Thoughts from Below

It’s welcome weekend at the college.  New freshman have moved in and the energy that abounds on campus is… well… energizing!  As part of our orientation activities, today we offered several service projects.  One opportunity was to make homemade stress balls out of un-inflated balloons filled with either rice or flour.  Some of the stress balls will be delivered to a local elementary school and others we delivered today to our local assisted living facility.

I volunteered to lead the visit to the assisted living facility.  When mom moved to Virginia last year, this was where she moved.  It lasted about two weeks, and then it was evident that she needed to live next door in the facility dedicated to those with dementia.

When the students and I entered to begin our visit (“meet and greet” games, discussing stress and how to use a stress ball, enjoying cookies), I realized that I recognized several of the residents from mom’s short stay last summer.  And they remembered me.  These ladies are probably in their 80s or even 90s.  They are frail, one carries oxygen.  Their posture and their bodies show their age, but their minds are amazingly clear.  I was amazed that they remembered me when I had only interacted with them briefly so long ago.

As we began our program, all of the residents sat on one side of the tables and all of the students on the other.  There was a clear “us” and “them” even though no one intended it.  Then we began to answer questions.  “Raise your hand if you’ve ever ridden motorcycle.”  Half of the older adults raised their hand.  Half of the students raised their hand.  There were sly smiles exchanged, and suddenly the “us” and “them” lines blurred.  Next question:  “Raise your hand if you’ve ever been to Europe.”  Again, about half of the students and half of the older adults raised their hands.  Stories were exchanged about who had travelled where.  “Raise your hand if you’ve ever met a famous person.”  I told my “Jimmy Carter in the elevator” story.  An older adult told her “Reagan came so close I could touch him but I was told not to speak to him because we were on a military base and it was all business.”  A student shared her story, “This summer I shook hands with Justin Trudeau.”  All three stories had everyone listening and shaking our heads.

In the middle of our sharing, the staff next door where mom lives walked her over so that she could join in the program.  Many of the residents where mom lives can’t carry on a conversation.  Mom still loves to talk and visit, she just has a limited scope of topics to discuss and depth to which she can discuss them.  She was glad to join us but couldn’t understand what a “stress ball” was.  The residents of the assisted living home loved the stress balls.  They practiced the exercises that are useful with them.  Mom can’t do that.  Learning something new is too hard for her right now.  But she sat and smiled and loved the gathering.

The afternoon together was beautiful.  Stories were shared.  Names and hometowns were exchanged.  There was no “us and them” by the end of our visit.  Those who could learn something new learned it.  Everyone told their story.  Everyone listened.  A tray of cookies was passed around.  Some at the table are undoubtedly nearing the end of their earthly lives, mostly looking backward and remembering.  Others at the table are embarking on a new journey, beginning their college education.  They are full of promise and possibility, mostly looking forward.  But everyone was present.  No cell phones were out (I forgot to even take a photo) causing distractions.  No one was regretting the past or worrying about the future.  Everyone was simply present.

The schedule said we would be back on campus at 4:00 p.m.  I’m not sure when we left the parking lot, and we were probably only a half hour late, but it’s nice when an experience isn’t dictated by a schedule.  We were present at Hanover Manor this afternoon:  new college freshmen, older adults in assisted living, a middle aged chaplain, and a woman with dementia from next door.

Today’s event was not a religious event.  But today I caught a glimpse of the Kingdom of God.

My friends are going to get nervous.  This is the second post in a row about something a friend said.  I promise, it’s not a trend.  You can talk to me without being quoted here!  But a good friend who has been through a very, very rough season recently remarked “Those blog posts… man…” and shook her head.  Ok, that may not be an exact quote.  But I realized that to her my words here are hard for her to read.  They are heavy, full of mortality and pain and they remind her too much of her own pain and struggles.  In hearing her words, I realized that my intention is quite the opposite.  I hope to write words that, despite the hopelessness of dementia and disease, are full of life and meaning and hope.  This is meant to be an empowering blog, a place of hope and redemption.

The heart of the Christian story is redemption.  Right?… life out of death… light in the darkness… peace in the storm.  Here’s where this blog becomes my pulpit.  These are intended to be words of life, of truth.

The prosperity gospel is not THE Gospel.  Having an illness, a diagnosis, is not the opposite of being “blessed.”  We are mortal.  Our bodies will all age and change and eventually die.  Disease or death is not “failure,” it’s simply a part of life.  How we respond to disease or react to the death of others (or our own impending death) is at the heart of one’s Christian life and worldview.

I am not discouraged, and I am not down.  I feel God’s presence even more strongly now that I’m aware of my diagnosis and my genetic frailty.  In my weakness, God is strong.  That is not a depressing thought, it is an empowering truth.  I don’t have to do this alone.  None of us do.  If you are raising a child with profound special needs, you aren’t alone.  If you are married to a partner who has serious mental health challenges, you aren’t alone.  If dementia, cancer, Parkinson’s disease, arthritis, or any illness is affecting your physical body in noticeable ways, the disease has no power over your spirit, your soul.

These “Thoughts from below” are serious, they aren’t light-hearted and jovial.  But I pray you don’t find them depressing.  If so, I’m missing the mark of what I feel called to write.  I am hopeful.  Hopeful that there will be a treatment by the time I begin to have symptoms?  Yes… but that’s not what this blog is about.  Ultimately that’s not what’s most important.  I am hopeful that no matter if I begin to have symptoms of dementia or go farther down the quiet, mysterious path of memory loss, I will not be alone.  My life will not be without beauty, meaning, and purpose.  I am more than what I can do or what I can say.  You are too.

So be of good cheer!  If you are reading this, you are enjoying the precious gift of life.  Enjoy it… do not take it for granted.  Use it well.  Give thanks.  And live!  That’s all I’m trying to do.  And I think, it’s enough.

Yesterday my friend H. told me a powerful story of his mother’s final days.  The medical professionals had called him and his siblings to her bedside because, based on their experience, along with her labored breathing and lack of consciousness, her time was very short.  They didn’t expect her to live through the day when they called her family to her side.  But she lived another five days, as I recall his story.  H. smiled as he recounted those days shared at her bedside.  They were among the strongest bonding moments he ever had with his siblings.  He spoke of laughter and tears, stories and prayers.  “I believe she gathered us together for that special time,” he said.  It was her final gift to her children.

I loved his story.  I always love what H. shares; he’s one of those people who has a way with words.  But this story in particular grabbed me.  It wasn’t a conscious decision that his mother made to linger for five days before departing this world.  It wasn’t her mind, her thought processes, that allowed her to give her children that gift.  H. gives testimony, I believe, to the fact that God is at work within each of us.  God’s Spirit nudges and moves us, lights a fire within us, or stops us in our tracks.  The Holy Spirit is that indescribable, uncontainable force that is more real than physical items around me, than the figurative brick wall in front of me.  And that Spirit moves within every human being:  a newborn baby, an elderly man with dementia, a twenty-year old college student, or a special needs teenager who is unable to look you in the eye.  Cognitive abilities don’t limit the power of the Holy Spirit.

None of us know for sure how to explain things like a loved one outliving a doctor’s prognosis and creating space for deeper relationships among her children.  Maybe it was coincidence.  But I don’t think so.  I believe God is at work among and within us all.  And… here’s why H.’s story grabbed me.  Most of the glorious stories about the movement of God’s Spirit involve conscious decisions to follow, to cooperate with God.  Whether it’s Saul’s conversion on the road to Damascus or Moses at the burning bush, we hear sermons over and over again about our conscious, mental decisions to follow God.  But H.’s story is about his mother’s partnership, her cooperation with God’s Spirit (Spirit = breath) to continue to breathe even after she had closed her eyes and silenced her voice forever.

No, she did not have dementia, but she was 96 years old and her time had come.  But how beautiful that her final gift was this holy partnership between her (her laboring lungs and tired heart and exhausted muscles) and God’s Holy Spirit.  It was not a conscious decision to hang on for five days, but it was nevertheless her gift.

Oh the possibilities that creates!  In what ways do we all cooperate with God without even realizing it?  And once I lose the ability to make a decision, to recall a decision, or to even care about a decision, there is yet hope that I in my bodily form may yet cooperate with the Holy Spirit in ways I can’t imagine.

A few days ago when I went to pick up my mother from the Alpha House, one of the residents was walking around giving everyone hugs and saying that she loved them.  This woman often is agitated and appears uncomfortable.  But that day she was spreading love!  Perhaps she too was responding to a nudge from the Spirit that those of us with busy minds might find a way to ignore.

Of course, I don’t know this for sure.  Maybe the affectionate woman was on a new medication.  Maybe H.’s mom simply had a very strong heart muscle and it wouldn’t stop beating.  I don’t know.  But a new hope was stirred within me as I heard his story.  Hope.  Faith.  Honestly, going into this dementia journey, I think I’d rather carry hope and faith than knowledge.  Knowledge won’t last long when dementia calls.  Hope and faith, I am trusting, will be with me until the end.

Tonight I attended a wonderful discussion led by two area faith leaders: a Presbyterian pastor and a Jewish rabbi. The focus was on a biblical ethic of community, and the discussion was rich. We discussed how we define community, how we know who is in (or not in) our community. We looked at scripture and tradition to consider how our ideas of community are formed.

Near the end of the discussion we acknowledged the privilege all of us around the table enjoy in terms of having choices about communities to which we belong. We considered that many may not feel that they will be accepted in certain groups or communities.  Real barriers exist.

I didn’t share with the group, because it was a large group, but my thoughts went to dementia. What communities am I a part of now that I will someday cease to be a part of when my abilities change?

Conversation topics with my mom are limited. We have the same conversations over and over, but clearly she remembers key communities: the Cairo Syrupmakers high school band, both the Baptist and Methodist churches she attended in Statesboro, a close group of friends known as “supper club.” Others she seems to have forgotten: a sorority, a garden club, an office staff. But nearly 15 years into this disease and having moved out of state a year ago, it’s hard to say that she is genuinely a part of her former communities. She’s just not capable, and she’s far away (though she does still receive notes and cards from many thoughtful friends and family.)

I can’t help but wonder what communities I will remain a part of once I begin to lose words, memories, and reasoning skills.  If I move into the same assisted living facilitly as mom and stay a part of this small town, will I still be a part of the Ashland town community? Will the church where I’ve served and participated for years continue to come to me even when I can’t come to it? If I remain in the same role at the college where I work for years to come, will I have gained a permanent community even after I need to retire? I wonder…

But you know, tonight’s discussion was about community, it wasn’t about me. And I’m grateful for the many fresh angles of vision I saw around the very long and loud table. So I end this reflection not even caring about the answers to the questions I just posed. Instead, I turn the questions about myself into questions about community.  I am thinking of a long-time Ashland resident who has just moved into assisted living at the edge of town. I’m thinking how I can continue to be in genuine community with him. I’m thinking of the church I love, and I’m picturing a long-time member who is no longer able to attend services. I realize I haven’t reached out to her in a very, very long time. I’m going to do so. I am thinking of two retired college professors who are still geographically in our community and considering ways to connect more deeply with them.

So… what does it mean to you to be in a community? I am seeing more clearly what it means to me.

As a United Methodist elder, I’m ordained to a ministry of Word and Sacrament.  I thought going into this, back during the mid 1990’s, that the exciting part of ministry would be celebrating the Sacraments.  There’s something amazing, beyond my comprehension, about standing before a congregation and placing one’s wet hands on the head of a newborn child, a kneeling teen, or an adult who comes forward for baptism.  There is a mystery each time I lift up the bread and the cup in the Lord’s Supper proclaiming God’s presence and trusting in God’s action among us.  But… what has really surprised me is how incredible the ministry of the Word has been for me.

I never imagined myself as a preacher when I was younger.  I was drawn to pastoral care and to teaching.  I figured I’d just do my best when I stood in the pulpit.  What I’ve found is that my gifts are rooted in words, that preaching is the most natural and most fulfilling part of my ministry.

For many years, I preached every Sunday morning, but now that I serve as a college chaplain, I only prepare and share sermons occasionally.  Thus, I am starting a blog because, although I truly love my vocation as a chaplain, I feel called to share words, to share the Word, more regularly.

And then there’s the other reason.  If you know me well, you know our family history of dementia.  My mother has early onset dementia.  Her brother and her mother had it, also.  Modern science has uncovered all sorts of new knowledge, enough that we know exactly what type of dementia our family bears.  My doctors know not only what chromosome is affected in our family disease but also how far out on the strand of the 17^th chromosome that the problem occurs.  Science can tell us so much!  And it tells me that I have the defective gene, and that, unless a treatment or cure is discovered in the future, I, too, will have early onset dementia.  Around age 55 seems to be the year that things fell apart for my mom, my uncle, and my grandmother.  I’m 46 as I write this first blog post.  I can’t know for sure when the effects will begin to be noticeable, but I do know at some point I will begin to lose words.

How do I lose words without losing myself and my purpose?  I don’t have the answer, but I am determined to live into the answer with faith, with openness, and with hope.  I am titling this blog “Thoughts from Below” due to inspiration from Bishop Ken Carder’s recent blog post entitled “Voices from Below.”  Bishop Carder was quoting Dietrich Bonhoeffer’s well known words:

“There remains an experience of incomparable value. We have for once learnt to see the great events of world history from below, from the perspective of the outcast, the suspects, the maltreated, the powerless, the oppressed, the reviled – in short, from the perspective of those who suffer.”

Bonhoeffer’s words along with a recent exchange I’ve had with Bishop Carder remind me that my genetic blueprint is not cause for pity.  It’s simply a part of who I am, which means it is a part of my giftedness.  And if Ministry of the Word is my calling, then I have something to share even as I someday begin to lose words.  In fact, I have a responsibility to share.  Perhaps I can help those who do not have dementia catch a glimpse from the perspective of one who does (or who will.)  My thoughts and experience are not the voice of a “highly” educated professional, rather from a lowly individual who visits her mother daily in the dementia-care unit of our small-town assisted living home.  These visits trigger fear, anxiety, dread… and beauty, acceptance, curiosity.  My thoughts are thoughts from below where questions are more plentiful than answers and fear threatens to consume hope.

The title “Thoughts From Below” reflects my position of vulnerability, and it also captures my nearly constant awareness of my diagnosis.  Someday my memory will slip from me, my reasoning skills will abandon me, and even the most basic words will escape me.  This awareness is almost always just below the surface.  I rarely speak of it, but it shapes and informs much of what I say and do.  What I share here is to give you a glimpse below the polished surface I usually present.

Thank you for visiting this blog.  Here I hope to share words and to share The Word.  Even when words begin to fail me someday, I hope to continue to write until words leave me entirely.  Perhaps then someone else will pick up the pieces of the words I leave behind and build upon them, building something even better and brighter.  Even in death, I believe there will be new life.  My faith is built upon a belief that the Word of God was once made flesh.  This reminds me that my frail journey of human life is sacred, and yours is too.  Every breath is a gift, every word is a treasure.

Thanks be to God!

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton