Search

Bethany Hang Out

Christian contemplative life and devotion

Tag

care giving

My guru

His mother calls him “Pete,” (for “Sweetie Petey.) His dad calls him “Macaroo.” Meet Mac. I know he didn’t say anything  you recognize as “How do you do?” But he knows you’re here, and that you are a new person in the room. I wonder what he thinks?

I like to tell him he’s my guru. He is forever in half lotus position, after all. His legs are pretty much stuck that way. However, nearly every moment with Mac is a Zen moment. So it makes sense that he sits like a Master.

His  eyes can be disconcerting at first. We are used to eye contact from others, and Mac’s eyes tend to be unruly, rolling wherever they want to, unseeing. But once you get used to his eye movements you will find  enchanting blue eyes. There is something wise about eyes that do not see. I think it is because eyes like that imply an inner vision. Mac is not going to give you eye contact. But he seems to give soul contact. It’s one of his mysteries.

When I turn Mac over in the morning, I usually ask him how he slept and whether he had any interesting dreams. He talks to me, too, in “happy Mac sounds,” and I answer, “Really? You don’t say! Oh, not THAT!”

As I get him ready for the day  he cooperates as best he can. Or not. (He has his faults like anyone, of course.)

I pull him into his chair from his bed with ease now. I used to not be as good at it, to say the least. We did some unintended yoga  now and then. Mac had to put up with me.  He looked pretty worried at times.

grayscale photo of wheelchair
Photo by Patrick De Boeck on Pexels.com

Trust is a very important part of Mac’s life every moment. It has to be. I’m so glad he trusts me now. His mother says  Mac is “literally an example of blind faith.” When you watch Mac, you can see how true that is. In even the routine events of the day he has to practice faith, and patience. He more often than not shows great sweetness, even sacrifice, forbearance, generosity and love.

For a goofy example, he will wear hats and glasses just for me. His mother says I am the only person he does that for. I realized he does it to please and amuse me even though he doesn’t like it at all. He will even laugh with me the whole time, just because I am happy. I came to see that these virtues of Mac’s are choices he makes. He has been pressed hard to make these choices by necessity every day, but the choice to be virtuous and loving has been his.

Eating is the hardest thing he does all day. It takes all his concentration. It’s hard for him to get his mouth and tongue to do what he wants them to do. He gives it his best most of the time. He has apparently decided, however, that the food had better be worth the trouble. He makes sure I have a chance to practice patience too, when I feed him.“OK, Mac, PILL!” He knows what that means and reluctantly opens his mouth for me.

At first I had a hard time getting his pills down him. I kept putting pills in the wrong place on his tongue, spilling water so it went up his nose, and generally making the process more difficult than necessary. This was hard on both of us. He was mad at me sometimes. But after a little while he would forgive me and lean his head on me to show it.

The day  the pills went down without a hitch, he crowed with joy. He leaned his head against my arm and nuzzled me–the Mac hug. I felt like the best kid in class. I laughed and he laughed too.

19417394_10213919148237289_508443749469786156_o

I speak English, Mac speaks Mac, and we both speak music. When I turn him over on his stomach and put on some music he likes, he arches up, raising and swinging his torso, lifting up against the outward curve of his “C” shaped back, pushing with his elbow a bit to stretch higher. He reminds me of a dolphin leaping from the water. He may begin whooping and howling. I like to howl with him. He thinks that is funny and laughs contagiously. Sometimes we raise quite a ruckus and the dogs come running in, barking.  His  “Macnastics”  dance to his favorite song (on repeat) in the morning is an uncontainable Alleluia– joy concentrate.

A big part of our day is listening to music.  He pays close attention, usually, to any new music I play for him. If he loves it he will sing with it, which might sound a little more like screaming to the uninitiated. If you knew Mac though, you would be able to tell that it is beautiful and soulful.

white dandelion under blue sky and white cloud
Photo by Pixabay on Pexels.com

Mac loves the wind. He especially loves a sudden gust that rushes against his face. He will sing to a breeze like that. He lunges in his chair with happiness when the wind brings leaves scuttling across the driveway. If he is like me, and maybe he is, he likes the way the wind seems to fill his soul and lift his spirit. Or his happiness with the wind could be something completely unique to the Mac-iverse that we will never know.

Sometimes on our walks I gather rose petals and sprinkle them over his head. He can’t see the petals or even what I am doing but he smiles gently, as if he appreciates the love.

In the afternoon I like to do my meditation with Mac’s feet in my hands. He seems to know to be silent with me then, unless he needs something or is uncomfortable. Then he isn’t silent.

Sitting quietly with Mac, his funky little feet warm in my hands, the sun spilling through the windows, the dogs sleeping nearby, is rather heavenly.

close up of a defocused
Photo by Pixabay on Pexels.com

When his family comes home Mac lights up as if all the love in the world is right here at his house.  It does seem that way, they are so crazy about him, too.  I feel privileged to be let in on the love they have going there.

What is it like to be Mac? How much does he “understand” in the way we define it?  Mac does not “do” much by the world’s standards. But he participates in and lives life. He loves and is loved. His soul has beauty, purpose, and wisdom of its own.

18485695_1301995486583605_2533649757113175613_n

There are so many things  Mac can’t do but I hardly ever think about that. I’m fascinated by what he can do, what he might be doing, and how much he shows me what it is to live, to be human, to be a child of God.

He teaches me things I thought I knew.

Mac is a shining light of every truth he lives.

I have  finally received the true initiation from my 23-year old guru, his highest honor, the Mac kiss. I’m going to smile all day. You would too. I think he just taught me all I need to know.

Mac really is my guru.  His teaching is simple but profound: Everybody has a soul, that you can connect with by love. Everyone has love within them. Everyone has a mission from God and is loved, loved, loved by God. We all “know” this. But to see this, really see it, is to be in Heaven already. And in Heaven nobody cares if you drool a little. That’s how it should be.

The Feet of the Master

feet of the master 🙂

 

  • I wrote this article in 2014, with the permission of Mac’s parents, when I was in my first year of working with Mac. I wanted to reflect on my work with him again as my official job with him is ending. We’re not worried. We know we will always be friends.

The day’s modest ornaments: simple routines that re-center

15039609_10211644917782949_4725375496342074872_o

I have a cup of coffee, and I am listening to jazz (Alice Coltrane today,) because it is 2 o’clock. That’s what I always do this time of day; jazz and coffee. Somehow this makes me feel more present in the day.

The loose, open-ended routine of stopping the day, at least a little bit, to remind myself I am in it, began when I was an overwhelmed young mother with my first new born. I looked forward to the afternoon jazz show on public radio every day. It helped me touch base, and for the day not to just slip away. It started at 2:06PM. It still does, actually.

My best friend, Andrea, lived on the other side of our duplex, and she liked to make a pot of coffee about 2, because she tended to get sleepy that time of day. So we had the afternoon solace of a cup of coffee, afternoon jazz, and an attempt at a moment of peace together each day, with our babies.

Later 2 o’clock jazz and coffee was a stopping place of peace and re-gathering before I picked the kids up from school. There were various incarnations of the same 2 o’clock routine as my life evolved.

Even through all the tragedy and trauma of these last few difficult years, I have continued to put on some jazz and make a cup of coffee around 2PM, if possible. The duration of time I spend on this, and what else I will do at that time, varies, but generally, I will do at least those two things, and make conscious contact with the day.

What does this do? It gives me a little island in the day to reclaim my peace and priorities.

On a busy, hectic day, it reminds me that I need to slow down.

On one of those difficult, timeless days when my ADD seems worse, or I have that PTSD inertia -anxiety I get, it helps me get a foot on the ground and start over.

For me time can be vague, and the day gets away from me. The simple act of turning on the music and putting on some coffee at that same time of day I always do, is a rung on the ladder back to earth.

As Dorothy Day said, “My strength returns to me with my cup of coffee and a reading of the Psalms.”

15000871_10211663846096145_184676318470266262_o

 

When I am at work caring for Mac, I still make coffee and put on some jazz at 2 in the afternoon. He has developed a taste for jazz now, and if I put on any other type of music that time of day, he looks confused. “Hey, what are you doing?”

The rhythm of the day means a lot to Mac. I think it is how he understands his place in time and in the world in general.

I can learn from his way of keeping track of his life so that it means something to him. Without the predictable and repeated routines of each part of the day, life would feel like an unsure, confusing continuum to him. He feels safe when he understands, at least in a general way, where he is in his day.

We are the same way, though most of us have more physical senses and more personal choices available to us than Mac does.

Routines and traditions help us to be fully in the present moment, and, if they are appreciated, can help us live more deeply, more consciously, and therefore, more prayerfully.

Maybe that’s why God made time for us to live in, even though He doesn’t need it. He doesn’t have any problem being present everywhere at once, but we do. We need time to truly experience life and meaning.

We have to mark time to keep ourselves in the only part of time we can really live in; the present moment.

The present moment is where we are most able to encounter God, because that is where we ourselves really are. God is within us, so we need to be “home,” to be present to our Guest.

During the day, we can get caught up in the past, in the future, and other distractions, worries, and concerns. Our minds are a constant river of thoughts and feelings.

Sometimes the day is a frantic blur. Sometimes it is like a dream we can’t quite remember.

When we occupy time fully by being present in the day, there we will find meaning; we will find God.

15016272_10211663846176147_2297862076050296008_o

I have been thinking about that.

I am not much of a routine person. I tend to prefer a cadenza of a day, leaving plenty of room for inspiration, for people who show up, for the Holy Spirit to blow through, for random acts of goofiness, impulsive kindness, or happy, dreamy uselessness.

However, I understand that touch points in the day can be sacred. They give me a way to put the day back on track, put first things first, and remember what I’m trying to do with my life.

Besides making sure I get certain things done each day that have to be done, routines can be boxes to put presence in.

They can be conscious bridges into the next part of the day, helping me live intentionally for the next few hours.

29110_1460786004092_1330649_n

 

I am trying to aim for small and attainable things to do here and there like modest ornaments for the day I am crafting.

One of these little routines is to turn off any music or stop whatever noise or activity or device is on at noon and pray the Angelus prayer.

I try to get certain things done at work  by then so that I can sit down beside Mac and pray the Angelus at the traditional time of noon, or as close as I can get.

 

Mac likes this, too. He knows when all is tidied up and quiet, and he is made comfortable, that I will come sit and pray with him for a while. Sometimes he likes me to scratch his head while I pray the Angelus, and mid day prayer from the Liturgy of the Hours.

14990910_10211663846136146_7274135260661915985_o
Mac and I hang out

Another thing I have been trying to do: When I get home from work, before I do anything else, is to make time for a mindful sweeping up before I let myself settle down or get obsessed with anything. It’s an easy thing to do, but it makes a big difference in how the rest of the evening goes.

The temptation, when I get home from work, is to  flop down and start reading or messing around on the Internet, or get caught up in listening to the news.

When I succumb to that temptation, it seems I only get more and more tired and unmotivated, and that time is wasted. There goes the evening, before I know it; myself and the world, none the better.

I am more likely to do other good things if I make the transition into the evening by doing a simple, silent routine like sweeping, paying attention to what I am doing, often accompanied by inwardly saying the names of Jesus and Mary prayerfully as I sweep.

Jesus. Maria. Jesus. Maria. Jesus. Maria.

Sometimes I even think there is another pair of playful, encouraging feet dancing with mine as I move across the floor with the broom; sneaky, sandaled, dusty feet behind my bare ones, and a silent voice that playfully says, “1,2,3, 1,2,3,” as if we were waltzing together while I sweep.

It makes me chuckle.

Maybe I’m on the right track.

392683_2611687181266_1082785549_n-1
painting by Bob Chapman

 

 

*If you would like to try praying the Liturgy of the Hours, you can try it for free on Universalis

For more on finding meaning and mindfulness in house work, you might like my post The holiness of house work

 

 

 

In Honor of World Cerebral Palsy Day

14568092_1202865479771169_7270848609560780290_n

In honor of World Cerebral Palsy Day, I want to talk about a great part of my life, Mac, who has C.P., and about what it’s like to spend my days with “his Eminent Lovableness. ”

Mac and I don’t actually “do” much. I mean, not really. We mostly just hang out together. We mostly just “are.”

Fortunately, we are really good at that.

I do change, dress, move, and feed Mac, as needed. I brush his teeth, give him his medicine. I do his laundry, dishes, and other light house work. I accompany him to doctor’s appointments. I push his wheel chair for walks. I guess at what is bothering him when he is annoyed or unhappy in some way. I try to make sure he is always safe, clean, and comfortable.

That’s the stuff I’m supposed to “do.”

Mac does his best to cooperate most of the time. He does his best to communicate his needs and preferences.

I make a little bit of money for this, and my job is very rewarding. Also people often say I am sweet to be doing it. Encouragement is always nice.

The part that is harder to see unless one is with us, is that Mac and I are friends.

1075310_10203433798030087_761468140_o-1

If you ask Mac about me, he will often say one of the few words he is able to make come out right, “Yuck.” He thinks this is funny, and I do too.

However,  “yuck,” doesn’t actually describe our friendship that well.

In normal life a young man in his twenties and a woman in her forties, who were not related, would not hang out all the time. They would probably not find much reason to be in the same place for long.

But here we are, hanging out during one of our favorite times of the day; the late afternoon, when lunch is cleared away, and the sunshine through the window is turning a honeyed gold. Miles Davis is on the radio, the laundry is folded, and my feet are on the foot rest of his wheel chair next to his own. I am writing. He is gazing in the general direction of the window.

This is it.

We both love it.

I look up at him, and he smiles. I don’t know how he knows I looked up, since he can’t see much except possibly shadow and light.

I like to think he knows I am looking at him because we are connected by heart.

13592372_10210401251692074_1280300063845410257_n
“Cells” by Bob Chapman

Mac doesn’t “do” anything, in the way the world defines doing.

What Mac does is be present, love those around him, and deeply enjoy life.

His face lights up when someone he loves is near, when his family comes home, when he hears his brother’s voice over the phone, when he knows he is about to go somewhere with his parents. (OK, also he is very happy when he thinks he is getting away with something, like when  I have forgotten his pills, for instance.)

He can’t hug us since his arms don’t work well enough mechanically to do so. But he leans his head against us and nuzzles us. That is a Mac hug.

11392979_10207249520540765_1899978649075821954_n
“Isn’t she ridiculous?”

He shows love by forgiving us when we make a mistake, like accidentally spilling something on him, or inadvertently pinching him or something.He might be mad for a minute, but he forgives.

He trusts us that we will be there when he comes off the edge of the bed toward his chair in our arms. He knows we will make sure he is safe.

Sometimes he is so happy to be with the ones he loves, he screams with joy.

He listens closely to anything I want to read him, and to music that I play him. He lets me know if he doesn’t like the song. He lets me know how he is feeling.

Sometimes he squeezes my hand when I am sad.

He swings his head up like a crazy periscope when I come in in the morning, especially if I have been gone for a while.

He hangs out with his good friend, Shawn, enjoys the afternoon, and smiles at her.

All these he does because he loves. Love is not always a “doing” kind of thing. It is also a being kind of thing.

Mac takes deep joy in the quotidian routines of living. He loves all the different parts of the day; each ritual of the days’ passing, each interlude of inactivity or quiet.

He shouts with enjoyment when he hears music he loves. He appreciates the people around him. His wild laughter at everyday situations, like being accidentally outside when it starts to rain, are about the joy of living. His various “happy Mac” expressions are enthusiasm about the moment. He expresses his contentment by saying, “Good-good!” These are all expressions of gratitude. Gratitude is about being, too.

In that way, Mac is really busy.

And so am I.

10407498_10153941939755752_8923159948989154324_n

 

 

For more about Mac 🙂

 

 

 

Blog at WordPress.com.

Up ↑