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 August 2019

August 30, 2019 The person I am, & what matters

By | Published Friday, August 30, 2019



I try to distinguish between my PTSD Anxiety, & the symptoms of my migraine associated vertigo and/or convergence insufficiency disorders. These disorders are all internal - I look fairly healthy to the casual observer.

It's not like there's a drawer, or pocket, or something inside of me that's for each of these disorders. But when I do something, I have a pretty good understanding now of what challenges me, so I'm getting better at figuring out what's going on. Fatigue is sometimes the main issue. Even if I don't feel really bad symptoms, the management can be very tiring.

Many people have some basic understanding of anxiety, though PTSD Anxiety, which produces physiological changes in my body, is harder to comprehend.  My other invisible disorders - the vestibular & visual - are even more difficult to understand. When someone simply respects that they don't know what's going on inside my body, yet believes that I have challenges, that's the best understanding to have.

When I think about how I spend my time, I know that I can't know what my future holds, so I have to focus on now. Be present. I can ask myself "what do I want to have to look back on at the end of the week?". Yes, just a week, not a month, certainly not a full year. A week.

We live in a high speed, high tech age when productivity is highly valued. Yet when I think about what matters most, I believe it's still about people feeling connected, valued.

Rather than thinking about productivity, what I've gotten DONE, what else is there?



I want to have learned - life feels kind of tedious without any learning

I want to have laughed

I want to have shared some good conversations

I want to have made music, to have been creative

I want to share some hugs, some smiles

I want to know I was kind, and treated with kindness

I don't want to chase after perfection - that feels like an impossible standard, and exhausting

When I think about my life with my invisible disorders, what I really want at the end of each week, is to feel a sense of worth, value in living. It feels like a shift in thinking, but in its' essence, I want to feel good about who I am, regardless of my invisible disorders.

How I feel about the person I am doesn't have to solely come from productivity.

My sense of myself - invisible disorders included - can come, really, from more than what I got done.  Noticing a beautiful flower, & sharing pictures for others to appreciate. Like the pictures of flowers I posted with this piece. Drinking in how lovely they are.

Enjoying a beautiful weather day. Sunshine. My house, with my three fluffs, also known as Cosmo, Maisy & Molly. Knowing I have friends & family who care - whether they're physically with me or not, & even if my friendship circle is very small. How I treat myself & other people - with kindness, compassion. Trying to keep my sense of humor, letting tears come - & be seen.



It's not like I just discovered kindness, compassion and human responsibility, but I have more clarity now.  I need to focus less on trying to find a spot for myself in the overwhelming, high tech world that's racing past me, on all this supposedly vital productivity, and focus more on the kind of person I am.



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August 28, 2019 shining a light on a special petition!

By | Published Wednesday, August 28, 2019




I'm proud to be part of a group of people who got together to start this petition - link at bottom of this piece - & with Balance Awareness Week - BAW - coming in September, it's time to shine a light on it again.

 The goal of this petition -
"We aim to give vestibular / neurovestibular patients a better chance for swift and accurate diagnosis, a cure or appropriate treatment. We ask for a worldwide agreement on education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions / disorders. "

Scroll down to click on the link, click to sign, & share!

 It took me nearly a year to get my migraine associated vertigo - MAV - diagnosis.  I saw a lot of doctors, & had a lot of tests - MAV can only be diagnosed when a bunch of other stuff is ruled out.

For some people, it takes much longer to get accurately diagnosed. The point of this petition is for doctors to be better educated so that patients can get diagnosed sooner.

Please take a look at this petition, & educate yourself a bit - chances are you know someone with a vestibular disorder. They may not know it - they may not even have ever heard the term vestibular. I know I've gotten quite an education since getting sick back in September of 2011.

After you've taken a look, please consider signing it. If you've already signed it - thank you!

Please share this - if you've already shared it, share it again! Every single signature counts. If you're on any social media, post this petition as a comment where appropriate. E-mail it to your friends & family.
https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care?
Thank you!



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August 25, 2019 Lived experience, emotional health

By | Published Sunday, August 25, 2019



I've been thinking about what the lived experience of having a chronic illness is like. The truth is there's no one answer - there's probably as many answers as there are people with chronic conditions. What I can share is my own experience.

I often feel like I'm in this in-between space. I'm not nearly as sick as I once was - for which I'm very grateful - but I'm also quite different. Different from the me pre-illness. I've said that I'm much more functional at home, & that's true - and I'm glad of that. But when I think of putting myself into some sort of "out there" experience, my limitations rear their obnoxious little heads.

No driving, limited reading, limited screen time, very restricted diet are some the come readily to mind. My ability to process info is definitely better, but I can still reach overload.

In an ideal world, I'd be able to take a writing class - I really do better in interactive environments - but these days, writing classes mean a lot of computer usage. I simply don't have the ability to do that.

Taking a class, or doing any schooling, is simply not an option for me now. Getting anywhere for even as early as 10 a.m. is very difficult for me. Getting up before 8 a.m. is difficult for me, & it takes me about 2 hours to do my whole getting ready routine, & feel like I'm into my day. This isn't a super practical time frame, but it's mine.

I still need to take a break in the early afternoon. Doing things in the evening is possible, but challenging, & not something I do a great deal of.  I don't handle socializing in crowds well, particularly after an event such as a Shabbat service. The result is that my social circle has shrunk quite a bit.

I no longer beat up on myself when I can't do something - I remind myself I didn't choose my circumstances. But it's still incredibly frustrating. I told Ron that I'd worry about how it would be when our daughters were once again gone, each for their final year of schooling, when it happened.

Now it's right around the corner, & I'll miss them. And it makes me think "So what's my own life like, living with my invisible disorders?"
Frustrating, somewhat isolated, full of effort. I chip away in therapies, but it's hard to see possibilities in the big picture sometimes. Very hard.

My therapist Christina would probably say that my emotions seem to yo yo, or ping pong or whatever image you want to use, a great deal. That's true. I guess that's part of my lived experience. Dealing with a lot of difficult feelings, & also doing my best to keep going, notice anything good.



I've realized that, because managing our household became such an incredible struggle for me after I got sick, regaining this ability took center stage. My life has become about managing the household, managing my invisible disorders, and doing my therapies.  This feels, to pardon the pun, out of balance.

I need to spend more time each week on my various creative outlets, even if they are now solitary. More piano, & more drawing comes to mind. I also need to push myself to make phone calls more frequently to friends & family. I don't know what my future holds. What I DO know is that I need to feed my emotional health more right now.



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August 19, 2019 Keep going, one foot after the other

By | Published Monday, August 19, 2019



When I think about the most important pieces to my neurological rehab, I think two things -

1) keep going - keep putting one foot in front of the other.

2) don't get so caught up in wherever you may end up, that you get no joy out of where you are.

Yes, you have to have the correct diagnosis, and the right treatment plan.  But none of that - not even the money to do everything – really matters without the ability to stick to it, to keep on getting back up, over and over again. 

Getting sick flattened my self-confidence. PTSD Anxiety took over.  My PTSD anxiety causes real physiological responses.  My vertiginous migraine and convergence insufficiency (eye teaming) disorders are also real.  But so was & is the work I've been putting in - me, myself & I - in my therapies.  

Therapy of any kind only works if I bring myself to the table.  Over and over again.  Neurological rehab takes effort, time, perseverance, patience.  That's really all up to me.  Even with support – which is certainly important – it still really comes down to me.  That really is the essence of independence.

So here are some things I want to remember -

1) to stay focused,

2) to use experiences to learn from them - the bad ones, as well as the good ones,

3) that I can problem solve,

4) to treat myself like I would a best friend - with self-compassion, kindness


5) Building up a skill set takes time - be patient with myself.

6) to notice when anything - yes, anything!  – gets even a little bit easier

7) to not be afraid to challenge myself - challenge but not overwhelm - I can do more than I think I can.

8) to take the long view - It took a long time to put together my medical team, but it was my tenacity that made that happen. I have to learn lessons over & over, but that's how learning is - I'm retraining my brain. I AM in a much better place than a year ago, and I need to keep going.

About No. 6 - Paying attention to the positive is surprisingly difficult to do. Paying attention so you know when danger is coming makes sense, in order to survive. But it makes sense that paying attention to - really noticing - positives in our lives is equally important.

I write those words because I feel like I'm always saying that I need to pay attention to the good stuff, shout it to the world. But the DOING of that attention to the good is something I consistently fall short on.



So, in an effort to try again with this noticing of the good, here I go -

1) went to Container Store with Cara

2) went to Bed Bath & Beyond

for both of these errands, we knew basically what we wanted, & I pushed the shopping cart at Bed Bath. I also didn't try to take in ALL the visuals.

3) Washed 2 pots

4) Looked thru my Oprah magazine - pictures, headings

5) Let Cara have a sleepover at our house - 3 friends, they used our basement

6) Listened to my audio book in a different part of house because of the sleepover, figured out I needed to switch chairs - so I was flexible, but also problem solved when I wasn't feeling grounded.

7) when Ron, Cara & Leena were talking about travel plans for the end of Cara's semester abroad, I caught myself, & didn't blame myself that I can't handle being part of this trip - I didn't ask for my invisible disorders/limitations.

8) went to New Balance with Cara

9) went to Walgreens, AND the bank, with Cara - the bank was SO nice & quiet after the busy-ness, noise, visuals of Walgreens.

And finally - Even if I don't write down something positive, it still counts if I mentally notice it.  I think it's good to see things on paper, but it's also important to simply think it. To say to myself "hey, give yourself credit for that thing you just did!".



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August 16, 2019 sharing stories matters

By | Published Friday, August 16, 2019



My daughters are growing up, and that's not something I want to prevent. It's the job of every parent to help their children grow up. More and more, adults - whether parents or not - have multiple careers over the course of their lives. If I'm going to be honest, sometimes this is by choice, sometimes not so much.

My situation is in the not so much group. I got sick eight years ago, and the life of music I'd had, & was building up even more for myself, came to a halt very suddenly. My painful reality is that I need to find a different path.

A path that interests me, so I don't feel like I'm doing just to be doing - that feels lousy. I'm scared of having time on my hands - that's when my PTSD Anxiety can take root, it's when Depression sets in... it's just bad.

I also know I need to keep reaching out to people to find new connections. I hate how hard it is. I hate how hard this whole damn process is. I wish my own retraining, my neurological rehab could be faster, easier, that the pieces had come together for me earlier, etc. etc. - but I've got to remember that I DID put the pieces together.

I'm very interested in retraining of the brain, but I know I'm not going to embark on becoming a neurologist. However, that doesn't mean I can't learn anything. I'm fascinated with how color and prisms are used in treatment - in fact, in MY vision therapy treatment.

I've got to keep my eyes on how far I've come, that being able to contemplate finding a different path, a new path is actually progress. It's so hard sometimes to see the progress, but it's there.  

I've also got to remind myself in any way I can, that I'm not alone in having struggles. That's why I believe that sharing personal stories matters; so we each know we're not alone. We each have different stories - no one else is living MY exact story  - and it's in the sharing that I feel less alone, and I suspect others feel less alone as well.



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August 16, 2019 Reaching out, looking for new pathways

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Hi - my name is Tamar & I'm 58. My story is complicated, but the basics can be found on my blog site Visible Person, Invisible Problem if you click on the My story in a nutshell piece - see the first link below.

I do Feldenkrais, Vision & cognitive behavioral therapies. I'm incredibly fortunate to have the support of my family to do all of this, & I do my best to make the most of it. My timeline (second link below) gives more details.

My diagnoses are convergence insufficiency (CI), Migraine associated vertigo (MAV), & PTSD Anxiety.

I'm especially interested in the use of color (syntonics), & prisms for treatment, but I find the whole area of brain retraining fascinating!

If there's another treatment you've done that you'd like to tell me about, I'd love to learn about it.

I'd love to talk to other adults doing vision, or other  therapy, so we can give each other support & encouragement. It can be SO challenging to stay positive, & persevere during lengthy neurological rehab.

You can message me privately on my FB public page - same name as my blog - so we can exchange contact info. I look forward to hearing from folks! :-)

https://visiblepersoninvisibleproblem.blogspot.com/p/about.html

https://visiblepersoninvisibleproblem.blogspot.com/2018/10/october-24th-2018-my-timeline-of.html


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August 13, 2019 the story I'm living

By | Published Tuesday, August 13, 2019




I told Christina that I felt stuck because I'm not independent. The truth is I'm not as dependent as I used to be - I can function pretty well at home. The stuckness comes from something different, from a feeling of "where's my life going?".

I realized the other day that on my blog site, I hadn't said in the "My story in a nutshell" piece, that I was a musician. Well, I was, and I suppose I still am. For five minutes a day when I play my flute. For a few minutes occasionally when I play our piano keyboard. I'm a writer, too, obviously. I'm not published anywhere else. Maybe someday, but for now I have my blog.

I realized that I really don't want to hold my daughters back, or my husband, for that matter. I don't feel jealous, so much as wistful. It's really about what happened to my own life. I ache for the musician I used to be. The connections I used to have. The possibilities. Sometimes I think I shouldn't share the pain, the frustration, as raw as I feel it. But if I want to paint an honest picture, then I have to share, to speak.

I also wonder if maybe I'm really speaking for people who can't find the words, or choose not to share. Part of me doesn't want to share, but then the words start to feel like this impossible weight inside of me. So I'm speaking.

Occasionally I feel a stab of anger, of bitterness. But mostly I feel sadness, an empty, lonely sadness.  Frustration that I live with invisible disorders that are so hard for others to understand.

I want - really, really want - actually need, to find joy, happiness, that I can hold on to - that sticks.  It's very hard sometimes. I know I need to keep busy, keep my mind occupied. 

I know I'll keep going, because it's in my nature. I have too strong a streak of a sense of responsibility.  I also think that life has to, in order to feel purposeful, meaningful, good - to feel like more than fulfilling responsibilities. Maybe I need to shift my perspective, post-illness, on where I find that meaning.



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August 8, 2019 letting in the light

By | Published Thursday, August 8, 2019




I asked Dr. Margolis today if he thought I could still improve, & he said that's why he does progress reports - because he wants a chance to talk with his patients, and also see if there's measurable improvement.

For me, his answer is yes, he can see actual improvement from the last time he saw me. He noted that because he's gotten to know me, he has a real sense of how I'm progressing, beyond purely standard measurements.

Which brings me to an idea that keeps rolling around in my head - that I need to compare myself to a previous point post-illness, not pre-illness. I'm realizing more & more that the picture I have in my head of what I'm "supposed" to be moving towards is really unfair to myself.  

Picturing myself doing some of the things I did before I got sick makes me feel like a failure. But that's totally unfair to myself, & just plain wrong. I didn't ask to get sick, & I've made a lot of progress. It's taken a long time, for a lot of reasons, but my progress is real. So the question for me is how to re-tool my life.

Rebuilding doesn't necessarily mean building the exact same structure all over again. Thinking outside the box, thinking differently needs to happen.

It's hard to recognize my PTSD anxiety sometimes. Sometimes it's an unmistakable, uncomfortable feeling. But sometimes it's disguised as depression, as a feeling of stuckness, of "what's the point of all this, anyway?".

I also still always worry about things going wrong - really wrong. It's hard to move past that feeling. I hate that I have to pace myself, & I worry that if I don't get it right - the pacing, that is - there's that "uh oh" feeling. Same thing when I challenge myself. I worry that I won't recover. But if I let all that negative, anxious stuff get in the way of thinking that some things can still be possible, it's like a huge dark blanket over my brain.

That blanket sucks out every bit of light. There's no room for creativity, or imagination. For thinking outside the box. Saying "OK, maybe you won't do what you once did, but maybe there are still possibilities for you. You really just need one or two ideas to work - not dozens!"

I've got to let all those bits of rehab work in me, like little bits of light coming through little openings in the negative, anxious blanket that threatens to cover me up.  Those bits of light can add up to something. 


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August 5, 2019 new social network, support

By | Published Monday, August 5, 2019



I looked at a post written May 16th, 2018 (My positive List), & saw how far I've come in a little over a year. It's important for me to see this. It's also important for me to recognize that I'm not going to do things exactly the way I did prior to getting sick, so a slightly different mindset matters.

People like to have stories with endings, with neatly packaged words of wisdom - life lessons if you will - delivered. I really can't offer that. What I can offer is a window into how I approach my life situation, my problem solving.

I am committed to continuing to do my home therapy vision exercises, as well as my Feldenkrais. I will try things that feel worthwhile to me - doing things purely to fill time doesn't feel good.

I'll do what I can to continue to build my stamina.

I want to fulfill my responsibilities as best I can.

I don't do the musical activities I once did, which provided a rich network - it's time for me to move on.  I don't know if I'll find new activities outside my home, but much of what I do for enjoyment is solitary - fulfilling, but solitary.

I need to find a new social circle, an in-person social network, people who understand & are supportive of my health situation. I'm grateful for my family, & for the friends I do talk to, but I need something more.

I'll need to figure this out.  I'll start looking for a support group by talking with my therapists, & anyone else who may be helpful.



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August 1, 2019 - Neurological integration - layer upon layer

By | Published Thursday, August 1, 2019


This drawing is what grew out of my thoughts about neurological integration... I thought about all the bits that slowly come together, forming a new, larger piece, & how those pieces then become building blocks for more - so there are layers of neurological integration.

The "x" is because of how, to me, all my therapies intersect, & build on each other. Interestingly, my vision therapist Ann - to whom I showed the picture on my phone - said that diagonal lines, as opposed to using only horizontal or vertical, are a sign of integration.

The popcorn vectogram is a tool I used today for convergence and divergence, & I was proud of how long I was able to use it before needing a break.



I also used one of those old fashioned overhead projectors with a transparent picture of a bunch of mice on a skating rink - I had to find different objects hidden in the mice.

I was able to find seven (one was a pair of glasses hidden in ears, one was an ice cream cone in a hat), some of which I pointed out by circling the appropriate mouse, & crossing out the picture on the border.

My session was a work-out, but I thought to myself when I was done "I really AM making progress, understanding this whole process of integration - it really would make no sense to stop. PTSD Anxiety's physiologically reactive. But I can work, slowly, in layers, to recognize it, and hopefully respond and healthier ways. I need to keep going."

I'm incredibly lucky & grateful to be able, nearly eight years in, to be able to do my interconnecting - Feldenkrais, vision, and cognitive behavioral – therapies.


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