Thoughts from Below

About once a month, I take mom to church with me. She can’t tell you the name of the congregation or the names of the friendly people in the pews who greet her so warmly. It’s like being a first-time visitor each time she comes, as she asks me questions about what to expect. But once the service begins, everything falls into place. She sings along with the hymns, recites the Lord’s Prayer, receives Holy Communion, etc. I’m always glad to worship beside her.  

My mindset, I confess, is often focused on what she receives when she goes to church. Did the music touch her heart, did receiving the Sacrament seem meaningful to her, did she recognize prayers and litanies?  

How often do I focus on what she brings to the congregation, what gifts she shares? Yeah… the very things I talk about and write about. Still, I admit, so often I’m caught up in the needs of the moment (can she read the words on the screen? Does she need the restroom, is the pew comfortable enough, etc.) that I can forget that her presence adds something to the Body of Christ. Today, she reminded me and my friend that she has something to share. 

It happened during the Passing of the Peace. In our congregation, this occurs about 2/3 through the service when everyone stands, mingles, and greets those nearby. Mom always enjoys this part of the service, and I enjoy seeing her in conversation with the community members I love. Today, several friends had already shaken mom’s hand and exchanged warm words, when “Friend” approached us. “Friend” was smiling and giving off warm, friendly vibes. “Friend” is a sensitive person who reaches for mom’s hand and looks her in the eye as she greets her. “Friend” and mom exchanged smiles and warm greetings then as “Friend” stepped back, mom said softly “Don’t worry. It’s gonna get better.”  

“Friend” and I locked eyes. Mine filled with tears and I think hers did too. Everything about our interaction had been joyful. Why these words from mom?  

“Friend” is grieving the recent loss of loved ones. Yes, plural, loved ones. And she shares in common with mom the early death of a beloved spouse. But mom wouldn’t know any of this. Given her current dementia realities, even if I had pointed out “Friend” ten minutes earlier and told mom these things, it would be highly unlikely that mom would be able to recall them. And yet… mom’s words were like a whisper from the Divine, like a message delivered by the Spirit to encourage “Friend” or to encourage me…  

We will never know why those words came from mom’s lips during the Passing of the Peace today. But “why” doesn’t matter. The fact is that mom passed peace to us. She was the one offering the gift and we received it. People with dementia are not just objects and are not just recipients. Our neighbors with dementia are not “gone” or “absent.” Yes, they are changed by the effects of the disease, but they are still human beings, children of God. They still have gifts to share… a tune they hum, words they speak, a simple smile or the warmth of their hand touching yours.  

Thanks, mom. You made our day much better than it had been. And thank you, “Friend” for responding so warmly to mom’s comment, helping us to the car after the service, and sharing your friendship in so many ways.   

Maybe others need to hear it too. Friends, “Don’t worry. It’s gonna get better.”  

The following text was written for the annual Lenten Devotional booklet created by the Chaplain’s Office at Cedarfield in Richmond, VA.

When I saw that this year’s Lenten Devotional theme was “healing,” I struggled with what to write about.  Should I explore the theme of healing in relation to disease and illness?  My family has a significant genetic disease.  My grandmother suffered from it.  Then my uncle died young from it, and my mother continues to struggle with it.  I’ve had genetic testing and know that I, too, will have this disease.   Healing would be most welcome in our family.  But I also know that countless people around the globe suffer from physical illnesses, from poverty, from war, from abuse… and every wish and prayer for healing is not granted.   

So… what should I write about?  What do I think of when I hear the word “healing”?  I thought about it for more than a week, and still I had no idea what to write about.  So as I sat down at my computer striving to meet the deadline to submit something, I decided to do a web search for the word HEALING to see what popped up.  Merriam-Webster was one of the first websites.  And the leading line was “149 Synonyms for HEALING.”   

What if I had asked you how many synonyms you could think of for the word HEALING?  I thought of “treatment,” “miracle,” “wholeness,” and 3 or 4 more words.  But there are 149 synonyms for HEALING in the thesaurus.  Wow!  149 synonyms for HEALING.  Maybe my understanding of HEALING is too small, too limited!   Maybe my family’s disease is a reality we have to live with in this world, but there are so many other ways to recognize and embrace healing and hope.  Maybe God gifts to me a special perspective or wisdom or sensitivity because of the family illness.  Maybe God brings to life things in me that couldn’t otherwise blossom and grow.  Maybe healing is more than the absence of a disease but rather the abundant life that fills me and allows me hope, joy, and love despite the details of a medical condition.   

As I move through this Lenten season, I now have a whole new way of looking at HEALING.  Synonyms like “renewing,” “revival,” “fortifying,” “restoring” have peaked my curiosity and awakened me to look at ways that God might be healing me even as I carry this gene.  May we all discover God’s HEALING in our lives, in the many, many (more than 149, no doubt!) ways that God shares it with us.  

There’s a phrase I learned at some point in seminary: “Ministry of Presence.” Folks might define it differently, but basically, my understanding is that simply being physically present with someone can be a genuine spiritual gift. Chaplains often use this phrase when they sit with a family who is experiencing a traumatic or sudden, unexpected death of a loved one. There are no words that can make it better, but being beside them as they process and grieve their tragic loss can be a significant gift and strength. Others use the phrase too. A youth minister who chooses to sit next to the shy, awkward teen rather than the cool kid is practicing a ministry of presence. The class member who sits next to the visitors in a small group gathering rather than beside their friends of 30 years is practicing ministry of presence.  

I sometimes think of my visits to mom’s assisted living facility as a ministry of presence. It isn’t what I say, what I do, what token or gift that I bring that likely makes the most difference. Instead, simply my being there can change her day, can touch her emotions, can warm her heart. I confess I am not able to visit as often as I wish I could, but I almost always enjoy my time with her.  

Today I sat beside her in the communal living room with several of other residents all sitting comfortably in a circle. One woman was so comfortable, she was drifting in and out of sleep. Another resident had two family members beside her, feeding her spoonfuls of soft-serve ice cream they had brought with them. The woman closest to mom was on a small sofa with a baby doll in her lap and a stuffed animal puppy beside her. With genuine care, she would bounce the baby doll on her lap, then hug it tightly to her chest. She would hold it at arms length and gaze into its face, then she might kiss its forehead. Occasionally, she paused to stroke the puppy beside her. Her expressions of love were so abundant, I realize I couldn’t take my eyes off of her.  

Mom and I kept chatting as I sat there but at some point, I locked eyes with the woman beside her. I said something like “You are so kind and loving” to her. There was a moment of silence, and then she replied, “I am here.” Her gaze returned to the baby doll and her loving actions continued. That was all that she said. “I am here.”  

I’ve always thought of “ministry of presence” as something a skilled leader offers to someone in need. Instead, today… this woman with advanced dementia taught me a lesson. I was enthralled with her actions, her kindnesss, her sweet loving spirit. But she is more than just her actions. She is more than memory. She is more than anything she can say or do. The fact that she exists is a gift to the world. Her presence, even in her days of dementia, is a gift. Some might assume she only had a “ministry of presence” in years before dementia when she achieved or fulfilled responsibilities or excelled in other ways. Others might realize that as long as she can love that baby doll and stuffed animal, she can inspire others. But she led me deeper. Even if she were bedridden and speechless and generally unresponsive… she would still be a gift. She is there… the same “her” who has always been. Her abilities may change, but her very existence is a gift to the world as long as she draws breath.  

“I am here.” What if we start to notice the stranger in the aisle in the grocery store and say to ourself, “She is here”? What if we notice the car that zooms past us on the highway and pause to pray and give thanks for that person and pray for their safety as they rush to their destination? What if we take movie stars and politicians and professional athletes off of pedestals and simply give thanks that they exist, that they are human beings created in the image of God receiving the gift of life. “I am here,” they all say to us… celebrities and strangers, the rich and the poor, the popular and the outcast.  

“Ministry of Presence” is an important call for those who serve others… but today mom’s neighbor taught me that it is also a gift embodied by every single human being. I am here. You are here. Forgive me when I fail to notice, I ask of you. Because you matter. Everyone is of value. It may sound simple, but if we can’t affirm that and live like we believe it, then why argue about more complicated questions of faith and belief?

I am here. You are here. Thanks be to God.

Four and a half years ago, I decided to start a blog. I wanted to write and record my thoughts & feelings as I move through the years from a “you are going to have dementia” state to a “you have dementia” state. It’s going to happen, we know that. I cannot stop it or change it, but I don’t have to be a passive victim. I can write and record what I’m thinking and feeling.  I can give voice to pain and fear but I can also share joys and insights. I chose the name “Thoughts from Below” for the blog. It was a way of confessing that no matter how great or how “normal” things seem for me, the knowledge that dementia is coming, is creeping slowly into my reality, is always there. The worry, the fear, the dread may be ever so slightly removed from my consciousness, but it hovers just below the surface of all that I say and do.  

I was reminded of this last week when I travelled home to Statesboro, Georgia for a quick trip to visit with friends. The purpose of my trip was to spend time with a friend in Statesboro and another friend down the road on St. Simon’s Island. There were no special plans, no tickets to events, just a chance to catch up and spend time together. But I found myself feeling especially sentimental throughout the entire trip. I don’t know why. I have some ideas, though: 

• This is the only time in a VERY long time that I have traveled home alone. Typically, I would have my kids with me and focus much of my time and energy on showing them special places, telling them old stories, helping connect my children to my story and setting. I love visits like this, but I was reflecting that when I bring my children along, there are many ways I’m focused on their experience rather than allowing myself to focus on my own feelings. Or, the time I brought mom with me, I focused mostly on her needs, what might be meaningful to her to see or experience. This trip… there was no one else to consider, to share with, to distract me. It was just me and my memories, my thoughts, my feelings. So… I listened to myself and I thought about things that I had time and space to consider. And I remembered and felt many things deeply. Wow. How often am I focused on other people or other tasks or other responsibilities and not fully in touch with my deepest thoughts and feelings? That’s an important question for me to ponder. Perhaps it’s something we all should ponder, how distracted are we and how often are we truly aware of our thoughts and feelings? 
• For years, conversation with mom has focused on one thing for the most part: Cairo, Georgia. Mom names her close childhood friends, tells me where they live and how to get to their houses from her house. She recalls a list of names of relatives, townspeople, church folks. I appreciate hearing what she shares (though it’s often predictable and repetitive), but I’m not all that familiar with the people or places we talk about. Still… I sense how important her early years are to her, how aware she is that the people and places and events and traditions of Cairo, Georgia are an essential part of who she is. So… being in Statesboro caused me to reflect: What stories will I repeat and re-tell over and over again? What facts are most memorable to me? Which people were central to my life when I was young? Throughout my visit, rather than just seeing places and people, I constantly asked myself, “Is THIS what I am going to remember? Is THIS whom I will talk about? Is THIS what is most important to me?” I honestly don’t know how my brain will work and if “importance” or “value” is what causes things to be remembered 20 years from now or if it’s just neurons and brain connections that are somewhat random. I don’t know… but I wondered about it constantly. 
• And… just the opposite. As I pondered what I WOULD recall in the future, I wondered and worried about what I would forget. I saw places and people who are dear to me and realized that someday I may honestly not know who they are or what my connection to a place or event or experience was. In my mind, my reality, it will be gone. It won’t matter to me. It won’t comfort or inspire me or warm my heart. I will listen with the blank polite stare that has grown so familiar for me to see in mom and in others too. This awareness, this fear, this worry caused me to look at everything and cherish it in a way that I haven’t done in the past. I’ve always loved going home, but I’ve never wondered and worried if what I’m treasuring is going to be lost to me in the near future.  
• Most every visit to Statesboro, I drive past the dental office dad shared with Dr. Thompson, then past the office dad built in the 1980s. Both places are filled with memories. I drive by the house where we lived when I was age 3 until I was about 7. Then, I go out into the country and drive past the home my parents built around 1979-80. Both homes and neighborhoods are filled with memories. In the past, I have always just driven past… slowly so that I can look and see and remember and “feel” present. But this time, I did something unexpected, I stopped and introduced myself. First, I stopped at our neighbor’s (the Hunnicutt’s) home. They were the family who had lived in the area for years and years. We were the newcomers in the late 1970s and they welcomed us. Mr. Hunnicutt died when I still lived at home and Mrs. Hunnicutt died about 15 years ago, I think. At that time their daughter was living in the house. Would she still be there? How would I know? I don’t have any contact information for her. Why don’t I just stop and knock? I was so nervous, so afraid that a total stranger would answer the door and think I was creepy or crazy. It turns out that the one who opened the door wasn’t a total stranger, but at first I didn’t recognize her because it had been so very long since we had seen one another. “Um, hello,” I stuttered. “My name is Kendra Grimes…” and she threw her arms around me and pulled me indoors, which was the warm, wonderful beginning of hours of conversation and catching up. I had been terrified and nervous to knock on the door, but within minutes, I felt so at home… so anchored in family and memories and community. Mostly she told me her memories of my parents and I told her my memories of her parents. When it was time to leave, she encouraged me to stop next door. “Just stop and knock, the family there knew your family,” she reminded me. And they are just the third owner of the home/property. They plan to downsize and sell it soon, you should stop while you still can. I assured her that I would, and then my shyness and anxiety took over. There was a line of trees that hid the house, indicating their desire for privacy. There was a sign at the driveway entrance reading, “Beware of dogs.” I drove slowly hoping to catch a glimpse of the house, though I did not intend to stop. But as I crept along, a car came toward me and had to wait on me to pass so that it could turn into the driveway. It was the owner. Whoa. What? If I turned around and pulled in, I wouldn’t be knocking on the door, I would be meeting him in the driveway and introducing myself. I would just meet him and ask if I could take a photo of the front of the house. Yeah, why not? So I pulled in. And as soon as I introduced myself, he welcomed me fully and genuinely. I went inside to meet the rest of his family and they offered for me to look around, even to go upstairs to my childhood bedroom, to see the new rooms they have added. So much was different yet so much was the same. So many memories are rooted within those walls. I was overwhelmed and mostly speechless. Then he took me outside, out the back door. The backyard (including the screened porch, the deck, the pole barn, and all the fruit trees) is probably my favorite part of the property. He pointed to and mentioned the blueberry bushes. Four blueberry bushes were still there. We had about twelve when we sold the house 30 years ago. But four were still there. He commented how they were all different varieties and bloomed at slightly different times. “Yeah, that was intentional,” I remembered. I told him how the very last memory I had with my dad was together spreading netting over those bushes to keep the birds away as the berries were ripening. He said they still produce today. I mentioned that we had grapes, peaches, pears, apples, figs, plums, blueberries, blackberries, strawberries, raspberries, and more. He said many of them were still thriving. And then he commented what a significant impact all of dad’s plants were still having today on the ecosystem of this area. Those you reading this may think it’s small and insignificant, but his statement was a way of affirming to me that my dad’s actions, my dad’s existence more than 30 years ago still matters today… it matters to this man’s family every time they enjoy the fresh blueberries, it matters to bees and butterflies and deer and cardinals. It matters to his grandchildren enjoying the house and yard. And it reminds me that the impact of dad’s life echoes on in many other ways too… through his friendships, his dental care, the music and woodworking he shared, his basketball playing, his volunteer work and mission trips… and so many things I can’t even imagine. When the weight of grief (dad’s death in 1992 at age 44) or the fear of dementia (my reality) tries to pull me into a place where everything is limited and broken, one simple sentence from a man I met less than an hour before reframed everything. Every life, every action, every word has an impact… not only in the moment but it ripples and echoes long beyond what we might think. Whether I remember or forget, whether I have three more “good” years or thirty more… my life matters, every life matters, every life is connected to other lives around it and makes a difference.  

This is by far the longest blog post I’ve written yet. And honestly, it doesn’t cover all of my thoughts and feelings and insights from the brief holiday trip home, but the words of the man living in the home that my parents built were the greatest gift from this entire, wonderful visit home. So I will wrap things up here and leave us all with the image of 40+ year old blueberry bushes growing and blooming and offering fruit that benefits humans and wild animals and insects, then stops producing and growing all winter… then it blooms again the next spring. May all of our lives have impact and beauty and fruit that we can’t imagine, season after season, making a difference to those we know and to creatures we have never even noticed with ripple effects far beyond our imagination and understanding. Every life matters. Your life matters. My life matters. That will never change.  

            In the past few years, I have discovered Mindfulness as a part of my spiritual practice.  It was shocking to realize that for most of my life, even in the midst of prayer, my mind was often racing with tangential thoughts, worries, or distractions.  Learning to be fully present has taken time, and honestly, I cannot yet say that I have mastered the practice.  But even as a beginner, Mindfulness and meditation practices have deepened and enriched my prayer life along with my awareness of who I am and of the world around me. 

            I also believe that growing more mindful and present has enriched visits or calls with mom.  Sadly, COVID realities have greatly limited our in-person visits.  For a while we were able to sit together outdoors on the porch at the assisted living facility where she lives.  We chose the rocking chairs that look out over the field across the street.  The field is home to a new subdivision that is currently being developed.  This gives us a lot to look it:  tall grasses swaying in the wind, construction workers hammering nails, buzzards gliding low enough to see what might be lying beside the road or in the field.  I drive past this scene frequently, but all that I ever notice is a major change like a new home being added or a new road being cleared.  When I sit with mom and we look out across the field, I notice the way the sunlight dances on the grasses, the rhythm of a workman’s hammer, the graceful flight of a bird whose very presence and purpose in the food chain often makes me shiver.  I notice mostly because Mom notices.

            “Look at how that… that plant… that dry… the um…”

“The tall grasses?”

            “Yeah, look at how the tall grasses are dancing!” 

 “They are beautiful.  It’s like they hear music.”

            Mom starts to hum a made up song.

 I laugh with her.

            “That clicking fits our song.”

“It’s a man hammering.  He’s working on that new house just over there.  Do you see it… the one with the blue plastic all around it?

            “Is that an eagle?”

 “I think it’s a buzzard.  But I don’t know for sure.”

            “Don’t you wish you could fly?”

  “That would be so neat!”

            “Look at how the plants bend, the brown grass.  It looks like it’s dancing.”

   “It does.  It’s really pretty.”

            “That bird looks like he’s dancing with it.”

    “He does, he’s a good dancer.”

            “Where am I?  What is this place?”

    “This is home now, mom.  This is home.”

            “Ok, if you say so.  Is that a new house over there?”

     “Yes, it’s a new house being built.”

            “Maybe we should buy it?”

      “Maybe.”

            “Look at that bird, how big it is…”

            Sitting and talking with mom is not the same as listening to a Zen master lead a Mindfulness Meditation on YouTube.  And yet… if my mind tries to wander and focus on my grocery list, on deadlines at work that I need to meet, on my phone vibrating with alerts from Facebook or Gmail or some other app… mom brings me back to the present.

            Sure, sometimes we talk about her childhood in Cairo, Georgia.  Sometimes we remember significant people or events from 20 or 30 years ago.  But mostly, these days we live in the moment. 

            Don’t hear me wrong.  I don’t pretend that living with dementia is the same as a deep and abiding Mindfulness meditation.  It’s not.  Dementia brings many painful losses.  Mindfulness is a choice and a practice chosen by the practitioner, whereas dementia is a medical condition currently without an effective treatment.  Mom and the other folks at the assisted living home where she lives are not peacefully and tranquilly journeying through each day, content with their awareness of the moment.  Sometimes they are afraid, agitated, confused, sad.  And yet… so often it seems that mom, at least with our particular form of dementia at her current stage, is present here and now.  

            When dementia calls my name, I hope my appreciation for Mindfulness will sustain and even fill me with peace and purpose.  Sure, I may forget the facts and information I once knew.  Yes, I will lose cherished personal memories and recollections.  But I hope that there will be a field for me to gaze upon, or the rhythm of a hammer to hear, or the silhouette of a bird soaring in the sky, something for me to notice and to marvel at.

            Simply being is a gift.  Each sight, each sound, each texture… these are gifts while we are yet alive.  If I forget this, please remind me.  Point to the dancing grass and invite me to sway along with it.  Tap to the rhythm of the hammer.  Follow the gentle flight of the bird and imagine riding upon his wings.  I hope you have grasses and hammers and large soaring birds in your days too.  And may they not be background scenery and white noise but a gift that you notice and appreciate.  May we all be present and mindful as we enjoy the gift of life.

When I think about living with advanced dementia, I have always assumed it will be a time of not knowing the answers to questions.  What day is it?  What year is it?  What did you have for breakfast?  “I can’t remember.”   

Long ago, I learned not to ask mom questions like this because it only frustrates her and makes her seem sad and confused.  I try to talk about the present or the deep past.  I try to ask her opinions or her feelings not facts that need to be recalled.   

I have definitely equated dementia with “not knowing the answers.”  Recently, playing a trivia game with co-workers made me chuckle and realize how many questions (especially pop culture) that I already cannot answer.  

But something about the trivia game got me thinking more deeply and brought a new insight:  I think the worst part of dementia will not be “not knowing the answers” but rather “not even knowing the questions to ask.”   

I realize when I’m sitting on the porch talking with mom, the problem isn’t that she doesn’t know what month it is or doesn’t recall what was served for lunch.  Her reality is so blurry that she doesn’t know where she is, how she got her, how long she’s been here, what major events have unfolded (or not.)  She sometimes seems so overwhelmed by uncertainty and confusion that she doesn’t even know how to begin phrasing a question.   

Last week, as we were visiting on the porch, though, she opened a tiny window into what her reality is like.  “How does it work?” she asked.   

We were looking out across the lawn, the road, and into a large field and new subdivision being constructed.  “How does it work?” she asked.  “How does what work?” I replied, thinking perhaps she had a question about the new housing development. 

“This,” she answered without gesturing or pointing or explaining herself in any way. 

I had no idea what she was asking.  I’m not altogether sure that she knew.  At some point her focus settled upon the assisted living facility that she now calls home.  “How does this work?” seemed to be a question about whether she pays daily, weekly, monthly, etc?  Does she need to buy groceries?  Does she have her own room?  I think that was what she was asking.   

And I realized… by the time I helped answer the question, I’m not sure she even remembered what the question was or why it was being asked.   

It was a sobering realization to know that someday I won’t even know what the question is or when to ask it or why it should be asked.   

But then I look at the world we live in and realize most of us don’t know how to ask the right questions, the questions that matter.  If we did, there would be not be so many inequities, so much destruction, so much suffering.   

I start to mourn, to feel sad and hopeless not only for myself but also for humanity.  And then I pause.  I do not yet have dementia.  I will, but I don’t yet.  So why bask in a hopeless, helpless state?  Why not use the time I have to contribute toward health and wholeness, not only for myself but for all of humanity, for all of Creation?  Everyone’s days are numbered.  We are called upon to live them well, to ask hard questions, and then to take action as we learn the answers to the most important questions.   

Remind me of this someday, when I don’t know what questions to ask or what the answers are.  Remind me that we are all called to do what we can to share light where there is darkness, to bring hope where there is injustice, to change systems and open doors.  What I will be able to do 10 or 20 years from now is likely to be quite different than today, but as long as I have breath, I believe I will have purpose.  I won’t be drafting petitions or preaching sermons in years to come, but even if it is as simple as loving God and loving my neighbor, remind me to do so, please.  And I hope you’ll continue asking questions that need to be asked and discovering unexpected and exciting answers.

3.24.21

It’s that time of year… when I haven’t cut the grass for about 5 months and things have started to grow again.  There’s something about this time of the year when nothing’s been cut in a while, and a fresh, wild green-ness is evident all around.

Everything is growing… the grass is growing, the weeds are growing, the stuff that I’m not sure if it’s a “weed” or a “native plant” is growing too.  But I have noticed something new that I can’t “un-notice.”  It’s not about “what” is growing… it’s about “where” it’s growing.

Here is a photo from one of the trees in my yard.  Look at the abundant plants flourishing in its shade.  This is not a photo trick or an intentional planting that thrives in shade.  This is nature on John Street in Ashland, VA.  The grass out in the vast yard survived winter.  It’s alive but just beginning to grow and regain its color.  But the many species in the shade beneath the tree are thriving, even as spring has barely begun. 

What does the tree represent?  At first my mind went to God… with a message to “be sure we little plants should stay rooted in the big tree’s shade.”  But that makes no sense.  God is bigger than one tree.  God cares for all the grass and weeds and native plants and every living thing… whether they are near the trunk, beneath the branches, or far away roasting in the midday sun.  Plus, we don’t choose where we’re planted, right?  Which of us chose the families that birthed and/or raised us?  Our multiple identities?  No… that first analogy is flawed in many ways. 

So what is the wisdom to be discovered in this beautiful image I noticed in my yard? 

Maybe it’s a simple fact:  things thrive when they are nurtured and protected, yet living things come in many forms.  There are times, there are relationships where I’m the tree, working to nurture someone else.  There are times that I am the weed, where some think I don’t belong, but I can still thrive and be beautiful if nurtured by another.  And there are times that I’m the grass far across the yard, nothing special, but still rooted, still gonna grow, still alive. 

I often think of dementia in terms of a progression: First I’m healthy, offering shade to others, then later I will be like a plant in the soil beneath another’s shade.  And even if I find myself in a stage where I’m not able to be so protected or nurtured, if I’m a body in a bed in a large facility with little personal attention, I’ll still be alive, still a part of the landscape. 

But no… that’s not the message either.  I’m sure of it.  Simple analogies are often flawed. You see, Mom has advanced dementia but she’s not merely grass far out in the yard.  She’s still the tree that holds its branches over me.  She still says kind and nurturing things that remind me of her loving intention, even if she can’t carry out her intentions.  She asked me just this week if I could think of a place I’d like to travel and pick a time that works for me, how she’d be happy to pay for it and we could go together.  I remember the many times she arranged wonderful, generous family vacations.  She’s also still being nurtured like the abundant plants beneath the tree.  She recently received an Easter goodie bag from a church friend, a photo book from her sister, a cat calendar, and more.  All these things bring big smiles and great joy to her.  And yes, in some ways she’s a sprig of grass far out in the yard.  She’s growing frail, she doesn’t know where she is… and yet, then she surprises you with something beautiful, with kind words, with a clever joke… beautiful even if limited.  She’s all three… nurturing tree, thriving plant in the shade, and grass far across the yard.

So… we’re all trees offering shade, we’re all plants thriving in the shade of another tree, and we’re all blades of grass far out in the yard.  Avoid the simple analogies, they are too limited.  Life is abundant, we have many roles to play… even our loved ones with dementia… even us when dementia comes for us. We can be the nurturing tree, the thriving shaded plant, and the struggling grass across the yard all at the same time. We can all be beautiful, each in our own ways, fulfilling our many roles, simply being grateful for the gift of life.

As Spring continues to come and the landscape changes, I may forget this image of the shade tree and the yard beyond. But I trust new beauty will come. Sunshine or rain, new sprouts or deep roots… I’ll be looking for analogies, searching for wisdom, and remaining grateful simply to be alive and a part of this magnificent Creation.

On Fridays, I lead a guided meditation/centering prayer type activity at the college where I serve.  Today, I had drafted a reflection where we pondered how our “present self” is rooted in our past and shaped by our future hopes and dreams.  I was very careful in the words and presentation not to overly script what people reflected upon in our shared silence, and yet I was striving to have the group focus on “the good.”  I dislike rosy perfectly painted pictures, but I also recognize that a 15-minute online group meditation is not the place to trigger past traumas and ask people to think about such a thing quickly and then move on.  I think I achieved a decent balance of asking the group to focus on the positive (the events or people in their past which gave them a foundation for the present and then the dreams that they aspire to.)  In all my preparation and overthinking, I scripted the meditation without actually practicing it myself before our online gathering. 

So… today as I led and guided the group, I was also trying to participate as best I could.  Reflecting on the past was a joy.  I’ve recently been watching a 1989 videotape of a church talent show led by our Pittman Park UMC youth group.  Seeing my friends on stage, hearing my own high school voice, watching my dad and I play a piano duet, and seeing so many older adults who were key figures in my childhood have all been inspirational as I’ve watched the talent show.  (I hope to get some clips captured on my phone and uploaded to share soon.)  That old VHS tape made cherishing the past an easy exercise for me today. 

Then we spent time in the present, with intentional breaths and body awareness.  That’s always beneficial.  Then, we moved to consider our future.  I asked everyone to picture and imagine their hopes and their dreams.  But… my mind immediately went to my fears.  Dementia.  Loneliness.  Loss.  Lack of control.  I was able to visit mom in her dementia-care assisted living yesterday for the first time in a long, long time.  So the realities of dementia and how it affects us was front and center in my mind.  While others likely pondered their retirement, travel dreams, grandchildren, and things like that… I worried about finances, plans, the pressures on my children, and the environment I might someday live in.  There is so much I will lose.  But then …

… time was up, and I needed to bring the group back together for us to share the beauty of how our past and our future are gifts to us in the present.  Whoa.  That was a hard conversation to lead.  But others shared some very beautiful comments.  One colleague, a professor, now works in the very same office where he once came to “get help” from his professor when he was a student at R-MC.  Now, it’s where he sits and prepares and reads and inspires and helps his current students.  The very same space where he offers help to others is the space where he once received help.  And do you know what he focused on when he pondered the future?  Not his own pleasure or goals, but the achievements and gifts of his students going on to do great things in the future, how they might help others.  His contribution to their successful futures is his future joy. 

Ah, yeah.  It’s not all about me.  If a successful future is all about my pleasure and my personal goals, then no one with a terminal illness or a degenerative disease can find hope in that future.  But if our hope is in something greater… that (to use Bishop Ken Carder’s words) if we are all a story within God’s greater story, then there are powerful and beautiful chapters ahead even if we have dementia or cancer or anything that affects our bodies and minds.  Our Spirit remains sacred and beautiful.  And… our relationships continue.  And the impact of lives well lived can go in reverberating in those we lived among.  As my colleague was focused on the futures of those he has taught and inspired, so I, too, can choose to focus on the futures of my children, my church friends, my students, and my community members.  Suddenly, the future doesn’t seem so bleak.  In fact, it is full of possibility and beauty.  And I can be a part of that future, because, as I was trying to help others see today, our present is intrinsically connected to our futures, just as our past is connected to our present.  How I live today is interwoven with the fabric of my future.

It happens so often, when I’m asked to lead, I am led.  Thanks, friend and colleague.  Thanks, Holy Spirit.  I’m moved and motivated to live well and to trust the One who holds us in the palm of His hand.  Suddenly, the future is looking bright! 

          My oldest child recently got her driver’s license, which changes so many family dynamics.  Tonight, she and her younger brother stopped by the grocery store together.  She was eager to tell me about it:  “You know how I’ve been wanting blueberries?  Well, I picked up a plastic carton of them.  But… it came open and they all spilled out.  They rolled everywhere!  They went under things and just scattered everywhere.  We were trying hard to pick them all up when an older lady noticed us.  She asked what happened and I explained that I had dropped them and we were trying to clean them up.  The lady walked on, and just a few minutes later, a man that worked there showed up.  She had asked him to help us and he brought a broom.  He helped us clean up much faster, but as we got near the end, he reached out for the package.  I explained that I needed to pay for them since I had dropped them, but he said no that he would toss them and I should get some new ones.  Mom… everyone was so nice, the older lady who got someone to help us and the man who helped us and then said we didn’t have to pay for them even though we dropped them.”

          The ol’ preacher in me is thinking of the older woman who inspired an employee to help as embodying the Holy Spirit.  The employee who helped out and who insisted that my kids didn’t owe anyone anything seems a bit like a Christ figure.  But this blog isn’t intended to be a theological exploration.  No, the focus is about life with dementia.  As Ella described the words and actions of the strangers who helped her tonight, I felt such gratitude for those two individuals.  I don’t know who they are, but they helped her navigate one of her first unchaperoned grocery shopping experiences, an experience that well could have undermined her confidence and independence.  Instead, these two strangers gave her a gift of community and confidence. 

I don’t know when, but someday I’m gonna spill my blueberries.  And they are going to roll everywhere and scatter under things.  It’s a perfect image for how our routines and abilities will change once dementia takes hold.  Sometimes I wonder who will be the people helping me navigate life when the blueberries spill and roll everywhere.  Friends?  Relatives?  Church family?  Neighbors?  Someone I haven’t even met yet?  Ella’s account of these two strangers helping her tonight gives me such hope.  Sure, I need to make plans and all that, but I also need to remember that there are good people out there.  There are strangers who are kind and generous.  I’m gonna spill my blueberries in many places, at many times, most likely.  And I can only pray that I will do so in the company of people like my children met tonight.  And, I pray that I can be like those two people assisting the blueberry-spiller right up until the time that I spill the berries myself.  In fact, I hope that even after I start spilling my berries, I can still be a berry-picker-upper or a broom-finder or at least a friendly encouraging voice along the way. 

Those little plastic containers of blueberries sure do spill easily, and the berries sure can roll a long way.  But we are all in this together.  Thankfully.