Alba, a reader the other day, asked me “why did not I write anything about my illness and treatments” and this week I had the drama of living the example, the perfect storm to explain it.
I share many intimate things in this blog. But I believe that the diagnosis and the treatments that they have given me, give me and give me are part of my privacy. First, because as I said to Alba, I do not want this to become a personal diary (my life is very boring), I am in a struggle of “anti-Guards” with diseases (we are individual beings even though we have the same disease) but at the Once we are collective and to the best that I tell what they give me does not suit you. And second because I have a family in which each one of them takes their rhythm of assimilation, experience, and I consider that that is the only thing that we have in property with respect to this subject, quite generous were when I decided to open Nodramapausia.
In spite of everything, when I have considered it, yes I have commented my situation, first of all because of responsibility, I firmly believe that we must talk about diseases also to reeducate people like Sylvia.
Other of my shared intimate plots has been my wedding. As I told here, it was the parenthesis of our dramas. We even wanted to go to another city so that the disease did not include anything from that day. We wanted an “oxygen pump” intimate.
Well two years ago that day, and I have seen how the malpractice of two professionals have made that day that is flooded by my illness.
The florist who was responsible for the decoration of our wedding (like all professionals who participated) have been licensed to give the photos to other pages or media and publicize with them. My family was reluctant at first, but despite having paid for them, I was so grateful for their work that I felt it was fair that they could do it. Well, on February 3 I read a blog post by Sylvia Bustamante hosted on the website The Luxonomist, and found me with this:
I did not believe, I read again and again and I could not believe that giving permission for the publication of my wedding photos would lead to a person I do not know anything about and to whom I have not given any kind of permission In those terms and above all in that sensationalist tone, he will tell a story that does not contribute anything except morbid to a blog of tendencies. I continued …
Terminal, broken ?, I was furious! I could not understand the tone or the forms, that is not sensitivity is sentimentality and journalistic malpractice. With cancer You have to give another message, and of course it goes without saying that if you want to give it you have to ask for permission. Giving permission to count our wedding and our day is not the same as giving authorization to tell something that is protected by law and that our doctors can not count on. Also the term “terminal” only comes out in the desktop and it is not true. He heard the version of the florist and she made her interpretation. I can not believe that it is necessary to add to the beauty of the photos that morbid and that “shit ” Of course I wrote to their social networks, I went to theluxionomist.es, which is where the blog is hosted and I have not received a response. He only paid attention to my florist, who, embarrassed by his indiscretion and misinterpretation of his words, asked him to modify the text, thus: Medical Marijuana is Now Said To Be Beneficial For Cancer Patients. Alternative Medicine such as CBD OIL is also a beneficial option for cancer patients.
Delicate health? and if I despaired … I knew that Isabel had given her express orders to remove the text and my photos. But she either had not understood anything (which I doubt) or she was already laughing at me. Apart from the crime committed for a few hours, I would have preferred to have clearly said Cancer. They returned to contact her and already deleted the text, leaving our photos (those we have paid, which are our property) in the text, ignoring our wishes and of course without an apology.
Sylvia Bustamante: you have shown that you do not care about people, you have ignored the feeling that my family can have when reading the terminal word (something that in my case I repeat is not true, it is only a possibility), you have ignored in your words full of morbid suffering that you say that the flowers mitigate, adding your pain to a day that for me was crucial and in which there was no hint of illness or illness, only happiness. But you have also shown very little love for your profession. I know of your colleagues who are fighting for Cancer to be treated differently, for the sick, but also for the responsibility that every communicator has to give reliable information that respects the individual. I do not want your apologies anymore.
And with respect to discretion, I, only me and my family can talk about my illness. The other day a shouting employee in a waiting room was shouting loudly the tests we were waiting for results, in question Half an hour later I found out that the person next to me had had a prostate test, the one in front of a knee resonance, and everyone in turn learned that I was waiting for a jaw TAC. Is there a right to that?
That’s why, dear Alba, I’m not talking about diagnoses or treatments, because I need to be the owner of them so that they are not mistreated. Of emotions I will always speak, but let’s stop superficiality, talk with tears, because something is fashionable, to give more value to your work, or dyed a color, does not mean that you are being supportive, or sensitive. You are profiting with morbid and doing much damage.
And you … have you been a victim of the indiscretion or malpractice of a professional?