For some medical
professionals, knowing what an experience is like isn't as important. Some experiences are easier to imagine than
others. Even if they've never broken a
leg, or an arm, a physical therapist (PT) has a reasonably good idea of the
issues involved to help someone who's just gotten their cast off. But some medical problems are different. My guess is that most neurologists, and
probably many therapists (such as PTs) have never had neurological problems
themselves. At least not chronic
conditions. Sick people simply cannot
treat sick people. Medical professionals
may know someone - a friend or family member - but they're not living with it
themselves. And although there are
definitely some common symptoms, as well as triggers, experiences are also very
individual.
Parts of my life that are
obviously challenging to me, or anyone living with an invisible disorder, may or
may not be obvious to the professional you're working with. For me, this means I have discussions with my
therapists about what it's like for ME. I
need to try to share experiences with them.
Sometimes I talk about planning and management, and sometimes I ask
questions, or they ask me questions and we work things through together. This isn't always easy, and sometimes when
I'm asked a question, I have to say "I don't know." I know my therapists also pay close attention
to me, watching me while I work. My
discussions with Dr. Glad tend to be different than with Joyce or Ann. Joyce and Ann talk about integration, and how
my therapy is impacting my life outside of my sessions.
How obvious is everything
for family members and friends? Unless
you're really sick, it's often not very obvious. Someone may have had a balance/dizziness
problem that lasted a few days, even a few weeks, which would give them a taste
of the experience. That's a good thing,
but it's not the same thing as the experience of living with invisible
disorders; those who don't have the disorders can't know exactly what it's
like, and we (the ones with the disorders) really can't expect them to. With friends and family, it's often easier,
and makes more sense, to simply say "doing (fill in the blank) is hard for
me." And a lot of times that's
enough. Expending the energy and
effort, doing the mental processing required, to explain things in detail isn't
necessary. I do occasionally have explanatory
discussions with Ron or my girls since they live with me. But
for the most part, by now they either know my capacity, or I'll say "I can
do this," or "I can't do that," or "this is what I'm able
to do regarding (fill in the blank)."
When I think about all
this management, planning and rehab work, I tell myself that if I'm going to DO
things, it's just part of the package for me.
It would be easier not to do anything, but then I wouldn't be making any
progress. I've mentioned my progress
log, which in my case is a very basic document on my computer. I try to note some stuff every few weeks. Even if I don't instantly note it in my log,
I also try to simply be aware of whether or not something that I do regularly,
but not very often, is getting easier.
Like going to the dentist, or getting a haircut. I
think about if something as basic as whether the break I need after a
particular regular activity is getting shorter, if there's been any change.
My progress log is
important and meaningful to me, but it doesn't reflect my daily or weekly
existence. I have some basic structure
each day and week. Monday and Thursday
mornings mean therapy. I do something -
like writing my blog - on my computer most days. Other activities might be listening to an
audio book, playing my flute a bit, listening to music, or dealing with a
household task I can manage. As I move
through my day, I deal with various challenges, but I don't think every second
"OK, now I'm working towards this goal, now this moves me a little closer
to that one." When progress is
slow, I think that kind of thinking would make anyone crazy. I
think, sometimes consciously, sometimes not, more in terms of
management. And then I try to step back
sometimes and realize what I did that was work for me, or that was a bit
easier, or less work. And sometimes I
try to just BE. Like really hearing the
notes I play, listening to the person I'm talking to, or to an audio book.
There's a lot of ways to
measure progress. I think about that
when I'm trying to plan, and getting frustrated because I end up thinking about
my limitations. I find myself thinking
"OK, is the benefit of this challenge worth the cost?". Sometimes I know, sometimes I don't. Sometimes I can control how I challenge
myself, and sometimes I can't. And if I
want to do more, to add even a small extra challenge into my week, I don't
think about it as an isolated piece. Sometimes
there's a piece of planning I have to share with Ron and/or the girls, rather
than only thinking about it. I try really
hard to prioritize my planning, and may go back to something because processing
all the planning begins to overwhelm me.
The hardest rehab work is
when I'm actually in a session, doing therapy.
But a couple hours a week is definitely not the whole picture. My progress log is a tangible thing that
reminds me that there is just that, progress.
But so much of what I do, whether I note it in my progress log or not,
contributes to my rehab. I don't have to
be in a therapy session, I don't have to be doing any specific exercise, for it
to be a part of my rehab. That's the
nature of this kind of work - it's like having a job no one pays you to
do. And the planning, management, all
the processing is all part of it. I know
that this kind of brain retraining, like Traumatic Brain Injury (TBI), takes a
long time - usually a few years. So in
terms of that kind of time frame, even if it doesn't always feel like it, and
even though it's exhausting, I'm doing my job well.
