Minding my own business

 I keep trying my best to not get OVERLY involved in this healing stuff.

I resist the best I can to stay off my tufted, striped, tasseled, glittered soap box about our journey through the ALS nightmare.

But then just when I think I have a chance of making it back to some sort of a balanced normal life something like THIS shows up and I am thrown back into the whirlwind of memories and emotions.

I hope you watch this video.

https://www.youtube.com/watch?v=CaD-oF9deNY

This is video is Good news.  

GREAT news actually.

Dr. Bedlack is a doctor who has been researching outside the box to find ways to heal ALS.

He is a well respected doctor inside and outside the standard medical community.

He speaks of new developments in gene recognition associated to ALS.

He mentions being aware of at least 24 documented cases of ALS reversals,

at least several of which are people I have become acquainted with and who helped us heal many problems in many ways.

He mentions Lunasin by Reliv which we have in our home at this very moment that Tracy did take.

He talks about the fact that those with ALS don't really die of ALS. 

They die of complications due to immobility.  

He talks about being on a vent as an option that most ALSers don't take because of their perception of lack of quality of life but they COULD increase their life expectancy if they chose that path.

He gives credit to the Ice Bucket Challenge for providing financial resources that have allowed some ground breaking new discoveries that may allow a CURE for ALS.

Here is a REAL medical doctor validating all the things that I discovered on my own so why am I upset?

I am upset because we lost our battle with ALS.  

But did we have to?

We lost it because doctors told Tracy and I repeatedly from the moment of diagnosis- 

Do NOT TRY to heal. 

They shamed me through our whole journey and told me "I was cruel to for dragging him thru this".  

They told me that I  was "in Denial" and "Obsessing" more than a few times when I tried to ask questions about health and negative side effects of drugs they forced on him.

The flatly refused to even discuss the health ideas those who HAVE reversed their ALS symptoms used.

When we DID heal symptoms they told us were impossible to heal, they completely ignored our success.

They refused to "do anything extreme" to relieve Tracy's congestion due to pneumonia because they told us "there was no hope of him having any quality of life and he wasn't going to get any better".

And again- I was being cruel to continue to ignore the truth of the situation.

The truth is - Tracy had no interest in living as a quadriplegic.  He was done fighting every single minute of every day believing he had NO chance at a real life.

Would it have been a different story had they, at diagnosis, kept their lecturing and close minded opinions to themselves?

What would have happened if they had acted surprised and pleased when we stopped spasms,  returned his blood pressure and heart rate to normal, returned to Pre Diabetic health by diet change and stopping meds?

What would have happened if they had actually looked up any of the people I told them I was talking to that had healed their ALS?

And on and on and on.....

But Tracy is gone so what difference does it make now.

It matters because I wasn't wrong. 

I wasn't crazy.

I wasn't just ignoring the hard reality of the diagnosis.

I am not just an overwrought, emotional widow, bitter because I didn't get the fairy tale ending I wanted.

We were lied to and mislead over and over again.

Tracy suffered absolutely unnecessarily on many occasions.

He was given meds that were harmful after we repeatedly told them they were causing problems.

We were given very harmful medical advice that was just ridiculously wrong.

Over and over again we had to take our health out of the hands of the doctors due to the harm they caused and covertly use natural methods to heal the damage they caused.

But...he is gone so what is the point?

The point is every single day new families are devastated by the diagnosis of ALS.

They are told in horrific torturous ways a doctor's reality of the situation that is created by their choices on many levels.  They are asked repeatedly to sign a DNR from the minute they are diagnosed.

They are told "there is NO evidence" that anything can help.

They ARE NOT told that the drugs that are shoveled at them CAUSE many many problems that we are all told are symptoms of ALS.  

How do I ignore these facts when we experienced them ourselves?

Knowing how much it helped us to have the HealingALS.org people CARE about our struggles allowed us to LIVE each day instead of DYING each day as we were instructed to do.

Why can a doctor say- here is a group of people who have REVERSED their symptoms by means that have NOTHING TO DO with the money from the Ice Bucket Challenge and NO ONE will donate a nickle to the people WHO HAVE ALREADY ACCOMPLISHED HEALING ALS?

Was I cruel to drag out Tracy's life so he could know his grand children and for them to know him? 

Was I selfish for wanting him with me even if he was in a rolling chair?

Maybe.

But what if..... What if we had known at diagnosis all I know now?

How can I NOT want to share that with those entering this nightmare?

I might need to get a bigger soap box.

 

Becky and Kelly Cutler

Tracy just made a great new friend.

Becky Cutler.

I am so sad to say Becky left the planet this morning.

https://www.youtube.com/watch?v=ak57oWbd82Y

 

I've only known the Cutlers a short time

 but they make quite an impression.  

I met Kelly, Becky's husband, #1 fan and very devoted caregiver at the All Good Cafe where he was gigging.

Their names kept being brought up to me by other musicians I would talk to at the open jam Tracy liked to go to.

Turns out that Becky had ALS and I thought maybe I could help them with something, anything, I had learned from my journey with Tracy. Then I found out once I was there that the mother of the waitress there died of ALS a few years back.  

How strange is that?

Well as it turns out they were wonderful folks and accepted me into their inner circle and made me feel like family right away.  I feel so very lucky to have them have befriended me.

To lose yet another wonderful person in my life to ALS just lights that fire under me to change things and help and educate people EVEN MORE.  

I have had many many many people all agree with each other and say to me, repeatedly, passionately, lovingly- I don't think it's a good idea for you to put yourself thru "this" so soon after Tracy's ...er..uh..mmm...leaving.  

I thought- Wow- EVERYONE is saying the same thing.  They MUST be right.  You can't get 3 people to agree on ANYTHING, so to have all sorts of people from psychics, to family, to well informed authors and professionals agreeing it's a BAD idea to get involved with the Trauma of  others ALS journey right now while I am still in shock and reeling with the many unwanted life changes forced upon me, I should really LISTEN TO THEM.

I want you all to know- I DID listen, 

I am STILL LISTENING.  

I have really tried to wait, to rest, to heal, to observe, to keep my distance, to remain reserved, to focus on ME, to give myself time.

The problem for me is that I am not the rest of the world.  

I used to think I was middle of the road and average in my views.  

This journey thru ALS has proven that clearly,

 I was mistaken.

As I sit in sadness at the loss of yet another wonderful, creative, delightful, talented person at the hands of ALS I am so disappointed that I wasn't able to do more to stop this outcome.  But at the same time I am so glad I had a chance to meet Becky and Kelly.  I feel so lucky to have been invited into their lives at this point in their journey and I wish I would have met them years ago.   

There are some things that only those in the "trenches" can understand or even laugh at. They both made me feel comfortable just being me from the first minute.

They are entertaining and honest and have amazingly generous and extremely diverse friends they shared with me from day one.

I am finding the whole widow thing very taxing because as I venture out to make new friends or go to festivals or events on my own, of course the discussion of - what brought you to Dallas? comes up.  

Talk about a conversation stopper.  

I tried a couple times to avoid the whole subject without flat out lying but then they ask why the hell I can't find my way more than 2 blocks from home if I've lived here 4 years. What do I do for a living? Why am I living with my kids?

 I tried explaining I am directionally challenged but polite people making polite conversation ask questions and I am just not smart enough to come up with half truths quick enough to make any sense.

Being with the Cutlers there is none of that.  

We just got to be US.  No tippy toeing around subjects.  The extreme personal realities of care giving or being cared for allows a bluntness out of necessity.

(But I have to admit that our sense of humor tends to lay in the same gutter so quite possibly that care giver thing might just be an excuse.)

It must be how really brilliant people feel about the rest of the world. 

 "They just couldn't understand". 

 There is a special bonding being with people who REALLY know without having to ask.  

(Not that I mind anyone asking anything now.  If I can help anyone at all with anything to make their lives easier I am all about it).

So now that THIS day has come to have to deal with and I ponder who was right,  Because they all warned me- there isn't a second's hesitation.  I have absolutely NO regrets about spending time with Becky and Kelly and I am damn glad I did.

I am not sad for Becky any more.

I was before, for all that she lost and suffered through.  Now my heart goes out to Kelly, understanding his loss.

I'm sad for me and the good times I won't get to share with Becky.

I was often accused of being in denial by doctors.

I am often worried about as being in denial to this day about things still by many who care about me.

Even beautiful sweet Becky was worried about ME and how I would deal with her leaving just days ago because I continued to bring or do anything I might think helpful as if she would live to be 100.

(This kindness and attitude is typical of those with ALS and is why doctors call it "The Nice Guys Disease").

NOT FACING the reality of ALS - not giving ALS faces- real live people- doesn't make it go away for me.  It's not out of sight out of mind for me.  

That is denial to me.

Knowing each day that people are being diagnosed and are told there is ONLY one path and it goes like this - KNOWING that doesn't HAVE to be the ONLY truth, is as agonizing to me as losing someone face to face.  

It's the SAME to me because we lived that reality.

Every person suffering from the ALS life feels just like Tracy and I to me.

Taking time to "pretend" it's not happening does NOT do anything to help me heal.  

It makes it WORSE for me. 

I know.  I did try it.

 

I do understand how others can NOT understand that.

I do understand how others don't feel that way.

I am sorry that my choices worry and stress my loving family who are still trying to heal themselves.

But how can you put yourself thru this again?- people say to me or think loud enough for me to feel or hear.  

Because at least I TRIED.  

I let Becky know that she wasn't an ALS patient to me.  She was a wonderful beautiful person who happened to get the worst disease on the planet.  She got to share stories with me about her music and family and life and friends because I spoke ALS, (it's got it's own accent that you have to get used to) when others couldn't understand her.  

Maybe I gave her a pillow to make her arm feel more comfortable.  Maybe I only bugged the shinola out of Kelly and Becky but at least they were aware that I cared enough to make an effort.

I KNOW how much I STILL appreciate every single act of generosity and kindness that were shown to Tracy and I.  When you can't leave the house and you spend weeks not talking to anyone but doctors who use you as lab rats, every card, email, dirty joke, phone message, simple gift, kind word and dollar means so much and always will.  

ALWAYS.

To think that I might be able to relieve even one day of that gut wrenching agony of panic and despair at the hopelessness shoveled upon those diagnosed with ALS is worth whatever I have to deal with on the backside.  

Side note:

I come home from work today after learning about Becky's passing and there are SEVERAL FB messages to me from ALS pals.

One if from Reliv answering that they are willing to help me help an ALS family.

Then there was a message from THAT family saying thanks for helping them and her husband is showing signs of improvement already and has new movement in his arm.

Then I have another message from another ALS family that made no sense.

I responded to find out she was answering a message I sent in Feb. that 

JUST SHOWED UP TODAY.  

She is now newly encouraged to make renewed efforts in researching healing for her loved one and even joked Tracy must have had something to do with it.

So just when I was feeling really sad that I could not stop what I was told was impossible to stop and I was beginning to doubt myself 

I got 3 messages at the SAME TIME

saying how much I have helped them

just by caring enough to try. 

Don't ever be afraid to love someone because you are afraid you might get hurt.