Brain Change

Laura Crawford was diagnosed with Parkinson’s Disease. Laura and I share the disease, but not the  same symptoms or emotional responses. My symptoms are rather mild. My functions are fairly stable. My attitude is mostly denial. Crawford has had different reactions, responses and outcomes that include becoming more visual than in her pre-PD days. Below is her way of visually describing her journey. She recently produced a book yet to be published titled C Is For Caregiver. I asked her how graphics and design are used to help normalize her new life.

What inspired you to do C is For Caregiver?
You had to have known me way back when to understand how much I’ve changed, so I’ll sketch you a “before and after” picture.

I started reading very young. I recall the day when—as a child—I ran to tell my parents that I had just read my first book “without pictures.” It felt like a milestone: I had fully graduated into the world of words, and did not need images as training wheels to ride into books crowded with tiny print. And from there I read, and read…

I always had a book propped on the table while I was having breakfast, lunch, and dinner.

I read during recess time (I was not a popular kid). Just as an example, I could recite all 109 stanzas of The Ballad of Reading Gaol, or The Raven, by heart, and lots of Shakespeare. My classmates thought I was weird (I thought they were mean), the teachers were concerned because I was always behind a book and did not socialize (my answer: “Why would I want to do that?”)

I read in Spanish (my native language), in English, in French, in Italian, and even Portuguese. Thick volumes did not daunt me. I browsed for hours in bookstores. My room was a cocoon of books and my vocabulary was vast, because I loved etymologies and had a notion of Latin and Greek word roots. Of course I studied literature. What else?

The part of my brain that processed language hummed and ran like a sports car. In the language racetrack I could say: “Eat my dust” while confidently showing a finger.

That was the “before” picture of me. Now let’s go to the “after.”

When you were diagnosed with Parkinson’s what was your first thought?
I was diagnosed with Parkinson’s Disease in 2014. Yes, I thought “My life is over”, and after much crying and wailing remembered my dad’s phrase “It is what it is, so get over it and don’t lose your sense of humor.”

So I embraced my Parkinsonality as another part of who I am. Tough? Yes, especially when my language engine sputters and coughs like it’s about to die. At first I only focused on the shaking and the rigidity, but then it became evident that the major changes were cognitive.

You mentioned to me that you used to write, now you can only make pictures? What was that feeling?
I have generally stopped reading (and watching TV, by the way). Now I don’t even read the newspaper anymore. I went on a 7-day cruise and never bothered to pack a book. Would that have happened to my former self? NO WAY.

It’s not that I can’t read, I just don’t. Now I sometimes struggle for words, or the wrong ones come out of my mouth. Yes, I have literally heard myself say cat when I meant dog.

But even as my body stiffens as if full of drying concrete, I am happy. I now obsess over images, colors, patterns. Not bookstores but art supply shops are my browsing destination. More importantly, I am so in the now! I’m doing what I love, and want to share that feeling.

Did you know then that you had to do something that would contribute in a positive way to youreself and others?
A couple of years ago, in full-blown serendipity, I met Dr. Chris Sapienza online. She designed the EMST-150, a simple and wonderful device to strengthen breathing capacity. I sent her one of my doodles, she liked it and asked me if I would like to illustrate a book for caregivers. Of course I wouldn’t like it. I’d love it! I answered, and—damn Parkinson’s—proceeded full speed ahead. Now all those pens and colors and sketchpads had a p.u.r.p.o.s.e. Off they went on a mission.

What do you want people to learn from it?
If anything, Parkinson’s has made me very aware of the human condition we all share. Let me put it this way: I feel overwhelmed by compassion. The way I see it, we are all strung together in this mesh of life and all stories intersect at some point. Pull on one personal strand and the whole web feels the effects. “Pull gently and with care!” I told myself, and decided to make kindness my guide. If this book—or anything I do—alleviates or guides someone else’s journey, I am content.

How do you intend to distribute this book?
Publishing is not easy, though, so we have decided to start a pre-sale of the book to gather funds. We figured it out like this: you go to our website, www.cisforcaregiver.com, and, dazzled by our marketing skills (bad joke) you pre-buy our book in the eshop. You put in the code ITSCOMING and get a discount ($18.00 down from $25). If you buy in bulk—hint, hint, institutions and organizations—you get better discounts.

Let’s say you embrace the pitch and press the Enter key to buy this book that joyfully took a couple of years to prepare. We send you the digital version by email so that you can read it right then, and sometime in the summer, with the warm weather, you get your 8″x8″ hardback copy.


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