Well…..here we are at the end of Epilepsy Awareness Month. You have heard from me on being the wife of an Epileptic and what is the like for a spouse. Now let me intro you to my husband who has Epilepsy. He has struggled with this since the age of 12…he has been my husband for 30 years and has raised two sons, he worked at one point in the medical field, he drove a car, and he was very involved in many areas of life…and now find out where life has left him. Grab a cup of coffee and take the time to read his story ….right from someone who struggles with a chronic illness daily and sometimes hourly but has found a life within this life and is #beating the odds.
I really appreciate the opportunity to tell my story of Epilepsy in my life and what is like to live this life daily and hourly! Find out firsthand the life that some of us live and how I have adapted to a new norm.
For me it started many years ago… I guess I was about 10 years old. I had been asked to stay after school because of a problem. I actually had been in trouble at school for something … so when it was time to leave I jumped on my bike to ride home but I did it in anger.
When I got to the traffic light it was green for me…..but the car on the other side had a red light, and did not stop. Needless to say the car hit me and I went flying into the windshield with my head getting hit. I can only recall half way across the road and then waking up in the hospital.
Well I was pretty beat up with a dislocated my clavicle, got a big bump on my head and chipped my front tooth. They decided to keep me in the hospital for a couple of days under observation. At that time they could only diagnose me with what they thought was broken …the seizures were not noted yet. It wasn’t until a few years later that I had my first observed seizure…and that is where my story begins….
I sensed things from time to time….but it was not something that I could really explain. Not knowing that I had a problem…..I just dealt with it the best I could. It was a hard thing…not being able to explain to anybody what I was feeling or going through.
Not knowing what a seizure was ….I did not know what was wrong with me. It wasn’t until years later at college that I had a large enough seizure and finally got the help that I needed. After that….my life completely changed. One major thing that changed was that…. I learned quickly how people will treat you differently when they do not understand what is going on! People that treated me normal…such as family and friends….now treated me like the hardly even knew me.
People will avoid you for fear that something might happen while you are with them, they are afraid of what to do. People will just not talk to you since they don’t know what to say. People will talk about you only feet away as if you can’t hear them…..and yes I can hear you. They will ask my wife a question to avoid actually talking to me. I have said to my wife that it’s kind of ironic how some people seem to be able to understand if you have a sugar problem or something else wrong…and they seem to be able to cope with that better than people with a seizure problem. Don’t be afraid of us…..we are just like you with added personality in our life.
People are educated and seem to know the steps on how to care for a person that has a sugar attack or similar …..But when somebody has a seizure… people panic!!!!
I will say that it affects every area of your life, but I will not let it have power over me!!!
A quotation that has always motivated me is and that I live by…
“Look for the good times along the way .You can’t put off enjoying life, waiting for the day when epilepsy is no longer an issue.”
– Diane H. (Mother of patient)
Epilepsy has affected my marriage in many different areas. It has affected how I am as a father to my two sons and now daughter-in law. My sense of self-worth is something that I struggle with all the time and trying to fit in the mold of husband and father…..my self-worth takes a back seat.
It is hard to be the head of my home, and someone who my wife can depend on ….because many times my thoughts are not clear. I have days where I know exactly what is going on and then many days where I have to just depend on my wife and children to help direct me. As a man that is something that is unspeakably hard for me.
After years of struggling and many situations with my seizures…..It has gotten to the point where I finally had to go on full-time disability. Let me tell you from again a husband/fathers point of view….. it was a definite low point in my life and it took me a long time to get over it!!
I have found that having seizures has given me a unique perspective on life. I can relate to many people who struggle with chronic illness. The most useful perspective is with my youngest son who has Autism. Both he and I struggle neurologically with many things, I can so relate to him when no one else can. This has been a huge blessing for him and also for my wife. It gives her a sense of security…knowing that someone can honestly understand some of what our son goes through. There are times when both he and I have reacted to things because of our neurological problems and we can relate to each other. For instance when the weather is stormy… I know it’s going to be a rough day for me, and I know that it’s going to be a tough day for him as well.
One true blessing in the last three years of my life has been the moving to a new church! I have found a Pastor who accepts me …just as I am. He is aware that I have epilepsy…yet he is willing to work with me and in doing so this has brought back my confidence and self-worth that I had lost. He always keeps an eye on me and he might come over and say “are you okay?” but I know he has my best interest at hand. By him leading this way….it has shown the church that I am ok….it has allowed the church family to feel relaxed around me and my family.
It is still difficult though in many other ways. There are many times I have to use an electric scooter rather than walk and worry that I might fall at stores or other places.
I am blessed have a wonderful wife and family, as well as a strong support group in my church… and some good friends who I can depend on. I would recommend to anybody that has any kind of health problems whether it is epilepsy or any other chronic illness to make sure that you have a good support group in your life…it WILL make a difference.
How can you help me and others with chronic illnesses….
- Don’t stare
- Don’t avoid me/us….come talk to me/us.
- Don’t talk as if we are not in the room.
- Don’t treat us like we are weird.
- Don’t act like if you touched us we will seize on you or that you will catch what we have.
- Treat us normal!!!!
- Treat us with respect!!!
- Remember we were created to be a unique person and to carry out the work that God intended. Don’t Judge us for that.
- Remember that people with illnesses are not being punished for past sins!
- Most of all remember we are a human being with families, lives and feelings. Treat us the same way you would like to be treated.
Feel free to comment below if I can help you in any way. My wife and I would love your feedback and to hear from you.
Thank you for letting me share my story and if you have not read her Blog yet on being the “Wife of an Epileptic”.…check that article out too.
Graeme M Wilson I – Husband of Resume of a Mother
2 thoughts on “#Beating the Odds…..My Story of Epilepsy.”
Thanks for sharing your story! As a nurse and someone diagnosed with epilepsy and other multiple chronic illnesses, I always say one thing epilepsy has made is a better nurse. It has made me relate to my patients in so many ways and made me a more compassionate and understanding person. Your son is very lucky to have a father like you. It’s unfortunate that epilepsy of all things had to make you two relate (I’m sure there are other things), but sometimes what seems like a curse can be a blessing in disguise in the right light. Good luck, and I wish you all the best!
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Thank you for touching base after reading my story. My thoughts have not been very clear this week so I am sorry for a delay in writing you back. It is so nice to have someone who understands me and also what my wife goes through too. I wish you much success in your life, career and also my wife told me you will be getting married soon. Thank you, Graeme,
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