SEIZURES, THANKING GOD, AND A RUBIK'S CUBE...

This is one of the most difficult things that any epileptic wants to hear. They will never be able to know what, why, where or when a seizure occurs. The worst thing that any family member, sibling or spouse could do is to get angry at a seizure, and that yelling causes and epileptic to do things so way out of the ordinary that people near you will get hurt as you place yourself in the corner of any room scared at what just happened like a child with arms crossed over their chest and worried about what else may happen.

And it’s never your fault!

Others may blame you for what you just did and continue with the agony put on your head, if you are younger you are probably stronger than the ones who stay with you, day by day - your caretakers. But, others will blame themselves for causing the problem to be worse and those are the ones that you appreciate forever for understanding your situation and they will say “Sorry, I shouldn’t have done this or that to make the seizure possibly worse”. You will feel at blame for your actions and most likely won’t remember what just happened, but others do, so ask them to explain in detail. You will say sorry, always, especially if someone did get hurt trying to keep you safe; and sometimes it can be bad; depending on the level of seizure.

If not we can thank God that the problem you may think you caused didn’t hurt the people around you - The people who watch over you - The people who love you!

You will thank God for things that you should thank God for. That you are alive, the ones you love are not hurt and come home to you every day. I tell my own family and others when they say things like, “Yes, thank God I found my car keys or thank God I found my cell phone”. I say, “Really, is that really what you want to thank God for, not that I’m still here and you're still here, that you woke up from bed this morning, but I can see that that must be very important to you”. And the best part is, nobody ever listens. You put the TV on and the first or last thing you hear in every sentence is Jesus Christ. If you are a religious person as most of you are, you should use his name in prayer or in church, by heart and never use it in vain.  

The Lord, our God was not sent down to us to have His name used in ridiculous ways but as our Savior Who was born and Who died for us. Who watches over us all the days of our lives and Who judges the living and the dead. If this is something that you have forgotten, then I pray for you to remember! I tell people who forgot or never knew themselves that there was one person here on earth who could and did cure the sick and the "demons" which were the epileptics. The deaf, the blind and all else, but the answer I get most sadly is “who?”. “His name was Jesus, have you ever heard of Him before?”.  Every day of my life, when I perform an action like getting up and walking to get a bottle of water or cup of coffee, I hate, but hear almost always, “Jesus Christ, what are you doing?”. And my reaction is always as I stop short, “First of all, I am not Jesus Christ, so stop and secondly, I only wish that I was so that I could stop all of the problems of the world, understand?”.    

This is something you can learn from and to teach others about what is going on in your head all day compared to others. Everybody knows what a Rubik’s Cube is, a 3-D combination puzzle invented in 1974 by a Hungarian sculptor and professor of architecture Erno Rubik, in which you have to get all six sides of different colors of the square together to an even and clean form, which some people say is an impossible game, but it is not so. There are literally 43 252 003 274 189 856 004 ways of solving the Rubik's Cube, so good luck. Now when you have figured that 3D combination out, compare that to the brain cells in a normal functioning brain. Take the Cube, scramble all the sides of the cube around in your hand to start the game over again and you now have the semi-functioning cells of an epileptic brain smacking into each other causing major problems that you need to figure out ways to control.

A Rubik’s Cube is a good puzzle for epileptics to keep their mind busy, put in control and away from things that trigger seizures from occurring. Once you figure that out you may be able to do things that you hadn’t thought before were possible keeping your mind straight. This is not something that you will hear from a neurologist because we need them for all of their studies and research.

And no neurologist will have any problem with you telling them what you do all day, what keeps you interested and busy. A hobby in life is one of the most important things to have. These are things they want you to do, how they want you to be and that you should be enjoying for a normal lifestyle. These stories are the stories that make them see that what they are doing is working for you too. If you can't share your life stories with them, either good or bad, how can a doctor help with anything that you may need them for!

And for an epileptic, that is alot!      

Prisoners of Epilepsy & Depression

As the television shows Pope Francis in New York for the first time ever at St. Patrick’s Cathedral and then the 9/11 Memorial and museum Thursday and Friday, his Holiness said his prayer and gave his service in Spanish, something I would have liked to attend. Pope Francis is 78 year old man, full of smiles, and very much liked.

Source - Beacon Energy News

Michelle and I wish to also grow old and be together if that’s even possible for an epileptic as her grandparents did and mine as well. Even she has said to me that sometimes enough is enough and I understand where she’s coming from. There is no one I’ll ever meet as strong and trustworthy, I’ll never love anyone the way I love her, but even she sometimes feels nervous driving around with me because I sometimes have a seizure in our car and she has taken a lashing by me which I am not proud of. It has happened while driving recently by me swinging my arms around smacking her in the face with my left hand on her right side with my steel watch and all I can say is “what’s the matter honey” because an epileptic does not remember what he or she has done, the world around them ceases to exist until it’s over. Michelle does not blame me for my actions during a seizure because they are “not my fault” she says, and she’s right, but still they happen.

On the 29th of September, Tuesday night on the way home from work she told me that I had almost broke her middle finger on her right hand because she was trying to keep my feet off of the dashboard so I guess something happened. On the next Tuesday, the 5th of October while in the bathroom, an episode happened. I wear a medical bracelet on my right wrist which has the information of my medications on it from my beautiful Aunt Lisa that I’ve worn for 15 years and still today. That day I fell back, almost broke the toilet, my head on the right smacked the bar on the wall which serves no purpose, but Michelle secured it for me with child safety padding, keeping my head safe - this time. The wall on the other hand has a small chipped tile piece from my right arm swinging up. I am fine, the tile was more hurt than me.       

But there is something an epileptic can see all day long whenever and wherever it may happen and this is the easiest way to explain it for both the young and older readers. There is a vision we can see and control to fight our own battle and stop the seizure from attacking, but not all of them - I wish. This I call a glitch. This glitch can be seen all day and it looks and feels like your brain is crashing and rebooting itself like a broken, run down computer or an old television screen cracked with colored lines in square shapes and sizes or a cracked digital watch or cellphone. If you can imagine my explanation of this Memory Function you may be able to stop some of these seizures by holding them off, waiting for it to end and then get back to a more normal life style.

There is a scream that an epileptic can understand that can’t be controlled because this scream is an awkward shape of your face and causes you the loss of your function to speak and to breathe through your mouth by not being able to open it – it locks shut. This is not a common event, not as common as falls or the glitch that occurs all day which is a good thing because it is rather loud and who doesn’t want the power to speak or breathe. Michelle knows because she can see my face or that I’m am not talking anymore and I am trying to fight it off. I usually win if it’s possible and it’s what Michelle says as well. I just put a finger up in the air as to say, hold on, give me a second and then I’m back. My wife knows the best way to deal with my issues, my parents, not as much.  

I myself go through 75 to 100 seizures a day, no exaggeration unfortunately and I have had this many problems ever since I can remember, but while I was in school and work I was able to Control most of them. This is no trick, just a way of controlling what happens besides the falls - possibly I will find a way in the future.

Since most of my seizures come from a light source glaring off of a book, a computer, street lights or the sun, I can avoid these problems mostly since they occur on my right side high on the upper corner. I throw my right hand up smacking them away, this can be done by telling your dysfunctional brain “This is my body, my life your trying to destroy, go away!”

My tip to Epileptics and a way to survive - Always know where you are, that you are okay and in a safe area or if not lean against a wall so that you know nobody else can get hurt by you and keep yourself in control of your own functions. It’s not a cure, nothing is sadly, but if you are one like me with all of these problems give it a shot, it may work for you. Michelle usually asks me what’s going on, she can see when I’m having an episode and when it’s over I tell her, “sorry, I was trying to keep it under control”.  It’s better than beating yourself down with Depression -  I know.

Since 2011 right after my marriage I have had my freedom taken from me, staying in this room, on this chair, deprived of the outside world. This has become my only way to reach out to others. I never see friends, sometimes family visits but not for me, just on occasion. I am seated on or chair with arms with a world that I find frightened of me. I find myself to be a Prisoner of Epilepsy. I look out the window behind me like a prisoner, but at least if I was a prisoner I would have more freedom along with a reason for being there. I have no rhyme or reason, just Epilepsy. Yesterday I texted Michelle that I’m 35yrs old and have been living on a couch for four years and the more I think about it, these years of my life taken from me more angry and disturbed I get and feel and I don’t know if I could live another year like this. So on that matter, if that’s not Depression enough for you then what is?  My dog has more freedom, I cannot go on living a life like this, I will not end up in a wheelchair, if I ever saw that wheelchair I would smash it against the wall, it’s not necessary and hopefully won’t be, at least not anytime soon.

I am a Fighter, always have been and never would I do anything stupid to myself on my own account. My family knows that, my old friends do too, but none of them as far as I know or was told are living the way I am. I have a cousin that was born epileptic 3 years ago, in a family from Seaford and, two boys, - twins, from Connecticut who have seizures and Autism as well at 5 years old - All Fighters like myself. I learned from my grandparents that I had epileptic family members in Italy years ago and probably to this day. Epilepsy and Autism are not genetic as some may think them to be.

I intend to help my cousins, as well as many other families suffering - Not to end up as Prisoners of Epilepsy and suffering from Depression!