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...

November 13th 2014 - Writing, and Understanding

Cara asked me recently why I was writing a blog.  I told her about a conversation I'd had with Leena when we came up with the name.  I told her how Leena wrote key words as we talked, and that I plan to keep the note because it's a reminder to me of that brainstorming conversation.  In the end, there are really two main reasons.  I love to write despite the challenges it now presents.  Actually, I need to write, just like I need to have music in my life.  Whether I'm writing about social issues I care about, or music, or an audio book that moves me.   The other reason is that I want to add my voice to those already working to raise awareness and understanding about invisible disorders.  I believe very strongly that each person can make a difference.  I don't ever want to see myself become silent, thinking "why bother, it doesn't matter.  I'm only one person, who's going to listen?"  There's always at least one person who will listen.

Writing is really something that has always been a part of my life, although not in a public way.   I've been writing ever since I was a teenager.  A lot of it was private journaling, which I still do, and I also wrote the occasional short story or poem.  Some students hate writing papers, but that was never me.   I did loads of writing when I was a student, and back then it was, of course, actual writing or typing on paper.  I still remember typing my Masters Degree thesis.  Writing, or rather keyboarding is challenging for me now, though not because I need ideas or inspiration. It takes time for me to write a blog because of how I need to pace myself.  But for the very reasons that writing is challenging for me, it's also good for me.  And I'm fascinated with the power of writing, both for what it does for me to put thoughts, ideas and emotions into words on paper (or computer), and with the ability to reach people. 

Vision problems are fairly common for people with vestibular disorders, since vision is a key element in the whole system of balance.  My vision problems are not particularly common, based on information I've taken in about people with vestibular disorders.  Vision disorder is a very broad term.  Everyone knows what the word vision means, though many don't know how complex the whole visual system is.  My problems, as I've mentioned in other blogs, have nothing to do with eye health.  My eyes are quite healthy.  I don't wear glasses, or walk with a cane, or in any way LOOK as if I have any vision problems.  If you heard me ask Ron to read something to me, or saw me listening to text on the computer through my headphones, you might wonder what was going on.  There are many ways I am challenged throughout the day, despite the fact that I can literally see quite clearly.

My vestibular disorder, Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines.  When people think of migraines, they think of someone in pain, and that part is true.  But migraines, which vary in severity, can also cause vertigo or disequilibrium, which is why I don't like to just say I have a migraine condition.  The term vestibular disorder is broad, because MAV is only one of many vestibular disorders, but more accurate since vestibular (which refers to the inner ear) means my equilibrium is affected.  It's still not a perfect term, since balance is really a whole system, not solely dependent on the inner ear.  But the words vestibular disorder are definitely an improvement.  There are many names of disorders and conditions that are now commonly used and familiar, and I want vestibular disorder to be like that.  There are situations when it's appropriate and necessary to tell someone I have a vestibular disorder, and I don't want it to seem like I'm speaking in a foreign language. 

I believe people are often afraid of being judged or stigmatized if they tell someone their medical problem.  That those with disorders will be treated differently, as if they've somehow BECOME their disorder.  No one IS their disorder, regardless of the problem.   You are still a person with a personality.  Using the phrase "I have health issues" is not, in my opinion, an improvement.  To me, this is a polite phrase that people use, often when they are worried about saying what is really going on, or because they don't think they will be understood. There are so many people living with problems no one can see, and people don't think about that often enough, instead judging others, presuming they know everything they need to know about a situation or person. I feel very strongly that people need to stop and think, realize there often is more to the story than meets the eye, and treat each other with compassion and understanding.   Someone might see me at an event, and not have the slightest idea that anything is wrong.  In fact, I need to get my bearings regarding the size of the room, the number of people, the noise level, the lighting, etc.  I'm fortunate that the congregation I belong to is a wonderful, supportive community.  Even so, no one really understands what it's like for me on a day to day basis living with vestibular and vision disorders.  So my writing gives glimpses or snapshots of my experiences. Those snapshots are important windows into my life, as I live with invisible disorders. 

Sharing my experiences can be difficult, or make me uncomfortable, but that's not a bad thing.  Sharing my writing makes my medical challenges more real to me because I look at and think about my situation in a different way. This process, and helping others with invisible disorders, is all good.  I don't personally believe that my vision or vestibular disorders happened for a reason, or were meant to be.  I DO believe that learning and growing from whatever I have to deal with is really important, and a much better expenditure of my energy than anger or self-pity. To say that what I've been going through, and working with hasn't changed me, had an impact on me and my life would be ridiculous.  Of course it has, some good and some bad.  But it's still NOT who I am, not my identity














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4 Responses to November 13th 2014 - Writing, and Understanding

  1. I really enjoyed reading your blog, I also have a blog maybe we can get this info out there. I have autoimmune disease of the ear. I deal with all the vestibular problems that every one else does. I am almost to the point I need cochlear implants. www.kellysautoimmunesupportgroup.com I also started a support group. Would love to keep in touch. Kelly

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    1. Hi Kelly - thank you! I took a look at your site, but I'll have to take it in later - a lot for me to look at! I'd love to keep in touch - I'm glad you commented! Tamar

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  2. Your writing is concise and clear and expresses what you have to say to us every day.

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