My Way

Preface: if you don’t know what the Camino de Santiago de Compostela is, stop reading this and go watch the movie “The Way”. If that’s too intense prep in order to just read a blog post, then check out wikipedia

I don’t know where to start, but I know I need to write about my Camino.

Let’s start here.

On May 8th, 2017, I started walking; on June 2, 2017 I stopped. The space in between is where life happened. The Camino taught me that. Life happens. Life is always happening. There is no pause button on living. No matter what you do. Life. just. keeps. going.

I walked the Camino with my good friend Meredith. She and I….she and I are as alike as granite and daisies. Somehow though, we became friends. Sometimes our differences make it more difficult for us to understand each other. Other times our differences allow us to accomplish twice as much. Our strengths balance us out. The Camino was a forge for my friendship with Meredith. We went through fire, but we went through it together and we came out the other side with a friendship that has welded us together. I will always be friends with Meredith. I thank the Camino for that. And I thank Meredith, for asking me to go on the Camino with her.

 

I am still in the process of discovering all that the Camino taught me. Writing this is a part of that. It will take some time to process. I take time to process things. The Camino taught me that. Also, it taught me that it is okay to be me. No, that’s not quite right. The Camino taught me that it is wonderful to be me! That there is nothing better or more perfect for me to do than for me to be me! The Camino taught me how to be myself, to be unashamedly myself, to be more myself than anything ever has. Me all the time, with anyone, anywhere. God made me to be me and God only makes good things, so, the more “me” I am, the better of a person I will be. The more “me” I am the more content I will be. The more “me” I am the more I reflect the God in whose image I was made.

So…What does “being me” look like in real life? Well that means I tell dad jokes with no shame, I laugh like a donkey, and I take pictures of beautiful things. It also means I swear more, cry more, and am more open with my emotions. That is how I was made. I am a woman full of deep feelings. When I hold them in, they char my insides; when I let them out, I am a more healthy person. I am the person I was made to be!

Some of the things I discovered about myself along the way happened during my interactions with others. Spontaneous heart to hearts with strangers were common on my Camino. Other times I discovered things about myself in the silent times when I was walking alone. Silence is scary, but I need to have it in my life. Especially the scary silence.  When the silence is scary, I need to confront that scary silence head on. If I don’t, the scary part just gets worse. I have often kept noise (music, podcasts, Netflix) in my life to avoid being alone with the scary thoughts in my head. The thing about scary silence is that…it’s a part of me. If the silence is scary, it’s because there is something in that silence about me that I can’t handle. My Camino taught me to confront that and learn from it. I am stronger and wiser for it.

Along the Camino, being alone was a choice. Most of the time there were other pilgrims around and I was pleasantly surprised by how many of those pilgrims became my friends. Some even became close enough that we call ourselves “Camino Family” I discovered that friends come from the people you happen to walk beside and the people you happen to stop by. Sometimes it seemed as though we had nothing else in common other than that we were walking at the same pace. I struck up a conversation with, Delphin, a man from Leon, Spain who had done 33 Caminos and only spoke Spanish. We had a conversation in my broken Spanish and took this picture:

On the Camino, I met people from Mexico, Australia, China, Korea, Germany, Italy, Portugal, Brazil, Spain, USA, Argentina, France, England, Ireland, Canada, Denmark, and more I’m sure. I met married couples, children, retirees, and college students. All sorts of people all on their own walk. A certain group of these people became close enough to call them “Camino family.” My family was made up of Melina from Argentina, Denise from the USA, Laura from Germany, Rainer from Germany, Ramon from Spain, Jose from Spain, Javi from Spain, and Tania from Canada. My Camino would have not been the same without each and every one of them. Here are photos of my three “Camino Families”:

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My Camino Families taught me a lot about community, about what it means to care for other people, about sticking together, and about accepting help. I have always been a very independent person. Accepting help is hard for me; asking for help is downright terrifying. I could have done the Camino alone. I could have completed the mileage alone; I am capable. However, that’s not what my Camino was supposed to be about. My Camino was about learning the value of accepting help. Accepting help is still scary for me. Now I know, though, accepting help is giving love. Accepting help is allowing another person inside my shell. Good people recognize this and are honored when I let them in.

 Speaking of shells…mine has been rather thick for most of my life. Much of the healing I have done over my life has been to chip away at my shell. Sometimes it grows back. Sometimes it shrinks. The Camino helped get rid of more of mine. My shell is about safety. When you get hurt a lot, you get scared. I have been hurt a lot so that makes me scared. Being in a shell is safe. Being in a shell is lonely. The Camino taught me that the pain of being outside my shell is worth the risk. Yes, I will be hurt. I know that. Hurt is inevitable in this life. On the other hand, I will have much greater joys than I ever could hiding inside where it is safe.

Not all the lessons I learned on the Camino were introspective. Some had more to do with the culture in which I was existing. The Camino is definitely its own culture and then, of course, are the various Spanish cultures. I learned a lot from both. Here are a few lessons:

  • I ate well in Spain. Good cheese, meat, fruit, bread, wine, chocolate…the food was not complicated, but it was delicious. This taught me to work hard and eat well. Don’t deprive yourself of good food. Good food, good real food, brings great pleasure to life.
  • Many people on the Camino had tan lines and scars. I have always been proud of my scars. On the Camino, I realized why. Tan lines and scars are stories of adventures.
  • I had very few belongings on my Camino, just what fit in my backpack. So I was very deliberate about what I brought and how I took care of it and of how I took care of myself. It wasn’t complicated, but it was important to realize. I needed to appreciate the simple things, if things are quality, they need not be fancy to be wonderful.
  • I didn’t learn a ton of Spanish in Spain, but I learned enough to learn this. In Spanish, “esperar” means “to wait” and it also means “to hope”. The Camino taught me that the passage of time never needs to be passive. Waiting is never just waiting; waiting is an act of hope. Waiting is active. Hope makes it so.
  • There were plenty of days where walking felt like a full time job. In a way, it was our job. Meredith and I both loved it, but some days it felt like the kilometers were endless. We never gave up and that is why we made it to Santiago. I realized that you will get there if you keep moving forward. Even if you feel like you are moving slow. Forward is forward. We were always walking forward. Slow or fast each step led us closer to our goal.

I know there is a lot more to my Camino, both internally and externally. While we were walking, we were already making plans about when to come back. While I am writing this, I am already thinking about other ways in which the Camino has affected me and is changing me for the better, even now, and now, and now. My Camino is in my heart; my head is still catching up, and my soul is already there, back in Spain, sandals on, backpack cinched tight, heart facing towards Santiago, face drinking in the sky.

My Camino, this Camino, will never be over, espero.

 

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Three years ago today

 

Three years ago today I drove my dad to the Wake Forest Baptist Medical Center to be admitted for some tests. He had been having strange symptoms for almost two years and the MRI they gave him in the ER a few weeks prior had shown something funny.

Three years ago today I held my dad’s hand while they stuck a needle into his spine. They gave him a local anesthetic so I don’t think he felt much. A resident talked a newer doctor through the lumbar puncture procedure and the directions combined with the pressure of the needle on my dad’s back made me hot and nauseous. I thought about leaving the room so I wouldn’t faint, but I wanted to be strong for my dad. So I didn’t.

Three years ago today I drove the 12 hours back to my home in Michigan.

Two years, 11 months, and 28 days ago my mom called to tell me that they had my moved dad to the ICU. They didn’t know what was wrong except that they knew he couldn’t breathe right on his own. They put a tube down his throat.

Two years, 11 months, and 28 days ago the test results from the lumbar puncture and blood work weren’t back yet and some wouldn’t be back for weeks. They didn’t know what was wrong. They were just trying to keep him breathing.

Two years, 11 months, and 27 days ago was my mom’s birthday. I had flowers delivered to  her in the ICU waiting room.

Two years, 11 months, and 26 days ago I flew from Michigan to North Carolina. When I picked up the rental car at the Greensboro airport I didn’t know that I would be keeping that car for the next month. When I held my dad’s hand in his cubicle nestled between ICU curtains, I didn’t know that I would be sitting next to his hospital bed for the next two months. When I opened my suitcase that night in my parents house, I didn’t know I would be living out of it for the next three months.

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Holding dad’s hand while he was in and out of consciousness. March 21, 2014

Two years, 11 months, and 22 days ago they took dad out of the ICU. I don’t know if they thought he was better enough or if they just needed the bed but that night was one of the worst of my life.  Every night he was in the hospital and not in the ICU was terrifying. In the ICU there was always someone nearby and he had monitors on him for his breathing and heart rate. In the regular room, he was all alone. And we were right to be scared. I spent many sleepless nights in the reclining chair next to dad’s bed. One night I could hear him breathing too fast and being restless in the bed. Hyperventilating was what usually sent him back to the ICU so I went to get the nurse. In the minute that I was in the hall, he had somehow yanked the feeding tube out of his nose. It lay there dripping stomach secretions and feeding tube formula on the floor.

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Sunrise from dad’s hospital room. March 31, 2014

Two years, 11 months, and 25 days ago they put him right back in the ICU. He ended up going back in there three more times. He was intubated two more times. They gave him CPR once.

Two years, 11 months, and 21 days ago he forced his breathing tube out with his tongue. He was often restrained with soft wrist restraints during this time and he hated being intubated so much that he had used his tongue to wiggle it out.

Two years, 11 months, and 20 days ago dad went for his first surgery. It was a brain biopsy. Mom and I sat in the waiting room for hours terrified but hopeful. The neurologists told us that the pathologists could look at the samples right there as they took them out of dad’s brain. Then they might find a cause and, with a cause, could come a solution. They looked at them. The samples were inconclusive. Further tests were inconclusive. There were never any conclusive results from any test to diagnose dad’s illness.

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Our reflection in the waiting room window during dad’s brain biopsy. April 8, 2014

Two years, 11 months, and 13 days ago a neurological attending and all her students took us into a room with comfy chairs (by hospital standards) and lots of boxes of Kleenex. She said it was time we considered palliative care. I didn’t even know what that meant. She meant that she thought dad was dying and we should talk to the “they’re dying let’s keep them comfy while they go” people (aka palliative care). We did. Sitting in the waiting room. In a hallway. The guy said that we could choose to stop feeding dad if we wanted. We said no. We believe in giving people food. Even if they are dying.

Two years, 11 months, and 9 days ago They gave him a tracheostomy to make it easier to help him breathe and a feeding tube to get him nutrition. That surgery was the most stressful of all. It wasn’t the surgery. It was the period right before the surgery. Dad was hyperventilating again. His brain told him he needed more oxygen when he really didn’t and the lactic acid buildup in his cerebrospinal fluid made him out of his mind restless. The only thing I found that seemed to help calm him was praying the rosary out loud. I prayed countless rosaries in those two months. I prayed until I was beyond hoarse. There was nothing else I could do. I stood next to his bed for at least an hour in the surgical prep room. All the other patients moved on to surgery. We were alone in a room once filled with rows of hospital beds. Dad’s surgery room wasn’t ready. We had to wait. The nurses stood in a corner and waited too. Dad said his chest hurt so they hooked up an EKG. It was okay but now his hyperventilation had gotten so bad that he wasn’t well enough for surgery. Yet they couldn’t send us up to the ICU because there were no beds available. I stood there for an interminable time. Mom was at work and I felt so alone. I had to be there. I had to be the strong one for him and all I wanted to do was run out the door and all the way out to the parking deck railing, lean over the edge, and scream and scream and scream….

One of the nurses in the surgery waiting room had on a saint bracelet. (Rare here in the south). I complimented her on it. She told me about her son who is a priest nearby. They found dad an ICU bed. That caring nurse took us to the elevator. When we arrived at the elevators, she told me how refreshing (though rare) it was to see another Catholic here at the hospital. As I got on the elevator and the doors closed, she walked back towards the holding room and shouted out, “Hail Mary! Full of Grace!” and I replied, “The Lord is with thee!”

Mom got to the hospital. I took a walk around the hospital. I went to the bathroom. I cried. A few days later dad had a successful surgery.

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Looking out at the parking deck near the surgical waiting room at Wake Forest Baptist Medical Center.

Two years, 10 months, and 22 days ago I left my job as a youth minister in Michigan and officially moved to North Carolina to take care of my dad.

Two years, 10 months, and 5 days ago they “discharged” dad from the hospital. He was still undiagnosed. He is still undiagnosed. But they had run out of ideas. And the longer patients are in the hospital the worse it is for the hospital’s bottom line. (Aka short term patients earn them more money per night than long term patients like my dad). So they sent him to a nursing home. I spent every night that week in his nursing home room on a cot I brought from home. A few days in to his stay we noticed he was getting symptoms that should have been stymied by his medication. I asked about his medication. They couldn’t find it from their normal pharmacy so they hadn’t been giving it to him. They hadn’t told mom or me or him.  For other people the medication that dad is on is used to stop bedwetting. For my dad it prevents him from a life threatening level of dehydration due to diabetes insipidus. The nurse called 911.

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Dad in his room at Lexington Health Care Center. May 12, 2014

Two years, 9 months, and 26 days ago I drove behind the ambulance to the hospital. When I got there dad was already in the back and they had me wait in the waiting room for a few minutes. When I got back to him, he was alone, still on the backboard, and screaming in agony. At that time, he had a stage three bedsore on his backside. He was lying directly on an open wound on a hard piece of plastic. Alone. I held his hand and talked to him until they came to take the backboard out from underneath him.

Two years, 9 months, and 21 days ago he was discharged from the hospital again. We found a different nursing home for him. After a few nights I felt comfortable with him sleeping there alone. He had a roommate and a call bell. We kept our own charting of all his medication and input and output. When you are 57, I am certain the most depressing place to be stuck is in a nursing home, unable to get yourself out of bed, with a trach in your throat so you can hardly speak.

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Two years, 9 months, and 9 days ago dad was alive to celebrate his 58th birthday.

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Two years, 8 months, and 16 days ago was dad’s first time in a car post hospital. Mom and I drove him to Duke Hospital for a consult with the same neurosurgeon who operated on Ted Kennedy. He had no useful information for dad.

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Driving to Duke to see the neurosurgeon. July 1, 2014

Two years, 8 months, and 3 days ago they told us that dad had to leave the nursing home in three days because his insurance had run out. We had three days to get a bed and a feeding tube pump and a suction machine and a primary care doctor and nursing care and some sort of transportation home for dad. We were also in the process of moving to a new house. Three years and one week ago I had driven down to NC to help my parents move. Dad’s illness had put that on hold. But the old house wasn’t wheelchair accessible so we had to get into the new house somehow. In three days. And we did (in six days). The first piece of furniture in that house was my dad’s hospital bed.

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Arriving at the new house. July 20, 2014

Since dad has been home it has been…Grueling. Terrifying. Frustrating. Depressing. Hopeless.

Today I can’t even put it into words, these past three years. I feel like if I did you would think I need medical help. And I probably do. But I can’t afford it.

Today it is beyond hard to keep my sanity doing what I do day in and day out. I am my father’s full time caregiver and I have two part time jobs to pay the bills. My mom works full time and she takes care of dad on some nights and weekends while I work. We get no disability, social security, or any sort of government assistance. We get no home nursing care from insurance. They say that all dad needs is “custodial care” and”custodial care” is not covered by insurance.

Is it”custodial care” to fill his feeding tube with food? Is it”custodial care” to help him roll over in the middle of the night? Is it”custodial care” to change his diaper? Or brush his teeth? Or give him a bath? Or use the hoyer lift to pick him up out of bed and put him in the recliner?

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Dad in the Hoyer Lift. December 20. 2016

In the past we have gotten nurses and CNAs from a local agency to care for my dad for a few days. They charged us $700 a day. Dear insurance company, is it “custodial care” when a 30 year old daughter must put her life on hold to move home and care for her father?

When you do these things for your dad, who is not even 60 years old yet, your outlook on life changes. Many things change. Many change for the worst.

But some change for the better.

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I know how strong I am now. I know what I can handle and what I can handle is a shit ton. Sometimes literally.

I know I can be there in a crisis. I know I can make good decisions under pressure. I know I can handle gore and all sorts of bodily fluids. I know I can juggle. A lot. And get by on little sleep.

I know that God is real and he is holding me so tight right now as I write this and cry. I know I can go through hell and I will still believe in him and he will still believe in me.
I know that I am worth gold. That I am precious and beloved in his eyes. Even when I feel alone and unloved and unappreciated. He loved me first and he loves me best of all.

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Carved into the sidewalk outside Wake Forest Baptist Medical Center.

Most times, when I talk at length with someone about what I do for my dad and what he has been through, they say “Wow! I could never do that.” I don’t tell them this at the time, but I am pretty certain they are dead wrong about knowing what they could handle. I never intended to quit my job and spend three years devoting my life to caring for my dad. I never considered myself a daddy’s girl and I hadn’t even lived in the same state as my parents for a decade. Becoming dad’s caregiver happened so slowly that I didn’t even see it coming.

I like to compare it to a frog in a pot of water. Have you heard about this? When one cooks a frog, one plops it into a pot of cold water. The frog is content and so it stays there. The cook turns on the heat but the frog doesn’t notice the slow rise temperature until it is too late and he is cooked.

I am a cooked frog. I never saw it coming. One day I was driving dad to the hospital and then suddenly it is today, three years later and I am emptying his urinals, changing the dressing around his peg tube, and taking him in the wheelchair van to his diagnostic neurology appointment.

I didn’t see it coming, but here I am, just trying to keep up, and praying desperately for a better tomorrow. It’s three years later. It’s not what I expected. But my dad is alive. My mom is alive. And I am too. So….that has to count for something.

-Veronica

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WWMTD? Politics, Power, and Mother Teresa

cropped-p1070609.jpgI am not one to get into politics, especially not online, but I find this quote to be vital for us right now in America, especially the last line.

“I used to pray that God would feed the hungry, or do this or that, but now I pray that he will guide me to do whatever I’m supposed to do, what I can do. I used to pray for answers, but now I’m praying for strength. I used to believe that prayer changes things, but now I know that prayer changes us and we change things.”

-Mother Teresa

Prayer changes us and we change things. WE change things. If you don’t like how the world is, if you don’t like how our country is run, CHANGE IT! Do something! You have the power!

I tell that to my dad all the time. He is profoundly disabled and I take care of him. Often he gets frustrated over the things that used to be easy to do, but are now hard for him to do. I tell him, “You are capable! You are able! You have power!”

We all have power. It’s a matter of use and choice really. Do I choose to use my power or do I choose to complain about the state of the world?

And, if you are a Christian, of course what you do is shaped by your prayer life. But it rings true for all of us, what Mother Teresa said: “We change things.”

We choose to get up in the morning, to smile at our families even before coffee, to leave the house and be kind in traffic, to keep our mouths shut when we want to complain about our bosses, to give a granola bar to the homeless man on the corner. We choose our careers, our small actions, our voting habits. All of this is in our hands.

Prayer isn’t a magic solution to our problems. Prayer is how we discover which problems we have been given the power to solve.

How will you change things today? How will you change things tomorrow morning? How will you change things in the November election?

You have the power. How will you use it?

Presence

I haven’t written on here in some time and I am not 100% sure why I am writing on here now, but here it goes…

It has been a year, well I guess every year is…a year. There aren’t many other options. I have a lot to say, but rarely do I have something to say and the time or initiative to put it on here.

Today I have some of each, but not enough of both to write much. I did find this poem, though. I wrote it back in October and it applies quite well to my life right now. So here it is:

Presence

I will take each day
one page at a time
one line at a time
one word at a time

I will not let the next line
of dialogue
usurp this line of dialogue

What is to come
will come
what is now is what I
will know

now

and that is all
for now
One line at a time.

It’s okay to be honest

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So I haven’t written on here in a while. Mostly because it’s hard to give words to my life right now, especially words for you to read.

I live a hard hard life right now. And saying that on paper sounds so incredibly prideful/selfish/braggish. I should be focusing on blessings only, right? That’s what a good Christian should do. I should be saying things like, how grateful I am that my dad is living still, that I have a full time job, that I am healthy. I should be grateful for all these things. And I am.

That does not make life any less hard. Nor does it make me prideful to admit that.

It took some advice from an old friend (and seeing the movie Inside Out) to help me realize that being honest with this pain is okay.

It’s okay for me to say that my life is hard right now. That some things about my life have always been very hard. It’s okay to say that sometimes I feel like I won’t ever see the end of this tunnel, that I feel trapped, that I feel tired, that some mornings the bags beneath my eyes are so black they look like bruises.

It’s okay to say that.

I am tired. I feel behind at life in so many ways. I feel trapped in an impossible situation with too many tough things to balance. I have a challenging and engrossing job and I have just moved to a new city, again, and my dad is disabled and needs a ton of help. And I feel obligated to help him. I can’t leave my mom to fend for herself. Yet it is so hard to be a grown adult who has moved back home and in with her parents. The lack of privacy, the working together on household things, these are all things I left behind when I graduated high school. And here I am more than a decade later once again making small talk with my mom each day in the kitchen after work and helping my dad brush his teeth. It’s all a little surreal. It’s easy to get overwhelmed, frustrated, sad, lonely, and feel under-appreciated.

Let me say that I don’t feel like writing these things here changes anything and actually, I don’t want them to. More or less writing them here changes me. It gives me permission to be sad, to be frustrated, and to feel alone in a crowd. Writing down how hard it is to be me right now lets me acknowledge how I feel to myself. It doesn’t change the way things are. But it does let me be honest. And honest is enough. For now.

Art Opens the Hard Part of the Soul

 

SONGS LIKE THIS SUNG LIKE THIS are worthy of the GOD who SAVED US and saves us AGAIN and AGAIN every day!!! NOTHING can convey our SUFFERING, our SADNESS, and our JOY in this life or our ANTICIPATION of the next like GREAT ART!

AAARGH! Great art and innovative art that was religious is one of the reasons why I wish I lived a few hundred years ago. One reason why I am glad I don’t? They didn’t have toilet paper next to the toilet. They had a trough with a sponge in it.

The Officer, The Gas Station, The World Cup, and Cindy* Laughing.

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At the nursing home where my dad stays, there is a man down the hall that I will call the Officer. Today, as I was walking by his room, the Officer was trying to recruit his roommate to enlist. “We need people like you to stand up and fight!” The Officer seemed to not notice that his roommate is over 400 lbs with a trach tube in his throat, and cannot, in fact, stand up.

It’s moments like these that keep me smiling. The Officer doesn’t know, but I have been doing good at finding joy in the little things. And I keep running into more little things to be joyful about.

The Officer is about 80 years old, white hair, always in bright blue polo shirts and trousers, and I see him almost every time I walk down the hall. He is a friendly man, but very purpose-driven. And his purpose is the war. He is firmly entrenched in a delusion that we are in a major worldwide conflict and that the nursing home is some sort of command center. When I pass him in the hall, he looks at me, so I say hello and smile. Usually, he will tell me something like: “They told me to wait here for my orders.” or “Have you seen the man in charge?”

It’s not my place to confront his delusion and doing so wouldn’t help him get better anyway so I play along: “That’s good, wait here for them” or “The man in charge is gone; it’s Saturday.” The staff here play along too. When he comes to the desk and asks if he can speak to the General, the nurse says: “Sorry, I can’t get him. He is busy on the phone with the President.”

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Every time I talk to the Officer, he makes my soul happy. And not because I am looking on with bemusement at his break with reality. Rather, his drive and sincerity, in this place of malaise and slow age make me wonder about his life. What was he a part of when he was in the military that sends him back there so firmly in his old age? What has he seen? What has he done? I respect him so much.

Feeling respect and giving respect can make the difference between an abysmal day and a day worth fighting through. The other night at the gas station I got that unexpected respect. I was going in to prepay for gas with the cashier and all I was trying to do was make it through until I could get home and rest. It had been a very. long. day. I didn’t expect anything but the most cursory courtesy from the cashier, but this is what I got:

Me: $30 on pump 3, regular.
Him: How are you?
Me: Better than yesterday.
Him: Well that’s a step in the right direction!
Me: I guess so.
(As I am walking out the door) Him: Here’s to tomorrow!
Me: Here’s to tomorrow!

He didn’t need to give a damn about me to make that sale, but yet he did. He looked me in the eyes and actually wanted to know how I was. I could tell. And that’s why I didn’t just say “Fine” He genuinely wanted to know how I was doing. It made my day for him to reach out in that little way. To just be sincere to another human.

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It’s amazing how far the little things go. Today we were at Duke Hospital with my dad. Dealing with the stress of getting him there safely and on time could have pushed us past breaking by the time we got to his appointment, but it didn’t because of the strangers who cared. The valet who helped put dad’s wheelchair together, the nursing staff who seemed thrilled to see each person they met, even the people who designed the waiting room. It was big and spacious and had a nutrition area with free snacks and ice. The staff there was truly phenomenal. We were in the outpatient cancer building and everyone, from the receptionist, to the nurse, to the tech doing vitals, to the guy at the info desk, to the random staff members we passed in the hall, Everyone was genuinely happy to see us and genuinely friendly to us.

They treated us like people, like people they would like to know.

And isn’t that what makes people want to be people? To keep going when you are in a room full of industrial fans and it’s raining poo? When people really and truly care about you. When they look you in the eye and acknowledge you. When they ask you a question and drawn into your answer with fascination.

Being known is what makes life worth living.

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Some people are good at knowing people and caring right off the bat, like today at Duke. Sometimes it’s harder. Sometimes it takes time. It has been harder here at the nursing home where my dad has been for over a month. A job working at a nursing home, where staff are underpaid and overworked does not attract world class employees. So, when they are stressed, they show it. And they are always stressed. Furthermore, when they don’t know you, they aren’t very good at sincerely caring about you. And it’s hard to get to know people in a nursing home, especially when you work here.

But now we have been here for more than a month so, they are starting to get to know us and get to know dad. Last night, we had a long long conversation with the nurse, a sincere conversation. And it was good.

And today we watched the US vs Belgium in the World Cup in dad’s room. The TVs here don’t get ESPN so Mom and Dad and I were huddled around my laptop watching it on Univision (the only place that streamed it for free!) When that same nurse came in to give dad his meds, she huddled around the laptop too! It turns out that she played goalkeeper back in the day. Then, the CNA came in, and, she was so excited to see the game that she wrapped her arm around me and squeezed in right next to me to watch too. We were no longer patient and nurse or servant and served. We were together, on the same team, rooting for victory.

And no, I am not talking about soccer anymore.

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Reaching out to another human. Being touched by another human. That is joy. That is what brings me joy. That is what makes life worth living.

Soul touching soul.

There is no one with more soul here at the nursing home than Cindy*. She could be 30; she could be 60; I can’t tell. I do know that whenever I have been near her she has been laughing. And no one has a laugh like Cindy. She laughs when she gets a question right in therapy. She laughs when she does well and is praised. She laughs if she does wrong. She laughs if you say hi to her in the hall. Cindy is made of laughter, never sarcastic or manic laughter. Cindy’s laughter is made of squeals of delight and giggles of glee, pitched high over mounds of love of life. She is just happy, happy all the time. Happy when, Tina* the therapist asks her her name and she says “Coconut” happy when she is working hard to stand up. Life is joy for Cindy and Cindy’s laugh is joy for everyone it touches.

In my dream world, I am some combination of Cindy, the Officer, and that gas station cashier. I reach out to strangers with smiles and sincerity. I am kind. I am happy. I am loving.

Instead, I am a ball of stress and worries. I walk with a stoic face. I avoid “useless” interactions. I tear people down based on what I see with my eyes. I don’t look with my heart. Mostly, I just look at my phone.

I don’t know any magic way to change, except the little way.

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I have found when I appreciate these little things, these little joys, these little interactions, I have more joy to give. And the circle is unbroken. And the joy expands. And the world becomes a little easier to live in.

 

For all of us.

 

 

 

*name changed

22 Things I have learned spending a month in a nursing home (so far)

A few months ago I posted this post about my experiences at Wake Forest Baptist Medical Center, where my dad spent over two months splitting his time between the neurology and ICU departments. Now he is a resident at a long term care facility (aka nursing home) here in Winston-Salem and, being here with him daily, I have observed a few things and learned a few more. Here is my advice to anyone who may find themselves dealing with the “wonderful” world of nursing homes.

  1. When you first come in, just give in and breathe deep, you will get used to the smell faster that way.
  2. Having a roommate in a nursing home is equally as beneficial and annoying as when you had one in college. They help you fit in when you first get there and they will help make sure you get back in bed when you are too weak (or drunk) to do so yourself. However, they will also snore, and smell, and change the channel in the middle of your favorite show.
  3. Don’t use the employee bathroom during business hours because an administrator with a key will probably walk in on you.
  4. Seeing an ambulance here is not a big deal. They pick up and drop people off for transport all the time. If their lights are on, that probably means someone is leaving in a hurry. If the sirens are on when they get here, that is a slightly bigger deal. If you see a nurse running, that is a really big deal.
  5. If you don’t want to wait at least 15 minutes for someone to answer the call button and thirty minutes to get something done, just do it yourself. Unless it’s something they won’t let you do. Like put a needle in your dad’s arm.
  6. If you want attention now, say you have chest pain. The staff really wakes up for that. Trouble breathing can work too, but not as well as chest pain.
  7. Little old ladies are my favorite people here. Especially the sassy one with a twinkle in her eye who wears a bright pink peasant skirt.

    And the African woman who sings and is always saying what she thinks in her delightful accent.

    Oh and the old man who kept asking everyone how to go up to the next level while on the top floor.

  8. Question everything.

    Seriously. Ask lots of questions.

    And keep asking (politely) until every single question has been answered.

  9. Don’t expect apologies from the direct care staff. They don’t understand customer service. That is not in their training. They can get you answers though.
  10. Admins are worse at getting answers, but better at customer service, except they usually come across smarmy.
  11. Therapists get stuff done and seem to genuinely care about how you are doing and how you are being treated.
  12. CNAs are overworked and underpaid. They spend 60% of their time cleaning butts and emptying catheters, 15% of their time dealing with food and getting people comfortable, and 30% of the time delivering messages to the nurse.
  13. Unfortunately, they have no time left to wash their hands.
  14. Most everyone who works here smokes.
  15. Maintenance men are friendly. They are not so good at fixing stuff promptly.
  16. Little things make a big difference. Like the swinging bench chair in the shade out front or this sign out back:10330461_947748781893_3195027809619119562_n
  17. The ice machine is downstairs.
  18. Keep track of anything that happens that is new or different. You need to have it all in one place. The staff are too busy with too many people to catch all the small things. And sometimes the small things can turn into big things. Fast.
  19. Pillows are worth their weight in candy. And they’re rare. Hold on to what you have. Definitely don’t trade one in for a blanket. Those things are a dime a dozen.
  20. Always have a way to clean up a small mess. Make nice with the cleaning lady for the big messes.
  21. The Baptist preacher comes every Wednesday. He does not know Sign Language; that’s just how he gesticulates when he prays. Making the sign of the cross after one of his prayers almost feels like an act of defiance.
  22. Most of all, I have learned that I never want to have to be in a nursing home again. Especially not as a patient. Nursing homes are sad and lonely and run by people who are overworked, underpaid, and simply don’t care the way they should. Not the way that family cares.

I can’t wait for dad to get well enough to get out of here.

17 Things I have learned spending a month in the hospital (so far)

So this is my first public post in a while. I have uncovered a few “facts”, shall we say, while spending most of the past month at Wake Forest Baptist Medical Center in Winston-Salem, NC with my dad. He has been in and out of the ICU since April 17 and I have learned….a lot. Here are a few insights for those of you who may be going to Wake Forest Hospital or really any hospital anytime soon.

  1. You can use a tube stuck in your arm to measure your blood pressure. Who knew!?
  2. Surgeons always move about the hospital in pairs. It’s like they are at camp and on the buddy system
  3. Stand in the corner of the bathroom furthest from the public toilet by the 5th floor waiting room while the toilet is flushing. Otherwise you will get splashed in the eye with toilet water while you are washing your hands. Trust me. I know. There is no going back.
  4. Ventilator straps do not get along with mustaches. They are like siblings at the end of a 12 hour car ride. There is nothing you can do to get them to sit next to each other peaceably
  5. New nurses tend to care about patients feelings more and explain more to the patient. Experienced nurses tend to be more jaded and stressed, but they are more efficient.
  6. Experienced doctors tend to be better about showing care and newer “student” doctors tend to be more interested in gaining their supervisors approval, but the newer doctors are much more easy to get in contact with.
  7. The stairs in the Ardmore tower are much more pleasant to walk up than the ones in the North tower.
  8. Also, there is a rooftop playground area on top of the Ardmore tower. You will probably encounter children and smokers in hospital gowns toting IV poles up there.
  9. The Subway in Reynolds tower is open until 11 pm but only on weekdays. The Einstein bagel is open until 3 am.
  10. If you see something called a “Magic Knight” that looks like a stapler, it is probably a pill crusher.
  11. If you are a nurse and a woman, you wear Danskos. That is your only choice. Unless you want to be some weird rebel and wear tennis shoes.
  12. Suction is your throat’s friend.
  13. If you have money in the market, invest in hand sanitizer. Now. …And nitrile gloves. And get your money out of the latex glove market. Why did you even have money in the latex market. You sure are silly.
  14. This is what sunrise looks like from room 453 Ardmore Tower.Sunrise from room 453
  15. There are better and worse lines to go in when leaving the parking garage. The 40ish year old parking attendant who wears a hoodie is a mean lady. Avoid her booth at all costs.
  16. The Wake Forest Hospital cafeteria has the best salad bar other than the restaurant Sweet Tomatoes in Utah.
  17. When the movie terminator becomes reality, hospital beds will be among the ruling class of robots. They weigh you, turn on the lights, drive down the hallway…The only thing these beds cannot do is give you a bath.

I hope these observations are helpful for you as you plan your next foray into the world of hospitals 😉 For those of you following my dad’s condition on the private posts, I may put something up later today, but there is not much new happening, more of the same really. We are in a bit of a holding pattern right now. Thanks for keeping up.

Love,

Veronica

Monday

Baby joy

I have been meaning for a while to write about the meaning of life. That’s not ambitious at all you say… hah!  I agree; hence why I have not posted about said topic, even though it has been on my mind so much. 

The subject of my thoughts is not so much the meaning of life overall, but more about the meaning of MY life. What do I, Veronica, stand for? What do I think is important? What am I driven to do? What makes me passionate? 

In one word, I would say the meaning of my life is joy.

Give me a whole sentence and I would say, the meaning of my life is to share joy with others, especially kids, and to do so through the mediums of play, beauty, nature, laughter, and music. That’s why I have loved summer camp for so long and why I chose to work there professionally. It is that place, culture, and community in which I have found joy and learned how to share joy with others. (In camp jargon, we would say that camp is a place were a kid can just be a kid. To me, a kid just being a kid is a fancy way of saying joy.) Lately, I have not felt like this mission of my life has been being fulfilled at camp.

It is so hard to share something like joy when you don’t feel like you have it yourself.

I am so enamored with joy, so enamored with bringing joy to others. I wrote a poem recently were I talked about abandonment in the moment. It takes abandonment to truly get lost in joy. And anyone older than 8 as a pretty tough time abandoning self consciousness and worry to a moment of joy. What is great about camp is how much the culture of camp gives kids just a little more time to abandon themselves to joy.

Joy is essentially is all about abandonment; abandonment in a moment of appreciation of something greater than you. Joy is playing a game that is so ridiculous that you can’t breathe for laughing. Joy is screaming out lyrics to a song. Joy is an unexpected view, a cliff, a sunrise, a storm, a beautiful woman. Joy is wonder and awe soaked in a ooey gooey sauce of humility. Joy is abandonment. Joy is Christ. Joy is the resurrection.   

nature joy

So obviously, camp is not the only place to find joy. Joy is so much bigger than summer camp. Realizing that my life is meant for joy gives me comfort when I worry about what my life and career should look like. I know as long as I can share joy with others it doesn’t matter how I do it. God has it covered.

And that epiphany makes it infinitely easier to focus on what counts, namely the source of my joy and all that is good. If I focus on him, I am fueled. If I focus on him, I am FULL TO BURSTING with joy!

And it is so easy to share joy when you couldn’t keep it inside even if you tried.

There simply isn’t enough room.

camp joy

Whats your joy? What brings you meaning?