#young onset

[parkybloke]

Limbo land

I had suddenly entered a strange new world.  They say that more than 80% of the ocean has never been mapped, explored or seen by humans. It would seem to me that in reality the brain is as much, if not even more of a mystery. In fact I have read that we only understand about 10% of how the brain functions. This goes someway to explaining why getting a diagnosis for something neurological is such…

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[tackingupwind-blog]

                                            Honoring Legacies

The backdrop was breathtaking. I could feel the hard metal of the gymnasium bleachers as I sat looking out the wide open doors to the campus of the school beyond. A young woman was talking, describing memories of a teacher she had at this very school, years ago. Behind her, I see dandelion fuzz floating on the air and landing in a garden where several young men are working the soil in a lush vegetable garden. It is a sunny, but cool day, and I hear the bleating of goats and clucking of chickens in their pens just beyond my sight. Feeling the cool breeze on my face, I look around to see the flushed faces of the other attendees. Some wiping tears away, others listening intently. In the front row of the lined up chairs, a bearded man and his two adult daughters sit listening to the story, their faces reflecting a combination of joy, sadness and pride.

The garden is being dedicated today to this man’s wife, these daughter’s mother. Today, her dedication and hard work in founding this school is being honored. Former students, co-workers and current administrators all take the podium to share the history of this innovative school and their memories of her teaching and inspiring leadership. Some stories are technical, others funny, touching, poignant. Many of the speakers describe the positive impact this woman had on their lives, the difference she made and what she taught them, not just about the English language, but about life. Poetry is read – mostly echoing her own beliefs about the importance of the connection to the natural world and how learning about it teaches you about the connection of all things, including the connection between human beings.

Her husband, sisters and daughters all speak – detailing their gratitude for her contributions to this school and to each of them as individuals. As I take a deep breath of the crisp mid-day air, I am overwhelmed by the importance and significance of this event.

This day is about celebration and gratitude. It is about the significant and important contributions this woman has made to her community, her family and the world. This day is not about the disease that has rendered her unable to attend, unable to speak clearly, unable to care for herself. She does not remember the stories that are told and cannot conceive of the impact that she has had on so many people. But we do. We are acknowledging, celebrating and giving thanks.

For many families and community members, it is difficult to know how to honor a person living with dementia. In many situations, it seems there is no appropriate way to do this. This is particularly difficult for loved ones of people with young-onset, like this family. For this family, this amazing person began drifting away from them just years after this school was founded. She was forced to retire at what was the height of her teaching career. The exit was awkward as many of her co-workers were not sure exactly what was happening, only that she was not able to manage the demands of the job and that her behavior was sometimes difficult to understand. For the family, this is devastating and almost immediately changes the focus to what will be progressively lost, rather than what had been gained. As years pass, and the management of the symptoms of the disease become more and more difficult to manage, the accomplishments of the past seem to fade into the distance.

For so many, there is a fear that by the time the disease has run its course, no one will remember or know how to acknowledge past contributions to the community and family life. This is a justifiable and understandable fear.

This dedication was an opportunity for those of us who knew and loved this woman to reflect on the spirit of this incredible person and the legacy she leaves behind. Doing this is so important for the emotional health and well-being of us - the survivors. Our capacity to endure this disease depends on our ability to make some sense of it – to intentionally acknowledge the purpose and contributions of our loved one’s life, maybe most importantly when the opportunities for those contributions are cut short.

I attended and experienced this dedication as a family member. However, I left a changed professional. I left with a sense of urgency around this idea – a driving force within me to find a way to help families struggling with young onset create these opportunities for themselves. Contributions come in many different forms – perhaps it was a ground breaking surgical method or career accomplishment, a volunteer position, a supportive parent. In order to withstand the duration and progressive loss of this disease, we must find ways to incorporate and learn from the gifts that each of these people have given throughout their lives.

And so I thank you, Joanie, my Aunt, for yet another legacy. You continue to teach me, every day.