September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

Archive for April 2015

April 30th 2015 About music - universal and personal

By | Published Thursday, April 30, 2015

I've been thinking a lot about music.  I want to focus on who I am beyond my invisible disorders, and DO things related to that, and music is definitely a big part of who I am.  Music is not just a universal language; it's an experience everyone can share.  I have so many memories tied to music - that I've played, or sung, or music I've listened to.  Whatever was going on in my life seems to be linked to music.  You don't have to be talented to appreciate music, you just have to find music that speaks to you, fits your mood, or even makes you feel like dancing.  I have songs on my iPod that I have listened to dozens of times - not an exaggeration!

Having Lovely here made me think about music, because everyone can understand, appreciate music.  Even when there's a language barrier - which is more obvious now that she's back in France, and can't DO anything with us - there's loads of music she can listen to.  Lovely enjoyed listening to me playing my flute the few times she heard me on the weekend.  I did NOT do it like a performance - I'm not ready for that -  but I wanted to play as I always do, each day, even though she was here.  So I did, and she gave me a thumbs up.  I wanted to connect with Lovely on Facebook so I sent her a link to my YouTube channel.  I'll occasionally send her other videos as well.

There's a wealth of all kinds of music available online now via YouTube, and lots of wonderful music themed videos.  When I saw the news about the death of Jonathan Crombie, the actor who played Gilbert Blythe in the Anne of Green Gables series I loved, I looked up A of GG videos on YouTube.  There are a number of videos and most of them have really pretty music in the background.  I've also watched loads of Harry Potter videos set to wonderful songs.  Music is like a magic thread that ties everything together.

I always notice how music is used in movies... it's hard to imagine movies without music.  I finally saw the movie Extremely Loud and Incredibly Close, based on the book by the same name.  Remembering 9/11 stirred up a music memory.  We took the girls to Tom Chapin kids' concerts at Ravinia for a number of years.  I found myself remembering singing Tom Chapin's song "This Pretty Planet" with Leena about a month after 9/11.... it was just a moment that flowed one day, that I've never forgotten.  

I have loads of wonderful musical memories from Kol Hadash Humanistic Congregation, which my family and I have belonged to now for 13 years.  Music is always a key element in services, whether it's the informal setting of Sukkot, or much more formal Kol Nidre at Yom Kippur.  I remember playing my flute at a few Shabbat services, something I'm not currently doing, but still a special memory.  If I were to try to imagine my wedding, or the girls Bat Mitzvahs, or Chanukah parties without music, it would be like there was a strange silence, a missing soundtrack.

I've been trying to read sheet music every week with my glasses.  It's a goal I set myself because I want to expand the music that's accessible to me.  I'm keeping the music pretty simple for now.  And I'm also trying to sound out some new, simple songs.   Once I figure out the starting note, that's really helpful.   And I try to figure out what key it's in.... sometimes it's just frustrating, but then I figure something out, and think "hey, that's it!" and it's really cool.  So satisfying to hear the song come to life, hear the right notes come out of my flute... and then I try to repeat so that it eventually feels natural.  My fingers start to know which note comes next.

I've also been thinking about what I like to DO with my music.... and that led me to think about goals.  And that sometimes goals need to be adjusted, but don't have to evaporate.  Like eventually doing another video for my YouTube channel - a simpler video, that's visually less demanding, but still doable.  A video that focuses on a favorite piece of music or two.  Just me and my flute.  And playing with another musician... I used to get together with a couple flutists regularly and I really enjoyed it.  Someday I want to do that again... I won't be playing fancy music at first, nor will I play for a long time.  But even a little bit, with some laughter thrown in, would be wonderful.

And then of course there's teaching a child, or an adult to play a flute.  I really loved doing that.   It's really wonderful, magical when they play the first real note, or realize they're actually playing a simple bit of music - a stanza or two.  Doing that again with even one student would feel so good.  Leena commented that she thought I was improving, which surprised me.  But I realized that not only do I try to play every day, but I'm working hard at breaking old bad habits.  I'm learning to really pay attention to breathing.  And I've learned to listen, because I have to.  Sometimes I just play and let my fingers go, and a sound may surprise me.  And everything, especially being a better listener means, I think, being a better teacher. 


I could worry about what might happen, because life does have a way sometimes of throwing a monkey wrench into plans.  But I can't let that kind of thinking, worrying about "what ifs" keep me from setting goals.  You have to - I have to - set goals.  Dreaming is nice, but setting goals means you actually have a plan.  I strongly believe that being functional is important, but function that builds towards a purpose feels better.  I don't want to set myself any deadlines for when I'll be playing duets, or recording a video or teaching someone how to play the flute.  I just know that I'll be working towards those goals, and that there will be lots of very small steps along the way.  But every little step builds on the one that came before it.

 For anyone who wants to take a look, here's a link to my YouTube Channel -
https://www.youtube.com/user/cool09VIDeos1

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April 22nd 2015 My thoughts as we all say goodbye to Lovely

By | Published Wednesday, April 22, 2015

Lovely is leaving today.  Ron drove Cara and Lovely -  with her luggage - to school this morning.   Lovely and the other students stored it all in a classroom, and will spend the morning with their respective correspondents.  Then we'll say goodbye to Lovely at the high school after the pizza party lunch.  I'll bring my own food - pizza has all kinds of migraine triggers for me!

I knew that having her as a houseguest - even though she has not been difficult, and has gotten to be good friends with the girls - would be a challenge.  I wrote about the challenges in my last post.  What I didn't expect was that she would make me think about what life would be like if I were healthy.

It's not because *she* is healthy, nor that her older sister -  25 and living in Paris - is healthy.  It's because her parents Evelyne and Yves are both healthy.  I also know that I know other families in which the parents are both healthy, but having someone living with us for two weeks brought it into sharper focus for me.  I believe that it would have been impossible for me to have a houseguest whose mother is healthy, and not think at ALL about what a different picture might look like.

Lovely's done some traveling, including going to China.  Lovely and Leena and Cara had a conversation once about whether or not they like being on planes.  Despite turbulence, etc. the conclusion they agreed on was that planes are good because you can travel to places that are far away, and that makes it worthwhile.  I know that for many people travel is fairly common, whether by plane or car, but conversations about travel make me feel very sad.  It's painful to think about people I can't visit, places I can't go.  Traveling, beyond a one hour car ride to my parents - which I'm grateful I can handle - is not possible for me right now.  Of course travel costs money, but if you're healthy, you can have a paying job.  Having some kind of paying job is not an option for me right now. 

It's not just about travel.  I find myself wondering what it would be like, how my life, and our lifestyle would be different if I didn't have my invisible disorders.  It feels a bit like a fantasy, a sort of day dream, letting myself think about myself completely healthy.  I get wistful, thinking about being able to do things more easily, and about not having to miss out on doing things.  I know that while I have a hard time dealing with noise, it's too quiet in the house when everyone has gone to something, and I am home alone.  And I've come to believe that I may never get used to missing out on stuff, that I will always feel moments of sadness.

I picture a family, in this case Lovely's -  a family in which no one has to think about management and coping, and all the myriad STUFF I have to think about.  I know on some level Ron and the girls are much more used to having a wife/mother with invisible disorders.  And I know that there are many other people with invisible disorders figuring out all the time how to manage.  I also know that many of those people have families, AND I know that living by myself would be immeasurably more difficult.  I'm really not saying this so that people will feel sorry for me - it's just a reality I've been thinking about. 

I've also thought about how different it is to live in Central Europe, in a  relatively small town (Rodez) two hours away from a city - Toulouse in Lovely's case.  Leena commented that even though Deerfield isn't a huge suburb of Chicago, you can go from one community to another so easily that our community feels bigger than it is.  Some differences are just that, differences - neither good nor bad.  But I'm grateful that we live in a suburb of a large metro area because I wouldn't have the resources I do - even somewhere else in the States - or it would be much more difficult for me to have access to what I need.

Hopefully Ron, Leena and Cara appreciate my efforts, given my invisible disorders.  I'm proud of Leena and Cara in particular for being such good hosts - I know they have a closer relationship with Lovely than is typical of students with their correspondent. Even with the challenges, I'll miss Lovely - I know Leena and Cara will be very sad to say goodbye, and I know that they will all, thanks to our high tech world, remain connected.  And in the end, I'll be able to say I did it, and I'm proud of myself for that.  I remind myself - again - that I'm working all the time to make progress.  And that I must, must, MUST use my sadness and frustration as motivation to keep working.  I'm doing my rehab all the time to be able to do more, and I'm glad I took this challenge.  I won't have to look back and wish I had said "yes, we'll host." 


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April 15th 2015 A house guest; how it challenges me

By | Published Wednesday, April 15, 2015

Normally we don't have house guests - it adds challenges that I honestly don't want to deal with.  However, our younger daughter Cara participated in a French exchange/correspondent student program through her French class at her high school.  Cara stayed with a French family last summer, for two weeks, so we now have Cara's correspondent, Lovely Puech, staying with us for two weeks.  She's very sweet, and eager to learn, which is great.  There are several specific challenges to having Lovely as a guest, but I couldn't let my invisible disorders keep Cara from participating in the "exchange" part of the program. 

Some of the challenges are spatial (which has to do with my sense of where I am, which grounds me): an extra chair at the dining room table, a missing chair in a different room, a bedroom with an extra bed to navigate around, or no chair to sit on.  The number of people taking my daily walk with me and Cosmo varies more.  None of these are huge changes, but when something in my regular living environment changes, my body has to figure out the space differently.  It's a layer of effort that I don't normally have to do - my activities and routines at home are more typically where my challenges lie.  When my physical environment changes, it affects my sense of balance, my literal equilibrium.  Some spatial changes are easier to adjust to than others -  for the first couple days I just need to go sit down, and let my body reorganize, and then my body learns the new info.  

I have to think about providing food for an additional person.  This is relevant for our grocery shopping, meal preparation, and generally making sure meals - snacks, lunch, etc. - are taken care of.  I'm used to thinking about food for myself, Ron and the girls, and am definitely not a gourmet cook.  Thinking about another person, whose likes (or dislikes) I don't know well, is an additional layer of processing.  I am finding ways to manage, but it's tiring.

Planning our schedule is more complicated.  There's all the usual stuff for our family.  In addition, we're trying to give Lovely a feel for what it's like to live in America.  This includes (but isn't limited to) non-tourist outings such as a Passover Seder at my parents house, and shopping at local stores for items we need.  My daughters, with my help, want to give Lovely varied  experiences.  All of this is very positive for my girls, as well as for Lovely, but it takes a lot of thought. I'm not involved in all of the outings  - in fact, only a couple - but the planning and coming and going of everyone is giving a very different feel to the rhythm of my day.   I get to the point that thinking about one more thing - whatever that thing may be - is somewhat overwhelming.

And of course, there's the language.  I used to speak French, but since I don't use it, I'm not nearly as fluent as I once was, and the goal is for her to improve her English.  She really wants to practice her English, but it's VERY different to communicate with someone who isn't fluent in English.  So I find myself - and I'm sure this is true for Ron, Leena and Cara as well - really thinking about how I say things.  I want to keep communication clear and simple, and that's surprisingly hard work!

My nervous system knows certain routines, and when things are less predictable, especially in my own home, it's a lot to process.  My own routines are impacted.  Again, it doesn't need to be a major difference... my nervous system is sensitive, so even thinking about wake up routines differently feels off to me.  She knows I have a special diet, and that I rest every day, and has been accepting of some basic rules.  She hasn't questioned anything, and has been friendly, polite and appreciative.  But it feels different to me to have her in the house. I find myself feeling a bit exposed, self-conscious about my disorders.  Despite what I write about, it's hard to actually LIVE some of what I've thought about.  But I realize that based on what she's done with me, she probably has little sense or understanding of what my limitations are, and my disorders really are invisible to her.

I'm more relaxed than the day she arrived - I think we ALL are - but I still am keenly aware that my home environment and routines don't have the element of  predictability that I normally rely on to help me navigate.   My basic strategy right now is to be careful about taking breaks, remind myself to breathe, and try not to overextend myself. For example, being on the computer is visually challenging, so I'm trying to be careful to pay attention to my body when I need to stop for a while.  I'm giving even more thought than I usually would to how I structure my day, trying to figure things out.  Considering what I do and don't have control over. 

I'm trying to be mindful of the fact that my home environment and routines require more effort, and give myself credit for everything I'm doing to cope.  I also want to let myself acknowledge that I'm doing all of these challenges, and enjoy seeing my daughters having such a positive experience with Lovely.  I remind myself that challenges, and rehab, are always a balancing act.  I remind myself to breathe, and to try to live in the moment and find some enjoyment in the whole thing, rather than ONLY focusing on all the extra effort.  I think we'll all be sad when the experience is over.  Admittedly, I'll be relieved because constantly putting out this extra effort is draining, but I also think I'll be glad that I did it.


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April 10th 2015 Challenged or not, we're all human beings

By | Published Friday, April 10, 2015

I've written that one of the best ways to fight stigma is to do what you need to do, speak up for yourself, and not make a big deal over it.  It's also important to realize that we ALL know at least one person with an invisible disorder;  we're all people, whether we look the same or not.  And when you know what they're struggling with, it humanizes the problem.  All of a sudden it's not this distant thing that "they" deal with.  It's the Depression or Anxiety that someone struggles with behind the smile.  It's the vision disorder no one can see, the vestibular disorder that the person with whom you're speaking is coping with. 

Stigma is about how people are treated, but it's also about people with problems feeling uncomfortable sharing something, doing something, saying something because of being afraid of how they'll be perceived.  How people will react to them.  A number of things have influenced how I feel about stigmatization.  Raising my daughters to be kind, tolerant, compassionate people is important.  But I've also had some personal experiences that made an impression on me.  Obviously my own illness is one of them, but a few earlier experiences also had an impact on me that really stick out in my mind: one as a teen, one in my mid-twenties, and another a few years later.

When I was a teen - about 15 or 16 - at Camp Chi one summer, one of the girls (I'll call her Sarah) in my group had some kind of hidden disability.  I remember Sarah had trouble processing things, dealing with social interactions.  And she was overweight, and sadly this was well before adults did anything about bullying.  Sarah became very withdrawn, and slept a lot.  At the time, I had no idea that excessive sleep was a sign of depression.  To her credit, the camp counselor for my group spoke up after about a week, and encouraged us to interact with Sarah more.  I wasn't a particularly socially skilled teen myself, and definitely not one of the "popular" kids, so I think it was a good fit for me to reach out.  I also felt bad that Sarah felt bad, and we became friends.  She was incredibly sweet, and really flourished with attention.

About 10 years later, in the late 1980's, I was working at a drop-in senior center where we provided programs and various services for the elderly.  We got a call from a mom who wanted her young adult disabled daughter to have a volunteer opportunity.  Her daughter (I'll call her Kathy) was living at Ronald McDonald house.  Her mother wasn't completely honest about the severity of her daughter Kathy's disabilities (she had cerebral palsy), which became apparent once we met Kathy.  However, we all really took to her - she had a wonderful, friendly attitude and tried really hard.  We decided to let Kathy stay and managed to find things for her to do.  She helped out in the kitchen, and everyone loved her.  It was such a pleasure to see not just how others interacted with Kathy, but how happy she was to be with us.

A few years later, no longer working at the senior center, I met my husband-to-be Ron.  After a couple months, he told me he had what was then called Manic Depression (MD).   Ron was the first person whom I knew so personally who had an invisible disorder.  He told me later that his mother was a bit concerned, and wanted him to wait to tell me, but he had thought the timing was right.  I knew nothing about MD (now called Bipolar Disorder), and in the Fall of 1990 you didn't go onto your computer and Google "Manic Depression." Nor did you look it up on Wikipedia.  So over time, in conversation with Ron, I learned about his illness.  About medication and the importance of sleep.  I learned a great deal more when he had to switch meds eight years ago.  But in the end, I always felt that I had to see the person Ron was and is, not his illness.  That's what had happened as a teen at camp, and with Kathy at the senior center; I had the opportunity to interact with them as individuals with personalities, not just people with problems. 

Now I jump to September of 2011 when I got sick.  I am now the one living with an invisible disorder.  Looking back on the early years of my marriage, I've talked in the more recent past with my daughters, about what goes through your mind when you meet someone you are thinking of spending your life with, who has an invisible disorder.  The thing is, you never know for sure what's going to happen in your life, or someone you care about.  I ended up getting sick, and that happens to millions of people - even if you take good care of yourself.  Yes, stress can trigger something, but everyone has stress in their lives.  Who's to say that if I'd been better able to handle stress, I wouldn't have gotten sick?  I'm not going to blame myself, and I don't think anyone should blame themselves.  We don't know enough to know exactly how genetic disorders get triggered, and bodies are just so complex.  I don't think it's a cop-out to say that things happen, that no one is immune to health problems, even though we'd like to think it will never happen to us, only to someone else.

So I saw as a teen and adult how someone with an invisible or visible disability/disorder could flourish if their challenges weren't the only focus.  I've now had a huge range of experiences in the land of invisible disorders, though I certainly haven't experienced everything.  People with challenges don't all have the same experiences; I've never been confined to a wheelchair, I haven't had to learn to speak again because of suffering a stroke.  Those are only two things that come to mind... I'm sure someone else could come up with other experiences. Each person is a unique individual, whether challenged or not; we don't all perceive things the same way, and people often have different opinions.  But we're still all human beings with thoughts and feelings, all wanting to make contributions, to feel productive.   It's important in the ongoing effort to end stigma, for those with various disabilities to speak up, to show that we're simply people with challenges.  But it's also important for those fortunate enough NOT to have any special challenges/limitations, whether visible or not, to recognize that they aren't really so different from those who do.

NOTE:  I've written before that my MAV was triggered by the hormone changes of menopause.  I think hormones play a large role in migraine conditions, and may be one reason migraine disorders are much more common among women than men.  My point in this piece is that it's impossible for me to say exactly why my genetic predisposition got triggered, and I'm not going to try to explain it, or blame myself.


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April 3rd 2015 Hope and optimism: it's a choice

By | Published Friday, April 3, 2015

When people hear the word "rehab" my guess is they think mostly of either short term physical therapy (like after something like knee surgery), or drug rehab.  There are actually lots of varieties of rehab.  Whether a person lives at a rehab facility, or not, rehab applies to anyone who needs to regain some degree of function in some way.  The dictionary definition of rehab says, among other things, "(to be restored to) a condition of good health."  I know that stroke survivors often have to do rehab.  Rehab therapy of some kind is also really common for people with various disorders that affect their balance (I don't want to say "vestibular" since balance is about more than your vestibular system). 

I haven't asked anyone, but if I had to guess, I'd say that most patients think that when they do rehab, they'll "get better."  So what does "get better" really mean?  My own perception of rehab continues to evolve.  The issue with rehab is that, in reality, "better" means improved.  Going back to the definition, I DO think you can be "restored to good health," BUT you may not be (often I think are not) exactly the way you were before you needed rehab.   A good therapist (which I'm very thankful I have - two actually) will have ongoing discussions, in fact will encourage discussions with you to help you understand the process.  Hopefully you can talk with whoever you're working with about goals, about what will happen if you start to plateau, etc. 

I'm not going to go into detail about what I do, but I do two kinds of rehab therapy.  One is Feldenkrais (named after the man who invented it) therapy, which focuses on balance, movement and body awareness.  The woman I work with, Joyce, is an occupational therapist.  The other is vision therapy, which focuses on various aspects of vision, including Vestibulo Ocular Reflex (VOR).  My vision therapist, Ann, (supervised by a developmental optometrist) incorporates some of what's done in Vestibular Rehab Therapy (VRT), but has much more knowledge of how vision works, and how vision impacts balance.  I talk with Ann and Joyce about exercises (each one no more than a minute or two) I do on my own, specifically tailored to me, that get integrated along with what I do in my sessions.

I've thought a lot about what goes into doing rehab, besides who you work with and what you actually DO.  There's a lot that comes to mind: 

Hard work, effort, optimism, attitude, perspective, choice, patience, progress, persistence, and hope.  Someone else might come up with some other ingredients as well. 

Rehab is a big part of my life, extending beyond the two different therapies I go to on a weekly basis.  When I look at all these words, the one that I keep coming back to is "choice." 

What conscious choices do you make when you do rehab? 
Are hope and optimism choices?

For the first question, to me the main choice is to keep on pushing through and DOING rehab.  "Rehab is fun" - said no one, ever.  Rehab is NOT fun.  You can have a laugh with your therapist; I've told both my therapists that I like them.  And it helps to like the people you work with, in fact I think it's essential.  But it still doesn't make rehab fun.

About the second question: I feel like you absolutely have to make a conscious choice - continually - to be optimistic and hopeful.  I think that some people are by nature more optimistic than others, which to me means that some people have to work harder at being optimistic than others.  Sometimes being optimistic is very difficult.  I wrote recently about what I miss out on, and how hard things are at times.  The afternoon that I missed a party, I said to myself "you can't spend your afternoon thinking about this, you'll just bring yourself down."  When I'm missing out on something, I try to do bits of things I enjoy, and I try not to do things I really don't enjoy (like chores).  When it's not a question of missing out on something, but rather that I'm having a tough day for whatever reason, I feel like literally keeping moving, keeping on doing stuff - even really basic stuff like laundry - is important.  Making myself think about things that don't have to do with me also helps me. 

Music has always been really important to me.  I realize that not everyone can play an instrument, but anyone can listen to music.  I recently saw a post about songs about needing help, that people with chronic conditions identified with, and I just couldn't relate to that at all.  I  always listen to encouraging music, music that lifts me up.  Some examples for me are Phil Collins "You'll be in My Heart," "Go the Distance," sung by Lucas Grabeel, and "Don't Give Up" by Josh Groban.  I also love Jason Mraz - he's so upbeat; I love his sound and his lyrics are like poetry.   Keith Urban is another singer who seems to be a really good person, and I can always find something of his to lift my mood. 

Of course, making the choice to be hopeful and optimistic is incredibly hard if you're still looking for answers.  If you're floating around in the land of "I have no idea what's going on, or what to do" it's very hard work to be optimistic. You have to have reasons to be optimistic, and the times when you're telling yourself not to give up are exactly the times when it's the most important to be hopeful.  If you don't have answers yet, the first reason to be hopeful and not give up is that you're worth it.  The second reason is that once you DO have the right treatment plan for your problem, you have to get to work.   Once you have a gameplan, and you're working with people you trust (doctors, PTs, OTs, etc.) that's when I think it's time to choose to be optimistic and hopeful.  Sometimes making these choices is really really hard.  I definitely lose sight, lose my hold on hope and optimism at times.  But then I think about the progress I've made, and make the decision, the choice to be hopeful and optimistic. 


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