Memories
are your personal experiences & reflections of your past interactions
through this “journey” we navigate,
better known as - - Life. Your memories
are stored away, some, are long lost & forgotten. They’re locked deep, deep
within the crevasses & compartments of our minds – like you can’t remember
them, that is until someone inserts the key & ‘reminds’ you of the past
event. Which, prompts you into opening up the “passageway to the past.” Other
memories, are readily available, and embedded right in the frontal lobe. I can clearly recall my very first memory in
life. I was in the crib, yes, the crib. I remember my mother’s bed was located
in the far right corner of her bedroom, my crib was located to the left side of
the room; which was in direct eyeshot of my mother’s bed. I clearly remember the style of her long
sleeved ankle length, ivory housecoat with huge pastel colored flowers
perfectly placed all over. I glanced
upwards and noticed she was exiting the bedroom; I recall wondering, “Where is she going?” I’ve always been
inquisitive… I was wearing a
short-sleeved chambray blue t-shirt with navy blue piping around my neck and
arms, along with a diaper. I was sitting upright, just chilling, and minding my
own business. My gaze went from looking
at my mom sauntering out of the bedroom, to looking down at my plush animal
friends. Just as I glanced downward, I heard a very loud, deep, booming voice
scream “BOO!!!” I then saw my father’s long, voluminous “billy goat” inspired beard
& accompanying mustached face (it was 1980 – we can’t fault the man for
this faux pas) hovering over my crib. This crazy man was looking down at me grinning
wide like a Cheshire Cat. I recall his
gold chain with the circular charm dangling swinging back and forth over my
crib like a pendulum. I jumped up, startled & scared for my life! It was
straight out of a bond movie, my little body was “shaken, not stirred.” After the reality of what just occurred and
after a few sets of rapid eye blinks; I broke out into tears, wailing loudly
for my mother’s return. I needed her to save me from my crazy ass Daddy! I
remember thinking, “Why in the hell would
you do that Daddy? “ Yes, that was my EXACT
thought! It’s a memory - - not a story that was passed down from my parents to
me. I remember the very first time I spoke of my earliest memory to my parents,
they were shocked – when I accurately described the layout of the room; along
with my father admitting his role in the above ‘incident.’ I should
make note: Till this very day, I am easily startled & extremely
jumpy! I KNOW, he was the catalyst for this life-long condition of everlasting ‘Scaredycatdom!” (Yep, I’m at it again,
with another new phrase!) However, I cannot solely blame my father for my
rickety nerves; I mean, I did grow up in Castle Hill Houses (Projects); and gunshots
were often heard; and thankfully I always dodged…
Some
memories haunt my heart. They’re memories of a time where life was a little bit
easier, and I could literally BREATHE… Obviously, I’m still breathing, like how in the hell else did
I write, this post?!? LMAO (If you’re a new
reader, then you should be advised; I MUST inject humor into my posts, it’s a
lifestyle, I promise, you’ll love me for it!). Now back to what I was
saying…I remember how much easier life was when I wasn’t concerned with
breathing with the assistance of supplemental oxygen; without cannula tubing;
without coughing so hard that I think I’ll ultimately break my ribs. Ruminating about a time long ago, when I
wasn’t so fearful of eating; or even a time where I naturally felt & could
easily identify - - hunger. When you have Scleroderma & Pulmonary Fibrosis,
there are a lot of issues you may deal with when it comes to GERD, esophageal
issues, allergies, as well as, congestion problems ( just to name a few – the lists
of symptoms & associated conditions/ailments is too long to cover here). Personally, I have all of the aforementioned conditions,
but I’ll focus on my enlarged esophagus.
Having an enlarged esophagus is hazardous! My food easily travels back upward, instead of
digesting properly, like a normal, healthy working esophagus/gut. I am in jeopardy of my food aspirating into
my lungs and choking me to death. As a precaution, I must not eat late in the
evening; it’s advised, that sit upright for 3 hours & sleep at a 45 degree
angle. Furthermore, I also need to avoid
certain foods & drinks that can exacerbate chaos and inflict havoc. Hell, I’m longing for the times where I was
actually able to sleep, a full, deep rested, uninterrupted slumber. One where
my dreams weren’t nightmares, full of anxiety about waging a war to remain
alive. When I have a memory of my former, healthy
life, I realize how dangerous some those memories are. I’m left longing for something I’ll never be
able to regain in this life – apparatus
free living. The fibrosis in my
lungs severely restricts my breathing. I affectionately
refer to them as my “lousy lungs,” which only function at 35%. I cough throughout the day & night,
anything can set it off, from laughter, to dust, perfumes or colognes, and if I
(over)eat – well, then I get sick, because I have no gag reflex, to hold things
securely inside. I feel full most days
(which is actually very common in Pulmonary Fibrosis patients). The supplemental oxygen level I’m on is 2.5
liters & sometimes, I have to go up to 3 liters to breathe easier. The only
option to ‘save my life’ is to receive a double lung transplant. Life is ironic, the one thing that can save
my life, is also the thing I CANNOT receive.
So this is the place, where I’d usually insert something funny; but no,
this is actually pretty sad. I’ve made peace with this. My expiration date cannot be determined by
doctors. Only HE knows when I will be done with my journey in the physical
world. Statistically, there may be a
greater chance of getting hit by a bus, or some other horrific accident that
would take me out of this world more quickly than my diseases. I may live to be
a wrinkle-free Centenarian. (My Scleroderma Warriors will relate to this
quip, LOL.)
In
order to cope, with this beautifully imperfect life of mine, I choose to focus
on actually living within; as well as, participating in fostering &
sustaining healthy, loving relationships with my close family & dear friends.
I’m focused on creating & nurturing
heart-to-heart connections with beautiful souls by sharing, learning, exchanging,
educating, advocating and collaborating on ways to bring about awareness &
funding to Scleroderma, Pulmonary Fibrosis and Polymyositis Organizations. In
addition, it’s imperative for me to work on promoting positivity, empowerment
and uplifting one another to live up to our greatness, “Stand in Our Truths” & take ownership & be cognizant of how
we move within The Universe. Basically, I’m
too damn busy being an active participant and writing my NEW narrative; not the
one prescribed to me by any textbook/physician/medical test. I’m more focused
on reminiscing about all the good times; it brings a smile to my face, joy to
my heart, and usually laughter in copious amounts; because of my “theatrical
orating” in only the way, I can deliver doses of hilarity. And last but definitely not least, if it
weren’t for my beloved & cathartic writing… I truly would be, “Alone In a Room,” “All By Myself,” “Alone,
Alone, Alone.” <- Trivia Category: “Origin of Phrases for 500...” & the Answer is: “What are song lyrics Alex?!” LMAO, CTFU…
I truly crack myself up!
Thank
you for reading, until next time…
Sending
you all love, light & positivity,
Kimberly***
