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 2020

December 25th, 2020 - Looking back, at the end of each day

 


I’m thinking of loss. Something we tend to shy away from, but that needs to be acknowledged. I’m also thinking that optimism, and hope are often conscious choices we have to make. It’s easy to feel hopeful and optimistic when life is going well, not so much when life is full of struggle.

 

I find myself thinking of the profound loss I ended up having as a result of getting sick 9 years ago. I think about all the collective loss we’ve had as a nation in 2020. The president has, for the most part, ignored the 300,000+ deaths. People fighting for their lives in hospitals, even as I write this. I think about my mom dying in October of this year – not of COVID, but prevented from seeing her in her last days (spent in a hospital for 2 weeks) because of COVID.

 

I think about the uncertainty that lies ahead – immediately in terms of what the president will do, in his last few weeks – and also in the months to come. I DO feel true hope, knowing that President-Elect Biden and Vice President-Elect Harris will be sworn in.  

 

I don’t know what my normal will be in 2021, but I suspect it will evolve. I will give myself time and space to continue to grieve for my mom, and get used to her absence. I will continue to – because I MUST – find my way, even as I will always have reminders of the losses my invisible disorders caused. Loss is hard. It is draining, and can be all encompassing. But in all the times I’ve let myself grieve, I remind myself, I’ve ALWAYS gotten through to the other side of the moment. Hurting is hard, but it’s also how we know happiness, and love.

 

Each day there is a choice. A choice to try to find goodness in life, or to focus on that which is not. To meet responsibilities, and to find joy. Contentment. It’s difficult, but it’s also very necessary. I keep moving because my mom would want me to. I keep moving because in the end, I want to feel good about what I have to look back on, even as simply as at the end of each day.

My mom and I shared a love of flowers.




 

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September 9, 2020 Nine years out...

 


Nine years ago this month, I got sick. I don't like to talk in any great detail about the night I got sick, because my PTSD can still manifest itself. I wake up in a state of high anxiety. The good news is that nights are better now, which is also because of the help of medication.

 

Doing vision therapy and Feldenkrais both helped me tremendously. I am currently not doing either one due to the pandemic. I no longer have the diagnosis of convergence insufficiency, but I definitely still have a vision disorder. I believe Dr. Margolis, the developmental optometrist I've worked with, calls it visual motor sensitivity. Two limitations I like to tell people because they are so easy to relate to, are that I like to tell people because they're so easy to relate to, I don't drive, and my reading is still limited.

 


I follow a migraine diet very strictly, because I have a lot of migraine food triggers. Following my diet allows me to avoid a great deal of brain fog. I still have to pace myself, which is frustrating, but my body tells me quite clearly when I am overdoing it. I remind myself that I want to try to avoid a full-blown setback. Setbacks are not fun.

 

I do my best to take care of myself, and manage our household. I'm grateful that I can take care of myself, and with help from my husband, and our daughters who are still living at home, that managing our household is possible. I remind myself that there are so many aspects of self-care and household management that have not always been within my reach.

 

I try really hard not to focus on all of the losses I have had. I have done grieving, but there comes a point when tears of sadness, frustration and anger are no longer helpful. This is not to say that I shut down, but even with losses, life does go on. I am well aware that my life could be significantly worse. Particularly in this era of Covid 19, I remind myself that I still have much to be grateful for.

 


I don't know what my future holds, if I will go back to doing any therapy, beyond the once a month touch base sessions I have with my cognitive behavioral therapist. There is just so much uncertainty. So I'm doing the best I can to keep going, do what I can, one day at a time. Sometimes in order to focus myself, I think about what I want, even just a month from now, to look back on. And yes, take it one day at a time. Do the best I can, notice anything positive, especially when it's hard. Because that's when it matters most.

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August 31, 2020 - difficulties, and gratitude

 


I asked these two questions of my parents today, by e-mail. So now I'm asking myself, and maybe anyone reading this can ask themselves.

1) what's difficult for me right now?


2) what's good? what do I have to be grateful for?



It's very strange not to go places, but I don't know how vulnerable I am to COVID 19. I don't think a doctor could tell me. Having less "conventional" comorbidities means that I err on the side of caution. That just seems smart.

 

But it means my world is relatively small. I take the approach of "patient heal thyself" because I don't do Feldenkrais or vision therapy anymore. I check in with my cognitive behavioral therapist, Christina, about once a month. But it's definitely challenging. There are so many things that are different now. It's difficult that I have no confidence in the Trump administration.

 

My mother is right - I do need to acknowledge what's really hard right now. And I try to give myself self-compassion about dealing with what's hard.

 

Now for the other answer -

2) I'm incredibly grateful that we do not face financial hardship - this is huge! I feel so bad for everyone who does.

 


I'm grateful we can put food on the table, and have a safe, good house where we live.

I'm grateful my family is getting along.

I'm grateful for our two cats and dog.


I'm grateful I can see my parents now, for a socially distant, but still present visit.

 

I'm grateful for the friends & family I talk to by phone. Phone calls - hearing voices, sharing laughter is just SO helpful.

 

I'm grateful for all the music online - YouTube is my friend!

 

I'm grateful I can take walks with my husband, and dog.

 

I'm grateful for all the lovely flowers I've seen, and that sharing pictures with family and friends lifts their spirits, as well as mine. Colors of nature are truly awesome!

 

I'm grateful I play my flute a bit each day. I sometimes play our piano keyboard.

 

I'm grateful for all the audio books, and for Google Translates audio feature - SO grateful!

 

I'm grateful for my congregation, and all the effort being made to help us feel together, connected.

 


I'm grateful for what does work the way it's supposed to in my body - I am not solely my disorders!

 


I am trying to choose optimism and hope, over pessimism. I'm trying to keep on putting one foot after the other. There are many people who have lived through - have survived - incredibly difficult times, prior to right now, and even found ways to thrive. So why not now, as well?

 

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August 10, 2020 - Healing can happen - I have to believe this, especially in dark times

 

The number of cases (5 million) & deaths (160,000) of COVID in the US is horrible, and hard to wrap my head around. It's more than 50 9/11's. Yes, I DO blame Trump for his response - it's heartbreaking and infuriating! That Americans aren't welcome elsewhere in the world is a disgrace. I thought we'd be in a different, better place by the end of the summer.


The elderly, those with compromised immune systems or other health issues, black & brown people - are all at higher risk and the Republicans have shown they simply DON'T care, and this is also a disgrace.


That wearing masks and social distancing is so politicized is beyond my comprehension. Doing these two things does NOT take away freedoms - it GIVES you freedom to have some semblance of returning to normal. Otherwise, we wait for safe, effectively distributed vaccines. I say vaccines because there may be more than one, depending on where you live.


Anyone planning to vote for Trump should be ashamed of themselves. Those of us who are voting for Biden need to say so, loud and clear! He's absolutely correct that it didn't have to get this bad.

I'm trying to hold on to the hope that like a phoenix rising out of the ashes, the US will vote Biden into the White House - and down ballot blue - and the US will heal. It will take time, but I have to believe healing can happen.


I chose the first picture above because for me, music - see the notes floating around her - is essential now. And nature. 

 

 

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



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

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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May 30th, 2020 - I'm lucky, & look for the good





I consider myself lucky. When COVID-19 surfaced, I was not in search of diagnoses - I've got them. Nor was I in search of treatment - in fact I'd been doing all my treatments for years.

I am now in "patient heal thyself" mode re my Feldenkrais therapy.  I may need a zoom session at some point, and maybe at some point I will feel safe enough to do a session in person. But not now.


I also discovered that now that I'm no longer doing Feldenkrais or vision therapy, though I still think about my health situation, I think about it less. I try to keep busy. I want to get what I can out of life, rather than focusing on therapy.

I'm comfortable making my own, thought through, rational decisions about how much I do now, versus in months to come. Short term cost for long term gain is OK with me. At the age of 59, I'm not done with this thing called life. For myself, for my family, and whatever the future holds.


It's hard these days to feel optimistic, but past generations have endured so much, I have to believe we can see our way through this pandemic. So I try to focus on the present, one day at a time.


Find good moments to treasure.  String them together in my mind, and try to make them stick. Memory is a complicated, ephemeral thing, but I'll still look for the good where I can.

The selfie was taken on my birthday. The flowers are all from our walks with our dog.

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April 18, 2020 - doing my best to cope - my how to





My coping strategy these days -
1) breathe - feel the air fill my lungs

2) try to stay busy... keep moving, keep going

3) make music... if you can't make music, do something else creative

4) listen to music - uplifting - nothing that brings me down

5) notice every little thing that's good - flowers blooming, snuggling a pet (they're adorable and thankfully totally unaware of the pandemic)



6) stay connected - reach out to people

7) take in the news, and then move on - leave the weighty decisions to those either with the knowledge and expertise, or talking to those with knowledge and expertise to do the best they can to figure things out.

8) be patient - this pandemic is NOT going to go away overnight

9) try my best to be flexible, to problem solve when necessary with my immediate family, be creative

10) take walks with my family and our dog - getting outside, even if the weather's not wonderful feels good.


11) one day at a time - thinking too much ahead of that, for me, is just crazy making.

12) take a minute to let go of tension - consciously let my muscles let go, relax just for a little while.



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March 22, 2020 - much bigger than me - COVID-19



I appreciate people with various health problems feeling this is an opportunity to educate the public, or are perhaps even feeling frustrated and angry that COVID-19 is being taken SO seriously. 

So I wanted to share why I think COVID-19 is different from chronic conditions, and cancer, and why scientifically it's SO different - and more dangerous - than a cold or the flu - 

1) chronic means ongoing, which means it's not fatal. Chronic conditions can definitely cause a great deal of suffering, but they won't kill you. Hopefully, you'll have ways - treatment, etc. - to manage.

2) neither chronic conditions nor cancer are contagious.

COVID-19 can be fatal, and is contagious - it's what's known as a "slippery virus" - it mutates -

Here's an explanation - not written by me - of how it's different from a cold or the flu - 

"It has to do with RNA sequencing.... I.e. genetics.
Seasonal flu is an “all human virus”. The DNA/RNA chains that make up the virus are recognized by the human immune system. This means that your body has some immunity to it before it comes around each year... you get immunity two ways...through exposure to a virus, or by getting a flu shot.

Novel viruses, come from animals.... the WHO tracks novel viruses in animals, (sometimes for years watching for mutations). Usually these viruses only transfer from animal to animal (pigs in the case of H1N1) (birds in the case of the Spanish flu). But once, one of these animal viruses mutates, and starts to transfer from animals to humans... then it’s a problem, Why? Because we have no natural or acquired immunity.. the RNA sequencing of the genes inside the virus isn’t human, and the human immune system doesn’t recognize it so, we can’t fight it off.

Now.... sometimes, the mutation only allows transfer from animal to human, for years it’s only transmission is from an infected animal to a human before it finally mutates so that it can now transfer human to human... once that happens..we have a new contagion phase. And depending on the fashion of this new mutation, thats what decides how contagious, or how deadly it’s gonna be..

H1N1 was deadly....but it did not mutate in a way that was as deadly as the Spanish flu. It’s RNA was slower to mutate and it attacked its host differently, too.

Fast forward.
Now, here comes this Coronavirus... it existed in animals only, for nobody knows how long...but one day, at an animal market, in Wuhan China, in December 2019, it mutated and made the jump from animal to people. At first, only animals could give it to a person... But here is the scary part.... in just TWO WEEKS it mutated again and gained the ability to jump from human to human. Scientists call this quick ability, “slippery”

This Coronavirus, not being in any form a “human” virus (whereas we would all have some natural or acquired immunity). Took off like a rocket. And this was because, Humans have no known immunity...doctors have no known medicines for it.

And it just so happens that this particular mutated animal virus, changed itself in such a way the way that it causes great damage to human lungs..

That’s why Coronavirus is different from seasonal flu, or H1N1 or any other type of influenza.... this one is slippery AF. And it’s a lung eater...And, it’s already mutated AGAIN, so that we now have two strains to deal with, strain s, and strain L....which makes it twice as hard to develop a vaccine.

We really have no tools in our shed, with this. History has shown that fast and immediate closings of public places has helped in the past pandemics. Philadelphia and Baltimore were reluctant to close events in 1918 and they were the hardest hit in the US during the Spanish Flu."



My final thoughts - 
The death toll in Italy, as of this writing, is 4,825 in just a matter of days - not weeks, days. So yes, take it seriously. VERY seriously. My heart goes out to all those it has sickened, the families who have lost loved ones. We must do our absolute best to try to STOP this horrific virus.

This article from the NYTimes is well worth your time - 
https://www.nytimes.com/2020/03/21/world/europe/italy-coronavirus-center-lessons.html?referringSource=articleShare   

Excellent piece by, and vetted by, epidemiologists - the importance of social distancing - 
https://elemental.medium.com/hold-the-line-17231c48ff17

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March 14, 2020 - The Atlas of Happiness, and COVID-19



My husband Ron, who will be 65 in July, and I (59 in May) have never experienced anything like this COVID-19, and how it's impacting the world. First of all, please make sure you get your info from reliable sources! And wash your hands!


Ironically - or not - I just finished listening to The Atlas of Happiness: global secrets on how to be happy, by journalist Helen Russell. The narrator, Peter Holdway, was wonderful. She writes, from A to Z, about the culture, some history, and happiness of 33 different countries. All in bite size essays.



I think it's very good timing because everything shutting down is, to borrow my daughter Leena's term - soul crushing.

Anyway, here's my take-away during these challenging times:

1) Use your phone, and talk to friends and family - no not texting, conversations! There's nothing that replaces the sound of another human voice, and even laughing together. Humans are social animals, and we have to still find ways to connect.

2) Get outside - take a walk if you can, and really take in the trees, grass, sky and sun. If you can't take a walk, at least take a chair out and enjoy being out of your house. Spring is coming, and things will grow even during these COVID-19 times.

3) Do something you enjoy - preferably with your hands. Crafting (this is apparently big in the good old USA), drawing, paying attention to your pets. Pay attention to ANYTHING that's positive. Watch a good movie, find a good book.


And I'm reminding myself, that eventually, this too shall pass. In the meantime, I'll hug my husband, and snuggle my pets.  I don't know what's coming next, but I'm determined to still find pieces of life to enjoy.

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March 4, 2020 - This is what I know




I've had stretches - particularly in the beginning - when I was very much struggling... now I try for management, knowing I will have some bad days, but hoping for mostly good, or at least decent days.

I know the sun will rise - and here's a lovely shot of a sunrise.

My blog is called Visible Person, Invisible Problem, but I actually have four disorders - I like the word "disorders" because it implies a lack of order, a lack of synchronicity - vertiginous migraine or migraine associated vertigo if you prefer, a vision disorder, irritable bowel syndrome and PTSD... they're all tied together.

PTSD which results in anxiety is real, but the other three diagnoses are not all because of anxiety.

I'm trying to choose to focus on the positive - definitely not always easy - but I'm trying. Problem solving when I can, and recognizing and trying to accept what I can't control.

Molly loves to be brushed with this - rubbery bristles on the other side -

Trying to be in the moment - because I know that's really all I can know for sure, or truly possess.

Flowers! 


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February 15, 2020 - "Change the channel" & more



What's "changing the channel"? The idea is simply re-focusing. It's a simple idea that's taken quite a while for me to really "get".


It's about doing something - as simple is getting up if you're lying down, looking out the window, getting a drink of water, thinking about your breathing, or yes doing a different activity - different. It's getting your brain on a different track, into a different groove.
It's about recognizing that thinking about thing "x" AGAIN really isn't going to be helpful.

I'm working on this.


Anxiety demands perfection - if something's perfect, you won't feel anxious right? But the trouble is that perfect is very, very seldom possible - personally, I don't think it ever is. So you end up stuck. So I'm trying to ditch the whole "perfect" business.


Lastly, when I find myself feeling like "wow, is this really my life now?" I'm trying to catch myself and say "you know what, you didn't ask for this right? you didn't ask to get sick, and have all this crap to deal with, but it happened, and you're doing the best you can, right? yeah, you're doing the best you can.
Give yourself the same compassion you give others!"



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