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January 6th, 2019 neurological change - it IS possible

Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for November 2014

November 24th 2014 Noticing what's positive

Living with my invisible disorders is difficult.  My psychologist, Dr. Glad, tells me that effort counts, and I often think about that.  My daughter Cara remarked recently, watching me get set up for something, that "it must be so much work for you (me)" (not an exact quote).  There's definitely an element of work, of effort, that I deal with.   I use hi tech software and hardware, to help me use my computer, and to listen to audio books.  I've talked about my therapies, how I'm always working to make progress.   But in the meantime, I'm living my life right now, which means coping with my challenges.  All of which is why noticing, and finding, the good in my life is so important. To me noticing good things doesn't mean only special things.  Life is full of ordinary regular stuff, and I don't think that's bad.  I remember when unloading the dishwasher, or hanging up clothing from the dryer was a challenge.   Actually doing regular chores, projects, or whatever, can be a reminder that you can DO regular activities. 

I wish I didn't have to think as much as I do about the structure of my days, and weeks, and sometimes I get very frustrated that I need to.  But when I think about how I spend my time, I also try to remember to ask myself "is there enough good stuff?".  Of course, good things can vary quite a bit from person to person.  I don't just mean positive things that are big, obvious, and easy to notice.   I also mean the little day-to-day small pieces that add up.  I have a progress log that I started a little over two years ago.  I put down the big successes, like that I was able to attend the high school performance of The Importance of Being Earnest, or visit a college with my daughter.  But I also try to put down small things, like not needing as much of a break after dinner, or that looking from my personal calendar to the one on the kitchen wall is easier.  Does that mean that I can do these things symptom free?  No, it doesn't.  But that's OK.  If there is ANY improvement, it's still positive, and I get to put it on my progress log.

A Facebook friend asked me not long ago what I used for an anti-depressant, and I said "music!".  Music is huge for me, a major positive in my life.  My favorite quote about music is "music is the sound that feelings make."  Playing my flute allows me to express myself, and I make sure to play every day.   It's always been meaningful, but is especially so now because I remember when I couldn't play.  Sometimes I play a little bit a second or third time, and just listen to the notes that float out of my flute.  Ann asked me if I need a lot of breath to play.  I do, but it's different than when I do mindful breathing to relax.  When I play, I think about how to breathe so that I support the tone so that the note speaks the way I want.  I want to be aware of my breathing, but I'm focusing on making music, whether it's something from memory, or just playing whatever notes or rhythm patterns fit my mood.  

I also listen to music.  I listen during the day, but I make a particular point of listening at night.  If I forget, and am too tired to listen when I remember, I feel like something is missing.  Music really is food for the soul.  I created a YouTube channel when I was giving private flute lessons, which was fun - making the videos as well as teaching.  I don't know if I'll ever go back to teaching, but I'm pretty sure I'll record myself again and put it out there for whomever to hear, just for fun.  Music is wonderful for private times, but also wonderful to share.  So, although I'm not gearing up for something big like a performance or to attend a concert, clearly music counts in the positive vibes column.

Writing is definitely another positive element in my life.  I first put bits of my writing online a few years ago when I wrote about beginning to play my flute again.  I love the nuances of language, how words can have slightly different meanings, add texture and depth, carry weight, and power.  When my writing stirs up difficult emotions, it's still ultimately a good thing for me, sometimes even cathartic.  Writing is an amazing process that helps me put the puzzle together, think things through, figure things out.  I really need to write, to let the words tumble out.  As I said in a previous blog, I can't write a huge amount at a time, but I piece it all together, bit by bit, layer by layer.

People and relationships have always been important to me, so anything - in person or on the computer - that connects me to people I care about is good.  Of course spending time with my family is a positive.  Ron is generally quieter than me, so I especially enjoy having conversations with him and seeing him laugh.  I'm grateful that I truly enjoy being with my daughters.  They've both got a great sense of humor and make me laugh.  Due to visual problems, there was a time when I couldn't use Facebook at all.  I still have limitations, but being able to connect with friends on Facebook, both to communicate, and to share news and other info is definitely a positive.  I have days when Facebook is my only social life beyond my family.  Many of the people I'm connected to are people who I met at some point in my life, and I really am grateful for them.  It's also wonderful to be connected to people I never would have come across without Facebook.    

Dr. Glad always says, and it's so true, that we all have limitations and challenges.  And I need to remind myself of, and focus on what I CAN do, and when I succeed.  It's impossible to feel good about myself if I focus on my limitations, what I can't currently do.  I'll admit that I felt blindsided at first by my invisible disorders, and felt like "aren't I too young for something like this?".  Fifty - how old I was when I got sick - seemed too young.  But I got what I got, it happened when it happened and I try very hard not to compare myself to others.  I try instead, to pay attention, to really notice anything I can count as positive.


NOTE:  For anyone who wants to take a look/listen, here's a link to my YouTube Channel - all recordings done three - four years ago.

https://www.youtube.com/user/cool09VIDeos1

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November 17th 2014 Persistence, finding what works

"I want to know what's wrong with me."
"I want to feel better."
"I want to have a life again." 
Many people can relate to all three of these statements.  I see these, or variations of them, posted a lot on online vestibular support groups.  There are serious medical problems for which people end up fighting for their lives. Clearly, that's a big deal.  There are also lots of things that can be wrong with you but are manageable and don't really interfere with daily life.  I've had reactive hypoglycemia for over 30 years.  But properly managed, my RH doesn't make me feel bad most of the time.  Being dizzy, a symptom that most vestibular disorders cause, is different.  When I first got sick, it wasn't  just unpleasant, it was really scary.  I also felt really physically  sick.  Thankfully the scary times, the times when I'm dizzy, (which is worse I think than disequilibrium; feeling off balance), are brief and far less frequent now.  Feeling better to me means improving, which I am now doing.  But I know that dizziness keeps people from doing stuff, even very basic stuff.  It can seriously mess up your life. 

When I first got sick, I sometimes heard friends say "don't give up!"  I would now also say "don't give up on yourself."  When you are miserable and scared, it's very hard to keep going, keep trying to get answers.  It can get horribly frustrating, depressing, and just plain exhausting.  I now truly understand the meaning of the word persistence.  Until I got sick three years ago, never in my life had I gone to so many doctors!  And yet I wasn't getting answers.  I had to tell myself "OK, I'll go to this doctor," "I'll do this test," "I'll have this exam," "I'll go through this if it means I'll get some answers." To say that going through all this was difficult is an understatement, but I did it.  Finding the right doctor, to get an accurate diagnosis is so incredibly important. And I think it's what you have to do until you get answers. Sometimes you have to figure out what ISN'T the answer, in order to find out what IS the answer.  Finding out what's wrong doesn't instantly solve problems, but it's SO much better than asking over and over and over again "what's WRONG with me?".  I talk at more length about my journey to my diagnoses in other posts (see for example "Medically Significant"). 

Finding the right treatment, what works for you, is also really important.  In the early months of my illness, I was doing Vestibular Rehab Therapy - VRT - with a Physical Therapist (PT).  I presume that some people improve doing VRT with PTs, but I did not.  I went to my PT regularly.  I wanted the VRT to work.  PTs can do some basic testing, for example for BPPV, but are not, in my opinion, qualified to make more complicated diagnoses.   I did not have all my diagnoses yet, and I think a lot of PTs are very used to doing VRT as a standard therapy for vertigo.  She also kept telling me my BPPV was gone, even though I had a hunch later confirmed by a neurologist, that it wasn't.  Most importantly, I was not seeing any improvement in my life from doing the VRT.  VRT is not the only option available.  I stopped working with the PT when I got connected up with Joyce, an Occupational Therapist whose specialty is Feldenkrais therapy, which is brain re-training.   

My vision therapy is supervised by a developmental optometrist.  A developmental optometrist does eye exams to check for physical eye health, which means they do standard eye exams like dilation, and checking your eye pressure.  They also check that your eyes are functioning properly in a variety of ways.   Both of my daughters have been checked by our developmental optometrist, Dr. Margolis.  If there is a problem, some form of vision therapy is often recommended.  For grownups, like Feldenkrais, this is also a brain re-training issue.  I don't completely understand the complex system of vision, or how the therapy works, and I don't try.  I leave that job to my doctor and therapist.  I do try to answer my daughters' questions when they arise, and sometimes I tell them "I don't know."

Finding the right people to work with is important, but then the work to improve begins.  I wrote about being understood, and this is important not just for family members who live with me, but also those who work with me.  Improving, for me at least, is a work in progress.  I speak regularly with my psychologist, which is very helpful.  I'm always communicating with my therapists, Ann and Joyce.  I need to communicate well, describe things  to each of them.  I think having invisible disorders that affect my life means that people I work with need to have some info about my daily existence, because they are working with me as a whole person, not just my disorders.

Looking back, given how sick I was, I know I did the best I could to get what I needed.  I didn't give up on my search for answers, both for my diagnoses and for treatment with the right skilled, caring professionals.  I hope that no one gives up on their journey to find answers, to get what they need because it's so important.  I remember during a visit with my ENT, Dr. Ziffra, he told me in answer to one of my many questions (note: not verbatim): 

"That's beyond my area of expertise.  The whole balance system is very complicated.  It involves the ears, eyes and a part of the brain.  It's not uncommon for an elderly person to have a problem with balance, so I strongly recommend that you get to the bottom of this now." 

I think it's wonderful when a doctor says "that's beyond my area of expertise," because they are admitting they don't know.  When a doctor says this, I think you can trust them when they tell you what they DO know.  As frustrated as I was, I took his words to heart, and his words were one more little piece that helped me keep going until I got answers.  So now I'm passing these words on... keep searching until you really have the answers you need, and feel like you will be able, little bit by little bit, to improve.


NOTE - It would be great if other people who have had success with treatments other than VRT could share - Thanks....

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November 13th 2014 - Writing, and Understanding

Cara asked me recently why I was writing a blog.  I told her about a conversation I'd had with Leena when we came up with the name.  I told her how Leena wrote key words as we talked, and that I plan to keep the note because it's a reminder to me of that brainstorming conversation.  In the end, there are really two main reasons.  I love to write despite the challenges it now presents.  Actually, I need to write, just like I need to have music in my life.  Whether I'm writing about social issues I care about, or music, or an audio book that moves me.   The other reason is that I want to add my voice to those already working to raise awareness and understanding about invisible disorders.  I believe very strongly that each person can make a difference.  I don't ever want to see myself become silent, thinking "why bother, it doesn't matter.  I'm only one person, who's going to listen?"  There's always at least one person who will listen.

Writing is really something that has always been a part of my life, although not in a public way.   I've been writing ever since I was a teenager.  A lot of it was private journaling, which I still do, and I also wrote the occasional short story or poem.  Some students hate writing papers, but that was never me.   I did loads of writing when I was a student, and back then it was, of course, actual writing or typing on paper.  I still remember typing my Masters Degree thesis.  Writing, or rather keyboarding is challenging for me now, though not because I need ideas or inspiration. It takes time for me to write a blog because of how I need to pace myself.  But for the very reasons that writing is challenging for me, it's also good for me.  And I'm fascinated with the power of writing, both for what it does for me to put thoughts, ideas and emotions into words on paper (or computer), and with the ability to reach people. 

Vision problems are fairly common for people with vestibular disorders, since vision is a key element in the whole system of balance.  My vision problems are not particularly common, based on information I've taken in about people with vestibular disorders.  Vision disorder is a very broad term.  Everyone knows what the word vision means, though many don't know how complex the whole visual system is.  My problems, as I've mentioned in other blogs, have nothing to do with eye health.  My eyes are quite healthy.  I don't wear glasses, or walk with a cane, or in any way LOOK as if I have any vision problems.  If you heard me ask Ron to read something to me, or saw me listening to text on the computer through my headphones, you might wonder what was going on.  There are many ways I am challenged throughout the day, despite the fact that I can literally see quite clearly.

My vestibular disorder, Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines.  When people think of migraines, they think of someone in pain, and that part is true.  But migraines, which vary in severity, can also cause vertigo or disequilibrium, which is why I don't like to just say I have a migraine condition.  The term vestibular disorder is broad, because MAV is only one of many vestibular disorders, but more accurate since vestibular (which refers to the inner ear) means my equilibrium is affected.  It's still not a perfect term, since balance is really a whole system, not solely dependent on the inner ear.  But the words vestibular disorder are definitely an improvement.  There are many names of disorders and conditions that are now commonly used and familiar, and I want vestibular disorder to be like that.  There are situations when it's appropriate and necessary to tell someone I have a vestibular disorder, and I don't want it to seem like I'm speaking in a foreign language. 

I believe people are often afraid of being judged or stigmatized if they tell someone their medical problem.  That those with disorders will be treated differently, as if they've somehow BECOME their disorder.  No one IS their disorder, regardless of the problem.   You are still a person with a personality.  Using the phrase "I have health issues" is not, in my opinion, an improvement.  To me, this is a polite phrase that people use, often when they are worried about saying what is really going on, or because they don't think they will be understood. There are so many people living with problems no one can see, and people don't think about that often enough, instead judging others, presuming they know everything they need to know about a situation or person. I feel very strongly that people need to stop and think, realize there often is more to the story than meets the eye, and treat each other with compassion and understanding.   Someone might see me at an event, and not have the slightest idea that anything is wrong.  In fact, I need to get my bearings regarding the size of the room, the number of people, the noise level, the lighting, etc.  I'm fortunate that the congregation I belong to is a wonderful, supportive community.  Even so, no one really understands what it's like for me on a day to day basis living with vestibular and vision disorders.  So my writing gives glimpses or snapshots of my experiences. Those snapshots are important windows into my life, as I live with invisible disorders. 

Sharing my experiences can be difficult, or make me uncomfortable, but that's not a bad thing.  Sharing my writing makes my medical challenges more real to me because I look at and think about my situation in a different way. This process, and helping others with invisible disorders, is all good.  I don't personally believe that my vision or vestibular disorders happened for a reason, or were meant to be.  I DO believe that learning and growing from whatever I have to deal with is really important, and a much better expenditure of my energy than anger or self-pity. To say that what I've been going through, and working with hasn't changed me, had an impact on me and my life would be ridiculous.  Of course it has, some good and some bad.  But it's still NOT who I am, not my identity














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November 5th 2014 - Welcome!

Welcome to my blog! Please take a look at "About Me"....a new blog post coming soon....

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Sept 8th 2014 - Meet Maisy

Meet Maisy
She's healthy enough now that I'm ready to introduce the newest member of the Schwartz household - our kitty Maisy.  We adopted her over the summer from Orphans of the Storm - or more accurately she adopted us.  Leena and Ron were in the cat room, Maisy found Leena, Leena picked her up and Maisy stayed contentedly in Leena's arms.  Cara and I were not in the cat room, so I spoke to Ron by phone, who told me about Leena and the as yet unnamed kitty in Leena's arms.
We requested some private time with Maisy, who was curious and very sweet, rubbing against us and walking from one lap to another.  She's petite - full weight will probably be about nine pounds - and the girls and I call her our tiger baby because she is golden brown, black, with a bit of grayish white (not a traditional calico look), and has black stripes on her long front legs.   She looks as unique as her personality.
She was VERY thin when we got her - at her lowest weight when she was sick with a respiratory infection, she was 4 1/2 pounds.  At her worst when she had no interest in eating or drinking, Leena and I spent 1 1/2 days hydrating her with a dropper.  But with lots of TLC, our wonderful vet Dr. Key of Rivertrails, and the right meds, she is now a healthy little girl - about 1 1/2 years old - who is building muscle and loves to play!  She chases her tail, is forever hunting imaginary enemies and loves to chase a ball.  Cosmo (our dog) was very good about welcoming his new little sister, and would be thrilled if she played with him...we'll see.   Maisy is now an adorable, quirky member of our family.

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June 5th 2014 - Care During Life and Illness

Thoughts on care during life and illness - because of a cat.

It's been 24 hours since I said goodbye to Goldy - I keep thinking I should check on him  and then remember.  The thing is that for the last four months - really the last 14 years - he was a living thing I took care of.  When he got sick I was determined not to have to look back as I've done with my childhood cat Poppy and say "it could have been so different." 
My childhood cat Poppyseed died when I was ten, and I had always promised myself - though it ended up taking 30 years - that I'd get another cat.  There will be another one later this summer, but not a replacement.  Living beings you love don't get replaced.
I gave Goldy a steroid wrapped into a pill pocket twice a day, and an anti nausea pill.  We developed new routines, and then there was the tuna fish.  Every time there was a change in his behavior, I thought about what to do. 
Leena commented that she knew the difference between the jingle of his tags and our dogs'.  I knew exactly what she meant, and find myself listening for the jingle, and it's strange to only hear one.  He was a part of our household - the girls don't remember our house - until now - without a cat because they were little when we got him.
I thought a lot about life and death while Goldy was sick. And about the ending of a life.  Goldy hung on much longer than we thought he would, and in the end I knew that if we'd waited until he didn't seem like Goldy anymore - his personality gone - we'd have waited too long.  The ending was painful to see - but I knew when we couldn't give him his pain med or anti nausea med anymore, combined with not eating and or the use of his back legs, it was time.  I knew four months ago that he was terminally ill, but final goodbyes are never easy.
The vet was wonderful - we were instantly ushered into a private room, and our vet gave us time in private as well as waiting discreetly in the room.   We waited after she gave him the sedative, and then when she checked and his head was sleepy on the table it was time.  Time to really say goodbye.  I didn't want to see him no longer breathing.  I didn't want to remember him that way.
I think that in the end euthanasia is a peaceful, humane way to let go of what you love.  I think humans shouldn't be so afraid of when our loved ones get sick. I've thought a lot about what the ending will eventually be like when my father - who's lived with lymphatic leukemia for nearly 20 years - dies.  And I also think that sometimes ending the life of a human, rather than waiting for the person's body to finally give up the fight for survival, would be the kinder more loving thing to do.

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October 27th 2014 - On the Topic of School Shootings

When I saw the headline "Breaking News: School Shooting," I thought "oh no, not again, not another one." I haven't seen any stories explaining how the student was in possession of a gun, or how he was able to bring it to school. I find myself wondering how difficult, or not, it really is for a student anywhere to bring a gun to school. That worries me. I'm also troubled by the thought that I don't think this will be the last shooting. I wish I didn't feel that way, but I do.
I can hear people saying but what about "the right to bear arms," but I feel like that comes from a very different world. As Leena mentioned her Junior year of high school, when it was discussed in her Social Studies class, the weaponry available now is pretty astounding. Even if that wasn't the issue with this particular tragedy, guns in the hands of anyone who isn't trained to use a gun (I'm thinking, for example, of the military and police officers) scares me. And I'm not getting into the issue of the accidents that happen, because this wasn't an accident. School shootings are never accidents. I told Ron I was more concerned about guns in school than Ebola, which I think we have a miniscule chance of contracting. So what I wonder in the end is what will it take, how many kids will die before there are changes?
I want to make it clear - whatever pushed the student to do what he did, including then killing himself is horrible. Everyone says people kill people, not guns...but horribly troubled people get access to guns...

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October 24th 2014 - Getting a Haircut

I've written about going to special events, but I decided to share today about something we all do - get our hair cut. This is one of those ordinary events that now presents some challenges. I've been going to the same place, The Right Bank Hair Salon, for many years, though the location has changed due to development in the downtown of Deerfield. I've had my hair cut by the same person, Larry, also for many years. I'm pretty sure he's still one of the owners. He's a really good guy. The Right Bank is very low key, and not crazy expensive like some places. It's not a huge place, which is nice. They now share space with a nail business (All Polished Up), which I was initially concerned about, but it hasn't been a problem for me.
The first issue I noticed was that they have ceiling fans. I cannot deal with the motion of fans, and Larry accommodates me and turns them off while I'm there. I used to ask him to turn off the music, but I no longer do that. I try not to ask for accommodations unless I really need to - sometimes this gets complicated, but that's an issue for another blog. I'm improved enough now to handle some music in the background. His station is not, thankfully, right next to the source of the music. I also make sure to go in the morning since mornings are better for me, and to pick mornings that are not super busy. A lot of people means more activity and more conversations in the background, so low traffic mornings are good.
Fortunately for me, his station is not by the window, so I don't see any car movement in my peripheral vision. So I've never had to have a conversation about that. I have once or twice had to have someone else cut my hair if he was unexpectedly gone, and had to deal with the window. That's how I figured out that no window is better. The first thing Larry does is lock his chair. I don't want to have to worry about unexpected movement, or spinning (even slowly) and this just means he has to walk around me. I also never get a shampoo there. I've never liked that, and I especially don't want to deal with tipping my head back, etc. now. I sometimes find myself watching him doing the actual cutting, but I try to look at other things. Focusing my eyes on the actual cutting isn't something I want to put my visual energy towards. I trust Larry, and he always has me run a comb through my hair, check how it feels, and asks if the bangs are a good length. Sometimes he'll have me stand up and stand behind the chair. Whenever he asks me to move my head, he'll say something like "as much as you can," which I really appreciate. He doesn't completely understand my situation, but he understands I have a problem, and doesn't want my haircut to be stressful.
When it comes time to pay, I stand behind the counter, near where he sits. I've always done this and it just feels better. I give him a signed check which he completes, and then he shows me what he's written. Most of the time Ron transports me, so he's usually waiting in a chair for me, or about to pick me up. Occasionally I take a taxi. I'm grateful for the Deerfield Village coupons I'm eligible for, because it makes taking a taxi for local stuff very inexpensive. The fact that Larry is a caring person, and genuinely doesn't seem to mind making a few accommodations without a fuss is wonderful. Getting my hair cut has gotten a little bit easier, partly because I handle it better, and partly because I've learned what elements are difficult and how to deal with them. I think that's a pretty good rule of thumb for me in general, because I don't think a haircut, beyond the fact that it's an outing, needs to be a major challenge. I want to feel less shaggy, and a bit more put together, when I leave.

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October 21st 2014 - Thoughts after The Invisible Bridge

I listened to The Invisible Bridge...all 30 hours of it....it's not a book to hurry through. I'm kind of glad I listened to it, rather than reading it, because the audio made the story come to life a bit more. It's a dense book, full of emotive lengthy descriptions, but in the end I think that's what gives it texture, brings it to life. It's fiction but based on the author Julie Orringer's family story - those who survived - WWII. She did a great deal of careful research, and the book was seven years in the making.
I've read other books about the Holocaust. But this one, which mainly takes place in Hungary, covers the entire historical span, from the lead up all the way to the end, and then years later to a teenage granddaughter in the states who wants to know the full story of her past. I suspect telling this story was difficult but important to do for Orringer. Some of the story is fiction, but it's very reality based, and I found once the war started, it was really compelling. I got a very real sense of how the people were trying to grasp, and not believing what was happening, as history was unfolding around them. Life in the Hungarian Labor Camps in all its' horrors. But the descriptions are not just of places and events, but emotional reactions. There's one scene in which a man is going to commit suicide, but chooses not to, because then the Nazis would have killed his whole family. The brutality shown one young man who was Jewish AND homosexual. There's a sense of disbelief in the beginning, followed by not believing that life can move on. A tremendous fragility, utter unpredictability.
There is more than one scene describing the intense, complete and necessary focus on survival. The need to shut out everything except how to survive. I am truly in awe of those who managed to survive. I found myself very moved not just by the utter lack of compassion and humanity to those who are different (in this case because of their religion), but also the occasional acts of tremendous humanity, the ones who tried truly bravely to stand up to what they understood to be horribly wrong. I couldn't help thinking, when I had finished the book, that decades later we can still be so lacking in tolerance and understanding, so wary of differences. I think differences make us uncomfortable, and so we shy away. Why not be open minded, and get to know others as long as those differences won't do us personal harm? We are all - regardless of religion, race, sexual orientation, etc. - human beings in the end.

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October 19th 2014 - Medically Significant

My least favorite medical term I've heard over the last few years is "medically significant." This term, and what is functional played a part in the journey I took to get to my diagnoses. My experience of how some doctors handle patients with difficult to diagnose problems also played a part. 

Medically significant is a term doctors like to use, at least some of the ones I've seen. As I understand it, it means that you have a problem that warrants medical attention. But sometimes tests or exams don't reveal a need for some sort of fix that the doctor can provide. Sometimes the problem is what I, and my therapists, would call functional. In my experience, doctors need to be better about recognizing when a patient has a problem that needs help that they cannot provide. Or that a patient needs more testing to figure out what's wrong. Technically, I don't have medically significant problems with my eyes. There's nothing wrong. This fact still astounds me - it's just absurd! But it's true, according to various measurements that a doctor can achieve by performing tests on my eyes. 

Correctly diagnosing a problem can be very difficult, and this is definitely the case with vestibular disorders. So what was my route to my combo diagnosis? It started with a neurologist. He did correctly diagnose BPPV. The problem was that when my MRI a month later was normal, he didn't say "OK, clearly you're not OK. So now what do we do?" I wasn't in a position at that point, and hadn't learned nearly enough, to advocate for myself. So I went from doctor to doctor, being told over and over "BPPV." Finally, I went to an ear specialist - I only saw him once - who said that I might have what he called vertiginous migraines. I wasn't sure what he meant, but I do remember having this light bulb "a hah!" feeling. He said he didn't feel qualified to make a diagnosis, so he referred me (yes, finally a referral!) to a dizziness specialist. 

I ended up at the Chicago Dizziness Clinic in July, ten months after first getting sick. I had had some tests during the winter, but not a complete battery, so I had to do some more. The neurologist explained that beyond symptoms, there was no test for MAV (what the ear doctor had called vertiginous migraines), which is what he thought was the problem in addition to BPPV. He said he had to rule out a bunch of other stuff in order to confirm the diagnosis. So the good news was that I did end up with the diagnosis of MAV, but the bad news was a) not being told anything about a migraine diet, and c) not being told there might still be something else going on, in my case with my vision. I had the distinct feeling my eyes were over reacting during some of the tests. I figured out about the migraine diet on my own with help from various sources, including VEDA. I also figured out by the winter time - now a year and a half AFTER initially getting sick, and having started therapy with Joyce the previous May - that I definitely had something going on with vision. Something that was beyond diet, or help from Joyce. It's also worth noting that I did NOT get to Joyce because of a doctor, but rather on the recommendation of a friend.

I think one reason doctors don't always make referrals is because they, in my experience, don't want to admit when they don't know something. It's true that I want doctors I see to have answers I don't. I don't expect non-medical people I interact with to understand my situation, but I do have an expectation that doctors will be informed about the basics. It's strange to be in the position of needing to inform THEM. I've found therapists tend to be better about this. Certainly Joyce fits in this category. When I first saw her I said I wondered if there was something going on with my eyes, but then we moved into concentrating on what she could do for me. By the winter - about eight or nine months after I'd started with her - I brought up my vision again. By then she thought I had progressed enough to check this out, and I ended up in Dr. Margolis' office. 

I went through a variety of tests, and then had a consultation with Dr. Margolis. I finally had found someone who understood what I was experiencing. I no longer felt like I was going nuts. Going through the tests was difficult, but getting a diagnosis, and being told he could help me was worth it. I still feel like my vision problems are a bit strange, but when I'm there, even though the therapy is difficult, I also feel understood. I now know that I must have had Convergence Insufficiency (CI) as a child. There is a genetic component and both daughters have it - Leena needed therapy. I don't know back in the 60's if there was any kind of vision therapy. I've never done the research to find out. I know that vision is very complex, and my problems are really more than the CI. I'm very fortunate that I ended up with Joyce and that she sent me to Dr. Margolis, who has skilled therapists who are also wonderful people. My vision problem is not, technically, a vestibular disorder since that refers to problems in the inner ear. But vision is an integral part of balance. I've been told that I rely too heavily on my vision because of my balance problems, and this in turn is a problem since I have a vision disorder.

I don't know if my situation would have been different if I hadn't had such a circuitous route to the final piece of my diagnosis, or if I'd found out about my migraine condition earlier in the process. I'll never know. I do know that doctors need to be willing to help patients regarding conditions that may not be "medically significant" but ARE what I call functionally significant. Being functional in the good sense of the word matters a lot. Bodies are amazing, complicated systems and doctors can't know everything so they need to be open to sending patients elsewhere. Even in the best of circumstances, pinning down a diagnosis can be difficult, and once diagnosed the problem may be difficult to deal with. Knowing what's wrong can give some peace of mind. I know when I do something and I feel bad, knowing WHY I don't feel good takes away some of the anxiety. I can figure out ways to cope, and utilize my support system. I couldn't do that when I didn't know what was wrong.

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October 17th 2014 - My Participation in Kol Hadash

I went to the Yom Kippur morning service this past weekend, and also attended a Youth Education Committee (YEC) meeting for the Sunday School. My take away emotions are mixed. I feel very fortunate to belong to a wonderful congregational community led by Rabbi Adam. I'm also grateful that I can still be involved by being a member of the YEC. But I'm also reminded of difficulties I now deal with.
Before the Yom Kippur Service started, I went into the Fellowship Hall to have my snack, where there were a number of choir members waiting, and socializing. It's a very good group of volunteer singers I used to be a part of and I'm glad my daughters participate. I'm sad that I can no longer sing in the choir. Standing to perform, reading music while also looking at the director and dealing with the whole sensory experience of singing would, I know, be too much for me on top of the service. So I enjoy the music from the audience. An audience is, after all, necessary for performers. While I ate my snack, a few people came up and spoke briefly with me. One friend commented that she's been learning from my posts. That she's taking the time to read what I write, and that she's learning makes me feel very good. All of the interactions I have with other congregants, whether it's a conversation or just a greeting, help to make me feel connected. This is important for everyone, but I particularly value this since my social life is limited.
The sanctuary where the service is held is a lovely space, but it is a large space. I always feel a bit overwhelmed when I first go in. There's a different feeling to it when it is filled with people, or when it's a smaller service. Either way, I take it in, and get my bearings. I listened to the music, and enjoyed watching my daughters. Cara, having sung the previous year, was able to participate for Yom Kippur and looked happy to be with the choir. Her sister Leena looked happy as well, and I feel good that this is a piece of Kol Hadash that my daughters can be a part of, even though I am now in the audience. Ellen, her first year replacing Sarah, did a wonderful job pulling them together. I was sad to hear from Ron when he got home from the afternoon service that I had missed Sarah keeping up the tradition of singing the Memorial Service with Ellen. Hopefully I'll have the chance to hear Sarah some other time this year.
I find the services, including listening to Rabbi Adam, meaningful. It's a lot of thinking, which is good, but also a lot to process, so I felt mentally tired by the end, but I enjoyed it. After the service I greeted a few people before we left. We know a good number of people in the congregation, as we have been members nearly as long as Kol Hadash has been around, having joined only one year after other members founded the congregation. This is the 10th year that Rabbi Adam has been with us, and I'm grateful that I'll be able to attend the special Shabbat on October 10th. I checked that there wouldn't be any elements to the service that would be too much for me. 
I thought a lot about the planning I need to do to be involved, when I was at the YEC meeting on Sunday. I've been on the committee for a long time, and I'm grateful that it's something in which I can still participate. I'm one of two alum on the committee and my daughters are both aides this year, so I want to be a voting member, and was encouraged by the Sunday School Director, Dawn, as well as one of the co-chairs, Rachel to stay on the committee. So I did. Sometimes absorbing the info throughout a meeting, especially if I want to speak up about something, actually feel I'm contributing, can be a challenge, but I do my best. I'm working harder, expending more effort than I used to have to, in a variety of ways. This is a pretty common problem for people with vestibular disorders, so I know I'm not alone in this, but it can get pretty frustrating. But I think that making myself think is still good for me in the long run.
Sometimes being at YEC meetings leaves me with mixed emotions. There's discussion about programs I no longer participate in, because my daughters have aged out, and like any parent I have mixed feelings about that. There's also discussion about social stuff, events or activities which often present challenges for me. It's frustrating, and realistically there are events that simply don't work for me, but then I have to ask myself "is there a way for me to do this, to participate?" I usually don't know the answer right away. And inevitably I can't participate in everything I'd like to, and I feel sadness about that. However, in the end, I still feel like being on the committee is better than if I'd stopped. Many things I do are a mixed bag for me now, but that means that there is good, as well as something that reminds me of what I can't do now, or what is difficult for me. In order to keep working with and through my problems, I believe I have to keep doing, and dealing with the challenges, in order to also have the good.

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October 12th 2014 - Practice and Rehab

When I was playing my flute recently, I found myself comparing "practice" with rehab." Here's a couple dictionary definitions:
Practice: 
repeated performance or systematic exercise for the purpose of acquiring skill or proficiency:
rehabilitation: to restore to a condition of good health, ability to work, or the like.
I looked up the dictionary definitions of these words because I was curious. Curious if real life understanding of these words matches the dictionary. When you teach someone to play an instrument, you could be teaching a beginner, which means you are giving them brand new skills. They practice in order to learn them, and to be able to acquire more advanced skills. Or you could be teaching someone who is returning to an instrument. When I got back to playing about a year and a half ago, I was in that position, and was my own teacher. Playing still feels natural to me, there is a lot that came back and still floats up out of my memory, but it also feels different. I'm trying not to fall back into old bad habits, and some of this is conscious. Some of it is less so, and I've brought my flute occasionally to Feldenkrais so that Joyce can work with me.
So that brings me to rehab, but first some background. I had already worked with a physical therapist on hand problems when I got vertigo. It turned out she also did what's called vestibular rehab therapy (VRT), so I began working with her about two months after getting sick. For some people, this more standard (for lack of a better term) therapy works, but after about five or six months, I wasn't seeing any progress. I think there were two problems. One was that I only had a partial diagnosis - the BPPV I've mentioned before. I had a feeling there was more going on, but had no idea what, and wasn't getting any answers. Ultimately I got the diagnoses of MAV and visions disorders including BCI. Getting the right treatments can only happen when you get the right diagnosis. But the other problem, it turned out, was that VRT just wasn't right for me. Even WITH a correct diagnosis, you still have to find the right treatment. Feldenkrais was and continues to be the right kind of rehab for me. 
My rehab isn't just about the therapy I do. It's also about sensory exposure, which is one of the reasons I attend Kol Hadash events. I attend for other reasons as well, obviously, but going to a service, like Rabbi Adam's 10th Anniversary celebration last Friday, or the Sukkot service on Sunday are positive ways (as opposed to a doctor's appointment) that I can challenge myself. Whether it's listening to music, socializing with one or more friends, experiencing the difference between being outside vs inside, it's all exposure. Any time I do something that isn't part of my daily routine, I think it counts. It doesn't need to be a major event. Actually, if I tried to constantly expose myself to major stuff, I would pay the price. I've been told over and over that part of rehab is about little stuff that adds up over time, so it's all worth it. It's always, to pardon the pun, about balance.
Anyway, my rehab is not about practice. Before I got sick three years ago, I had as I said, done rehab. But it was worlds away from what I'm doing now. What I now understand much better is the many different kinds of rehab, depending on the problem. Going back to the definitions, I think the definition for "practice" is fairly accurate, even if you are a "return" student. I think that the definition for rehab is much too simplistic, but I also think that there cannot be a dictionary definition of rehab that is accurate. Rehab is a complicated process in the vestibular world. I don't mean because of tools that are used; my rehab is not a high tech business. It's complicated because of the process of the layers of learning that happen over time. It's complicated because there needs to be understanding on the part of Dr. Margolis, the Developmental Optometrist who supervises Ann, and Ann and Joyce (Feldenkrais), the therapists working with me. Understanding about brain retraining. About a sort of "rebuilding" to use Joyce's word. And it's a very individualized process, not at all "cookie cutter." It takes a long time, a very long time. Working with my nervous system, with habits that were, I think, neuromuscular messages within my autonomic system. Retraining messages that go to and from my brain is no simple matter. I don't claim to understand it all myself.
Rehab is very hard work. I really like Joyce and Ann, and Dr. Margolis. They are all extraordinarily good, caring, dedicated professionals who extend themselves and want their patients to improve. But I don't like what I do in vision therapy. Sometimes I like Feldenkrais, sometimes not. I get very tired from vision and Feldenkrais, the kind of tired that makes me not want to use my eyes for anything even remotely complex. It literally makes my brain feel tired, like I don't want to think. I always need a break in the early afternoon, but especially on days when I have therapy. I should also say that Dr. Glad, my psychologist, is also wonderful. I've told him - actually more like yelled - that frustration really wasn't a strong enough word for how I feel sometimes. He listens to me while I complain, rant and cry, helps me slog my way through the mess of emotions I deal with, and helps me figure out how to keep moving. As do Ann and Joyce, with whom I have also shed tears. They all understand that dealing with my crap affects all of me, my whole self, so listening to me is important. I've had my private emotional moments, and although Ron is not a therapist, he has held me numerous times while I cried out my anger, sadness, frustration.
If I could wake up one day and find my problems had vanished overnight as seemingly mysteriously as they appeared, I'd be beyond thrilled. I could take the lessons I've learned, and be done with the whole thing. But I know that's a fairy tale. I know that's not going to happen. So I do my therapies. I understand that I have to take the process, and see where the process takes me, day by day, one very small step at a time. There is an awareness of my body that I have now that to a degree is good, but I also need to learn when to put some trust in my body re-learning, see how far I can go. I need to appreciate very small change, and know that as long as the overall trend is to forward progress, I'm good. I have no idea where I'll end up, and I don't ask Ann or Joyce, or Dr. Margolis. They have goals for me, as do I, but I've never done this before, and they've never done it with me. They've done it with others, and so I trust them. To take me as far as we can go as a team.

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September 26th 2014 - My High Holidays Challenge

I went to a Rosh Hashanah morning service today. I attended the morning service last year as well. But this year, I did a reading with my husband Ron. Our rabbi e-mailed us about whether or not we would be interested, and at first I thought "no way!" But then I talked about it with my vision therapist, Ann, and she encouraged me to do it. So I said yes.
I was told I'd get the reading via e-mail ahead of time and could format it however I wanted to. When I got it, I told Ron that I wanted to go first, and I would do the smaller amount. He said OK to that. I practiced a total of three times, once sitting down, once standing up, and once with Ron. I had formatted the reading so that I didn't need my reading glasses - I didn't want to have to deal with that. I also decided ahead of time that I would not try to look at the audience while I read. Switching from the reading to the audience and back again was more visual work than I wanted to do.
When we got to the church where we rent space, I went to a fairly quiet room to have my snack before the service. Then we went into the sanctuary. Once the service started, Rabbi Adam named, to thank in advance, everyone who would be reading. That's when I got nervous. My heart started pounding. I tried to keep some level of calm. I've performed many times on my flute, both as a soloist and with anywhere from one other person to an entire group. I would get nervous right before I started, but once I'd played a few bars, I got into flow and was fine. But that was before I got sick. This was the first public anything I had done. It's one thing to be in a crowd and know that no one is really paying attention to you, even if you feel self-conscious. It's quite another to be standing behind a podium at a very large rock in a sanctuary filled with people.
I don't know if it was a coincidence, or if Rabbi Adam intentionally gave us a reading early in the service, but either way I was grateful. I'd do it and then I could relax and enjoy the music and service. I walked up the aisle ahead of Ron, and over to the podium. I looked at Rabbi Adam, who nodded just a bit as if to say "yes, it's your turn." Ron was now standing next to me. I smoothed out my piece of paper on the corduroy-like fabric and took a breath. I was grateful the podium was high enough that the paper was a comfortable distance for me visually. I was keenly aware of my pounding heart, but I told myself "you can do this" and started to read. I took my time. As I got to the end, I thought "You're doing it" and then "you did it." Then I looked up and took in the crowd a bit as Ron read his portion. I felt a rush of emotion, realizing that I'd done it. When we were done, we walked back to our seats.
My daughters asked me later what I was nervous about. Being in the sanctuary was a lot of stimulation for me. Even though I don't get full migraines much anymore, I still have sensory issues because of my migraine condition, and being in a room with lots of people is a challenge. There's voices and conversations happening all over the room. The sanctuary is also a very large space, which means that spatially, it's a challenge. When I was up on the level where the podium is - not a stage but a few steps higher than the main floor - it felt very different than being on the same level as everyone else. So I was nervous about getting dizzy, feeling a spin, or struggling with my balance. I'm very thankful none of that happened.
Back in our seats, I took in the rest of the service, and the music. There were some songs I particularly enjoyed, and I took special pleasure in noting that my older daughter was moving to the music, obviously enjoying herself singing in the choir. I was sitting in between Cara (who will probably be up singing with the choir next year), and Ron. When the service was over, I did a bit of socializing, and several people who know me and are somewhat aware of my vestibular conditions made a point of congratulating me that I'd done the reading. I thought that was very sweet that they made a point of telling me, and it made me feel very good. I'm glad I took the challenge, and did it. And I'm glad my daughters saw me carry through with something that made me really nervous.

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September 24th 2014 - Thinking About Music

With the writing that I'm doing now, I find myself wondering about writing about music.  The thing is when I play, part of the point of it is that I don't want to write, it's not about using words.  It's about expressing myself, using my musical voice instead of needing to find words.  Whether I'm playing to figure out a tune that I've remembered, sounding it out, or watching one of my pets and playing something that seems to me to match their mood or behavior, it's all about the music.  I don't want to get into the technicalities, or talk about whether or not I'm flat or sharp when I play.  The truth is, I don't really care.  As long as the tone sounds good to me, I don't worry about being off-pitch.  I think I play mostly on pitch because the dissonance would drive me nuts, but I'm just listening.   
If I'm trying to sound something out I get frustrated if I can't figure out my starting point, and then I wonder what key the music is in, but then I just play around some more....sometimes I find the notes and then I mix in stuff I'm just playing around with, because I don't want to get caught up in "getting it right."  I want to expand because I do sometimes get a bit bored, but I don't get bored very often.  I do, as I mentioned to Cara the other day, get "into the zone."  Those moments of feeling like the music is just there and I'm not working too hard.  It's just feeling really good to play, to express myself through music, even if I'm the only one really listening.  I wonder sometimes if whoever else is home feels what I'm feeling while I play, but I don't ask.  That's not the point. 
I guess I'm thinking about this partly because I used to play my flute before a service for the High Holidays.  I did that for two or three years.  I also sang in the choir.  My older daughter Leena is in the choir again this year.  As far as I know they don't have a new instrumentalist playing before the service.  I'll miss hearing Todd sing Kol Nidre this year - he's just so wonderful.  I wonder a bit what sort of public playing I'll do again, or if I'll play with another musician again.  I don't know the answer.  I do know that I'm grateful for the music I make, and I'm way ahead of where I was when I first started playing again.  And I will soak in the music that I hear at the morning service for Rosh Hashanah and later for Yom Kippur. 

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September 19th 2014 - Explanation

Sometimes Ron or one of my daughters' will ask why or how something affects me. I always feel like having those I live with understand my situation better is a good thing, so I try to explain. There are some times in public situations when I don't bother. Thinking about raising awareness about vestibular disorders, which millions of people suffer from, I feel like some understanding beyond my family would be a good thing as well. Besides briefly mentioning a couple things I don't do, I'm going to talk about how some things affect me, and what helps me. There are many activities that are affected by my conditions, but I'm only going to cover a few right now. I should also say that this is my experience. Like many chronic conditions, vestibular disorders are very individual, so these are only my experiences.
First, some background. I don't completely understand the vestibular system, and to be honest, I think a lot of doctors don't either. I don't mean that doctors are incompetent regarding vestibular stuff. But in my experience most doctors only understand part of the system. Even though Chicago is a huge metropolitan area, there's only one clinic, run by two neurologists who specialize in balance issues. The vestibular system involves the eyes, ears and brain, but also really your whole sensory system. Which means that touch, and how you process info also matters. I think this is a big reason why many medical professionals don't get the full picture - there's so many potential pieces involved. I say potential because there's a number of different disorders - Migraine Associated Vertigo (MAV), Menieres and Benign Paroxysmal Positional Vertigo (BPPV) are three more common ones that a lot of people have heard of - but there are others as well. And a lot of these disorders come in funky combinations. So it gets pretty complicated. Anytime I hear about research, and efforts to educate medical professionals and speed up diagnosis, I'm happy.
So back to me. I have MAV, but I also have a vision disorder called Binocular Convergence Insufficiency (BCI). This disorder is pretty common, and actually fairly easily treated with little kids. It means that your eyes aren't working together to send info in a coordinated way to your brain. This causes problems. Vision therapy fixes it for kids. I'm pretty sure I had this problem when I was a child, but it was never diagnosed, and when I got vertigo, possibly because I already had the undiagnosed problem, my BCI was affected in a major way. Dealing with BCI as an adult with a compromised vestibular system is a lot more complicated. I also have other vision issues as well, which all relate to the vestibular system.
Driving is something that most adults do without too much thought after a while, but there are so many pieces to this activity. Manipulating the car, looking at the dashboard, looking at whatever is going on around you. So this is something I just don't do. I also don't go to movie theatres. The idea of looking at a huge screen, with surround sound in a dark theatre is definitely more than I can handle right now.
I am able to take walks now, including walking our dog with Ron or Cara or Leena. I like to do it with one of them so that if Cosmo gets too energetic I can hand over the leash. Also, whoever I'm walking with stays on the sidewalk and is more predictable in their behavior than Cosmo. I can write now, though I don't do a great deal of it, and writing on a plain piece of unlined paper is easier than managing to follow lines on, for example, a check.
Using a computer is a bit complicated. I use the translation feature of Google to listen to documents, like listening to this to make sure it makes sense! I have a software program call Dragon Naturally Speaking installed on my computer. This allows me to use voice recognition if I want to compose something and I don't want to deal with keyboarding. It's a wonderful tool but has its' limitations, so I much prefer being able to keyboard which I can now do. I always, however use it to scroll to the end of a document. Watching stuff scroll by is very difficult. Watching certain kinds of movement - especially if it's unpredictable or unexpected - makes me dizzy. When I'm on Facebook, I can do a certain amount since I am controlling the speed of the mouse, but I still have to take breaks. Basically, if a person isn't moving and sees something moving, the vestibular system has a lot more to process, and sometimes this processing gets confused. At least that's the extent of my understanding, and I think is the easiest way to explain it.
Reading is also a work in progress. If I'm on the computer, I use Google Translate frequently, and it's wonderful. I also sometimes zoom the screen to enlarge the font size. The down side to this is that a sentence takes up more room on the screen, which means I have to look from side to side - tracking - more. So I'm trying more and more to use my glasses. Even though glasses are incredibly common, having something on my face that changes how the light enters my eyes, and focuses images differently is both a help and also a challenge for me. I now read the comics, which is something I really missed for quite a while. I sometimes will read a little bit in a newspaper or magazine. A computer screen is obviously well lit, but also has glare, so I need to take breaks. This might mean turning away from the screen, or it might mean getting up and moving around. It might also mean doing something completely different for a while.
As I said in the beginning, Vestibular Disorders are experienced by a great many people. Whenever I share my experiences, though I'm reasonably sure others have similar experiences, I am only relating my own hoping to shed a bit of light for a little bit more understanding. And I'm very grateful that the Vestibular Disorders Association (VEDA) exists because people like me with these disorders need an organization working on our behalf. We need a public voice to push for awareness, and research so that diagnosis becomes a reality, preferably not after months or even years of waiting and suffering.

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September 17th 2014 - An Unusual Week (for me)

I sometimes think it's strange that figuring out balance for myself is about balance. And I often think of things that my various therapists have told me as I move through a day, make decisions, choices. Think about what I've learned even as I work to make progress.
I had three events over the last week which was a bit unusual for me. A condolence call, a Shabbat service, and a Sunday School meeting. There were also two events that I made the decision not to do - the Open House at my daughters' high school, and a concert at Allstate Arena.
The condolence call wasn't planned a great deal ahead of time, but when I found out that a friends' father had died rather suddenly, Ron wanted to go, and wanted me to come. The house was in the neighborhood and I didn't have anything on the schedule that day, so I said OK. I never know when I do something new what challenges I'll have to deal with. In this case, I didn't think about the fact that I'd need to walk from the car to the house, and then back again when we were done. It's harder for me to feel grounded in the dark. I touched Ron's arm lightly on the way there and back. I didn't want to hold on too tightly, because really leaning would have felt strange, but I wanted his presence to help me have a sense of my surroundings. 
Once inside, the house was noisy. People were milling everywhere, and I only knew our friend and her immediate family. We eventually found her, and she was very gracious. She sat with us and another couple whom she introduced. I paid some attention to the conversation, but the noise level made it difficult to concentrate, and I had a hard time feeling comfortable and stable on the squishy cushions of the couch. Ron had agreed to leave when I was ready, and when our friend got interrupted and got up to talk to someone else, I said I wanted to leave. When he went over to say goodbye, she came over and made a point of saying goodbye and saying that she knew this situation was difficult for me, and that she really appreciated that I made the effort. That made me feel good, and made the effort feel very worthwhile.
Noise is always something I have to think about, as well as visual issues. Going to the Open House the following evening was not happening. Besides the noise, quantity of info to process, and general busy-ness of the evening, going out two evenings in a row isn't a good idea. 
I wanted to go to the Shabbat service to remind myself of how it felt to be in the sanctuary of the North Shore Unitarian Church where we have our High Holidays services. But a Shabbat service wouldn't be nearly as noisy - less people - and the music would feel different because there was only one voice to listen to instead of the choir. I always get something out of listening to the service and our rabbi - belonging to Kol Hadash is very meaningful for me. The highlight of this evenings' service for me was listening to the soloist, Ellen Apley, sing "Imagine" acapela. As much as I love the choir, especially in the sanctuary, the fullness of the sound is a challenge. Afterward, I was tired, so I opted not to talk to anyone. I simply sat and let myself get reorganized when the service was over, watching people until my husband was ready to leave. 
The Sunday School meeting was more familiar - I've been on this committee for years, and had chosen to stay on even though both our daughters are now aides, no longer students. But still, I hadn't attended a meeting all summer, so I found myself needing to try NOT to pay attention at times, and look without much focus at the floor. I was glad I could attend a full meeting, plus do some socializing before and after the meeting. Having a way to feel involved feels really good. I'm glad to still be on the committee, to have that involvement - I'm able now when I attend to process enough that I can have input rather than just being there, and that feels very good. However, the morning was somewhat draining, and when I got home, I simply sat down and did some breathing and let myself, my sensory system, my vestibular system, just everything relax and reorganize.
Going to the Ed Sheeran Concert at Allstate was never on my schedule. The lights, the noise of many, many people, the amplified music, the late hour - all combines for an event that is beyond my grasp. Still, I know that getting through a week of several outings would not have been possible earlier in my recovery. So yesterday evening, I watched a movie (a DVD on a not-large-screen TV). I always try to focus on what I can do in my present, and the progress I make. That includes being able to write about, share my experiences - something that both from a mental processing and visual standpoint was not previously within my grasp.

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August 29th 2014 - Attitude Matters

I've got a lot of stuff going through my head. I'm still mulling over the idea of a support group. The online support group I just got added to has it pluses and minuses, like anything. I can use the computer way more than before, but I'm still limited. And call me old-fashioned, but I think there's something to be said for being WITH people. But I got to thinking about what I can and can't do. The tricky thing about special needs is that you - I - want to be able to do stuff, but the reality is that I need accommodations sometimes. Sometimes that works, sometimes not. 
I know I'm thinking about this because next month - Sept 21st to be exact - is the three year anniversary (not the right word for it in my opinion) of when I got sick. It's still a reminder to me of how life can change dramatically with no warning. I think we never think something will happen to us. It'll only happen to someone else. That's an emotional approach, not a rational one. I feel like I really need to figure out how to live in the present. Not where I used to be, and not wherever I'm going. I can try to plan, but I can't foresee the future. None of us really has the kind of control we want. We just do what we can. So I need to really do it - like Jason Mraz sings "Living in the Moment." 
I can either remain angry about what happened to me, or I can let that go and try to just live. Do my rehab, take that as far as I can, and in the meantime, live. Take what joy I can out of life. Putting it that way, the choice really seems pretty obvious. Not that I can't be angry about what's difficult, angry that I'm no longer healthy, but eventually I kind of say "OK, so where's this getting me?" Better to put the energy into making as much progress as I can, and just living. So I'll allow myself the anger and frustration in the moment, and then let it go and move on. I guess anyone with a chronic health condition, disorder, whatever you want to call it, needs to try to have that attitude. And try to find ways to still contribute to our own little corners of the world.

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August 23rd 2014 - My Other Voice

There are days when I feel like I have nothing to say about my music.  I always appreciate and enjoy my music...I always remember when I couldn't play.  But some days are more meaningful than others. 
This is a day I really needed it.  Ron and the girls went to the car dealer.  Turned out I didn't need to sign anything.  We talked about the car ahead of time, used the internet, and I talked to a salesman, and Ron and the girls when they were there.  But I can't be at a dealer for hours.  This reminds me that in October it'll be three years since I've driven.  Driving is on my bucket list, and my therapists know that.  But not now, not today. 
So I'm here at home.  And I took out my flute, because I wanted to be absolutely sure that I played today.  I briefly thought about taking out some sheet music, but for a number of reasons decided against it.  And the music flowed - sometimes playing really is better than listening.   And playing what's inside of you, instead of what someone has already composed is better.  Instead of finding the song with the right lyrics, or even just a melody, my own fingers speak.  Staccato or not, high or not, slow or not, whatever...it just felt like a wonderful voice, my voice, my other voice of music.... 

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August 21st 2014 - Anthony's ALS Video

I just watched the Anthony video which talks about the disease behind the ice bucket challenge. At one point Anthony says people don't want to see the disease, see what it does to people. I thought back to when I had carpal tunnel syndrome and had surgery on both hands. I've never forgotten what it was like not to be able to use my hands in a healthy, functional way. And of course with ALS, it's much worse, with an unhappy ending.
I was thinking too about one of the main changes in me since I've gotten sick. The way I'd put it is that I've "crossed over." It's like belonging to a special unspoken club or something. I'm one of them, the crowd of people with an invisible condition that impacts my life. And having that layer of understanding I think is good for me. I'm not saying I'm glad I have my problems, but I understand things from a perspective that I think is very hard to comprehend if you don't have something to deal with. I'm not as quick to judge, more likely to remind myself that I may not know a whole situation. I remember when Leena and Cara were in grade school, there was something called Disability Awareness Week. I hope they still do it - it was PTO run by some very dedicated moms. They didn't of course cover everything, but in addition to wheel chairs, they touched on reading, writing and speech. I don't recall if there were other issues as well. I think if everyone could have the experience for even just a day of having some kind of challenge- and I'm including mental health - it would make a difference. 
I think it's true that people don't want to see conditions or illnesses. It's scary but it's real, and can happen to anyone, and that's why people need to talk about it. I felt uncomfortable when I saw Anthony dealing with his mother, but mostly I felt sad for him, for his future. I'm not going to "catch" ALS, and I certainly have some understanding of neurological problems. And isn't understanding and compassion a better approach than looking the other way in fear?

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August 17th 2014 - Managing a Break from Therapy

So I had a session with Joyce on Fri., and tomorrow is Mon. and I don't have a session. Feels weird. I'm reminding myself of the distance I've travelled since I started with her 2 years ago last May. I know my life isn't going to be static over the next three weeks so I'll have to figure some things out, using the "virtual Joyce" I have on a USB. There are I think 3 sessions I did with her that she recorded.
It's harder for me to do Feldenkrais on my own, harder to process and do, as opposed to having her help me to do. So the fact that I was able to do some exercises following her instructions that she recorded is progress in itself. I feel unsure of what to use - that's sort of the point to me of working WITH someone. There's a couple exercises I'm sure I'll use. I figure I'll do my best, but sometimes thinking of being on my own fills me with anxiety.
I got a new chair yesterday to use at my computer, and I know it's better for me, but it's also something to get used to. I put a towel under the wheels so it feels more solid. We're finally going to have to become a two car family this year. This reminds me that in October it'll have been three years since I've driven. I want to drive again, but driving feels like climbing a mountain. When I'm ready, I'll need to break it down into baby steps. We had to talk as a family about the actual purchase process, because I can't spend hours at a dealer.
I'll have a chance to talk to Dr. Glad tomorrow and then he'll be gone as well. Joyce, Dr. Glad, and Ann (vision therapist - thankfully NOT going away) all say I can do it. I've gotten through stuff before. But the thing is, Joyce is the one who finally helped me start to regain my balance, and it's hard to understand what that's like if you haven't lived it. Getting my diet under control cleared my head - after a year of being in a migraine fog! But everything I do works together. I know Joyce will be back, but right now three weeks feels like a long time. 
Makes me think about the whole stigma thing. Talking about this stuff, sharing this stuff is so others have more understanding, hopefully raise awareness a little bit. Not for people to feel sorry for me. I DO think it's important for people to understand that there are people who struggle with all kinds of things others can't see. These people, myself included, aren't at fault, or bad people. Personally, I want to improve as much as I can, but clearly it's a slow process and in the meantime understanding from others that really simple stuff can be a big deal matters. I was grateful that Joyce didn't talk about all the cool stuff she's gonna do while she's gone. I'll just have to get up each day, and do what I need to do, hopefully finding things - even if they're little - to enjoy each day.

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Early August 2014 - Robin Williams

I've had a couple of private exchanges with friends about Robin Williams, and seen a lot of really thoughtful posts - it's great that people are trying to keep the conversation going. 
One friend said that he couldn't understand the act itself, but that he hasn't walked in other people's shoes and doesn't know their stories. I wish more people could have this attitude, admit to not understanding the act, but also to not knowing what it's like. Just like a headache isn't the same thing as a migraine, and feeling occasionally dizzy isn't the same as having a vestibular condition, feeling even very down or anxious is NOT the same thing as mental illness.
I've never been with someone who was suicidal, but I have been with someone who was in the grip of mental illness. What I know is this: it's difficult to describe how someone's thinking is affected by mental illness, but it IS. I suspect the world looks, feels, is just totally different. Situational anxiety or depression are certainly real - I've experienced both myself - and can contribute to a clinical anxiety or depression, but they are NOT the same thing. Clinical anxiety and depression are illnesses - not contagious like a cold, but nevertheless illnesses. And for those who haven't experienced it, we can't presume to know what it's like. But we need to talk about it, so people who suffer will reach out for the help they need, instead of feeling shame, and hiding.

I'm heartened that even though Robin Williams lost his battle with depression and alcoholism, there's been so much discussion about suicide. That's certainly good - and most though not all of the discussions have been good.
I was thinking about this this morning as I was thinking about Joyce (Feldenkrais) and Dr. Glad (psychologist) being away (3 and 2 weeks respectively) at the same time. This is the first time since I got sick that two of the professionals who make up my support system won't be available. I know that they need to recharge, and do their jobs better if they do. But I still don't like it. 
Joyce and Dr. Glad are both important to me, and I don't like thinking of neither of them being available. It's unnerving. I don't like feeling vulnerable - I guess no one does - and their absence makes me feel unsettled, scared. I'm not saying it makes me feel suicidal, but rather uncomfortable, anxious. So I told myself "you have to dial it back a bit," and I also told myself I need to reach out. 
I also told myself when I was playing my flute today, that I need to make sure to keep expressing myself through, and listening to music. There's so much solace and comfort in music. And sometimes, it just makes me happy.

What an outpouring of memories and grief over the news of Robin Williams - when I first saw the headline I didn't believe it. A man who brought laughter, joy and heart to so many, yet was in so much pain that he couldn't tolerate it is hard to think about. I wonder if he was thinking at all clearly when he died, if he had any inkling of how people would react to the news.
There's been a lot of commentary - much of it good - about suicide - and I found myself remembering in the recesses of my brain many years ago when I volunteered for a crisis hotline. This was in the 80's when so much of the counseling world had changed but was still I think in its' infancy. There was so much less known about depression or any other mental illness, as just that - an illness. There was training, but I mostly remember being told to keep callers on the line. I think there was a script, but I don't remember it.
I was scared I would actually get a caller - even though I had volunteered, fundamentally I wondered how I could possibly keep someone from taking their own life. But what I understand better now than I did then is that anyone who calls has taken the first step to not killing themselves - they've reached out. And listening was the most important thing I could do. And I'm thinking now that people who need help need someone, anyone. If you think someone is in trouble, you should reach out...because waiting for them might be waiting a little bit too long.

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