Hi guys! Hope you all are as well as
can possibly be! Within this particular post, I would like to talk
about something in which I find to be a particularly distressing
matter at present: finances. I know I am not alone in this plight,
and that many others struggle in this regard as well. The current
challenge for me is finding a job that will accommodate my current
medical needs; not to mention, trying to figure out if seeking one
out is truly even a viable option at this point in time (given my
erratic and unpredictable medical circumstances).
Let me preface the rest of this post by
saying this: after battling for many years to obtain it, I am on
disability. It was a long and stressful battle, and I could not have
obtained it without the help of a competent lawyer, my parents, and
two others well versed in social security. It was, indeed, much
overdue by the time in which I actually received it.
I am not a lazy person; I come from an
extremely hard-working middle-class family. My dad, up until last
year, was working four jobs simultaneously. He had no days off, and
it was hard to see him endure his brutal work schedule for so many
years, even though he hardly ever complained. Instead he would say he
felt lucky to have the opportunity to wake up each day and work... in
that way I somewhat understood him, but it was still not easy to
watch a love one break their back day after day to meet basic
familial needs. Then there was my mom, who juggled two jobs of her
own aside from being there for me through every single
hospitalization. My eldest sister went to school full-time at an
excellent (challenging to get into college) school and worked
full-time as well while graduating with a 3.7 GPA. I come from a
family full of hard workers. And then there is me... the one who
cannot do much in terms of tedious jobs because my accommodations are
nearly impossible to be met. At current, sitting for too long causes
me a great deal of pain as does standing for even short periods of
time. I am often great at hiding my discomfort when in public venues
or amongst other people, as I do not want to be known as that person
who is constantly complaining...sometimes, though, that works against
me as people then do not believe me when I tell them I am in such a
great deal of pain most of the time. I guess I am a rather good
actress when need be! ; ) The only people that can really see through
my facade are my parents; they can tell by the look in my eyes
whether or not I am experiencing discomfort, no matter how much in
which I try to hide it. They are also two of the only people I feel
comfortable expressing my pain to; and I know they would never have
the audacity to judge me.
Still, not being able to work impacts
me in a couple of different ways. My current income is one in which I
am very grateful to have...prior to it I was living on practically
nothing as far as extra money is concerned... Of course my parents
provided me with a place to live, and other essentials (I realize how
spoiled I am to have even had that, and it is something in which I
took for granted in the past). But, with my mom constantly being out
of work due to my hospitalizations (in which she did not get paid for
in terms of time off) she lost a great deal of money and my dad was
merely trying to keep us all afloat. I was not born into a situation
where my parents could afford to constantly give me money to go to
the movies constantly, or I could go to the nearby mall and just blow
a little extra cash. Sure, I was spoiled in a multitude of ways, that
much I will not deny, but I quickly learned how costly this world
could truly be! With the social security income I have now, I am able
to stay afloat and have somewhat of a social life in terms of going
out places and what not. However, attending a school that is $40,000
grand a year without room and board is at times a burden. I worked
very hard to get into this particular school, and have grown to love
it there. In terms of commuting, it is a mere 15 minutes away from my
home. I do not regret my decision to get an education there despite
the cost, but I do at times feel stressed about the financial aspect
of my education. I will need to put aside 500 dollars for books for
this upcoming fall semester, and that in itself will limit what I can
do greatly this summer.
Not to mention the psychological aspect
of not being able to work; throughout high-school, I balanced working
with academics and being in and out of the hospital constantly
(despite my chronic pain at the time). What has changed since then
that has not allowed me to work? Well, the state of my left buttock
is one thing. The other night I was at an award ceremony for my
sister and sitting was tremendously painful, even though it was only
for an hour. Even after, I was so incredibly sore! The chronic pain
in my lower left leg has also increased throughout the past few
years, along with the intensity of my infections. I also grapple with
depression and OCD, although I try to conceal the extent of my
struggles with those to my friends as well. I am not ashamed, but I
do not know how to explain it to them in a way in which they will
understand. Anyway, emotionally, I often feel useless being unable to
work. After all, I come from a long line of hard workers on both
sides of the family... The guilt that accompanies not being able to
provide for myself in the way in which I wish I could often eats at
me psychologically; as I said prior, I often feel useless that I
cannot contribute more financially.
I am currently investigating ways in
which I can make money from the comfort of my home. Someone on
Facebook mentioned Avon to me (being a representative). This is
certainly something I may consider as I love makeup tremendously to
begin with!
Sometimes, everyday feels like a
battle....whether it's physically or emotionally. I think you just
have to push on, though, and do the best you can given your
circumstances. No, I am not Paris Hilton and I will probably never
reach even near that level of wealth. Working to me, however,
represents more than being able to buy fancy things; it represents
morals, it builds character, and helps you to appreciate what you
have more. I cannot wait for my chance to come again, whether that is
now or in the future... Some of my happiest (albeit most painful
days, standing on my Klippel leg for 6 hours at a time!) was when I
worked at a supermarket. Disability has been a great start, and I am
so grateful for without it I would be undoubtedly struggling to get
by. However, I do not wish to live this way forever if I have a say
in it... being completely reliant on the government to get by
financially makes me rather uncomfortable. However, I understand that
there are people out there who have no other choice, heck I have been
and am one of them at current! For those people, I feel great empathy
as I bet they too wish they had the opportunity to earn a living for
themselves... sitting at home in pain and constant boredom is not all
it's cracked up to be, you know. ( ;
- Arianna
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