I will start with the closest to my heart: True Love - for 3 years now, we have spent 24 hours 7 days a week TOGETHER!!! Whew.. (this can be freaking hard and absolutely exhausting) we argue - fuss and laugh on a daily, I guess it makes up for the lack of kisses and hugs and our making beautiful, harmonious, in sync, boisterous love sessions " FIRE" whoo-whoo let me stop there before my melancholy follows my nostalgia.
Anywho, NO MARRIAGE, I mean, NO MARRIAGE can survive when two individuals are attached at the hip 24/7 feelings of disenchantment and sarcasm yet, here we are: Best Friends - Adversaries - Confidants - Truth-Tellers - Motivators and I can go on and on.... maybe later -
Then there is Understanding of each other's needs, of our individual reality - agreeing to disagree yet expressing our emotions regardless how raw and sometimes annoying and hurtful. We learn the importance of purging so that we may better understand one another and honor self.
Reality: Our Reality, really the reality of many in our condition/situations is the " As I call it"
Once we were many now, it is just us against the odds. Sad but true, you see when faced with this reality nose to nose the truth of it being a real bitch is super clear! She will make you smile then punch you in the throat, especially when you sit in thought remembering the day we were considered upper middle class and our now new reality... below poverty level shit... we are poor! will I find myself in line for my block of cheese? (c'mon, how many of you miss that cheese??)
then I remind myself... Poverty level is a label I will NOT accept simply because we are Blessed.
Our New Discoveries: Eric had major symptoms before diagnosis, severe muscle spasms, cramps, full body pains, he was missed diagnosed for 2 1/2 years with fibromyalgia - ooops.
Once we persisted for a thorough check up BAM the monster showed his disgusting face - diagnosed 11/08/2011 then Pneumonia/Hospital stay 12/26/11 to 1/5/12 my Eric went from walking alone to a cane to a walker to a scooter and now, to a power chair. then paralyzed.
New Discoveries of Self: You see... because of ALS we have been introduced to ourselves as a whole - the good - nice - pretty - mean - ugly - beautiful, from the core to the eyebrows - a journey of hidden dimensions all leading to our purpose -
sure, since becoming a full time caregiver I have lost myself, I have forced myself to be quiet - I have watched my bright light dim - my spirit which was once a loud rambunctious spit fire, who lived freely become caged. My life as I knew it vanished - in a flash, this all occurred due to the quick change and I did not understand how to handle it all so I succumb to my darkness but, I chose not to continue there so, I flipped that bitch and tightened up my boot straps after I put my big girl panties on then, I ran to my full length mirror and said to myself: Self, you are beautiful and smart and creative and loud and loving and talented and free, always free, so stop with the bullshit and allow Margarita to just be. God has been waiting for me to unwrap my gifts and boy when I tell you my God is Great..... Believe me for somehow in all of this.... I knew He was giving me a glimpse of what my life and it's talents would be about.
Learning to trust the new norm: The blessings we have received since diagnosis have been astounding - The light of good has shined through our darkest hour - we have learned how to search deep within ourselves and become reacquainted , more appreciative with who we are not what our current circumstances has made us. We both learned how to believe in ourselves without the garbage of the everyday hustle - ALS paralyzed our life but not our spirits,
Eric became more outspoken, more passionate about his emotions, about the cause of believing in a mighty God who never forsakes us. He is open and carefree although he continues to live in his habitual manner, routine, routine, routine... (this totally drives me bananas - Grrrrr)
I have been gifted with talents I would have never discovered had I not been exactly where I am at this very moment. let's see, Two and half years ago I began making jewelry, pretty nice too if I might say so myself... then one morning I woke up with the urge to make soap, I ignored the feeling, naturally but then the 3rd day arrives and I feel the desire is much stronger, then it hit me and I looked up and said oh, God, the idea came from you, well, ok I'll do it - and guess what? it has been wonderful. Soaps lead to shower scrubs and lotions and body mists and much more, awesome I tell you. then... God placed a paint brush in my hand and woa, woa, woa an artist was born!!!!
Now do you see? Blessings from all corners.
Eric and I would never have realized all the possibilities, never would have begun to know our purpose.
We have lost many people along the way, those who felt that either they had no time to waste with us and our circumstance or simply forgot about us but, in all of His Glory God has sent Angels - these Angels never cease to amaze Eric and I with their pure friendship - Love - Understanding but most importantly... their respect.
You cannot buy nor beg for this reality, this truth.
Eric was diagnosed on November 8, 2011 and on November 10, 2011 God spoke to me, He promised me that we would be ok financially. God is a man of His word, we have exactly what we need and I have learned that we really do not need that much. All the Glory to God.
ALS is a death sentence if you allow it to be, you see, my husband in all his purity of heart knew 30 minutes after his diagnosis that it was actually an invitation to life, his exact words were:
" I am Blessed to have ALS" my first reaction was to punch him but, I hugged him instead.
Eric may be paralyzed and very limited as to places to visit due to his chronic pain but his spirit is so free, his love so pure and his heart so giving. absolutely no negativity dwells in his thoughts, he has never uttered "why me"? when asked, he answers "Why not me?" I am a soldier of the Lord.
Diagnosed 2 weeks prior to our 1st wedding anniversary we traveled many roads together and apart - grief, sadness, fear, disappointment, ANGER (my part), united, bonded, living in Faith and waiting on a Miracle - Blessed. "for we are to souls borne with the sole intention of uniting in this lifetime."
WE ARE STRONG WARRIORS IN A FIGHT FOR OUR LIVES
ALS can and will rob you of your physical movements yet, it cannot steal your spirit nor suffocate your soul unless you allow it!!!!
4 years into sharing a life with ALS and I can honestly tell you that Eric remains a happy and healthy man simply by believing in his mantra:
NEVER GIVE UP - NEVER GIVE IN
This is shared from two individuals living the same experience on a different level- the power of each story told from separate views - Sprinkled with the Magic of beginning with an "I" and ending with a "WE".
With lots and lots of love from the Chapman's and remember to always.....
FIGHT THE FIGHT
God Bless
Margarita & Eric
