Epilepsy Foundation

Sup Family??? My wife and I have been married for a year, but we have been together for over four years. She is the best thing that has ever happened to me. God really knew what He was doing when creating my wife. From the beginning of our relationship, I told her about my epilepsy and she has never looked down at me because of it. She probably knows more about my meds than I do, is very observant to my behaviors and moods (As a result of my meds), knows when a seizure is about to occur, reminds of my appointments, etc., etc. She has unfortunately seen me when my issues have hit hardest.

However...lately I have been having more auras, or as I like to call them, "seizure symptoms". My neuro-psychiatrist has switched and adjusted my meds several times, but still I have my auras. She is very scared for me. She has told me that she fears that I may leave this Earth prematurely because of my seizures (I am 36). She does her best to be strong, but even the smallest of things scare her. This morning I was getting some clothes from our laundry room, and the trash can we have in there fell over or something like that. She immediately and alertly called out my name as if something bad occurred. I told her, "Baby...come here". She came over to me, and I asked her what was wrong...and also telling her that it was just the trash can. I could see it in her face why she screamed my name out like she did. I asked her if she thought something happened to me and she said "YES". Then I followed up by asking her "Because of my epilepsy", and she sheepishly said "YES". I just took her in my arms and hugged her.

I do my best not to "bitch and moan" about my condition. To "push through" in spite of the issues that hinder me from this and that. But I'm human, and sometimes I am a bit "self-indulgent" with regards to my feelings. So self-indulgent, that I sometimes forget that my wife has to deal with this too...almost as if she is epileptic.

I want to ask you all...how does your condition affect your family members? Not affecting them in ways where they are mean or abusive to you. But how does your condition affect those family members who are supportive? How do you all handle the issue with your families? I appreciate you all's help, and I am here to help you all if you need me.

MBJ

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Comment by Marc B. Johnson on August 10, 2010 at 12:22pm
Hey Jeanette. Before I comment on the meat of your comment, I will answer your questions. I was diagnosed when I was 15 years old (I am now 36). I was watching television with my godmother and godsister (She was only a month and a half at the time), and next thing you know...BOOM, I am in a stretcher. Got rushed to the hospital, where it was discovered to be a seizure. Then I think a few days later, I was diagnosed with epilepsy...specifically grand-mals...or a different variation of it.

As for being and living independently...well, I think it all depends on the person. If she is passionate about living on her own, I believe she should be afforded the opportunity. From a practical point of view, you try to minimize risks. So she should get a first floor apartment...she should cook large batches of food, so that way during the week, all she would need to do is reheat the food instead of actually cooking it. Aside from the practical stuff, she needs to realize more than anything that epilepsy is not to define her life. That she can do anything that anybody else can, but she just has to do it in a different way. Despite what she may go through, she needs to develop a healthy attitude/health self-esteem. The more positive she is, the less stress on her, which means less seizure activity. I want to make clear, that as I am telling you this, I do struggle myself to keep a positive attitude. However, what's the alternative?

I wouldn't necessarily be defensive when your friends make statements such as the one you provided. Granted, I don't know "how" the statement was made, and in what context. You're right...it is hard for them to grasp the gravity of what your daughter deals with, and what you deal with as a mother. But I believe their heart was in the right place. I don't know the degree of her seizure activity, but if it is, for the most part, controlled...I think she should have the opportunity to live on her own. I know you worry about her, but if you are a religious person, put your faith in God, and He will certainly watch over her. Just advise her to be strong, reassure her that epilepsy doesn't define her, and that she can do ANYTHING in her life...just in a different way.

As far as getting a service dog...I think that may be helpful. I know that they can detect seizures before they happen, so I think that would be a good thing. And it would offer companionship if she is by herself.

From what you're saying...you seem to be a caring Mom, and that is very important. Your daughter seems to be pushing through and is goal-oriented (Evidently by getting her G.E.D.). I think she has a bright future, inspite of epilepsy. I will keep you and her in prayer.
Comment by Jeanette Dolphin on August 9, 2010 at 6:09pm
Im the mother of Ashante, who has been diagnosed with petit mal since she was 5 and has progressed to tonic-clonic seizures at 16. She is 19 now and I am quite worried for her. She has lived with me up until last February. I currently live in France (for the last 3 years), however,she decided to move back to the United States to finish highschool (G.E.D.) Her epilepsy has hindered her learning a bit (takes her longer to understand things) so learning a new language was a huge barrier that she could not overcome. She is now living with her paternal grandmother who is helping her get that G.E.D.

Days like today really make me think, "How will she get on when she is on her own?" Today, I was talking to her on the phone (I am in France, she in Miami), and as I am talking, I hear her have a seizure. I felt so helpless, powerless, and inside, my heart broke. Her grandmother was in the garden and did not realize she had a seizure. I hung up and called back about a minute later, and thank goodness she answered her cell. She was still dazed, coming out of her seizure...I still can't believe she answered the phone. I stayed with her until she was completely out of it. She was so scared, she didn't know if she was alone She said she felt alone. She started crying and almost hyperventilating, but I managed to calm her down. Normally, if she was with me, when she came out of it, I would be hugging her, someone would be there. This time no one was. While I was on one line, I used my other line to call the house phone so that her grandmother would know she had a seizure.

For the first time, I wondered, "What will she do when she is completely alone?" What if she was alone and was cooking and she fell forward on to the stove? What if she had a seizure going down the stairs? What if, what if, what if. As a parent you never stop wondering, worrying, hoping. I tend to get defensive when friends tell me, "She has to figure out how she is going to live her life with this, you can't always be there to decide for her". While this is true, they can't imagine what it is like to have a loved one go through such an involuntary and sometimes hurtful event. She may be 19, but maturity wise, I feel she is 16. As I know I cannot physically be there for her now, I will be there to guide her into the right direction. It's been a difficult road and when there is a road block, I just find an alternate route...I can't stop trying to make it better for her, I will always try to find a way to make her life easier.

How early on were you diagnosed? What advise can I give my daughter in terms of becoming independent? Im thinking of getting a service dog for her, what do you think?
Comment by Scott Edington on August 9, 2010 at 5:07pm
Capitol Hill, that's great and an inspiration...Thanks!
Comment by Marc B. Johnson on August 9, 2010 at 2:46pm
Scott...honestly, I think you have nothing to worry about. You're good, Dude. I do understand about the struggles at work. I work in one of the most hostile work environments on Earth...Capitol Hill. I work on a congressional committee, in which memory and multi-tasking are very important. My inability to process certain information, or remembering information (I have short-term memory issues), makes me look un-intelligent and incompetent. I have as much skill and intelligence as any of the people I work with, but I don't feel that anybody will take me as seriously. But...I can't worry about them. All I can do is find my niche', push forward and "to hell" with all of the haters. I hope you're working now, and getting things back in order. Again, I will continue to pray for you, because I know what you're dealing with, and I can feel the pain with what you write.
Comment by Scott Edington on August 9, 2010 at 1:57pm
You're right Marc I have been sounding more depressed than normal. I got worse after I lost my job after 17 years, I kept blaming my disability and I need to snap out of it. At work It was a real struggle with my memory problems, poor focus and the emotional roller coaster hard not to wear on my sleeve. No matter what, people that don't understand the disability will treat you different but I once was them too.
Losing my job was a big blow to my self-esteem and boosted my "woe is me," but I'll try to persevere and snap out of it.

It's funny how you brought up the mind over matter and trying to be mentally strong. It seems like just when I think I'm mentally strong and all seems well I'll get one of those crazy auras and think damn this is crazy and I'm all messed up. LOL...Thanks Marc!
Comment by Marc B. Johnson on August 9, 2010 at 12:23pm
Wow Scott. First and foremost...what you say blesses me. Whenever anybody responds to posts that I may put up, it's a blessing. Because as I have stated in other blogs, us who have "E" are kind of large community who deals and suffers with something that nobody else can truly understand. What we say, whether being something encouraging or a complaint...it's beneficial. So thank you for responding.

Wow...I am sorry that you are dealing with what you are dealing with. I can't say that my situation is not as intense as your's, but I certainly understand it. The affects of epileptic medication and the thought(s) that come with having epilepsy, can really bring a person's self-esteem down. I have been there. My first marriage (I used to be married from 2003-2006) partly suffered from the depression as a result of my epilepsy. It affected my relationship with my then-wife, and caused me to think about and do things that I should have never done within the confines of a marriage.

My current wife...she isn't depressed because of my situation (Which is what I think you said), but she definitely worries, and that concerns me. I don't want her thoughts to revolve around the fact that something could happen to me at anytime. I think sometimes she feels that way, because I am not presenting a strong enough front/image. But epilepsy is strange in that no matter how mentally tough you are, the physical effects will show...mind over matter doesn't necessarily apply in epilepsy.

But let me tell you this...your wife decided to marry you...PERIOD!!! She knew what was ahead of her when getting involved with an epileptic. That's when those wedding vows become something more than words...but a way of life. I can understand your guilt, but don't tell her to leave. That's more selfish than anything. It's just like saying you want to kill yourself. You may want to end the pain, but imagine the pain you would cause your family. Same thing...your wife wants to be with you, regardless of your medical condition, and that's how it should be. In some ways, my epilepsy has brought my wife and I closer together. We do our best to enjoy our time with each other, and we are each other's best friend. I know that she will do any and everything she can to help me through my challenges with epilepsy. I imagine your wife is the same way.

And you even admit that you have found a blessing in having "E". You are sympathetic and empathetic to those who have it, and that's good, in a world where people generally look at us as nuisances and not people. As depressed as I was in the past, epilepsy was a blessing to me, because I would have been drinking myself into oblivian. But being that I take meds, I don't drink.

I will lastly say this...have your wife come with you to your Dr's appointments (If she hasn't already). Let her get a good sense of what this disorder is, and not what it can do (If that makes sense). The more she understands how epilepsy works, then the more reassured she may be. Don't hate yourself...no need. I'm praying for you, Dude.

God Bless you and YOUR wife.

MBJ

PS-You a big dude. You need to write the "Epileptic Workout". LOL!!!
Comment by Scott Edington on August 9, 2010 at 11:42am
Great post Marc,

I happen to be fortunate too and put my wife through a lot. i.e. depression, auras, fear of a gran-mal. My desire for intimacy is gone, and just the constant attention brought on because of the disability.

There have been times where I'd tell her to just go on with out me, that I drag her down and I'm making her depressed. I know my depression brings her down and I feel guilty because of it. I used to feel more confident with pride and now I feel less and more emotional.

It's hard not to complain about epilepsy the way it affects our quality of life. I think if there is a positive outcome due to epilepsy it is the way that it humbled me, maybe too much though where I self loath, but now I look have a great respect for others with disabilities or mental well being. I used to look at others with epilepsy and think that must suck, but I really had no understanding or genuine regard for them. Now I'd rush to someones aid having a seizure in public or where ever to prevent them from hitting their head or keep them on their side and our wives would do the same thing because they too are humbled and understand.

Great post Marc...God Bless you & your wonderful wife!

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