Wednesday, June 10, 2015

My Response To Negative Comments

When I started this site my goal was to raise awareness for my unheard of illness (Systemic Scleroderma), but mostly to give a glimpse to the general public of what day to day life looks like for a patient battling serious illness. I wanted to bring to light the misconceptions around living with disease, and to express my honest thoughts about this life style. I was not looking for popularity, sympathy, or any compensation when beginning to journal my every day reality; I was simply looking for an emotional outlet.
As my posts have now become viewed by thousands I have found that the average Internet goers are exceptionally vulgar and lacking any empathy at all. They apparently have the inability to sit back and accept another's opinion, or pretend for a moment they are in the authors shoes. I honestly have to sit back and laugh at comments I have read on sites such as Yahoo, The Huffington Post, and many others! People feel entitled behind a screen, they will never get caught, and never have to face a consequence for their words. They feel victorious when they slash the keyboard attempting to bring down the individual that has barred their soul for the world. We seem like weak and vulnerable targets to these over opinionated bullies who have nothing better to do.
Please know I take these 'comments' with a grain of salt, and many of them I don't even read. Everyone is entitled to their opinions, just like I am mine. I have every right to share my thoughts on the life I must endure -- just like they have every right to comment on it. Now before you accept that as an invitation to demolish my existence take a moment to picture yourself in my shoes.

Imagine you are a 23 year old young woman with no life ahead of you. You are attached to a heavy oxygen tank because you cannot breath properly on your own; you feel crushed and suffocated with every breath. Imagine your nauseous at all times, you want to eat food but either it gets lodged in your esophagus, or you vomit wildly like you have food poisoning with even the smallest of bites. Imagine you have a large tube protruding out your stomach that you receive all your nutrition from -- that you can no longer eat. That cheese burger you just saw on the Red Robin commercial will never be yours. You want your favorite salad from Olive Garden. No.
Imagine every six weeks getting a one inch long needle shoved into your chest for chemotherapy. Imagine the 28 prescriptions you take three times a day. Imagine the crushing, solidifying feeling of constant joint pain with every move.
Imagine you are me.
Just five years ago you had your whole life ahead of you, anything was at your finger tips. You had a college scholarship and was ready to follow your dreams, marry your high school sweetheart, have children, buy a house, and live a beautiful life till you were old and gray.

That fantasy is gone, and a harsh reality has taken its place. It was swept away in an instant and your life is over before it ever began. You're told you are going to die, you can never have children, and will lead a miserable, painful existence for the remainder of your days full of doctors appointments, surgeries, infusions, fistfuls of medications, and harsh chemotherapy.
Now that you have a brief understanding of my world, think about your life behind that keyboard. How old are you? How many children do you have? Did you get to attend college? Can you eat? Can you breath? Are you able to work? Can you walk without pain?
These are things I will either never get to participate in, or likely will ever do again. The purpose of this post is not to complain about my life, (as I actually quite adore it) but to give you a better chance at comprehending who you are slamming on the other side of that story.

Now, I invite you to please tell my cannula wearing, feeding tube wielding, chemo-riddin self what you think of me if you still feel 'big and tough' behind that computer screen. I am a strong woman and if a terminal illness doesn't get me down, your words surely will not!
If you have nothing better to do than poke inappropriate, narcissistic comments at a sick young woman who can't defend herself you should probably take this opportunity to do some serious soul searching. That being said...




With that negativity out of the way I also wanted to share for a brief moment the incredible side of the Internet I have found through blogging! I have received dozens of heartfelt emails, comments, and messages expressing support for my condition, and encouraging me to continue my work raising awareness. Each of these emails make every single negative comment melt into the background. Thank you from the bottom of my heart to all of those readers who take the time to personally find out a little more about who I am, and realize that there is an actual living person behind this screen!

To learn more about me please visit the "Welcome" and "My Story" tabs located on the top navigational bar. To learn more about Scleroderma please visit the "Sclero-What?" tab.

10 comments:

  1. As always, Chanel, well said! You may not have much of a "life", but you are loved more than most. Stay strong!

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  2. Darlin you just keep being Positive. I know people who expect I should be not so happy everyday and having a smile even when enduring excruciating pain. as one blog says it "Its just a bad day , not a bad life". You inspire more people than you know. And just imagine there is a smart person in the trolls life smaking them on the back of the head for writting such tripe. Cheer up... it could get worse... as my mom said (thanks mom).

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  3. You ARE a beautiful, stong, well written, motivated young woman and I don't even know you other then the few blog posts you have written! Love you attitude and perspective on life, we can all use that :)

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  4. I hear ya! Recently I started a fundraising page so that I can get to the Mayo Clinic for treatment that will make me feel better and perhaps let me live a little but longer. Friends, co-workers and even strangers have overwhelmed me with kindness.
    And then enter and internet bully who is an admin in a group I used to belong too. He began to announce that I was lying and that I was not sick at all. He told everyone he could that my efforts were a con. It was very ironic since he himself is an ex-con - having served time for many felony frauds. It was discouraging and hurtful.I eventually just let it go figuring karma would catch up to him. And it did. His brother evicted him and he is now a homeless troll.
    Sometimes life is good.

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  5. I just lost a post telling you how much you lifted my spirits today. You are so inspirational and wise beyond your years! I wanted to thank you and tell you you reached me so clearly ... I was online looking for yet more cosmetic assistance to restore what was left of my body after coming back twice from my deathbed...too personal to write more here -- I'm not as brave as you are out in public like this. My search led to your article and post , which stood out midst the usual stuff. I have had now two moments in my life where I experienced life-changing epiphanies ...one was yours today! Both times the message opened my eyes to my energy flowing strongly l, but in the wrong direction. (I wish I hadn't lost the post that was worded better. These are out of order thoughts,/ please bear with me because I wanted to thank you today) When I scrolled down and saw your proud face with a cannula like mine, I began to cry, and received more help from your few words than months of searching and reading about fighting the ravages from many illnesses have brought me. It's been so hard for so long . In you I received the kind of help so rare, I never expected another signpost reorienting me in a much better direction. Your post on loving my broken self and letting go of trying to recapture what I (in my vain case) used to look like and feel like was exactly what I needed to hear. Trying to do the impossible is tiring, duh! Thank you! And I'm so glad you felt well enough to come to my hometown earlier this month, and I hope you are feeling well this first day of summer.
    With love and admiration,
    Vivia
    Another Girl on a Leash

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    1. Hi Vivia! Your comment has got to be the sweetest thing I have ever read; you brought me to tears! Thank you so much for your kind words and love. I am so sorry to hear you battle the demon of illness as well, you sound like a courageous fighter! Letting go is so hard, its absolutely the hardest thing we as a patient will ever have to do. You are not alone in your battle Vivia!
      Sending hugs and good vibes from your Seattle cannula sister! :)

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  6. I just wanted to let you know that you have made a difference. You will be remembered.

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  7. I don't understand who has the heart to leave negative comments on your posts.

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  8. I stumbled on here. I am so happy you are who you are. This earth and all of it's circumstances affect you but it does not define you. Neither do unspiritual people. But you are affecting others and maybe one day, one or more of those other indivuduals will change because of you. "Anyone among the living has hope. Even a live dog is better off than a dead lion." Ecclesiastes 9:4 I was affected and my intent is that is isn't in vain.

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    1. Thank you so much for taking the time to write me Annette. Your words hold such a strong affirmation for me that I am doing the right thing by sharing my story. You are so right, my circumstances affect me. but do not define me! Much love.

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