I have decided to write a memoir.

I never thought I would really write a book. I have dreamt of it time and time again but did not think it would ever happen. I thought the reality was that I would want to do it but I would never in a million years actually start it. After all, my perfectionism is out of hand. Eight years of therapy and I still have no grasp on it. If that much therapy is unable to help it, what will? Well, I received that answer today when checking my email. I asked a published author of an amazing book for some tips. (The book and author I am referring to is View from the Floor by Kate Berger, in case anyone is interested.)

My email: "I just finished View From the Floor and have a question. How were you able to be so open and honest in it? I have wanted to write about my experiences for years but can't seem to find the right words. I've wanted to do it to spread awareness and as a way to cope but I struggle to begin writing anything. It's like I'm trapped in brain fog."

Kate: "Hi Rene,

I hear your struggle, and I’m wondering if the issue is being open and honest or simply getting started? It can be daunting to put pen to paper and, oftentimes we put the pressure on ourselves to say it perfectly the first time. This can keep us stuck for so long!

For me, I broke my experience down into chunks and just wrote what easily came, worrying about filling in gaps and putting it in order later.

You could start by writing the story of your very first seizure, or, jump in and talk about an experience with a friend that really made you angry. Find some of your most tangible, easily accessible stories and write those first. Advice I have heard before is - say everything in the first draft, then edit out what you don’t want publicly shared. Lastly, when I don’t know how to start, I ask myself a question and simply write down the answer!

Ex. When has a seizure made me miss an event I really wanted to attend? What diagnoses did I wonder if I had prior to my PNES diagnosis?

I commend you for wanting to share your story and hope this helps!

Katie"

I responded by thanking her. Reading those tips sent on August 15th that I just saw today when checking for a response gave me some hope. I even started writing some stuff in a Microsoft Word document for it! I have considered that, stared at a blank page feeling lost, and closed that same empty page dozens of times. This time, however, it is still open with almost a full paragraph. I never thought I would ever start writing it. As many times as I have tried, it felt impossible. Thanks to the advice from Kate and the encouragement she has given me, without us ever having met, I found the strength and motivation to begin.

I have shared bits and pieces of my own story, verbally, dozens, maybe hundreds, of times. I have never truly written about any of it before. Under a paragraph in and it is almost a cathartic feeling. My biggest goals in doing it are to raise awareness and make people struggling feel less alone. I know the loneliness all too well. I hate knowing that there are people who are also dealing with it. It is painful and often debilitating to feel these emotions.