I tried to be nice by politely ignoring you, but I fear that isn’t going to be enough. I was surprised to hear from you about your wanting me to stay away from helping out the Valik family. I think you have a couple of things confused, especially the part about my letter having nothing to do with you. So I’ll respond, since you took the time to write a large amount about it to me. About the discrepancies with the reading:
As you know, I actually arrived in time to do my reading, although by the time I got there it was to be done in the next five minutes. My harrowing trip had involved a seven hour bus trip and then closed roads into the city in which I had to get off of my bus midway, and then take a train, and then, in a panic, walk with my luggage the rest of the way because downtown Toronto was such a mess at the time, only to arrive and have you say that I had been moved to 5pm, and then at 5pm, told that I would be “fit in” somewhere, which made me a nervous wreck for hours. You assured me that you would reschedule it for later, and then didn’t. I had to get a friend of mine, Leslie Rader, to advocate for me in order to get you to LET me do the reading at all! In any case, I don’t even know why you brought these things up, other than to be petty.
The real issues here are much more important. As far as people being “offended” by my reading—that was the point. If people are not upset about something, then they don’t discuss it, and then nothing changes. I am in the business of changing things for the better, not “treading lightly,” and I daresay that I’m not a bit surprised that one of the “offended” doctors now works at the Cincinnati Hospital! They DO seem to care more about manners than patient care!
If my way of doing things gets some feathers ruffled—GOOD. It should. That’s how change happens.
Yes, I reached out to you for money, because I remember that the $100.00 deposit that was required on the [supposed to be free] room at the Royal York was covered by you out of your own pocket, which you made known publicly ad nauseum, as if my overwhelming gratitude was not enough for you.
So, in this case, I thought that you might chip in again—“It can’t hurt to ask!” I thought to myself. Right now, I live well below the poverty line with three children and don’t even own a car, but I have no pride or shame about asking for money when a cause is extremely serious, and so I did.
You declined to help.
I thought that’s where this conversation would end.
But no, you had to shame me about asking for money, and then go so far as to try to discredit my reading from four years ago, saying, “You did not ‘speak’ before doctors from 25 countries.”
I’ll reference my original letter here, because what I said was this: “I have spoken at an International Congress that had doctors from 25 countries there about this disease,” which is absolutely true. I was in fact “SPEAKING,” because words were coming out of my mouth, and I did address many Doctors, who attended the Gala. This is a good time to point out that YOU APPROVED this reading, this speech, MONTHS before the event! I remember emailing it to several of your staff, in fact—none of whom thought it was offensive or asked for any changes. I’d also like to remind you that the response, although there may have been a few nay-sayers, was overwhelmingly positive.
I made my e-book free internationally that weekend in lieu of a donation to Debra Canada or Debra International and my ebook, Kidowed, was downloaded over 5,300 times in two days, the speech was so powerful. My e-book was #1 on Amazon’s Author Central site worldwide in the category of Nonfiction Memoirs out of millions of e-books for a short time during that weekend, because so many people were downloading it.
So, you’re welcome for the free publicity and donations. I’m sure if you had dealt with the few negative reviews that you got with grace and professionalism (and standing behind your speaker instead of at the end of her speech trying to skewer her with a drunken surprise “Devil’s Advocate” round of questions), you’d have had a different outcome.
As far as your comment that implied that I don’t know what I am talking about because my children had a different type of EB than Jackson when I made the statement that he will most probably die young? Average life expectancy of a person, according to my research, with RDEB falls somewhere around 30 years old. That, in my country as well as yours, is still considered “dying young.” You seem to be minimizing Jackson’s medical problems just because you had a different experience with your mother. That kind of logic is ridiculous.
Another kind of logic that is ridiculous is that you seem to think that I am somehow “anti-medical professional” when it comes to EB. This is not true. There are some doctors that are making vast improvements in the way that EB is treated right now, and I applaud and support their work. My book, which you clearly didn’t read, was not specifically about the medical profession as it relates to EB, and this is not a cause for me. Therefore, I was surprised that you used the word “ally” when you told me not to help the Valik’s. I think you misunderstand several things, so I’ll spell them out for you:
- This is not a “war” and it is not about having “allies” or being against the medical professionals and hospital staff. It’s about helping a little boy with EXTREME special needs who lost his mother three months ago.
- I will continue to HELP and ADVOCATE FOR the Valik family as long as they allow me to.
- My letter had NOTHING TO DO WITH YOU, and you might want to check your ego at the door the next time you go about with your version of “helping” people.
Thanks, Gena. I really hope you get where I’m coming from.