When I get up in the morning, part of my routine is to go
into Cara's bedroom, and open her curtains and blinds. Often, in the summer, she's not awake yet,
but I do it anyway. She expects it. These days I think about all the days ahead
when that won't be necessary, because she won't be here, to have closed them the
night before. It's amazing to me how
fleeting time can feel.
I looked at the calendar the other day, and thought
"wow, it's August already!", and then yes, I thought again about Cara
leaving for college in a few weeks, and her sister leaving only a few days
later. I'm caught between "Oh my
goodness!", and thinking "yes, and the days will keep going, and
eventually they'll be home for a holiday or a break... It's transition time... that's life". Time passing can be strange - psychological
time and REAL time can get funky.
All this leads me to think about exactly how I spend my
time, which in turn leads me to think about my priorities. How I use my energy, as opposed to purely
using my time. I remember the first time
I saw Dr. Margolis (my Developmental Optometrist who supervises my vision
therapy), I told him that I wanted to drive again. Driving is a very complex activity when it
comes to vestibular and vision disorders.
Driving is much lower on my list now.
Yes, it's a pain to make arrangements, but I've gotten used to it. As time has passed, what has become MUCH more
important to me is to be able to actually DO something once I get
somewhere. THAT is something worth
working on.
Going someplace - say, to a social event - is a big deal
for me. I struggle with my social
life. I don't say that asking for pity,
but rather because it's a reality. I
know I'm not the only one who has this struggle, but it's still mine, and has
no easy answers. In addition to social
life, what other large goals do I have? I remember a year ago, when Leena went off the
college, I really wanted to make things happen, and tried too hard, too fast to
get on the path to teaching private flute lessons again. I ended up setting myself back, needing to
regroup, recover, figure things out. I
don't want that to happen again. So I'm
thinking about what I've learned, and where I go from here.
I've confirmed that having a predictable home environment
- or at least relatively predictable - is really important in order for me to
be able to function. I've written about
the importance of routines, and of having a stable physical space at home. This summer I learned how much energy it
takes away from being able to do other things, to be able to THINK clearly, if
I have to work hard in my own home.
Challenges are good, but only doable when there is, to pardon the pun,
balance. When everything turns into a
challenge, I become overwhelmed and overloaded.
So what does all this mean for me?
I'm approaching the concept of goals a bit differently
this year. I want my larger goals to
flow a bit more naturally, to kind of see where things go. I think it's fair to say that my disorders
have made me winnow down to what is really important to me. I said earlier in this post that I think
carefully about how I use my energy.
This isn't just for big things, like being able to do an outing. It's about how I spend my time on the
computer, since that's a demanding visual activity. When I ask myself "what do I want? what do I need?", here's what I've come
up with:
1) Being productive - it's really important for me to feel
like I'm contributing. I have to be
creative about this, but two things that come to mind are writing my blog, and
being an Ambassador for the Vestibular Disorders Assn.
2) Keeping my mind busy.
It's REALLY important to have things to think about, particularly about
things in the world around me.
Rumination about my own circumstances can go negative, and that does me
no good.
3) Making progress. I have to keep up my motivation to do
my home therapy not just to feel functional, but to try to move forward,
regardless of how slowly. I want, and
need, to take my life one day at a time, but making progress means that big, long term
goals like teaching flute are still a possibility. So yup, I need to find balance between here
and now, and progress.
4) Staying connected to others. This is HUGE.
Doing what I can to interact with others on FB on a daily basis makes a
difference, makes me feel less isolated. Going to an occasional social event if/when
possible, and talking on the phone with someone when possible are also valuable. None of this is easy for me, but it's incredibly
important.
All of this makes me feel like I have a life, that I am
not just my invisible disorders. None of
us are only our invisible disorders.
Nice to read that I am not alone in this world. Routines are very important for me including Adjustable Routines. Is your Vision Therapy for vertigo?
ReplyDeleteGray Buffalo - My VT isn't really for one specific symptom - the symptom that my vision disorder causes depends on what I'm doing... vision is really integral to balance, bc balance comes from inner ear, vision, and the brain... if you look at About Me you'll see links to some articles re my 2 therapies... also feel free to look at "vision is so much more than 20/20..." hope this helps!
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