What Exactly is a ‘Normal’ Life with Epilepsy? It’s a Matter of Opinion…
One can say that it’s a matter of opinion, but we are all entitled to our own opinions, isn’t that the case?!
I caught this story this morning online. It’s a wonderful article about a young man in Oregon who lived with Epilepsy for years, until he underwent surgery. He’s now seizure-free, which is truly a blessing for him and his family. He’s a gifted student and young golfer, and he is accomplishing many of his goals, both academic and athletic.
Photo Courtesy of 'OregonLive.com'
I applaud this young man, and his courage. And, this is in NO way a post that is meant to be critical of him! Most of you who know me and read my blog(s) know that my philosophy is to remain very positive about this condition, or we won’t be able to move the needle in terms of advocacy and research.
But, as I read the article a few times, it struck me…shame on the writer! More than once, he portrayed this young man’s childhood and teen years as ‘not normal’ because of his Epilepsy. He wrote about how his family just wanted him to lead a ‘normal life’ and since his surgery he ‘has been able to live a normal teen’s life’.
For those of us affected by Epilepsy, there are so many obstacles involved. But, shouldn’t we be emphasizing how you can lead a ‘normal’ life if you have Epilepsy? Or…you can strive to make your life as normal as possible with the help of doctors, friends, family and advocacy groups. At least that’s the philosophy of many doctors and organizations. I know I will be criticized for this comment, but if we continue to push the issue of, ‘look at me, I’ll never be normal’…isn’t that a detriment to us? Everyone’s Epilepsy is so different. Some seizures are so much more severe than others. We all know this. But, if we sink into the background, all of us, and reiterate that we are not normal and we will never be normal, doctors and researchers might as well give up the search for new treatments and a cure. And, the wonderful organizations that provide support and care would cease to exist.
I wish this reporter would do a follow-up story and seek out people who are making a true effort to live the fullest and best life they can live–and, they live with Epilepsy. I for one am not ashamed of my Epilepsy and my seizures. I’m proud of the fact that I share my story with others. I think it can only help the world understand this more.
5 Responses to “What Exactly is a ‘Normal’ Life with Epilepsy? It’s a Matter of Opinion…”
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Jeff Nelson
May 19th, 2010 at 11:43 am
I had a report written on me about my “E” a while back, and before the journalist made their edits, we had many discussions brought about by myself concerning some of the statements made within the report. Mostly concerns over words such as ‘normal’ and things of that nature. I told the journalist I was very worried about producing or keeping stigmas, and myths about “E”. So…in effect, I do understand where you are coming from. However, not to be too critical, but I do believe that it is the fact that we are NOT ‘normal that actually makes doctors and researchers look for new cures and provide support rather than the opposite. As we all know, it’s the squeaky wheel that gets the grease!…not the normal one. I think doctors and researchers are looking for the squeaky wheels rather than the normal ones. I see myself as abnormal, or living an abnormal life despite my Epilepsy, and I wouldn’t recommend others see themselves that way either. However, when concerning treatment, we have to face the fact that many of us are in need of abnormal life conditions. There is a little girl in the town that I live in that also has E which is affected by sunlight. Her parents have to keep their house in dark shades, with a playground inside. I wouldn’t exactly call that normal, and because of that I think doctors and researchers want to know more. But, I guess in the end, we could call every human condition or behavior ‘normal’ if we look deep into the philosophical debate of what normal actually is. It’s just a generalized, relative word. So…after the journalist made her report on me, I was aghast at the edits and wording. But, after thinking more about it, I realized many of the words were exactly that….generalized and relative. I don’t worry about folks who are extremely ignorant, only the smart ones. So for myself, the report was water off a ducks back.
physician assistant
May 20th, 2010 at 12:29 am
this post is very usefull thx!
Eileen
May 24th, 2010 at 1:05 pm
hmmm… This is an on-going debate. We focus on what’s wrong to make it right but if you spend all your time looking at what’s wrong and what you can’t do (drive, remember what you did last week when you had a siezure, etc., ) you will be miserable and that’s not healthy, right? No wonder 50 % or more of people with the disease are depressed.
We need to maintain a healthy balance and make the illness public at the same time. We need speakers, celebrities to be public representatives for the Epilepsy cause to make the general public aware of this illness and focus on cures. Why don’t we have one? Is it because there are absolutely no celebrities who’s famillies have been affected by this illness? Doubtful. Why is it we can find celebrities to stand up and motivate donors at every other fund raiser possible, from abuse, autism and anorexia – Breast Cancer and crohn’s disease, diabetes, fertility, HIV/AIDS…the list goes on…a celbrity for every cause. …except Epilepsy.
Why? Someone tell me why.
Steve
May 28th, 2010 at 9:02 am
hmmm… This is an on-going debate. We focus on what’s wrong to make it right but if you spend all your time looking at what’s wrong and what you can’t do (drive, remember what you did last week when you had a siezure, etc., ) you will be miserable and that’s not healthy, right? No wonder 50 % or more of people with the disease are depressed.
We need to maintain a healthy balance and make the illness public at the same time. We need speakers, celebrities to be public representatives for the Epilepsy cause to make the general public aware of this illness and focus on cures. Why don’t we have one? Is it because there are absolutely no celebrities who’s famillies have been affected by this illness? Doubtful. Why is it we can find celebrities to stand up and motivate donors at every other fund raiser possible, from abuse, autism and anorexia – Breast Cancer and crohn’s disease, diabetes, fertility, HIV/AIDS…the list goes on…a celbrity for every cause. …except Epilepsy.
Why? Someone tell me why.
Abby
June 16th, 2010 at 9:36 am
I had a report written on me about my “E” a while back, and before the journalist made their edits, we had many discussions brought about by myself concerning some of the statements made within the report. Mostly concerns over words such as ‘normal’ and things of that nature. I told the journalist I was very worried about producing or keeping stigmas, and myths about “E”. So…in effect, I do understand where you are coming from. However, not to be too critical, but I do believe that it is the fact that we are NOT ‘normal that actually makes doctors and researchers look for new cures and provide support rather than the opposite. As we all know, it’s the squeaky wheel that gets the grease!…not the normal one. I think doctors and researchers are looking for the squeaky wheels rather than the normal ones. I see myself as abnormal, or living an abnormal life despite my Epilepsy, and I wouldn’t recommend others see themselves that way either. However, when concerning treatment, we have to face the fact that many of us are in need of abnormal life conditions. There is a little girl in the town that I live in that also has E which is affected by sunlight. Her parents have to keep their house in dark shades, with a playground inside. I wouldn’t exactly call that normal, and because of that I think doctors and researchers want to know more. But, I guess in the end, we could call every human condition or behavior ‘normal’ if we look deep into the philosophical debate of what normal actually is. It’s just a generalized, relative word. So…after the journalist made her report on me, I was aghast at the edits and wording. But, after thinking more about it, I realized many of the words were exactly that….generalized and relative. I don’t worry about folks who are extremely ignorant, only the smart ones. So for myself, the report was water off a ducks back.