Two years ago, my mom and I decided to write our story. Our book, Maze of Thorns, is about a mysterious illness I got that turned our lives upside down and pulled us into a desperate battle for my life. We wrote to help others find hope in their most difficult times.
What is CNS Vasculitis?
First, I’m sure you’re wondering…”What is CNS Vasculitis?” CNS Vasculitis is is the inflammation (swelling) of the blood vessels in the brain and spine (which make up the Central Nervous System). How the vessels in the brain become inflamed is not entirely clear. Abnormal antibodies attack white blood cells, which then attack vessel walls and cause inflammation and destruction. The inflamed vessels block the flow of oxygen to the brain, causing the brain to lose function. In some cases, as in mine, the vasculitis is life-threatening.
My CNS Vasculitis
When I started to get sick, within a short period of time, I lost my ability to speak, read, write and eat. Within weeks, I went from forgetfulness and confusion to grand mal seizures and hallucination. CNS Vasculitis is rare and difficult to diagnose, it took months to make a solid diagnosis. During this time, I slipped deeper and deeper into a catatonic state and eventually around the time I had a brain biopsy, my heart was beginning to stop and my family was asked to come say goodbye.
Before our Book
For the past 18 years, before we wrote the book, deep down I was angry that I got sick. The illness had taken things I had felt were “badges of success”, a great career, marriage, children, etc. I didn’t realize that by not dealing with my illness, I was never going to heal these wounds.
I thought hearing the stories might trigger memories since nearly 6 months of my memory is gone. Reliving the events of my illness and writing the book with my mom, didn’t trigger any new memories, but it did something far better, it gave me something I’d been missing, self-love. Even though, when my illness flares and I struggle with memory, organization and speech, this is my story. I am proud of it and proud of where I come from, an amazing, loving family with an incredible faith. The experience with my mom showed me that the imperfect and vulnerable me gives me the capacity for bigger love. Love is imperfection. Vulnerability deepens our hearts for understanding in turn, deepening our ability for love.
I think we all have a basic understanding of our greatest strengths. If not, that’s a whole other blog topic and I’d love for you to ask 5 people what you are known for and you will have them. My gifts are crazy determination and grit. Some call it stubborn, ha ha! After I got sick, I poured myself into getting my life, and career back, but always felt wounded and lacked confidence about my mental abilities. Always wondering if in the middle of a presentation at work I would lose my words as often happened. During my recovering there were hours of flashcards about nouns, verbs, sentence structure and basic math. Yes, I had to relearn how to walk, talk, read and write. It still brings tears to my eyes to write that. It was a very hard and humbling time. I was ashamed of myself many times, but I was fiercely stubborn as I still am and determined to make it back.
I found a niche in putting my energies into my physical gifts as I’d always been a pretty gifted athlete. Whether it was running, fitness, golfing, waterskiing, I strived to be the best because it never failed me. My body was healthy, but my mind and spirit were broken. Writing the book brought me a peace in loving myself in all my imperfections. And I would truly say, I believe I can be a much better help to others having experienced this.
Body, Mind and Spirit all need to be healthy for us to be whole and love fully.
Our book a message of hope to people struggling with life’s difficulties. Life may not be perfect after but through faith and hope, you can find a life again.
Love, Kris and Sherry