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 September 2019

September 27, 2019 Saying goodbye, so I can move on

By | Published Friday, September 27, 2019


 


When a loved one dies, regardless of your faith, there are rituals that help those who live on, to say goodbye. If you become sick with a chronic illness, or disorder, there's a different path. You go to doctors - often a lot of doctors - and have tests. Hopefully you get one or more diagnoses, and find out if there's any available treatment. 

Hopefully, there is progress, improvement. But often, you are never fully better, fully recovered. There's no ritual for this, the slow - or perhaps not so slow - realization that though you are still you, your life - and in a way you - are changed.

I've gone through the anger, and plenty of frustration about things not working, not going according to plan. My life as a musician was full prior to my illness. I've felt very sad, but I've never really said goodbye to that part of my life. It's always been wistful - the question of what might still be possible hanging in the air. And maybe someday something will change, but eight years in, I feel like I need to say goodbye.



I've written about acceptance, and I realized that acceptance can only happen when you - I - let myself grieve, and say goodbye. That I can still play my flute a few minutes a day is valuable, but it's so much less than what I once could do. So I took out a plastic bin that has some of my sheet music, uncovered it, and let myself sob. Let all the pain of loss pour out.



I took out the first real solo piece I ever played - minuet and dance of the blessed spirits. It's a beautiful piece, and I was so proud of being able to play it, back in high school. I loved my flute teacher, and had many, many wonderful experiences with her - Mrs. Levitin.

Then I opened a plastic drawer, and thumbed through more music. When you begin playing at age nine, and play until age 50, there's a lot of music, a lot of memories. The songbook for "Oklahoma!" caught my eye, as did "My Fair Lady". I used to buy songbooks, and play the vocal line - often easier to find than the sheet music for flute. 

There's so much more - music I played in band as a kid, music I played with the flute choir (Lakeside Flutes) I helped to create, music I played in informal gatherings with other musicians, even some from a community band I played in.



Then I thought about what I'm trying to move towards, and decided to take a picture of the piano we have down in our basement, which I sit at, and play for a few minutes sometimes. I never formally learned to play the piano, so I apply my sense of sound, and just make music. Then I took a picture of part of the art table - a box of pencils, my craypas, some paper.



It hurts to have to say goodbye, but I want to be able to move on. I need to be able to let go, and I believe this is my way, my ritual. Taking out my music, like pictures of a loved one, and letting myself feel. This moves me towards acceptance of what is, and whatever lies ahead.



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September 21, 2019 A conversation with myself - self compassion, acceptance

By | Published Saturday, September 21, 2019



I've written a lot more about vision therapy, than Feldenkrais, but Feldenkrais is really important. Feldenkrais - awareness through movement - was developed by Moshe Feldenkrais. A brilliant, fascinating man.  I'm fortunate to work with the practitioner whose first teacher actually knew Mr. Feldenkrais.

Another thing about Feldenkrais that's helpful, in addition to the obvious help with my balance, is that Joyce is very present focused. This is not to say that we don't ever discuss goals - I've talked with her about becoming more independent, doing more for myself, and she's always quick to cheer me on. But there's also a sense of "what do I have going for me NOW?".

This perspective is something I really struggle with. I thought about it even in terms of the last piece I posted, in which I talked about my reading. I know I should be cheering myself on - that I re-approached reading a book, brought one to vision therapy. But if I'm going to be honest, part of me also thinks "God, this is pathetic, just one stinking paragraph?! Really?!"

One reason I can write this blog is that reading my own writing is easier, because comprehension is much easier.  I have the words in my head before they're in front of me, and then I know what I have written. How much of someone else's words I'll be able to read someday? I have no idea. When I have some idea of what's being said - whether because someone's already told me, or because I know what the topic is - that helps.

Feeling frustrated and disappointed about my limitations is very hard. And then I remind myself of two things -

Self compassion, and acceptance.

Whenever I try to do something that is now challenging, difficult for me, I need be proud of myself for trying.  It's so unhelpful when I only feel bad about not being able to do as much as I would like. As much as I used to be able to do.

There's so often a feeling that something's missing, that I should be doing more. That things should be better. 


But when do I step back, and say, as if I'm my own best friend "hey, look what you've done -

you've reached out to friends more,

you're going to the DORS orientation - Christina's right, you would never have done that last year,

you've checked out some volunteer opportunities on your own

you and Ron are following through on some possible home projects, to make actual decisions

you're going to meet with two people you've never met before, at the library, to talk about some kind of possible writing coaching one of them may be willing to do with you

You're managing your household - that's a LOT by the way, and you couldn't do nearly as much as you do now, even two years ago!

Come on Tamar, you didn't ask for your disorders - I mean, really, who the hell would?! - and look what you're doing!"



"Maybe your life will get better than it is now, maybe not - you don't know... you don't know what the future holds... but give yourself credit for where you've gotten yourself! And let yourself enjoy what you have, right now"


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September 20, 2019 My treatment, my journey, my space

By | Published Friday, September 20, 2019




It's mid-September. I know that by this time, eight years ago, I'd gotten sick. I find myself thinking about what happened to me, and what's happened since then - this whole journey I've been on. And continue to travel. Then I end up thinking about all the therapies I do - Feldenkrais, vision, and cognitive behavioral. I wonder - again - where I'm going with my treatment, my journey.

I've checked out what I can think of on my own about volunteering, and I'm going to an orientation in three weeks for the Department of rehabilitative services  - DORS.  I have to attend the orientation in order to be assigned to caseworker. I don't know if anything will come of meeting with a caseworker, but it feels - for now at least, like the last idea to pursue.

I'm reaching out more, by phone, to connect with friends. I feel good about that. And I tried something recently that I haven't for nearly eight years - I took a book off of one of our bookshelves. This might seem like a small action, but the last time - about a month into my illness - I took a book down, and attempted reading, it went very badly. That experience ended up compounding the PTSD I had developed from the night I got sick.

This time I know what book I took down. One of the Laura Ingalls Wilder Little House books. I've got the complete series, which means not just having the little house books, but also On the Way Home, West from Home, and A Little House Sampler. These last three books are diary entries, reminiscences, and letters to her husband, Almanzo. All three were written before the Little House series.

I looked through On the Way Home, looking at the photos, reading a few captions. Very difficult because the font is so small. Frustrated, I took out the last series book, The First Four Years, and - surprise - the font is larger, the lines of text space further apart. It's the only book in the series with this font and spacing. My first reaction after looking at On the Way Home was "reading's just not ever going to be in the cards for me!". But then I thought, "well, what about the First Four Years? - is that within my reach?".

I took The First Four Years with me to vision therapy. Ann and I talked about the many components of reading - font size, color of paper, size of page, color of print, ability to literally see, knowing basic words on sight (the, it, that, she, etc.), comprehension, vocabulary.  I'm probably leaving something out.


Ann showed me how to break the reading down into very small bites, blocking some of the text. Ann said breaking any reading task down into really small, manageable bits is really important because she sees me tighten, tense up when my PTSD is triggered. Ann was excited that I brought the book in, with what's happening in my treatment, and doesn't want my PTSD to take over. The purple post-it note is my book mark, combining what I read in vision therapy, and what I read today.

I'm pretty sure that skills I work on to help with this whole complex thing called reading, impact other areas as well. It's SO frustrating, dealing with the impact of my illness, but what happened to me happened. I can't change what happened. So I've GOT to make the choice to take whatever baby steps I can.

I told Ann I'd listened to an article about syntonic light therapy, and what it said about standard treatment.  I also told her that I remembered Dr. Margolis had said, that the plus side of my sensitivity is that a little bit of treatment can have a big impact on me.  So I asked her if I should pay attention to what it said in the article, regarding standard treatment, in terms of my own treatment. She said "no, that's irrelevant, you're not a cookbook."

There's no exact recipe for my treatment plan. I need to find what works for me, and see where that takes me. But I can't get so lost, or preoccupied, in that looking, that I stop noticing where I am, and what's good about that place, that space that I'm in.



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September 13, 2019 A conscious choice - it matters

By | Published Friday, September 13, 2019



Choice. Choose what to focus on. It's a simple idea, that's taken me quite a while to absorb.  I had the pleasure of speaking again with my friend David, the guy who's the chair of the ambassadors – the patient advisory board – of the vestibular disorders Association.  Also known as VeDA. I love these flamingos - these are on shirts I own.



Every time I talk to David, I'm reminded and impressed by his positive attitude.  David, a former EMT, suffered a brainstem stroke five or six years ago.  He had to relearn to walk and talk (the talking was more about processing, than how to say words). He's now working part time at WalMart. He has moved past anger and bitterness - he is so genuinely positive!

Now, in addition to his part time job, David is involved as a volunteer, advocating for positive change.  That's why he's  part of the same group as me, that started the vestibular petition (see the link below).  One more year, and this petition will hopefully go to the World Health Organization.  With as many signatures as we can get.

Talking to him reminded me that all of us with vestibular disorders - and maybe some other health issues thrown in to make things more interesting - have a choice every day. I can choose to focus on all of my challenges, my frustrations etc.  Or I can choose to focus on what is good in my life.

Here's a picture of me not smiling. Here's one of me smiling.


Looking at the two pictures next to each other, I was really struck by the difference a smile makes. Of course, it needs to be a real smile - the kind that uses your whole face. We've all heard it "laughter is the best medicine," but smiles can really make a difference as well.

Smiling is, I believe, part of the choosing what to focus on thing. But there are days when smiling really doesn't feel so natural. Then it takes a conscious choice. Until I get good at this choosing thing - and maybe even after I'm good at it - I have to make that conscious choice. Because there WILL always be challenges and frustrations.  All of that, and the grief over loss, will always be there to a degree.


So I have to choose, every day, between focusing on all that mess, or finding something good. It's not about blotting out the tough stuff, it's about moving past it, making that choice to focus on the positive. It's going to take some practice for this to feel authentic. I'm going to have to do concrete things, especially in the beginning, to make this stick.

I need to greet each day, not with
"well, here I go again, another day..." but rather,

"I'm fortunate to be so much better than I used to be... what am I going to do with this day I'm starting?"

Here's the petition link -  

https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care?

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September 10, 2019 Balance Awareness Week is coming 9/15 - 9/21

By | Published Tuesday, September 10, 2019



Balance Awareness Week is next week - September 15th - 21st, 2019 -

How you can help -

1) share posts from the Vestibular Disorders Association Facebook page

2) go to VeDA's website - www.vestibular.org - & learn about balance

3) make a donation to VeDA if you can

4) share this piece

5) Sign the petition - here's the basic info, & there's a link below - click, sign, & share! Every single signature counts - Thank you!

Goal 
We aim to give vestibular / neurovestibular patients a better chance for swift and accurate diagnosis, a cure or appropriate treatment. We ask for a worldwide agreement on education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions / disorders. 

Outcomes
As well as revolutionising health care for patients with primary vestibular / neurovestibular conditions this approach will add to the cadre of doctors who are able to support patients with a wide variety of conditions that can have an impact on balance, including Vision Disorders, Parkinson’s, Multiple Sclerosis, Cerebral Palsy, Hyperventilation, Neurofibromatosis etc etc.

>> Let's join forces to realize this together. 
You can make the difference. Sign this petition.
Ask family and friends to join this cause.
Yes we can!


https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care?


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September 7, 2019 What I promise myself - acceptance, & more

By | Published Saturday, September 7, 2019


I was telling Ann, my vision therapist, about various jobs I've had since getting married -
1) first with our Chamber of Commerce, then
2) an online organizing website (I learned, but made no money),
then
3) as an independent contractor for a company that tied the housing market to the Chamber (this went well until the housing market went very badly),
& finally
4)giving private flute lessons ( I discovered I enjoyed this after teaching both our daughters).

Interwoven throughout, I was a stay-at-home mom.  But my daughters are now young adults. Ann commented that I've reinvented myself a number of times. I'd never thought of it that way. And now, with both my daughters embarking on their final year of formal education (the learning never ends), I'm asking questions.

I told Christina that the possibility that where I'm at now is basically it, terrified me.  I don't remember if she asked me, but I asked myself later what it was that terrified me. Feeling tremendous sadness? Frustration? Anger? Loneliness? If I'm afraid of all of that, that would mean I'm afraid of being human.

None of those feelings is easy to feel, and maybe I - maybe a lot of us - get scared that if we let ourselves feel these emotions, we'll disappear into them. We won't stop feeling that way. We won't ever feel anything good again.

Sometimes being human isn't easy - sometimes it's damn hard. But at 58 years old, and counting, I know - yes, I truly know - that I've gotten through every single one of my worst, hardest moments, my toughest days.

I hate what happened to me eight years ago. I don't think I'll ever be one of those people who says that getting sick was actually a gift of some kind, that it was meant to be. But I can't change that it happened.  I have disabilities. I'm so much better than I was, but I have disabilities, and I don't think that's going to change.


So here's what I promise myself.

To feel - I'll let myself feel. I will feel joy, love, gratitude, and all the difficult emotions as well.

To have self compassion - I don't want to feel sorry for myself, nor do I want anyone else to.  I want to feel self compassion, and I ask for empathy.

To find meaning - I will fill my time, beyond meeting my responsibilities as best I can, with what has meaning for me.  This can be as simple as cuddling a pet, hugging Ron, reminding myself how far I've come. I don't want to fill my time just for the sake of filling time.  Disabled or not, once responsibilities are met, none of us should be just filling time.  Life is too short for that.

To grow - I will try to always grow as a human being. That doesn't mean being in my therapies forever - that's not the goal of any therapy.

To find acceptance within myself - I will try to accept the truth of my invisible disorders, so that I can move forward to get the most out of my life that is possible. This means most of the time focusing on the positive, on what I can do, on what is good, rather than all my various challenges.

To notice & nurture - I need and want to work on noticing not what brings me down, but what helps me, nurtures the kind of person I choose to be.

To do my best to live in the moment, take things one day at a time.


I listened to the Epilogue, written by Joshua Williams, for The Unwinding of a Miracle. His wife died of cancer, and this is what he said -
"It is in the acceptance of truth that real peace & wisdom come. It is in the acceptance of truth that real living begins.  Conversely, avoidance of truth is the denial of life."
I think what Joshua Williams means, and what I believe, is that acceptance opens up space to breathe, move forward, to see what my life still has to offer. Even with disabilities, I deserve that. Everyone with disabilities does.


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