Every two to three months I
have consultations with Dr. Margolis, the Developmental Optometrist who
supervises my vision therapy. He calls
them Progress Reports (PR) because he wants to know what kind of progress I'm
making. I had one recently, and it got
me thinking about effort and actually making progress. Although I get good news, we also talk about what
I am still struggling with in my life, as well as whatever part of therapy is
difficult for me. We talk about what
needs tweaking, or changing. I often end
up with mixed feelings after these PRs.
I feel good about my progress. But
I'm also reminded of, and feel frustrated about my limitations, the things that
once were simple, and now are difficult.
When I feel like this, sometimes I find myself thinking "well, what
if I just said enough rehab? What if I
decided to stop?".
Comparing myself to when I
was really really sick to the present, I can see very obvious improvement. But more subtle comparisons can be harder to
see, to feel, to appreciate. Those times
when I lose sight of those subtle improvements, that's when, if I let myself, I
can get discouraged. That's also when I
hear Dr. Glad's voice in my head saying "that subtle stuff, that's what
rehab is really about." It's not only
about going from feeling horrible to better, meaning feeling better rather than
feeling horrible. That's important, but
it's not the whole picture. The whole
picture of rehab is about the work, the effort day by day, week by week over
the long haul. Rehab is about making a
choice to keep going, to keep making progress.
Ultimately even though having wonderful people to work with is crucial,
it really comes down to me. I think it's
the same for whoever out there is doing rehab of some kind. It comes down to the person DOING the
rehab. It's saying to myself "I'm
making the choice to keep working, keep making an effort."
Then I start thinking
about why I do my rehab, why I make an effort.
I think about what effort really means, because rehab doesn't work,
isn't successful without lots of effort.
I was really struck by the definitions I found when I looked up the word
"effort."
exertion of physical or mental power
an earnest or strenuous attempt
something done by exertion or hard work
There are a few other
definitions, but these seemed to fit the best.
The word "strenuous" jumped out at me, because that gives me
an image of really hard, taxing work. An
image that definitely fits rehab. But
the one that really got me was "exertion of physical or mental
power." An exertion of power. Exertion is exactly how it feels, but the
other word is important - "power."
I tend to think of rehab as an activity that drains me, because it
takes, in my case mostly mental, power.
But rehab also gives me a kind of power; it enables me to work through
my problems, albeit very slowly.
Especially when I work to be able to do more IN rehab. Doing more, being able to do harder, or new
activities in rehab is important. That
gives me power, enables me to keep moving, keep going forward.
It's really important for
me to keep that idea of power, of being enabled, in mind right now. This is, honestly, a difficult time of
year. There are special events for the
holidays, connected to school, if you have school age kids. There are family events, and people plan
special outings. I understand that all
these things are part of life, an important part of life. But I can't participate freely the way I
want. I have to miss out on some things,
figure out what I can manage. I attended
our congregation's Sunday School Chanukah party, and our family party which we
are again hosting, is coming up. I'm
glad that these are two events I can participate in. I remember the first year I was sick I opted
out of hosting our family party, and in fact did not attend it, so to be a part
of that is obviously good. Family
members pitch in to make the party more manageable. I'm getting better at asking for what I need,
learning what works, and I do my best to manage whatever I have no control
over.
Being in a room with a lot
of other people is a challenge for me.
There's a lot of different stimulation; noise, movement, the general
hub-bub of people gathered together. If
I know a decent number of people, and the location is familiar, that
helps. I try to concentrate on what I
can do, as opposed to whatever is challenging.
At the same time, being aware of what is difficult helps me to manage,
to cope with whatever is difficult. Even
if it's just saying to myself "OK, this is hard, and you know WHY it's
hard, but you'll be OK." When I've
chosen to go to something, or do something, I go with my choice. I don't tell myself "you shouldn't have
done this/been here, you made a mistake."
I know that part of rehab is taking some calculated risks. The benefit needs to be worth the cost. I don't want to do something that will make
me feel really bad, and will require several days of recovery. But doing something that really tires me out,
and needing a very chill day the next day is acceptable. It's impossible for me not to think about
what I used to be able to do. It's also
impossible for me not to think about how some things that once were easy, are
now difficult for me to do. When I do miss out, I let myself feel sad, even angry,
because I figure if I don't, I'm asking myself to be a robot, instead of a
feeling human being. I tell myself again
that every small change in what I handle counts, and I make sure to note it in
my progress log.
I don't understand
everything about vision or my vestibular system, but I do understand much more
than I used to, and know why certain things are difficult for me. Sometimes understanding means a problem can
be solved, but for me, understanding, knowing, doesn't fix my problems. I need to leave the figuring out what to do, the
how to fix it part up to the professionals I work with. I know that Ann and Joyce and Dr. Margolis and
Dr. Glad won't give up on me. That's a
big part of why I stay in rehab, to have my team. I also realize that the most important person
in the equation is me, so I tell myself that above all, I can't give up on myself.
I have to keep making the choice, over
and over and over again, to do the work.
To put in the effort at rehab, and at home, and wherever I AM able to
go. That's the only way I'll keep making
progress.
