| Visible Person, Invisible Problem

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

By VisiblePersonInvisibleproblem | 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.

July 5th 2015 My Bed Bath and Beyond adventure

By VisiblePersonInvisibleproblem | 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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June 30th 2015 Feldenkrais & Vision Therapies, & the people I work with....

By VisiblePersonInvisibleproblem | Published Tuesday, June 30, 2015

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

Feldenkrais and Vision Therapies - my rehab - are a big part of my life. I've said that before, but it's worth repeating, because I want people to understand that FT and VT are so integral to my life. Based on the feedback I've gotten, people seem to be interested and curious about my therapies. So here's a bit more of my experience, and a little about the people I work with.

My Feldenkrais Practitioner, Joyce, is a Guild Certified Feldenkrais Practitioner® (GCFP), who trained with Anat Baniel, a Registered and Licensed Occupational Therapist. I've never met Anat, but I know that Joyce has regular contact with her. As I've said before, Feldenkrais therapy was invented by a man named Feldenkrais. There is an institute in New York - this is a link to their site - http://feldenkraisinstitute.com/, and other info online for those who want to learn more.

For my vision therapy, I work with Ann, who is a Certified Vision Therapist. She is supervised by Dr. Neil Margolis, a Developmental Optometrist. Here's some of a basic explanation from Answer.com about Developmental Optometrists, who are considered specialists in the field of eye care:

"... emphasizes proper visual development of their patients. Skills that can be underdeveloped include eye focusing skills, tracking skills, and binocularity. Conditions such as amblyopia, or lazy eye, convergence insufficiency, and eye focusing troubles can be addressed with vision therapy....These optometrists will usually join - and can do additional training and education through - an organization known as the College of Optometrist in Vision Development, or COVD. An optometrist who does extra research, publishes case studies, and passes rigorous testing can become a fellow of the COVD. Hence the title of FCOVD is derived from this process...."

Dr. Margolis is a fellow of the COVD, and does continuing education for himself, as well as speaking in various forums to provide info about eye health and VT. There are others in this specialized field who spend time doing this; doing VT is a specialty that people need to know about because it can have such dramatic consequences for children, as well as adults. I wrote in "More of my story..." about what I believe happened to me, but there are also adults (and children) who suffer Traumatic Brain Injury from events like strokes, concussions, etc. who benefit from VT. What Dr. M. does is in addition to his actual practice - I'm fortunate that he is so dedicated to his work and his patients! I see Dr. Margolis for Progress Report consultations, which give me a chance to communicate directly with him, and he also communicates regularly with Ann.

I've also said this before, but it's worth repeating - rehab is hard work. I have to put in effort, and so do the people who work with me. I also have to do homework in the form of exercises I do at home. It was a very positive step for me when I was able to handle doing these exercises; for about the first year and a half of VT, homework was very difficult for me. I am also able to do more FT at home. People who are familiar with the term "vestibular rehab therapy (VRT)" tend to think of exercises done with a PT. For me, FT and VT are my vestibular rehab therapy, but include additional components. Because I do two different, but complementary therapies, I think my therapy is more comprehensive.

I also think doing VT and FT is very different than recovering from surgery. I've had to recover from surgery, and although it's also hard work, the rehab I am doing now has a very different feel to it. I believe that therapy that retrains your brain, which is what I'm doing, is a different experience than getting a joint moving again, or working through scar tissue, both of which I've had to do.

My therapies both work for me in small steps. An example of this that everyone is familiar with is reading. I am relearning how to do this, and probably learning better than when I was a child. It's an unusual experience to learn to track properly, and actually process the words. There are steps that for now are conscious, that eventually will not be. The same is true for reading sheet music again, or walking in new environments. If I go someplace new, one that my body doesn't know, it feels different on a sensory, vestibular, visual level than being someplace familiar. All of me has to work harder. So I take very small steps, and each step builds on itself.

Sometimes I don't feel good after doing something. I might feel tired, dizzy or off-balance, somewhat drained, or some combination of these. But I want to push through, because I know that my tolerance for doing things will not increase unless I push through. The tricky part is that if I go too far, and end up on overload, that doesn't help me. So I'm always planning, trying to gage my pace, figuring out about putting my puzzle pieces together. This is, I believe, one of the hardest things about rehab - figuring that out. It's also one of the reasons that I think Dr. M., Ann and Joyce are so good - because they work with me so well, and listen so well to keep on putting the pieces together. This mental processing of and about rehab is one of the reasons I get tired, sometimes drained. And one of my goals - one that Dr. M., Ann, and Joyce share with me - is that over time I DON'T have to think about things as much. I won't have to plan as much. I do see improvement - that I sometimes can move from one activity to another without quite so much forethought.

Though much of FT and VT are about small increments, I do sometimes take on bigger challenges. I thought a lot about whether or not to go to Ravinia Festival this year with my family. It's a very challenging venue for me; lots of sound and people and movement. But I went last year and I decided that if I didn't go this summer because I didn't want to deal with all the challenges, I was giving in to my disorders. And not giving myself a chance to see if it's any easier, or at least no more difficult than last year. So we are going to go, and I think about what I can do to prepare. Doing other activities, going to other events - like attending my congregation's Mitzvah Brunch - helps me. It's easier to do something really big if I've exposed myself to situations with more stimulation, movement, visual challenges, etc.

VT and FT are about therapeutic exercises AND daily activities, many of which incorporate FT and VT. I do specific FT or VT exercises that work on a particular element, push me, make my systems work, retrain my brain - my circuitry if you will - in a way that daily activities do not. I can feel the difference between what I'm basically used to, vs. what challenges me. That said, based on what I've learned, and conversations I've had with Dr. M., Ann, and Joyce, there are also things I can do on my own that function as exercises as well. Many things throughout my day involve my vision, my vestibular system, my whole sensory system, so in some ways my life is therapy for me. For example, paying attention to how I move, breathe, switch my eye gaze, use my glasses (both reading and sunglasses) - these are all pieces I can build into my day.

I'm not trying to do rehab eight hours a day, but it is at least a part time job for me, and affects many, many activities. I think this is because balance is truly such a fundamental part of who we are, but one we don't think about unless we have a problem. Sometimes I wish that I didn't have to do so much therapy, and that the process of brain re-training was faster. But most of the time I don't dwell on that. I'm very grateful to live in a time when there is so much known about this kind of rehab. And I've become an expert at being patient. I've accepted that therapy is hard work, but work that I have to do.

Having my invisible disorders, and doing my rehab, I've also learned some more general coping skills. Although I'm still independent in thought - and probably more outspoken than I used to be - I don't have the mobile independence I once did, but this doesn't bother me the way it once did. I've gotten used to planning my transportation needs, and I'm better at asking for help, and letting my needs be known, while still trying to be somewhat flexible. I'm constantly learning not to sweat the small stuff. I do my best to say "OK, let it go, this isn't worth stressing over." I try hard to stay more present-focused, taking one day, one step at a time. I also try not to focus on what others can or can't do, but rather on what *I* can do to make progress.

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

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

July 5th 2015 My Bed Bath and Beyond adventure

June 30th 2015 Feldenkrais & Vision Therapies, & the people I work with....

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