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 November 2015

November 24th 2015 Healing time....

By | Published Tuesday, November 24, 2015

NOTE: Please copy and paste into Google Translate if needed.
Holidays fill me with mixed emotions.  I'm grateful for what I'm able to do, but I always miss out on things as well.  So as I approach the holiday season, thinking about the last month or so, I find myself thinking about finding my own peace.

I discovered a wonderful clip on YouTube of John Denver playing a song called Healing Time on Earth.  I don't think this song was ever recorded in a studio.  In the clip, he actually composes some of the song on the spot, and it's really lovely - he sings it like a loving lullaby.  There is beautiful imagery - as in all his songs - of nature, but I feel this song can be about any kind of healing.  A healing time is also inward, internal healing.  If someone's been through a trauma, they can't just move forward without giving themselves time first to heal on the inside, emotionally.  I recently listened to an article about this inner healing, and that it isn't a linear process, though I'm sure most of us wish it were!

When I got sick, I was scared and overwhelmed.  I had no idea what was going on, or what to expect, and I don't think I could really process the emotions of it all.  I've gotten feedback from people who have been sick far longer than I have, from people who just recently got sick, and those who are still trying to figure out what's wrong with them.  So experiences are all across the board.  We're all in different places with regard to our disorders, but I think we ALL need to have healing time. 

I feel like since I've been moving through my setback, I'm finally processing what happened to me.  I'm trying to be right here, now, looking around and saying "OK, this happened to me."  And sit with it a while.  Let my emotions come when they come, and not try to figure everything out about where I'm going. I want answers now, but I need to let this process, my processing, unfold.

In an effort to feel a bit more like I'm contributing in my not online life, I recently became a satellite member of my congregations' Membership Committee, acting as liaison to the Youth Education Committee of my congregations' Sunday School (a committee I've been on for years).  I told the Comm. Chair - a very nice, very dedicated woman - that I couldn't attend the meetings, but I could give ideas and talk to people.  That IS a contribution and she seemed thrilled.  I had the unsettling feeling or realization that I was going to come up with ideas for events in which I can't actually participate.

Thinking about what I can't do, I feel part of my healing, finding my peace, is in truly believing that having invisible disorders is not my fault.  No one ever talked to me about how to take care of my body as a musician.  I didn't realize I needed to advocate for myself for my MAV diagnosis, knowing what questions to ask, what info I needed - all while being sick!  I knew nothing about functional vision problems.  So here I am, realizing that I couldn't ask questions I didn't know to ask.  And realizing that being angry and sad about what happened to me makes a great deal of sense. 


So I need a healing time.  I suspect I'm not the only one living with these invisible disorders who feels this way.  Hopefully, once I've gotten through this very not linear process, I can look around to see what opportunities exist or open up for me.  I have a feeling that I will.  In the meantime, I say to myself, as I replied to an online comment the other day "...we're doing the best we can, and we need to be gentle with ourselves....".

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November 18th 2015 Pacing - what's so hard about it, and what's the good part?

By | Published Wednesday, November 18, 2015

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

I struggle with how I feel about pacing.  Pacing reminds me of my disorders; it's GOOD for everyone to pace themselves, but for me it's a MUST.  I realize that everyone has to take breaks, and some people are better about it than others.  The difference is how frequently I need to take breaks, and what I actually DO when I take a break.  I don't, for example, sit down for a cup of tea at a Starbucks, or at home for that matter, and read a book or catch up on the news either online or in a newspaper.  And I don't think most people take breaks as frequently as I do.

For me taking a break during any given day might be getting up and literally pacing around a bit, getting myself moving.  It might be switching activities - doing something less challenging than whatever I was doing.  Taking a break may also mean sitting quietly, doing some Feldenkrais movements, or relaxing breathing and doing nothing.  On a good day, my breaks of sitting quietly are anywhere from five - 15 minutes.  If I'm in need of a longer break, whether because I'm having a tough time, or because I've done something more demanding, I chill out for longer.  I try very hard to only actually lay down for my daily nap.

Regardless of what I do, pacing is a necessity for me - this has become much more clear to me recently.  Based on what I just described, pacing isn't a complicated concept for me, but it's difficult to actually make myself DO.  So I asked myself WHY it's difficult - I mean in addition to the fact that it reminds me of my disorders.

Besides the overall reminder of my disorders, pacing involves a lot of self-discipline.  For me pacing is about what I do during any given day, and making sure I take breaks.  I have to stop, even if I don't feel like I'm in an ideal place to stop whatever I'm doing.  It's aggravating, but definitely necessary. 

Pacing is also about looking at what I've got planned for a coming week, and making sure I have days that do not include an outing.  Going out is good, and I need to make sure if I stay home that I vary my activities, but going out too much isn't good. 

I have to prioritize.  What needs to get done now, or today, and what can wait?  I want to feel productive, so I have to plan.  Prioritizing also means I have to think about my responsibilities to others, what I need to do to take care of myself, and what I want to do that I actually enjoy. I may watch a video of some kind, and then depending on what I watch, take a break or do something else. 

All of this means that I feel like I'm constantly making choices.  I'm constantly thinking about the cost vs. the benefit, always thinking about trade-offs.  I have to think about what demands something puts on me, if/how it challenges me, and what I can manage.  There are always things I can't do, things that if my situation were different, I WOULD do.  At those times, I try really hard to focus on what I WAS able to do.

I've said before, my combo of disorders is unusual, and there's no rehab blueprint to follow.  Fortunately, I feel I can trust Joyce and Ann, and Dr. Margolis - who all have the experience, skills and creativity needed to help me figure things out.  Joyce pointed out that I'm doing much more at home than I could have a few months ago, and I know what she's giving me to do is specifically geared to what's going on with ME right now.  I'm very fortunate to have all of them working with me. 

I think all of these elements - self-discipline, prioritization, making choices - of my life are part of being an adult, but for me they are magnified or intensified.  I don't have much wiggle room, and that doesn't feel normal.  It's not the lifestyle of a healthy adult.  I don't like that - it's a drag.  So why bother doing it?  I mean, beyond not wanting to feel lousy, what's the positive side?

I think the "why" of it all - beyond not feeling lousy and still being able to do SOME things - is that doing what's involved in pacing is part of the key to any forward movement I want to achieve.  Pacing doesn't feel like a positive to me, but acknowledging that I need to pace myself is what allows me to do things.  And I've noticed that pacing in some ways is about being mindful, self-aware, and trying to live in the moment.  None of that is bad.         



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November 11th 2015 Grieving is part of moving forward....

By | Published Wednesday, November 11, 2015

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

I've been listening to a full John Denver concert I discovered on YouTube that goes back to 1995, two years before he died.   It's long, so I have to listen in bits, but it's a wonderful concert., mixed in with bits of an interview of his.  I'd forgotten what a talented musician he was -  singer, songwriter and performer.  It's really sad that he died young, and a bit strange that he was one year younger than I am now.

His music feels familiar, and brings me back to when I was in my 20's and listened to him a lot - I think I went to a concert of his once at the Chicago Theatre.  There's a line in one of the songs "...and the moon and the stars are the same ones I see, it's the same old sun up in the sky...".   Sitting listening to the music, I had an image of myself in my 20's, and then in 2011 before I got sick, looking at the same sun, moon and stars that I look at now, and my emotions welled up in me.

Rehab is all about making progress, but there needs to be room for mourning as well.  For grieving for the possibilities that were open to me in my 20's, and a few years ago, some of which right now are not.  Just like any other grieving process, I can't move forward if I don't let myself feel sad.   It hurts, it's painful how my life has changed.  There's a tremendous sadness and I need to let that BE.  I need to give it space and time and feel it in the present.  I don't know how else I can move on, and give room for whatever my life is now, with wherever I end up with my disorders.

So I let the tears flow, and let the feelings fill me up.  I really believe that that's how I'm able to move forward, by feeling this pain, sadness.  I'm not giving up on myself, and I know no one else is either, but these feelings are REAL and as much a part of the process of my rehab as anything else is. 

Some of how I've changed is good... I'm a better listener, there are things I understand that I didn't before, I think I have compassion and empathy - real empathy, rather than sympathy - now.  And I noticed that after I shed the tears, I actually felt peaceful.  I feel like owning the feelings, and then letting go of them, allows me to feel the possibility of moving forward with my rehab, wherever it takes me.


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November 4th 2015 Why I can relate to an astronaut on Mars....

By | Published Wednesday, November 4, 2015

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

It never occurred to me that I'd relate to an astronaut on Mars, but I did.  A lot of people have heard of the movie The Martian, starring Matt Damon, and of course it's based on the book by the same name, written by Andy Weir.  I decided to listen to the book, which fortunately was available.  There were three things in The Martian that really struck me.

1) Community
2) Problem solving
3) Attitude

Mark Watney - the main character or the Martian - had already nearly died twice, about one and a half hours into the book.  So for me, this book is not about suspense, it's about the process.  I'll admit it took a while for me to get into the book - I wasn't sure about an hour and a half into the book, if I'd keep listening.  But I knew he'd eventually make contact with NASA, so I kept going.  The technical stuff gets a bit tedious at times, in my opinion, if you're not really into math and technical stuff, but it does give you a sense of the thought process of an astronaut. I liked the fact that the actual writing style is very straight forward.  I think it fits the subject matter. 

It's wonderful how everyone at NASA pulls together once they figure out that Watney is still alive.  Each person puts in a tremendous amount of time and effort, which is what I mean by community. I really came to care not just about Watney, but about everyone.

I mentioned the time and effort everyone puts in, which brings me to the problem solving.  Mark has to solve one problem after another.  Andy Weir uses the device of Mark's daily Mars (or saul) log to have him share his thoughts, ostensibly with whomever reads the notes once they find him, after he's died.  So we get a look inside someone's problem solving thought process, at least to a degree. 

Given my own lifestyle - particularly getting past my setback - of constantly figuring out how to do things, and what to do if I encounter a problem, I could really relate to this. Granted I'm not, fortunately, in a life or death situation, but the idea is still the same. For much of the book, Mark isn't relying on anyone besides himself, his own brain to survive, which is an interesting concept.  I'm thankful that, unlike Watney, I am not alone.  However, even with my medical team, I still have to figure things out as I move through each day.  It's not like I have Joyce, Ann or Dr. Margolis following me around each day.

Now about Watney's attitude.  Watney writes in his log about a few "temper tantrums," but mainly he's very focused on what he can, and needs, to DO.  His goal is to survive until he's rescued, so it's always about what he needs to do in order to survive, and how he's going to make that happen.  He breaks every problem down into small components, which reminds me of what I need to do sometimes with my VT or FT.  If I'm having a problem, I have to break it down, and say "OK, so what's giving me a problem here?". 


I've learned, and am still learning from my setback.  How specifically did I push my boundaries too much?  What tools do I need from Joyce and Ann in order to move forward more successfully?  Fortunately Joyce and Ann both listen to me well, and have ideas to help me as I work on getting back on track.  Watney has to expend a tremendous amount of effort, but in the end that's OK.  When he succeeds with something, especially if he encountered something unexpected, if he's still alive, it's a win.  I like that - that things don't always go according to plan, that you can't always - no matter how hard you try - predict reactions - but especially when you have to deal with unexpected hurdles, getting through something difficult is a success.

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