Over
the years writing has almost always been my go-to stress relief method
and a great way for me to express my opinion or feelings about a wide
range of topics. I have recently taken a huge step back from the SMA
Community because I feel that I can better serve the community by
keeping my opinions to myself. That being said there is something that I
feel a need to write. This may never go further than my fingertip or it
may go out with a bang of a blog post. I won't know until I am finished
and even then I may hold on to it for a few weeks or months and decide
to release it when the level of tension isn't as high. Whatever this
ends up being it is most important for me to get this out of my system
before it festers and becomes something that I cannot control.
In
recent months there has been what seems to be an ongoing argument and
to call it a discussion doesn't give it the level of anger, disrespect
and quite honestly disregard for others feelings that has come to a
head. It comes in different packages and finery, from the headline news
to Hollywood scripts to quiet corners of family homes but ultimately it
boils down to a certain topic that has been heartbreaking for
generations; the right to die or live. It can be looked at through a
thousand different lenses and a kaleidoscope of colors from rosy to the
bleakest of blacks. Most recently it has been called into question by
the story of Julianna Snow and it's counterpoint in
the "Dear Julianna" campaign,
the controversy surrounding the best selling
novel, by Jojo Moyes,
turned movie "Me Before You", to most recently the headline
"Appleton teen makes heartbreaking decision to die".
As I sit in my
new apartment listening to
"Hold On" by Wilson Phillips, I have come to
the conclusion that I can remain silent no more. I have stood on the
sidelines of all of these controversial topics, silence at my side, I
have read and reread the variety of opinions from people who have
inserted themselves and their opinions into one or all of the
aforementioned topics. People who feel that they must speak out for
those who can't or those who they feel have an incorrect perception of
the tales flooding Facebook newsfeeds. This is in my own opinion one of
the biggest issues; assuming that you know how someone is feeling or
should be reacting to a certain situation. Sure, you may have the same
diagnosis, you may have experienced something similar at the same age in
the town, or you have professional experience with a similar set of
circumstances and made a completely different choice for yourself or
your child or chihuahua so you feel that need to share that. Power to
you, your parents, your cousin three times removed and your 2lb
chihuahua who lapping up cappuccinos from a ceramic teacup while you
type out your scathing rebukes of people who did it "wrong" in your
opinion. Note: I have nothing against chihuahuas, they were the only dog
that I could think of that started with a 'C'. That really is your
prerogative to put the world on blast in whatever form suits you best.
Difference of opinion is what makes the world go round but what makes it
truly impactful is when you take a few extra moments to understand that
your experience is just your experience and it does not necessarily
reflect the experiences of any other person on the planet.
In my
younger years I mistakenly thought that my experiences were universal
and over the years as I have grown as a person I have come to realize
that while my life may include aspects that others can relate to, no one
else has lived my life and on the flip side I have not lived anyone
elses. When it comes to the three examples I listed above I have not
lived with
Charcot-Marie-Tooth (CMT) the disorder that Julianna had, I
have never been a physically active (eh-hem, not to mention, fictional)
male who ends up paralyzed like Will Traynor in "Me Before You", and
while I do have the most in common with the "Appleton, WI girl", I am
not in her body. Let's back track a bit and make a case for each
individual story and how similar and dissimilar my own life experiences
are. Let me begin by saying that when it comes to Julianna Snow's story
that has been raked over the coals so many times that I have sometimes
felt physically ill from the opinions I have read. In part I must say
that I followed the journey of Julianna's family before it became a
controversial story in the eyes of all of America from coast to coast.
Her family shared their journey to Julianna's choice on a blog and while
I was not a faithful follower, I did read what I could. When their
story became the stuff of every family's nightmare by ending up as
fodder for hundreds of adults with disabilities, I had already been
following for several months. At the time I did not feel the need to add
my voice to the public outcry because I was one of the few who didn't
see Julianna's choice as anything more than what I watched my own sister
decide. My sister,
Emma, had
Spinal Muscular Atrophy (SMA) type 1 and
when I read
THIS conversation
that Michelle, Julianna's mom, shared with the world it was like being
transported back to March of 1992 when Emma and I had a eerily similar
conversation. That conversation with my sister made a huge impact on my
life even though I was only 4 at the time. I would never claim to know
what it is like to lose a child or to use palliative care to ensure that
your child is comfortable but having that experience with my sister has
made me far more empathetic to individuals and families who have chosen
that care path. I did not then and would not now join the "Dear
Julianna" campaign because while I am not now on a palliative care path I
can understand how someone, yes, even a 5 year old, might very well
choose to never go to the hospital again and to choose to be at home
when the time to fly comes. In truth, who would choose to go out in the
hospital attached to more machines and invasive mechanisms than ever or
at home surrounded by the people and things that you are most familiar
and comfortable with (and this can totally include machines, if so
chosen)? This, quite seamlessly, brings me to the backlash surrounding
the movie "Me Before You". I must first say that I have not yet seen the
film so my analysis is based solely on the novel of the same title. I
began reading "Me Before You" written by Jojo Moyes a few weeks after
watching
THIS trailer that
had been posted by a friend on Facebook. There are, in my opinion, not
enough books let alone movies that explore the reality of someone with a
disability falling in love and that was my impression of what the book
would be about. Once I purchased the book on Kindle I did read the
description on GoodReads and braced myself for a tear jerker upon
reading some of the reviews that alluded to the right to die theme of
the novel. As the release date of the movie grew closer I began to see
more and more people post scathing reviews of the movie they hadn't seen
based on a book they hadn't read. I'll leave my feelings about that
particular aspect at the door. I did not agree or disagree with the
multitude of opinions because I knew something that everyone else seemed
to have totally overlooked. "Me Before You" is fiction, aka pretend,
aka
Will Traynor did
not then and does not now exist. Sure, the reason that it is a best
seller and was turned into a movie is because, like thousands of other
works of fiction, it is believable and could easily be a biography. But,
and this is huge, it is really hard for me to be up in arms against a
work of fiction. That part put aside, I cried my eyes out at the end of
the book. I have always been a bit of a weeble when it comes to any part
of the right to die movement. I feel that life is so precious and far
too often people in the medical profession don't provide individuals and
families the option to choose life. That is an issue for me beyond this
book and the stories at the forefront of the right to die movement. If
all of the options are presented equally to the individual or family in
each case and they still decide to pursue any of the options then I
cannot personally disagree with any choice. Again this makes it an easy
transition to the "Appleton teen makes heartbreaking decision to
die" headline that is now at the forefront of the ongoing argument of
people who fall on opposite sides of the aisle. This is by far the most
difficult situation for me to share my feelings about. The "Appleton
teen" is not just another face in the crowd to me. In addition to the
fact that I have the same diagnosis I have also personally known this
now teenager since she was a little over a year old. She has a name, a
family, and numerous friends who all love her immensely and I am blessed
to be a small part of that circle. Knowing her means that I know that
her decision is not a flippant one made because she is having a bad week
or because she is suicidal due to depression. Knowing her means that I
have watched her undergo surgery after surgery in an effort to relieve
the unending pain she has been experiencing for more years than any
person should. Knowing her means that as I read the backlash from people
who do not it breaks my heart with each word of "I would NEVER allow
this" or "I would NEVER choose this" or "If it were me/my child". First
take a minute to think about and reread what you just typed, take the
focus off your own situation for a minute and realize one extremely
important thing...This. Has. NOTHING. To. Do. With. Y-O-U! This is not
your story and you should be thankful that it isn't so take one giant
step back and realize that. You, like me, may have the same diagnosis as
her but it is not your decision.
I
can't write anymore today without this going down a very dark road that
I can't come back from. What I want to end with is a line from "Me
Before You", slightly altered to apply to all situations, “I want you to
live if you want to live. If you don't, then by forcing you to carry
on..... we become just another shitty bunch of
people taking away choices.”
―
Jojo Moyes,
Me Before You
