1/1/15-HNY, I'm Still Debra

Dr. Wayne Dyer, FB

Were my doctors right?  Will 2015 be the year that my HS accelerates and I lose my mind?  Maybe.  We’ll see.  And it doesn’t matter.

I wish this post weren’t so long but it has been a while in the making and I have to write when I am mentally able to do so.  Thank you for taking the time to read it.

I am experiencing a decline in my capabilities.  That much is clear. I’m still Debra, and I hope Lisa Genova will forgive me for borrowing a modicum of her title from her NY bestseller, “Still Alice.”  And while I am still Debra, I am not just that.  You and I are more than this physical life.  If you have questions around that, I encourage you to watch this video (here) narrated by Gangaji as she reads an excerpt from her book, “The Diamond In Your Pocket.”

Just a few strokes past midnight on 1/1, barely into 2015, I was given great peace and an epiphany around it all. The great I AM that lives in all of us is eternal.  There is nothing to fear.  There is only great love and joy to give.  With my recent struggles of adapting to life with HS, I had forgotten that.  May we each live every day of 2015 from love.  Love is all there is and within that, all is well, always, no matter what.

But that wasn’t the epiphany, exactly.  I came to realize that there is great freedom and expansion in not only accepting HS but embracing it.  So I began to listen to that still small voice of Spirit, really listen, and I began making adjustments in my life accordingly.  I was surprised to find great expansion within my restricted abilities as I stopped focusing on the limitations and focused instead on solutions and adjustments.  The less I struggle, the faster the solutions for adjustments come and within that life gets easier which allows expansion even though my world is seemingly contracting.

That was the epiphany.

So, bring it on.  Let’s get this party started.  I’m ready.  Are you?

I used to multi-task for long hours over many days.  Now, I can’t even do a two-fer which means I’m down to wearing a onesie.  Ha!  I am losing the ability to do a lot of normal tasks yet my neurons will fire on the strangest pathway allowing me the ability to do something far more difficult than the very simple thing I started out trying to do!  Fascinating.

As I write this I can practically hear my loving, metaphysical friends screaming that I am perfectly healthy and whole and that I should pray, meditate and affirm only the positive.  In the words of our late, great Rev. Dr. Johnnie Coleman, I too affirm, “God Is My Health.”  I also offer that painting a realistic picture of what I am going through, and accepting it as is, is also positive.  And I affirm that I in fact have never been more spiritually aware or synchronous with Allness in my life.  It is what it is, and within that, all is well, always.  God is my health and just as I am, I am a perfect being and a bright light, healthy and whole.

HS is a gift and has become my friend because it requires me to live life simply, stay in the moment, look for the beauty in all things, intensely honor my truth, have boundless gratitude and be fearless with abandon.

And to just be.  It is a balance that is not always easy.  This blog post, making a request for my campaign, and embracing HS are prime examples of areas that trip me up.  But to quote Dr. Susan Jeffries from the title of her book, I “feel the fear and do it anyway.”  HS gives me the courage to get real, now.

I went through a period of abysmal grief.  I was angry, despondent and in agony over the fear of losing my health, shelter, stability, routine/order, and any security around any of one of those.  Letting go of who I thought I was, and who I thought I should be, was excruciatingly painful.  And it was a process.  One that may continue to show up on occasion, but today I am free.  There is great peace in surrender.

Pam Grout’s Book, “E-Squared” was written to prove that our thoughts create our reality.  For a long-time I wailed that I did not create scarring in my brain that was stealing the very life I was trying to create.

Then, slowly over time I came to understand something that, for me, is an answer to prayer:

Most in my circle would agree that in a perfect world we would all strive to serve God, Christ, Creation, Spirit, Peace. Our intent every moment of each day would be to be a conduit for that spiritual energy. Energy flows through us as directed, guided and allowed by us, but I offer that energy also forms its own conduits. Just like a raging river will form a canyon if it needs release, universal spiritual energy will also find a way to get what it needs to serve the greater Good. I believe we co-create and sometimes our job is to meld with that already forming, to be of service in that, and flow with the Allness of greatness - even when we are personally or physically limited. 

Consider Bryce Canyon, for example. The water that formed those magnificent features was constrained to walls, burrowing to find an outlet, and flowing. It would not be contained and along the way was creating works of art, rare beauty. The longer it took to find freedom, the more magnificent the result. In that process, I can only imagine that at times when all of that water reached the other side and found expansion, it must have exploded to fill its new-found clearing. How powerful! How energetic! Likewise, regardless of how we feel, or how reduced our capabilities, through connection with all that ever was and all that will ever be, we can find our way. We can be used even when we are not consciously co-creating. We can always, in spite of our circumstances, be a vessel for Spirit. There is only One. There is no separation.

In my 12/20 post (here), I shared that I was using a private Twitter account based on inspiration from Thomas Dixon’s story as a tool for managing HS. I have decided to also create a public Twitter account that will depict what it’s like living with HS. I am inspired to do so in case it can help anyone else, especially anyone with a TBI. I am making major adjustments, but I’m still Debra, and my life is awe-mazing. I am not limited by HS. I could let it stop me in my tracks but life is unlimited, eternal and full of expanding awareness and possibilities. I want others to know that too. We are not that which is in this physical body. We are infinite, spiritual beings.

My new Twitter account is: #tbirealityck. Please join me there if you are so inclined.

In the meantime, if you want an understanding of what my days are like, you can read the following. As you do, please keep the positive aspects of HS in mind. I’m still Debra. And I’m still a bright light even though….

I Have the Dropsies and I Wear a Onesie

• I drop things, a lot.  My dexterity is altered and my hands shake without warning. You may recall from my 12/20 post the incident that involved exploding eggs. I found a  solution on Pinterest: Store them in a container and just pour them as needed.  How brilliant!  I’m using a container that was coffee creamer.  It means my eggs have to be scrambled (Am I the only one that finds that hilarious?!?), but that’s okay, I’m no longer capable of frying eggs anyway.  It is a solution born in acceptance.
  

• I couldn’t figure out how to turn the light on in my bathroom the other day.  I was about to panic so I took a deep breath and affirmed, All is well, always.  The solution that came to me was to get a flashlight and touch every switch in there to try and recall what each was for (all of the trailer gauges, indicator lights, etc., are in there).  Turns out, my wires were just twisted – the ones in my brain, not the walls.  What I thought was an indicator light was actually the actual light switch.  I just had to back into helping my brain figure it out.

• Some people have asked what it is like to live in such a tiny place.  They can't imagine doing so.  Well, the Spree is a lot larger than Fiona, but for me there is great comfort in living small. Anything larger would be intimidating. On days when I am disoriented, especially days when I can’t readily identify that I am home, I still feel safe being able to literally see all 4 walls.  I loved Fiona.  I could wake up and just by turning my head I could see my entire environment.  I am grateful to be able to continue living small.  Thank you Palace Purchasers.

• It is getting to the point where I not only am having to track my meals to make sure I eat, I am also going to have to simplify what foods I eat.  Everyone, at one time or another, has probably gone to the pantry or the fridge, opened it and stared at its contents wondering what to fix.  The difference for me is I can stare so long that I forget what I’m trying to figure out.  Then I end up not eating at all.  Also, sometimes, by the time I figure it out, and then remember how to prepare it, I’m too mentally exhausted to follow through with the prep and the cooking, let alone the eating and ever-daunting clean up.  Meals are a major issue, but doable.  I simply need to eat the same simple things routinely.  Now that I have accepted my perceived limitation, Voila, problem solved.  Once I gave up trying to force traditional cooking, and sat in stillness asking for a solution that worked for HS, it came to me easily and readily, and Mrs. Palace Purchaser has offered to help me figure out what to do with all of the “complicated” foods I still have in my pantry, freezer and fridge.  I am so blessed, in so many ways.

• Living with HS reminds me a little of being slightly autistic with a mild form of Down ’s syndrome while being fully aware of both.  I can say that with love and respect because I have two friends with beautiful, autistic children, and my own Christopher had Down’s.  Which, in many ways, makes this quite ironic, doesn’t it?  The difference for me is that I used to celebrate for Christopher because he didn’t seem to be aware of his genetic aberration.  He thought he was superman, and of course, to his proud mom, he was.  It was great fun to see him experience life and live in his big, bright, beautiful light.  Every day was a new day for him and I am learning to celebrate the same.  I do things like trying to use the remote control to make a call, but I figure it out fairly quickly, and just like Christopher, I laugh and laugh.

• Everything has to be in its place or it can take literally hours out of my day to find something, or work around it, or find an alternative, plausible solution.  Here is a photo of case in point. 

The cords were out of control for me and for the life of me I could not figure out how to untangle them (or my mind).  So after several attempts I let them be and used them anyway.  I know it looks gnarly but no worries, only one at a time is actually used. I had done several hours worth of work on my laptop (from bed because I was dizzy).  Then, as is it turns out, I had the wrong cord plugged in to the laptop I was using and so consequently it died on me. I was working in a software that I thought automatically did backups, but evidently not. I lost everything and had to start over later that night.  Finding a solution and untangling the cords took the remainder of my day.  Moral of the story?  Even my cords have to remain in order, in their place, and the use of them must be simple.  Thanks to the Palace Purchasers getting a few power strips while they were at Lowe’s, I now have that problem solved.  It took me 2.5 hours to accomplish the following photo.

There are 9 cords.  They are now sorted, wrapped and color coded.  And I still only use one at a time but I needed to have them all in their place, ready to use.  Simple.

• Everything takes me longer, but there is nothing that I can’t do.  Well, I can’t do loud noise, or lots of people for prolonged periods of time, or travel without a lot of rest, or drive on symptomatic days, or…. Well, you get the picture.  But I’m still Debra and I can still write (most days), I can still work (it takes me longer but I can do it and I do not charge my employer for the extra hours), I can still maintain my household (as long as it is small, simplified, organized, and staid), and I can still snuggle with my dogs and enjoy walks with them even if I have to use a walking stick.

In all of this I have accepted that I can only do one thing a day in addition to taking care of the essentials (food, water, shelter).  I can have a visitor, go somewhere, write or work but I can’t do more than one of those things.  And each of them takes all day.  If I’m going to have a visitor or go somewhere, it takes a lot of rest and quiet before and after.  And I’ve realized it takes everything I’ve got to get presentable.

• The other day (I didn’t realize it until later), I went to the Palace Purchaser’s in my pajama top.  Yikes! The last time I went to town, I went with mismatched shoes, no makeup and uncombed hair.  All my energy was concentrated on being able to drive, the tasks I needed to accomplish and remembering the things I needed to take with me.  I was consumed by that.  Appearance didn’t matter.  I get why some with mental disorders look disheveled.  I truly get it.  It takes great effort not to live it.

I don’t drive very often.  When I do, I make sure that it is during the day and that I am completely capable.  For this last trip to town, Mr. Palace Purchaser brought some sort of big machine to use on my battery so my car would start.  I guess it had been too long since it had been driven. So, I added that to my Mr. Piggy checklist (see 12/20 post).  It’s all doable.  It’s all good.

And none of this matters.  Life is beautiful and you took the time to share this with me.  Thank you.  It only took me 5 days to formulate it and 4 hours to write it.  LOL.  But doing it made my heart sing.  I’m still Debra and I am very, very grateful.  I can hardly wait to see the awesomeness 2015 brings.

Happy New Year!