All Grown Up

Remember, when you were a kid
and you thought that pimples
were a problem only for teenagers?
and you thought that grown-ups had all the answers?
but that they just wouldn’t tell you what they were
because they liked watching you squirm.
Remember when you were a teenager
and you thought that when you became a grown-up
you would know all the answers too,
but you would be different than all the other grown-ups.
You would tell all the teenagers
exactly what the answers were
just as soon as you figured them out.
.
Then you got older
and older
yet you still didn’t feel like a grown-up
until one day you were 27
and standing in the frozen food aisle crying
because you couldn’t decide whether to
buy organic peas or store brand
but really you were trying to
decide whether you should invest in your 401k
or pay more on your college loans
and you wanted to go back
to 2002 and tell 16 year old you
that she’ll never be a grown-up
and that adults don’t have all the answers.
.
They just pretend to
because that’s what “grown-ups”
are supposed to do.
They pretend to have all the answers
because grown-ups don’t cry over frozen peas
and they certainly never get pimples.
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Messy is Better

It’s painfully easy for me to live life adjacent to people, parallel lives that appear to intersect, but never truly do. I hide behind walls of entertainment and tact. It’s far more messy to live life with people rather than adjacent to them. Actually caring about people is scary and letting them in is petrifying. What if my overtures come across out of tune? What if they don’t love me back? What if they reject me? Or worse, what if they point out what is wrong with me and I actually have to become better? What if my best isn’t good enough? A cacophony of “what ifs” becomes a staggering burden that drives me into my own little corner, headphones in, cell phone in hand.

This week my family reminded me that living life together is better and that I won’t get better until I open up enough to let better in. Being surrounded by family restarted my healing. They do not heal because they are a balm, a coverup, or a distraction. My family heals me by reminding me what good is and reminding me what makes me good.

When Uncle Ramesh sneaks up behind me and taps me on the shoulder, when Everett hugs me, his arms wrapped around my calves and his chipmunk face wedged between my knees, when Manda asks me how I am doing and actually cares to hear a real answer. These things make me good. These things are healing.

When Asha can’t contain her laughter long enough to get out a whole answer in the board game, when Kate holds my hand and tells me her favorite color is turquoise because my favorite color is turquoise, when mom tells me stories about living alone as a young single woman. These things remind me where I come from. These things are good.

When Dan calls me his guru and thanks me endlessly because I shared my yogurt, when Erik offers to take the dog while we hike, when Susie, while 9 months pregnant, hosts the family Thanksgiving dinner. These things show me what good looks like. These things remind me where I want to go.

When Jonathan talks church shop with me, when Manda and I discover that we have the same taste in beer, so we share three, when mom insists on paying for everything even though she is working two jobs and getting collection notices about dad’s hospital bills. These things remind me who we are. These things are signs of the good within us.

When Uncle Ramesh asks me about dad dying, when he is not afraid to hurt with me, because he knows we both need to talk about it and he tells me that I can always call him. When Dan and Asha and Kate play rounds and rounds of duck duck goose while Everett sits in my lap and we read the same story book we read yesterday. When the board game is made for six people, but there are nine of us so we make up the rules because being together is more important than keeping score. These things are what good is made out of; these things make us good. These things make me good.

Being around these people reminds me how much better it is to actually live than to merely exist. When I actually live I cry a lot more, but I also belly laugh and sing and think and pray. Family heals me; family keeps me alive; family reminds me to live.

Family is messy. Messy is real. Real is better.

Daddy

Yesterday

There are too many weird things
No light in the hall tonight when I went to bed.
no need for one.
The stained sheets
Tucker all alone in the basement
Does it smell like death down there or is that in my head?
I will never give dad that tie for Christmas.
His body is lying naked in a fridge somewhere.
No wedding ring, no necklace, no soul inside
He’s gone
And today is Friday
And tomorrow is Saturday
And a week from now
it will be Friday again
And he will still be gone
& I will still be here
living

One week

I miss him so much
Sometimes so much
that I forget
to miss him

A Conversation
Me: You had no money
almost no ability to move
You were the poorest person I knew
Dad: No I wasn’t; I had you

Two weeks

I hadn’t cried in a few days
not since the funeral
really.
I cried today
nothing torrential
But I think I was numb
for a while
Being sick and dealing with the practicalities of the funeral,
I had no space in me
to mourn you
Now my cold is retreating
and my heart is remembering
that you are gone.
People talk about a hole in the heart
I don’t feel that so much.
It’s more like a gnawing
like there is a set of incisors
latched onto my right ventricle
and they won’t let go
Sometimes, I see your old t-shirt in my closet
and the jaws clamp down hard
and steamy blood pools in my chest cavity
I don’t know what to do then
do I wallow in it? pick up your t-shirt, smell it, maybe even put it on?
do I move on and close the closet?
do I throw your shirt away?
no, not that.
Right now, I can’t look at things that remind me of you
It hurts too much to be reminded of you
…as if I could forget

When I talk about you now,
I’m supposed to add “-ed”
I don’t want to
I don’t want you to be gone.

Three weeks

Remember when I was little
and you were 10 feet tall?
(well, actually 6’3”)
Remember how you carried me on your shoulders?
How tall I felt!

I thought we would have more time.

You died on a Thursday morning
I cried thinking about your eventual demise the night before
Did it hurt?
Did you know it was coming?
It was so hard for you to talk at the end.
Did you have last words?
Did you have a last fight?

Remember holding George Brunner’s baby in the backyard last summer?
You loved babies so much
and we laid her in your lap in the wheelchair and you looked…content and nervous
You worried about dropping her
Your body had betrayed you in every way possible.
I’m glad you got to hold a baby one last time
Even if you won’t ever get to hold mine.

What’s it like with Jesus?
Are you bored?
Do you get to watch the Bears and the Cubs?
Do you watch me?

I want more hugs, daddy.
And tell me why I call you daddy now?
Three and a half weeks ago, when you were alive,
I never called you daddy.
It was either “Dad!” or “Daaaaad” or “Father”
(the last always accompanied by an eye roll)

I think the last thing I ever said to you
was “I love you”
I am glad for that.

How were your last three weeks, daddy?
Did you miss me?
Were you holding out while I was there?
Did you give up when I left?
Did you let go when I left?
I’m glad you’re not hurting anymore
I’m mad you didn’t try harder.
I’m selfish that way.
Who will I call when my car makes a funny noise?
Who will mediate fights when mom and I go at it?
Who will walk me down the aisle?

At least we had our slow dance at Susie’s wedding
Did you know then that you were months away
from never walking again?
I think you did
because you hated to dance
From the moment you asked me
until we sat down again,
I will remember your tall frame holding mine then
just as vividly
as I will remember
holding your drained frame
in the bed on September 7
Your cold greasy forehead against my lips
Your clenched hands wrapped in mine
Your white toes poking out from the sheet
I said goodbye to your body then
I’m not planning on saying goodbye to your soul

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.

 

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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Un comfortable

This is a public service announcement…and also a poem. 

He makes you uncomfortable
doesn’t he?
When he drools
and shakes
When he says something
with slurred speech
and he looks at you
expecting you to understand
So you nod and smile
That makes you uncomfortable
doesn’t it?

Well, when that happens, it makes him uncomfortable too
Oh I don’t mean the drooling and the shaking and the slurred speech
After 3 years, he is used to that
That’s his new normal.
What bothers him
is that it bothers you

He’s a smart man
He notices the difference
between a “nod and smile” of understanding
and
a “nod and smile” that says
“I have no effing clue what you said but I can’t be bothered to actually try to understand you.”
He notices the faces
of disgust you make when his drool drizzles
through his beard and pools in a wet stain on his shirt
He notices how people talk extra
slow and extra
loud and extra
peppy to him.
He notices how he eats
and how it draws attention;
he refuses to eat in public anymore.

He notices
and it makes him uncomfortable too
So, excuse me if I don’t give one flying fart how uncomfortable he makes you.
Being him makes him uncomfortable enough as it is.

Attention everybody
Start getting comfortable with being uncomfortable
Cuz my dad’s here
Get used to it.

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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?

What do you do?

A few weeks ago, I wrote a poem for my Aunt Patti, who was fighting back at stage four metastasized cancer with kale and the sheer force of her indomitable will. Yesterday, at 4:05 pm, cancer won and we all lost. That poem a few weeks ago, I wrote for her and this poem I wrote today is for all of us who are left behind. 

There are no words
There are no words
What do you do
when her pain is over?
Are you relieved?
Are you devastated?

Probably
you are both
like me

Torn between love and despair
Between missing the sound of her voice
and knowing that now
for the first time
she can probably hear yours

Torn between
missing her
and loving her
between selfishness and selflessness

What do you do
when the earthquake hits?
What do you do when
the tectonic plate evaporates?

What do you do when she is gone?

What do you do?

I don’t know
yet
It’s only been a day
I do know some things
I am supposed to
breathe and eat and drink water
I am supposed to
cry and yell and pray
I am supposed to
talk and hug and tell stories
and
I am supposed to love
I am certainly supposed to love
even if I don’t know how
even if I have forgotten what that word means
I am supposed to love and hug and cry and yell and pray and tell stories and drink water and talk and breathe

I should breathe
just breathe
just keep breathing.

Without Words

My aunt has cancer. It has metastasized and we don’t know how much longer she has to live. Last week, my mom and I went to visit her. This was the first time either of us had gotten to see her since she was diagnosed less than a year ago. It was a powerful, beautiful, wonderful, and painful experience. Most good things are.

I wrote this poem for her: 

There you are.

Well,
There you are.
Bones stripped of flesh
Like a plate of chicken wings, post Super Bowl.
You sit, infrared lamp on the tumor.

Smiling at me and eating kale

There you are.
How do I tell you:
How much I love you
How much you mean to me
How sad your imminent death makes me
How do I tell you:
How beautiful you are
How strong you are
How wondrous you are
How do I tell you these things
When I barely speak your language.

You are a small woman
With the spirit of a buffalo
And the heart of an elephant
You endure.
You remember.
You persist.
You care.

You are a force.

Not a tornado or an earthquake,
You. Are a tectonic plate.
You make the earth move
In our family, you are the earth.
You are steadily there. Always moving,
Shaping, pulling apart, drawing together.

You are a force of nature, a steady
enduring, elephantine force
You outlast. You always have

And yet here you are
Down to bones
And the cancer likes sugar
So you eat kale.

And I love you
And I miss you already
And I don’t know how to tell you that
Beyond with these few words
But words never seem like enough
They never seem like enough
And yet
They are what I have to give.

So here they are:
I love you, Aunt Patti.
And I will miss you when you are gone.
I miss you already.
And there are not enough words to say
And there never will be.

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If you feel touched by this or want to help my aunt out, she has a Go Fund Me support page here: https://gofund.me/deafcancerjourney

Thanks for reading! -Veronica