Friday, January 17, 2014

The Real Story

Ha. I did it! I'm posting, and it's a Friday. Boom.

Since the beginning of the blog a few people have encouraged me to turn my story into a book. Many have recommended just pulling together some of my blog posts, probably just because it would be an easy solution, and I appreciate that. The problem is that from the moment of that first headache, I have edited my story. Big key pieces. Major details. A few friends, and of course family, know bits of the truth, but only Danny and I know everything. Of course, as I have lived deeper and deeper into this diagnosis, I have lessened my editing, but there are (what I believe to be) significant details that people need to know in order to truly understand our lives, and this journey.

I started writing my story last year, and remained with only a page and a half until recently. It has been hard to feel motivated. The whole concept was overwhelming, in fact it was emotionally draining. The catalyst, my inspiration, was my new desk. My grandma is now living in a physical rehab facility, she can no longer live alone, so I became a proud owner of a really cool roll top desk. Somehow, with all the little compartments, and drawers, and the neat way it closes to hide all my junk, I get excited to write. I even came up with the perfect plan, and it has been working. I'm writing a page each day, M-F.

The thing that people don't realize, can't comprehend (not their fault), is that this story - although I've been writing it for years - is my life. Fingers have been in my brain. Literally. A few times. It's emotional. It's shocking, and almost unbelievable. The tricky part is that you guys don't know the whole story, the truth of what all happened. When I read the first four pages the other night to Dan, I slowly spun around in my chair to see what he thought. It was dark, and all I could see was the silhouette of his head. I stared at him, confused as to why he wasn't speaking, but when I moved closer I realized he was crying. Not a sob cry, but tears streaming down his face cry. He loved what I wrote, but it was still hard for him to hear. Hard for him to relive. Painful to go back to that place. This is real, and it was big. And to relive it each day by writing it out will be taxing. For a hot minute I thought writing it all out would be therapeutic, but quickly I realized that was stupid. I don't need to go back to that time to work anything out, or process things any further. Regurgitating all of the memories, and feelings, are necessary to write the book, but not necessary in life.

The undertaking of writing this book, of putting it all in a concise story, piecing it together, is very, very tough. My goal is to finish a rough draft by the time I hit 35, which is in a year and a half.

It has been incredibly helpful to do this blog, to document, and share, but there is so much more to tell. And finally, I'm ready to lay it all out there.

My new writing nook:

And when I'm done with the intended makeover it will look somewhat like this:


  1. Love your new you & Dan! Follow your heart;
    Much love ...Linda

  2. "So Cal" PattiJanuary 17, 2014 at 8:07 PM

    Love you Jess and think of you everyday as you are always mentioned in my prayers each night! I have continued to follow your blog and cheer you on but have not written in awhile as I have had a rough medical year! I am so excited that you started your book as I am one of the ones who have been encouraging you to do it! And that great desk will be a perfect inspiration for a budding young author! I so enjoyed the one time that we talked on the phone and would love to correspond by email but I lost your email address. I know you are cutting back on all that communication but please call (949)631-8665 or email me at if you ever need a pick me up! I am still your biggest fan and am thankful for all of the inspiration I have received from your story that helped me during my medical issues! I'm back, doing better, and will continue to comment on here! Love, "So Cal" Patti

  3. You continue to amaze and inspire me! I support you in all that you do and am so lucky to know you--the little that I do :) You and Dan are remarkable in your resolve, dedication and courage and I have absolute faith you will continue to astound with your book. Thank you for trusting all of us enough to share your story. You are an amazing gift to this world!!
    Much love always, Maleka

  4. You have so many amazing people who love you, some you have never met! You have a fan club rooting for you, cheering you on. The president of that fan club had tears of love streaming down his cheeks because he loves you so very much! Understanding why things happen, not always possible. Understanding that you have unconditional love, a treasured gift. Looking at what we have, and not at what we do not have, true vision. Having gratitude every single day, encouraging. Feeling loved and adored, simply magic...

  5. Hi Jessica, I really enjoyed finding your blog tonight and stumbling across your positive attitude.

    Our 1 year old son has been fighting his own astrocytoma for about 8 months now. It is an inoperable, malignant, pilocytic astroctoma, optic glioma and we have found the absolute best medicine has been love and laughter :) Bede is to young for radiation so our options are limited.
    Im not sure if you'd be interested but we blog his story at

    Anyway finding such a positive blog was such a pleasure I wanted to wish you all the best and I look forward to reading some more of your posts :)

    1. Issy, your blog, and your story are profound. I am so happy to see that his tumor has shrunk by 50%!! Yay!! I'll be thinking and praying for you and Bede. Thank you for stopping by my goofy little blog. Keep fighting the good fight, you guys will be in my heart.

  6. You mother once told me 'Jess is a word girl'

  7. That's beautiful. I'm so jealous of your space. I feel the same way about writing and reliving the story--quite frankly, that's why I never have done a blog. My mom wants me to write a book about my story but I'm not super excited about the idea. I'm glad that you are feeling up to writing. Best wishes in the process. Hope it brings some resolution and also encourages you in how you have helped so many people along the way. Your brain tumor friend.


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