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...

August 30, 2019 The person I am, & what matters

By | Published Friday, August 30, 2019



I try to distinguish between my PTSD Anxiety, & the symptoms of my migraine associated vertigo and/or convergence insufficiency disorders. These disorders are all internal - I look fairly healthy to the casual observer.

It's not like there's a drawer, or pocket, or something inside of me that's for each of these disorders. But when I do something, I have a pretty good understanding now of what challenges me, so I'm getting better at figuring out what's going on. Fatigue is sometimes the main issue. Even if I don't feel really bad symptoms, the management can be very tiring.

Many people have some basic understanding of anxiety, though PTSD Anxiety, which produces physiological changes in my body, is harder to comprehend.  My other invisible disorders - the vestibular & visual - are even more difficult to understand. When someone simply respects that they don't know what's going on inside my body, yet believes that I have challenges, that's the best understanding to have.

When I think about how I spend my time, I know that I can't know what my future holds, so I have to focus on now. Be present. I can ask myself "what do I want to have to look back on at the end of the week?". Yes, just a week, not a month, certainly not a full year. A week.

We live in a high speed, high tech age when productivity is highly valued. Yet when I think about what matters most, I believe it's still about people feeling connected, valued.

Rather than thinking about productivity, what I've gotten DONE, what else is there?



I want to have learned - life feels kind of tedious without any learning

I want to have laughed

I want to have shared some good conversations

I want to have made music, to have been creative

I want to share some hugs, some smiles

I want to know I was kind, and treated with kindness

I don't want to chase after perfection - that feels like an impossible standard, and exhausting

When I think about my life with my invisible disorders, what I really want at the end of each week, is to feel a sense of worth, value in living. It feels like a shift in thinking, but in its' essence, I want to feel good about who I am, regardless of my invisible disorders.

How I feel about the person I am doesn't have to solely come from productivity.

My sense of myself - invisible disorders included - can come, really, from more than what I got done.  Noticing a beautiful flower, & sharing pictures for others to appreciate. Like the pictures of flowers I posted with this piece. Drinking in how lovely they are.

Enjoying a beautiful weather day. Sunshine. My house, with my three fluffs, also known as Cosmo, Maisy & Molly. Knowing I have friends & family who care - whether they're physically with me or not, & even if my friendship circle is very small. How I treat myself & other people - with kindness, compassion. Trying to keep my sense of humor, letting tears come - & be seen.



It's not like I just discovered kindness, compassion and human responsibility, but I have more clarity now.  I need to focus less on trying to find a spot for myself in the overwhelming, high tech world that's racing past me, on all this supposedly vital productivity, and focus more on the kind of person I am.



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August 28, 2019 shining a light on a special petition!

By | Published Wednesday, August 28, 2019




I'm proud to be part of a group of people who got together to start this petition - link at bottom of this piece - & with Balance Awareness Week - BAW - coming in September, it's time to shine a light on it again.

 The goal of this petition -
"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. "

Scroll down to click on the link, click to sign, & share!

 It took me nearly a year to get my migraine associated vertigo - MAV - diagnosis.  I saw a lot of doctors, & had a lot of tests - MAV can only be diagnosed when a bunch of other stuff is ruled out.

For some people, it takes much longer to get accurately diagnosed. The point of this petition is for doctors to be better educated so that patients can get diagnosed sooner.

Please take a look at this petition, & educate yourself a bit - chances are you know someone with a vestibular disorder. They may not know it - they may not even have ever heard the term vestibular. I know I've gotten quite an education since getting sick back in September of 2011.

After you've taken a look, please consider signing it. If you've already signed it - thank you!

Please share this - if you've already shared it, share it again! Every single signature counts. If you're on any social media, post this petition as a comment where appropriate. E-mail it to your friends & family.
https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care?
Thank you!



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August 25, 2019 Lived experience, emotional health

By | Published Sunday, August 25, 2019



I've been thinking about what the lived experience of having a chronic illness is like. The truth is there's no one answer - there's probably as many answers as there are people with chronic conditions. What I can share is my own experience.

I often feel like I'm in this in-between space. I'm not nearly as sick as I once was - for which I'm very grateful - but I'm also quite different. Different from the me pre-illness. I've said that I'm much more functional at home, & that's true - and I'm glad of that. But when I think of putting myself into some sort of "out there" experience, my limitations rear their obnoxious little heads.

No driving, limited reading, limited screen time, very restricted diet are some the come readily to mind. My ability to process info is definitely better, but I can still reach overload.

In an ideal world, I'd be able to take a writing class - I really do better in interactive environments - but these days, writing classes mean a lot of computer usage. I simply don't have the ability to do that.

Taking a class, or doing any schooling, is simply not an option for me now. Getting anywhere for even as early as 10 a.m. is very difficult for me. Getting up before 8 a.m. is difficult for me, & it takes me about 2 hours to do my whole getting ready routine, & feel like I'm into my day. This isn't a super practical time frame, but it's mine.

I still need to take a break in the early afternoon. Doing things in the evening is possible, but challenging, & not something I do a great deal of.  I don't handle socializing in crowds well, particularly after an event such as a Shabbat service. The result is that my social circle has shrunk quite a bit.

I no longer beat up on myself when I can't do something - I remind myself I didn't choose my circumstances. But it's still incredibly frustrating. I told Ron that I'd worry about how it would be when our daughters were once again gone, each for their final year of schooling, when it happened.

Now it's right around the corner, & I'll miss them. And it makes me think "So what's my own life like, living with my invisible disorders?"
Frustrating, somewhat isolated, full of effort. I chip away in therapies, but it's hard to see possibilities in the big picture sometimes. Very hard.

My therapist Christina would probably say that my emotions seem to yo yo, or ping pong or whatever image you want to use, a great deal. That's true. I guess that's part of my lived experience. Dealing with a lot of difficult feelings, & also doing my best to keep going, notice anything good.



I've realized that, because managing our household became such an incredible struggle for me after I got sick, regaining this ability took center stage. My life has become about managing the household, managing my invisible disorders, and doing my therapies.  This feels, to pardon the pun, out of balance.

I need to spend more time each week on my various creative outlets, even if they are now solitary. More piano, & more drawing comes to mind. I also need to push myself to make phone calls more frequently to friends & family. I don't know what my future holds. What I DO know is that I need to feed my emotional health more right now.



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