19. That's how
many Ambassadors VEDA has now. This
includes several outside of the U.S. , and as a group there has been quite a
range of activities in the few short months since the Ambassadors Board
began. People tend to think of high
officials when they hear the word ambassador, but an ambassador is also a
representative for something or someone.
To me, being an Ambassador for VEDA means that I'm an advocate, a voice
for those with invisible disorders. Part
of that to me means being a kind of educator.
My degrees are in psychology and English literature, with a Master's in
Human Service Administration, not Education.
I don't think my education was a waste of time by any means, but
sometimes degrees aren't all that's needed. My thoughts and experiences are now
colored by, affected by my invisible disorders, and what I learn through my
therapies. As an Ambassador, I'm sharing pieces of my
journey.
There is no shortage of info to take in, in this vast,
interconnected world. Everyone makes
choices about the new information they take in, process, absorb. I spoke to someone recently who said she
doesn't follow the news, knew nothing about what happened in Ferguson (this was
prior to Garner's death). To my
knowledge, she doesn't have any health or other major issues going on, so I
have to admit this surprised and bothered me.
I know there are others who follow issues, whether political or social,
more closely than me. I'm sure there's
plenty of news (especially due to my vision disorder) that I don't absorb, but
I do try to be somewhat informed about major stories. I care about the racism that clearly still
exists in the States, as well as what appear to me to be serious problems with
police and our justice system. I've had conversations with my daughters about
very real problems, as well as what's good, about our school system. I share posts on FB about these, and other
issues I care about. But in the end,
there are many issues I don't personally feel qualified to write about in depth.
Back to being a VEDA Ambassador. I do feel qualified to write about various issues
related to invisible disorders. My own
medical journey to find answers, actually living with invisible disorders, and
living with someone with an invisible disorder (Ron has Bipolar Disorder 1 with
Anxiety) qualify me. I've had important
conversations with FB friends, and people connected to VEDA dealing with living
with invisible disorders. I talk to my
therapists, and am constantly putting more pieces together. I learn from all of this, and be a better
advocate. Many invisible disorders are
complex, and the medical community still has so much to learn. A lot of that knowledge can come from medical
training, which is important and needs to improve. But it also needs to come from feedback from
patients, the ones actually living with disorders, looking for accurate
diagnoses and effective treatments.
Education doesn't just happen in the classroom, although
what happens in the classroom is really important. I asked myself the other day what the goal of
education was, and yes I looked up the word "education." Here's the definition:
"the act or process of imparting or acquiring
general knowledge, developing the powers of reasoning and judgment, and generally of
preparing oneself or others intellectually for mature life.
and
the act or process of imparting or acquiring
particular knowledge or skills, as for a profession."
Formal education is important, but in addition to a
profession, I think a lot of the above can be applied to advocacy, trying to informally
educate the public. Advocacy can create change in a variety of ways, and that
creates progress. Someone with a
well-managed invisible disorder, rather than mainly needing to be taken care
of, can be a functional member of their household. That person can also contribute, even if they
don't have a paying job, in their own little pocket of the world. Despite this, there are times when I feel like
advocating for people living with invisible disorders, being heard, is a
strange sort of competition. With so
many issues worthy of our attention, it makes it hard to hold anyone's
attention long enough to really have an impact.
That said, I also feel that in the end advocating
for change, both in attitude and in action really does pay off for
everyone. People with vestibular,
balance or vision disorders (just to name a few) want not just to be heard and
understood, but to be contributing members of society. Everyone wants to have purpose, to feel
valued. Enabling people to work, to be independent is sometimes complicated, requires
some problem solving. I've been
listening to "Think Like a Freak: The Authors of Freakonomics Offer to Retrain
Your Brain." None of the ideas that
they've presented so far sound freakish, and it is not, in my opinion, brain
re-training. It's more about thinking in
a non-traditional way, getting past emotions to think clearly and logically,
and figuring out how to deal with problems.
I said that to be an Ambassador, an advocate, means to be
an informal educator. But I don't think
anyone can be effective as an advocate if you leave compassion at the door, and
only think in practical terms. If you
don't care, there's really no point in being an advocate. I'll give one more definition here, for the
word "compassion."
"a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering."
The phrases in this
definition that got my attention were "stricken by misfortune," and
"desire to alleviate suffering."
There's no question when I look back on my worst days, or comments that
I've seen posted online, these words fit those with vestibular and balance
disorders. There are other invisible
disorders that unquestionably also fit. It's
one thing to be bedridden for a few days with a nasty virus. It's quite another to spend large portions of
your days, for weeks, or months in bed.
Once I found the right therapy for me, when I first worked to get more
mobile, I walked down my driveway. Then
I began going down my driveway, and walking one or two houses down the
sidewalk. I gradually increased, adding
one or two houses every few days.
Regaining mobility had a huge impact on how I felt about my life. I don't think about this all the time, but
remembering occasionally isn't a bad thing.
It reminds me on my bad days now, to keep perspective, and it reminds me
why I want to advocate for others to make progress. A therapist once told me that people can get
what she called compassion fatigue. That
if there's too much demanding emotional attention, people either tune out, or
show a bad attitude.
I have to believe, despite
change coming slowly, "compassion fatigue", and all the issues
demanding attention, that it's worth it.
That as a VEDA Ambassador advocating for those with invisible disorders,
I do get people's attention. I don't
begrudge people speaking out about bullying, political problems, the
environment and more. And I want to be
informed, so I absorb what relevant, reliable information I can, and try to
learn from others. But I want to be an effective advocate, which to me means
writing about, and advocating for what I know and personally experience. People with invisible disorders, because I
feel very strongly that we need a voice.
Good health is an incredible asset.
During my first year of illness, when I spent so much of my time in bed,
I was keenly aware that I wasn't productive, and I hated it. Now I want doctors and anyone who deals with
people with invisible disorders to learn, pay attention, gather information
that will help. People who are suffering
need to be heard, along with all the other problems in this incredibly complex
world we inhabit. If everyone who cares
about something speaks out, there is a very powerful collective voice for change.
Well thought out, articulated blog entry.
ReplyDelete