cerebral palsy

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.

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.

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.

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.

January 10, 2019 0

The Music Map

WheelchairAccessible-2 Every day I try to get out with Mac if it isn’t too cold, too hot, or raining. We enjoy our walks together. I pray and sing and talk to him. Sometimes we are quiet, or he may express his joy…. or annoyance, as the case may be.

His wordless running commentary on life can sound very much like any other monologue; or shall we call it “Mac’s non-verbal soliloquy?”

I answer him back as if I totally get what he is saying, as I often feel I do. I answer him as I would anyone else, “I feel the same way, Mac,” or “Tell me about it, Mac,” or I act like I disagree, “What?! You’re kidding me!” He enjoys this. Sometimes he laughs.

Mac, besides being mostly unable to speak, is also blind. However he does respond to music, and music is a big part of our day.

Besides the recorded music we listen to, I have little songs I sing him, mostly simple little ditties I have made up over time that he likes and that I use for different parts of our daily routine.

Mac has very little sense of personal choice in his life, of course, since everything must be done for him. We brush his teeth, feed him turn him, dress and change him, move him and wheel him around. He can let us know how he feels, in his own way, and we care about that. But he has far less control than we do over the ordinary events of the day.

Routine helps him understand his life and know where we are in the day and what is going to happen.

18485695_1301995486583605_2533649757113175613_n — Mac

In general we think Mac understands a lot more of what’s happening than people might think, and perhaps even understands things we don’t. (By “we” I mean his family and myself.) However, anything we can do to help him have more control or understanding of his life and circumstances, we want to do.

Since he is so responsive to music, I decided to make him a “map” of his neighborhood with songs.

What I did was simple. Every street has its own song. I made it a simple song, most of them rounds that I taught my kids when they were growing up; such as “Jubilate Deo.” Each has a short, jolly melody and a phrase that is repeated again and again, easily recognizable.

As soon as we turn on to a new street, I sing its’ song.

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If he is enjoying my singing, I sing the song for a while. If he makes the grunting, irritated sounds he makes when he wants quiet, I know to stop. I have informed him of where we are in our walk, and I can quit singing and let him listen to the birds instead.

Other times he crows with recognition and in participation with every song, lifting his chin to the rhythm of the music. He likes when I sing, and I think knowing where we are gives him more freedom to feel like he’s on a walk, rather than just being taken around.

1534982_10204548629103990_407267082687379720_o — photo by Maire Manning-Pauc

The street he lives on actually has two songs. One song is for when we are going away from the house, and one for when we are coming back. That way, especially on days when he is kind of grumpy or he feels our walk has been too long, he knows we are headed back in the right direction and he is more patient.

I see him calm down and quit fussing when I begin the song that means, “We’re on your street and headed back to your house.”

I have thought for a long time that he understands this “music map.” When I have experimented by singing the wrong song, he expresses the displeasure he often does when his routine is disrupted in other ways. This tells me he knows the songs for each street and doesn’t want me messing that up! Even when we take different routes he seems to know and recognize the street we are on and what song I should be singing.

I think that Mac does have a “music map” in his mind now. I think he has learned about his neighborhood more this way.

Mac is often mysterious. I may not be able to understand what he draws from the street-song plan of mine. But he does “get” that each street has its own song and he knows what that song should be.

It’s one more way for us to connect and communicate.

That’s surely something.

And it adds more joy to our day.

May 18, 2017 1

In Honor of World Cerebral Palsy Day

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.

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.