I can't
go to see my friends or engage in any of the activities in
the outside world. Looking out of a window is no substitute
for feeling the outside air or the pulse of life around you.
So I guess I've made my decision- now
to implement it. First of all, I need to be able to put something
on my feet if I'm to go outside (they've become too swollen
for even a pair of socks). So I looked to the web. I found
a site called http://www.markellshoe.com.
They make ready -to-wear specialty shoes that can be helpful
to RSDers like us. They have several to choose from. The ones
I chose are almost all Velcro. The whole top of the shoe peels
back so you can accommodate just about any amount of swelling.
I still use lambs wool to help the really sensitive areas,
but they seem to be doing the trick. They also have special
socks. These run incredibly large, so if you order them, go
down a size. By the way, I received delivery in two days.
So, that solved one problem.
Next was to investigate wheelchairs.
I started out on the web and realized there is much more to
a wheelchair then I thought. This new chariot of mine had
almost as many parts as a car (and you can even chose a make,
a model and color). I decided to make it into an adventure
and invited a friend along to help. Hooray-something to put
on my calendar! She came with me to several supply stores
and we actually started to have fun with the whole thing.
When information overload hit, we went out to lunch and laughed
a lot. I now have a better handle on what to order and I'm
actually looking forward to getting my new wheels- the way
I would if I were buying a new car. I still have lots to think
about in terms of how to equip it (and how I'll feel using
it) but I'm motivated to make those decisions quickly.
Now how was I going to put some dates
on my calendar? Again I turned to the web. I discovered a
few sites that were intriguing. There is one called www.independentliving.com.
It has some good information and great links. There
is also a list of restaurants and stores in NYC that are easily
accessible (even tells if they have restrooms on the main
floor). Wendy Ballard writes the website and at the moment
it is rather small. I have asked her if I can drum up some
people to supply more info (much like a Zagat’s Guide, but
for the disabled). So now I need to take some walking tours
to get this information, and to take a walking tour I will
need a "pusher." I could ask friends and make it a fun outing.
We could try out some of the restaurants as a reward. In my
head I have already been accumulating a dream list of places
that I would like to go to for myself. And there is only so
much "pushing" you can ask of a friend. I asked around and
found a few people who would do this by the hour. When school
starts again, I will call the guidance office at a few schools
so I can add even more names to the list. After all, if I'm
going to start going out, I will need some new clothes to
wear. And that could require a lot of pushing! I can now see
myself enjoying a museum or a play (there are special vans
available to get you there).
Perhaps you could start a list of restaurants
and stores where you live and send it to Wendy at www.594.com/wbdo/dine/wca/wca.html.
If you have some ideas of your own on “how to get around,”
let me know so we can all share them. If you've found other
footwear that works, I'd love to hear about that, too. Send
it regular mail to RSDSA, P.O. Box 502, Milford, CT 06460.
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