I love quotes…I think they sum up any situation in such a brilliant way.
“Dwelling on the negativity simply contributes to its power.”
Shirley MacLaine
During these last few months, I’ve been stunned at the bitterness and negative energy conveyed in the Epilepsy Community. Don’t get me wrong, I hear from many fantastic and lively people each and every day. AND, I love chatting with all of you. But, it’s the sadness and the hopelessness that is truly difficult to take. Sometimes I wonder how we can continue to push our cause with the people who matter if we can’t all be on the same page?
Why should lawmakers or healthcare workers help us if we can’t help ourselves? There are no easy answers when you have a disease or an illness that has no known cure. In other words, you must search for the best treatment, the one that suits you. If that’s a diet-great. If it’s a medication, excellent. A combination of anti-seizure meds, could be the answer. If it’s surgery…lucky for you. But giving up the fight, and blaming the government or the Epilepsy Foundation or even the healthcare system in general, doesn’t seem like a viable answer…at least from my vantage point. And, in terms of affording treatment, when my doctor tells me stories, he always indicates to me that there are ways for patients who can’t afford treatments, whether there are samples available or drug trials. There are ways to treat under-insured patients with Epilepsy.
So, it’s a new year, and perhaps it should be a new fight? We can be stronger and mightier if we band together. It’s cliche’, yes, but I think it makes sense.
Becky F.
January 19th, 2010 at 10:02 am
I agree, finding the strength to fight the good fight is pretty hard and to continue it day after day takes it’s toll on the strongest!
But if we don’t try to keep moving forward, we only go back!
Only we can change things, we can’t leave it to others!
Becky
Louise A.
January 19th, 2010 at 11:49 am
I feel like most of the conversations I have with people are about how to make life easier and better. The only negatives are when we have been fighting for better health care… we sort of have to tell it like it is. That’s my take on it, anyway. Thanks.
Jeff Nelson
January 19th, 2010 at 1:15 pm
Okie dokie! I think the last sentance in the first paragraph of your blog is the most important…..and it does bring a few questions to mind. You state, “How can we push our cause with the people who matter if we can’t all be on the same page?” I’m assuming our ultimate ’cause’ is to find a cure for E, and the people who ‘matter’ are doctors, lawyers, and congressmen, etc. I’m sure there are others behind the green drapery, though I think the people I’ve mentioned would be pulling the strings for us. So, the questions I have in mind are, what are better and more powerful ways of pushing our cause besides making online statements and walking the once a year E walk? How can we put our illness into the mind of the nation so as to rid ourselves of stigmas and get more doctors to look for a cure? Of course we all want a cure, but before there is one, in order to band together, we should define what page we are on, what we want, and what we ‘need’ people to know about E. Is it a page that says we will write to governers, senators, and congress as a band of E’s? If so, that’s millions! If not, I don’t want to sound negative, but I don’t think we’ll see much radical change in the healthsystem, or especially people’s knowledge of E. Don’t mean to sound cliche’, but “You say you want a revolution….well you know!” John Lennon