November is “Epilepsy Awareness” month….but I often wonder is anyone really aware or how much do people really know? We are a family who has been affected by Epilepsy. We know what it is like to live with this daily; we know what it is like to live a different life than most. We know what it is like to consistently tweak our schedule, routine, meds, family events and almost everything else. We know what it is like to just think that “we got it”, to find out we don’t…and what we thought caused the seizures changed again.
I wanted to write something about some of our challenges when trying to live a “normal” life and also in spite of this thing called Epilepsy.
How has Epilepsy affected our family….let me list a few things that either you will relate to or hopefully will give you some insight to what “normal” is for us…
- Seizures daily
- Mood swings daily
- Anger issues
- Loss of full time work
- Loss of friends
- Way to much advice from everyone as to what we are doing wrong
- Loss of a drivers license
- Large medical bills
- Health insurance issues
- Always trying new meds
- Trying to balance being a parent with your kids when Epilepsy gets in the way
- Trying to balance being a spouse with your wife when Epilepsy gets in the way
1 in 26 Americans will develop epilepsy in their lifetime. An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
http://www.cureepilepsy.org/ or http://www.epilepsy.com/
Epilepsy is real and does affect many, many families. Each story is different and each person is unique!
I write to you today not to complain but to explain. We are a typical normal family with an added member call Epilepsy. We believe that this is part of what has been ordained to be the package that makes up our family. We call ourselves the #teamgwilson
….and we strive to live each day to the fullest, we try to beat the odds, aim for a
fun filled live, not hold onto what we do not have etc…
Our greatest strength comes from the Lord! We also find strength in our church family, family and friends and some support systems that we have put in place.
With most disabilities we as humans are normally frightened by it. It is different…we don’t know what to say, what to think, where to look etc… Just remember that these people are human, and have feelings. DO NOT treat them different or like they have a rare disease. DO NOT offer advice when you have no clue what is going on. DO NOT pamper them. DO NOT ignore them when they walk in a room, walk the other way and DO NOT feel sorry.
My husband is one of the strongest men if not the strongest man that I have ever met. He is a true example of what a life with Epilepsy can be when someone purposes in their heart to live a filled and purposeful life.
We will be writing a 3 part articles this month to share and encourage you all on this subject. To help paint a full picture the articles will include….what is like to be the wife of an epileptic, what is like to be the son and grow up with an epileptic dad and then what is like to be the EPILEPTIC person.
Feel free to let us know part of your story in the comment below.
Thanks for sharing our lives with us!
Lynn A. C. Wilson – Resume of a mother
6 thoughts on “Epilepsy Awareness and the Do’s and Don’ts…”
As a nurse who is diagnosed with epilepsy it’s definitely important to have a good support system in your life, it looks like you do. Keep on writing on spreading awareness about epilepsy. Check out my blog, I’ve written a few posts about epilepsy including: You Never Know Who’s Listening, Seizure First Aid, Epilepsy Awareness, I also think Preparing for Appointments is a good blog to read for anyone who has any diagnosis and I think perhaps you’d have valuable comments to add to the blog! Thanks!
Thank you so much for touching base. I it great to hear from someone who really understands as you do!!!! I am so happy to see that you have pursued a career in nursing…not only something for yourself but something that gives back:)
LikeLiked by 1 person
Yea, even before I was diagnosed I always loved helping people. After I was diagnosed I had some difficulty with cognitive issues, which made my journey to becoming a nurse harder, but I worked with doctors on finding the right medicine and while I’m not seizure free, I’m doing a job I”m love and still working on becoming seizure free. I see physician assistant who actually has epilepsy as well and I hope to one day become a nurse practitioner and work in a neurology department and show people that even if you have a diagnosis it doesn’t have to define you or limit you. Yea, sure it definitely makes things a lot harder, but it doesn’t have to prevent you from going after you dreams.
Thank you again for sharing….you are such an encouragement to me and I can’t wait to share this with my husband. We have a hard time finding positive people near where we are that get life going in spite of seizures. You are inspiration!!!!
LikeLiked by 1 person
Thank you! ❤ Wish you guys the best!