In a little over a week, Austin and I will be making another
trip to Chicago to participate in a couple of research studies. We will be
ending the speech and language study we began in May and starting the toolbox
study (an app to measure cognition). Our
days of participating in any clinical drug studies ended abruptly when in
December 2013 he developed a severe case of Hemolytic Anemia and they had to
remove his spleen. I’m thankful that
there have been other studies, not drug related, that we have had the
opportunity to participate in now that he is once again healthy, even with no
spleen.
Austin did his first study, on speech and language, over 13
years ago, with the wonderful staff at the Waisman Center at the University of
Wisconsin-Madison. It was a five year
study and he learned to travel by planes and taxis, visit unknown locations,
stay at hotels and interact with strangers. When we began I told him he would
have the opportunity to help others learn more about fragile X which would in
turn help others just like him; who would have guessed he likes to make a
difference, he likes to contribute. What
he also likes is how the staff make him feel important, how they build his
self-esteem.
Since I’ve participated in a few research studies myself I
know how grueling the testing can be. I’ll admit in one such IQ test towards
the end of the day I started thinking about how I could shorten a test,
i.e., a pre-determined number of wrong answers
in a row will easily end a section, shorten the testing, testing reminded me of
an six hour final exam.
For Austin, early on, he’d naturally bomb out early, but
with every year there was growth, there was measurable improvement even if it
was slight. Nevertheless he works very
hard and does his best no matter what’s required.
When we travel he loves the one-on-one time he spends with
mom. As he has aged we’ve grown our research experience a little not staying
isolated within a hotel room or testing facility. Back in the early research study days I’d try
to minimize the unknowns, stick to a routine which included a visit to the
pool, renting a movie and eating at the hotel.
In May, with our first part of the speech and language study,
we arrived in the late afternoon on Thursday a day before our study activities began.
Like a carrot at the end of a stick, to encourage Austin to leave the hotel, I
dangled before him a trip to the Disney Store on Michigan Avenue. For me it
would be sinful to visit Chicago and not be out and about. Since we were
staying close to the “L” by the Willis Tower I knew this would be no small
adventure. We opted for the hotel by the
“L” because I wanted to avoid the extreme parking fees downtown and simply
parked at Rush University/Medical Center since it’s a block from the Pink Line.
The carrot worked well, we took the Orange line to get us a
little closer to Michigan Avenue and did a lot of walking. It was an
interesting walk since he identified all the different logos he recognized and
often told me while we were walking arm-in-arm that he would protect me. Now
that could have been a little of his anxiety sneaking through or just his
instructions from Dad, “Take good care of Mom, be good for her.” It was quite
the adventure with a stop for dinner on the way back, we were wandering around Chi
Town for over three hours before we hopped back on The Pink Line to head back
to our hotel. He did remarkably well.
Friday morning after breakfast at the hotel we hoped back on
The Pink Line to head to Rush to begin the study.
Now I’ll get to the nitty gritty about why I called this
“The Pink Line”. Accessing the “L” is
not a favorite activity for Austin, lots of open stairs and it takes him time
to two foot each one (mom on the other hand could probably go up and down them
twice for the amount of time it takes Austin to make one trip up or down). Now I could use the elevator when available
but on the off chance it might not be available I’d rather have him always do
the stairs.
To get to Rush from where we were it was a pretty easy ride,
maybe only four or five stops. None of those stops were along the Loop. Our
trip was not too congested since we were heading out of the downtown area when
most of the commuters were heading in.
The biggest bump in the journey was the stop at Polk Street,
our exit for Rush. Austin before exiting
noticed a gap between the train and the platform and froze in place. That’s when I had no choice but to push, and
not too gently. I had visions of us
riding on The Pink Line stranded like Tom Hanks in the movie “The Terminal” in
what would feel like forever and ever.
In the past weeks I’ve thought a lot about The Pink
Line. The Pink Line is a part of many
people’s lives for one reason or another they are stuck, they have defined
their limits and let those limits define their life. Often they have a very negative impact, they
take away the wonders and opportunities available each and every day. After
all, when you are six feet above ground you’ve been given a gift that should
not be wasted.
So if you find someone who is stuck on The Pink Line give
them a little push, help them close the gap and take a step forward. Understand
their fears, their sorrow, whatever is keeping them trapped but support them in
a way that enables them to move past their limits. Sometimes we can push
ourselves but sometimes we need a little help from our friends.
