Alan O’Hare grew up in Dorchester, MA and attended Cathedral High School before continuing on to St. John’s Seminary where he studied family therapy. After leaving the seminary, Alan joined the Army Reserves for six years and earned an M. Ed. from Northeastern. Dedicating himself to helping others, he was a teacher and therapist for most of his life. Alan also founded the Life Story Theater where he wrote and directed over 20 plays.
Alan is a fascinating individual who crackles with energy and warmth. He describes himself as a “Seanchie” – or traditional Celtic storyteller. Through his theater company and the expressive therapy program at Lesley University, he strove to help others find their voices. To foster courage and willingness to share the love, triumph, failure, heartache, challenge, and joy of their unique lives.
Alan was recently diagnosed with dementia and I asked him, “Based on your years of experience as a therapist, educator and theater director, what knowledge or understanding would you want to impart to someone else about living with dementia?”
He said, “For me it’s the quote I gave you. It’s the thing that keeps coming back to me because I don’t always remember certain things at certain moments. ‘Be patient with everything that is unsolved in your heart and try to love the questions themselves.’”
I asked him to elaborate and he replied, “I can’t get that word. I can’t get that phrase. I can’t get that name. It’s like I don’t know what’s happening. So I have to take a deep breath then ask myself … what’s going on?
What’s going on is: I don’t have access to that right now. So I take another breath. It makes me sad at times. Sometimes angry, but not so much anymore. Just sad. I know it will come back to me. I know it will be somewhere and I will have access to it again. At this moment I don’t have access to it.
So I feel like some of what’s going on for me … and learning how to deal with it .. and it doesn’t feel overbearing .. It just feels like I’m going through a grieving state. I’m going thorough grieving over this part of me that I don’t have access to in the way that I once had access. And I really loved that guy. I mean I really liked him.
I think what I’m learning about me – and it comes from being a therapist, but more out of being in therapy myself – It’s about being here now. What is it in this moment that you treasure? What is it about you that you treasure in this moment? Can you remember what you love about you? What do you love about right here, right now?“
Alan is a creative spark plug and continues to write and create daily. We had a long conversation about the stigma of dementia and agreed that oftentimes society will focus on the clinical diagnosis or status of an individual, which can quickly become a powerful means to distance yourself from that person and their humanity.
Alan shared this musing on his experience of being invisible:
There are times when we meet someone we know and respect that we care for and has often been kind to us in providing services and resources, and our experiences have been usually quite positive.
There are other times we meet that same someone who is aware that we recently have lost someone close to us, but are not quite sure what to say and how to say it to us. Some of the possible reasons for that are that they are not sure we would be able to fully comprehend what they are saying or that we might not be able to take it in.
One such an experience happened today with my primary care physician, a lovely, bright and friendly man with whom my son and I met earlier today for health-related issues affected by my memory loss, and learning how to manage and adapt to my new regimen of daily medications and services.
After he communicated important information about the medication-related issues,as well as exploring the data of what I'm going through, how I'm managing it, and asking me questions about what I am experiencing with these challenges... he then turned to my son, Chris and expressed a genuine "sorry for your loss" feeling with a subtle glance in my presence as though I had temporarily left the room, and it hurt...it hurt quite deeply.
I felt quite surprised by the hurt and emotional injury when he had stopped seeing me as a whole person, but only as someone with the diagnosis of memory loss related issues that will continue to unfold and increase, and to whom he will provide the necessary data and resources, all of which are quite valuable.
I then began to more fully realize as I stood at the edge of this large, ever expanding ocean in which I am learning how to swim, sail and struggle that this too is part of this mysterious legacy that I have inherited along with millions of others in this same mysterious ocean each drifting away.
I have now become a new person in the eyes of some, including my physician, that is fading away possibly never to be seen from or heard from again, except, to quote Jack Webb from that ancient radio and TV show for “the facts, sir...just the facts.”
How sad, how truly sad that some of us have begun to stop seeing the whole person in our new sisters and brothers entering this land in which we are now learning how to live, grow and create in a whole new way.