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 June 2020

June 20th, 2020 - One day at a time - living with invisible disorders in the age of COVID-19

By | Published Saturday, June 20, 2020



I don't know what the risk factor is for me for COVID 19, with my invisible disorders - all of which are neurological. Additionally, my husband is in the at risk group. So I'm erring on the side of caution. As an FB friend said, this is NOT a virus I want to get. It's not the flu. And my disorders have not magically vanished.


I had a good phone conversation with my aunt recently - she listened, which is so important! I told her that while I've greatly benefited from my therapies, none of them is a complete cure (currently, I'm only doing monthly check-ins with my cognitive behavioral therapist). My daughter asked me the other day if carrying heavy stuff makes me dizzy, and I said it's more like I have to work harder to keep my balance or equilibrium.

Having people ask questions is a great way to educate others, and helps me understand what I experience because I have to think about it.


VeDA (the vestibular disorders Association – www.vestibular.org) has loads of info about a lot of vestibular disorders. Migraine associated vertigo or vertiginous migraine is a vestibular disorder - it became an official vestibular diagnosis relatively recently. I have other disorders as well, like my vision disorder, which is closely linked to my vestibular disorder. I like to use the word "disorder" because it makes sense to me - something is "out of order."

When I have trouble, I remind myself that I have the info and management tools to take care of myself, AND that I always, eventually, get back to my baseline. I also know that at the age of 59, I want to be around for a long time yet, so short term cost for long term gain is OK with me.  Making decisions won't always be easy, but I'll do the best I can. I'll also continue to try to notice anything positive, pull myself back to the present, and take things one day at a time.


I couldn't stand on one leg like flamingos do, but isn't it amazing that they have this capacity!


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June 10, 2020 - Thoughts on white privilege, and disabilities

By | Published Wednesday, June 10, 2020

I've seen posts saying that thinking about white privilege shouldn't turn into a conversation that's about my feelings as opposed to those of my friends who are people of color. But self examination - thinking about what white privilege means to me - is personal. I also was part of a short online conversation which got me thinking. There are really 3 pieces for me - 1) being Jewish, 2) not believing in God, and 3) having disabilities.
a Humanorah - 



Being Jewish puts me in a small minority - the percentage of the global population that's Jewish is about .2%, and apparently about 1.2% of that population lives in the states. How I feel about being Jewish is layered - there's ancestry (which to me is the story of how my family came to be here, which is complicated), and there's culture. Culture is different because that involves my Humanistic beliefs. For info on what being Humanistic means see this link from our congregation - https://www.kolhadash.com/our-beliefs 

Being a Humanistic Jew is, for me, much more about what I DO believe, as opposed to not believing in God.  It's a young branch of Judaism, however, and I'm well aware that not believing in God puts me in an even smaller minority. Our congregation is wonderful, as is our rabbi, but our congregation is small. When I'm interacting with members, I feel good about my Jewish identity. I wouldn't be part of a congregation if we hadn't found Humanistic Judaism, but it can be difficult to be part of a very small minority. The world often feels like it's completely Christian, and there's a presumption about belief in God. It took me quite a while to be public about being a Humanistic Jew, though it also felt, and feels, much more authentic.

Lastly, there's the disabilities thing. I got sick in Sept. of 2011 - literally overnight - and though I didn't know it then, I became one of millions who have a disability. I don't, other than wearing colored glasses, look disabled. This is good and bad. I don't drive, and except for reading very short (a few sentences) writing, I rely on audio. Thank goodness for the audio feature of Google Translate! It's difficult to have disabilities. I don't complain about it, but I certainly don't like it. I try to make the best of my situation.


People are not completely comfortable with those who are disabled. I've run into much advice giving, trying to fix my problems. I know they are well intended, but it's also about not wanting to acknowledge my reality. There's always - I believe - a discomfort. My disabilities are not contagious, but there's still a feeling, I believe, of "what if this happened to me." This is not entirely unreasonable. I had no warning that I would get sick. When I hear people say "can you imagine if your life changed all of a sudden?" I think "I don't have to imagine that, because for me, it did.".

So in the end, if I'm going to be honest, I'm grateful that I'm white for one simple reason - it makes my life, and identity simpler, easier. I've wondered how I'd feel right now if having disabilities wasn't part of my picture, but ultimately that feels foolish, because I DO have disabilities. Having disabilities is as much a part of who I am as being a Humanistic Jew. Neither is ALL of who I am, but both are important. Acknowledging the fact that being white makes my life easier, and that I'm grateful for that, is human. It doesn't mean I can't empathize for the people of color whom I care about, for whatever struggles or hardships they face because they are people of color.




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