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 July 2015

July 29th 2015 Another "I can do it" list, and what I've learned about improving

By | Published Wednesday, July 29, 2015

NOTE: Please cut and paste into Google Translate to listen if needed.

I wrote about my goal of teaching flute again.  Having a major goal is a good thing, but big, long-term goals by definition take a lot of time and effort, and a recent conversation made me think about taking a look at what I can do RIGHT NOW.  Thinking about what I can do now got me thinking about a post I'd written back in December of 2014 -  my "I can do it" list - here's a link to that post if you'd like to read it -

http://visiblepersoninvisibleproblem.blogspot.com/2014/12/december-28th-2014-attitude-and-what-i.html

Some of the items have changed less than others, but it also depends on what I've been trying to change.... for example, I haven't been trying to change how much housework I can do.  What I can do feels like enough, and doing more chores would add nothing to the quality of my life.  Since limitations are a given for a person  - me - living with invisible disorders, quality of life is very important.

So what can I add to my list? It's worth noting that I decided NOT to write down what about any of these tasks/activities is still difficult for me, what I'm still working on.  The point of this list is to remind myself of what I CAN do.

1) I am using my reading glasses more when I use my computer.

2) I am practicing using my sunglasses; moving from inside my house, to the front stoop, down the steps, looking at flowers, and going in reverse to get back INTO the house.

3) I have walked our dog by myself - this isn't something I do frequently, but the fact that I am able to is important.

4) I am using my reading glasses to read simple sheet music - clearly this is a big step for me, and one of the reasons that I now have resuming flute teaching as an eventual goal.

5) I am able to do Feldenkrais Therapy - FT - exercises on my own - this is another big gain for me.... I definitely still need FT sessions with Joyce, but there is some maintenance I can do for myself now.

6) I am able to do Vision Therapy - VT - exercises on my own - this again, is a big gain for me.... my brain/body tolerates more retraining than before, and I can make more progress because Ann can give me exercises titrated for me to do at home.

7) I am able to do new exercises more frequently in FT and VT sessions - this is a good sign because it shows me that my vestibular, vision - and really my whole sensory system  - can handle new stimuli better.

8) I still need to take a break in the early afternoon - particularly on VT and FT days - but my breaks are shorter.... this means my stamina/endurance is getting better.

9) Speaking of stamina, I still need to be careful not to overload my schedule, but for a variety of reasons I've had to do more the last two months or so - and I've been able to do this.  I get very tired, and definitely crash at the end of the day, but it still as a gain for me!

10) I can sit with my eyes closed for a short period of time - keeping your balance without involving vision is actually a complex task that many take for granted, and it's a big deal that I can do this now.

11) I felt I could set a major goal for myself - the fact that I could wrap my head around that idea to me is really important.

When I first looked at my December list, I thought "hmmm, so I'm still doing that, still doing this...OK, so where's the progress?" and I had to think a bit.  And then I discovered that I could come up with some things, even though I had to think about it.  My point is that we need to take that time to think about if ANYTHING is better.

I also want to share some things I've learned regarding improvement that I think are important to remember:

1) Comparing progress over a period of a few weeks, is not (in my opinion) a great idea when doing something like brain retraining - you don't want to feel like you're not accomplishing much.  Compare over a reasonable amount of time - otherwise you're just not being fair to yourself.

2) Try not to compare yourself to others, especially those who appear to be doing better, or have an easier situation than you.  Everyone's circumstances are different; if you don't know someone well, you probably don't know the full story, and everyone has a unique twist - try to focus on yourself.

3) Compare yourself to yourself once you got sick, NOT before .... the idea is to see what progress you've made and thinking about what life was like before you got sick is likely not helpful... it certainly isn't for me.

4) This is really important - remember that BETTER doesn't mean perfect, or that problems are all gone - it means IMPROVED.  That's OK - improving a situation is a very good thing.

5) Getting better - improving - does not happen in a straight line.  It would be so wonderful if that were true, but I think it's rare that that happens, if at all.  I have bad days, whether I'm tired, or stressed, or whatever.  Sometimes when I do an activity or do a new VT or FT exercise, I really feel it.  I remind myself that this doesn't mean I'm in trouble the way I was when I got sick in the first place.  It doesn't mean I'm suddenly on a downward slide, headed in some way for disaster.  It DOES mean that my getting better - improving - isn't an evenly slanting upward slope. 

6) Last but not least - it's important with all the effort I have to put out, to do a little something every day that gives me sustenance, with as little work as possible.  Whether that's enjoying some pretty flowers for a few minutes, or snuggling our cat or dog, or something else.  I need to "fill my tank" with something that's very low on the effort scale.

So I do the best I can, and keep going.  And I remind myself to give myself credit for what I can do, and each of my gains.


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July 20th 2015 Setting a goal: giving flute lessons again

By | Published Monday, July 20, 2015

NOTE: Please cut and paste into Google Translate to listen if needed

I stopped giving private flute lessons at the very end of 2010, and I wrote earlier about my goal of getting back to teaching; I know I'm not ready to give an actual, half hour (much less hour) lesson right now.   I also said that I knew there would be small steps - steps that I will work on in Vision Therapy - VT - and Feldenkrais Therapy - FT - that will build toward this goal.  I have some ideas about what I need to work on, what will be involved in teaching that will present challenges for me, and I'll need to do some experimenting.  I also know that I'll need to expose my body and brain to actual bits and pieces of teaching.

Before I go any further, I want to share a bit of back story on my flute.   I began playing flute back in fourth grade.  This is still the age when many schools introduce instrumental music.  I remember being really bored in regular music class, and then in fourth grade, being offered the chance to play an instrument.  I didn't know anything about instruments; neither my parents, older brother, or anyone else I knew played one.  But I was interested, and it was better than being bored.  By the time I was in high school, and playing in the band, my parents thought that getting me a good flute (not a student flute) was appropriate, so I was given a silver, open-hole, Gemeinhardt flute. 

My friends said to me "well, now that you have a good flute, you need to learn how to play it really well."  I was a bit bothered by these comments, but fortunately a wonderful teacher, Susan Levitin, lived a few houses away.  And so my weekly private lessons began.  My lessons with Mrs. Levitin were definitely a high light of my week each week... not only did I soak up everything she taught me, but I also really liked her.  It was cool to get to know another adult who wasn't a teacher at my school. 

I took private lessons for about a year in college, and played in a small ensemble, but I was also singing in choir, and doing some writing, so my flute lessons came to an end.  Once I graduated, I looked for a group to play with, and to make a long story short, I helped co-found an all flute choir - Lakeside Flutes - in 1988. I'm proud to say, though I haven't performed with Lakeside since 1997, Lakeside is still in existence. 

I never gave up playing my flute, and when my older daughter was in 4th grade, I taught her to play the flute.  This was how I discovered how much I enjoyed teaching people to play, and I began to do just that.  I gave private flute lessons until I had to stop in December of 2010 when I developed hand problems.  When I started working with Joyce (FT) in May of 2012, I really wanted to be able to play again.  Not being able to play was horrible. 

It took me about a year, and the first thing I did was to simply hold my flute, feel the weight of it in my hands, and arms.  Then I finally began to make music.  Only a few notes at a time in the beginning, but I was officially playing again.  Even now, remembering, the memory is absolutely amazing.    But this was just the beginning.  For a long time I played just random notes.  Then I began to string notes together, into what I still call "free form."  Not following any particular improv rules, but listening, feeling how my body moved.  It was - and still is - really important not to go back to non-functional habits.  Doing FT has been, and continues to be incredibly important, because it helps me to break up old habits that did not work well.  I refuse to give up playing my flute, but I will no longer tolerate physical pain or injury.

Playing "free form" music is wonderful, but it's not enough for me.  I eventually started sounding out simple, familiar melodies.  The combination of years of playing, so that music is in me like grooves in a record, in addition to my now much better listening skills, meant that this sounding out of simple melodies was possible.  Definitely mentally challenging, but to me that's a good thing.  But I still wasn't reading any sheet music.  Before I got sick, I used reading glasses, and now in VT I went through a whole selection process with the help of Ann (my vision therapist) to figure out what frames felt best, because on a sensory level this was very important.  I also had to decide whether or not I wanted tinted lenses, and if so, what color.  The answer was yes, and the color a shade of light blue.

I've written this before, but it's worth repeating - you can't tell I have a vision problem by looking at my eyes.  I don't think the tint of my reading glasses is very obvious.  I've mentioned before that using glasses is now visually challenging for me.  Even if glasses have NO prescription, lenses still change the way light and images come into your eyes.  So using glasses - in my case low level reading glasses - is a vision exercise for me.  I now wear my reading glasses when I play sheet music, and want to slowly build towards playing more music, for longer periods of time.  The sheet music I am working with is musically at a level I would have played many years ago, but that's appropriate for my brain re-training. 

There are skills I need to improve in order to teach flute again, which are involved in doing other activities as well.  This means when I identify and work on certain core skills, I get more benefit from the effort.  This is really important to me; otherwise I feel like there are far too many pieces to work on, requiring too much effort, and I don't want to feel overwhelmed.  Tracking, eye gaze switching, dealing with movement - whether mine or someone else's - are all very important, and none of these is specifically a vestibular or vision issue.  My vision and vestibular systems are  interconnected, and one issue affects another.  Another overriding variable, which I think a lot of people can relate to even if they're not trying to teach an instrument, is dealing with the unexpected.  Changing up my environment, even in small ways, is important.  Being able to handle, both in terms of my vestibular system and my vision, a slight degree of surprise matters a great deal.

Before I try doing something new with my flute (and this applies to some other activities as well), I will try to visualize what I'm going to do.  Visualization, something I've talked about both in VT and FT, is a way not just to prepare for an event, but to learn something without actually doing it.  My brain - if I do the visualization well - learns from the process of visualizing; really imagining myself doing an activity, really putting myself into the situation.  It's another way to practice a new skill, change an old one that didn't work well for me - it's all part of the re-training.  I know that athletes do this, and I think musicians do it as well - running through music in their minds as a form of practice.  For me, it's not just about the actual music.  It's about where I'll be in a room, how I move, how I'm shifting my eye gaze, what kind of tracking I'll be doing, what movement or other sounds may be going on. 

I'm just starting to think about how I'll deal with my vision and vestibular disorders in terms of giving lessons.  I don't know if anyone will ask me why I took a break - however long it ends up being - from teaching.  This is something I'll need to give thought to, and when I'm closer to being ready, I suspect I'll have a better handle on how to approach the subject.  I know I don't plan to teach a real student again until I can do it without my disorders presenting problems during a lesson.  I want to be able to enjoy teaching, as opposed to feeling too much stress or anxiety.  However, one thing I'm very sure of is that I want to teach students to treat flute playing (this really applies to any instrument) like a sport.  Bodies need to be warmed up, just like instruments do.  I want to teach my students how to play the flute in the most functional way possible, so they can enjoy making music without causing trauma to their bodies.



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July 10th 2015 My 4th of July outing....

By | Published Friday, July 10, 2015

NOTE: Please cut and paste into Google Translate to listen if needed.

Fireworks are definitely not for me anymore for multiple reasons, but our community has a long tradition of celebration for Independence Day called Family Days, and I like to do something to participate.  So I go to Jewett Park - the main park facility in the center of town - and walk around with Ron and the girls, and our dog Cosmo, to see the booths.  It's like a mini Fine Arts Festival, which I attended with Ron and the girls, and Cosmo over Memorial Day weekend.  I really enjoy being able to do something for the 4th, and being able to include our dog is a real bonus - he loves it!

We talked beforehand about how to handle the logistics, because Ron and the girls like to go to the Pancake Breakfast, and then the parade which starts at noon.  Watching the parade is still not quite within my grasp, on top of walking around, and needing to have lunch.  However, parking gets very tricky the closer it gets to parade time, so Cara came up with a plan; the three of them would pick me up after breakfast, I would bring Cosmo, and walk around the park with them, and then Cosmo and I would go home.  This would leave the girls free to go watch the parade.  Ron was marching with a group for a political candidate, so he wouldn't walk around that much with us, but the girls and I enjoy the booths.  It's always a chance to get some creative jewelry.  The new challenge for me this year was the final piece of the plan - that I would walk home on my own with Cosmo.

Jewett Park was, of course, busy - there was music playing and lots of people milling around, especially since the weather had cooperated.  It was beautiful out.  Ron walked a bit, and then left to get to where the parade begins.  The girls and I did a couple loops around the Family Days booths.  The Fine Arts booths were on either side of a wide two way street, as well as a small parking lot.  Booths for Family Days are in Jewett Park, for the most part on opposite sides of a sidewalk.  Spatially, this isn't really good or bad compared to the Fine Arts booths, just different.  There are always fewer Family Days booths, so visually that's easier, because I'm simply looking at fewer displays.  Walking from one booth to another is different than walking down a sidewalk, but I tell myself it's just that - different - but it's still walking, and I take daily walks with Cosmo and Leena.

What's probably more challenging for me is actually looking at whatever is on display at each booth.  Scanning trays or wracks of jewelry, glassware, or artwork requires a lot of tracking and eye gaze switching.  There's also the visual component of how much of my periphery to pay attention to, and making quick decisions about when to makes switches.   And of course, in addition to looking at items on display, I'm interacting with Leena and Cara, and making sure I don't walk into anyone or anything.

Cosmo was having a wonderful time, and people kept asking Cara where she got her face painted.  This was a compliment, since she'd done her face - as well as Leena's - at home.  We looked at the various jewelry booths, and then went back to the ones we really liked that were within our price range.  We made our purchases, chatting a bit with the vendors - one of whom remembered me from last year - and then wandered a bit more, no longer concentrating on jewelry.  I love to see the creativity on display at art fairs, and I wonder sometimes if either of the girls will ever have a booth of their own. 

By close to 11:30 a.m. I was getting tired, and knew that, as much as I miss the parade (this is the fourth one I've missed), I'd made the right decision not to include it in my plans.  The girls walked with me (and Cosmo) to the edge of the park and thus festivities, and then across the train tracks, so that I was past the bulk of the crowd, and then said goodbye.  I started for home with Cosmo.  I don't often walk Cosmo by myself; it adds a visual component to do an entire walk with him on my own, and I like to be able to hand over the leash if I feel like I'm pushing it.  But I had wanted to bring Cosmo, and I needed to bring him home. 

Getting home from Jewett Park, the walk was a bit longer, I think, than I typically do.   Cosmo did not want to leave the girls - and everyone - behind.  As soon as he realized we were going the opposite direction, he stopped.  Thankfully, he did not dig in his heels as he occasionally does, and with a bit of coaxing, I was able to get him moving.  This scenario repeated itself whenever he saw people going towards the parade, so I opted to go down a different street.  I hadn't walked down it for a long time, so it felt a bit new to me, but there were a lot less people, so I managed to get him going.  Handling the leash was a little bit tricky; he was moving around, so I had to either turn my body around, which can be difficult from a balance perspective, or switch which hand had the leash, and which had my water bottle.  This, again, was a visual/vestibular challenge - walking and coordinating my hand movements.

I felt tired, but also determined, and I told myself I could do it, and Cosmo and I walked.  I was grateful when I knew I'd done the amount that was the extra part, and once I got home, very tired, I could say that I'd done it.  I sat for a while doing nothing; no lights on, no noises, just breathing and drinking water.  I was grateful I'd had the forethought to prepare my lunch ahead of time, so I only had to pull it out of the fridge.  I ate, played a little very easy free form on my flute, did a couple odds and ends, and then lay down.  Tired yes, but pleased that I'd succeeded at meeting my challenge.





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July 5th 2015 My Bed Bath and Beyond adventure

By | Published Sunday, July 5, 2015

NOTE: please cut and paste into Google Translate if needed.

Going to stores is something I've done very little since I got sick.  I'm fortunate that Ron can take care of errands, as long as I prepare lists so that he knows what to purchase.  Sometimes my daughters Leena and Cara run an errand together.  Stores are very difficult for me; they're noisy, busy, and often visually challenging.  Bed Bath and Beyond - BBB - is a particularly challenging store; like many stores, there's music playing and LOTS of merchandise on display, but in addition, the aisles are difficult to navigate.  So I haven't been to BBB since I got sick, but I wanted to help my older daughter Leena to prepare for college, and BBB has some good products, and especially with coupons, the prices are decent.  So I went with Leena and Cara to BBB. 

When I first walked in the door, I was instantly hit by the sensory overload - music in the air, people, and STUFF everywhere!  My first thought was "Oh my goodness, what was I thinking?!"  But I didn't want to instantly throw in the towel, so I navigated past people and carts in the entrance area, and turned around to make sure Leena and Cara had followed.  BBB stacks merchandise practically to the ceiling, so it goes a good 15 feet up.  And although there is a center aisle that seems to more or less loop around the entire store, there are islands of merchandise in the middle of this center aisle in most sections. 

Thankfully they hadn't done a re-organization since I'd last shopped there, and I figured that even if they had, if we just kept walking, we'd basically walk into the bedding section.  On the way, there was all kinds of kitchen stuff; glass ware, pots, and various other household items - I was feeling overwhelmed - total visual overload.  Then I remembered when I'd gone to our local Fine Arts Festival, and stopped trying to take EVERYTHING in, but rather had focused on my more immediate surroundings.  So I applied the same concept in the store - focusing on merchandise very nearby.  Rather than looking at all the merchandise going up the walls, I actually made a point not to, and focused on what was right around me.  This was enough visual challenge for me.  I also reminded myself that just like the Mitzvah Brunch I'd attended, I needed to sometimes expose myself to sound, and figure out how to put it in the background.  This was, in a way, another way to prepare for going to Ravinia.

Salespeople did not seem to be around the way I remembered from years back - I don't know if that's typical now at BBB or not.  We waited for a salesman to finish with a customer, and then asked about sheets to fit a college dorm bed.  He then steered us to a section where they specifically sold those items, and told me about their pack and hold service.  We found out at the end that, although he was very nice, he didn't inform us correctly about how the whole process worked.  This would have been helpful, because apparently we could have scanned our items as we went, and thus avoided pushing an overflowing shopping cart around.  I have no idea if he was new, or badly trained by the store. 

At one point, while Leena was making some choices with Cara's help, I really wanted to sit down, but that was not an option, so I opted to pace around a bit.  Sometimes moving is easier than standing still.  This is probably why people pace when talking on the phone; we are meant for movement, movement makes us more functional.  I was very aware that I was getting tired, and my ability to process all the sensory input was diminishing, but I wanted to complete the shopping.  The salesman produced a form that needed to be filled out for the pack and hold, and I simply told him I couldn't do it, and asked him to please fill it out for me.  I made an on-the-spot decision not to give an explanation; I didn't think it was necessary, and felt an explanation would take more energy than it was worth.  Fortunately, he was fine with helping me, so I still had to answer the questions, but didn't have to ask Leena or Cara to actually fill in the form.

Once we were done, we had to wait some more before he gave us a print out of our items.  There was a lawn chair on display at the front, near the Customer Service counter, and I sat down.  I knew it wasn't intended for sitting and waiting, but it was, in fact, a chair, so I decided to use it.  By the time we left, I was very ready to go, and had mixed feelings.  It's always difficult to be reminded of when I could do something more easily, and this experience was no exception.  Granted I've never enjoyed shopping, and BBB is not an easy store to deal with, but it used to be easier for me.  I was, however, proud of myself that I'd done it.  I know that last summer I probably wouldn't have even attempted going to BBB.  I hadn't walked out upon walking INTO the store, nor had I quit part of the way through.  Once we got home, although I certainly needed my rest that day, I could say that the trip was a success.                                                                                                            


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