Wednesday, April 1, 2009

Filling the Void

~ How the Book CHASING NORMAL came to be ~

It is said that the Universe does not allow a vacuum. Whenever there’s an empty space, the Universe will promptly fill it. Much to my husband’s chagrin, this is absolutely true in our household. Thanks to me, our closets and previously empty spaces are full, always! I’m the space filler in our relationship.

When asked to discuss why and how I wrote the book CHASING NORMAL -A GUIDE FOR THE NEWLY DISABLED AND FOR THOSE WHO LOVE THEM, I thought “Well, it was meant to fill, what I perceived as, a void or a hole in the rehab system.” I have “atypical” CMT. I grew up walking with assistance of some kind— walking along walls and furniture, holding onto a friend’s arm, crutches, etc. So, as I’ve said in the book, I grew up chasing normal.

At 35 I was diagnosed with Trigeminal Neuralgia bilaterally. It’s intense, actually torturous, electrical shock type facial pain. The medication given for this pain is anti-seizure in nature. So, give someone with a neuromuscular challenge a drug that relaxes muscles and nerves and the result is life changing weakness. Suddenly I was dealing with severe chronic pain and a body that wasn’t behaving the way it had for 35 years!

As a veteran vocational rehabilitation counselor for the state, you’d think I’d have been better prepared to deal with loss of functioning, grief, doctors who wouldn’t believe the meds were causing weakness, etc. But, it’s one thing to counsel people through loss and quite another to journey through it yourself. The knowledge in your brain doesn’t stop the pain in your heart! During those initial years I would have liked to have been able to talk to someone else who was, not just surviving but thriving, through pain, weakness and loss. I looked on Amazon and didn’t see much that felt applicable.

I remembered what kinds of things I said to my newly disabled clients as a way of supporting their journey and I tried applying it personally. I returned to my job after my initial diagnosis and med change so I could walk again, and found myself repeating the same things to my new clients. They were the things I had said to my clients before my world collapsed. They were the things I wished someone would have said to me. I was finding myself wondering why these things were not in print.

Ahhh, now we’ve come full circle. We’re back to the void! –There’s another old expression, “as within, so without!” We see in the world that which exists within us. I perceived a void in the rehab system and I intended to fill it. Remember, I’m the empty space filler! And as a result of aiming for the space “out there” I filled in the void in my heart that wondered why I’d been given two disabilities. I reminded myself of the truths I believe in. My goal of helping others with new disabilities to see that life really could be worth living helped me convince myself of that very thing.

So, if you’re a newly disabled person, I wrote CHASING NORMAL for you. If you’re a friend or family member of someone with a disability, I wrote it for you. If you’re a medical or rehab professional serving people with disabilities, I wrote it for you. And by writing for all of you I gained peace of mind and heart for myself! May peace surround your journey too!!


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