When I used to volunteer for Hospice I would deliver flowers every week or so to an old man who had kidney cancer. He lived way out in the middle of nowhere in a small, very old wooden house with his wife, Priscilla. He was my favorite stop. We used to talk and talk. I prayed with his family, sons and daughters, cousins, brothers and sisters, in the kitchen holding hands. They prayed spontaneous vocal prayer. I was shy so I prayed Come, Holy Spirit but they were delighted and said it was wonderful.
He liked to pray for me about things that came up in my life. He would say he had “pondered” in his heart and reflected on a situation in my life and tell me what he felt he got in prayer about it. He often worried about me being a widow so young, and thought I should marry again. He prayed a “holy Christian man” would come into my life. Years later, this did happen, and I’m sure Mr. J.D. had something to do with it. I was surprised he could worry about anyone else when he was dying. But that’s how he was.
When I came in, he used to tell me how his day was in spiritual terms. He would say, “I been deep in the Lord, deep in the Lord all day today.” Another time, in his last few days, he said, “I’m sorry I just can’t talk about anything else but Jesus Christ anymore.” I said “No need to apologize. That’s what I think about all the time too. “ This was in 2002. I still remember him sometimes and smile. He’s deep in the Lord for sure
The first day of “clinicals” for CNA training (Certified Nurse Aide) my class showed up to the nursing home in our white scrubs at 6am. We would do this for three days in a row. We were to shadow the established CNA’s and sometimes follow our teacher around with the class, observe and also try out our skills we had learned in school.
I changed my first few adult diapers that day, with an acute realization of how embarrassing it must be for a patient to have that done until they were used to it. My teacher observed and made suggestions. I tried to make conversation with the people as I served them. It was awkward and weird and I think my face sweated with nervousness but I suppose that’s normal.
One guy I changed was aware and oriented but nonverbal. He graciously let me change him for practice but apparently I made a big mistake. Later in the day I noticed he glared at me whenever he saw me. I found out later that this was because the next time he had peed after I changed him pee went up out of the top of his diaper and got his shirt all wet. With a male patient you have to make sure – er – that there is a downward course for pee. I found him and told him I was sorry about that but he mean mugged me the rest of the time I was there. Oh well.
Later in the break room we had a chance to chat with the CNA’s that worked in the nursing home. To our complete surprise they urged us not to go through with doing this. “She broke her arm,” they said, nudging one of the group, who said, “My arm’s broke, my hearts’ broke, my backs’ broke. It ain’t worth it. It ain’t worth it.” They explained that they loved the patients, and that they each had at least one they were very close to that among themselves they referred to as their baby. “Of course you love them. You have to love them but when they die, it about kills you. “
It was really too late to turn back and we had done too much work and paid our tuition. All of us stayed on and finished our training.
I met some interesting people. There was a married couple who were able to room together. I remember their room had regular furniture in it and looked really cozy. There was a man who had filled his room with books and loved talking to us. There wasn’t time though. There never is. One caregiver has ten patients. By the time you finish getting everyone up and dressed fed changed and cleaned up in the morning it’s time for lunch. I didn’t like how even if one of them was crying there was no time to talk to them and try to help. Someone else in the next room had a physical need to be met. You had to keep going.
i remember one lady liked to play rap on her radio with the volume all the way up. She sat in her wheel chair with her forehead on the speaker with the music blaring all morning until lunch. Sometimes she would really get her head moving. It was impossible not to smile watching her.
Some of the people there were very tragic, very disabled, helpless and alone. It was hard to see that. I wanted to track their families down and yell at them when I heard they seemed to have no one.
Institutions always feel like timeless, placeless places to me, impersonal and eerie in a sense. There’s a lot going on but seemingly little warmth or connectedness. However if you’re there long enough they start to seem more human. Such was the case at the nursing home. I have heard the denizens of nursing homes described as “limp, faceless people in wheel chairs.” It really offended me. It isn’t true. The first time you see someone wheeled into the lobby who seems listless and unaware maybe it seems scary. Maybe they seem practically dead to some people? Lean into the experience, move toward them and not away and like me maybe you’ll find out there is a person there with a lot more going on than you thought. Maybe they are nonverbal or have trouble holding their head up or they’re babbling but that doesn’t mean they can’t receive or even express love. In fact a lot of them had such a need to love that the staff gave them baby dolls to hold. I saw several people carrying baby dolls.
A lady stopped me in the hall and told me how tired she was. “Please I’m so tired. Can you find me a bed?” I didn’t know where her room was and nobody around me knew. So I led her to a vacant room and tucked her into bed. She thanked me. “I worked so hard today,” she said. I said, “I know. You rest now.” I thought to myself that she had probably worked hard all of her life.
One day at lunch I was told to go and hand feed the people at a certain table if they needed it. I sat next to one lady who seemed pretty out of it. I greeted her but I couldn’t get her attention. So I scooped up some food in a spoon and held it up to her mouth. She looked at me and then grabbed a spoon, scooped up some food, and held it up to my mouth. I laughed. “Well you showd ME,” I told her. Apparently she could eat on her own if she wanted to.
I met a saintly man during that few days who became a friend. His name was Jim. I’ve written about him before.
I decided during those days that I was not going to work in a nursing home. The pay was only a couple dollars more an hour than minimum wage. I wanted the opportunity to spend more time with people I helped. I also like a less rushed kind of day. However, I would go back many times to that nursing home. I took my final exam there. But I also spontaneously went over there to visit because it made me happy. if I was in a sad mood I would stop by and hang out in the lobby and watch a checker game. Or just hug people. Or go pray a rosary and have some coffee with my friend Jim. Going there always made my day.
I have been rather dysfunctional lately. I go to work (I still have one of my jobs) and I come home, do the minimum such as take care of my chickens cats and dogs. Then I lay in my bed and stare at the ceiling. My heart hurts. I feel like I am dying. It’s grief of course, for Zane, who died suddenly and unexpectedly August 22 of this year.
At the same time I have lost my job. I took care of Zane for about four years. I also take care of Mac, another special needs young man.
So I have lost my main job, my job with Zane, which is a crisis in itself. It’s hard to make decisions when you’re grieving and it’s not the best time to do it. However, I don’t have time to do this any other way.
I really love working with special needs young people. I seem to have a knack especially with those who are nonverbal. It is a calling I believe, to do this work. It’s a work that is love. It means a lot to me.
I interviewed with a new family. It went very well and they would love me to come work for them. I liked them too. I said I would let them know in a day or two. Then I cried in the car and had to go over and hug Zane’s mom. We sat on the couch and talked for a while about Zane, about things. Her loss is so great I had to stop typing for a few seconds just now thinking of it. I feel guilty talking about my own grief but I can’t help it.
When my mom got restless or had a problem she needed to think about, she re-arranged the furniture and cleaned madly. Sometimes she pulled up carpet or made new curtains and painted the living room to match. I’m not good at sewing. I don’t have money for paint. So I stuck with re-arranging the furniture and cleaning madly.
I talked to my friend Shawna who somehow manages to give me clarity when I need it. I continued to clean madly. My dogs were a little concerned.
I thought about how I am worried about the pay for a prospective new job which is far less than I made at my last. I wondered how I would pay the mortgage now. I finally got a house and I am not giving it up. I was thinking about what to do about that.
However the main issue is grief. It’s hard for me to think of replacing Zane and trying to love someone new already. I reflect that I have never failed to love anyone I have taken care of. In the nursing home where I did my clinicals there is no way to really get to know the people you care for. You take care of their immediate physical needs and even if they’re crying or something you have ten other patients you have to get to who need to be changed or whatever. Even then I always cared for each one in a loving way as best I could. That’s just how I do it. I can do this.
I have a daughter in college. I will do whatever I can to make sure she gets as far with her education as she wants to. She is busy applying for master’s programs lately. No matter what she is going. My other daughter has been going through hell this summer. It’s pretty unimaginable the way she is holding it together. However she needs me. Sometimes she needs my help. I’m going to be here ready.
If there is anything in my life I have learned to do it’s grieve and fight for my family at the same time.
I can work out the pay part somehow but I prayed about my next person to take care of. I think this could be the one I asked for or was led to. . I think I will try it and do my best.
The dogs needn’t worry. I think I am through cleaning for now.
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.
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.
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.
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
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.”
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.
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.
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.
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.
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, 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.
“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.
“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 getting caught in the 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.
Bethany Hang Out 