Locked-in Syndrome

I'm on a mission to raise awareness about a rare condition called locked-in syndrome. My neighbor, Dan, a 34 year old world class drummer, has been locked in now for two years, due to a brain stem stroke. He has been completely paralyzed except for his eyelids, and cannot speak, yet he hears and understands everything going on around him. I had never heard of the condition before this happened to him, and I recently learned that many people do not survive this kind of stroke, and that 90% of people who are locked-in die within four months. Dan is an amazing guy; he's talented, fun, and full of life. That's why I pledged to donate 5% of the first years profits from my book, Learning by Accident, to Dan's Trust.

In my opinion, Dan is alive today because of his parents, Chris and Tom, the two most incredible caregivers I have ever met. They have given up just about everything to take care of Dan around the clock with very minimal help. When Dan arrived home after a few months from stays in two different hospitals, he had bedsores and no muscle tone. His dad, Tom, an architect, built a standing frame to "get Dan upright" a few hours every couple of days, and his family has worked tirelessly to stretch and strengthen Dan's muscles. They also devised a way to speak to Dan. Dan looks up for "yes" and blinks for "no" and they have an alphabet system to spell words with Dan, but this provides only minimal communication. Chris, Tom, and especially Dan work hard every day with the hope that Dan will speak and live independently again. And he IS making progress, but it's slow, as is the case with all brain injuries. Incredibly, they are not bitter or negative; in fact, their home is full of hope, love, and some of the most amazing food you ever tasted! Dan is a self professed foodie, who watches the food channel and has his mother whip up all kinds of wonderful concoctions. He can only eat pureed food because he cannot chew, and a lot of it comes from their flourishing backyard garden.

If you have any encouraging stories or news about locked-in syndrome, please contact me. To learn more about Dan and to help his family, check out Dan Duggins Trust on Facebook and watch Dan's progress at: Watch Magic Happen on Facebook too.

Serenity

Many people have asked me if my faith has helped me as a caregiver.  I'm often reluctant to answer with more than a short, "Yes."  I have always been private about my faith and yet I consider myself a deeply spiritual person. I pray constantly, for family and friends throughout the day, and every time I hear an ambulance go by. I've tried meditating to quiet the noise in my head, but have not been able to master the practice. The prayer that has helped me most, and that I repeat to myself daily, is this section of the Serenity Prayer.

It's simple, yet profound. I find it comforting as well as informing. This simple prayer helps calm me when I want answers and I'm not sure there are any. What words or meditations help you when you try to destress or need an emotional boost?

Carefree

When I was a full-time caregiver, I wondered:
What must it be like to have an uninterrupted life?
What must it be like to have everyday worries that don't involve life and death?
What must it be like to feel carefree?
Of course I knew the answers, because most of my life had been that way--full of fun, relatively stress-free. I had a charmed life. Until my husband was run over by a car, and my father started acting strange (dementia) and my mother was told she was dying.

I now know what I didn't know before--that we all have freeze-framed times in our lives. Some last just a moment. Others freeze for years while life on the "outside" plays itself out. I remained in my frozen bubble for sometime, but in 2010, it melted, and I came back outside to join the parade. And yet, as I join in the daily run around of every day, I am now acutely aware of those that are locked in their freeze framed airless time zones...my neighbor, who had a stroke at age 34 and still cannot walk or talk on his own.  The people I have met who have endured injuries and illnesses far worse than I could ever imagine.

Can you ever truly forget once you have been touched by deep sorrow and loss?
Is there ever such a thing as feeling carefree again?
Maybe not, but there is peace. And there is great joy in helping those you know who have entered the dark place where you had once been.

Helping heals.