July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for December 2014

December 28th 2014 Attitude and what I CAN do

When I write, I try to be honest and realistic, but also ultimately to convey hope and a sense of possibility.  That's really how I try to approach living with invisible disorders.  I don't believe a positive attitude causes miraculous healing, but I DO believe a hopeful attitude helps.  There's a ton of research about health and attitude, but regardless of research, I know that feeling hopeful, even optimistic helps me cope.  That said, I don't think you can get to the other side of feeling down or angry or whatever, if you don't let yourself feel all of that; that's definitely how it is for me.  I feel like the trick is not to hold on to, get really stuck in those hard, painful stretches.  I have to let myself feel, and then I can let it go.  Sometimes it takes a conscious effort, but for me letting go needs to happen.  After I move through and let go of all the tough stuff, I step back and take a look at where I am. 

Once I let go, I can think more clearly, see where I am, and if there is anything positive to hold on to.  I sent an e-mail to my parents recently talking about Feldenkrais, and what it's done for me.  I still don't completely understand how Feldenkrais works; I certainly can't do on a neuromuscular level what Joyce does for me.  But I think I finally get some of the basic principles, and I know it works and is helping me.  All my small steps really do add up, just like toddlers learning to walk.  Dr. Glad always says that baseball players never have perfect batting averages, and if the rest of us could adopt those same expectations, we'd be a lot better off.  I also was messaging a new and wonderful FB friend who is really suffering, and wished I could help her.  It made me realize that even with all the difficulties, real though they are, I have to really pay attention to what I can do. 

When I don't feel good or I'm frustrated, I tend to jump to worst case scenario conclusions way too easily, as I think a lot of people do.  This tends to head me down a road of worry and anxiety.   As I often remind my daughters, life is not black and white, one extreme or the other.  Even though my situation is not a best case scenario, that doesn't necessarily mean it's a worst case scenario either.  There is a middle ground.  In my middle ground there is stuff I can do.  I'm not talking about what I'm grateful for, although that's important.  I'm talking about giving myself credit for what I CAN do, for what is a direct result of the work I do, the effort I put into rehab.

So here is some of my "I can do it" list:

My body recovers now from working really hard - a definite result of doing rehab. 
I am physically able to do basic cooking.  This results in healthy meals, which adds so much to my well-being and that of my family.  
I can write this blog - this is a big deal for me.
I can listen to articles online, and yes, I need to use Google Translate, but being able to process the info is a big plus. 
I'm able to listen to more audio books than I used to. 
I can read some of the Sunday Comics.
I can read the headlines and small bits of articles from part of our local paper so I know the basics of what's going on in my own back yard. 
I'm able to play my flute, and listen to music. 
I can walk our dog with my daughter, hold the leash myself, and talk with her while we walk.  This is huge.
I can watch a movie on our smaller screen TV, with an intermission.
I'm able to do some basic housework in addition to cooking.  An example of viewing this positively instead of negatively is that I'm choosing to think about the housework I CAN do, not the tasks I need our cleaning service to do.

I was able to celebrate Chanukah with Ron and Leena and Cara.  This meant singing two short songs with them, and not having trouble with the sound of my own singing resonating in my head. 

I'm thinking about what I will do when Ron and the girls go to the Field Museum.  Not just the regular stuff, but about what I can do - with writing or music - that I'll enjoy.  Regular stuff is necessary and fills up time, and I'm glad there's regular stuff on my "I can do it" list.  I've said before and I still believe that it's good to be fundamentally functional, but no one wants to fill time with the basics, all the time. 

Though not an accomplishment, it's worth noting that I do feel fortunate to live in an area where the medical care that I need is available to me.   Also that I have health insurance and financial support to cover all the expenses.  My situation would otherwise be vastly different.  I truly feel for those who struggle with these two pieces.  Knowing what you need, but not having access and/or not being able to cover the costs is terrible.


It's easy, very easy, for me to dwell on my limitations, what I still need to work on.  I don't know, maybe it's human nature to notice what you're not happy with, what needs to be improved upon.  In our incredibly fast paced world in which change seems to happen at warp speed, it's hard not to compare myself, my life, to others, whoever the others may be.  People like me, who are working to regain their health in some way, have to be careful who we compare ourselves to.  Everyone, I think, measures and sometimes judges their personal success, individual accomplishments. It's easy to forget that success can be measured in so many ways.  I remind myself that for me it's about the effort and progress I make, and I know my daughters have, and continue to learn from me on my journey.  I'm going to mentally hold on to my list of what I can do, and keep it close at hand.  For me, and anyone in a similar situation, success isn't about speed, it's about continuing to add to my "I can do it" list.  

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December 22nd 2014 After the party

Sometimes I hate my invisible disorders.  That's when I feel like there's a volcano of emotion erupting inside of me.  An explosion.  I hate how hard some things are, I hate that Ron and Leena and Cara have to live with it, these disorders that are now part of me.  I hate what I miss out on.  I hate that even if I'm doing something, it's not how it used to be.  I have to think about certain things on a conscious level now, and it's gets exhausting. 

Parties just aren't supposed to be so much work.  I've learned that 17 people, nearly twice what Thanksgiving was for me, is too many people for me to be able to participate in conversations.  Too many conversations going on at once, too much to process.  I just can't do it right now.  I was touched when a cousin told me she'd read my blog, but realized she didn't quite get it when she showed me something her daughter had written.  I handed it back to her, and I'm not sure she heard my words as I gave it back.   I can't read a full page of words.  I'm certainly not going to try reading anything on a page at a party when my system is working on so many levels. 

Bodies can be so goddamn weird.  I know my team of professionals wouldn't say it's weird, but it FEELS weird and confusing and complicated.  Menorahs are beautiful, and if I remember to "look soft" I can look at it, but not for too long.  The candles dance, which is cool, but makes them hard to look at.  That's how it is for me.  I'm glad I could settle down to get to sleep the night of the party.  The fatigue I feel is immense, not so much physical as mental.  It's like my brain just shuts down, refuses to process any more information, even just one little bit.  I'm glad that I know I can recover, and I know I need to let myself feel the frustration, but I hate it.  I hate that I can't tell my nervous system to just do what I want it to.  Well, I can but it won't work. 

I wonder how much therapy I'll have to do.  I wonder how long, how much work it will take for my current reality to slowly morph into something that feels acceptable to me... I know that no one knows the answer.....

"It's a beautiful world and I can't see it"  - that's how I feel at times - as if it's a wonderful world, but it's out of my reach, and I can't live it the way I want to now....experiencing some parts of it is beyond me.... so what did I do while feeling all this anger, frustration and sadness?  What did I do with myself while I was in this hole, to heal myself, pull myself out.

I wrote in my journal....I can let the words spilI out any which way because no one else will read them.  I played my flute, letting the music burst, fly out of me.  Then I played from memory, "Where is my light?" a song from our congregation -
"Where is my light, my light is in me, 
where is my hope, my hope is in me, 
where is my strength, my strength is in me, 
and in you, and in you...".  

This song is a favorite of my rabbi, and some people may tire of it, but it's a lovely melody, and the words, when I really think about them, move me.  My light, my hope and my strength - I really need to draw on all of that when I'm struggling.  But I like that the last part is about being connected, that I/we need others to help us.

Then I let my music tumble out again....then I went on Facebook.  I messaged a couple friends.  I had a lovely surprise when a friend who was in the neighborhood dropped by unexpectedly, so I took my afternoon walk with Cosmo with her.  Doing this on a day when I'm not fully rested was a stretch, but it was worth it.   Then I watched some videos that were posted which really fit my mood of needing to try to find a better perspective, remind myself of what I can do...focusing on the positive is extraordinarily hard to DO sometimes.... but I have to keep moving, because staying stuck is a really bad option. 

So I wipe away the tears, take many deep breaths, and life goes on.....I thought about whether or not to post this, and obviously I decided to share it.  I remind myself when I'm feeling jealous of those who LOOK fine, that they may have their own invisible struggles.  I think about people who really don't have major problems at the moment, and hopefully one or two of them will read this and be reminded to be grateful for what they have, and compassionate to those less fortunate.  I recently read a beautifully written, very honest blog by a young woman battling with Depression.  As I listened, I thought about how people don't understand invisible disorders unless those of us living with them share the moments when we struggle, and then manage to pull ourselves forward. 


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December 17th 2014 Rehab - Effort and progress

Every two to three months I have consultations with Dr. Margolis, the Developmental Optometrist who supervises my vision therapy.  He calls them Progress Reports (PR) because he wants to know what kind of progress I'm making.  I had one recently, and it got me thinking about effort and actually making progress.  Although I get good news, we also talk about what I am still struggling with in my life, as well as whatever part of therapy is difficult for me.  We talk about what needs tweaking, or changing.  I often end up with mixed feelings after these PRs.  I feel good about my progress.  But I'm also reminded of, and feel frustrated about my limitations, the things that once were simple, and now are difficult.  When I feel like this, sometimes I find myself thinking "well, what if I just said enough rehab?  What if I decided to stop?". 

Comparing myself to when I was really really sick to the present, I can see very obvious improvement.  But more subtle comparisons can be harder to see, to feel, to appreciate.  Those times when I lose sight of those subtle improvements, that's when, if I let myself, I can get discouraged.  That's also when I hear Dr. Glad's voice in my head saying "that subtle stuff, that's what rehab is really about."  It's not only about going from feeling horrible to better, meaning feeling better rather than feeling horrible.  That's important, but it's not the whole picture.  The whole picture of rehab is about the work, the effort day by day, week by week over the long haul.  Rehab is about making a choice to keep going, to keep making progress.  Ultimately even though having wonderful people to work with is crucial, it really comes down to me.  I think it's the same for whoever out there is doing rehab of some kind.  It comes down to the person DOING the rehab.  It's saying to myself "I'm making the choice to keep working, keep making an effort." 

Then I start thinking about why I do my rehab, why I make an effort.  I think about what effort really means, because rehab doesn't work, isn't successful without lots of effort.  I was really struck by the definitions I found when I looked up the word "effort."

exertion of physical or mental power

an earnest or strenuous attempt

something done by exertion or hard work

There are a few other definitions, but these seemed to fit the best.  The word "strenuous" jumped out at me, because that gives me an image of really hard, taxing work.  An image that definitely fits rehab.  But the one that really got me was "exertion of physical or mental power."  An exertion of power.  Exertion is exactly how it feels, but the other word is important - "power."  I tend to think of rehab as an activity that drains me, because it takes, in my case mostly mental, power.  But rehab also gives me a kind of power; it enables me to work through my problems, albeit very slowly.  Especially when I work to be able to do more IN rehab.   Doing more, being able to do harder, or new activities in rehab is important.  That gives me power, enables me to keep moving, keep going forward. 

It's really important for me to keep that idea of power, of being enabled, in mind right now.  This is, honestly, a difficult time of year.  There are special events for the holidays, connected to school, if you have school age kids.  There are family events, and people plan special outings.  I understand that all these things are part of life, an important part of life.  But I can't participate freely the way I want.  I have to miss out on some things, figure out what I can manage.  I attended our congregation's Sunday School Chanukah party, and our family party which we are again hosting, is coming up.  I'm glad that these are two events I can participate in.  I remember the first year I was sick I opted out of hosting our family party, and in fact did not attend it, so to be a part of that is obviously good.  Family members pitch in to make the party more manageable.  I'm getting better at asking for what I need, learning what works, and I do my best to manage whatever I have no control over.

Being in a room with a lot of other people is a challenge for me.  There's a lot of different stimulation; noise, movement, the general hub-bub of people gathered together.  If I know a decent number of people, and the location is familiar, that helps.  I try to concentrate on what I can do, as opposed to whatever is challenging.  At the same time, being aware of what is difficult helps me to manage, to cope with whatever is difficult.  Even if it's just saying to myself "OK, this is hard, and you know WHY it's hard, but you'll be OK."  When I've chosen to go to something, or do something, I go with my choice.  I don't tell myself "you shouldn't have done this/been here, you made a mistake."  I know that part of rehab is taking some calculated risks.  The benefit needs to be worth the cost.  I don't want to do something that will make me feel really bad, and will require several days of recovery.  But doing something that really tires me out, and needing a very chill day the next day is acceptable.  It's impossible for me not to think about what I used to be able to do.  It's also impossible for me not to think about how some things that once were easy, are now difficult for me to do. When I do miss out, I let myself feel sad, even angry, because I figure if I don't, I'm asking myself to be a robot, instead of a feeling human being.  I tell myself again that every small change in what I handle counts, and I make sure to note it in my progress log. 

I don't understand everything about vision or my vestibular system, but I do understand much more than I used to, and know why certain things are difficult for me.  Sometimes understanding means a problem can be solved, but for me, understanding, knowing, doesn't fix my problems.  I need to leave the figuring out what to do, the how to fix it part up to the professionals I work with.  I know that Ann and Joyce and Dr. Margolis and Dr. Glad won't give up on me.  That's a big part of why I stay in rehab, to have my team.  I also realize that the most important person in the equation is me, so I tell myself that above all, I can't give up on myself.  I have to keep making the choice, over and over and over again, to do the work.  To put in the effort at rehab, and at home, and wherever I AM able to go.  That's the only way I'll keep making progress.


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December 10th 2014 Advocacy Helps Everyone

19.  That's how many Ambassadors VEDA has now.  This includes several outside of the U.S. , and as a group there has been quite a range of activities in the few short months since the Ambassadors Board began.  People tend to think of high officials when they hear the word ambassador, but an ambassador is also a representative for something or someone.  To me, being an Ambassador for VEDA means that I'm an advocate, a voice for those with invisible disorders.  Part of that to me means being a kind of educator.  My degrees are in psychology and English literature, with a Master's in Human Service Administration, not Education.  I don't think my education was a waste of time by any means, but sometimes degrees aren't all that's needed. My thoughts and experiences are now colored by, affected by my invisible disorders, and what I learn through my therapies.   As an Ambassador, I'm sharing pieces of my journey. 

There is no shortage of info to take in, in this vast, interconnected world.  Everyone makes choices about the new information they take in, process, absorb.  I spoke to someone recently who said she doesn't follow the news, knew nothing about what happened in Ferguson (this was prior to Garner's death).  To my knowledge, she doesn't have any health or other major issues going on, so I have to admit this surprised and bothered me.  I know there are others who follow issues, whether political or social, more closely than me.  I'm sure there's plenty of news (especially due to my vision disorder) that I don't absorb, but I do try to be somewhat informed about major stories.  I care about the racism that clearly still exists in the States, as well as what appear to me to be serious problems with police and our justice system. I've had conversations with my daughters about very real problems, as well as what's good, about our school system.  I share posts on FB about these, and other issues I care about.  But in the end, there are many issues I don't personally feel qualified to write about in depth. 

Back to being a VEDA Ambassador.  I do feel qualified to write about various issues related to invisible disorders.  My own medical journey to find answers, actually living with invisible disorders, and living with someone with an invisible disorder (Ron has Bipolar Disorder 1 with Anxiety) qualify me.  I've had important conversations with FB friends, and people connected to VEDA dealing with living with invisible disorders.  I talk to my therapists, and am constantly putting more pieces together.  I learn from all of this, and be a better advocate.   Many invisible disorders are complex, and the medical community still has so much to learn.  A lot of that knowledge can come from medical training, which is important and needs to improve.  But it also needs to come from feedback from patients, the ones actually living with disorders, looking for accurate diagnoses and effective treatments. 

Education doesn't just happen in the classroom, although what happens in the classroom is really important.  I asked myself the other day what the goal of education was, and yes I looked up the word "education."  Here's the definition:

"the act or process of imparting or acquiring general knowledge, developing the powers of reasoning and judgment, and generally of preparing oneself or others intellectually for mature life.
and
the act or process of imparting or acquiring particular knowledge or skills, as for a profession."

Formal education is important, but in addition to a profession, I think a lot of the above can be applied to advocacy, trying to informally educate the public. Advocacy can create change in a variety of ways, and that creates progress.  Someone with a well-managed invisible disorder, rather than mainly needing to be taken care of, can be a functional member of their household.  That person can also contribute, even if they don't have a paying job, in their own little pocket of the world.  Despite this, there are times when I feel like advocating for people living with invisible disorders, being heard, is a strange sort of competition.  With so many issues worthy of our attention, it makes it hard to hold anyone's attention long enough to really have an impact. 

That said, I also feel that in the end advocating for change, both in attitude and in action really does pay off for everyone.  People with vestibular, balance or vision disorders (just to name a few) want not just to be heard and understood, but to be contributing members of society.  Everyone wants to have purpose, to feel valued. Enabling people to work, to be independent is sometimes complicated, requires some problem solving.  I've been listening to "Think Like a Freak: The Authors of Freakonomics Offer to Retrain Your Brain."  None of the ideas that they've presented so far sound freakish, and it is not, in my opinion, brain re-training.  It's more about thinking in a non-traditional way, getting past emotions to think clearly and logically, and figuring out how to deal with problems.   

I said that to be an Ambassador, an advocate, means to be an informal educator.  But I don't think anyone can be effective as an advocate if you leave compassion at the door, and only think in practical terms.   If you don't care, there's really no point in being an advocate.  I'll give one more definition here, for the word "compassion."

"a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering."

The phrases in this definition that got my attention were "stricken by misfortune," and "desire to alleviate suffering."  There's no question when I look back on my worst days, or comments that I've seen posted online, these words fit those with vestibular and balance disorders.  There are other invisible disorders that unquestionably also fit.  It's one thing to be bedridden for a few days with a nasty virus.  It's quite another to spend large portions of your days, for weeks, or months in bed.  Once I found the right therapy for me, when I first worked to get more mobile, I walked down my driveway.  Then I began going down my driveway, and walking one or two houses down the sidewalk.  I gradually increased, adding one or two houses every few days.  Regaining mobility had a huge impact on how I felt about my life.  I don't think about this all the time, but remembering occasionally isn't a bad thing.  It reminds me on my bad days now, to keep perspective, and it reminds me why I want to advocate for others to make progress.  A therapist once told me that people can get what she called compassion fatigue.  That if there's too much demanding emotional attention, people either tune out, or show a bad attitude. 

I have to believe, despite change coming slowly, "compassion fatigue", and all the issues demanding attention, that it's worth it.  That as a VEDA Ambassador advocating for those with invisible disorders, I do get people's attention.  I don't begrudge people speaking out about bullying, political problems, the environment and more.  And I want to be informed, so I absorb what relevant, reliable information I can, and try to learn from others. But I want to be an effective advocate, which to me means writing about, and advocating for what I know and personally experience.  People with invisible disorders, because I feel very strongly that we need a voice.  Good health is an incredible asset.  During my first year of illness, when I spent so much of my time in bed, I was keenly aware that I wasn't productive, and I hated it.   Now I want doctors and anyone who deals with people with invisible disorders to learn, pay attention, gather information that will help.  People who are suffering need to be heard, along with all the other problems in this incredibly complex world we inhabit.  If everyone who cares about something speaks out, there is a very powerful collective voice for change.


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December 2nd 2014 Stigma separates, isolates

The meaning of the word stigma is powerful.  I looked up the dictionary definition, and here's what I got:
1. a mark of disgrace or infamy; a stain or reproach, as on one's reputation.
2.  Medicine/Medical.  a mental or physical mark that is characteristic of a defect or disease:

Look at those words: "defective, diseased, stained, disgraced."  These definitions make me cringe.  The opposite of these meanings are constantly promoted in various forms of media.  Advertising promotes perfection, including hiding any imperfections, or flaws, and how to look young forever.   I think it's easy to understand that anyone with a problem might worry about how they'll be treated if they are "found out."  No one wants to be perceived as different, or "weird."  I don't think people always intend for others to feel  stigmatized, but I do think that people don't put themselves in other people's shoes enough.  I believe that many are so uncomfortable with problems, they want to keep their distance.  This distance makes the ones with the problems feel separate, bad, stigmatized.

It might seem strange, but our cat Maisy makes me think about stigma.  She has been a part of our family for about five months now, and is strong and healthy.  She is a purring machine, adorable, loving and fun.  A striking Tortie cat, she has now doubled her once thin frame, and is getting acquainted with having a body.  I watch as she moves, reminding me of a baby or toddler, rolling over and back again on the floor.  I wonder what she experienced in her stray life, and how it affected her to be so malnourished. She alternates between chasing her tail and cleaning it, sometimes staring at a wall.  She still hates jumping gates (we have a few to keep Cosmo, our dog out of some areas).  Despite numerous times coaxing her, she remains fearful of going through the pet door in the basement door.  Maisy somehow is never around when the front door opens, and runs away in fear when the back door opens.  I wonder if any of this is why she was a stray in the first place.  

I know cats, and people, can be quirky.  But I have a hunch if Maisy was a human, she'd have some kind of diagnosis.  If a diagnosis is treated successfully, people can lead fairly normal lives.  I also know that lots of people have undiagnosed or misdiagnosed problems.  Suppose there is a diagnosis, but treatment isn't available, or not completely successful?   If  Maisy was one of those people, what would her life be like?  Would people think she looks fine/normal, but get uncomfortable interacting with her, and judge her?  People with problems experience interactions that make them feel bad about themselves.  And there doesn't have to be a conversation; I think it's the vibe of discomfort, the look on someone's face that can sting the most.  Disorders, whether invisible or not, are generally not contagious, but I think there's a sense of "that could be me," or "I'm glad that's not me."  Sadly, this means people keep their distance, and those with disorders feel disconnected, isolated. 

On the other side of "looking fine," I think people with invisible disorders worry about misperceptions.  Dizziness from a vestibular disorder may make someone look drunk, or nauseous.  Balance Disorders, which involve more than the vestibular system (inner ear), can also create embarrassing situations.  In either case, someone may be holding on to something, or leaning against a wall.  They might be using so much energy to function that having a conversation is limited - it takes too much energy.  Something as simple as sitting with people in a room may be a lot of work.  Walking unassisted may take effort, or dealing with elevators or escalators, just to name a few possibilities.  I've been in situations where I felt awkward, felt like I needed to be careful, put effort into compensating so that nothing appeared to be wrong.  If someone's worried about how other people will react to their behavior, and they're not confident they can handle various pieces of a situation, they may just avoid doing things altogether.  Obviously this is very isolating, which feels lousy. 

I'm not happy that I have invisible disorders; sometimes I feel as if I'm now part of an odd sort of club.  In this club, there are some people who are too consumed with whatever they're dealing with to think much about others.  I've been there and I understand that.   Whether they have the energy to extend themselves to others or not, most members of this club are fairly consistently compassionate towards others.  Unfortunately, it seems to be human nature that unless you experience something, it's hard to really know how something feels.  Even if I don't have the same problem as someone else, I understand health struggles.  But I wonder if people don't stop and think enough, use their imaginations.  Because of my invisible disorders, I probably spend more time than average not doing something.  Sitting and eating without reading, listening to whatever, or watching something on a screen.  Granted, I'd like to be able to do some of or more of those things.  But I wonder how often people just sit and reflect.  I could say  it would be a good thing if everyone had a close relationship with someone who has an invisible challenge, but the truth is, most people probably do.  They just don't know that they do. 


Of course, the club isn't real, it's rather my sense of how people are divided.  You don't have to have a problem, be a part of this imagined club of mine, to expose yourself to experiences so that you know what it's like on the "other side." How hard is it, really, to stop and think, take in a person, move past the moment of noticing whatever makes you uncomfortable?  Is it really so difficult to be open to learning from whomever you encounter, just as you would from whatever experiences you have?  Some people may be rolling their eyes, and saying "that sounds so cliche."  That I'm on a "soapbox" talking about how knowing people coping with problems can make you a better person.  I'd say to them that I don't care if they're rolling their eyes, if they're also thinking a bit more, just for a moment, about how they treat other people.  The girls and I have all commented that Maisy is lucky she found us, lucky she found a family that doesn't mind the fact that she's different.  And I wonder how many families, how many people are accepting of different, of those who don't fit in perfectly.

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