With the new year I am doing my best to set new goals.
What do I leave behind and what do I nurture and grow?
It's an odd place to be knowing I can't live in the past but not
wanting to forget it either.
I loved my past.
My husband, my art, my crazy new age energy gurus, my fun loving,
rough around the edges, out of the box friends.
Now ALS is part of my past as well....or is it?
When Tracy and I were newly diagnosed we spoke to people who
were in the ALS Association for more than 16 years after the passing of their loved
ones and I thought- how?
How could they remain in the trenches that long?
I remember thinking, if we (because I truly believed we would always be WE)
ever get past all this, there is no way I would continue to stay in the absolute
WORST situation, way beyond what even my wild imagination could conjure up,
we have ever lived through. And yet....here I am.
I have come to find out there is NO leaving.
It's a part of us like shrapnel.
It's gotten to be nearly daily now that someone contacts me to ask a health, medical, mobility,
fund raising, hypnosis, family crisis, supplement, energy work, or personal question related to our journey. This seems most incredible to me since I knew absolutely NOTHING about health or medicine or being an adult or how to use an Iphone or an ATM when we were diagnosed.
I assure them I do NOT have all the answers and many of them I do have, quite possibly could be wrong, but I am willing to share what we did and discovered in hopes they will be a step ahead of where we were. Perhaps that one step could be the one they need to get out of the pit we are all are so casually tossed into at diagnosis.
It seems that no matter what my decisions are about my future, the Universe keeps placing situations and people in front of me that draw me back into that emotional vortex. Those who are living my exact situation that have kept in touch with me over this past year strengthen my confidence that -
no, I did not make all this up. No, I wasn't in denial. I wasn't scammed or naive.
What I learned IS REAL.
It is Fact.
And yes, it goes against the standard information out there that has been and continues to be presented as fact and our only option.
How can I just let all that go knowing others suffer daily for no good reason?
When you are drowning in depression and stress and fear and someone offers you ANY help,
it's like getting that desperately needed gasp of air.
It is pounded into us that a PILL is the ONLY hope and anything but THAT is worthless.
I am here to tell you that is absolutely a lie.
I am here to say, and continue saying, whether anyone is listening or not,
that the caring and sharing of information, right, wrong or unproven IS
healing on so many levels.
I continue to appreciate every comment, greeting card, phone
call, bad joke, text, message, email, gift card, prayer and actual paper note we received and continue to receive.
Never underestimate the healing power of kindness.
And I don't mean in just the Hallmark isn't that nice way.
I mean in a real tangible, being on the planet longer, living a healthier,
happier life kind of way.
Because the medical world won't quantify that in a research study
does not mean it isn't true. It means that there is no money to fund it's research.
I really, really don't want to be one of THOSE people.
"We" know what you think even if you don't say it.
You are afraid if you ask how we are doing we might ramble on and
actually tell you, in great detail. You feel guilty to eat junk food in front of
us for fear of judgement and nutritional lectures.
And for the love of God PLEASE don't get us
started on the food and medical industry and conspiracy!!
I think it's about balance.
Balance between our old life and my new life.
Balance between living and reliving.
The lecture I spit at the youth condescending to me about getting comfortable with Progress, generally referring to spending money on more electronic contraptions that are programmed to be outdated in 2 years, and Change I think is appropriate here as well.
Change: to leave behind (throw out) what you were doing or had in order to do or have something new.
(This is the mantra of our new society).
Progress: To keep the useful techniques and knowledge gained from the past and building on those in order to improve your life with ADDED experience, techniques, items or knowledge.
I choose to not just change my life but to progress thru my life.
Donate now so others can live.
