I am so accustomed to writing about my
difficulties on here that I quite often forget to post something
uplifting – which, from my own personal standpoint, can be somewhat
easier said than done when in the midst of internal frustration; at times, these internal frustrations seem as wide and unwavering as
the ocean itself...
I am not merely a young woman who
everlastingly wanders around aimlessly engulfed in a dark, enigmatic,
down-trodden haze- that is not the kind of person in which I envision myself as. For the past 10 years or so, I consciously concealed the vast majority of my
emotions – deeming them to be innocuous in nature, and that (in
vain) led to an overflowing affectionate burden these past few years.
I was, in retrospect, a balloon simply
waiting to burst... it was not hard for my tight-circle to envision a
mental decline at the time due to years of harsh experiences battling
Klippel in addition to having an overly-sensitive nature in terms of
acquiring “perfection.” From my acquired knowledge in the
psychological field, my deep-rooted psychological issues stem from a
cocktail of environmental circumstances and genes. As a dear and
undeniably competent Psych. Professional once told me, “not
everyone who has chronic illness has a mental illness, too.” These are words in which I would like patients and parents alike to keep in mind. I happen to
have Klippel-Trenaunay Syndrome and Borderline Personality Disorder
(the latter falls under mental illness for those who may not be
aware). While dealing with the emotional residue of my life thus far
these past several years, I have experienced some of my worst demons
in terms of Klippel and its vile symptoms. Life is not particularly
easy, but on a grand-scheme world perspective, it is not all too bad,
either. I am sitting here, in the comfort of my bed, wearing cozy
slippers and eating freshly-picked Raspberries while the sun hides
beneath the evening sky, preparing itself for yet another heat-ladden summer day. Gazing around my room, I see a momentous amount of
pictures – ones that remind me of how blessed I am in terms of the
delightfully radiant, colourful people I have met along my journeys
and the places I have been fortunate enough to visit by some minute
granule of fortune.
That is not to deny or downplay my
problems, as that is in no way my intention. Many who have kept up
with me in personal life, on here, or through some other
social-networking platform know I have been rather vocal about my
plight with Klippel. Whether it's been combating Septicemia,
Cellulitis, Thrombophlebitis, a mere superficial clot, relentless
chronic pain, countless surgeries, it feels as though I have circled
the Klippel drain a multitude of times. The sentence above, however,
merely details the physically apparent burdens of my life thus far. I
have also flirted with deep periods of depression, OCD, and suicidal
thoughts (behavior too, as noted in my posts prior). And, at this
very moment, I am experiencing a bit of a lousy (and rather painful)
bout with my Klippel that will undoubtedly lead to more surgery this
upcoming Fall season.
Yet, with the great assistance of those
around me (rather that be professionals, family, or friends), I
continue to prevail in life – in the sense that I am still living
it! Not only that, though, I live it to various emotional extents –
sometimes, perhaps when I am least expecting it, I feel as though I
am somewhat naturally high on life (admittedly those moments do not
come nearly as often as I would like). Perhaps my fondest memory
since my last hospitalization (I was released at the end of June from
Children's Hospital Boston after approximately 27 days inpatient) is
that of watching the Sunset while driving my Dad's 1980 gold-vintage
Trans Am at a rapid pace (music and speakers in tow) while grazing
the landscape of the tedious 93 highway... I love that little things
like those can still ignite a light so rampant within me – and at
those moments, I feel as though I am on top of the world, truly... It
is as though I can see my problems and hindrances for what they are
in the grand-scheme of my life, and in that time period I find my own
volition to not only keep living this life – wherever it may take me - bad or good, but to honor it.
Below are pictures from July and this
month. You would be rather surprised how emotionally vulnerable I
feel in a multitude of these pictures, despite my put-together
outward appearance. In someways, it's a facade that I must maintain
(while amongst strangers) in order to delve back into society until I
am fully comfortable around others once again... My mom is rather
good at inspiring me to get out and about despite pain and mental
agony. It is my job, however, to determine my overall symptoms on
that given day and examine whether it is in my overall best interest
to go out or not.
This was supposedly to strictly be a
picture post – with perhaps a couple of fully-constructed sentences
as narration. Clearly it did not turn out that way! I am writing this
in the middle of the night, so hopefully this piece of “writing”
is coherent in some way or another... = X Anyhow, though, I hope you
all have a lovely day and would like to thank you sincerely for
reading what I have to write... I read each and every comment posted
here and many of them have touched me profoundly... In terms of
social media, I am a dedicated Facebook user and can be found under
the username of Arianna Helena.
Until next time,
Arianna
Hi Arianna, your blog is really incredible! My son, Kenny, who is 17, also suffers from KTS in his left leg. This past year has been the most challenging for him. I have been writing back and forth with other fb KTS members, and we have been brainstorming about how we can raise funds, and bring awareness to KTS. So far, the best challenge we have seen, was an idea to wear mismatched crazy socks for a day or week, take video and tagging 5 friends to do the same ( like the ice bucket) all while posting link to donate to and help bring more awareness to this syndrome. I know just trying to get something like this going will be a challenge in itself, but with today's social media, I pray we could gain momentum! My heart is deeply invested in this, being a Mom and seeing how it effects my son. I just thought I would reach out to you and see what you thought!!! You are an inspiration to so many! Keep up the good work!
ReplyDeleteSincerely, Colleen Hoffman
Colleenh33@comcast.net