As I am reflecting on the inspiration and wisdom I gained from last week’s Pioneer Network conference, I am beholden by these beautiful words from Dr. Vivian Tellis-Nayak, who has been living with Parkinson’s disease (PD) for several decades, and has shared his deeply personal account with us.
“In sum, PD has not let up and is still hell-bent on bringing me to my knees. In ways vile and vicious, it has attempted to crumple my professional life and to crush my personal world. It has knocked me off pedestals and has brought tears, pain, and sorrow to those dearest to me. This meanest of teachers has made me walk through the dark tunnel of depression and the valley of defeat and shame. This searing internship, however, has taught me to cherish the gift of human life – the indomitable human spirit that can lift you from the ashes, the power of love that can rescue you from misery, and the healing bonds of family and friends – angels that can make you whole again.”
– From “Return of Compassion to Healthcare” by Vivian Tellis-Nayak and Mary Tellis-Nayak
Indomitable. Human. Spirit. I am taking a moment to think about the importance of each of these words. Such a powerful phrase when these words come together. Yet, something we can so easily forget about, until someone like Dr. Tellis-Nayak reminds us of its importance and presence.
We talk so little about this, in gerontology, in healthcare, and perhaps in our lives altogether.
But it is there! I have seen it. Have you?
The indomitable human spirit. That is what I see when I am with people with dementia. As these individuals try to make sense of the world while their brain is changing on them. As others look at them, and treat them, differently. I see the indomitable human spirit in their “behaviors”, not merely as nuisances, but as their voice, their frustration, their anger. I see their spirit in the lessons that they teach us, even when we are unwilling students, or simply too distracted in meeting their other human needs. As the world and people around them morph, I see people with dementia as being the constant, the steady, the true force. Their spirit prevails.
I see the indomitable human spirit in people living in nursing homes. They do not choose or expect to live there, in many cases. They go through their day, and perhaps they are not really seen. But have you ever touched the arm of an elder living in a nursing home, and when they looked at you, you almost felt a spark? I swear I have.
As Carter Catlett-Williams so beautifully pointed out, nearly 30 years ago, in her article “Long-Term Care and the Human Spirit”, the spirit of people living in nursing homes has long been unattended and neglected. (Perhaps it is neglected across the board, whether we are in nursing homes or not.) Yet, it is the most enduring, true part of us. It is there, even if we do not always attend to it. Graciously, it also sometimes nurtured, by the small and large moments in which we really see people.
The indomitable human spirit prevails throughout a nursing home. You can see it in the person who is rehabilitating her hip, working through pain, taking each step one at a time, so she can return to her home she has shared with her husband for 60 years. It is in the person who chooses to not eat that which is in front of him. Maybe this is because he does not like this type of food. Or maybe this is how he is exerting his influence and autonomy in this strange world of nursing home life. I envy the strength of this spirit.
The indomitable human spirit is also in the people who are caring for the people living there. It is a community filled with spirit, perhaps glowing with spirit that is within and between the people who live and work there.
Let’s take a moment and honor the indomitable human spirit in people who are living with Parkinson’s disease, who are living with dementia, who are living in nursing homes, and those who care for them. I am so grateful for people like Dr. Tellis-Nayak, who sheds light on this. I am going to keep seeking, seeing, and nurturing this spirit. Will you join me?