By Rev. Dr. Bill Matthews

“What It’s Like…”

hearts broken open dementiaI’ve heard my wife, Maureen, the Founder of To Whom I May Concern®, ask this simple question “What is it like?” more times than I can count.

I’ve been to every TWIMC performance since the first in 2006, where answers to that question have been shared during the performance and the interactive “talk back” phase, some even coming from audience members.  I’ve heard many stories, told with thoughtfulness and humor, and always with heart.

They share their hearts and ours are broken, or at least that’s how it feels at first.  We hear frightening personal experiences of having dementia, a dreadful progressive and incurable disease, and what it’s like to be treated badly by others because of it — as told by people who have it and who have the courage to tell it on stage.

Yes, these are heart-breaking stories.

Yet, in the hearing, our hearts are not only broken, but broken open — broken open to a new awareness of what it must be like, or what it would be like for ourselves to have these experiences.  And we are transformed — changed forever.

We are changed in ways we couldn’t anticipate and will never forget.

We cannot go back, we can only go forward, carrying with us the impact of these reports of what it is like, and we will never again relate the same way we did before to persons with dementia.  We can only pass it on, by acting and reacting differently with those whom we now know are having these experiences.

Let us embrace the transformation, and them, and let ourselves be changed…

Rev. Bill Matthews is a pastoral psychotherapist and ordained minister in the United Church of Christ.  Before retiring, Bill was Executive Director of the Stamford Counseling Center for seventeen years.

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