I promised myself I would never take so-called negative comments to heart, but I had to write about this one.
There are a handful of nasty comments in response to the aolhealth.com post on me and my life with Epilepsy. I thought I would share, so here goes…
“…why do people who have these disorders, which they themselves describe as horrible, life altering, etc., continue to breed. Why do they do this? Yes, she happened to have a “normal” child, but so many do not. These become the “million dollar babies” which suck the system dry. There are many children waiting to be adopted. Selfish, stupid, these are only some of the thoughts I have of them. I work in an emergency room, and after seeing some patients with these chronic, inherited diseases, sickle cell, etc., who come in in agony, screaming with pain, and then see them pregnant, it makes me want to scream myself. What are they thinking? This is not an inspiration, this is selfishness. Go out an volunteer with children who suffer from epilepsy, don’t potentially make one!..” (August 1, 2010)
Selfish? Stupid? It’s one thing to insult my blog or my choice of posts…or even how I look, but when someone insults my child, or my choice to have a child, that gets my blood boiling! I guess I never looked at my desire to start a family as selfish or stupid. And, I think it makes sense to review the facts.
First, according to the Epilepsy Foundation of America, in 70% of all Epilepsy cases, there is no known cause. The Foundation has a lot of information on its site that points to this. There is a lot of research going on right now to figure out the genetic link to Epilepsy. I have Hayden checked very carefully by her pediatrician each year, and my epileptologist (as a favor to me) does his own bit of checking as well. Do I worry that I might have passed my disorder on to my daughter? The answer is simple…yes, every hour of every day of my life. But, I have also done a ton of research on this and I know that the risk is ever-so-slight since I was diagnosed in my early 30′s after suffering from encephalitis and meningitis.
I worked closely with my epileptologists at the time, the team at Johns Hopkins in Baltimore, and I also worked with a high-risk OB group at Hopkins. My pregnancy was carefully planned and incredibly watched, week-by-week.
As for my child, I pride myself on the fact that she has just as normal a life as her friends and classmates, and I work very hard at this. Does her mother have seizures? Yes, but she is cognizant of that and she knows how to react. I surround myself with people who understand and care, from my husband to my very, very close friends. So, I never worry that she is deprived of love and attention.
Will she one day have Epilepsy? That remains to be seen. I don’t know that anyone can reasonably predict this, not even my epileptologist. But, if that does happen, we are prepared, and I have a hard time believing she will become a ‘million-dollar baby’.
Ken
August 9th, 2010 at 9:51 am
Epilepsy is what ive been fighting with twenty years, therefore I know what it is to have it and its no fun. I do not wish Epilepsy on even my worst enemy, but people who think like the shallow minded invalid who left that comment should have to experience it. I bet they don’t even know that anybody could develop epilepsy at anytime in their life. After all I never had it til I was 20 years old. Now 38 and it is finally under control.
Kim
August 9th, 2010 at 10:32 am
Wow. I had no idea people were this ignorant and rude. I had to pick my jaw up so I could leave a comment… This ONLY proves that more awareness is needed for epilepsy so we can educate those who have no clue.
Greg
August 9th, 2010 at 10:45 am
This is why we have so much farther to go with respect to educating the masses. My fears have never been whether or not I would pass epilepsy on to my children, as I am 99.99999% certain that my epilepsy is the result of the severe head trauma I suffered as a child. My fears have always been “when I have a child, what would happen if I seized while holding my child and hurt it… dropped it…” “What if I have a non-nocturnal seizure while driving – hurting my child… hurting someone else…”
I think about the what-ifs all the time.
Now I have a NEW “what-if” to think about. What if this ignorant, narrow-minded moron (sorry, that’s how they strike me) breeds. Will their children turn out as ignorant, prejudicial, and narrow minded as they are? That scares me more than all of my epilepsy fears put together.
Anna
August 9th, 2010 at 7:10 pm
Grr. People like that make me wish transorbital lobotomies were legal to perform by myself.
The human body is flawed, people. Someone else once hypothesized that the human race could be perfect; that careful genetic planning could save us from dealing with things like seizures, deformities, etc. That no one who was different should “breed”.
Who?
Hitler.
bryan farley
August 9th, 2010 at 9:10 pm
@anna,
it is worth remembering, that hitler also went after us first, and others like us. we were the experiment before the experiment.
and some people spoke out, but were silenced. very few resisted.
so, in some way, I am grateful for the person who commented on Alysse’s blog. it is a reminder that we are not just imagining prejudice and discrimination.
many people do not understand us. many people would prefer that our kind stop procreating. and if we stopped procreating, somehow, we could be eliminated.
Problem solved… just make us go away.
Is it any wonder that so many of us stay quiet?
Heather
August 11th, 2010 at 11:34 am
Wow! I am shocked! She says she is a Nurse – no Nurse I have ever met has ever been so uncompassionate! I don’t want her taking care of me if I was in the hospital. I don’t even have Epilepsy and am very disapointed in this person’s thinking! Whatever happened to “If you have nothing nice to say, say nothing at all.” It is people like this that should not breed, not the other way around!
Susan
August 11th, 2010 at 10:04 pm
I have never been so disappointed in the ignorance and rudeness of one who works in the healthcare field. For a comment to me made like that it truly does make me so happy I am not a patient in that ER. She in my opinion is not what a Nurse is or even stands for. Someone needs to educate her and now! Alysse your a Wonderful Compassionate Person and I am honored to be a friend and I know and can see that you have Raised an Amazing Daughter who because of you will go far in this world!
Kasey
August 13th, 2010 at 12:53 pm
Unbelievable! I bred and have a six year old daughter with epilepsy that started when she was three…I have no history in myself or my husbands family of epilepsy! So what is the nurses answer for my situation. People are so ignorant…
M/M
August 13th, 2010 at 9:49 pm
You’ re kidding me?! I have never heard anything so stupid in my life. As far as I know there is no genetic link to Epilepsy. This nurse’s opinion is pure ignorance!