Archive for November 2014

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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.

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.

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.

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.

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.

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. 

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.

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.

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.... 

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?

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.

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.