Please extend a warm welcome to the newest addition to the Living Well with Epilepsy site. Shelby Myers has offered to write a regular column from her own experience on Loss from Epilepsy. I hope you will take a minute to get to know Shelby and her story.
I am thrilled to be joining the team and to be able to connect with you. Let me first give you my background and then we’ll chat.
A little background
I am an incredibly proud mother of 5 wonderful children; a wife of 22 years to an incredible man; a daughter, sibling, etc. of an unbelievably strong support system – all of which inspire me and make me whole. In October 2012, one of my children, Clayton, got sick. He was a healthy, loving (the list could go on forever) 6 year old little boy up until that point. Then, he developed a “normal” back to school virus which went to his brain. He was placed in a medically induced coma for seizures which could not be controlled.
Then, 5 months later he came home as an infant. He was never able to walk, talk, eat or follow commands-–he could, though, give you a grin that would melt your heart. The doctors could not stop his seizures. We tried everything over the years, but his seizures had a mind of their own. We learned, cried, hoped and prayed, but to no avail. On a beautiful star filled night in August 2012, our little boy became an angel to Epilepsy. Now, I go on, as his voice.
Why write about loss from epilepsy
I agreed to write about loss from epilepsy for this blog because it is so important for our survival, as parents or caregivers. I want to be candid, like we are sitting down having a cup of coffee as old friends. As we all know, old friends are the ones that you can “spill out your heart” without any worry of condemnation or opinion – that will be me. I want you to post comments and together we will make it through the emotions of the loss(es) from epilepsy. Let me be a little more specific: loss of control (doctors, medications, your overall household and the way that you intended your/your child’s life to become); loss of independence; loss of friends (your personal friends and those of your child); ultimately, loss of a loved one due to Epilepsy, or the constant fear of loss of life. We are in this together and will address all of these emotions. Let me know what you would like to chat about, honestly and with no holds barred.
The real deal
I promise that I will do the same for you in my posts. There will be times when my posts may be sad–-let’s face it, Epilepsy is sad. There may be instances that I may be angry or you will feel my frustration within my posts. I hope that you will never read into my posts as “complaining”, but I hope that you will join me in “complaining” in the comments. This is an impossible situation at times, but we will hold each other’s hands.
I hope to write about the feeling which you hide. I say “hide” because after writing my memoir, “Out of the Bubble”, I was told (by those who know me) that they never knew how much I was struggling or feeling. Like you, I am sure, most people only saw me at my best. I promise you that we will inspire each other and laugh through our tears and frustrations- and don’t worry about commenting “at your best”- I have been there! So, grab a cup a coffee when you see my next post come up and join me for a chat. I am looking forward to it!
Shelby McGrath Myers is the mother to 5 wonderful children – one of whom became an angel due to Epilepsy in Aug 2012. She’s founder of Clayton’s Hope Org. Based in USA.