Jesus! I knew that when I started this blog that I could not assume everyone would love it. I knew I would have some haters. But here’s the thing, that’s okay, because I can take it. Trust me, I deal with much bigger problems than a few people who “dislike my blog.”
I started writing this blog with the intention of mostly talking about interior decorating but it has evolved into more than that. You may think that I am completely forthcoming with all that I talk about with this blog but I am not, at least not all at once. I tried to keep this blog light and lighthearted even if we talk about some deep subjects. However, there is so much that you don’t know. I intend to be an open book because that’s how I live my life. I do not have secrets and I tell everybody everything. It is not my intention to be Debbie Downer or exude a “woe is me attitude.” That is not who I am. I wake up happy and try to see the joy and beauty in every day. Of course, there is extreme ugliness with my disease that I spare you from. Why would you want to hear all of that? However, I will not spare anyone from it when I write my book. You can either choose to read it or not. But, today is different… Today is going to be ugly. I’m going to tell you some things that will make your jaw drop, I am going to call one person in particular a fat fuck about 400 times, and the unfortunate part of my disease will be exposed a little bit. If you want to quit reading, be my guest, because today I am going to be a total b*tch. However, I will be truthful. Tomorrow’s blog will go back to normal and we will talk about spaghetti carbonara and lasagna but today… Not so much.
I was reading a wonderful blog last night called The Gardener’s Cottage. It’s a really great blog and y’all should check it out. The author of the blog wrote a really sweet blog posting about me and I was going to the comments section so I could write something back to her and thank her for all of her kind words. I started to read all of the other comments that people had written about me… Really thoughtful, loving, supportive, endearing comments… Until there were about 10 comments from readers who basically hated me. Here’s the good news… I don’t care. Here’s the bad news… I do care.
Apparently, some of these readers (and the rudest one posted anonymously, of course) are miffed about my donation page on my blog. Let me give you a few examples of some of their grievances with my donation page…
The first one…(Posted on The Gardener’s Cottage blog)
- AnonymousDecember 12, 2014 at 2:18 AM
Swear to God, this is the exact comment I read about myself tonight. So, I am not of the school of thought to ignore things and they will eventually go away. No, no, no, I like to charge full steam ahead and open this can of worms and confront these misconceptions. And then, I like to get really dirty and vindictive and call the person a fat fuck. But, back to my point. I think it’s important to open this dialogue… And discuss it. So here we go… Yes, I do have a donation page. If this reader knew anything about ALS then she or he would know that ALS is the most expensive disease on earth.. I was not lucky enough to get a disease that has a slight fighting chance of survival. No, you fat fuck, I was unlucky enough to get a disease that has rendered me completely useless and unable to do one single solitary thing for myself with no cure, no hope, and an 80% chance that I will die this year. No one has ever survived ALS. So, seeing as though your comprehension is at a fourth grade level, let me break it down some more for you.
I cannot breathe on my own so I need a 24 hour breathing machine: $1200 per month.
My diaphragm pacing surgery cost almost $110,000.
My emergency feeding tube surgery in Paris was €5000.
My feeding tube formula costs $300 for 24 packets plus $200 to ship via FedEx to France.
My ALS medicine, Rilutek, costs $1200 per month.
My motorized wheelchair cost $20,000.
My regular wheelchair cost $1400.
My caregivers cost $5000 per month. Sometimes more.
I have a specialized computer and a specialized voice recognition software, it ain’t cheap.
Massage therapy, vitamin drips, hyperbaric chambers, infrared saunas, acupuncture, vitamin supplements and physical therapy ain’t cheap either.
This is just the tip of the iceberg of my ALS related expenses. It is a struggle every day to pay for everything on top of just living normally. I just happen to write my blog about all the good stuff in my life… Not all of the bad stuff… So maybe that’s where you got confused, you fat fuck.
Now, let me explain a few more things to you Madame Anonymous… You ever so lovingly called me “snobby and snooty.” However, just because I like an 18th-century French gilt mirror, that does not automatically make me a snob. It means I have really good taste and you don’t. Such is life, don’t sweat it so much. You need to be you and let me be me. By the way, your insecurities are shining through.
Let’s discuss your statement about “having Ebola and other people who die of ALS from lack of medical care.” First of all, I would love to have Ebola… It’s treatable. ALS is not. Secondly, you don’t die of ALS from a lack of medical care. You die from ALS because there is no cure, regardless of how much medical care you have. I could have all the expensive medical care in the world and it isn’t going to save me from ALS.
Regarding my Napoleon wallpaper… First of all it was not the “auction of the century.” I’m pretty sure there was a Francis Bacon auction that was slightly more lucrative, you fat fuck. Secondly, the starting bid for the wallpaper was €150. The final bid was €1000. That is not a jaw dropping, record-breaking sale. You have obviously confused my enthusiasm. My enthusiasm was directed at the historical component of the wallpaper, not the price. And by the way, it was my Christmas present for what is most likely my last Christmas. I also wanted to pass down something meaningful to my daughter.
Let me address your other sweet compliments… I do not have “troves of high-end clothing” as you suggested. I happen to only purchase clothing that has quality… Not quantity. Again, just because I have good taste does not make me a bad person. My cashmere sweaters have a message for you… Go fuck yourself.
You ever so lovingly said that I “routinely eat at some of the most expensive restaurants in the world.” I am laughing at this because I wish I could go out to dinner “routinely.” However, you fat fuck, I only go out to dinner for the very most special occasions. Obviously unbeknownst to you, people with ALS have an extremely hard time swallowing. So, for me, going to a restaurant is basically for ambience alone. I can only take a few bites of food or otherwise I will choke and die, you fat fuck. I am mostly fed through a tube in my stomach. Do you regret what you said now? You should. I am laughing because I am envisioning you sitting at your desk writing these horrible comments to a stranger as you are most likely cramming Dunkin’ Donuts down your classless throat. However, let me state for the record that I love Dunkin’ Donuts.
Next up… Health insurance. You mentioned that “the world is full of people who get minimal healthcare in America and healthcare is sometimes not guaranteed at all.” Well guess what, I am one of those people. My insurance was canceled and after I tried to reapply I was refused healthcare because of my little “pre-existing condition called ALS.” I have only started receiving French healthcare last month as it has taken us 1½ years to get through all the French bureaucracy, not that it is any of your business.
A few other comments suggested that I had no class for having a donation page. Well, let me tell you something… I have more class in my paralyzed little pinky finger than you do in your entire body, you fat fuck. You know why I have class? Because I have never once mentioned on my blog that no one, and I mean no one in my family has ever helped me financially with my ALS expenses. Not my mother, not my father, not my sister, not my aunt Anne or my cousin Julie. These were the people closest to me and these were the people who completely abandoned me. My husband David has paid for every single expense for my ALS. I have a few friends who have helped and for that I am thankful but the bulk of the weight is on my husband. I cannot work, I cannot earn an income and every day I cost more and more. On top of all of this, I have a daughter to support. Just because I have led (past tense) a privileged lifestyle compared to yours does not mean that my current situation is a walk in the park.
I do not live a lavish lifestyle. I just happen to have excellent taste. I have the same four walls that you do, I just choose to make mine pretty. And by the way, no, we would never be friends, as you say, because I would never be friends with someone who writes misinformed rude comments anonymously on someone’s blog.
Here’s a few things you don’t know about me, you fat fuck… I am always for the underdog. I give more than I take. I say a pray every single night for those less fortunate than me. I have spent every last nickel that I have on Gracie’s education. Before I got sick, I always worked at my jobs proudly. Some of my friends are rich, some are super rich, some are middle-class and some are broke. I like them all equally. I choose my friends based on their character not their pocketbooks. My friends come in all shapes, colors, sizes, socioeconomic classes, cultures, religions and backgrounds and I feel honored to be loved by them all. I am the furthest thing from a snob. My idea of the perfect day is taking the subway to the flea market, finding a bargain, eating a Moroccan sausage, smoking a cigarette and laughing hysterically with all my friends. It physically hurts my heart that I cannot respond to all of the kind emails that I get. I am constantly worried and tell my husband that I don’t want to hurt anyone’s feelings by my inability to write letters to each one of my readers who write me kind emails offering prayers. My friends know this about me and will defend my character ferociously. I go “without” every day… I just don’t complain about it. Yes, I said in my blog that my husband brings me a present every day. That present is most likely a jelly donut. You are very confused as to what I value in life and have obviously mistaken who I am. I value Gracie and David, my friends, my pets and way down on the totem pole yes, I value my beautiful antique furniture. You know why? Because I spent years studying the history of furniture and yes, the Louvre and I see the importance of antiquities, you fat fuck. A donation page was set up for me, not by me, and I have never asked you for a donation. Trust me, if I didn’t have ALS I would be wallpapering my dining room in Zuber, instead of paying strangers to take care of me. I do not choose to live in Paris. My husband works here. If I had my choice I would be in a cottage by the sea tending to my roses and ignoring fat fucks like you.
So, Madame Anonymous, next time you want to judge someone like you judged me today… Here’s a little advice. First of all, state your real name and don’t hide behind “anonymous.” If I have enough courage to write this blog as honestly as I do, I expect the same transparency from you, you fat fuck. Secondly, before you judge someone, do a little research so you are at least somewhat intelligent about your topic. Lastly, walk a day in my shoes. I dare you, you fat fuck. Live a day not able to hug your daughter, live a day wondering if it is your last, live a day unable to move one inch below your neck, live a day having to have someone carry you to the bathroom, live a day with panic attacks so bad that you think you’re having a heart attack and have to be medicated, live a day having to gasp for every breath, live a day with nurses having to give you a bath, live a day without your dignity, live a day without your independence, live a day wondering why you got the worst disease on earth. Until then, you fat fuck, I suggest you try to find the good in your own life, live every day with joy and laughter, find some peace and solace, be kind to others and refrain from writing poisonous words to strangers, you fat fuck. Love, Ellie