My Epilepsy Story

Struggle

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Fall has set in and winter is approaching quickly…. I have not written in quite some time. I have been asked, “When are you going to write again? I am waiting to see your next update.” I have sat and pondered on what to write about. November is Epilepsy Awareness Month and there are so many things to write about in regard to epilepsy education, safety, stigma, etc. I have also seen the updates from so many friends about the struggles they are facing with epilepsy or the ones their children are facing.

So, today I wanted to write about the struggle.

Struggle means: (v) to make forceful or violent efforts to get free of restraint or constriction (n) a forceful or violent effort to get free of restraint or resist attack.

When someone has a seizure their body is struggling to “resist the attack”, you see their body fights the seizure that is taking place. As an innocent bystander watching this happen, it can be one of the most frightful things to see. Some people run to get close to help the person and others stand back in fear or even shock. The person having the seizure is helpless…. The person that loves them is helpless….

The struggle continues well beyond the seizure. It continues for hours, days, and even years beyond the seizure. Families are torn apart by the struggle, the struggle to make it through another day, the struggle to emotionally deal with what is placed in front of you, the struggle to pay for the medical expenses, the struggle to find the right medication, and the struggle to find peace so you can escape “the struggle” even for just brief moment. At night, as I lie in bed and think of my struggle with epilepsy, I know that my struggle is different from so many others. My struggle is not seizure freedom, it is a struggle of how do I help my son, health insurance, cost of medication, helping others with epilepsy while managing my family, pushing the My Epilepsy Story organization forward, and how to remove unhealthy people from my life that are pulling me down. Everyone struggles, it is how we deal with the struggles that define us. Who do we surround ourselves with during the struggles? Who do we turn to during the struggles to help us?

I have been very fortunate to have four people guide me through the struggle of starting a nonprofit and making it successful. These people are sharing of their time and talents to help me thorough my struggle so I can help others. When we sit down and focus on what we need to get through “our struggle” and step back to examine whether we have the right people surrounding us during this time you will find that maybe you just need to stop for a moment and regroup.

Sit for a moment, write out a list to figure out what you need to learn from the struggle and where you need to go from here. Don’t let your struggle steal your joy, steal your family, or break you. “Resist the Attack” just as the body fights to attack the seizure. Make sure you surround yourself with “healthy people” that encourage you. Find people that build you up and remove yourself from people that love the “drama of life”. Just as a seizure ends, the struggle will end. Will it be easy? No, but when you rid yourself of all the unhealthy things about the struggle and you will find that you have become a stronger person in the end. My struggles with my son and epilepsy have made me a stronger woman, wife, mother, and advocate. I look forward to standing together with you in the struggles of life for the next year, 6 years, 16 years, 26 years, and beyond. Who is holding your hand as you go through the struggle? But most importantly, Who’s hand are you holding? Are they pulling you up?

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Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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