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...

June 12th 2015 More of my story; vision - complex, and too often overlooked

NOTE: Use Google translate to listen if needed

If you Google on Vision Therapy or Vision Training (VT), you don't come up empty.  Likewise if you do a search for Convergence Insufficiency.  That's a good thing, but begs the question as to why more optometrists - or ophthalmologists - don't routinely check for issues beyond eye health and things like near or far sightedness.  Likewise, adults who complain about dizziness and/or vertigo don't get asked about their vision.  To me, this is a huge problem.

I started doing VT in May of 2013, over a year and a half after I got sick.  I'll discuss more later about how I ended up in VT, but it's worth noting that not long after I started, I talked with my therapist Ann about why I had my disorder.  I never had blurry vision, which is a fairly commonly reported problem for people suffering from vertigo.  Ann said that she suspected I'd had a vision problem all along that was never diagnosed.  Given her many years of experience as a therapist working with Dr. Margolis, a Developmental Optometrist in the Chicago area, who has an excellent reputation, this got me thinking and wondering.

I do VT for Convergence Insufficiency (CI).  This means that my eyes don't work together properly to send coordinated messages to my brain.  The VT is retraining my brain.  BUT, I'm convinced that my CI didn't start when I got sick in 2011.  Specific Google searches for adults with CI don't come up with anything, which I think is because behavioral or developmental vision problems like CI start with kids.  The problem is that kids often don't talk about how they see something.  It's not exactly playground conversation, so if nothing shows up in their school work, no one knows.  Unfortunately even when something DOES show up, something like CI is not typically the first thing that's checked.

Looking back, I think there were some signs I had a problem.  I hated large textbooks, especially the ones with pictures as well as words.  I remember reading lines of text in history books, and having no idea what I'd just read. I think tracking long lines of text was really hard for me.  And math was a struggle - trying to make sense of numbers all over the page.  I eventually decided I was really bad at some subjects, though in retrospect, I think I was actually doing really well.  Reading small paperback books was easier for me.  I liked reading aloud, which makes sense - reading out loud is slower, so it's easier to process, and it adds the audio component.  And reading music worked fairly well, though even into adulthood, I was bad at sight reading.  I was never able to watch movies in 3D, had motion sickness, and was somewhat prone to headaches. 

So that was back in the 60's and 70's.  I recently connected with my friend Michael on FB.  He's in his late 20's and did not receive the care he needed when he was young.  When my older daughter Leena (who is 19) was in school, again, no one tested for CI or Strabismus or Exophoria, etc.  Leena has since told me she saw double, but didn't know other kids DIDN'T see this way.  No one ever asked her.  Her writing was small and neat, and she never appeared to struggle academically.  Finally in her senior year of high school, after I'd begun VT and she came home complaining of horrible headaches, I decided it might be a good idea to take her to Dr. Margolis.  I took my younger daughter Cara as well.  I do believe there's a genetic component to CI, and sure enough, both Leena and Cara were diagnosed with CI.  Only Leena's CI was serious enough to require VT, which she did. 

So now back to me.  During the first few weeks after I got sick, I saw a neurologist several times.  I remember telling him that I was having trouble with my eyes, that I couldn't read.  He basically blew me off.  So I went home and said to myself "OK, I am going to read," and proceeded to read a few sentences in a book.  I looked up and my world was spinning.  The spinning stopped, but clearly something was very wrong.  Over the course of that first year, when I was tested to see if there was anything wrong with my ears - nothing medically significant was found - no one asked me about my eyes.  Some of the tests were horribly difficult for me, and I remember thinking "is it really supposed to be this bad if my ears are normal?!?"  I remember seeing someone post that the tests were "fascinating!"  I was too busy feeling miserable to be fascinated.  After I had already begun VT, I was examined by a neuro-ophthalmologist to confirm Dr. Margolis' diagnosis.  I was again told there was nothing "medically significant" wrong with my vision.  Surely just because a problem doesn't get fixed with surgery or medication doesn't make it insignificant!

Now more about how I ended up doing VT.  The first time I saw my Feldenkrais therapist, Joyce, I told her that I had something wrong with my eyes.  She said I might want to go to a developmental optometrist, but that she didn't think I was ready to handle doing two kinds of therapy.  I'd never heard of this kind of doctor.  I'd had a check up with my ophthalmologist early in my illness, but that exam only covers focusing issues, and disease.  I told him what happened to me - at that point the only diagnosis I had was BPPV (treated with Canalith Maneuvers) - and he said nothing.  I'd already been tested for Parkinson's - this is a pretty easy, standard test.  I'd also had, among other things, an MRI, hearing test, etc.  Vision is key to balance, and yet no one ever talked about my eyes.

I wrote in "When my challenges really began" about my hand problems, which I believe stem (as happens to too many musicians) from what ISN'T taught to flutists, and I suspect many instrumentalists. I am now learning to pay attention to my body.  Carpal Tunnel Syndrome was a trauma to my system.  I believe it's quite possible that getting sick was also trauma to my nervous system, and made a vision problem (CI) that I already had to a lesser degree MUCH worse.  I also have problems with my Vestibulo Ocular Reflex (VOR) - (from Wikipedia - This reflex functions to stabilize images on the retinas (in yoked vision) during head movement by producing eye movements in the direction opposite to head movement, thus preserving the image on the center of the visual field(s).)  I think the combination of getting sick, and waiting a long time till I even had my MAV diagnosis, not to mention my CI, were bad for me regarding my vision problems.

I don't believe that all optometrists or ophthalmologists should do as complete an exam regarding functional vision as developmental or behavioral optometrists do.  I DO believe, however, that ALL eye doctors should do some basics that go beyond how well patients focus, and whether or not their eyes are healthy.  Both of those are very important, but function is extremely important as well.  Examining some functional elements should not be a specialty, although I think VT should be left to the specialists; the eye doctors who truly understand the functional elements of vision.  I ALSO feel strongly that adults who complain of balance problems should have vision tests that look for functional problems.  Last but not least, because vision - not only near and far sightedness but vision - is SO important on multiple levels for learning, teachers need to be on the lookout for tell tale signs of vision problems. 

Having more understanding of how all the pieces came together for me doesn't change my disorders.   It DOES make me more determined to have people realize how important it is to get early proper diagnosis, whether you have a vestibular or vision disorder, or a combination.   Our bodies are not made up of all these different compartments, one separate from the other; one system can easily impact on another.  Having a balance problem which is diagnosed as a vestibular disorder doesn't mean that it's all in your ears - vision is a complex sensory system that mustn't be overlooked.


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May 29th 2015 Figuring things out, putting in the effort

I've been thinking about my goals - what I'm working towards - and actual game plans right now.  Even though not doing the work - not doing the rehab homework - is tempting sometimes, I know if I don't put in the effort towards my goals, in the end that would leave me very frustrated.  This got me thinking about words that I've used, seen, and heard a  lot:  "limitation," and "challenge," or "challenging."  I decided to look them up on Dictionary.com.  
These are some of the definitions I found:

Limitation -
Restrictive weakness, lack of capacity, inability or handicap
Difficulty in a job, or undertaking

Challenge -
a call or summons to engage in any contest, as of skill or strength
a call to battle

Interestingly, the word "challenging" has a very different definition, and is more of a pairing with "limitation" - "challenging" is "offering a challenge, testing one's ability, endurance".

When I look at all these definitions, the ones that jump out at me are "lack of capacity" for limitation, and "testing one's ability, endurance" for challenging.  Lack of capacity means capacity simply isn't there, and I think sometimes for some disorders, that's accurate.  If you don't have the use of a body part (like a leg), that really does qualify as a lack of capacity. However, I think in a lot of situations, this definition of limitation is a bad, outdated one.  There's lots of gray areas with a lot of disorders, many times when I think using the word "diminished" instead of "lack" of capacity would be much better.  Standing, sitting and walking are different for me than they used to be.  My ability to balance myself isn't, and was never completely GONE; I AM able to walk, to sit, to stand. 

The phrase "call to battle" for challenge surprised me, because battle is a strong word.  But in a way, it makes sense.  I think of a call to battle as marshalling the forces, which to me (in terms of my invisible disorders) means gathering up tools, and using those tools to succeed.  In my case, and hopefully those of others, tools can be diet, various therapies, coping mechanisms - basically anything that you use to help you to be successful.  And I definitely think the word challenging is very fitting... your abilities and endurance can be tested, even pushed to the limit.

So there's that word again - limit.  The real issue to me is figuring out when, or if, a limitation really is a stop sign.  When does a limitation require a work around, or acknowledging that something can't be done, and when does it  not?  More importantly, when does a limitation push you to challenge yourself, to say "OK, what tools can I use to move through this?" 

That question brings to mind the following quote from Michael J Fox - if you haven't read his autobiography "Lucky Man," I highly recommend it. 

"Acceptance does not mean resignation.  It means understanding that something is what it is, and there's got to be a way through it." 

I thought about the quote in terms of how I live my life.  For me, this quote means that you don't deny the reality of your situation, but you don't give in to it either.  Saying that there's "a way through it" doesn't mean that you cast aside or ignore your problem.  But you keep moving through life with it, figure out how to still achieve your goals.  I didn't know what limitations I would end up with - none of us ever knows that.  I did sometimes wonder if my Reactive Hypoglycemia would morph into Diabetes.  Instead, I ended up with Migraine Associated Vertigo (MAV) and pronounced Convergence Insufficiency (CI) with complications, invisible disorders I'd never thought about or heard of before. 

I've talked a lot about my Feldenkrais and vision therapies, and my therapists, that I'm grateful to work with good people and to be making progress.  Even with my therapies, I think there's a good chance that I will always have SOME degree of limitations.  I don't think that saying that I'll have limitations, even with all the work I'm doing in my therapies, is "throwing in the towel."  I'm NOT saying exactly what my limitations ultimately will be, that I'm done putting in effort to improve.  Everyone has limitations; maybe mine came a bit sooner than I was expecting, and particularly regarding my vision disorder, not necessarily what I was expecting. 

The other side of some degree of limitation, is challenging myself now, in the present.  The choices I make, the small - sometimes very small - goals I set in order to achieve bigger goals.  This is why rehab is such an integral part of my life.  I talk to my therapists about my goals, and then we take things apart, break down the goals to decide what the pieces are that I need to achieve and how I can achieve them.   I also want to say that I realize not everyone reading this has the answers they need, and/or the treatment they need.  I am always hopeful that that will change for those people, and I hope that sharing what I learn along the way is helpful. 

I don't know if this will always be the case, but I've learned that right now, if I don't expose myself to something frequently enough, it feels like I have to re-learn it when I do it again.  When I attend a large event - and large to me is really anything that more than a dozen people attend - it's challenging for me.  I am pushing my current abilities to handle noise, lots of people moving around, etc.  But being able to go to social events, be around people, is important to me.  So I went to the Confirmation class Shabbat service, and the last day of Sunday School.  I plan what I can, use coping skills I've learned, and these events push my level of endurance.  Attending events like these is tiring; I do what socializing I can, and then I need to go. 

Sometimes doing something pretty ordinary can be challenging for me now.  I planted some flowers in flower pots recently, with the help of my daughters.  I took breaks, and by the time I was done I knew I'd pushed myself.  In terms of balance and visuals, it was difficult.  I knew it would be, but I decided I wanted to participate, and I love looking at flowers, especially after the dreariness of winter.   

These are just two examples; there are choices I make all the time.  I remember that there are certain things that build on other things.... this is where being able to talk to my therapists is really helpful.  My list of major goals - like socializing, and teaching flute again - isn't a long one.  I need to keep it manageable, and that only happens if my list is short, because there are a lot of pieces required to complete my picture.  Sometimes my picture feels much more like a puzzle, than a coherent whole.  I think of too many things I want to work on, too many pieces.  So then I need to step back and say "OK, one small step at a time."  And eventually - I don't really have a timetable - I can add something.



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June 7th 2015 Getting people's attention, thinking about other's experiences....

Note:  Use Google Translate to listen to this if needed

It's hard for people to "get" something when their own experiences aren't really that similar.  This "getting it," or understanding, or lack thereof, can come through in really small ways.  I've been thinking about this for a number of reasons, one being that I finished listening to Amy Poehler's book "Yes, Please" recently.  There were a couple things that really stuck out to me, and it also got me thinking about how celebrities can bring a great deal of attention to various issues.   How things like catchy slogans or gimmicks (for lack of a better word) - like the ice bucket challenge for ALS - can raise large sums of money.

I thought that though Amy Poehler recognizes how lucky she is, and appreciates what she has achieved, there was something a bit insular in general about her outlook.   This really came through at the end of her book, when she writes about technology.  She talks about how people (herself included) are addicted to things like smartphones, e-mail, etc.  This is her experience with technology, and she completely overlooks the ways in which technology helps people.  For example, allowing people - like myself - who are limited in terms of what they can DO, to connect with people online.  I'm not saying she should have focused on that, but she doesn't even mention how technology can make a real difference in people's lives, and I suspect she's not the only one who doesn't think about this.

This lack of reaching outside of your own experience, hearing what someone else is dealing with, frustrates me.  My invisible disorders make me sensitive to issues that I think some people don't spend much time thinking about.  I've experienced, in small ways, other people not "getting" something because it's beyond their own experience.  I know it's difficult to imagine being in someone else's shoes, but it's also really important to try to do just that, or to acknowledge you really DON'T know what something is like.

I know people don't always want to put in the effort to think about others.  Sometimes I'm not in the mood to think about other people's situations.  I'm very into myself, and I really don't want to hear about someone else's news, good or bad.  I'm guessing that most people with chronic health conditions (and some who don't) feel this way; have times when they're not up for hearing about someone else's life.  And some things are easier for people to think about than others.  I think my MAV is a bit easier to grasp in some ways, although no two people's experiences are identical.  My vision disorder is definitely harder for people to "get"; many people don't understand the complexity of vision. 

Which brings me to my point about celebrities and raising money.   Celebrities - people who are high profile - can have a truly magic touch in bringing attention to an issue where it is sorely needed.  This has happened numerous times.  While there have been a few celebrities who have given an occasional interview about their vestibular disorder - Kristen Chenoweth and Ryan Adams come to mind - to my knowledge there hasn't been anyone who has really held the public's attention. 

I feel jealous when I hear about the ice bucket challenge, or a celebrity who is blowing the door wide open about a particular issue.  It would be so absolutely wonderful to have someone do the same thing for vestibular and vision disorders.  Vision is so intricately connected with balance; a discussion of balance isn't complete without including vision.  So it makes sense to me to pair vision with the vestibular system, in terms of bringing both into the light of awareness.

September brings VEDA's Balance Awareness Week, and I'm hopeful that it will be successful.  If you don't have a particular person who can get everyone's attention, I think it really does take an organized effort to create change.  Unfortunately, I haven't found such an organization for non-disease related vision problems for adults.  So I will keep posting what info I find that helps bring awareness about the complexity of vision.  How important vision is for processing all the sensory input in the world around us, and how integral vision is for balance. 

I believe there's a growing awareness about health issues in general, and people like myself with invisible disorders need to advocate for this awareness.  Because then there can be understanding and hopefully learning, and money for research that provides answers.  I don't believe that doing this advocacy, or being on the Ambassadors Board of VEDA is why I got invisible disorders, nor why anyone else did, for that matter.   But it's definitely good to feel like I can, through sharing my journey, offer hope and make a difference towards building awareness.

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