[mamaof6]

Hello everyone, I hope you all had a safe and wonderful new year. My holidays were filled with miracles and love it truly was a wonderous season for me and my family.

This is a rather long post...no questions, just some thoughts I had. I do not have a blog or any other website to currently post this on, but I so wanted to share it with others. I hope it helps anyone else out there going through the same things I am currently struggling with.


I was up late last night, thinking about all the things that have happened in the last month and a half to myself and my family. I think it is the realization of what is facing us setting in actually. When I first came home from the hospital, I was just so happy to be home with my newborn, and so intensely curious to know about what was going on with my body, my brain specifically, that I spent hours online,and the rest of the time was spent with my six beautiful children. I was content...to say the least. Then, right before Christmas, my attitude about my szs, and other brain diseases started to change. I began to feel pity for myself. I know we all probably have done this, and it truly sucks to be in that situation. The world looks hopeless, like we cannot change anything and we want to know why me?? What did I do to deserve all this?

I am not through this stage as of yet... It is a struggle everyday to deal with it all, and in the morning the first thing I think of is will I have a sz today? Or will something else go haywire up there?? But I know I will get through this all...I will accept, adapt and move on. It is just going to take time.

As I was sitting there last night writing this pitiful email to my friend and filling her in on what was going on, I realized how unfair this disease and the causes and effects of it truly are. (Before I continue please be aware I am in no way diminishing the seriousness of any other health issue...) We as people living with epilepsy, and other brain diseases, have all these side affects just from the disease themselves, and then from the treatment options available. None of which ever typically leave us as the person we were before it all began. It seems to me, and I am having a difficult time phrasing this, that people suffering from brain disease are getting the short end of the stick so to speak.

We are all born with one body, made up of the organs, and cells that are supposed to sustain our lives for 80 years or more. It is our job to take care of them, and make sure we live as long as we would like. We can eat healthy foods, to avoid heart disease, we can regulate our diets to control diabetes and the symptoms of that terrible disease. We can essentially control in most cases whether other parts of our bodies remain healthy and functioning well. If we decide not to, or if nature decides even after our most valiant efforts that our heart is not going to work or our kidneys are going to caput, there is still so much the medical community can do to extend our lives, and keep our quality of life high. Transplants, surgeries, medicines, and other medical procedures.

Unfortunately, just like all the other vital organs, we are only given one brain. The medical community knows so little about that organ, and it is by far the most complex organ , and in my opinion the most important organ in our bodies. We cannot have a "brain transplant" and the treatments available for the variety of diseases are somewhat limited, and unfortunately not effective for everyone, because everyones brain differs, that is what makes us individuals.

When our heart races, we know it, when it skips a beat we are aware, when it is difficult to breathe, its obvious to us. But, when our brains start to "act up" most of the time we are clueless. We blame symptoms on other parts of our bodies ignoring the most vital organ that we have, as do our doctors.

Our brain controls everything. Its like a computer, without it, we will most certainly crash. And when it is not functioning properly, we will not function properly. Our brains typically our not on our minds, even though they are where are minds are located, ironically.

Once as an individual we are diagnosed with epilepsy and any other brain disease, we begin to realize how delicate our human forms truly are. We realize that the simplest of things can become a monumental task. We realize how fragile this entire network that runs our bodies truly is. That is a huge realization to face. The uncertainty of it all is beyond overwhelming, the what ifs drive us mad, and the search for knowledge and answers almost becomes obsessive. So many times though, we are not given certainty, we are left to deal with the unknown, the what ifs only multiply, we have to deal with things on a day to day basis, and unfortunately answers seem to be lurking just out of our grasp.

But, the most amazing thing I have witnessed since all this began for me almost two years ago, is that the people who suffer through all these things, become the most sensitive, intelligent people I know. They respect life in a different manner than anyone else. We are aware we are walking ticking time bombs, and we try to treasure the time we have here. Even though there are days we cannot get out of bed, because the szs were so bad they exhausted us, or left us unable to function for a few days. We recognize the beauty of life and the world around us, even though we know at any time we could be thrust into another world by our malfunctioning brain and not even be aware of reality anymore. We treasure the functioning time we have, and feel blessed for every moment of our lives that seem to not be affected by seizures and other brain impairment.

I am not a scholar by any means. And my brain is not functioning like it used to even two years ago. I am fully aware of some of my limitations, and am learning new ones every day. I understand there are things I can do to help improve my situation, and I am trying to do those as well. But it is a slow process isnt it? At times it seems so hopeless and pointless to do the brain teasers and the crossword puzzles. It is frustrating when you are talking to someone, and then suddenly your thoughts just up and skadaddle on you and you are left with your mouth hanging open, and your mind racing, chasing after those elusive thoughts and words trying to find where they went.

But we must overcome all this, and recognize what we are blessed with. It is different for all of us. I am not going to tell you what you are blessed with, we are individuals and we all lead very different lives. But the one thing, the most important thing I have learned is to discover what we have that is a blessing in our lives and hold on to it. Be proud of it, and shower it with the attention, respect and the devotion it deserves. By doing this, even though our world seems hopeless, and we do not know what is going to happen, we will not drown in our own individual puddles of self pity. We will be able to feel sorry for ourselves when we need to, but still be able to see the brighter side of life.

Amanda
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[Ellie]

Amanda,

Thanks for sharing your thoughts with all of us. I doubt there's anything I can do to make any of it better for you. But what I can do is say, I have been there - I have been there several times. A lot of us have.

I don't know if you've made it to the other 'there' yet, but there's another place we all frequent that many people call denial. I randomly go through phases where I forget or block out the details of my last episodes and question my own sanity. I wonder if I am being too observant, too aware of my body that I am paranoid and over-analyzing everything it does. Heck, I have medical proof something is wrong and I will still question myself. Was it in my head?

I'm fortunate enough that I am yet to find a doctor who accuses me of being quote/unquote crazy. Probably because I beat them to the punch and ask if I am. I think my memory is so unforgiving I forget half of my episodes and end up wondering if I've misplaced my marbles along the way.

I was reading last night something that touched home (I'm a huge fan of Augusten Burroughs). He had overheard a conversation two women were having and one mentioned palpitations. From that point on, he said he was fully aware of his heart beat whereas before, he never noticed it. So that started a mild obsession which turned into him essentially thinking he had a 'crappy' heart.

Having said that, I know I over-educate myself on things and I try my best to be aware of my body but not overly aware that I let it ruin my life. While sometimes I view myself as my worst enemy; I have to just let it go sometimes and try to live. I've had days where I was horrified to go outside because even feeling a little woozy had me convinced I'd have a public episode and be too ashamed to visit wherever it happened again.

I have days I hate myself, I hate my brain, I hate my body, I say naughty things to God, and a lot more. I get so angry because although I have supportive people in my life, they just don't "GET IT" - I want them to educate themselves but they only take in half of what I say.

At the end of the day and my pity party, I realize I am alive. And the time I spent griping someone else was dying of a more serious condition. I take my time here for granted a lot of the time, but I try to remind myself I am very lucky that I can walk, I can talk (and complain) and do things many are not fortunate enough to be able to do.

It's not me giving up or giving in, but I guess making a compromise with my brain. I will adapt the best I can every time my brain changes, but I won't ever let it take away my life. Epilepsy isn't my only condition and in the past year I found more unpleasant things in my life, but along the way - I found more people worse off than me and I felt selfish for being so angry when I could be crippled, or blind, or unable to speak, or hear and so on. While I have days of being non functional, I can usually get up the next day and be OK where I have friends who will forever be crippled because their disease or illness does not give them an 'off day'.

I feel my (our, actually) bitterness is justified, we don't have to embrace this thing. We can adapt to what it decides to change and hope it doesn't have much of a profound impact on our lives or try or best to not allow it to.

I had a rough day today as I want to go back to college. I think my being 30 years old it's a young age still. But I will face the reality that I have suffered brain damage and will then recall how painful it was for me to literally brainwash myself before to get good grades. I'm worse now, to boot. I am trying to think of HOW I will force information into my brain. I'm afraid of speaking in public because I have problems word gathering now and I am frequently repetitive. But I will do it, I am sure I will. Now that I'm done bi***ing for the day, I am feeling quite positive.

Thanks for the 'push' to get that off my chest. I feel much better now!! I hope you do, too.

[Darlene]

Amanda & Ellie,

Both of those were so touching. I have had epilepsy since I was 12, and at that time it was hard, because of the way other kids treated me. But I did surive the time.

I had a litle bit of a ruff time in giving birth to our two children, in different ways. We had to leave our daughter in the hopital a couple of extra days and that was heart breaking. Then with our son one month before he was born I had a grand-mal( that happen to be the second one I had.)

Ellie, I was about 30 and started back to college, and I manage just fine. At one time I was afraid to speak out in pubic, but not now. Just do what everyone says, imagine that every out there naked.

One thing I have decovered growing up with this, is that I am always there for others out there with really any handcap person to help them along. Especially with Epilepsy.

The both of you are in my prayers and thoughts.

Darlene