Time to love

dementiaNICKIE GYOMBER

Ok, so we’re born, live, and then we die.

“There is a time for everything under the sun.”

But I’m not sure that it always feels like that. How about that time in between – when you’ve not yet died, but you’re no longer able to live as the person you once knew yourself to be? That time the tongue begins to still and the knowledge begins to pass…

You know, that time when you have your head injury, your stroke, or you develop dementia. Where is the time for that?

As a neurological speech pathologist, it is in this time that I meet and journey with people. I see and hear individuals and families looking to our health system, popular culture and philosophers, wrestling with what it means to live with a cognitive impairment.

Now we’re living longer, more people are looking for answers.

September holds both ‘Fight Dementia’ month and ‘Stroke Week’. So we’re about to be bombarded with the statistics of cognitive impairment. More than 350,000 Australians live with dementia. Up to 20 per cent of people who have a stroke will live with chronic communication impairment. Millions of Australians care for people for whom the tongues are still and the knowledge passes.

Dementia has become a public health crisis; it’s the fourth greatest ‘burden of disease’ in Australia, with stroke coming in third. Researchers are scrambling to find treatments and understand causes. It is good to work towards improving lives. But how does it feel to be told you’ve become a statistical ‘burden of disease’. Does it feel like there’s a time for you?

It takes, on average, three years from the time of onset of symptoms for someone to get a diagnosis of Alzheimer’s disease. Yet, earlier interventions have been shown to improve overall outcomes.

It wasn’t until the Enlightenment that our thoughts came to be seen as defining our very existence. As Descartes famously declared: “I think, therefore I am”. So what happens, then, when you can no longer hold onto your thoughts? Do you no longer hold onto yourself?

Our contemporary, the deeply rational and avowed atheist philosopher Prof Peter Singer, has added to this conversation. He writes that it is “entirely accurate” to describe someone with severe cognitive impairment as “an empty husk”, denying them the status of “personhood” because he/she lacks “rational awareness of existing, beyond the physical organism”. Indeed, without the capacity for clear thought, Prof Singer tells us there is a time to kill.

That person’s ‘time’ has ended.

Is that true? Once the tongues have stilled and the knowledge passed, is there nothing left but an empty husk?

Have you seen the woman who will no longer eat for anyone but her husband?

The mother who holds and smiles into the face of the son she can no longer name?

The young man who becomes enlivened when a dog races around his home?

The family who confidently claim that their dad is completely fine and engaged with all activities, despite his being bed-bound and non-verbal?

Without clear thought there is nothing left but an empty husk? Paul, who knew little if anything about stroke and dementia, knew what is left: it is not ‘nothing’, it is the greatest of all. It is love.

Health research, popular culture, and philosophy can’t always touch the truth that as rational awareness passes, love persists.

So where does this leave us, as a church? How do we make this a time to heal?

As an organisation, the Uniting Church runs nursing homes and provides pastoral care within health environments. But, of course, a church is more than the services it provides. The church is you and me: it is about our narrative, the story we carry and share; the story of the universality of the love of God within and beyond us all. How this divine light is not bound by thought or speech. Christine Bryden, who was diagnosed with dementia at 46, said this:

“I speak of where I stand as a Christian with dementia, and how I believe God relates to me and I to him. I speak too of your role in relating to people with dementia, in ministering to them, of how you can bring the Christ-light to us.

Is cognition the only measure of our presence amongst you as spiritual beings?

I believe that I am much more than just my brain structure and function, which is declining daily. My creation in the divine image is as a soul capable of love, sacrifice and hope, not as a perfect human being, in mind or body.

I want you to relate to me in that way, seeing me as God sees me.

Don’t abandon me at any stage, for the Holy Spirit connects us. It links our souls, our spirits – not our minds or brains.
I need you to minister to me, to sing with me, pray with me, to be my memory for me.

The liturgy, familiar hymns and choruses, the Lord’s Prayer – these are ways in which you can help me join with you in our walk with God.”

Dementia is just disease; stroke is just altered blood flow to the brain. They touch our brains and our minds but cannot harm the divine spark of love within. The effects can be devastating, but these things are not enough to separate us from God and should not be enough to separate us from one another. This is our story. We can find a time for this time.

Where there are tongues, they will be stilled; where there is knowledge, it will pass away. And now faith, hope, and love abide; and the greatest of these is love.

Nickie Gyomber is a lay preacher in training and gave this sermon – inspired by  1 Corinthians 13:1-13 – at St Andrews UC in Fairfield.

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