Saturday, July 16, 2016


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


Anonymous said...

As always. Well said.

Adelaide Dupont said...

What a year it had been for the Moons.

[It was Bill Peace a month or two ago who brought me to "Dear Julianna"].

Reading through that conversation for the first time, and being mindful of what you and Emma talked about in your respective lives and deaths.

Shelle H said...

You are amazing!! <3 I love you!!!