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...

January 4th, 2019 be my own cheerleader

By | Published Friday, January 4, 2019


I've got a big outing challenge tomorrow, so I did this... I realized it's okay - even good - to cheer myself on, as I try to DO, with my invisible disorders :-)



I have to be my own cheerleader - believing in myself is even more important than others believing in me... I've had these cray pas for months, & finally used them... Different feel than pencils, but I like them - you can make a really BOLD statement... so I did :-)


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January 3rd, 2019 My sneaky, stealthy buddy - Anxiety

By | Published Thursday, January 3, 2019


My Anxiety's just as real as my vision & vestibular disorders, & just as invisible.

here's my latest sign -  



I had vision therapy today... Ann & I agreed that while 2017 was a lousy year, 2018 was much better, I'm making progress, integrating all my therapies into my life... afterwards, I thought about how my anxiety works - sometimes I don't FEEL really anxious, but then I realize I'm going inward - the way Anxiety tricks my mind is so tricky - stealthy - I'm still in the process of understanding.

So, going back to my goals of flexibility & stamina - what are some ways to build these, & not feel like I'm letting Anxiety win?

1) I've done 4 days of going out in a row... could I try for 5?

2) could I go out the day after VT? This is a definite anxiety trigger, but I'm tired of making choices based on Anxiety - on what MAY happen

3) could I eventually go out more than once in a day? I actually DO do that - I go someplace, & then walk with Ron. Doing 2 outings plus the walk is BIG - but maybe something to work for.

4) keep on building my activities at home, what I do on a therapy day - remember that everything counts!

My anxiety's trying to get in my way -  thinking about what I can handle. There's a balance between acknowledging my disabilities, & trying my best to live a full life, & my Anxiety tells me to be very, very cautious. But the only way for me to know for SURE is to try - not with a 10 on the Exposure Richter scale, but still try.

The more I realize about how Anxiety works, the better - I can have more awareness... talking with Joyce (Feldenkrais) about goals is valid - reviewing what I'm doing at home, as well as with her, so I can keep moving forward.


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January 2nd, 2019 Being present & planning can co-exist, or "what's in my future?"

By | Published Wednesday, January 2, 2019




I'm sharing this piece because I thought that it might be helpful for others - not just myself - to see my thought process.  That said, neurological rehab is very individual -something I remind myself of frequently.

Part of what makes my life full right now is my therapies, but I've also said that therapy is a means to an end, not an end in itself... therapy shouldn't become something I do because I'm used to it.

As 2019 begins, I'm thinking that being present, & thinking about the future are not mutually exclusive... I can't look into a crystal ball & know for sure how my life will unfold, but that doesn't mean make NO plans at all.

Volunteering - yup, still thinking about that - I used to think that volunteering had to be "out there," but maybe not, right now.  My main goal really is to do something that feels valuable. I don't want to do anything that's on a tight schedule - definitely not ready for that.

I'll remind Cassey at VeDA about sending me new member calls. www.vestibular.org

Maybe I could do something for a local organization - like our local Shelter (Orphans of the Storm - very close to our house. Fleece blankets for cats & dogs? 

Therapy - it feels like talking with Ann & Joyce about parameters of my treatment makes sense. 

Joyce, my OT/Feldenkrais practitioner was the first person who provided the beginning of my road to recovery, & working with her is not only for balance, but also sensory work - she's also trained in the Masgutova method (https://masgutovamethod.com/).  

Vestibular & sensory issues are complex, but it's relevant & valuable for me to think about what & when I transition to in my work with her.  I don't know what kind of support I will need long-term - given my vertiginous migraine disorder - I'll only find out by experimenting.

Ann - vision therapy -  vision is a multilayered, complex system involving so much... but again, what are the parameters of my treatment at this point, and what kind of support will I need long-term?

Working with Christina - cognitive behavioral therapy - will at some point moving to support, but I don't think it's time for a discussion about that yet - I'm still in my first year of treatment.

I'm fully aware that I'm extremely fortunate to be able to think about having long-term support.  I truly wish everyone was in this position, especially because it can take a long time to pull all the pieces of a successful treatment plan together.


 thanks to my friend Marla for the above quote

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