September 9, 2020 Nine years out...

  Nine years ago this month, I got sick. I don't like to talk in any great detail about the night I got sick, because my PTSD can stil...

June 23, 2021 - It takes practice - focusing on the positive


Really paying attention to the positive – regardless of how large or small – takes practice. Some days are easier than others, but if I can’t do it one day, that doesn’t mean I throw in the towel. It means keep trying.


I have limitations, disabilities, challenges – I really don’t know which word/meaning makes the most sense. I don’t think it matters. What I DO know is that if I focus on all of that, it’s overwhelming. Immobilizing. Really bad for me.


It’s incredibly easy to think of something I miss, or would like to be able to do still/again, and end up feeling really sad, even angry. I know it’s important to let myself feel the difficulties, but it’s also incredibly important to make myself notice the positive.


And yes, sometimes – more frequently than I’d like – I DO have to push myself to pay attention to, appreciate what’s good.


So, here’s a few examples (and I’ll be posting more examples on my Visible Person, Invisible Problem Facebook page):


Being functional at home – this is an easy one for me to overlook, but it’s really important. Taking care of myself, and running our household matters a great deal. A huge accomplishment.


Playing my flute – this is a really good example of needing to focus on the playing I’m currently able to do, rather than what I’ve lost.


Taking walks – I can actually take walks by myself now, if I have to. This is actually a really major accomplishment for me.


Well, this is a good start for me. I’m going to practice this, so I can get my brain into a different groove, as much as possible. Hopefully, with practice, I’ll achieve this goal.


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March 29, 2021 - Focus on - fully embrace - what I CAN do


I have limitations because of my invisible disorders, and those limitations mean that I am disabled. Some people seem afraid to use that word – “disabled” – but it’s my truth. It is only in accepting this truth, this reality, that I can embrace what I AM able to do. I still have abilities and interests, and both – my disabilities AND my abilities – make up “me” now.

So, what are some of my abilities now?


What my reading (near vision) glasses enable me to do –

I’m grateful that I can read to some degree, and my reading glasses – which have prism as part of the prescription – are hugely helpful. As limited as my reading is, I can’t imagine not being able to read at ALL. My reading glasses also, of course, enable me to write. And enable me to watch videos.


Make music –

I’ve talked about my flute, but I also do a bit of piano keyboard. We have an electric, full scale piano keyboard. I never learned to play - I can’t read Bass Clef – but I’m slowly getting more acquainted with making music on our piano. I’ve experimented with very simple chords, and occasionally using both hands.


Grow houseplants-

My mother loved gardening – it was a passion of hers. I’m nowhere near as knowledgeable as she was, but I do seem to have a green thumb for houseplants. I keep it simple – sunlight, and the right amount of water, and then get around to re-potting when needed. Here’s a few of them.


Outdoor garden -

I love our garden, and delight in seeing things beginning to grow in the Spring. Springtime has always been my favorite season. I also love to spot flowers when my husband Ron and I are out for our daily afternoon walk with our dog. When I’m close enough, I take pictures of the flowers.

Last summer I sent them to family members, including my mom. She loved getting them, and I know she’d be happy that I’m still taking pictures of flowers. I’ll always think of her when I’m taking pleasure in nature, and I know that would make her happy.

Focus on abilities -

So, these are some of the things I CAN do. The life I’m trying to embrace. I want, as much as I can, to be present, and to treasure each and every moment of goodness.


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March 15, 2021 - Snapshots of my lived experience


Keep going - I’ve had a hard time writing lately. My mom died on Oct. 27th, 2020, and she ALWAYS read my posts. Often, she commented. So, knowing that she will no longer read, and there will be no feedback from her is difficult for me. But I know that she’d want me to continue writing. In fact, she’d be sad if I didn’t. So, I need to keep going.

Raise awareness - One of the main reasons I’ve written in the past, has been to raise awareness about my invisible disorders. So, I’ve also thought about how I can best continue to spread awareness about my invisible disorders, which include migraine associated vertigo (MAV), a vision disorder, PTSD from the sudden onset of my illness, and irritable bowel syndrome (a common companion with migraine disorders).

Yes, it’s all part of my package, and there still aren’t a lot of people writing about these, in particular the MAV and vision disorder. Some people don’t have the ability to write about their journey, or simply choose not to, which is OK. I’ve never shared everything, but rather what I consider to be snapshots of my experience.

Write about my experience - I’ve explored and thought about options, taking into account my limitations. I’ve come to the conclusion that truly, as before, my best path still is to share VeDA (vestibular disorders Association) Facebook posts occasionally, and to share my own story.


My writing used to focus on rehabilitation/therapy. That will no longer be the case. I currently do Feldenkrais - every other week by Zoom. This is challenging for me, and I’m still working out how it works best for me, and what I want to accomplish with this therapy.

I talk to my cognitive behavioral therapy (CBT) specialist monthly, and it’s much more focused on what my life looks like now, and dealing with my mother’s death. Just as my CBT is now focused on what my life looks like now, so too will my writing.

Life does not revolve around therapy - So, what DOES my life look like now, living with my invisible disorders, but trying not to let them be the whole picture? What does my life look like with some therapy, but after all these years, not having rehabilitation/therapy as the focal point? Therapy of any kind is always a means to an end, not an end in and of itself.


My music - Doing my best to focus on what I CAN do, what is positive in my life. One of the real positives in recent weeks has been playing my flute over the phone for my dad. We both share a love of music, though he does not play an instrument. He really enjoys it, and so do I. I realized I really miss playing for others, and getting feedback is enjoyable, and very different than a music teacher.

Perspective - This is where I want to try to focus going forward – acknowledging the challenges, and also holding on to the positives. Knowing that I’m doing the best I can with a difficult situation. My life is very different - *I* am different than I was prior to getting sick. I am much better than I was in the beginning of my illness, AND I’m much changed.

One day at a time - My life could be much worse, and as many people talk about getting “back to normal,” I don’t know what my normal will look like. What is in my power is to take one day at a time, keep going, keep in mind what my mom would want for me. And what my dad still wants for me. What I want for myself. A life with some enjoyment, and a sense of purpose.



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