The more things change the more they stay the same

It's 1 am.
I went to sleep several hours ago.
I drifted awake with the longing of wishing Tracy was still here and the memories of why he is not.
I want to tell him every comment, every silliness, every idea, every emotion that has played through me over the last few fun filled days.
So much excitement and friendship.
It's strange to realize that all the distractions, the getting on with life, that I thought was supposed to help me move-........................... forward? in and with life, instead of just wallow in the sadness of what I have lost, what the world has lost, only shines a brighter light on what I miss.
The idea that somehow being able to physically get yourself to DO something in someway proves that you are going to be okay in functioning in life as a whole person seems outrageously ludicrous at this moment.
Is this why most people sit on a stump, crying in their soup after such a loss as I have had?  Because the sadness aligned next to the grief seems more comfortable because of the lack of distance between the two? 
Is it the CONTRAST of emotions that shines a brighter light making the pain MORE obvious than less when you allow yourself to enjoy the love and life around you?
It seems it's true. The more things change the more they stay the same.
The more happiness I make time for the more I long for what I have lost because I want to share my happiness with Tracy.
There is a sudden panic for me, in me, that This IS my life now and may be forever.
All the assurances, that in a year, that magic mile marker that seems to come from everyone's lips, that somehow Time will be on my side and I will feel differently than I do right now,  That I will feel Better, Or I will feel less, seem as likely as winning that billion dollar lottery I bought a ticket for and didn't bother to check to see if I won.
I rarely live in fear because I see no purpose in it, but at this moment the idea that is dawning on me is the honest possible reality that this could be it.  That how I feel is how I will always feel.
 I still enjoy the memory of the birthday card I got from my Aunt Jane 52 years ago.  The fun silly beautiful colorful elephant card with big plastic gemstones on it still makes me feel happy.  The wonderful plastic little kitty toy I got out of the gumball machine 50 years ago still engages my imagination and emotions.  I still laugh and snort at 6:37.
I can't REMEMBER what I did last week because that is THINKING.
But I the FEELINGS are fresh as yesterday for things I have experienced a lifetime ago or 3 months ago.
What if this IS IT?  What if this longing is permanent?
I compare the loss of my mother to this loss of my life.  The loss of my husband, lover, friend, job, neighborhood, house, belongings, energy, my identity.  I thought perhaps learning to live without my mother but still missing her would have taught me how to process this~ but no.
I can see now why people choose to be sad for a while and not let happiness into their lives after a loss like mine.  I am not capable of that but I now understand it better.  Happiness does not distract from the sadness.  They are two totally different things. They coexist. 
It's not that I am happy OR sad.  I am happy AND sad.
As a hypnotist I know logically you can not feel both at the same exact time they say.  But the speed and intensity of the constant exchange between the two creates a new vibration in me.
I can say quite honestly I don't like it much at this moment and yet I can't wish it away.  I have no interest in NOT feeling so I don't feel bad because then the good would have to go with it.
I would never want to lose the good of what I have had. I don't want to not think of Tracy because there is sad mixed in with the wonderful.   I am so lucky that I have had it so good and was so loved by such an interesting, brilliant, crazy, irritating, creative wild man.
I keep pouring out onto this blog everything I can because it is how Tracy processed so successfully.  I keep hoping that somehow, someway it is helping me or someone else.
It's embarrassing and uncomfortable for me to do so and yet I am compelled to do it.  If Tracy had the strength and courage to do it I feel obligated to continue something that was so important to him.
I was hoping that talking out loud on this pretend paper would somehow clarify an idea or emotion that would help me feel that I will feel better some how some way some day.

But for now it seems to me the more things change, the more they stay the same.

Time flies

I had a very interesting question asked of me today.

I think it's something many people wonder about.

 

I was asked if the last 4+ years seemed like they took forever.

I can understand why people might think that.

The truth is that although I was desperately in need of sleep and we met new challenges every day and I missed my friends, family and business, I can honestly say I never felt like my days were long or I wished the battle was over. 

Actually it is quite the opposite.

I still wish that I could have found a way to have Tracy here with me now- even with the work and worry, still worth every second I spent with him.  I was occasionally forced away from him for my own good and his and it was tough on both of us to be apart.  We always said we got along better when we were together more.  

Be Careful what you wish for folks!!!

There was so much more I wanted to do with him.  I still enjoyed HIM.  He kept his sick sense of humor and justified his obscene macabre comments by pretending to whine that it was the ALS causing him to do so.  There was never enough time in the day for all that I NEEDED to get done and then wanted to get done. This didn't leave as much time to just BE with Tracy as I wanted.

Many people express their sympathy for all that I/we must have gone thru having to take care of ALL of his needs as if I went above and beyond.  

I WANTED him here.  He stayed because I asked him to stay so how can I complain?  The scrubbing, feeding, cooking, fixing, massaging were all just ways for me to get to BE with him.  I think many people miss the fact that while I was washing, feeding, moving him I was touching, soothing, loving him too.  

To have a conversation in the last year got to be more of a charades game than an exchange of ideas sometimes but it was worth it.  Just to sit on his lap and do laps around the lake was such a fun wonderful way to share a day and I miss that so much.  Going to the movies was kind of a way to level the playing field because he could do that as well as anyone.  Laughing with the grand boys was a joy for us and later we would exchange what were our favorite moments.  Watching him watch Tesla videos, political debates,  martial arts, boxing and TERRIBLE tv shows was good entertainment for me.  Cringing as I read his latest blog post and doing damage control for his Facebook pot stirring is even missed now.

The number of people who sent encouraging or inspiring cards, letters, emails or came up to us in a crowd to tell Tracy how he had changed their lives and helped them and inspired them in so many ways made it worth every bit of the work to keep him here.

Do mothers get awards for dressing or feeding their kids or giving them a bath?  They do it day in and out.  No one asks if they want to give their kids away or end their lives early because they are so much work and worry.

Occasionally people will insinuate that there must be some sense of relief  now that Tracy is gone, no longer suffering and I am free to be myself without the stress and worry.  So far I have felt absolutely NONE of that relief.  I wonder if there will ever be that day.  I don't think so.

I DO feel less exhausted but not actually rested yet.  I do love getting to see good friends, express myself artistically, play with the grands, help our kids, but I would go back to taking care of his every need without hesitation to have him here with me.

Was I grouchy and daffy and unreasonable?  You bet.  Did I bitch at him about things that were not his fault out of frustration and sleep deprivation?  I'm sorry to say yes.  It's not like I was Pollyanna morning, noon and night (my family can attest to that).

Every day is a day.  Good or bad, hard or fun.  Make the best you can of what you are given.

Live while you have the chance in whatever form that takes because Time Flies whether you are having fun or not.  Might as well at least Try to have fun.

I am sorry/not sorry

http://healingals.org/

Well a huge question has been answered for me today.

My friend Tish who created HealingALS.org sent me a couple videos that I didn't really have time to watch but I could resist and then I was completely sucked in.

They are actually about healing Cancer.

https://www.youtube.com/watch?v=pryU2pKmJh4

https://www.youtube.com/watch?v=3zMLJ_jc9sw

Why am I all lit on fire about them and what question did they answer for me?

The question is - will I ever get my drive, determination and fire back.

The answer is definitely YES!

 

Since Tracy left the planet I just haven't taken the time or had the energy to research and study and be obsessive about anything like when he was here.  I literally studied every single night for more than 4 years to find people who have healed ALS in themselves or others and how they did it.  I had cross referenced those findings with spontaneous healings of other diseases with those of ALS.  I learned about nutrition, detoxing, Ozone Therapy, Hypnosis, psychotherapy, energy work, religious miracles.....on and on.  I was possessed to do so.

In these past months, post Tracy, I have focused on trying to heal myself physically, mentally and emotionally, as the life style of a caregiver probably ranks close to those who work on a bomb squad for Stressful jobs. 

I am happy and I do laugh but that something missing feeling is always there.  There is nothing that feels THAT important now.  Problems are just inconvenient- not the END of the World now that I have experienced the end of my world.

I want to finish the book I am reading but I wouldn't bet on it.  I want to do well in my job but I'm no longer willing to sacrifice family time.  I want to paint and get orders but I don't seem to get the gumption to really get on it.  I am doing my best to do my best but....huh...that glorious gut driven passion has been missing- until now.

I have been basically forcing myself to share personal emotional information because I think Tracy would appreciate it and that I KNOW he has helped so many with his honesty and openness.  After what we have been through and how much so many have done to help us I am absolutely committed to doing anything I can to pass that along to those just entering this abyss of insanity called ALS diagnosis or any other chronic disease.

What I am going to admit here is that I have been holding back.  I have been sharing the things that I felt TRACY would have shared.  They are not the things I want to share.  

But why? 

Why haven't I shared those things?

Because the truth is -

NO ONE WANTS TO HEAR THE TRUTH.

Wait, wait...now...wait....

Before you get all indignant and offended HEAR  me out.

What I WILL  be writing about is gonna put me back into that familiar unpopular place I have been since I decided that a lot of the doctors were full of crap and said so- which was the day we were diagnosed and they offered ME drugs after they offered Tracy drugs as a solution.  Not all doctors.  But a LOT of them are cowards and their egos get in the way of common sense.

It's upsetting to my kids and my extended family and my friends and doctors to hear my "opinions" of how poorly things are handled on so many levels in the roller coaster of the medical nightmare we are pitched into with no warning.  It's upsetting to them because they believe I am upsetting myself for NO GOOD REASON.  "It's not going to bring him back you know"- I hear their minds and hearts scream at me while they smile and nod sympathetically as I rant yet again about the injustice of it all. "Put it out of your mind so you can heal yourself".  "It's YOUR time now".  "It's over".  "You lost".  "There is nothing more you could have done".  

The truth is it's NOT done.  It will NEVER be DONE.  It IS a fact of life.  Death is a fact of Life.  Ignoring it doesn't make it less true.  It makes some people more comfortable- until they are Forced to deal with it.

It- being our experiences- are real, not imagined.  Choosing to NOT THINK about them isn't dealing with them. It's avoiding them.  It's denying them.  These are the same unhealthy attitudes that create emotional and neurological issues that turn into chronic diseases that no one seems to know how to deal with.   

I have recently made an effort to keep my big yap shut ( a HUGE drain on my energy) about those things that make people cringe or sigh or cry because I like people to be happy.

Well, I am people too and I don't feel I will really heal unless I at least make an effort to express the truth of what I have learned on our ALS journey.  

You can like it or not.  You can ignore it.  You can pretend I am in denial, uneducated, over emotional, venting, in shock or any other dismissive title to explain away the truth of what I AM going to share with you over the next coming weeks.

What has fanned the fire in me to create such an explosive reaction?

These videos I have posted here with 

Dr. William (Bill) Bengston.

It's not his repeated studies that PROVE scientifically he has healed cancers in mice and expects to in people.

It's the comments he makes throughout his video that highly educated people in the medical and research fields absolutely refuse to have anything to do with him after they find out- he is right. 

I have experienced the exact same frustrating thing.

THIS is why I am all lit on fire.

 

He mentions that when you change the foundation of ones beliefs they have no way to COMFORTABLY process this new information.  They resent him.  They are afraid of him.  They are confused by him.  They don't know what to do or how to act if they except his findings that they now KNOW are TRUE.

They ALL AVOID the truth because THEY would have to change THEIR lives.

So sorry folks, I am about to change your lives because you can't UNKNOW something.

Understand now that if you choose to read these upcoming posts it is with the responsibility of KNOWING things that can and will some day change the world.  Are you going to be part of that process or part of slowing down that process because no matter what, it IS going to happen?  

To choose to do nothing is still making a choice.

I am now forcing you to make a choice.

You have no choice about it now:)

 

Yes.  I have just done the unthinkable to you all.  

I have FORCED you, those I love and care about, those who have sacrificed so much for Tracy and I, 

I have now Forced you to let go of your 

Bliss of Ignorance

 to slide down into the deep dark trenches of the truth, 

as unpopular as that may be.

I am sorry/not sorry.

Doing Too Well

Life has swept me off my feet and back into the raging rivers of activity.

With many offers to come hide away, to starting businesses on my own and with others, travel, health reform, authoring books, magazines, articles, art, children's activities... my mind and heart are overflowing with the endless possibilities and appreciation.  It's all exciting and invigorating and humbling. 

I think it's important to share that there is not enough activity in the universe to completely distract me from the realities of change forced upon me.  

Each and every action is still preceded or followed by or interrupted by the thought  "Tracy would have".  Whether I see his shirts or fix a meal or consider an action or make a bed HE is there.  

I left OUR environment to be peaceful and unreminded of all that I have lost and what must change but no matter where I go- there WE are.   I almost said today that I will be glad when I just have a thought about me ( but I couldn't even finish thinking it much less say it). I do look forward to No preamble or post amble.  Just -here is where I am going.  Here is what I am doing.  But this is all NEW territory.  There is nothing I am going back to.  I have never been just ME.  I went from my parents house to OUR house.  From the moment we met in high school it was US.  I was either going to be with him or not with him but HIM was always there in every consideration.  It's like losing a limb.  I had learned to function as two.  It's not like I sit around bemoaning the facts of what I have lost constantly but now I have to learn how to be and who to be as only a half of me.  It is such a strange feeling.

I've had those who have lost ask me how I am doing so well.  What am I doing to get through this devastation and still be able to function.  There are those who are afraid I am doing TOO well, perhaps worried I am still in denial, in shock.

All I can say is - here is where I am.  This is the day I have.  If it doesn't make me or someone else happier or healthier- why do it?  When I am sad I am sad but I feel no obligation to STAY there.  If I am painting and feel like crying I do.   When my grands are hilarious I laugh and I wish Tracy was here to laugh with me.  When our kids are amazing I am so proud and I know Tracy is so proud too.  

Living with ALS instead of Dying of it like we were told to do over and over taught us both- don't waste a single second of life.  Every moment is important and a gift.  If you wait until you have everything the way you want it to be happy you will waste your life.  The way to find happiness is to CHOOSE to BE happy.

Am I pissed I didn't get my way and heal Tracy completely immediately- you bet I am.  Am I going to continue to work to change how ALS is diagnosed and dealt with. Absolutely.  But making myself miserable as if suffering will help me heal makes no sense to me.  I am learning to be me, something I never wanted to do.  My only choice is to do the best I can with what I have.  I don't understand how to be any other way.  Maybe I will feel totally different a month from now or a year from now.

Only time will tell if I am doing Too Well.

Me being Me

I have run away from home to Fredericksburg, TX to find time for myself to rest (which my soul, mind and body needed and still needs so badly).  I wish I could be here another week at least, maybe a month or more.  This surprises me!!! 
But it's not this nice little tourist town that is the draw.  

The past Amy would have been chomping at the bit to get started on a hundred new projects.  She would have been concerned about money already spent and how to afford staying and how to make money in the future.  She would have actually crocheted several projects since she brought the yarn and hooks and even bought new ones.  She would have read some of the books she brought- ok- she would have started each of the books she brought.  
But I have not found my spark yet.

No worries- I have a plan B and C set up immediately upon return to the real world in hopes of lighting a full fire under myself.

Because I am today planning on going home tomorrow I spent last night asking the Universe for a sign.  A direction.  What my nature WANTS to do and what others are telling me to do for my own good because they love and/or care about me in some way, aren't exactly the same thing.  Okay- aren't anywhere near the same thing.  But- if I naturally WANTED to do these things others wouldn't have to save me from myself then right?  People keep saying to me- you can't expect to FEEL BETTER yet.  It takes time.  This means that I am following what I am told instead of what FEELS right.  
(Hello?  Does anybody out there know me?)  
I have found this exhausting! 

Until now.

I got a lightning bolt sign from the Universe that I will discuss in a future post some day, maybe, possibly, perhaps.

Let me just say that the issues 
(Yes, full blown issues) 
I have, why I have them and the way I want to work through them make others very very uncomfortable.  And for good reason.  And those people aren't even the people I am having the issues WITH.  
(Those people still don't realize there IS an issue {which is part of the issue}- but they WILL).

Tempering my reactions I am told is good for ME when in reality I am beginning to now believe it's actually good for those I love and care about even more.   
This is very important to me.  
I can't be truly happy if others around me are not happy and most especially if I am the CAUSE of their pain or discomfort.  

But at what point do I start doing the things I believe will help ME (and the world perhaps)?  Some tell me with assurance- never.  Let it go.  It's over.  What is the point in rehashing? You are just upsetting yourself. Now is not the time.  Let yourself heal.

Everyone's loss is horrible.  It's not a competition. Everyone handles it in their own way.  

I appreciate everyone's love and support and friendship so much. It helped Tracy and I be together as longs as we were and is helping me so much now. I AM listening.  I AM.

I recognize that I may be making decisions from a perspective of loss and anger instead of light and love.  But is it also possible that I AM making decisions from a perspective of LOSS AND LOVE?

My soul has a festering under the splinter of this loss of the love of my life.  Digging it out is no fun for anyone.  Not me or the ones around me.  To put a Bandaid over it doesn't heal it tho.  It protects the wound until the time is right to dig it out so true healing can begin.  
I understand this time is necessary and good.  
But at some point you have to dig in.   If not, the dirt and grime and germs that are causing the possible infection will continue to irritate the body until an even bigger more painful problem causes someone to take action.  But don't wait too long.  That is how scars are formed.  How many parents have held down a screaming child to take care of a small splinter just so they don't have to deal with this bigger issue later?

Many have pointed out I'm not like most people.  I don't see things or feel things the same way others do. I did not know that about myself until a hypnosis class 20 years ago.  Working with Religious and spiritual people and energy healers recently, who didn't know each other or me, have repeated this to me enough times that I now believe it. 
I'm not like most people.
Luckily I don't see or feel this as good or bad.
It just is.  
I feel no compulsion to be like or unlike others.  I am just me and even if I tried to not be me I would just be a different version of me so it seems like an energy sapping waste of time when there are a lot more fun things I'd rather be doing.  
Again- the practical part of me speaks.

I am completely oblivious to so many extremely obvious and important  events  and issues others are upset about and I am completely emotionally engulfed by seemingly small simple things that may have happened 45 years ago but feel the same way to me today.  People openly laugh at me about the way I am and so do I.  
What is really funny to me is the irony that the advice given to me is advice for the common world, the same people telling me I am different.  
People keep trying to save me from myself because THEY would NEVER want what I want or need.  

I have tried these last few months to apply all that I have been told,  to take my time, to think about me, to relax, to process my grief in the many healthy ways the world has written and told me about.

I have done my best to really accept the information and advice that has been so lovingly shared.

I have considered that I am in Denial or/and shock.  Am I avoiding realities or emotions?  
What would that look like or feel like? 

These ideas and questions have a lot to do with WHY I decided to take this sabbatical.

What this weekend has proven to me is that I am a practical person.

 I am completely okay being on my own.  I, just like Tracy, wish my friends and family could be with me for so many of the fun wonderful things I did and saw this week.  
I, UNLIKE TRACY, was completely comfortable with no TV or radio, sitting alone in the quiet, futzing around, not really doing much of anything or going out hiking by myself or chatting with shop owners.  I am completely comfortable with the heat turned up to 80 with the paddle fan blowing a tropical breeze:)  I am completely fine driving around with no idea where I am going, having fun just waiting to bump into something or not.  I was surprised to find out that I don't seem to get LOST.  I am not saying I have any kind of sense of direction (which Tracy always amazed me with).  But I was able to get here and around and was not lost in the abyss as my life experience had lead me to believe would happen if I didn't have a team of navigators shouting directions.  Yes, I HAVE been lost WITH the use of a GPS many times, within my own community and I am sure I will be again.  But it's an adventure until you STRESS about it.  That usually includes a timeline and since I didn't have one- no problem.

I believe I will manage my life alone okay- with the help of others.  (I love irony).   I am not afraid to be alone.  I am so so sad, so sad, to not have Tracy with me. That joy of just having him here leaves such a big hole.   
I have not found any relief at all in the fact he is not here.  
No AT LEASTs. 

He wanted to go, He's not suffering- true but to be Tracy Honest- that doesn't make ME feel better.  I am glad HE feels better.  I still wish he was here.

 I get to sleep now. ok...I get to eat when I want. ...meh...I can shop- big deal....

I would much rather be wiping his hind end and teasing him about his hippie hair.  I would rather be dragging him to a terrible movie where people's heads blow up and going to look at the Red Tesla AGAIN than planning my future without him.  Often people would sympathize with me about all I didn't get to do because of his condition but it was ME who wanted him here.  It was MY choice, not his, to have him stick around.  

True love isn't just being willing to die for another. The sacrifices our military, police, fire, emergency etc. are acts of true love without even knowing the people they are helping.  Amazing.  
But an even bigger sacrifice is to LIVE with the kind of suffering Tracy did because I wanted him here.  Selfish of me?  Absolutely.  
While you all have been polishing my halo at what I "had" to endure, Tracy on a daily basis, continued to show me how much he loved me by staying.  He stayed so his grandchildren would know him.  He stayed to make sure our kids would be okay.  He stayed because he was the most loving heroic crazy funny irritating idiotic human on the planet. He never believed he could heal.  I absolutely KNOW he could and some day I will prove it.  
He stayed anyway because I wanted him to.  
THAT is true love.

I miss doing something great or stupid and knowing there is someone to look at or call to make THAT connection, that only 41 years can bring.  All I can do now is know he would know or laugh or groan or gripe.  But that is life.  There are a lot of things I'd like to have or be or do that probably won't happen- like being younger, getting to know my Dad's mother or invent the spinny disk (cause it already exists).  My life doesn't stop because I can't get my way.

But what about the things I CAN do something about?

I believe THIS is where MY healing will actually start.

I believe the Universe just gave me a sign to

TRUST MYSELF. 

That seems like good advice to me.  

I could hear me saying that to others with confidence. 

I am hoping Tracy is here pushing me along, to go ahead and follow my heart - EVEN if it makes others uncomfortable (which he was so good at and enjoyed doing)  because quite honestly to create change most times people NEED to be uncomfortable to get up off their duffs to make it happen.

So this is your warning world:  

I am about to become ME again and in a whole new way and the only person on the planet who could have stopped me left Oct 27th- 3:54 pm.

Hold on- this is gonna be a bumpy ride.