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 April 2016

April 27th 2016 Learning to carry loss...

By | Published Wednesday, April 27, 2016

To listen: Copy and paste into Google Translate, click the "speaker" icon.

Loss isn't only the death of a loved one; it is felt due to many different circumstances.  I've been learning a lot about loss in the process of coming to terms with my vestibular and vision disorders.  I'm not going to get to a point at which I'll be done dealing with the loss;  I will, I believe, get to a point at which my sense of loss is less intense.  I was entering my 50's when I got sick, which means I'd already done a lot of living, and I can't shut out the memories of what I used to be able to do.  I don't think that would be healthy.  Shutting out the memories would be forgetting all those years, and in any case, isn't possible.  So I need to learn, even as I do my best despite frustrations, to move forward, to carry those memories.

I listened to an article once about carrying losses with us.  The hard part is to be able to carry our losses, to HAVE them become a part of us, but not  dominate our lives.  I don't want my loss, and inherent sadness, to weigh me down.  I know I need to allow moments when I feel my grief, but I don't want those moments to disable me.  I don't want to feel like I'm lost in my emotions. I find this all, at times, easier said than done.  Loss has a way of creeping up unexpectedly. 

I attended Kol Hadash Humanistic Congregation's Seder at Bluegrass Restaurant.  Over all it was a positive experience, and I'm glad I went.  There were moments, however, when I was reminded of the loss of what my life used to be.  Like when I sat at the Seder and remembered that I wouldn't actually read the Haggadah - for that matter, I didn't want it in front of me.  It's really just a distraction.  I wouldn't read along, and sometimes I chose not to sing, because with everything I was processing, and all the noises of everyone else, I didn't want to also have the resonance of my own voice in my head.

I've also been thinking about dealing with loss as time moves on, and my younger daughter's high school graduation comes closer.  Having both daughters in college does not, in my case, mean I will be moving on professionally, or traveling.  So I feel the loss more keenly.  Kids are supposed to grow up, and move on.  And yes, I'm fully aware that I'll still be Cara's mom (just as I'm still her sister Leena's mom), that both my daughters will still need me.  But Cara in college is still change, still a loss that feels more profound for me because of my limitations.

I think that article was right.  Loss needs to be carried, needs to become a part of ourselves, like all of our life experiences.  So how do I learn to do this? I write about it, both in this blog, and in private journaling.  I talk about it with my psychologist.  Sometimes my flute playing is an outlet, while other times I try to use it as a distraction.  I listen to music.  I try to think about - and listen to - other things, issues that are not about me, to try to get outside of my own head.  In truth, I'm still figuring out the "how."  Sometimes my loss, my grief will sneak up on me, and I will need to simply feel sad.  Other times will be more expected; something will happen that I know will stir my emotions.  I'll have to take it as it comes; accept and allow myself to have difficult moments, or even days, but always, always do my best to move through my grief, keep moving. 


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April 20th 2016 Problem solving; when I can do something, or not...

By | Published Wednesday, April 20, 2016

To listen: cut and paste into Google Translate, click the "speaker" icon.

I'm big on solving problems.  It's part of my whole planning and pacing thing.  However, though I'm always working at my rehab, there are some things that, even with my rehab, I can't do right now.  Like driving.  Sometimes people have a hard time getting it that I don't drive - at all.  Especially living in the suburbs, it seems inconceivable to some.  Some people also have a hard time wrapping their heads around the fact that my reading is very limited.  They just don't understand.  In some situations I try to explain what I am able, and not able to do re the written word, or why I can't drive.  I'm very selective about what, and with whom, I discuss the details of my situation.  So this means that much of the time, I leave it alone.  I don't talk with people about my problem solving, or my "workarounds." 

Some activities are a combination of figuring out solutions once I've identified the problem, and accepting my current limitations.  We live in an INCREDIBLY visual world, and the internet is a main factor in this.  People have smart phones, tablets, laptops, etc., all of which give them access to the global internet world.  If you are not connected online, you are basically out of the loop.  When your social life depends, to a degree, on online interaction (as mine does), small doses of the internet can be hard to manage. It's very easy to fall into over doing it. 

Management is, however, a necessity.  How much I do of something depends on a variety of factors: how I'm feeling, if it's morning or afternoon, what else I'm hoping to do, and how demanding/challenging I think the thing or event will be for me.  Computer usage is a trigger for me for a number of reasons; eye gaze switching, possible movement of whatever I'm watching, and multi-tasking to name a few.  Small doses are a necessity for me.  I have to "mix it up."  Get up and do something else, something that is very different visually, even if it's only for ten minutes.  I know what my triggers are, which helps me in the problem solving department.  If I'm having trouble, I may have to stop and think "OK, what did I do that was a problem for me?".  

Once I figure it out, then I have to figure out if there's something I can DO about it.  Sometimes there is; I always try to have phone conversations on our landline, because the sound/speaker on my cell phone is a problem for me if I use it for more than a brief call.  This is due to my MAV sound sensitivity.  If I want to follow an online thread, I cut and paste all of it into Google Translate.  It's a bit odd to hear everything, including names and times read to me in addition to the comments, but it's what I do.  If I'm going to listen to something on my mini iPad, I need to do it early enough in the day that the visual element of touching the screen isn't a problem.  I can listen to my special Talking Books audio player in the evening because it's easier to use.  However, even with my ongoing rehab work, sometimes there's nothing I can do.  I have to say to myself "OK, this isn't working, the cost (how I'll feel as a result) isn't worth it." 


My problem solving often ties into, or goes back to my planning and pacing, "Where do I fit this activity in?",  "How often do I do this?", "Well, I can try this, and see if it works.".  It would take too much energy to explain all of this, and as important as it is for me, as much as it's part of my day, it's not something for an ordinary conversation.  Certainly not with someone who doesn't deal with similar issues.  So most of the time, unless I'm communicating with someone who I think cares to listen, and may understand, I leave it alone.  But I know inside myself, that I've learned SO much about problem solving; how to approach problems, think about them, break them down, and move on.  My MAV and vision disorders have sharpened my problem solving skills, made me something of an expert at figuring things out.

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April 12th 2016 Gathering info, gearing up for Balance Awareness Week ...

By | Published Tuesday, April 12, 2016

To listen: Copy and paste into Google Translate, click the "speaker" icon.

The Vestibular Disorders Association - VEDA - is starting to gear up for Balance Awareness Week in September.  As most of you know, I'm on the patient advisory board, known as the Ambassadors - David Morrill is our terrific Chairperson.  We want this BAW to be really effective in helping to raise awareness, and educate the public about these invisible disorders.  We also want to know what YOU - patients or family/friends of patients - are looking for from BAW. 

So I'm asking my readers for input; what you'd look at/click through, and what you'd be likely to SHARE.

I'll go first :-) 

Articles - I listen to articles that are either informative (i.e. new research, explanatory), or realistic but also encouraging.  Preferably the info is concise; bullet points are good, as are headings (especially if it's info rather than a personal story).  It's great when I'm learning info I couldn't otherwise easily access, especially since due to my vision disorder, I can't do much research on my own. 

I've learned a fair amount re vision, which seems to be more straightforward than MAV, and I'm always happy to share.  Prior to my disorder, I knew and understood very little about vision, so I like being able to pass on info about the connection between vision and balance. I think there's still a lot that isn't known or understood re MAV, but I'd like to know about whatever info IS available.   I'd love to be able to share more about this with my readers. 

Videos - I'm also always happy to find well-done, informative videos - I may not actually WATCH everything in a video, but I learn from listening.  Videos are definitely something to share.  Videos with music that are motivating and/or inspiring are always good.

Info graphics - I'm selective re info graphics - I want well presented info, that isn't visually confusing.  I would definitely share good ones.

Other patients - I like to hear from others who suffer from vestibular disorders, especially if they have a combo Dx like me.  I want to know practical, problem solving approaches/ways they manage their lives.

I'm not too interested in hearing from celebrities, unless they're really forthcoming and honest.  A well informed doctor can be helpful.

Support - Finally, getting support from people who understand is important.  Even though all these disorders/combos of disorders have individual twists and turns to them, everyone seems to have a basic understanding.  Many of us deal with, or have dealt with, similar issues. 

Now it's your turn -

What is your preferred format -
Videos?
Info graphics?
Articles?
Who do you want to hear from - medical profs - and if yes to this, what kind?

Do you get something out of hearing the story of someone with an illness, what happened to them, and how they are coping? Do you need the story to be one you can relate to, or does that not matter? 

Do you really mainly want info, and if so, what kind?

If any of you are not comfortable, for any reason, sharing answers as a comment, please private message Visible Person, Invisible Problem. 

SHARING - Last but definitely NOT least, what are you most likely to SHARE, to promote? 

In addition to helping people who have these invisible disorders, the purpose of BAW is to raise awareness and get info out to the public.  Have any of you shared anything and gotten good feedback?  Do you feel people are receptive? 


I look forward to getting feedback, as I plan to share it with the folks at VEDA.  You'll be helping to make BAW a success!  Thank you!!

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April 5th, 2016 Taking stock; improvements, paying attention to the positive....

By | Published Tuesday, April 5, 2016

To listen: copy and paste into Google Translate, click the "speaker" icon

I've been feeling the weight of my invisible disorders - MAV and vision - lately, and wishing I could improve, make progress just a bit faster.   As important as it is for me to focus on the positive, sometimes it's really hard to DO that.  I decided, in light of this, that it would be a good time to remind myself of some things I can do, any improvements I've made.  The last time I did this was at the end of July, and eight months is enough time to see what's going on.

Some of the items on this list may surprise people - surprise them that I'd put them on this list - but I'm doing it because I want people to understand some of the challenges, and ways in which I mark progress.

Finally, some of what I list here are areas I am still working on, but I am trying to focus on improvements or accomplishments.

1) I recovered from a set-back... this definitely counts as an accomplishment.

2) I'm doing more therapy at home. 

Some of the exercises were begun as a result of my set-back, to help me to recover, but regardless of the reason, it's good.  I keep doing them in order to continue to improve, and on the theory that my efforts will help prevent another significant setback.

3) When I do something challenging, sometimes my recovery is faster - that's positive.

4) I can turn my head from side to side more easily, and in general, head movements are getting a bit easier.

5) I can sit for longer periods of time with my eyes closed.

6) I am back to playing my flute more than once a day.

7) I can listen to more music, more songs.

8) I am able to do some private messaging on FB.

9) I am slowly improving with some multitasking - for example, washing a pot while waiting for something to cook on the stove.

10) I wear my glasses more while on the computer.

I noted recently when I was feeling tense, that acknowledging the tension was what allowed me to move through it.  Some of my tension comes, I think, from wanting to do things, meet my responsibilities, and basically ignore my vision and MAV disorders.  Wanting doesn't make it so, and ignoring my reality doesn't work.  Ultimately there's a balance in allowing myself to feel, giving space for my emotions, but not completely succumbing to my sadness and frustration.  Recognizing the negatives is necessary; what I can't do, or feeling badly because I think I'm letting someone down by not being able to do something.  But recognizing anything positive is necessary as well. 

So I took a look at the calendar for the month of April.  Due to the holiday of Passover, I've got a couple bigger events - our congregation's annual Passover Seder, my mother's Passover Seder - to attend.  I will also have the opportunity to see my younger daughter's artwork on display at one of our park district facilities.  I'm going to a Youth Education Comm. meeting, which will also be attended by members of the Membership Comm.  All of these events are opportunities for social connections, and the YEC meeting is a chance to contribute.  I'll also hopefully have a chance to talk to a couple friends by phone. 

Finally, I'll listen to music every day, play my flute, write, listen to audio material, and enjoy walking our dog in lovely weather (when we get it).  My life has changed radically, and sometimes it's not the big picture (events like a Seder), but rather the little ones, as I keep moving through each day, that matter. 




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