One of my favorite pictures of Molly :-) (photo taken by my daughter Leena)
VeDA - I've reached out
to the vestibular disorders Association - VeDA - & will be doing peer to
peer support calls when they have a need. I'm also hoping to make some calls in
preparation for balance awareness week in September, on behalf of VeDA, to
remind people that BAW is coming - so folks can start thinking about how they
want to pitch in that week.
Writing - I've also
reached out to hopefully find a writing coach or partner... I want to improve
my writing, & ultimately get published beyond my blog... getting feedback
about my writing, as well as tips on ways to get better will help - it's been a
long time since I was writing many, many papers for college as an English
Literature major :-) - as well as for Art History, Psychology - yup, LOTS of
writing!
Owning - Interwoven
throughout this thinking is this - in September, it will have been eight years
since I got sick, & I realized that owning, even embracing my health situation
is healthy. My therapies are all extremely helpful, & I DO see their impact
outside of my sessions, but there is a certain bubble like quality to therapy.
The environment is geared towards the people it serves, which is good, even
appropriate.
Vision - I figured out
recently that if visually I'm at my threshold, it impacts my auditory system,
which given how interconnected these systems are neurologically is not
surprising. The good news is that if I can take a break, I can recover, so I
can once again do auditory & cognitive processing.
Social life - I've also
given a lot of thought to my social life, which has changed dramatically. I've
reached out recently, to try to have more phone connections - I am, thankfully,
able to handle talking more on the phone now. I honestly need to have
connections with people who understand my circumstances. This doesn't mean we'd
always talk about our health, but it does mean knowing the person on the other
end of the conversation gets it.
Pacing - Pacing myself
is, to a degree, a matter of prioritizing, meaning that I may choose to write,
which means less video. If I have more e-mail to attend do, I don't write for
myself. If I want to watch some of a DVD, I watch less YouTube video. Some days
are easier to manage than others, & that's my reality.
Independence - Thinking
about my reality, I realized that I've always thought being more independent
would mean doing more "out there" – meaning not at home. There are three
pieces I come back to when I think about the concept of mixing higher
functioning at home with more activities beyond my home.
1) put simply, I am not
going to go back to how I was pre-illness. I honestly believe I'm better off if
I recognize this.
2) being independent
actually can be about how it is for me at home - how do I feel when I'm home? Moving through my day depressed is clearly not
healthy, so what do I do? how do I occupy myself? what's my attitude towards my
circumstance? I say again, I didn't ask to get sick, but I did. Fighting this
reality is unhealthy, accepting it allows me freedom.
3) I've asked this
question before, but it's worth repeating - what could I do if I wasn't
expending energy/effort in three weekly therapies? Acknowledging my own physical, neurological, emotional, and
cognitive limits is important.
