Friday, April 24, 2015


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,

1 comment:

  1. Bless you for choosing heart to heart connections and sharing your truth! You ROCK!


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