It's been a long 2 years 7 months and 17 days since Tracy, my husband of 38 years, left the planet.
I have given myself what feels like multiple lifetimes since then to heal, grow, recover and change.
What I can tell ya is
ALS STILL SUCKS.
For those who were hoping (myself included) I could leave "that life" behind and start anew, I am so truly sorry to say, that is not happening.
I am happy for all who have been and are able to manage that monumental feat.
The idea that my "bad attitude" about the roller coaster of our journey might some how soften as I move past the daily grind of caregiving (which I would go back to in a split second if it meant my pain in the ass husband would be planet bound again) in fact seems to have taken, what to me seems like a predictable turn in the opposite direction, as I have never been wishy nor washy when it comes to attitudes or decisions.
As I regain what little strength I have (which quite frankly is disappointingly little) I am immediately drawn to those who helped Tracy and me throughout our entire ordeal and continue to do so in so many surprising ways.
Just so you know, I appreciate all of your creative kindnesses every single day still. Every family member, friend and stranger who took the time to hit the like button on a post, send stamps, paper goods, bad jokes- all of it, helped so much.
Never, ever hesitate to do what most consider those "little things" because it's those hundreds of moments that made/make such a difference in our quality of life in meaningful tangible ways.
At the forefront of that list are the (once upon a time) strangers that have dedicated themselves to helping the hopeless over come the tsunami of depressing, irritating misinformation that was heaped upon us from the second of our diagnosis. Yes, those amazing, tenacious, generous souls at HealingALS.com.
What makes them so special? How are they any different from the hundreds of other ALS organizations?
Because they have given their own private time and money to help us and asked for NOTHING in return.
I found them as I searched the world for those who had accomplished what I had hoped to. They talked me thru horrific situations, educated me, mailed us packages of supplies out of their OWN POCKETS. They even came to our home to SHOW us they were REAL. Real, Live People who care about us because they WERE US, Are US.
They were diagnosed with ALS, JUST LIKE US. They were told the Exact same things, I mean word for word, about how hopeless their situation was and how they should give up and get their affairs in order because they were doing to DIE in short order and there wasn't ANYTHING anyone could do about it and anyone who said different were charlatans out to scam you out of your money.
And yet- here they stood, in front of us, on the phone with us, writing letters, mailing supplements and equipment, emailing, sharing, praying- whatever it took to snap us out of the brainwashing we had endured.
Since Tracy's passing I have revisited much of our journey to see the REAL truth from a different perspective. Was I in denial? Was I just in shock? Was it wishful thinking to believe there MUST be a way around this terrible fate?
The answer is yes, yes and yes! Yes- I absolutely deny that the situation is hopeless!! Yes, I am STILL in shock that the world has not discovered the TRUTH. And YES, I believe that it's that exact wishful thinking that is going to keep us marching forward to share the truth that ALS symptoms CAN be slowed, stopped and even reversed because I am TALKING to the people who are doing it right now!!!
So, what this means is I am absolutely dedicated to helping those who have survived ALS get the word out to as many people as I possibly can, as fast as I possibly can, because every day counts.
So please, please help me. Help us.
Help spread the word about HealingALS.com.
The life you save may some day be your own.
Go to HealingALS.com- like, share, post, donate.
