Epileptic Marriages

A major concern in many Epileptic lives after getting married is how to stay married!

First before we begin I want you to read a powerful entry in the New Testament:

A Reading from the Letter to the Hebrews chapter 13: 1-8

Let brotherly love continue. Do not neglect hospitality, for through it some have unknowingly entertained angels. Be mindful of prisoners as if sharing their imprisonment, and of the ill-treated as of yourselves, for you also are in the body. Let marriage be honored among all and the marriage bed be kept undefiled, for God will judge the immoral and adulterers. Let your life be free from love of money but be content with what you have, for he has said, I will never forsake you or abandon you.

Thus we may say with confidence:

The Lord is my helper,

And I will not be afraid.

What can anyone do to me?

Remember the leaders who spoke the word of God to you. Consider the outcome of their way of life and imitate their faith. Jesus Christ is the same yesterday, today, and forever. – The word of the Lord.

    In many lives, marriage’s get ruined because a man or a woman cannot deal with the other one’s problems. This is a major issue, especially for the person who’s watching you and all of your issues such as falling, bleeding, and seizures of all types. It is quite scary for your other half. Not working doesn’t help the situation either but, for our sake, sometimes it’s a must. Some of us after a marriage, by accident due to epilepsy become paralyzed, stuck in a wheelchair for the rest of their lives or dead! Death by SUDEP (sudden unexpected death do to epilepsy) can happen to any epileptic which is not something I wish to share about, basically because any widow/er whose husband or wife passes away from a SUDEP incident has to simply mourn the loss of their loved one.

    The husband or wife that is not epileptic needs to, and should care and realize that the other may be in terrible condition, shape or feelings. Pain mostly that can not be seen by the other person, or that they will not be able to see what goes on inside the other one’s head, all day long!

    I know how difficult it is for anyone to watch the other one seizing from Petit Mals to Grand Mals and of all other sorts as well. My wife has a heart of gold because she fights through all of my problems more than any other person I have ever knew would. I did not marry her for all of that because, at the time of my marriage and before I was not having the problems I have today. These problems started happening right after our marriage and honeymoon and yet, for almost 5yrs now and going still she had to become a full time worker during the day and my wife/nurse at night. It is something very special about a person who has to put up with all of my rather hard to deal with issues sometimes, and yet does it very well by keeping her eyes on me always and everywhere. Not something that I am happy about but, do I have any other choice?

    Your spouse needs to be in better shape than you are hopefully to become your chef and house maid. I myself did not mind 7yrs ago with the cooking and help with the cleaning; vacuuming mostly. Being Italian as well I had to ask Michelle, my girlfriend at the time, if she was a good cook, not an okay cook but, a fabulous one it turned out to be. Barbecuing in the Spring, Summer and Fall was much more my specialty as all husbands usually are and that was taken away from me too.

    Therefore, my life consists of books mostly, reading all sorts from wherever and whenever they were published and music, yet not as often. Weekends only mostly. 

    Forgetting about my wife and I and back to a case such as yours, finding someone to drive you from here to there is another major concern. For the longest time in my life, since 2000 I had given up my Driver’s License, smartly after only 2yrs of driving. I did not feel as well as I had before, although stupidly others would rather not give up their Driver’s License instead of acquiring their Identification Card as I did and cause accidents and death to others and themselves. 

     Taking vacations with your spouse as you’ve done in your past with your families or not, is still necessary for the other to get out into world from being trapped most of the days, months and years of their lives! A honeymoon is a vacation but, a vacation the two of you find necessary after their wedding which is not true. The truth is for the two of you to find time to share with each others constant company, to know that you can deal with your spouse’s problems and issues. To be with that person on a 24/7 basis to know that you are and will give your life up for that person when and if necessary. That you will throw yourself in front of a bus or bullet for that person. That is what Love is!  

    For sure, a spouse may annoy the hell out of you, but that is a very common thing to happen. Is that any reason to leave the other person behind? No

    My wife and I worry about each other every second of everyday of our lives. She works in Manhattan. I am home which makes me most fearful knowing that I cannot run to her as I was able to do in our earlier years. For 13 hours or more a day I am not with her and it kills me to think about it over and over again. I am able to see my wife after work and before our bedtime for only about 4hrs until the next day begins all over again. Sure we take vacations, but not many. Over our seven plus years together we have only been on a few long vacations.  

    Everybody knows that a marriage is not cheap, not to say that you shouldn’t have one though because of your issues, that is a terrible thing to do or how to live. But, if you are lucky enough to find the right person to help you with your problems or difficult times, then I can only say Amen to that. If the person that you are with is afraid of you and your problems which I have seen personally, then that is not the right person for you, whatever it is you may have!   

WHEN GRAND MAL SEIZURES ATTACK

               On midnight of Monday, December 14th into Tuesday, the 15th was a night like no other when my Grand Mal seizures had attacked me without one break at all; only increasing in power. The Power to Kill!

                That night, all night long actually I had Grand Mal seizures in my sleep. An ongoing nightmare from hell and at 3am that night I jumped out of bed and Michelle knew right away that something was wrong as this was something that I never, ever do. She jumped out of bed as I walked to the bathroom like a zombie, and back in fine. At 7am though when Michelle woke me up as usual to get ready,  I could tell that something was not right! I tried to fight the seizures off as usual, but this day was not a usual one!

                As I walked over to the bathroom towards the sink getting ready just the same as every morning, I fell back onto the leather chair with arms for myself to keep me safe from incidents like this. I was out falling back onto the chair, Michelle helped me off as I was sliding already and laid me down on my side. Laying there for 5 minutes unable to rise Michelle quickly called my parents over. I was spitting out blood from my mouth from my bitten tongue, but not much, not yet anyway! My parents arrived, helped me up and I told them that I did not want to go back into the bedroom because I’m afraid that this time I may not wake up. I sat on the couch and thought that I was fine, for the moment. Michelle called work and said she would be working from home because she knew that this was going to be an awkward day, and was so right!

        A few minutes later another attack occurred, just the same and they called for me an ambulance as I lay there on the floor. The ambulance arrived and got me down and into the truck without any further problems, yet! Michelle and I had to persuade them into not taking me to the local hospital because we had experienced this in 2012 that they had no experience whatsoever with Epilepsy there and finally to NYU we went. Nothing happened to me on the way there thankfully because I can’t even imagine what would or could have happened. Into the ER we went and I waited there on a stretcher in the hall way and then into an oxygen sealed room in the ER when Michelle’s sister Nicole and my new sister in-law, Despina arrived. I told Michelle to go get them both from the waiting room and bring them in. I was told the next day that they had stayed the entire time that I was in misery and I really appreciated it more than they will ever know. I love them both so much!

        They escorted the four of us up to the 12th floor which is the last that I remember of them, or anybody. Including myself. I was escorted into a room, rolled off of the ER bed and onto the hospital room bed and this is when I needed to be filled in of everything that happened to me for the next 5 hours. What happened next - let’s just say I would have been shot dead or burned at the stake 100 years ago for sure. You know the saying ‘There’s a Devil living inside of you’. Well that day, the Devil came out! And by far it was THE MOST HORRIBLE DAY IN MY LIFE! A day in which I wish and pray will Never Ever Happen Again!

        For 5 hours or so the doctors, nurses and even the hospitals bodyguards were called in to try to keep me and my Grand Mal seizures under control. Well, at least they tried because they lost. My Grand Mals kept my body, not me, jumping up and smashing myself back down again onto the bed. No one was able to hold me down long enough to stick a needle in my arm, no one. Not my brother Michael or my father even who tried to give in a shot. I remember them trying to tell me to stop, slow down, stay down and I looked at the bed, side to side and the end and noticed every nurse and doctor, my own neurologist and the foot of my bed with the spookiest look I had ever seen. That time and that time only had my retarded brain not functioning well given me any memory, not that I would have wanted to remember, but my body was feeling the pain though. During this time as well my tongue had been chewed on side to side but luckily was still attached and not bitten off which can certainly happen.       

        After all of the fighting, punching and kicking with everyone trying to help, I woke up the next morning and I was confused of course. I felt like I had been shot in the head 25,000 times with bullets from every direction. I looked down on my left hand which had a needle in it and an IV. I had one on my left arm I remember, but I yanked the damn thing out, I was told. No surprise there, have done it before but not like this. I was looking around at my body, noticed some bruises on my arms and legs from trying to be held down. Bruised, but not battered. And of course 24 wires connected to my head, an EEG which I felt nothing of them doing it. An hour later Michelle arrived and hugged me tightly, happy to see that I was alive and well. She had thought that I had been lost forever. I was in such pain I remember asking her “How did they get it to stop”, Couldn’t they of just knocked me out over the head or something”. Not joking either with a straight face.

        She goes “How, they couldn’t grab you, you were too fast and strong for them” ‘Your joking with me right, you must be kidding me’ “No joke, it took a long, long time to get you to stop and a lot of medication pumped into you”.

“Well that makes sense if you say so since I’m a bit bruised up here and there and my tongue hurts too, I’m guessing I’ll definitely be here the rest of the week” and I was until that Saturday. ‘Yeah well you chewed on it a bit and they called in for help, but you kept pushing them away and they kept saying that you're too strong for them’.

        That made me giggle a bit and I said “Well lets pray that that never happens again”. Michelle stayed with me the rest of that day and laid in bed with me too, filling me in with more info and talking to the doctors. Told me that Michael ran out of the room angry, devastated as everyone was, and punched the wall saying “Why is this happening”. My family had never seen something like this before. My parents came to visit me that Wednesday too and my father saw me there on the bed, okay and all and laughing saying “They had a hard time holding you down, you kept breaking away from their grip” ‘Okay dad, I never want to be reminded of that day ever again, no matter how crazy it was, let’s just be happy that I’m still here okay’. I had other visits throughout the week and phone calls on a hospital phone I asked for from family and friends. For two weeks I had stayed off of my computer and cell phone still till today.

        I was so frightened that I almost cut my cell phone out forever because I know more than most the problems they cause. Computers as well, but I kept that more under control with being timed on how long I stay on one. Wednesday I was looking at my tongue with Michelle’s phone and we noticed that amazingly it was healing and quickly too. I had no medication for my tongue, if there even is anything for a tongue unless you bit it in half.

       Michelle had brought me a book because she knows me well, but this sweet lady, not a doctor or nurse even, but was more like a nun who worked for the hospital, yet not dressed like one, had said a prayer for me, with me, for my aunt that passed away the day before. I was sad that I missed the wake and funeral from being trapped on a bed in a hospital. The next day, the same woman visited me with a Bible in her arm which I was eyeing, but another patient had asked for it and yet, she offered it to me, but I told her that I couldn’t possibly take it since another patient had asked for it. Even so, she still noticed me eyeing it and said to me that the hospital had plenty of them, so I thanked her gracefully. It seemed though after reading it - the nurses, male and female, started looking at me and asking me as well what my favorite part was of the Gospels - Matthew I told them; my favorite disciple of Christ. It seemed to me that they had been shocked that a patient, a young one, was reading a Bible. Makes everyone smile more. I truly believe that Jesus Christ is with us always I told them and that I am a better man for it.   

        Some things though do happen for a reason, everything in life has a purpose I believe. And Tuesday was no different. Already I am on Onfi, Fycompa and Aptiom. My neurologist put me on Dilantin Wednesday and an Italian neurologist who I had just met for the first time did a study in Rome on a few Epileptics and found that Prozac, although primarily used for depression, which I am not, works well for seizures. Since I have already tried every medication already how could it hurt. So I said yes along with the four others throughout the day, morning to night. Prozac is taken just once in the morning. All three of these meds combined; and I think that the Prozac is the key medication in the large dose of meds every day that I have been on for years. Since starting the Dilantin again as I did when I was young along with the Prozac my falling has slowed. This is no cure because there isn’t one at all, but finding the right doses of meds can keep an Epileptic, like myself Under Control! PROZAC who knew right!

        I always believed that something has to work, something was missing or not found yet to keep my brain waves calm. But this neurologist had an idea, an awesome idea that just possibly a pill for depression which has been around for years could be the key drug for Epilepsy, combined with others.