September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

Archive for March 2019

March 29th, 2019 possibility....

By | Published Friday, March 29, 2019



Change is unpredictable – sometimes happening in the blink of an eye, sometimes over decades... but it's not always bad, sometimes it's possibility.

As my systemic multitasking improves, my ability to function improves... & these possibilities come into my head –

will I ever do local driving again?
Will attending musical theater be a thing for me?
Will I ever be able to do a little bit of travel?  starting with a day trip? travel doesn't have to be something humongous

Will I be able to watch a movie at home with only one break?  Without a break?
Can life actually become more fun for me again?

I think the answer to the last question is probably yes & that's pretty cool.  I don't know the answer to the other questions, because I don't know how much more I'll improve - where all this rehab is taking me.

I DO know that opening up to possibility, to the not knowing of life, to even contemplating those questions above is major for me.

I also know that to create positive change, finding even a very small glimmer of strength, of ability - and building on it – matters.



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March 27th, 2019 Creativity... ability...

By | Published Wednesday, March 27, 2019



I posted a piece on 2-20-19 about self care, & what I've realized is that self care isn't just about things like pacing myself and getting good sleep. 

It's also about doing things for enjoyment – even if it's only for a few minutes, whether it's a creative thing, listening to something, a phone call, etc. The drawing above is about a few minutes of enjoyment.

Christina told me once I could do hard things, & I'm now starting to believe that.  Not all the time, but I'm starting to feel once again that I'm able. Having the various resources I need in order to make progress is important, but ultimately it's still up to me to actually DO. 
  


I don't know what life's going to throw my way - life can be very unpredictable - I'm telling myself more & more lately - "you are doing the best you can". I'm clearly making progress - what I've been doing lately is proof of that. 

These last two pieces are just drawings – I seem to have found a style of my own, though each piece is a little bit different there are definitely similarities… Interesting to see what has emerged.



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March 9th, 2019 6 things to remember

By | Published Saturday, March 9, 2019




looking back at what I've written recently, there are some things that stand out -

1) in order to feel hopeful, you have to have a plan, & having a plan means having not only the perseverance to carry it out, but also the right team of professionals, & the financial resources.  I feel for those were not in this position.

2) I need to be honest with myself, but being realistic doesn't mean that a negative outcome is a given.  Especially if I learn along the way - learning means growth.

3) Gather info, think things thru, & be open to opportunity.  Let myself sit with information when I need to, but try not to get in my own way.
  
4) I am not a static thing - I'm a human being, which means what I can do today may change in the future - one day to the next, one week to the next, etc.- try to do the best you/I can.

5) keep communication open, not just between myself and my professional, but between the professionals themselves. I feel very fortunate to be working with my medical professionals.  It's important that I'm able to ask questions - for those reading this, if someone you're working with isn't open to questions, if at all possible, go elsewhere.

6) don't focus so much on where I'm going, on making progress, to the point that I can't enjoy where I am right now.  

The picture that goes with this post is of Molly - a pet of ours who puts a smile on my face every day.
Photo credit - Leena




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March 2nd, 2019 More progress means hard work

By | Published Saturday, March 2, 2019



I realized I'm minimizing how important it is that my eyes are now converging - my negative thinking still kicks in... it's frustrating that building endurance is a process - not something I think I'd really thought about, and yet it makes sense - learning a new skill is important, but building endurance so I can pull it out of my tool bag whenever I need it is also really important.

Which brings me to anniversaries again - reviewing my situation as May approaches make sense.  But thinking "well, I've been at this for so long, isn't it enough?"  isn't what I should be asking.  I said multiple times that my journey has not been linear - kind of the opposite actually. 
So the questions to ask are-

1) what's happening now?
I'm doing well, making progress - I still hit bumps, not every day is wonderful, but overall, I'm learning, growing, changing.

2) is making more progress a reasonable possibility? Yes

3) do I want to make more progress?  this last Q may seem odd, but in my post 1-6-19 "neurological change, it IS possible" - lists some things required in order for progress to happen.

If I'm being honest with myself, I want more than I have right now - I don't think that's my PTSD anxiety being demanding, I think it's how I feel. I wrote recently about what success looks like for me, & the one piece I still don't have is regular activities "out there," meaning not at home. I don't know what's possible, but I feel like I need to try - that means more rehab, & all that that involves.

I'm incredibly fortunate that all these years in, doing more rehab is still possible for me, due to all the support I get.  I wish everyone had this, but that doesn't mean I should feel guilty that I Do have that opportunity - it DOES mean that I should make the most of it...

Take advantage of doing with my daughters, husband, etc when I can, give myself breaks - everyone needs time off from work, right? - but I need to keep going.  I have to do what works for my neurological self, but I have to do the work. I don't think I'm quite ready to accept that where I'm at is where I have to stay.

Symphony is when sympathetic and parasympathetic are integrated... 75% means not expecting 100% - perfection

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March 1st, 2019 integration... Let it unfold...

By | Published Friday, March 1, 2019



When I did this drawing - thinking of my winding journey, hence the twisting line & the arrows in different directions - it occurred to me how important integration is.

How well, how much integration there is between a variety of systems - visual, vestibular, sympathetic and parasympathetic, auditory, etc. - all these electrical signals (are emotions electrical signals?? what about body chemistry, biology?)... All kinds of different brain activity, neural activity... complicated is an understatement...

I don't know the answer - will integration be completed or will it be ongoing?  In bits and pieces?  I guess it really is an adventure, with good days and bad days and in between days... I know that my journey is not a linear one.... 

I remind myself again, that what I KNOW for SURE is today, right now.  I can't analyze this integration thing too much - I think I need to let it unfold.

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