A Post About Living With Seizures

I wrote this on Patients Like Me to the Epilepsy forum.  I thought that it may help others with seizures, so I’m posting it here too.

I remember when my seizures were so bad that I felt like a burden to my husband (then fiance) and my family. I remember being suicidal because I felt like I didn’t control anything in my life. Fortunately for me, I took those concerns with me to therapy, and it helped me realize some very, very important things.  I want to share those truths with you now.

1.) You have innate worth as a person. Each of us is a completely unique being within this universe. There has never been a “you” before and there will never be a “you” again. This means you are precious – of great (actually unfathomable) value; not to be wasted or treated carelessly. Having seizures does not decrease your worth as a person.  In fact, it means that you have a point of view that exists to increase overall empathy of others in this life.

2.) You are not a burden to bear. You are a blessing! If your family chooses to take care of you so that you don’t have to work or do certain chores, they are doing so out of love. The only place where the law says that you have to support someone is when you are married or you are someone’s child — and you cannot force someone to marry you or give birth to you. Those decisions are ones that are made by someone other than you – and you are never responsible for the acts of others. You can only control yourself.

Choosing to view yourself as a burden because you cannot be entirely self-sufficient or do the things you once could do, does nothing but create resentment for yourself and frustration for the people who are making the active choice (out of love) to care for you.  Resenting yourself is so self-destructive! If you want to resent something, put the onus where it belongs: on the seizures themselves. I resent the hell out of my epilepsy. It fucks with me when I don’t want it to — but I do not resent myself for not having a job, because that would be an exhibit of poor compassion for myself.  I know that I am as deserving of compassion as any other person, and that the way I treat myself shows others how to treat me. It is important to treat yourself as well as you would a friend. Doing otherwise is making an active choice to feel poorly.

4.) Seizures are something that happen to you — they are not who you are! While we all struggle with the fearsome lack of control that seizures cause for us, we are always in control of our actions when we are not going through the moments of seizing.  It is of the utmost importance for your well-being that you do not allow the emotional turmoil of going through seizures stop you from doing the things you love to do, taking care of yourself on basic levels, or connecting emotionally with the people who care for you.

5.) Seizures do not ruin a marriage or a relationship — poor communication, lack of trust, fear, and resentment do. I see many folks on this forum doing something I did for a short amount of time, and it’s terribly destructive: Letting your physical condition define who you are to yourself and others, and thus using seizures to separate you from those you love. Phrases like, “You have no idea what it’s like to be me” and “I scare people” are empathy blockers. The truth is that people who witness you seizing will be frightened — but they are not frightened of you, but of what is happening to you because it makes them consider their own fragility.

Last, but not least:

6.) You deserve to feel happiness. Everyone does. And the only way that you’re going to be happy, when you have a seizure disorder, is to accept that the disorder is going to do whatever it is going to do, and instead concern yourself with what you can do when you are not seizing. Do what you can do. Memorize the serenity prayer if you have to. I know it helped me.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

–Reinhold Niebuhr

Even if you are athiest, the prayer makes some damn good points. Life, with or without seizures, is something we have to accept as it is, not as we would have it.  So learn to make lemonade out of your lemons as best you can. Try to see the bright side in things.

Life with seizures is still life, afterall.

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